Dementia Care Notes

Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

admin — Sat, 18 Feb 2012 06:30:47 +0000

Hyderabad-based Ritika is a 48-year old solo caregiver for her 80-year old father, while her older brother, a prosperous businessman, lives in Jammu with his school-teacher wife. Ritika entered the solo caregiver situation without realizing it, in a series of steps involving her mother’s death, her father selling his Jammu house without anyone’s consent, and his insistence on buying a house in Hyderabad where Ritika’s husband (in the armed forces) was posted.

When Ritika’s husband was transferred out of Hyderabad, Ritika moved her father to Jammu because he could not live alone in Hyderabad. But her father was unable to handle Jammu’s winter and insisted on returning to Hyderabad for the winter months, and so Ritika moved in with her father instead of joining her husband. “I knew he was ailing and felt duty-bound to look after him for the four-five winter months,” she says. However, her father did not go back to Jammu to his son even after winter, Ritika could not join her husband on his posting, and it has now been three years and she is still in Hyderabad, caregiving for her father alone.

In this interview Ritika shares the sequence of events, how every relationship has been tested in the last three high-stress years, how she copes, what she thinks of her future and how she manages to carry on in spite of such an extreme caregiving situation. [note]

Please give us an overview of your father’s state and the current care setting.

I do all the caregiving and cleaning etc. I am not comfortable employing a day and night male attendant because my father and I live alone.

My eighty-year old father, once an alcoholic and chewing tobacco addict, is now suffering from hypertension, chronic kidney disease (CKD) and middle to advanced stage fronto-temporal vascular dementia. He can walk a little bit with the walker, but is wheelchaired for hospital visits and can only travel in an ambulance since he is unable to seat himself in a car without trained assistance. He also has a permanent suprapubic catheter [a catheter inserted into the bladder to drain urine directly into a bag]. He has no bowel and bladder control and has to wear diapers at night. He is incapable of changing his diapers and cleaning himself due to severe movement problems. I do all the caregiving and cleaning etc. I am not comfortable employing a day and night male attendant because my father and I live alone. He is heading for renal failure, and is very dependent.

You mentioned your father’s addictions and consequent health problems. This must have affected your childhood, too. Please elaborate on that aspect first.

My father had a very successful career, but at home he was just a source of tension to all of us. He would come home inebriated most evenings; every day, our tension would start around 6.30 – 7 p.m. Will he come home on time? In what condition will he come home? When will he come home – these were questions that would plague us every day. Some evenings he would remain at home but get drunk at home.

He never once lost his temper or raised his voice or hand; whether sober or drunk, he remained exceedingly courteous and polite. But I would say his drinking was violence in itself and cost me much of my childhood. My mother had been a very talented and creative person, and it hurt me to see her give up everything to try and give us a proper life, and also remain so stressed all the time because of him. I recall staying up on school nights till two and three in the morning, and I mostly underperformed in school.

I think addictions are choices, and that my father chose to continue his habits… He got hypertension, suffered transient ischaemic attacks (TIAs) that are basically small strokes… All these were brought on by his choices.

I think addictions are choices, and that my father chose to continue his habits. After his retirement, he stopped drinking (though he continued with his tobacco). All those years of tobacco and alcohol abuse resulted in various ailments. He got hypertension, suffered transient ischaemic attacks (TIAs) that are basically small strokes. His kidney started failing. All these were brought on by his choices.

Your older brother lives in Jammu and your father can still travel, so why are you still looking after your father alone and all the time?

I will share what I understand about the situation; it’s a bit complex. My brother and sister-in-law had been living with my parents, and running the house as my father got no pension. Then my mother got cancer. My brother and his wife did everything possible to treat her, and also keep her comfortable and happy but my mother’s state kept worsening.

His attitude and behaviour changed after the TIAs but we failed to link the strokes with his changed behavior; we attributed it to ‘depression’ due to mom’s death.

My father had already been suffering from hypertension and kidney problems for some years by then, and shortly after my mother’s death, my father had a few TIAs, collapsing without warning. He would also often lose bowel control and soil his clothes and the area around him. His attitude and behaviour changed after the TIAs but we failed to link the strokes with his changed behavior; we attributed it to ‘depression’ due to mom’s death. I feel the doctors should have really emphasized that he would act unreasonably, feel persecuted etc. due to the strokes.

Following mother’s death, my brother suggested that the old house be sold and all three of them (father, and brother and his wife) move into one of two houses that my brother had recently purchased. My father agreed to the sale but insisted he would sell it because, according to him, my brother would sell it at a lower rate just to finish the job and then keep the money. This accusation was deeply hurtful to my brother who is large hearted and sincere. The situation became very vitiated and I was called to make father see sense.

But my father was closed to reason and determined to sell the house himself. Brokers and buyers would drop in to see the house at all odd hours at very short notice, which was extremely intrusive for my brother and sister-in-law, but my father refused to listen to me or act more considerate. Unfortunately, as my brother and sister-in-law were at work during the day, and I was with my father, they started believing that I was manipulating my father to sell the house alone without including my brother.

Daily my brother would come from work tired and try to talk to my father but father just refused to talk, which frustrated my brother, who would end up shouting. My father also indirectly accused my sister-in-law of having her eyes on my mother’s jewelry.

What they did not realize was that my father refused to listen to me either. Daily my brother would come from work tired and try to talk to my father but father just refused to talk, which frustrated my brother, who would end up shouting. My father also indirectly accused my sister-in-law of having her eyes on my mother’s jewelry. One day, my father was really demeaning and insulting to my brother and it crossed a threshold; my brother and sister-in-law packed up and moved into one of the houses they had purchased.

In a day or two, my father found a buyer and sold the old house for a good amount. The full payment would take time to come through, and my father insisted that he would leave for Hyderabad immediately (where my husband was posted at the time), and told me to lock the house and take him to Hyderabad! Before leaving, he called my brother and just said, “I am flying to Hyderabad. I have sold the house the way I wanted. Bye.”

I was extremely angry at my father, but he could not be left alone, he refused to go to my brother, my brother refused to come back to the house to take him, and I could not leave him alone in the house. After a day of some hasty packing I was forced to fly down with my father, who carried the first installment of the sale in cash, to Hyderabad.

How did this impact the marital front, given that you now had this unplanned additional responsibility of settling your father?

To take my father to live with me (even for a short while) was a tension-filled nightmare given spouse’s extremely moody nature, but I had no option. I must mention here that the situation on my marital front has been very difficult from day one.

Within the first month of marriage my husband showed his true colors by slapping me. Since he is in the armed forces I complained to his commanding officer and also left home. He promised good behavior and after months of cajoling I returned but he has remained a borderline case, displaying a lot of anger and criticism at home, unless he is in a good mood. However since he knew I would complain to the authorities he kept his violence in check.

Anyway, after bringing father to Hyderabad, I located an apartment for him to buy and we flew down to Jammu to collect the remaining payment of the house sale, pack my parents’ entire household and bring it to the new apartment that my father had purchased. My father still refused to move to my brother’s house, nor did my brother call or come to take him, probably not wanting to be hurt and insulted some more.

With my father installed in his new apartment in Hyderabad, I had to juggle the running of two homes. I would finish work at my husband’s home, send him off for work, then rush to my father’s apartment, work on arranging the furniture, clean and cook for him and then rush back in time to serve my husband his lunch. I also had to juggle a lot of activities and functions which a serving officer’s wife is supposed to undertake. Within a month or two of juggling all this I was finally able to get a cook and maid hired for my father which provided me some respite.

What was the role played by your brother during all of this?

The rift this incident caused was so deep, and the mistrust so high that my brother had at one point even contacted lawyers on how to proceed against father and me.

He was still shocked and upset and not really communicating much. Nor was my father apparently interested in discussing matters with his son, who had looked after him and the family so well all these years. The rift this incident caused was so deep, and the mistrust so high that my brother had at one point even contacted lawyers on how to proceed against father and me. In fact when my father wanted the new apartment bought in my name, I flatly refused, knowing that such an action would make my brother even surer that I had all along been after my father’s money.

All through this my father seemed unconcerned about everything. He made no attempt to patch up with my brother. It was only after many months, with the intervention of some close relatives, that my brother was willing to consider that maybe father acted on his own. Though we have apparently “reconciled”, my brother’s accusations have made me wary of him, and have affected how much I would be willing to depend on him in the future.

In hindsight, I believe my father’s behavior was a combination of his old uncommunicative nature and also the impact on his decision making caused by his TIAs.

In hindsight, I believe my father’s behavior was a combination of his old uncommunicative nature and also the impact on his decision making caused by his TIAs (which he had when my mother was in her last stages of cancer, and perhaps later). My mother’s death also broke his tenuous, fragile link with the one person he did care for in his own way. But the reality is, my brother still has a lot of bitterness about the way the Hyderabad apartment was bought.

So in effect, you were managing the situation in Hyderabad on your own.

. At this time, I did not see my role as a decision maker for my father; my father was living his life and taking his decisions, and I was only helping, so when my father ignored getting the tests, I kept pestering him but did not forcibly drag him to get them done.

Yes and in the beginning it was not so bad, once I had organized the cook and the maid. In the four-month period that my father stayed with us (until the apartment was bought), my husband had organized a check-up for him with a very good kidney specialist who handed him a list of tests to do. My father got nothing but instead would hire taxis and go about the city and come back for lunch or tea. At this time, I did not see my role as a decision maker for my father; my father was living his life and taking his decisions, and I was only helping, so when my father ignored getting the tests, I kept pestering him but did not forcibly drag him to get them done.

Even when he moved into his own new apartment he refused to get the tests done. After a year and a half of all this, my husband got posted out of Hyderabad. I had to beg my father to move back to my brother’s place so that I could move with my spouse, as it was clear that my father couldn’t be left alone in a strange city. My husband went off on his posting and I was left begging father and son (who were back on talking terms) to free me to go to join my husband.

It took another two months to arrange for my father to go to Jammu, because my sister-in-law’s father got critical suddenly and died. After they finished the ceremonies my father was called by my brother, I put him on the plane to Jammu. Free of the responsibility, I flew out the very next day to join my husband, who was now a commanding officer and due for his promotion. This was a critical posting for him and my presence and support was necessary.

But by September my father started complaining about the Jammu cold and insisted on returning to Hyderabad. My husband was posted in the wintry north so I could not host my father. I told my husband that dad could not live alone, and said I would be with my father till end-March, when Jammu would be warm enough for my father to return to my brother. But I have never gone back to my husband ever since.

Wasn’t your father supposed to return to your brother when Jammu became warmer? What happened?

When my father arrived in Hyderabad he did not seem very well and within a month of returning to Hyderabad began acting confused, dribbling urine, passing stools without warning etc. My father and I were now alone in that city, without back up.

He would start walking from one room to the other and five minutes later I would still find him standing half-way there, looking blank. I would say something like ‘Dad!! Still here? Why have you stopped?’ and then he would look at me like he had just realized that he was not moving…

Father’s condition rapidly worsened. He would start walking from one room to the other and five minutes later I would still find him standing half-way there, looking blank. I would say something like ‘Dad!! Still here? Why have you stopped?’ and then he would look at me like he had just realized that he was not moving, but standing till even though he was only half way across the room. He had major problems in turning while walking etc. also.

It took two to three months of numerous tests, doctor visits and finally a two-month hospitalization for the magnitude of his health problems to be tackled. All this happened in Hyderabad and my brother flew down to settle the hospital bills. He said he would make arrangements in Jammu and then take father with him. But this did not happen and most of all I found myself unprepared financially through this entire situation.

Could you elaborate on the financial problem aspect please?

Yes, the financial problems were most unexpected. As I rushed through test after test I ran out of cash (my husband had never given me money, not even housekeeping money. If I gave him a grocery list he would make the purchases. I used to meet my personal expenses from online freelance work that I took up from time to time. So I did not have much by way of savings).

When my money ran out I went to father’s bank only to realize that his bank accounts were practically empty. There should have been a very large amount left over from the Jammu house sale over and above what he had spent on the purchase of the apartment at Hyderabad, because I knew what both the figures were (the sale figure in Jammu and the Hyderabad purchase figure). But there was nothing. My father could not say what had happened to the money. We haven’t been able to trace that money till date.

In the months following his return from Jammu, father slipped from crisis to crisis, and my days were spent cleaning up after him, taking him back and forth for check-ups and investigations, doing all the housekeeping and cooking (I had dismissed the cook and maid) plus trying to work and meet deadlines to earn money to pay for it all. I tried to get a steady retainership from home but these things take time, and nothing had been finalized yet by the time my savings finished and I hit financial rock-bottom.

…I was looking at an electricity bill and trying to decide whether to pay it or buy groceries…I went without meals so my father could eat. Plus there was the eternal fear of his condition worsening and my having to find the money for more tests…

Matters were in such bad shape that I was looking at an electricity bill and trying to decide whether to pay it or buy groceries. Every meal time, I’d be tense on how I’d put food on the table. I went without meals so my father could eat. Plus there was the eternal fear of his condition worsening and my having to find the money for more tests. It was the sort of situation nothing in my life had prepared me for.

I knew I could set up things if I got some lead time alone to build up a funds base; but such time was not forthcoming. So, driven to the wall, I began selling my personal silver and gold to get some money. I started with the silver. I would take a bag of my silver utensils, the puja thaali, things like that, to an area where there were silver and gold shops, and ask the shops how much they would pay for it. I would check in three or four shops and then sell where I was getting the best price.

I would take a bag of my silver utensils, the puja thaali, things like that, to an area where there were silver and gold shops, and ask the shops how much they would pay for it…When the silver was over, I started selling the gold.

The few thousands I would get would let me place food on the table for some more days, clear some more bills, buy the medicines. My father needed special food, and it was expensive to give him what his health required. Then I would be back again, selling more silver.

When the silver was over, I started selling the gold. I even sold a gold mangalsutra chain I had. As for my husband, he was already upset at my brother’s repeated broken promises and felt strongly that my brother was not doing what a son should do, and that I was not fulfilling my role as his wife; though he was right, he had already tormented me in myriad ways through every year of my marriage, and I did not see him as supportive and had no expectations from him.

I finally managed to get a job that pays Rs. 15,000 per month, enough to eat and pay for utilities and basic medicines, but have no buffer for emergencies, and little for an occasional treat. I am deeply grateful for this job, since I can only work from home.

My brother has now started paying for all my father’s medical expenses and hospitalization. I send him the bills and expense-sheet each month. I still manage the home expenses myself (though my brother says he wants to pay for those too, I am uncomfortable about what will happen after father’s death in case he demands a reckoning of all that he has spent).

My brother would have unquestionably bailed us out, but after all that he had accused me of I was not about to turn to him (this was my mental state at that time). …he would clear the hospital bill, but his manner of talking was still brusque and whenever he disagreed with something he’d yell. I definitely did not see him as someone I would approach for money for the endless doctor’s visits and costly tests that preceded every hospitalization.

My brother would have unquestionably bailed us out, but after all that he had accused me of I was not about to turn to him (this was my mental state at that time). My brother would drop in for an overnight trip when my father was admitted in the hospital for some problem or another, and he would clear the hospital bill, but his manner of talking was still brusque and whenever he disagreed with something he’d yell.

I definitely did not see him as someone I would approach for money for the endless doctor’s visits and costly tests that preceded every hospitalization.

All this time your husband was waiting for you to join him where he was posted?

I would call my brother who would assure me he would be there by the weekend to take father back. … but invariably on Friday or Saturday, I would get a call to say he could not come due to a crisis but would be there by next Wednesday.

Yes and every day or two he would call to get some idea of when I would be returning. I would call my brother who would assure me he would be there by the weekend to take father back. I would pack both our suitcases, but invariably on Friday or Saturday, I would get a call to say he could not come due to a crisis but would be there by next Wednesday. I would call up my husband, cancel and face his ire. Wednesday would come and go with a cent per cent promise of brother’s being there within another 10 days, which would inevitably be cancelled. It took me two months of this to learn to stop packing the suitcases each time.

This “coming on Sunday …. Sorry! now coming on Wednesday” nonsense continued till the month of May-June when I forever stopped asking my brother when he could come to take dad. The impact of all this was depressing for dad and very bad for my already tough marriage too. Nevertheless, I told my husband I could not abandon my father in this condition and that I was not accountable for my brother’s actions, just as I was not accountable for my father’s or husband’s actions. He understood.

So you have not had any break in all these three years since that September when your father returned to Hyderabad?

I actually did manage a 10-day break. My husband had a conference to attend and my participation was very important simply because there were a lot of rumors circulating that we had separated. This could prove adverse from his career point of view.

My husband saw no reason why I couldn’t take a week off. Tired of my brother’s repeated last-minute cancellations and broken promises in the past, my husband sent me an air ticket (connecting) from Jammu till the conference venue-city. The tickets were in and would have cost my husband thousands had they been cancelled last minute.

My brother was unable to muster up any protest, and sent the tickets for me and dad to fly to Jammu and then I flew to join my husband at the conference venue. My husband wanted me to fly back with him, but I had some professional commitments to wrap up and would also need to shut the house down. I told him I would join him in a month.

I was back to looking after my father full time, with a suspicion that such a break would not be possible in future. I was right; that was my first and last break.

However, at my brother’s end they were finding it difficult to cope with father; and my sister-in-law had complained to my father’s older brother’s that father was irrational and her maids could not handle it. Within ten days of my return to Hyderabad, I was back to looking after my father full time, with a suspicion that such a break would not be possible in future. I was right; that was my first and last break.

What current role does your brother play, and how supportive is he?

The main way my brother has been supporting is sending money for my father’s medical expenses, which is something he started doing only last year after the shape of my father’s illness and its financial impact became clear and after he realized I had been selling gold (something he has now forbidden me to do). I keep track of all the medical bills and send him a monthly round-up with the bills. This money is a big help.

…my brother rarely calls (and my sister-in-law never calls) to ask about how I am faring, and so forth.

My brother continues to live in Jammu, and drops in here maximum for an overnight visit if he is passing by, or if my father is in the hospital. Last year, he came for, I think around two nights across the entire year. Also the one complaint I still have is that my brother rarely calls (and my sister-in-law never calls) to ask about how I am faring, and so forth.

Sometime back I had a hairline fracture of the foot and was unable to rest it at all due to caregiving/housekeeping, but there was not one call from them asking if I was ok.

Sometime back I had a hairline fracture of the foot and was unable to rest it at all due to caregiving/housekeeping, but there was not one call from them asking if I was ok. My sister-in-law very rarely if at all picks up my calls. My brother also calls rarely (maybe twice a month) to talk to father or ask me for updates, and I am the one who calls up to tell him the status.

My brother has no idea (or chooses to have no idea) of what my life is like and sincerely provides solutions without asking what works for me: for example, he insists I get a full time male attendant for my father, but cannot understand how I, as a female living alone with an elderly parent, do not want to do that.

We always had an affectionate trusting bond which was severely tested when he felt I had been instrumental in separating him from father and property etc. He felt it was my decision to take father and all the money from the house sale to Hyderabad. He did not realize for a long time that I had as little to do with the finances of that sale as he did. Our relationship has improved a lot as he is seeing that I actually ran away with nothing.

My effort has been to provide him regular info and updates on dad, and to build bridges and this has worked. He has personally seen all dad’s bank account printouts, which I could not get done since I could not move from the house. There is no money in any.

I recently told my brother I would like a month’s respite from caregiving as I was feeling very tired and burnt out. He told me to sell the Hyderabad apartment, move with father and all the stuff to his other house in Jammu, and then take care of my father there. I ask you, where is the respite?

I don’t know if my brother really understands dementia, and how much it impacts life and care. His own caregiving for my mother (which he and sister-in-law did excellently and with tons of love) was for cancer, which is very, very different. My brother has not lived with my father in this state for long enough to understand how different and difficult this is.

…my brother seems to have understood my only role and responsibility as that of a daughter looking after her father and that if I want help, I and dad should relocate to Jammu. But even there looking after my father is my job…. Shouldn’t my brother have been concerned about his sister’s marriage? In any case it seems as of now at least that this solo caregiving will only end with my father’s passing away.

Also, regardless of my admittedly tough marriage my brother seems to have understood my only role and responsibility as that of a daughter looking after her father and that if I want help, I and dad should relocate to Jammu. But even there looking after my father is my job. I had never thought that my marriage, my life, my priorities would be ignored, but the way it turned out, the situation has developed in a manner that neither husband nor brother came forward.

Since I have taken over charge here my brother has been able to take two vacations last year, one abroad and another to a family gathering. His vacations are the first he has taken after nearly 18 years of marriage, looking after mom, her cancer etc. The way I see it is that he should also come to visit his dad.

Overall, I don’t see how as a couple, my husband and I can ever pick up where we left off. Shouldn’t my brother have been concerned about his sister’s marriage? In any case it seems as of now at least that this solo caregiving will only end with my father’s passing away.

Do you have friends and neighbors who help or support?

By and large, neighbors are uncertain of what is going on, and they avoid me. As far as they are concerned, when I came here, I was a married woman, but now they rarely if at all, see my husband. My brother does not come either. In the beginning, I would frequently tell the neighbors that my brother would be coming and I was going to my husband and then my brother’s trip would get cancelled, again and again. This looked so suspicious. My neighbors probably feel this is a funny family, so best keep away.

I have not had time or energy to make friends, but I do have a friend with whom I can spend about four hours a week, and also some childhood friends whom I call up to share things, to get or give updates, or just to rant. So yes, there are some people I can call up when I am really down.

Socially I am isolated, and I have to make very conscious efforts to remain connected. Because I am always short of time and energy, I am choosy about whom to talk to, but there are times I feel very lonely. In terms of friends who would actually drop in when there is a crisis, most of my friends are in other cities, and I don’t think I can feel secure about friends being available for such help, I’d rather be self-reliant.

How are you currently balancing your caregiving and work, and what is your current financial status?

I continue to live an on-the-edge situation financially. I am earning steadily now, but a monthly income of 15 K is small, and though I manage some extra assignments sometimes and make another five or ten thousand, such assignments also mean more work for which to squeeze out time. Balancing expenses remains tricky.

Our apartment is in an upper middle class locality, and neighbors expect me to pay my share in joint activities, like getting the apartment complex painted. The amounts are usually between 10-20,000 per apartment, and managing each such amount is a major struggle for me.

Every unexpected expense comes as a shock. Some weeks ago, my computer’s Internet connection stopped working… I finally decided to use up some money I had just received for some work to set my Internet connection right, but every decision on what to get repaired (and what not) is a juggling trick.

Every unexpected expense comes as a shock. Some weeks ago, my computer’s Internet connection stopped working. The people I work for expect me to check my email and respond all day long. I dared not tell them about my Internet problem, because that would make me seem unprofessional and unreliable, so I had to keep rushing to the cyber café. I finally decided to use up some money I had just received for some work to set my Internet connection right, but every decision on what to get repaired (and what not) is a juggling trick.

People who have known me in the past know me as someone from a well-to-do family, and cannot grasp that I am now operating with zero savings and a very low income.

Today, into your third year of solo caregiving, what is life like? Have you been able to make any headway in meeting your wants and needs?

I have found a daily routine that allows me time to work and some time to move away from this atmosphere. Nevertheless my mind seems to have become very sluggish and I seem to be most productive in the very early morning hours when father is asleep.

I have also learnt to grab periods of free time to pack in activities that matter to me. This way I am much more fulfilled than I was when all this began.

I have also learnt to grab periods of free time to pack in activities that matter to me. This way I am much more fulfilled than I was when all this began. For instance many days I find myself up at 4.30 or 5.30 a.m. On such days I do a good amount of pending computer-related work before dad gets up. Then I clean him up (he is on diapers and catheter) before moving him to his TV room and giving him tea and breakfast. Every time I move my father from one place to another, it takes at least ten to twenty minutes, and needs much coaxing and helping, but it gives him some much needed change, so it is worthwhile.

I leave him with the TV and newspapers, do some home clean up, and then manage to put in another hour or so of professional work/phone call etc, before the maid comes to wash vessels and clean the house.

I have, after much experimentation, stopped cooking and switched to a very hygienic home-delivery dabba instead, which saves me cooking time, grocery management time, and turns out cheaper with more variety in meals. The switch to the dabba has made a major difference to my quality of life. It’s one area less to think and plan about. Following lunch, dad is settled for a three-hour nap and I get a clear three hours off, which I use to finish off outside work. Then it’s time for dad’s physiotherapist who also these days gives me a half-hour session to help my frozen shoulder.

She leaves by around 6 p.m. and between that time and 7.15 or so I manage a walk or any other outside work. After dark if the electricity goes my father gets a bit disoriented and since he already hallucinates about my dead mom and grandmom speaking to him, I feel it is wiser to stay home after dark.

One TV serial and the net is currently my major source of entertainment. I slump in front of the TV every evening, and I keep the reruns going in the morning for some chatter in the background while housekeeping.

Just staying home all day with no one to talk to gets on my nerves sometimes. Sometimes I call up friends just to hear another voice, or to hear myself speak.

Just staying home all day with no one to talk to gets on my nerves sometimes. Sometimes I call up friends just to hear another voice, or to hear myself speak. Once in a while, when I am really feeling closed in, I try to take an outing to a mall or visit a beauty parlour or do something that will make me feel more “normal.” My daily routine is more complex on the days when my father needs some medical checkup, or has any emergency.

Being cooped up with an 80+ uncommunicative man as a companion with no end in sight sometimes makes my resentment surge, but on most days I try to see the plus points and go with those.

Personality-wise, I have changed over these years. In many ways I am more patient, but more impatient in others. For example, I can longer tolerate inane/idle/pointless chatter. Nor do I like people who whine and complain about small things. Being cooped up with an 80+ uncommunicative man as a companion with no end in sight sometimes makes my resentment surge, but on most days I try to see the plus points and go with those.

These are [i] I am getting a chance to restart my career and build savings, [ii] I am tested daily about how I handle tasks, and am becoming a better time manager, [iii] I am developing a self-motivated approach to happiness which will sustain me after my father dies.

What is your feeling towards your father? How does the past affect your function as a caregiver?

Despite all that I do for him I do carry a lot of anger and resentment against my father. My father was, as I have said, a tobacco addict, and also an alcoholic for years. His medical problems today are a direct result of his addictions.

His medical problems today are a direct result of his addictions. He indulged himself when he was younger and the result of that has destroyed whatever I had built up on the personal and social front over the years. He spent his life without planning. He did not even bother, for years, to build good communication with his children.

He indulged himself when he was younger and the result of that has destroyed whatever I had built up on the personal and social front over the years. He spent his life without planning. He did not even bother, for years, to build good communication with his children. His problems with my brother over the house sale were partly because they did not have enough communication even before the TIA strokes impaired my father’s behavior and problem-solving abilities.

I deeply resent the addictions of my father that have left him fully dependent on me. My resentment really peaks up when I am exhausted, bored, and lonely, and on such days, I yell at him, pointing out how I am paying the price for his mistakes. At times like this, I feel that, given that I am doing all the work all alone and that this state of his was because of his mistakes, he has earned a periodic shout.

I have no regrets about that yelling because I know I will go crazy if I don’t let go even occasionally. At least I am making sure of his well-being in spite of all my fatigue and everything else. It would be inhuman to expect that I don’t have any anger about the situation. One has to live this life to know what it is like.

I am almost 50. I so badly need a day when I can wake up when I want. I need a day when I don’t have to think about my father all the time and can just think of myself. I need a day to pamper myself, maybe just go window shopping and out to lunch without a thought. I don’t know for how many more years my life will continue to be like this,

How can I explain it? I am almost 50. I so badly need a day when I can wake up when I want. I need a day when I don’t have to think about my father all the time and can just think of myself. I need a day to pamper myself, maybe just go window shopping and out to lunch without a thought. I don’t know for how many more years my life will continue to be like this, so I have started to accept all the limitations and maximize all that I can do.

This period has made me realize that life is about accepting reality and finding solutions without being too adversely affected by the limitations. Nevertheless, there are still days when I would rather wake up and see my husband’s face instead of my father’s bottom full of potty!

Looking back, what can you say about the overall caregiving experience and about where you are?

Let me say it: It need not have been like this.

Solutions evolve out of trust and sitting together and planning for all eventualities. All ties get tested at times like this if there is no plan.

If there are elders in a family, the chances are that such situations will occur. Families can be ready for them. They can plan for them. When situations occur, solutions don’t automatically evolve out of sheer love and affection for each other. Solutions evolve out of trust and sitting together and planning for all eventualities. All ties get tested at times like this if there is no plan.

I think it is totally criminal for a family to put the entire burden on one family member so that it takes a toll on all aspects of that person’s life. I think it is criminal to expect one person to cope with all the work, all alone, all the time and not do anything to give the person any break at all.

Sending money is simply not good enough. I should not be made to feel guilty to ask for a month off. I find it is useless and futile to ask anyone to bail me out, and I repeat: it need not have been like this.

Sending money is simply not good enough.

I should not be made to feel guilty to ask for a month off. I find it is useless and futile to ask anyone to bail me out, and I repeat: it need not have been like this.

Caregivers should get that occasional bail-out, some breaks.

What keeps you going, and what are your thoughts about your future?

The last two years were horrible because I did not know what I was getting into, and the financial hardships, the isolation and the sheer amount of work and everything else all got very overwhelming. But I think I have crossed the bridge now and I will survive this.

I do what I have to do. The times are fewer and fewer that I feel deep resentment and anger, I also know that at the end of the day, I have to keep up my morale. The last two years were horrible because I did not know what I was getting into, and the financial hardships, the isolation and the sheer amount of work and everything else all got very overwhelming. But I think I have crossed the bridge now and I will survive this.

I handle my daily routine mechanically and try to detach myself while I also try to develop skills which I can use later. My target is to become more efficient and effective on all fronts and keep finding solutions instead of feeling helpless, angry, and resentful.

My target is to become more efficient and effective on all fronts and keep finding solutions instead of feeling helpless, angry, and resentful.

About my future, I don’t know how long I will be looking after my father. After he passes away, I don’t know whether I would like to stay with my husband full time again. My husband with his tendency to violence, his put downs, disapproval and disparaging nature can be very stressful to handle too. Also suppose I stay on here with father for another five to seven or even ten years (if he lives till 90) – then will I have a marriage left at all? Who knows what the future will bring.

I am focusing on my earnings now and on moving along practically and cheerfully. I have to act wisely now if I want a secure and stable future.

Thanks for this eye-opening interview, Ritika. Let’s hope all works out well for you!

Note:This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Some names and details have been changed to protect the identity of the interviewee.

Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

admin — Wed, 28 Dec 2011 04:51:24 +0000

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved. [note]

Please tell us about your father’s medical problems in the last year of his life, and the overall care arrangements you and your sister used to support him.

My father passed away in June 2011 at the age of 80. He had developed dementia caused by Binswanger’s disease and multi infarct (vascular dementias) for over 12 years, and he also suffered from other medical conditions like hypertension, age related arthritic conditions, and later UTI and heart arrhythmia. My mother, and later my sister and I took care of him over the years.

My father was not ‘bedridden’ for most of what turned out to be his last year of life. Had we allowed him to, he would have loved to stay in bed. He was very weak physically but was awake for many hours during the day, and also in the night. Sometimes he would not sleep at all for a couple of days and later compensate by sleeping all the time and then he had to be woken up for bath time, mealtimes, etc. (sometimes he would even fall asleep during his bath ).

Usually when he was awake, my sister and I would walk him around the house 2-3 times a day. He used a walker, and we had to physically support and assist him as he walked. During the day, we would seat him near windows. From one window he had a view of a road and from another, he could see a garden. Also, for some hours, especially at mealtimes, we seated him in front of the TV because he usually liked watching cartoons.

I had suspended my career and returned to India so that I could stay at home all day. I took care of the housework and the daytime activities of caregiving. Usually my sister would spend time in the evening with him after she returned from work; she would feed him dinner, give him his medicines, and put him to bed.

All housework and caregiving was shared between us sisters and we maintained a very sterile environment to keep him in good health. I had suspended my career and returned to India so that I could stay at home all day. I took care of the housework and the daytime activities of caregiving. Usually my sister would spend time in the evening with him after she returned from work; she would feed him dinner, give him his medicines, and put him to bed.

In 2009 we had decided against having any outsider come into the house, and this reduced the incidences of his catching every passing infection. However, in the last year of his life, he still suffered from severe constipation, uncontrollable hiccups, epileptic seizures, heart arrhythmia, and aspiration pneumonia. Despite our doing our best to take care of him, he fell down a few times either from sitting position or in the toilet, and once from his bed. Though he did not suffer any fractures, these incidents shook him up.

Please describe how your father progressed from mid-stage to late-stage and how his dependence increased.

His decline was so gradual that it is difficult to say when he actually reached “late-stage”.

In 2003-04, three years after his initial diagnosis, he displayed idiopathic laughing, crying, and hallucinations. Though this behaviour did not worry us, the doctor noticed it during a regular check-up and prescribed some medications that made him zombie-like. This necessarily meant that he needed increasingly more help with his daily activities.

Everything had to be done for him, like brushing his teeth, cleaning after toilet, giving him a bath, dressing him, spoon-feeding him, walking him around the house, and helping him to exercise (as explained by the physiotherapist). He did not even know he had to ask for water if he was thirsty. We had to remember to give him water from time to time and make him sip from a glass we held. He was not even aware that he needed to hold the glass and take it to his lips. He would just let go of the glass if we let him hold it.

Then in April 2004 he suffered a fall and had a hip replacement surgery after which he was largely bedbound for many months. He was like a doll that needed to be washed, dressed, fed, and exercised. After the medication for his idiopathic laughing/crying was withdrawn in 2005-06, his cognition improved greatly but his physical dependence continued. He could do nothing on his own. Everything had to be done for him, like brushing his teeth, cleaning after toilet, giving him a bath, dressing him, spoon-feeding him, walking him around the house, and helping him to exercise (as explained by the physiotherapist). He did not even know he had to ask for water if he was thirsty. We had to remember to give him water from time to time and make him sip from a glass we held. He was not even aware that he needed to hold the glass and take it to his lips. He would just let go of the glass if we let him hold it.

But his improved cognition meant that we were able to have small conversations with him, i.e., he would give responses on some days and these were considered and thought-out intelligent and even humorous responses. On other days, when he could not respond, he would just remain silent. He never initiated conversation.

Then, just like that, one day in 2009 he stopped speaking. We realized he could not speak any more.

Then, just like that, one day in 2009 he stopped speaking. We realized he could not speak any more. Perhaps he had suffered an ischemic stroke in the night because he also started drooling that day. He could still nod or grunt his responses on good days (i.e. he understood speech) but could not speak anymore. His swallowing difficulties also started then. He would frequently swallow the wrong way and have painful fits of coughing. This was also the time we started to give him pureed food because he would not chew and would just hold food in his mouth and spit it out after some time. Also he started showing an exaggerated startle response, not only to loud noises but also if someone spoke in a normal tone in a quiet room. He started fearing strangers. Though he seemed confident about responding to my sister and me, he would not respond to the untrained ayahs we hired for help at that time.

After my sister and I started doing all the caregiving ourselves, we found him far more responsive than he had been with hired ayahs, though his dependency levels continued to increase.

Your father was admitted to the hospital for some problems. Could you describe the problems, his stay, and the overall experience?

Some hospital staff were downright disbelieving about his dementia when we explained it to them.

In the last few years my father has been in and out of hospitals many times. We found a lack of understanding of dementia in all the hospitals we took him to, but the staff at some hospitals was more receptive about understanding dementia than staff at other hospitals. Some hospital staff were downright disbelieving about his dementia when we explained it to them. Perhaps this happened because he always looked well-dressed and presentable, and no one could make out something was wrong without interacting with him.

We usually had to request the doctor to give instructions to the nurses to be allowed to be with father when injections were administered, when a Foley’s catheter was inserted, or a bladder wash was done, when blood pressure readings were taken, or nebulisation was given. Such instructions had to be repeated to the new nurses whenever their shift changed. Also, whenever a new doctor was given charge of my father’s care, we would have to convince this new doctor to instruct the nurses to allow us to be with father.

One common problem we faced was that the nursing staff had no idea how to deal with someone who could not understand and would not co-operate, but even then they would not allow caregivers to be present alongside when treatment had to be given to the patient preferring instead to get wardboys to hold the patient down. He would try to fight off nurses trying to put in a canula or draw blood for tests. He would get agitated even with a blood pressure cuff being slipped on his arm unless one of us held his hand and told him what was going to be done and that it was okay because it was treatment and we were watching. We usually had to request the doctor to give instructions to the nurses to be allowed to be with father when injections were administered, when a Foley’s catheter was inserted, or a bladder wash was done, when blood pressure readings were taken, or nebulisation was given. Such instructions had to be repeated to the new nurses whenever their shift changed. Also, whenever a new doctor was given charge of my father’s care, we would have to convince this new doctor to instruct the nurses to allow us to be with father. This whole process would have to be repeated all the time.

The problem (the inability of staff to handle dementia patients, and hospital rules about not letting family members accompany patients) was acutely felt by us when my father was in the ICU, because the security guards did not allow us inside the ICU except during visiting hours, telling us it was against the hospital’s policy. We again needed the doctor’s intervention.

In one instance, my father had been asleep for over 72 hours continually and the doctor advised us that someone should constantly talk to the patient to wake him. So we were allowed near his bedside. But the ICU had no seats so my sister and I took turns to stand next to him all day for the rest of the week to keep talking to him in an attempt to wake him.

Even though we had some excellent doctors who communicated very well with us and clearly wrote down complete instructions, many a time nursing staff did not follow instructions either correctly or completely. Some forgot or did not understand the written instructions and some did not even understand English or Hindi. Had we not been proactive in our supervision of the treatment given, our father may not have received the treatment as prescribed. We did, however, come across instances of excellent nurses who went the extra mile to make my father more comfortable.

My general observation was that regardless of how grand (read expensive) or not the hospital, the staff in charge of patient hygiene (ayah/maushi, ward boys) uniformly displayed apathetic behaviour.

My general observation was that regardless of how grand (read expensive) or not the hospital, the staff in charge of patient hygiene (ayah/maushi, ward boys) uniformly displayed apathetic behaviour. They were not sensitised to patient’s comforts. They did as little as they could get away with, and they did it as cursorily as possible and only did the work after being asked to repeatedly.

…we decided that we would provide care at home for as long as possible and not move my father to a hospital unless unavoidable, because it was easier to handle all the work at home ourselves than to supervise the hospital staff.

After various experiences we had over the years, we decided that we would provide care at home for as long as possible and not move my father to a hospital unless unavoidable, because it was easier to handle all the work at home ourselves than to supervise the hospital staff. When my father needed IV injections, we appointed a nurse to come to our home and administer them.

Still, we did have to take him to hospital when he had status epilepticus in May 2011 (a neurological condition where the brain is in a state of persistent seizure).

My father was admitted to ICU, and the doctors discovered he had developed aspiration pneumonia and started the treatment for this also. He had always suffered from constipation, but during his time in the ICU, he had not passed any stools for over 10 days. None of the medicines or enemas worked. Even so, the nurses kept up with his nasal feed every 2 hours, resulting in his stomach getting bloated. We had to plead with the doctor to reduce the feed interval to 3 hours and also to allow me to do a manual removal of the stools.

At the hospital, the location of the IV device had to be changed daily as the vein would get damaged. My father’s arms had swollen up and he would cry out in pain during bolus injections. We were told his veins were very brittle so the IV fluids filled up in his arms making them look swollen. Despite his thin frame his arms looked very fat and his hands resembled rubber gloves filled with water. Even doctors said the swelling would diminish in a few days but as this was causing him a lot of pain, we specifically wanted something be done for immediate relief. Only on such insistence did the head nurse ask for glycerine and magnesium sulphate and apply bandages dipped in this mixture over his arms. Overnight, all the swelling came down as water seeped out through the pores on his skin.

When my father had recovered enough to swallow liquids on his own without the nasal tube, we got him home.

While we made sure he never had any bed sores at home, each time he was discharged from hospital he would have developed bed sores.

While we made sure he never had any bed sores at home, each time he was discharged from hospital he would have developed bed sores. The last time in May 2011 he had multiple nasty sores which we would meticulously clean and dress every day. After about 10 days they healed.

What sort of major decisions did you and your sister need to make with regard to the medical choices during the hospital stay? How easily was information available, and how were your discussions with the doctors regarding these issues?

The GI specialist advised us that he would have to place a PEG (percutaneous endoscopic gastrostomy) laproscopically or a jejunostomy tube surgically so he could be fed and when the nutrition improved the hiccups would cease. These are both “feeding tubes” that allow food to be poured into the stomach/ small bowels directly. The doctor spoke as if these involved just a simple procedure and were nothing to worry about.

In November 2010, my father developed severe hiccups. These hiccups were continuous, unstopping even when he was asleep. I timed it as one every 12 seconds. Home remedies gave relief for extremely short spans of time. As he was unable to eat or drink due to the hiccups, he had started getting dehydrated and this only made it worse. So he had to be admitted into hospital. The readily available muscle relaxants did not work. The doctor wrote down some other medicines which were not available at all anywhere in Mumbai. The GI specialist advised us that he would have to place a PEG (percutaneous endoscopic gastrostomy) laproscopically or a jejunostomy tube surgically so he could be fed and when the nutrition improved the hiccups would cease. These are both “feeding tubes” that allow food to be poured into the stomach/ small bowels directly. The doctor spoke as if these involved just a simple procedure and were nothing to worry about. He did explain these briefly but we were not convinced about the maintenance of such a tube and all that it involved so we did not agree to it immediately. We just asked for more time to think over and decide.

Luckily, with all the IV fluids and muscle relaxants he had been given, father had finally fallen asleep without hiccups, so we got him discharged and brought him home by ambulance. Though the hiccups continued intermittently, the muscle relaxants prescribed helped a great deal.

We read that bedridden patients who are put on this PEG have to be fed a special diet. We also read about how important it is to keep the tube and surrounding area on the stomach clean, and ensure proper dressing of the tube site, because otherwise the area can get easily infected. Additionally, with PEG, patients were at a risk of aspiration, bleeding, and perforation.

Researching on the Internet we found that PEG is usually suggested for patients who are unable to swallow, such as patients with throat cancer. These patients are able to use the feeding tube themselves and because their mental faculties are intact, there is no danger that the patients will get confused and pull out the tube. We read that bedridden patients who are put on this PEG have to be fed a special diet. We also read about how important it is to keep the tube and surrounding area on the stomach clean, and ensure proper dressing of the tube site, because otherwise the area can get easily infected. Additionally, with PEG, patients were at a risk of aspiration, bleeding, and perforation.

We tried to find out more about jejunostomy, where a tube is surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The jejunostomy would guard against aspiration because it feeds directly into the small bowel but we read about the danger of bowel obstruction and ischemia. Also my father was on anti-coagulants so we were not so convinced how well this would work for him.

We also read about another important issue related to the use of feeding tubes. We may have to take a decision to stop feeding if the patient were to go into a coma. After thinking about it, we realised this was not a decision we were ready to make if the eventuality arose.

He would most probably be in pain, would require many hospital visits, for the surgery, for removing the sutures, for changing the dressings, for changing the tube if there was a problem with it. He might tug on the tube and pull out his insides (shudder). On the whole he would not be happy and it was important to us to see that he was as comfortable as he could be.

Also, from what we understood, there was no guarantee that we could prolong my father’s life by using a feeding tube but the use of such a tube would definitely be a situation where his quality of life would be poorer. He would most probably be in pain, would require many hospital visits, for the surgery, for removing the sutures, for changing the dressings, for changing the tube if there was a problem with it. He might tug on the tube and pull out his insides (shudder). On the whole he would not be happy and it was important to us to see that he was as comfortable as he could be.

On another website that discussed end-of-life stages, we had read that the body starts winding down slowly by requiring less food and water so that the process of death is pain-free. (The phrase commonly used on such sites was “active dying”). We wondered if we were to actually force feed him through a tube (because he wouldn’t be able to refuse or spit it out as he did with oral feeds) then we might actually be causing him more pain at the time of death under the mistaken belief that we were helping him.

So we decided against placing a feeding tube (no PEG and no jejunostomy). He recovered slowly, progressing from being able to take some liquids to a stage when he could resume eating semi solids.

The last time he was admitted to hospital was in May 2011, when he was suffering from “status epilepticus” (epileptic seizures that did not stop until medical intervention). The ICU in-charge advised us that they may have to put him on ventilator if his breathing weakened. We clearly expressed our displeasure with this. Luckily, it was not required in his case. We had had unhappy first-hand experience of using ventilator in my mother’s case.

My mother had been my father’s primary caregiver. In 2005 she suffered from pyelonephritis and was on antibiotics for some weeks. One day she developed fever, had severe flank pain and vomiting so my sister admitted her to hospital. After four days of giving her painkillers and saying the pain would settle down and not to worry, the hospital transferred her to ICU and put her on ventilator because she had developed septicaemia and had basal creptitations. This was done without even informing my sister who was waiting outside the ICU. The ET tube in my mother’s throat was causing pain and my mother was fighting it, so the nurses had tied her hands to the bed rails. My mother couldn’t talk anymore but she was gesturing that she wanted it out. I arrived from overseas only the day after she was put on ventilator so she could not even speak to me. They kept her mildly sedated, but each time she woke up her eyes were filled with fear and pain. She developed ARDS and died the second day after my return. We did not want my father to undergo the same torture.

…in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments. When we were ignorant of some issues or exhibited any hesitation, doctors uniformly gave us patronising responses that were not sufficient to understand the treatment being given

One point that I wish to emphasise here is that in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments. When we were ignorant of some issues or exhibited any hesitation, doctors uniformly gave us patronising responses that were not sufficient to understand the treatment being given. They did not actively help us to understand enough to make a decision suitable for our situation.

What was your father’s state at discharge time?

The last time we brought him home from hospital, he had to be brought up in a stretcher and laid on his bed. He had lost all strength to even sit up, but once he realised he was home in his bed he was more relaxed.

He was in a very weak state due to the severity of the seizure he had suffered. Also, the anticonvulsants were at a higher dosage so he was mostly asleep and had to be woken up to be fed or given medicines.

We regularly massaged his back and legs with ayurvedic massage oil, and after some weeks he was able to stand up with assistance and transfer to a chair placed next to his bed.

Please describe how you handled care of your father at that stage. What were the major activities to be done, how did you handle them, what did you have to learn for that?

Though my father was emaciated, the effort required to turn, change, wash and dress him, etc., was telling on my back.

After getting him back after his hospital trip in May 2011, his care routine at home had to be changed somewhat. Though my father was emaciated, the effort required to turn, change, wash and dress him, etc., was telling on my back.

He could no longer stand on his feet (even with support) for some weeks after discharge from hospital. Whether this was the consequence of the status epilepticus episode or incorrect manoeuvring of his lower limbs by one physiotherapist while in the hospital (he had cried out in pain when she did it), we do not know. We had to resort to physically lifting him for transferring him to his chair or bed, or taking him to the bathroom. Luckily he had always had a thin frame and towards the end weighed less than 40 kilos.

Meanwhile, his bath time was changed to evening as I and my sister decided I shouldn’t do this on my own. My father always loved a nice hot bath. So we used to sit him in a plastic chair and pull the chair into the bathroom and give him a good wash.

He had lost many teeth in the last few months. He was already not able to rinse his mouth or spit out water. Earlier, I used to brush his teeth when he was in his bath chair so I could wash his mouth out even if he didn’t rinse and spit. Now with the changed bath times, I had to resort to the hospital method of cleaning his mouth with cotton, gauze, and Clohex.

A couple of years ago we had purchased a recliner that he loved sitting in. Alternating him between the bed and the recliner helped distribute the body weight differently so the bed sores he had developed in the hospital healed soon with treatment. Also his head would bend too much to the right, almost touching his right shoulder, and this probably gave him a painful neck too. We used a neck pillow and rolled up duppattas to function as support on his right shoulder to keep the head in a more natural position.

Food was as usual liquid or semi-solid and fed to him carefully, spoon by spoon. He was dribbling more than before. We powdered all capsules and tablets using a mortar and pestle, and mixed this powder in a syrup and fed to him while holding his head straight.

His problem with constipation continued. Purgatives, laxatives, enemas, suppositories were of no use. …. toilet times would run into hours at the end of which all 3 of us would be exhausted. We frequently performed a manual removal of his stools to ease his discomfort.

His problem with constipation continued. Purgatives, laxatives, enemas, suppositories were of no use. He could not strain so sometimes his anus would remain dilated for hours without passing the impacted stools. He had been prescribed a very high dosage of laxatives. Still toilet times would run into hours at the end of which all 3 of us would be exhausted. We frequently performed a manual removal of his stools to ease his discomfort.

How supportive or otherwise did you find the systems around you at this stage?

Let me give one example to show how difficult it was to get what we needed to care for my father.

We wanted a wheelchair for him that would suit our requirements. My father had a tendency to lean to his side when seated and fall off any chair unless he was secured with seat belts we had fashioned ourselves.

Unfortunately we did not find a single wheelchair in the city of Mumbai that fit these specifications.

So any wheel-chair we got for him needed to have arm rests that were high enough to secure him and prevent him falling over, and sturdy so as not to topple. We also wanted it to have a removable seat that could function as bath/potty chair. And we did not want the chair to have sharp edges like many cheap imported chairs do.

Unfortunately we did not find a single wheelchair in the city of Mumbai that fit these specifications. On the Internet we did find a factory near Chennai that manufactured something similar, but my father passed away before we could get it for him.

How was your father responding to you and your sister throughout this? Please describe any special emotional moments/ incidents.

My father had specialised in non-verbal communication. He would blink his replies ever so slightly even when he would be staring into the distance and he would never answer the same question twice. So we had to be very careful about noting his response! But in the last couple of months, even such replies were rare.

Sometimes father would slowly reach out and pat our arms when watching TV or having his food or if we were just chatting with each other. Sometimes I would lean over and place my cheek close to his mouth so he would give me a small peck on my cheek, and then I would show him the other cheek, he would give me a peck again, and for the third time I would show him the first cheek.

While he sat in the recliner, we would sit on either side. Sometimes father would slowly reach out and pat our arms when watching TV or having his food or if we were just chatting with each other. Sometimes I would lean over and place my cheek close to his mouth so he would give me a small peck on my cheek, and then I would show him the other cheek, he would give me a peck again, and for the third time I would show him the first cheek. Sometimes he would comply and sometimes he knew I was being silly and he would just not respond .

My father, though incontinent, would sometimes not pass urine for an entire day. Before bedtime, we would ask him to do so because we needed to change the condom catheter and urine bag. Often he was able to comply, which proved that he could still understand what we said.

He just started bawling out loudly. He had earlier sobbed like this only on the day when he realised that my mother had died. They were gut-wrenching sobs.

In the last few days of his life when he was unable to stand up, one day after picking him up and putting him in the chair, I was out of breath and stood up straight to take a deep breath. He just started bawling out loudly. He had earlier sobbed like this only on the day when he realised that my mother had died. They were gut-wrenching sobs. Though I instinctively felt he was crying out of fear of what was to come, I consoled him saying, we are doing the massage with the oil so he would will be able to walk again, don’t worry, we will take care of you, etc. He understood that I was trying to console him and stopped crying. But it did show how much capacity of comprehension was still in him though he was unable to talk or to respond to us.

We always told him he was the best appa in the world and on the days he could comprehend, he would smile back.

We always told him he was the best appa in the world and on the days he could comprehend, he would smile back. Singing his favourite songs always brought tears to his eyes.

Please describe his last few days and how you coped with them.

We thought he was getting over the health slump because in his last week, he showed some improvement physically and in his responsiveness. After his daily exercise and massage, he was able to stand on his feet for a few minutes (with support). We even started walking him to his chair instead of carrying him. We had actually reverted back to the pre-hospital visit routine of caregiving. I thought things were finally getting back to normal. In fact, I tried to schedule a dentist appointment for him on the Sunday before he died.

He developed ‘purpura’ – bleeding spots under the skin. There were spots on his chest, hands and even soles of his feet had black and blue spots. I just took them to be bruising that may have happened accidentally though I couldn’t think of when they may have occurred. I later read somewhere that this is an end-of-life sign.

What finally caused his death, and how did you handle those last few activities?

Cardio-respiratory arrest is stated on his death certificate as cause of death.

Working in the kitchen that morning, an irrelevant thought came to my mind as it always did each year on 21st June – ‘Benazir Bhutto’s birthday’. I used to bathe him in the afternoons because it was warmer then. The rest of the day was unremarkable. Around 7pm he had his drink of Complan. My sister came home later around 7.30pm. He did not smile but looked at her intently. His face was flushed but we didn’t think much of it. She would usually sit and talk to him before she went in to freshen up. That day, she decided to shower first before sitting down with him.

I was busy working at the computer and he was watching TV. Around 8pm when I went to adjust him in the recliner, I found him gasping/snoring/shivering. First I thought he was asleep and feeling cold so got him a blanket. Then, he didn’t wake when I moved him and his lips were turning blue so I started blowing air into his mouth. I did not know how to do a proper CPR (cardio-pulmonary resuscitation, the emergency procedure to restore blood circulation and breathing). I asked my sister to take over and started calling the doctors. No one was able to come immediately. So I had to call the ambulance.

We kept calling to him, blowing air into his mouth, gently massaging his chest. Only at that time we did not know that we also had to do chest compressions. Soon there was a long pause in his heart beat. But we persisted with our efforts and when his heart beat returned there was a tremor in his whole body.

We wasted over an hour waiting for medical assistance. Meanwhile I took his BP and it had fallen to 54/40. We kept calling to him, blowing air into his mouth, gently massaging his chest. Only at that time we did not know that we also had to do chest compressions. Soon there was a long pause in his heart beat. But we persisted with our efforts and when his heart beat returned there was a tremor in his whole body. His face was ashen.

The medics came up with just a stethoscope. We had to stop the CPR and step back to allow them to look at him. Further CPR was not continued. When I asked if they had oxygen, they said it is available in the ambulance. They waited to get the stretcher upstairs and then transfer him to the ambulance. All this while, they did not do any CPR.

By then the ambulance arrived. The medics came up with just a stethoscope. We had to stop the CPR and step back to allow them to look at him. Further CPR was not continued. When I asked if they had oxygen, they said it is available in the ambulance. They waited to get the stretcher upstairs and then transfer him to the ambulance. All this while, they did not do any CPR. In the ambulance an airway was put in his mouth and oxygen with face mask was administered. There was no heart beat registered. Once in the ambulance, the medic constantly gave him chest compressions. The hospital was a half-hour drive away and all the way the monitor showed a flat line. I wish the medic had carried an ambu bag (used for pumping air into his lungs) at least, if not adrenalin when he came to the house to attend to our emergency call.

Finally at 11pm the resident doctor came out and wanted to speak to a male relative. I had to say that he had to talk to me only but he remained silent.

At the hospital as usual we were asked to wait outside the doors. Finally at 11pm the resident doctor came out and wanted to speak to a male relative. I had to say that he had to talk to me only but he remained silent. So I had to ask him if they could get a heartbeat and he answered in the negative. I asked him if he was dead and he said yes. I had to keep probing for what next. They said he was dead before admission so we would have to take him away for post mortem to a government hospital by a private ambulance. I had already called up the cardiologist and kept him informed all the while. He arrived soon enough and issued his own death certificate sparing us the post mortem rigmarole.

We wanted to donate his eyes and asked the hospital to arrange for this. They would not. They wanted us to take him away to a government hospital and call the ‘sanstha’ ourselves. We couldn’t be bothered with the hassle of it at all as it was after midnight. We informed our relatives who insisted that we leave him in the morgue overnight because they were not able to come immediately. At that time we were like robots and did as instructed and without thinking. In hindsight, we feel it might have been better to bring him back home for the religious rites. We still feel we did not do justice to him at the end as he was a very religious person.

Before the ambulance arrived that late evening, it did not even cross my mind that my father was actually dying. I just thought it would be another trip to the hospital and I had quickly packed the usual items required for overnight stay there…Our one consolation is that his death did not occur in a hospital where we were not allowed by his bedside. He had died at home, with us around him, even though we did not realize it when it happened.

Before the ambulance arrived that late evening, it did not even cross my mind that my father was actually dying. I just thought it would be another trip to the hospital and I had quickly packed the usual items required for overnight stay there. I wish I had paid more attention to the signs, recited a few shlokas and given him the ganga jal that one well-wisher had already supplied us a bottle of.

Our one consolation is that his death did not occur in a hospital where we were not allowed by his bedside. He had died at home, with us around him, even though we did not realize it when it happened.

After spending so many years looking after him, and with such intensity, how did you cope with his absence? How did you come to terms with the loss, and start building up your life again?

I had chosen to suspend my career to stay home and be a caregiver. Now that I had no more caregiving to do, I missed it terribly. I missed the routine. I missed his company. I missed having someone to speak to during the daytime, even if it was as superfluous as telling my father, “Look at that tree” or “There is so much traffic today”.

At first, it seemed unreal. In the days following his death, even as I was out shopping for the items required for the after death rituals my mental alarm would go off and tell me that I had been out over 2 hours and he was alone and would need me. Then another thought would remind me that he had died and I did not have to rush back.

After the rituals, the relatives departed and suddenly there was nothing for me to do. I had chosen to suspend my career to stay home and be a caregiver. Now that I had no more caregiving to do, I missed it terribly. I missed the routine. I missed his company. I missed having someone to speak to during the daytime, even if it was as superfluous as telling my father, “Look at that tree” or “There is so much traffic today”.

I feel guilty that I did not know about chest compressions and that I totally forgot to give him Sorbitrate which may have saved him that day and also not having had an oxygen cylinder handy.

All these years we never really considered his dementia as an illness – just as an altered state. So I did not actively look for help online for dementia. Only after I missed him so much and began replaying all those years in my head, I realised that we should have done much more and sooner.

Looking back, how do you think this whole caregiving journey has changed you as a person? How has it changed your life and priorities? Now that caregiving is behind you, what of it remains prominent in your mind?

In the early stages of my father’s illness I was an impatient person. I had had fights and arguments with him that I now realise were totally unnecessary. I may have contributed to his increased stress levels at that time. Only over time did I realise that my father was trying his best to cooperate and he could not help his condition. I wish I had known all this at the start so I would not have so much to feel guilty for now.

Then father’s condition worsened and caregiving was a circumstance that I had to accept. At first I was not particularly happy being home all day … I was squeamish about some things that caregiving involved and it took me some time to grow into it, to accept it and to think nothing of it.

Before I became a caregiver, I was responsible only for myself. I was career-oriented, and needed to fulfil all my wants and desires. Then father’s condition worsened and caregiving was a circumstance that I had to accept. At first I was not particularly happy being home all day but this was a necessity and also my duty to my family. I was squeamish about some things that caregiving involved and it took me some time to grow into it, to accept it and to think nothing of it.

…I see no reason why the people living in our country should lack the social infrastructure that exists in the developed world today.

Death has touched me twice, both times when it was least expected. When life is so unpredictable, the least one can do is try to make it a comfortable one. I have spent many years in the West and I see no reason why the people living in our country should lack the social infrastructure that exists in the developed world today.

My outlook to life has changed because of these past few years. I am no longer interested in 10 hour workdays and the mad rush that leads nowhere. I want to fill my days doing things I love and things that mean something in the long run.

Thank you so much for sharing this very touching phase of your life, Vijaya, and also sharing so much information.

[Click here for the list of all caregiver interviews]

When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law

admin — Wed, 26 Oct 2011 05:23:55 +0000

Neena (name changed), a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. An earlier interview of the care (when the mother-in-law was not bedridden) is available here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.[note]

Please describe the circumstances that led to your mother-in-law becoming bedridden.

Ma is now 86 and suffers from multiple medical conditions, including heart problems, osteoporosis, Parkinson’s Disease, and dementia.

Getting her (Ma) to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times

Over the last few years, she had become increasingly dependent on the hired help for walking, and also grown very scared of falls. When she was taken for walks or to the bathroom, she often got confused about how to lift her legs to walk, and her legs would get sort of locked, and she had to be repeatedly prompted about which leg to lift, about moving the leg forward and so on. When our regular help went on leave and we had a substitute helping Ma, this substitute did not know how to handle Ma at such times, how to coax her to walk and so on, and others had to help. Multiple instructions often confused her even more and she would completely stop movement and her body would become stiff. Getting her to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times and this was a huge task as Ma had become heavier with absolutely minimal exercise!!

We realized that something was majorly wrong. My husband carried her (Ma) to her bed and we made her comfortable. Later we realized after talking to the doctor that she probably had a stroke at that time!

It was around that time, that one day we had just come back home from a lunch when the ayah was screaming for help. Ma was in the process of walking back to her bed from the bathroom. My husband, me and my kids rushed to her room to find her about to fall with the maid hanging on to her and unable to manage to keep her upright. She was foaming at the mouth, breathless and trying to vomit! Her entire body was shaking, perhaps a combined effort of the stress and Parkinson’s Disease. We managed to get her onto a chair which was now kept halfway from the bed and bathroom door. She was gasping for breath and collapsing. We realized that something was majorly wrong. My husband carried her to her bed and we made her comfortable. Later we realized after talking to the doctor that she probably had a stroke at that time!

…she (Ma) had perhaps tried to walk to the loo, her memory totally blank that she was now unable to do that unattended. She fell headlong with a heavy thud.

Then one day, very unexpectedly, Ma tried to get up on her own and fell down at 4a.m. We still do not know what exactly happened, but whatever Ma did was very silent and deliberate. Her bed clothes were folded neatly to the side and she had perhaps tried to walk to the loo, her memory totally blank that she was now unable to do that unattended. She fell headlong with a heavy thud. The attendant, a very competent and sincere person who never slept off on her night shift, realized what happened only when she heard Ma fall.

Ma’s head was bleeding, and though we tried to stop bleeding, the wound on the head, which started as a small one, seemed to swell and form a large bump. We called for an ambulance and took Ma to the hospital.

It was only in the hospital that we learnt that Ma had also suffered from various fractures and dislocations, all on her left side.

It was only in the hospital that we learnt that Ma had also suffered from various fractures and dislocations, all on her left side. Her shoulder and wrist bones had fractures. Worse, the head of her femur had come out of the ball and socket joint and had got dislocated from the socket, and lodged itself elsewhere.

The doctors refused to operate on Ma to set things right, given her age (“she’s too old”, I was told) and medical conditions. Instead, they placed her on traction. She was in the hospital for some three or four days, a hectic and expensive stay, and we were expecting that the stay would be continuing till Ma improved. Ma was now completely bedridden and on traction, a 3 kg water weight tied to her ankle and kept in place with a crepe bandage.

Then, one day, the doctor told me I had to take Ma home and take care of her at home.

Please describe how you prepared your home for the care of your bedridden mother-in-law. What did you put in place before bringing her home from the hospital?

I was stunned and overwhelmed when I was told that I would have to take Ma back home in that helpless state with traction and tubes sticking out of her, and that I would have to take care for her at home. I had no idea what such care involved. She had a Ryles tube in her nose, a catheter and a traction.

…the doctor calls me to say that I have to move Ma out of the hospital immediately because he had to go out of town, and he did not want her to stay in the hospital in his absence.

One morning, I go to the hospital, expecting another “normal” hospital stay day, and the doctor calls me to say that I have to move Ma out of the hospital immediately because he had to go out of town, and he did not want her to stay in the hospital in his absence. He felt more hospital stay would not help Ma anyway. Treatment was expensive, and nothing more could be done, and the doctor said that if he was not there and Ma continued in the hospital, the other doctors would place her on ventilator and all that, which would not help. I finally agreed that I needed that day to make arrangements and would take her the following day.

The doctor who insisted that we take Ma home was the physician who had been handling Ma’s care for over four years and knew her well. The orthopaedist at the hospital also concurred with his view that she should be taken home. In a way they indicated that she did not have much time so we agreed.

I had no option but to get ready for home care within a few hours. It was a huge challenge.

The next several hours were really very tense and busy. I asked the doctor what equipment I would need and used a contact number he gave to reach an equipment supplier. I needed to buy an air mattress (to prevent bed sores), and to hire a hospital bed and an oxygen converter (an equipment that converts water to oxygen, which was needed as Ma was having breathing problems and may need to be given oxygen ). Prior to this, I hadn’t even known what such equipment looked like, why they were needed, and how they were used. There was no time to find out about other suppliers or compare quotes or brands; I needed to get these things right away, and was extremely relieved that the supplier I had contacted was helpful.

I later found out that he was the sole supplier in such a huge city.

With Ma on traction, it would be impossible to turn her for weeks altogether, and I was clueless on how we would maintain her hygiene and prevent bedsores. Or, given that Ma was on traction, how much should I crank up the bed to make her upright given that her femur had been dislocated.

I spent the next few hours talking to an assistant in the orthopaedic department, trying to find out what I needed to know. I tried to understand what exactly traction did, how it helped in fractures, and so on. With Ma on traction, it would be impossible to turn her for weeks altogether, and I was clueless on how we would maintain her hygiene and prevent bedsores. Or, given that Ma was on traction, how much should I crank up the bed to make her upright given that her femur had been dislocated. I kept asking the assistant questions, and was lucky that the assistant answered my questions patiently and in detail. A male nurse gave me some detailed and practical advice on how to handle the actual hygiene part, cleaning up soiled parts, changing sheets, clothes, etc., positioning pillows and so on

These were very packed discussions, but at the end of them, I was slightly more comfortable about handling the care. I don’t know what I’d have done if the assistant had been less helpful. God bless him.

The other problem that needed immediate work was actually setting up home for Ma.

Ma’s room already had plenty of furniture — a double bed, dressing table, and so on. There was no place to fit a hospital bed.

Ma’s room already had plenty of furniture — a double bed, dressing table, and so on. There was no place to fit a hospital bed. I rushed home and tried to get a carpenter to dismantle the existing double bed, but was unable to find a carpenter, so I requested a couple of drivers working in various apartments in the building to move the bed to a side, and also move around the rest of the furniture. Later, I discovered that they had broken the bed while moving it.

The equipment supplier, fortunately, kept his promise and was prompt in sending the bed and other equipment. By evening that day, Ma’s room was ready.

Honestly I did not know what I was thinking. I just knew I had to go ahead.

My husband had to go to work the next day as he had several important meetings and I had to get Ma discharged and get her home. As we finally got her onto a stretcher to take her to the ambulance she screamed in pain and I could not stop the tears that kept coming. What would I do? How could I handle her and not give her any pain? A passerby saw me and was probably wondering at my insanity in taking such a patient home. But I told myself that I would be happy to have her home in her last few days and did not really want her to die in the hospital. Honestly I did not know what I was thinking. I just knew I had to go ahead.

Ma was home, bedridden, installed on an air-mattress on a hospital bed, in a room hastily prepared for her care. We already had enough plastic sheets and some other required supplies, so that was a relief.

Ma had been placed on catheter for her urine, and a Ryle’s tube had been inserted through her nose directly into her stomach for her feeding, because she was supine and could not be fed through her mouth. Because of these, I could not handle the work alone or with the help of a normal attendant; I needed a nurse.

It was only later that I realized that the physician had not expected my mother to live for more than one or two weeks, and even the orthopaedist had been sure that the chances of her surviving beyond four weeks were extremely low.

It is now over four months since that happened, and Ma is still very much with us.

Please describe some of the challenges you face in the actual care for your mother-in-law.

… she (the nurse) was working the night shift in the hospital and then expecting to work the day at my home and earn some more money; naturally, she was sleeping instead of working.

There were plenty of glitches in the beginning. We had a nurse for the day shift, and a full-time help also, because moving Ma on the bed, or cleaning her, could not be done by one person alone. But the first nurse we got used to sleep off, and it was after a couple of days that I realized that she was working the night shift in the hospital and then expecting to work the day at my home and earn some more money; naturally, she was sleeping instead of working. She would also stand on the bed to haul Ma up roughly, and I had to find a replacement.

Friends came in to help and I got an excellent nurse agency who sent me a very competent nurse. I was thankful for such mercies and thanked God and my friends.

A major problem we faced was because of an unexpected complication in the traction. Ma had a crepe bandage to keep the ankle frame in place. Nothing was said about this in the checkups the physician and orthopaedist did at home in the first few weeks. Then one day, the traction contraption moved, and the nurse said she would undo and redo the crepe bandage to correct it. To our shock, when we opened the crepe bandage, we saw a very large and ugly wound there. It was awful. It was nauseating. I almost threw up right there. Ma had always screamed when we would try to move her, but we hadn’t known that this was also because of this awful wound. /p>

Though Ma’s hip was still not okay, the traction had to be removed. Yet, even after we removed the traction, and though we are regular in cleaning and bandaging the wound, it has not healed.

The doctors said that with such a wound, continuing with the traction was not possible. Though Ma’s hip was still not okay, the traction had to be removed. Yet, even after we removed the traction, and though we are regular in cleaning and bandaging the wound, it has not healed. The whole area is black, which is unhealthy because we have no idea what lies underneath, and the damage could be reaching the bones, and we have no way to stop it. One of our additional activities now is cleaning the wound and bandaging it using sterile bandages and so on, as advised by the doctors. But we still don’t know how serious the damage under it is, and at what rate it is growing. All we know is that Ma is in great pain whenever we move her, partly because of whatever is there in this area, and partly because of the unhealed hip (which will probably never heal now because we cannot place Ma on traction).

We also face challenges in managing Ma’s Ryle tube and her catheter.

Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back. I don’t know how we passed those hours!

Ma would keep pulling out the Ryle tube with her right hand, which was free. She would first remove the bandage securing it, then slowly pull it out when no one was watching, for example when the attendant had gone out for her lunch or to have a bath or something. We had to tie her hands with a soft cloth to the railing for the short durations when we were not in the room. Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back. I don’t know how we passed those hours! Now, a new nurse has found a better way of fixing the tube in place and Ma does not try to remove it as often. But there are still complications, like sometimes we see some sediment in the tube, and once there was blood.

Because Ma does not take any food or liquid through her mouth, her mouth remains dry, and we have to make sure we moisten it. Her lips sometimes become red and swollen, and it looks very alarming.

The catheter also causes problems at times. Some of the nurses sent by the agency are not very skilled at handling it. Keeping Ma hygienic in spite of the catheter requires special attention. Diaper rashes occur sometimes. We have to be very alert all the time because of all these complications.

Does your mother-in-law communicate her needs to you or the attendant/ nurse?

Ma has Parkinson’s, which means that her head keeps bobbing, and even her eyes keep darting around, and we cannot make out what object she is looking at. She cannot focus her eyes, and one eye seems to constantly move to the ceiling. This makes it difficult to know what she is thinking about, or what she wants.

Mostly, Ma is unable to express her needs. She screams when we try to turn her or clean her, probably because of the unhealed fracture and also the wound in the ankle, and we can do nothing about these two problems. We do need to move her to prevent bedsores and also take care of the hygiene, and we also need to make her sit up slightly sometimes, and she is obviously in great pain every time we try to do that. Sometimes, she manages to say that we should let her alone.

When I sit with Ma, she sometimes grips my hand hard and tries to speak. She may blurt out something, which I may or may not understand. If I coax her to talk, or ask her to explain, she is usually unable to answer.

Most of the time she does not communicate, but there have been some occasions when she has not just said something, but amazed us with her clarity. Then she lapses back into silence for days again.

Please share how your mother-in-law interacts with you and other family members.

It was very disturbing for the children to see their grandmother struggle to say her usual God bless you, and Ma would also look very distressed that she could not speak.

Earlier, when Ma was still talking, my children used to always peep into her room before going to school to tell her they were going, and she’s wish them well and say, God bless you. They continued to do so after her becoming bedridden, but things had changed. Ma was obviously finding it very difficult to bless them, and she would struggle to talk, and that would take time. It was very disturbing for the children to see their grandmother struggle to say her usual God bless you, and Ma would also look very distressed that she could not speak. The children could not keep waiting too long, as they would get late for school. Over time, the children stopped going to say goodbye before leaving for school.

My daughter is very emotionally attached to her grandmother, and would often go in to talk to her, hug and kiss her. But I notice that the child looks very disturbed every time she emerges from Ma’s room, and has reduced her visits. I think seeing someone so helpless and in such pain is very distressing.

My son, who is younger, is more uncomfortable because of what he calls “too many wires” around his grandmother.

Ma is often sleeping, anyway, and even if someone goes to her room, the chances are that they will find Ma asleep. My husband often finds that he is unable to catch her awake, though he tries to talk to her when he can, especially just before he is going out of town. However, because of the situation, his visits to Ma have also reduced. Seeing her in pain, unable to communicate, is very difficult for all of us.

But there have been some special occasions when she has managed to connect with us…

I stay at home and coordinate her care, so I end up spending the most time with her. Often, when I see Ma struggle, I get very disturbed.

But there have been some special occasions when she has managed to connect with us…

Can you share some of these special moments?

Sure.

My husband then asked her whether she’d wish my son, and Ma not just wished him, she actually sang the line Happy Birthday to you a few times! It was absolutely amazing.

Ma was always very particular about celebrating birthdays and giving gifts on birthdays. Recently, for my son’s birthday, I bought a card for him on her behalf and wrote her name on it, and we waited for her to wake up so that she could give it to him. She finally seemed alert enough in the evening, and we called in my son and told Ma it was his birthday. I gave her the card to give it to him, saying it was his birthday. Ma actually took the card from me, said, Yes I know, and held it out to my son. My husband then asked her whether she’d wish my son, and Ma not just wished him, she actually sang the line Happy Birthday to you a few times! It was absolutely amazing.

Another time, my husband told her he was leaving town for a tour, and she surprised us all by asking him when he would be returning. He told her. She then put out her hand to shake his hand. He shook hands, and told Ma, Take care, and she replied, Take care.

These sort of moments are very rare. After them, Ma slips back to her uncommunicative mode for days, but for those few moments when such things happen, it seems to us that she is just the same, that there is nothing wrong.

And then she is back to her silence, only screaming in pain, or saying garbled things no one can understand, or looking at me and grabbing my hand, and being unable to speak.

What about other close relatives? How have they responded to this situation?

The brother (who resides in another city in India) asked us to show him Ma on Skype after we brought her home, but he has not managed a visit to see Ma in the last four months.

My husband has an elder brother, who was informed of the deteriorated situation the very day when Ma fell down. The brother (who resides in another city in India) asked us to show him Ma on Skype after we brought her home, but he has not managed a visit to see Ma in the last four months.

My husband’s elder brother gets in touch once in a while with my husband to get status updates on Ma but has not yet asked us how we are coping. When I contacted one of his children on a birthday to wish her, the child asked me how I was, and I said, you know your grandmother is not well, so things are difficult, the child said, oh ya, my parents were saying something happened, what happened? I don’t think the children have registered the magnitude of the problem Ma is facing. Perhaps it is because they are at a distance, and hearing about something is very different from experiencing it up close.

We heard from a relative that my brother-in-law felt that, “What’s the big deal about what they are doing for Ma? Everyone looks after parents. And why are they spending so much money, why can’t they just get someone from a village and train her? That’s how people do it.” This relative told him, “Do you even know what it takes to look after someone like your mother?” and suggested that he come and stay with us for a few days to see what caregiving was like, and how much skill it took. Unfortunately, my brother-in-law has not yet managed a trip to see the situation and judge for himself.

I don’t know whether this (brother-in-law’s) reaction is because this whole situation is so alien and uncomfortable to him, or whether he underestimates the entire situation and its impact on us but whatever the reason, his contact is minimal.

We feel let down by my brother-in-law’s reaction. I don’t know whether this reaction is because this whole situation is so alien and uncomfortable to him, or whether he underestimates the entire situation and its impact on us but whatever the reason, his contact is minimal. His wife also has not called to ask me how I am coping.

Ma has noticed the absence of her eldest son. She sometimes calls out his name when in pain, but when I ask her about it, she clams up. When I asked her, do you want to speak to him, she said a firm NO. I asked her, are you angry, and she again said, NO. On Ma’s birthday, when this son called, she did not utter a single word. I think she senses something and feels hurt.

Tell us some more on what a day’s care involves.

Ma usually doesn’t’ sleep at night, but dozes off in the morning, and many times during the day. We do not wake her up if she is sleeping.

We feed her 50ml of liquidized food, milk etc. every 2 hours through the Ryles tube. Other activities include the diaper change, sponging, etc. All such activity tires her and she sleeps off again.

We feed her 50ml of liquidized food, milk etc. every 2 hours through the Ryles tube. Other activities include the diaper change, sponging, etc. All such activity tires her and she sleeps off again. Movement is painful to her, but we have to do that to the extent needed for preventing bedsores, feeding her, or cleaning her.

Usually, when we try to visit her, she is sleeping, but I do manage to see her awake at times. She may hold my hand and try to talk, as I explained earlier. Because of her Parkinson’s, and her constant moving of her head and eyes, it becomes very difficult to communicate. She is usually not coherent enough for me to understand what she is saying.

How are you managing all this care work? How do you coordinate it, and get whatever you need for it?

We need two persons as Ma cannot be moved by one person given her fractures and also her Parkinson’s. Also, a nurse is needed because there are many nursing tasks like cleaning and bandaging, handling the Ryle tube and the catheter, and so on.

I have two persons working with Ma; one is a nurse who works from 8am to 8pm, and one is a full-time attendant who lives in that room. We need two persons as Ma cannot be moved by one person given her fractures and also her Parkinson’s. Also, a nurse is needed because there are many nursing tasks like cleaning and bandaging, handling the Ryle tube and the catheter, and so on.

Sometimes, even though there are two persons, I need to help in the physical work. Sometimes, when one of the two hired carers are on leave, I have to participate more actively. Ma has to be held on one side by one person while the other does the cleaning, but because Ma’s bones are broken, her body is crooked and contorted, and she also slides on the bed, and we have to straighten her and pull her up, while trying not to hurt her too much.

I also have to make sure that these two hired carers (nurse and attendant) get their required meals and tea and biscuits in time.

We have other household help, too: a maid for the cleaning and cooking, and a driver. When this household maid is on leave, I have to do the housework not just for the house, but also for the nurse and attendant employed for Ma’s care. For example, the cooking. While our family may have handled the absence of the household maid by eating out, because of the nurse and attendant, I have to make sure complete meals are cooked for each mealtime, and there are also the intermittent tea and biscuit breaks. It gets very tiring and frustrating for me.

Ma’s care requires a lot of supplies. Our chemist who earlier did not keep such supplies, now maintains stock for all we need, like urobags (where the urine collects for draining out), catheters, diapers, Ryle tubes, syringes of various sizes, all sorts of sterile bandages, etc. Care for Ma is also very expensive, currently costing us almost Rs. 70,000/= every month. It is so high partly because Ma needs so much equipment and supplies, and trained attention including nursing attention. It is possible that if I had the time to look around and compare prices and suppliers, I could get some supplies slightly cheaper, but where is the time? Also, the agencies supplying attendants and nurses charge very high, but it is so difficult to get proper help and again, how can I go about looking for it, and how can I risk trying out new things with Ma being in this state?

The presence of two helpers all day long is also intrusive in our family life. They jabber and chat all day, and I sometimes have to tell them to be quiet, there is a patient in the room…

Tell us more about how this caregiving and responsibility affects you.

As I said earlier, the doctors had not really expected Ma to live beyond a few weeks. When, after a couple of months, the orthopaedist heard that Ma was still alive, he said I must be doing a really great job of caring. The physician said something similar. To me, these were not compliments. All I wonder is, did I do right, am I doing right by taking such good care as to prolong her life, when she is in such pain and so dependent. But on some days, when she talks, it seems that I am doing the right thing.

Seeing her defenseless and dependent now, being undressed by others, sometimes lying there like that while the nurse and attendant arrange the sheet or clean her and all that, makes me wonder what Ma must be feeling; how does she handle it?

Often, I get really disturbed watching Ma. Earlier, Ma was very particular about remaining well-groomed; her sari was always properly draped, and she was always trim and smart. Seeing her defenseless and dependent now, being undressed by others, sometimes lying there like that while the nurse and attendant arrange the sheet or clean her and all that, makes me wonder what Ma must be feeling; how does she handle it?

When Ma screams in pain, I feel very emotionally disturbed. Others in the family also find her state distressing, but they can reduce their interactions. However, as I stay at home and coordinate her care and am directly responsible, I cannot stop going into Ma’s room because I am distressed. I have to help in all the activities often, and even when I come out of Ma’s room, that scene keeps running in my mind.

Just a few days ago, I came out and sat on the living room sofa, switching my mobile to silent, unable to think or do anything. I just stayed sitting silently for a long time.

Just a few days ago, I came out and sat on the living room sofa, switching my mobile to silent, unable to think or do anything. I just stayed sitting silently for a long time. When my husband came in after a while from work, he thought I’d slept off on the sofa, but I had just been numb.

At one point, I reached a state when I felt I could not handle it, and I briefly even thought of using a nursing home, but the few I visited were such dismal places, I felt I can’t put her there, and that I would be able to manage it better at home.

The helplessness of caring for someone in this state, and the way it has taken over my life has left me feeling inadequate in many ways. I recently developed the carpal tunnel syndrome, and found I could not even chop vegetables. The cook/maid was on leave, and I had to hire someone to come in to chop vegetables and make roti; she charged Rs.1000 for that, and I felt very helpless and incompetent. Just a few years ago, I was an excellent multi-tasker, managing my career, the home, and my kids, and staying cheerful, and now I could not even chop vegetables!

…I have taken up walking regularly and I do Buddhist chants to calm myself. These help. In fact, my husband often reminds me to go for my walk…

I know I cannot afford to remain like this, and so I have taken up walking regularly and I do Buddhist chants to calm myself. These help. In fact, my husband often reminds me to go for my walk, and I think it is because he knows that I will be frustrated and in a bad mood if I do not take my daily walk. Also, to my surprise, some of the ladies in adjoining apartments joined me in my walks , and were very supportive about what I was doing. Everything has helped me keep my sanity.

Recently, I also took on a short management consulting assignment in an NGO and it really helped me feel useful and competent again.

What about the future? Have you and your family discussed how you will handle further deteriorations in your mother-in-law’s state?

We have talked about it, yes. None of us want Ma to be in pain. On one level, when we talk of it, we all say that we do not want to prolong her misery.

But I am really not sure what we will do when there is an illness or emergency.

At that time, would we not feel, as her children, that we must do whatever we can? My husband is her son, and won’t he want to rush her to a hospital and do whatever the doctors advised, even if it seemed to prolong her life in her state of agony?

if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.

I do not want Ma in pain, and while I am taking care of her to the best of my ability, rationally, I feel I am willing to let her go. But if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.

It is very difficult to know what we will do when the situation arises.

Any final words?

The only consolation sometimes is that she still has family and grandchildren around her and we have given her something to be happy about. Her eyes still light up when she sees the kids.

Very often I have wondered what could Ma have done so wrong that destiny had so much pain written for her . Not only physical but emotional too. I have been married for nearly 25 years now and have always seen Ma bending backwards to please family and friends, to be helpful and stand by them in need. Then why this….. And as a mother myself I cannot fathom the pain her heart feels knowing that her elder son and her favorite always has not bothered to come and see her and comfort her. Nor the three granddaughters who she loves so dearly. The only consolation sometimes is that she still has family and grandchildren around her and we have given her something to be happy about. Her eyes still light up when she sees the kids.

Thank you very much for this detailed interview, Neena!

[Click here for the list of all caregiver interviews]

Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

admin — Sat, 22 Oct 2011 15:25:15 +0000

Mala (name changed) has a mother suffering from Alzheimer’s Disease, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt.[note]

Please share something about your family.

Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.

We are three siblings; I have two elder brothers and I am the youngest. Our family is an upper middle class family, and we are all educated and pursuing good careers. Daddy retired over a decade ago, and Mummy was a home maker. All of us currently live in the same city; my eldest brother and his family lives at some distance, my other brother and his family live next door to my parents, and I live with my in-laws just a few minutes of walking distance.

Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.

Tell us about your mother before the symptoms started.

Mummy was what we would probably call an ideal homemaker. Though a graduate who had worked for some years, she was happy to leave her job and switch to full-time home making. My father, a quiet man, worked at his job, earning money. Mummy was the one who was always there for us, her children, when we were younger. She loved to cook for us. She was very social, and was prominent within our community for her participation in various group activities. She loved oil painting, and also helped with managing the society club administration, and was always volunteering to help in this thing or that.

Please describe when and how she started changing.

I think the changes happened very slowly, or maybe we just didn’t pay enough importance to them. After Daddy retired, Mummy was still a very socially active person, meeting relatives, attending functions, arranging neighborhood bhajans, and so on. My brothers had moved out for their studies and jobs.

I think I first noticed Mummy’s forgetfulness around the time my marriage was fixed. We had recently moved to an apartment my parents had just bought, and Mummy would often keep things at strange places and the kitchen arrangement was all mixed up, not the way an enthusiastic cook would handle it. I told myself it was just because it was a new apartment, but it still felt a bit odd.

She seemed very disinterested in all the hustle and bustle of purchases for the wedding. She would tag along for the shopping as if not really interested, and even when we traveled to our home town to place the order for the jewelry, she did not seem excited at this holiday and meeting our relatives in our home town.

In the six months between my engagement and marriage, I saw Mummy behave in many strange ways. She seemed very disinterested in all the hustle and bustle of purchases for the wedding. She would tag along for the shopping as if not really interested, and even when we traveled to our home town to place the order for the jewelry, she did not seem excited at this holiday and meeting our relatives in our home town. She had been so social earlier that this detachment felt odd. My Mausi also commented on this indifference, but we all felt that Mummy may be feeling sad because the only child left at home (my brothers had already moved out) would also be leaving home soon. I thought it was some sort of “empty nest” syndrome. I had to keep coaxing Mummy to buy a new saree for herself so that she looked pretty during the wedding festivities.

During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange.

During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange. It was like she was just doing things in a disoriented way, not happy about it.

I was especially surprised because Mummy had been so happy and active for my brother’s marriage, and even for a cousin’s marriage a few years ago, but I assumed that she was just very sad and would get over it, and besides, I was excited at entering a new phase of my own new life.

After my marriage, when I would visit my parents, I saw that Mummy had lost all interest in cooking. She had stopped cooking special dishes. Relatives told me she was quiet and inattentive. I would visit as often as I could, but I was also busy with my new life and my in-laws and career and all that. I didn’t think anything was seriously wrong with her, just that she was taking a long time adjusting to the home being empty.

It became obvious then that Mummy had really changed. For one, she seemed very scared of holding the child, and would just not pick him up. She only helped me by continuing to do the cooking, but she kept making mistakes even in that.

I began registering that something was wrong around the time I went to my parents’ home for the delivery of my first child. It became obvious then that Mummy had really changed. For one, she seemed very scared of holding the child, and would just not pick him up. She only helped me by continuing to do the cooking, but she kept making mistakes even in that. Rice would not be soaked long enough and be served undercooked; daal would be put on the table without the seasoning. If Daddy pointed out a mistake, she would calmly say she forgot and correct the problem, but she always looked preoccupied and distant. Daddy would sometimes get irritated, thinking she was being careless or doing things wrong on purpose.

I had never lived with any grandparents, and did not know whether this was the normal way that people aged, but I thought it might be.

I had no idea of what was happening. I had never lived with any grandparents, and did not know whether this was the normal way that people aged, but I thought it might be. As I was trying to handle my child, I would expect Mummy to help, for example, to set out the bath water and oil and soap. I would be surprised and irritated when she could not follow even simple instructions. Looking back, I can see that what I considered simple instructions were not actually all that simple. I would sometimes snap at her, but she would not get upset even if I scolded her.

Sometimes, as I found the child-rearing tiring, I would wonder how Mummy had managed bringing up three children, and would be awed at what mothers do for their children, and also feel very abashed about not having valued her when I was younger.

The way I saw it was, she was getting older, and ageing seemed to create more problems than what I had expected.

The next few years were very busy for me. I don’t remember too much of how she changed over those years. I would visit, of course, but I was engrossed with my family, and Mummy seemed silent. All Daddy ever said was that she was getting more and more forgetful, but otherwise things were okay.

It is obvious now that Daddy covered up for her mistakes far more than I realized in those days.

It is obvious now that Daddy covered up for her mistakes far more than I realized in those days. He was mobile and not dependent on her, and neither I nor my brothers realized that things were getting worse.

How did you realize that your mother had a problem that needed investigation?

It was actually by chance. I happened to attend a workshop on dementia as part of some work, and as the doctor conducting the workshop kept explaining each of the warning signs, I felt my heart sink as I found myself thinking: Mummy has that symptom. Sitting there, finding that Mummy was showing so many of the symptoms being described, I started suspecting that Mummy could be a dementia patient.

My emotional reaction was one of guilt for not having realized this earlier. Then, as the doctors explained about “reversible” dementia, I felt hope. Maybe Mummy’s problems were a reversible form, and could be solved.

The challenge was how to convince Daddy and my brothers about the need for consulting doctors. You see, none of us had seen her problems as a “mental problem”, just as growing forgetfulness. Her behavior did not have that agitation or rage that we associate with “mental problems.” And the idea of consulting a psychiatrist was very alien to us all. Words like “psychological problems”, “counseling”, “mental issues”, were all frightening.

I sat down with Daddy and my brothers to discuss more on what Mummy’s symptoms were. As we talked, I heard of more incidents that convinced me that Mummy may be having dementia, though I continued to hope that it would be the reversible type.

Daddy told me how Mummy, on some days, said she had no children, and on some days, claimed she had only one child, while sometimes she would correctly state that she had three children.

For example, Daddy told me how Mummy, on some days, said she had no children, and on some days, claimed she had only one child, while sometimes she would correctly state that she had three children. And my sister-in-law described numerous occasions when Mummy had seemed very disoriented, wandering about the two apartments (my parents’ apartment and my brother’s apartment), not at all sure what she was doing or where she was.

We all finally decided to consult a doctor.

Please describe how you got a diagnosis and started treatment.

Even after we decided to consult a doctor, we had no idea where we should go. We finally opted for a well-known nursing home in our locality, visiting as normal out-patients, and were directed to a junior doctor. We had no idea what to expect.

Mummy was quite bewildered about why we were visiting a doctor. I remember her asking me, “Why have you brought me here?” and when I said it was because there may be some medicine for her forgetfulness, she smiled and said there was nothing wrong with her. All through the visit, as the doctor talked to her, she was over-cheerful.

The doctor did not order any blood tests or scan, and directly put her on some medications that I now recognize as medications used in Alzheimer’s Disease. He gave us no explanation, and spent no time explaining the side-effects or anything else about the medication.

I feel very let down when I think of how the doctor dealt with us. He behaved as if we were the sort of people who will not be satisfied unless given a medicine, and as if we could not understand anything. He did not even try to explain or investigate more.

How did your mother respond to the medicines?

Mummy’s state deteriorated after the medicines were started.

Earlier, Mummy was forgetful and disoriented and uninterested. But after starting the medicines, She became even more forgetful. Her ability to recognize people went down, too, and she started calling my father “old man” and refused to share her bedroom with him.

The worst part was that her nature changed. She became irritable and agitated. Though not outright violent, she was clearly feeling very different. She often behaved like a college girl, and would be very distressed when she saw her gray hair, which she thought was really premature graying.

When we reported the problem to the doctor, he reduced the dose. After a while, on our insistence, he agreed to do more investigation. That was when they did various tests, including an MRI which, they claimed, confirmed the diagnosis of Alzheimer’s. I had been hoping even at that point that Mummy’s condition would be a reversible one.

The investigation done at this time included a neuro-assessment, and I was present for it.

When the doctor asked Mummy if she knew who I was, she said, “Of course. She is my sister.” I was shaken up. Mummy knew my name; I had no suspicion that she thought I was her sister and not daughter. I had not thought of testing her and asking her who she thought I was. Later, my brother told me that Mummy often did not know who was who, and called most people by the name of my sister-in-law.

How did your mother’s condition change with the treatment? How was care given?

The doctors told us that medication helps and should not be discontinued, though they adjusted the dose. Mummy’s hallucinations continued. She would seem to see things that weren’t there. Her behavior was increasingly strange. She would talk to herself in the mirror, and also try to walk out of the apartment, insisting she wanted to return to her father’s place. All this was even more problematic to deal with, especially because Daddy was having health problems of his own by now, and he was less mobile.

…and he (Daddy) would think she was troubling him deliberately. Though I had talked extensively about dementia to him, he was unable to accept that her strange behavior was because of that.

Daddy became upset and irritated more often then. As he had problems walking, he would ask Mummy to fetch a plate and she would fetch something totally different, and he would think she was troubling him deliberately. Though I had talked extensively about dementia to him, he was unable to accept that her strange behavior was because of that.

We tried to get a full-time maid for Mummy, but Daddy refused. He did not want someone hanging around the apartment all day. He did agree to employ someone for the cooking, and so the maid who was employed for cleaning the vessels was upgraded to “cook” status, and he trained her to his satisfaction. Food at home was, by now, very simple fare.

Mummy’s altered personality was very stressful for Daddy. I remember he got agitated a few times and said that we should stop the medication, or place her in an old age home and that he could not handle her any more.

It was a difficult time for all of us. My eldest brother, who lived at some distance, was supporting my parents financially. My second brother, my parents’ next door neighbor, was always available for emergencies. I was unable to help, as I had also got my own duties to my in-laws and a young child, but I tried to be there emotionally for “quality input”. My father, although tired and frustrated, still refused to take help. There were many episodes that were very challenging and worrying for us all.

Please give some examples of problems you faced.

Once, Mummy wandered off in the morning. We just could not find her. We alerted the police and then started looking. We were very tense, but we tried to think clearly. Mummy was fond of visiting the temple, and too scared to cross the main road. We therefore started searching in the various small side-roads. After several hours, we finally found her sitting in a park, watching children play.

When Mummy saw me, she smiled. “Oh, you have come, let us go home,” she said, as if this was all very normal.

After that day, Daddy was very careful to keep the apartment locked from inside so that she did not wander.

There were lots of small problems, mainly things we did not realize were happening.

It was only by chance that I realized one day that she no longer combed her hair, and it was all very horribly tangled.

For example, my mother used to tie her hair in a bun. To all appearances, she looked neat. It was only by chance that I realized one day that she no longer combed her hair, and it was all very horribly tangled. I took her to a beauty parlor to get her hair cut short, as I knew this problem would continue. Mummy was very upset about that. By chance, a close relative was visiting those days, and Mummy assumed that this person had come home just to cut her hair, and ranted at that person for a long time, accusing her of chopping off the hair.

You had mentioned that your father was not well…

Yes, Daddy was having severe health problems that affected his mobility. He had been refusing surgical intervention for years, but he finally realized that he could not look after Mummy if he was unwell himself. He then agreed to the surgery.

Once Daddy’s problems were solved, he became mobile and also less irritable, and was determined to manage Mummy’s care himself. He still does most of the work for her, and refuses to either employ a full-time help or let us (his children) help.

Does your mother continue to get very agitated? What is her current state?

At Daddy’s insistence, we stopped Mummy’s medication. The difference was visible in just a few days. Mummy’s hallucinations stopped. When on medication, she used to have a hawk-eyed look most of the time; that changed. She was no longer disturbed. She was still very forgetful, but the agitation type of behavior stopped.

I feel very bad that she suffered so much (and so did Daddy) because the medications did not suit her.

Sometimes I want to kick myself for not finding out more about the side effects of medication, and sometimes I feel upset that the doctors did not warn us about them. Even when we told them of the hallucinations, they did not suggest we try stopping the medications.

I know that some patients benefit from medications; I have heard from friends whose parents seemed much better with medication. But if there are some patients who suffer side-effects, shouldn’t the doctors tell us about that? I had assumed that Mummy’s deterioration was because of her Alzheimer’s…

Daddy is taking care of Mummy more cheerfully now. He cajoles her, he jokes with her. He has adjusted to her dementia and accepts that deterioration will happen.

Mummy continues to be very forgetful. Her other problems are also increasing, for example, she is sometimes incontinent (especially in the morning), and sometimes she forgets where the bathroom her, but she no longer gets agitated. She does not even try to walk out of the apartment any more, just paces in the apartment, though Daddy keeps the apartment door locked, just in case. Mummy is usually silent, though she sometimes talks to her pillow or mirror.

Some months ago, Mummy fell off a chair once and injured her arm that needed some stitches and also suffered from some hairline fractures. She kept trying to pluck off the bandage, and we had to be very alert for some days. My brother took leave to support Daddy for the operation and the subsequent care.

She also has some sleeplessness, and is responding well to a mild medication for that.

How does your father handle his own needs and life along with all the care he needs to give for your mother?

Daddy was never a very social person and is used to a sedentary life. He uses a dementia day care for some fixed days a week, and on these days, as Mummy is at the day care, he gets some hours of respite and also fits in any socializing or bank work or other work he wants to do. He is not willing to put Mummy in day care for all days, because he says he gets bored alone.

Daddy seems to have found his rhythm in looking after Mummy, who is more peaceful now. He says he will handle Mummy’s care as long as he can, and will ask us for help when he needs.

Daddy seems to have found his rhythm in looking after Mummy, who is more peaceful now. He says he will handle Mummy’s care as long as he can, and will ask us for help when he needs. He tells us he is confident we will help him, but he does not want this to affect our lives too much before need be. He keeps pointing out that we have our own families and careers and other responsibilities, too.

What about your relatives? Have they accepted your mother’s dementia?

I know of cases where families face problems because relatives do not believe the patient has dementia, and in that respect we have been very lucky.

Yes. We explained it to them, and they have accepted. I know of cases where families face problems because relatives do not believe the patient has dementia, and in that respect we have been very lucky. When close relatives visit, Mummy is very happy. She answers all questions by talking constantly and incoherently, and seems to enjoy herself. Her answers may make no sense, but no one comments on that. They keep a friendly eye on her, and are affectionate.

…when we explain her dementia to relatives, they often start telling us old incidents, some almost ten years old, where Mummy behaved in strange ways, like repeatedly getting lost inside their house when visiting

The funny part is, when we explain her dementia to relatives, they often start telling us old incidents, some almost ten years old, where Mummy behaved in strange ways, like repeatedly getting lost inside their house when visiting. These relatives had also noticed her extreme forgetfulness, but had assumed it was absentmindedness, even though the incidents seemed rather odd. It is only now, when we all sit together and compare notes and get the whole picture that we realize for how long Mummy has been facing problems.

Your mother was very fond of socializing. Is that possible now, or has it stopped completely?

Close relatives do visit, and Mummy enjoys their visits. Neighbors do not visit, as they know she is suffering from some problem, and do not want to disturb.

…a casual visitor cannot always know that she has dementia. When people are around her, she sits up straight, looks very dignified and gentle, and nods and smiles as if she is understanding everything …

Sometimes, we manage to take Mummy out for functions. We are hesitant because she is mildly incontinent and refuses to wear diapers, but short trips are still possible.

Actually, even now, a casual visitor cannot always know that she has dementia. When people are around her, she sits up straight, looks very dignified and gentle, and nods and smiles as if she is understanding everything, and in a short visit, her problem is not obvious to people who do not know her.

How well does she connect with her grandchildren? Are they able to accept her dementia and connect with her?

Mummy was very fond of her grandchildren. When they were young, say, less than six years old, they, too were very fond of her. Then they started sensing something was wrong with her, and would sometimes get irritated with her because of her forgetfulness. We explained dementia to them, and they became more patient. However, the bonding is not so good now, and Mummy does not seem interested in them. They do not interact much now.

As a family, how are you planning to cope with her further deterioration?

So far, we have been managing to share the work and everything is going on smoothly. All of us are concerned and participate in different ways. My eldest brother provides the financial support; my middle brother is always available for emergencies, and sometimes has to take so much leave I think it must be impacting his professional growth and career prospects. I try to stay emotionally connected and also keep reading up on dementia and making suggestions and so on. My father, of course, bears the brunt of it.

We give suggestions to Daddy, like once I tried to fix an ayah for taking care of Mummy and after great reluctance Daddy agreed. But unfortunately the ayah did not turn up the next day and daddy got a chance to say “I told you so!!” He then said that we have given it a try and now I would like to have things the way I want it. Beyond a point he is right and we have to respect his wishes.

Another thing: Daddy is very independent in his ways. He has not taken any of us in confidence about how he has arranged his finances.

When it became clear that Mummy can no longer sign, I suggested that he relooks at his investments so that her inability to sign does not become a problem, and I know that after that he changed some of his investments to manage them more easily, but he did not tell any of us the details. I do not want to be misunderstood, and am very indirect in the way I bring up sensitive topics like finances.

Another example is, Daddy does not believe in making a will. I tried to bring the topic up in a roundabout way, quoting some newspaper articles on problems elders face, but that is all I could do. I do not want any confusion after his death, but in our family, such topics are just not talked about.

I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future.

I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future. There is an assumption that we will all manage to do what is needed, but also that negative topics should not be brought up.

This wish I hope to fulfill when the time comes by donating her eyes for giving sight to a blind person and by donating her brain to a brain bank for the cause of finding a cure for Alzheimer’s. Who knows, someday this may help researchers to find a cure for Alzheimer’s and I may be one of the recipients!!

But one thing I felt strongly about was donating Mummy’s brain upon her death for furthering research on Alzheimer’s. What gave me the confidence to convince my father and brothers was the fact that Mummy has often spoken about eye donation and had explicitly wished that after her death if any of the body parts are useful to anyone, it should be donated. This wish I hope to fulfill when the time comes by donating her eyes for giving sight to a blind person and by donating her brain to a brain bank for the cause of finding a cure for Alzheimer’s. Who knows, someday this may help researchers to find a cure for Alzheimer’s and I may be one of the recipients!!

We do not talk about how we will handle the next stage of Mummy’s dementia. Sometimes I wonder, if something happens to Daddy, all this will collapse. There is nothing in writing, no will, no other instructions. I guess we will manage, though; we have done okay so far. The motto of my brother, for example, is “if I have to do it, I will do it.” We do not get emotional about these things.

Do you have any overall comments?

I feel very confused and guilty at times.

On one hand, when I put together all those early warning signs that were there, I feel we should have known about Mummy’s dementia much earlier, and got it investigated.

On the other hand, given the way she reacted to the medication, I am very doubtful about the advantage of early interventions that people keep talking about. In our case, medicines did not help at all; they made things worse, and we did not get proper advice from doctors. I have heard some specialists say that medicines should be the last resort for geriatrics, and that also makes me wonder, because other specialists are quick to prescribe medicines.

I feel angry at times that we did not receive good guidance from the doctors whom we first approached and sometimes I redirect the anger at myself for not doing enough of reading up when so much of information is available on the Internet. If an educated person like me didn’t do the right thing at the right time, how helpless will be those who are uneducated, completely ignorant of all aspects of the disease! How many elders may be getting accused for “deliberately trying to act difficult” when actually they may be in the initial stages of dementia!

I know that each dementia patient is different, but how is one to know what is best for our patient, our family?

Whatever you do, you are groping in the dark. You cannot know while acting if you are right, which step may help, and which may not. This makes me feel very uncertain about things, but I also feel guilty at times for having missed out what seems obvious in hindsight.

There used to be ups and downs, good days and bad. On the days she was better, I would be convinced that her problem was minor, was reversible. There was hope, or maybe that was inability to accept. Is hope wrong? Did it delay our doing what was needed? Or accepting?

I think I spent a lot of time truly accepting Mummy’s dementia. There used to be ups and downs, good days and bad. On the days she was better, I would be convinced that her problem was minor, was reversible. There was hope, or maybe that was inability to accept. Is hope wrong? Did it delay our doing what was needed? Or accepting? For Daddy, his inability to accept continued even longer, and he was not able to connect her strange behavior to her medical problem and would get irritated or dejected. He was bearing the brunt of her behavior, anyway.

One more observation is that Daddy’s ability to accept her condition and to change his way of caring improved a lot after his health problem was solved. Maybe if he had not been suffering himself, he would have reconciled to her problem and coped with it without suffering as much as he did.

Daddy, who is close to 80 years old, does all the work and refuses to take help. I feel guilty and helpless and frustrated. But I cannot intrude; one has to accept the boundaries he has set.

Right now, though I am trying my best to support my parents, I am not able to do much for them. Daddy, who is close to 80 years old, does all the work and refuses to take help. I feel guilty and helpless and frustrated. But I cannot intrude; one has to accept the boundaries he has set. He keeps saying, “She is my wife, and I am the one who will look after her as long as I can,-if I was in her place she may have done much more for me” -and we have no choice but to respect his choice and decision and support from the sidelines as best as we can.

Thank you, Mala!

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My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

admin — Fri, 14 Oct 2011 14:22:10 +0000

Nadira (name changed) is a highly-reputed consultant who has executed sensitive and critical assignments with several well-known multi-national companies. She is now taking a break from professional work and residing in India, caring for her 80+ mother who suffers from Alzheimer’s. In the interview below, Nadira shares how the progression of her mother’s illness reflected in behaviour changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behaviour displayed by her mother, and how she has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother.[note]

Please share some background information related to your family and situation.

I was the first person in my extended family to leave home at 17 years of age – to study abroad and shape my future. I am the youngest of three children; my sister and brother are much older than me. It always seemed to me like there was a whole generation missing between my parents and I. Because of this, my relationship with them was always fraught with confrontations and rows, especially in my late teens and early twenties.

The relationship with my mother in particular was pretty fractious, probably because we both have very similar personalities; we are both headstrong individuals with quick tempers. Our blow-ups were frequent, harsh and at times even violent, because she seemed to be possessive and always wanted to have her own way.

After I left home for studies, contact with my parents was restricted to short annual visits. My contact with my siblings who were married and lived different parts of the world, was even less.

Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister.

My parents lived in India by themselves because my siblings and I were settled abroad. Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister. Sadly, my father passed away barely 15 months after the move. It was after my father’s passing that my mother’s condition was diagnosed. My sister handled my mother’s care for seven straight years after this diagnosis, and then I took a sabbatical and moved to India with my mother to take care of her so that my sister could get a well-deserved break.

Please describe the initial symptoms that your mother showed.

…the early symptoms…

Frequent episodes of forgetting things, like leaving milk on the stove till it burnt, or repeatedly opening the same container to check what was in it;
Lost interest in cooking;
Lost interest in dressing smartly (she was always immaculately dressed);
…

My mother began to act strangely around the mid-1990s, and this became more pronounced over the years. Some examples of such behaviour:

Frequent episodes of forgetting things, like leaving milk on the stove till it burnt, or repeatedly opening the same container to check what was in it;
Lost interest in cooking;
Lost interest in dressing smartly (she was always immaculately dressed);
Repeatedly asking the same question in quick succession;
Very suspicious of my father’s motives and behaviour;
Frequent outbursts of anger to the point of nastiness.

How did the family respond to such behaviour?

As my siblings and I had all settled abroad, my father was our mother’s the primary caregiver. Our visits to India were infrequent, and during our phone conversations he rarely shared his difficulties with us. It was only on our short visits that we experienced his situation first hand.

I think my father sensed that something was not quite right with my mother, although he never regarded it as a medical problem. He was extraordinarily patient with her, particularly in the later years, and was very concerned about who would care for her after his death.

… my mother became increasingly dependent on my father and would do nothing without him, and he, in turn, was tender and compassionate in his care of her.

In the earlier years, he would sometimes tell me, “She is very difficult now” or “Please find me somewhere else to live; I want to live separately”. I didn’t realise that this may have been said out of a feeling of exhaustion or frustration in taking care of her. Instead I wondered if it was a sign of the marriage breaking up. In hindsight, however, I know that the marriage became stronger and they needed and loved each other more in their twilight years. In fact, my mother became increasingly dependent on my father and would do nothing without him, and he, in turn, was tender and compassionate in his care of her.

Our rows were very nasty and often ended up with a bitter, hurtful exchange of words and sometimes even physical violence. …She (my mother) would then…apologize saying “Please forgive me, I know I was not nice to you, but I can’t remember what happened; please come back home.”

In those years, my visits home would start off well for a couple of days before the terrible rows started. My mother would be very possessive and hated my going out to visit other family and friends. I had no understanding of her situation and became extremely frustrated with her behaviour. Our rows were very nasty and often ended up with a bitter, hurtful exchange of words and sometimes even physical violence. Often I would pack up my bags and leave to stay someplace else. She would then soon seek me out to where I was staying and apologize saying “Please forgive me, I know I was not nice to you, but I can’t remember what happened; please come back home.” I went back sometimes, but often didn’t because I assumed her behaviour was just her usual ‘nonsense’.

My sister related similar hurtful experiences on her vacations in India, with fights that made her pack up and leave the house, taking her young children along, to stay elsewhere instead.

Throughout this period my sister and I saw our mother’s behaviour as gradual worsening of the sort of person she’d always been. It never occurred to us that something may be medically wrong with her.

What happened when your father’s health starting failing?

We felt terribly hurt by her words and accusations.

Only when he turned 90 did my father allow himself to admit that he was unable to handle my mother’s care alone. He agreed to move out of India to live with my sister. My sister became their sole caregiver from then onwards. Just over a year after the move, he suffered a massive stroke that left him completely incapacitated and bedridden. As he grew frailer by the day, my sister and I were concerned that, perhaps worry about our mother’s care after he was gone may be ‘holding him back’. One morning when nursing my father, my sister assured him that he need not worry about mother and that we would take good care of her and that he could ‘move on’ if that concern was holding him back. Our mother overheard this, and interpreted it to mean that we didn’t want him to live and in effect were “murdering” him, and she became uncommonly agitated and accusing. We felt terribly hurt by her words and accusations.

Your sister was the primary caregiver for seven years. Could you share data from this period of your mother’s care?

After my father’s death, my mother insisted on coming back to India and it was then that we first had her examined by specialists. She was diagnosed with ‘senile dementia’ and I recall the doctor telling us then that it was not reversible and that we should make arrangements for proper round-the-clock care for her. At this stage my mother was adamant about living in India, even if it meant living on her own. As a family we thought it would be therapeutic for her to be in familiar surroundings in the aftermath of my father’s death, so we went along with it for a few weeks.

Being in familiar surrounding didn’t seem to help. She (my mother) got increasingly agitated by the day. Everything seemed different from what she remembered it to be or wanted it to be.

My sister and I took turns in caring for our mother for a few weeks at a time. This was one of the toughest periods in caring for her. Being in familiar surrounding didn’t seem to help. She got increasingly agitated by the day. Everything seemed different from what she remembered it to be or wanted it to be. She would get very angry and even throw me out of the house. I would often sit on the pavement, late at night waiting for her to calm down and let me in again. We were all grieving for our father in different ways, but I could not empathize with her behaviour, and it literally drove me away. I was unable to take care of her even for a few weeks because of her ‘irrational’ behaviour. Thereafter the responsibility for my mother’s care reverted completely to my sister.

After a couple of days of living alone in our hometown in India (with hired help) my mother realised that she could not live on her own and was moved temporarily to a relative’s place until my sister could make the required visa and travel arrangements for her to move out of India and back to her home. The nature of my work at that time involved a lot of travel, often at short notice. I worked long hours, and lived in hotels and serviced apartments. There was no possibility of my taking my mother with me and giving her the care she needed, even if she agreed to let me care for her. I did, however, take on all the financial responsibility as my contribution towards her care.

My sister had a demanding job and her children were still in junior school when she took on the care of my mother. She juggled all of these, set aside her own differences and conflict with our mother, accepted my mother’s condition as a fact, and took care of her for seven years.

There were incidents when my mother wandered off because she wanted to “go back home.” She also became progressively incontinent but refused to admit it. She refused to bathe or clean herself, and threw tantrums to eat.

For the first couple of years after my father’s death, I avoided visiting my mother. This was because both my sister and I felt that my presence aggravated my mother’s symptoms, possibly due to our past strained and fractious relationship. My mother seemed to tense up just on seeing me. So for those first few years, my sister handled the actual care of my mother alone. These were also the most difficult years in terms of my mother’s strange behaviour. There were incidents when my mother wandered off because she wanted to “go back home.” She also became progressively incontinent but refused to admit it. She refused to bathe or clean herself, and threw tantrums to eat. It was exhausting for my sister and the home help to trail my mother and clean after her and keep the home from smelling unpleasant. My sister always had to be on the guard in case my mother wandered off.

After around three years of my father’s death, within a short period of three months, my mother suddenly deteriorated physically in a very visible manner. She lost weight, started having problems walking and developed a shuffling gait. My mother had been prescribed anti-psychotics but my sister gradually discontinued them as she felt that they were not helping.

I finally visited my sister around that time, and was shocked to see the state of my mother. She looked incredibly small and shrunken and was barely mobile. At this time the behavioural symptoms she displayed included:

Depression
Suspicion and delusions
Increased bouts of sleep, especially in the daytime
Poor appetite
Very poor short-term memory
Hallucinations, especially at night
No inclination to communicate
Unable to distinguish between reality and TV
Generally helpless

It became obvious to me then that caring for my mother was a very strenuous task. While I could not afford to stop working, I decided to commit to going over to my sister’s home at regular intervals and take over our mother’s care so that my sister could get a break. It was the first time in years, during this visit, that my mother and I did not have a row, and this helped me make the decision to take a more active role in my mother’s care. I also began to read up, research and understand the illness afflicting my mother.

I sat her down on the stairs and began cutting her nails, when she started crying and said “I can’t believe that I’ve reached this stage and that you have to do this for me. I used to do this for you not so long ago.” I found myself crying along with her and reassuring her that it was her time to be pampered.

Although my mother’s care was very challenging at times and she was becoming increasingly dependent on hands-on care, she also exhibited spells of lucidity and tender moments. I remember once, I noticed that her toenails needed trimming. I sat her down on the stairs and began cutting her nails, when she started crying and said “I can’t believe that I’ve reached this stage and that you have to do this for me. I used to do this for you not so long ago.” I found myself crying along with her and reassuring her that it was her time to be pampered.

Can you describe the next phase of caregiving?

After seven years of continuous caregiving, my sister finally said she needed a longer break. As it happened, I had just completed some very intense and stressful assignments and was planning to do something different for a while, and so I agreed to look after our mother in India for a few weeks to give my sister vacation time.

Those few weeks in India were an eye-opener for me. My mother seemed to be so much happier. Friends and family were dropping in to see her after many years; she struggled with remembering names but she knew most faces. She revelled in her new surroundings, loved the attention she got, and the fuss I made 24/7! The thought of making her go back to live with my sister, in a country and environment where her life was very different, seemed unfair at this stage of her life.

So my siblings and I discussed other possible care giving options. We decided to keep our mother static in our home town in India, and agreed that we would take turns to come down here to care for her. I thus set up a home that would be comfortable for caregiving, and large enough for all of us to have our own space. We also agreed that the bulk of the caregiving would be taken up by my brother as he had now retired and had fewer responsibilities. I redesigned my professional commitments so that I could get enough breaks to come to India and take over care whenever my brother needed to get back to his home country for a few weeks to manage his affairs.

This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

Unfortunately, after a few months my brother found he could not cope with the changes that this arrangement entailed. He changed his mind about his commitment. This meant I had to turn down a new assignment and return to India to again take charge of my mother’s care. My siblings suggested that we place my mother in an institution, but this was not an option for me. This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

I have educated myself further on dementia and caregiving. I have benefited from caregiver Support Group Meetings and have had the time to think of ways in which I can be more productive in the area of caregiving.

In the last year, since I took charge of my mother’s care, I have educated myself further on dementia and caregiving. I have benefited from caregiver Support Group Meetings and have had the time to think of ways in which I can be more productive in the area of caregiving.

Please share how you got your mother diagnosed and how the family responded to it

In the early years my father knew that something was amiss ‘mentally’ with my mother but did not consider getting medical help as he assumed it was related to aging. However, he was quick in getting medical attention if it had something to do with her physical well-being.

Although we had our mother examined just after my father’s death, and we were told that there were ‘multi infarct lesions on the right side of her brain’, and that she had dementia, neither my sister nor I took the trouble of finding out more about this illness at that time. We just accepted it as a fact and cared for her to the best of our abilities. Seeking specialised medical attention or research on what could be done for her, did not occur to us for reasons I still don’t understand.

It was only when I took charge of my mother’s care again, seven years after the initial tests, that I took her for a proper check-up and diagnosis. We didn’t even have the original MRI and other medical records from previous tests to compare the changes that had taken place in the intervening years.

I often wonder why it took us so long to realize the consequences of her medical condition and why we did not research to see how best to provide effective care. We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness.

Were we so caught up in our own lives that we neglected the fact that she suffered an illness and was not ‘just getting old’? All three of us lead very busy lives of our own in different parts of the world. Speaking for myself, it is possible that I did not want to face the fact that there was a problem that needed to be dealt with, thinking it would interfere in my life and add to the stress of my own high-profile career. And I have this ‘incredible’ ability to shut things out of my mind when I want to.

Or it may have been that the reason for our inability or unwillingness to see this as a medical condition was our impression that her behaviour was a continuation of old characteristics, which were getting worse with age. But could it possibly be that we were in denial and not wanting to face up to the consequences of her medical condition? After all, our aunt (our mother’s older sister) had died of dementia. She had even wandered off from home and remained missing for almost two weeks, a very traumatic time for all of us.

Whatever it was, although our mother was being cared for to the best of our abilities, we were slow off the mark in caring for her in an informed manner. That’s for sure.

Or perhaps was caused by a combination of all of the above factors.

Whatever it was, although our mother was being cared for to the best of our abilities, we were slow off the mark in caring for her in an informed manner. That’s for sure.

Please tell us about your family history of dementia

My aunt died of dementia well over a decade ago. I had seen her once in the early stages when she showed symptoms such as repeatedly asking the same question. Another instance comes to mind when she had come down to visit my mother and stay for a while. No sooner had her son left after dropping her off, she became insistent that she had to go back immediately although the plan was that she’d stay the week. The ruckus she caused did not leave my parents any option but to take her back immediately. The family would not talk of the problem except implying that “something was not right in her head”. Then, there was the incident of wandering I just mentioned earlier, when my aunt walked out of her home and was found in a pathetic state almost two weeks after she had gone missing. Even after this incident, no one talked about her medical condition. Next I remember being told that she was bed-ridden, and then that she’d passed away.

At a recent family gathering of my cousins when discussing my mother’s health, we realised there could have been other elders in the family who probably had dementia.

At a recent family gathering of my cousins when discussing my mother’s health, we realised there could have been other elders in the family who probably had dementia. We recalled family anecdotes narrated to us by our respective parents that indicated that our grandmother exhibited extreme forgetfulness (such as being unable to recognize even close relatives) and other typical dementia symptoms. However, no one had linked these stories together earlier on to realize that dementia could be running in the family.

Our recent awakening, though, has had some benefit. My uncle (my mother’s younger brother) who is around 80 years old and had been showing dementia symptoms for some years has been diagnosed recently, when he is still in a relatively early stage.

Given the family history, my sister and I are aware of the possibility of our developing dementia later in life. This is something we need to think about, and plan for, more seriously in the near future.

But even now, not all of us in the family understand dementia and how it affects behaviour. My brother, for example, still feels that my mother’s current behaviour is no different from what she showed fifty years ago

You have recently consulted doctors for your mother. What is her current state, and what do doctors advise?

My mother is currently wheelchair bound, and can only walk very short distances (like room to toilet) and only if supported. She is also incontinent. She is confused with languages, often speaking in one when she thinks she is speaking another. All her personal hygiene needs have to be taken care of by others.

On a good day we can play games, listen to music and sing along or read the newspapers (although she ends up reading the same line repeatedly!). She can still do some mental arithmetic and even tries to cheat when we play games .

However, she is still able to talk sensibly at times and has moments of lucidity, when she can recognize faces. On a good day we can play games, listen to music and sing along or read the newspapers (although she ends up reading the same line repeatedly!). She can still do some mental arithmetic and even tries to cheat when we play games . She eats well and loves her food.

My mother has always had mood swings. Every few weeks she has an episode of extreme agitation, often also showing delusions and hallucinations. Then, for some weeks, she is much calmer, even slipping into a depressive state where she cries and says despondent things like, “Why am I alive?”

We have seen this for years, but had never thought of investigating it or consulting doctors for it. After talking to doctors now, I realise that these mood-swings may not be because of dementia, but could be due to some form of clinical depression, and may be treatable. I am consulting doctors to see a way forward, because managing the mood swings would greatly improve my mother’s quality of life.

What is the current care arrangement for your mother?

Currently, I am the primary caregiver. I have a paid attendant who attends to my mother’s food and hygiene. My mother has grown very fond of this girl. We never leave my mother alone in the apartment; if I need to go out, I do so only when the attendant is at home to keep an eye on my mother.

My mother has her own room and bathroom. The bed she sleeps on is very low so that she does not hurt herself in case she falls. There is protection on the floor in case she does fall. The bathroom has side rails to help her sit up straight; the toilet seat is padded for her comfort. The tiles were replaced to make them anti-skid. I have a large mirror in her room – this helps her to reorient herself, especially when she wakes up in the morning, to who she is and how old she is. There are a few pictures of the family in the room. At times these pictures have a negative effect so they are placed in a way that she can’t see them all the time.

As my mother spends a large portion of the day in bed, I have had an air mattress installed to prevent bed sores. I also use incontinence under-pads on the bed at night to minimize soiling of sheets and mattresses. Also used are incontinence “pants” instead of diapers as these are easier to put on. Besides, because they are pull-ups my mother assumes they are normal knickers. I used to import both the under-pads and pull-ups from overseas, but have now managed to source these in India. I have a supplier who delivers my monthly supplies to my home.

The most time consuming part of my mother’s care is bathing and getting her cleaned up every day. On good days we might spend about ½ an hour. On difficult days this could stretch to an hour or more. But once she is up, my mother is not very difficult to handle. She has a healthy appetite and eats two meals a day. Most often she manages to feed herself. She is not dextrous enough to eat with a spoon, so often she uses her fingers, which means we have to pay particular attention to hygiene. Wearing diapers can make one’s skin itchy and she scratches herself at night. So we make sure we wash her hands thoroughly and always keep her nails short.

Her diet is managed carefully to ensure that she does not suffer from bowel problems – she is given at least two kinds of fruit every day. She loves chocolates but this is rationed and given to her after a meal and any time before 5.00 pm. If she eats any sweets, especially chocolates in the evenings, it tends to keep her awake at night, so I avoid this as much as I can. Sometimes when she does not feel like having a second meal, she is given a glass of Ensure as a meal replacement.

Music works like magic most times to keep her occupied, calm and/or to de-stress her. She often sings along if she recognizes the song.

Music works like magic most times to keep her occupied, calm and/or to de-stress her. She often sings along if she recognizes the song. When she occasionally asks after my siblings and she is in the right frame of mind we talk on Skype which she really enjoys. She thinks they are in the room with her! She can also occasionally converse on the telephone, but this is very rare. On a good day she enjoys having visitors and listening in to conversations even if she does not participate in them.

How has this past year of caregiving affected you?

It has changed me in more ways than I thought possible.

Caregiving has made me discover a huge fund of patience within myself that I never knew existed! I have found myself capable of far more love and empathy than I thought I had.

I was always a very driven person, impatient to get on with what needed to be done, and short-tempered with people – a very hard nut to crack. Caregiving has made me discover a huge fund of patience within myself that I never knew existed! I have found myself capable of far more love and empathy than I thought I had.

For almost a year now, I have spent the bulk of my time caring for my mother, with my professional life on standby. While I have a small social circle of old school friends and extended family, and I am regular at the gym, I am living a very different life from what I was used to. For someone who worked 16 hour days 6 days a week and was on call 24/7. I now have a lot more time for myself to pursue other interests. I used to spend a lot of time travelling earlier; now I am losing air miles for not using them before they expire! The phone is more or less silent and there are only a few emails that need my urgent attention.

Yet, I can categorically say that I would not have it any other way. I am happy with what I am doing, and find the time I spend with my mother enriching.

What are your plans for the future?

My current focus is on getting my mother as stable as possible, and using medical advice for components of her condition that are treatable. I have also set up a good, suitable environment of care.

My mother has a past history of “abandonment” and I would like her to always have a family member living with her.

My mother has a past history of “abandonment” and I would like her to always have a family member living with her. Hence, I am not considering placing her in a long-term stay facility as an option–I suspect placing her in such a facility would make her feel abandoned and therefore pull her down.

My mother is my top priority right now.

Once my mother is happier and better settled, I hope to work out an arrangement with my sister to take turns for care. I can then sign up for professional assignments for the months when my sister is handling care. The decision I take will be determined by my mother’s care situation, whether I do it myself or share it with my sister. My mother is my top priority right now.

Thank you for this detailed and frank interview, Nadira!

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Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

admin — Wed, 07 Sep 2011 11:10:59 +0000

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting. [note]

As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Can you describe a couple of such experiences and how you and your colleagues resolved them?

In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.

..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost

Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost.

In hospitals, patients often have to share a room with other patients, and they may not like the people they share the room with, or others may come and invade their space or touch their things etc. There are many challenges of managing patients with dementia in a group setting. There is a lot of activity because of people coming and going, and conversations happening around them, which their mind is trying to make sense of and often interweaving into their own thoughts. In “aged care facilities”, where we strive to create a home away from home, persons with dementia may share a room with one other person for company or have a room on their own, which is a lot nicer for the patient.

In both “aged care” facilities and hospitals, we try to keep the environment quieter and calmer to reduce episodes of agitation. We are better at creating a calm environment at “aged care” facilities, than we are in hospital where there is always a lot happening because the medical problems being treated require constant attention and action.

It really would be ideal to try and resolve health issues of patients in their own familiar surroundings with their own doctor who has a relationship with them. Home care, therefore, is preferable if the family can handle it. This is not always possible, and if patients do need admission to a hospital for some medical problem, then it is often best if the family members can spend a lot of time visiting, and during the visit, take their loved one away from the room to a quieter area for a spell.

When a patient gets agitated, the nurses try to assess the cause of the agitation. Do the patients need to go to the toilet? Do they need to have a drink or a snack? Has someone annoyed them? Is there too much activity or noise that is causing it the patient’s agitation? Is it related to memories, for example, they feel they have to get to work, or go do the shopping, or go home? Are they in pain– a simple headache may lead to agitated behavior.

Once the cause is established and the patient’s basic comfort needs have been met, then if the agitation persists, we try to use distraction techniques.

We may ask simple questions requiring simple answers like ‘yes’ or ‘no’. We can elaborate and suggest a response, just to keep the conversation going, and we also take the stress out of them struggling to find an appropriate answer.

We try general soothing conversation using a calm tone, low pitch and slower pace. We point out pictures in a mag or in photo albums and elicit conversation. We may ask simple questions requiring simple answers like ‘yes’ or ‘no’. We can elaborate and suggest a response, just to keep the conversation going, and we also take the stress out of them struggling to find an appropriate answer. We might make them a cup of tea and sit with them for a chat. We might get them singing or play some olden-days cheerful but gentle songs. We play simple children’s games with them, give them something to cuddle or just hold their hand stroking it gently. We might get their loved ones on the telephone to speak with them — this often helps to calm them down– the promise of a visit ‘later’. We might take them for a gentle slow paced walk away from their area.

If simple measures don’t work, we may use medication.

If patients are aggressive, we might just leave them alone in a safe environment and observe them from a distance. With time sometimes, the aggression may resolve. We may get another staff member to approach them, as sometimes for a while you become the ‘bad guy’ or the cause of their frustration.

Note that, to be effective while helping a patient, we need to know enough about them. Persons with dementia might not be able to tell us what their age is or what their profession used to be, or what their family members’ names are. To be able to care for them in an “aged care” or hospital setting, it helps enormously to have some background information when interacting with patients with dementia. This helps us manage their agitation better. Fortunately for home caregivers, they typically know enough about the patient.

Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

One important thing I’d like to emphasize is that we have to separate the person from the disease, so that we don’t lose sight of them as individuals. Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

Can you share some tips about possible triggers?

Some triggers for agitation may be needing to go to the toilet, can’t find the toilet, needing a drink or food, too much noise, pain/headache, something on T.V. if that is playing in the background, the tone of our voice, reacting to our impatience, feeling cold/or hot,.

The time of the day can be a trigger, often at sunset (this is called ‘sundowners syndrome’) probably because in the past they had to get things ready for the family coming home, or had to get home by a certain time. Sundowning is managed best by medication, as they remain agitated till it gets dark.

Sometimes agitation is just related to memories that come up– ‘got to go to the bank’, ‘got to go to the shops’, ‘got to get the car fixed’, ‘got to get the crop harvested’ etc.

Another trigger may be related to pain, or being constipated, or if the symptoms have worsened over a few days it may be related to a urine infection or other health problems.

Sometimes, patients get into a sort of “loop” where they keep repeating a demand or remain stuck into an emotional pattern even when the “trigger” is resolved. What do you suggest?

If the behavior is repetitive questions, first establish that they don’t need to go out to the toilet or need a drink or are free from pain. If it still persists, then you don’t have to become frustrated by feeling that you have to answer every time; it is just a behavior, develop a bit of a deaf ear. Involve them in some meaningful activity.

They may be acting repetitive because they are bored.

They may be acting repetitive because they are bored. If you are getting a meal ready, then give them a simple chore like peeling vegetables or shelling peas or setting the table(unbreakable dishes are a good idea, like thalis).

As a last resort, medication might be an option.

Can you give some examples of changes we can make in our homes to reduce the chances of patients getting agitated, or wandering out, or harming themselves?

Keep the temperature comfortable.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

Reduce the auditory and sensory stimulation. For example, don’t have the T.V. blaring loudly in the background, or have them in a room where children are running around fighting or playing noisily. Keep the environment calm, with adequate but not glaring lighting. The T.V. news is often distressing as it usually contains unpleasant, anxiety-producing negative content about wars or thieves etc. Nature shows or travel documentaries or children’s shows are often good distraction for a short while.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

A simple picture of a male/female and a toilet on the door of the toilet helps them locate the toilet if that is a problem.

You can also make some changes in the home to make it an uncluttered, safe environment, such as remove loose rugs/mats that they might trip or slip on.

Can you suggest ways to keep patients engaged and active when we are busy with household chores and not able to sit down with patients for games or other activities? Are there any activities that do not require continuous supervision, and would not frustrate them if they are alone?

You generally can’t leave them alone for long unless they were accustomed to spending large amounts of time on their own listening to music or reading.

One good and simple idea is to have a rummage box, a bit like your grandmother’s sewing box, full of interesting bits of fabric, spools of thread, buttons, lace, and add other interesting things like colorful balls, small bells, costume jewellery etc. For men, you can have a box of nuts and bolts, small spanners, bits of wood, scraps of fabric etc.

Start them off picking up items and putting them on a table in front of them. Suggest they sort out the box or tidy up. Once they empty it out, they will often pack it up again— a few minutes of time is bought.

Instead of using a rummage box, we sometimes make a ‘fiddle mat’, which is easier to handle, and takes less space to play with. A fiddle mat is a small fabric place-mat to which we attach objects of the sort we may have kept in a rummage box. For example, we stitch on things like zippers, ribbon tied in a bow (which they can undo and fiddle with), colorful buttons, bells, pieces of fabric, things from their past that hold memories like bobbins( thread reels), bits of knitting or crochet etc. Patients often spend hours trying to get the objects off the mat or trying to ‘fix’ it. Such a mat would be simple to make at home, too.

Photograph of some fiddle mats. Courtesy: Sheila

Some people with dementia often rummage through drawers. They will pull out all their clothes and pack them away in bags as if getting ready to leave. You can have drawers they can rummage through without upsetting you, and just put everything back when they’ve lost interest later. Try not to scold them, or it will backfire on you and just make them agitated. I’d suggest you keep their everyday clothes in another area, and just let them have items in their drawers that won’t upset you if they mess it all up.

I’d suggest you keep their everyday clothes in another area, and just let them have items in their drawers that won’t upset you if they mess it all up

In the “aged care” or hospital setting, nurses will often take the patients with them when they are doing routine tasks like restocking cupboards etc. While the nurses are tackling the tasks, they give the patients something simple to hold or ask them for help with tasks like folding cloths.

You can do things like that at home, too. If you are doing laundry, have them sitting nearby (like you would have done with your kids or grandkids) and give them pegs to fiddle with or some folding of simple items. Again, don’t expect a task to be completed as they often lose their train of thought and can’t concentrate for long periods. Remember that you are giving them something to do to keep them occupied and happy while you are doing your own work; you are not giving them the task in order to get it completed perfectly.

If they are strong on their feet they can help you carry items and walk along with you.

Everyone wants to be useful. It would be pretty scary especially in the early stages of dementia to be aware that you were losing your mind and not being able to recognize everyday items and people.

Caregivers would love to spend quality time with the patients, but don’t always know how to. What sort of joint games/ activities have you found patients enjoying with their caregivers?

Some activities you could try:

Armchair exercises: Stand/sit in front of your loved one and ask them to mimic your exercises. Raise your arms over your head, then lower them out to the side. Raise your arms above your head, then touch your shoulders with your fingertips. Bend your head from one side to the other, up and down, side to side etc. raise your legs out in front, then back down. Rotate your ankles, and so on– you get the picture. Make up your own routine and keep it simple.

If they liked to paint when they were young, get some poster paints/crayons or colored pencils and a scrap book or children’s’ coloring in books. Even if they were never too interested in painting, they will often participate and produce meaningful pictures.

Look through photo albums, talking about the people and places.

Make scrapbooks of comforting pictures. Patients can help cut out pictures and glue them down. When made up, these scrapbooks are good to look at and chat about. Fill the scrapbooks with large pictures of flowers, or scenery or animals and birds, or even household items or festivals. You can glue pieces of fabric down– choose colorful patterns or fabrics with texture that they can touch and feel.

In our “aged care” setting and in hospitals, our patients often like walking around the corridors looking at the pictures on the walls, pictures of sceneries and birds, or framed embroidery or tapestry. We always stop and reflect on the picture and have a gentle conversation about it.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

Watching happy old movies may be okay. They might fall asleep during it or walk away. Just be guided by what mood they are in.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

A soft toy or baby doll might be of comfort, especially to the ladies.

Stroking pets (if they are fond of pets) is comforting. You can always get friends to bring a calm pet over.

Asking family or friends to telephone or visit one at a time, also breaks up the day.

How can we know which activity to try out, and when? How much activity is good, and when does it become over-stimulation?

Do activities when they are at their best/ most alert.

Think of how you would entertain a toddler at home. Similarly, the attention span of persons with dementia is limited and their ability is often limited, so keep games simple. Matching cards/pictures. playing snakes and ladders, try any children’s’ games and see what they are able to do. You will know they’ve had enough if they become restless or fall asleep.

Intersperse activities with walks. Walking in the garden is good. Point out flowers and trees on the way. Keep an easy social chitchat going even if they don’t reply. Ask simple questions on and off, and answer your own question if they’re having trouble answering.

It is better to have a daily routine. Get up around the same time, eat around the same time, and so on. Just swap the activities around every now and then.

Are there any other observations you would like to share?

I would suggest family carers try and get some time out for themselves every day just to go for a walk, or have coffee with a friend, or just do the shopping.

Friends are often willing to sit with your loved ones and read to them or talk with them, if they know what to do and what to say. If you are feeling stressed (just like you did when looking after your children when they were young), ask friends for help or time out. It is not dissimilar to minding a young child– just make sure they get to know your friend before you leave them alone with them.

It is not selfish to have time for yourself or admit you are feeling frustrated and stressed. You will feel a lot more loving if you can have some ‘me time’.

Your roles have swapped completely, and instead of having that parent you looked up to for advice, you now have a little child in an adult’s body. Some family members describe it as “living with a stranger”. If you are caring for your spouse, your husband or wife no longer recognizes you. It is recognized that carers go through a grieving process as the person they knew disappears for ever.

Go easy on yourselves. You are doing a wonderful service. Take time out so you can last the distance and feel good about yourself.

Thank you for this very informative set of tips, Sheila!

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This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

She would simply hold on to me for support: a husband cares for a wife with dementia

admin — Wed, 07 Sep 2011 11:08:52 +0000

Introduction: Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver. [note]

Could you describe the symptoms and state of your wife, which led you to give up your career?

(from left) Ramana’s father, Ramana’s wife, Ramana

My wife’s short term and long term memories were shot to pieces. Both would work some times, but most times, they would not. She could not recollect names, places or events and if some one explained, she would pretend to understand, but it was just that, a pretense. The only two people she recognized and was comfortable with were our son and me and here too, the past had no meaning or resonance for her. Simple things like taking medicines and prescribed food were a problem because she would not remember if she had taken or not. Anything or place out of the familiar would result in panic attacks for her and if either my son or I was not around, she would simply go into a shell and it would take hours to come out of that shell.

On a few occasions, she went out to walk on her own, when I was not around, and even within our own locality, she got lost. Luckily on all occasions, people who recognized her brought her safely home.

Although our house is in Pune, I was at that time pursuing my career in the South, while my son and daughter-in-law lived in Pune. My wife found living in the South with me difficult because she simply could not manage the language and did not like being alone at home when I used to work 10 to 12 hours a day. She had therefore returned to Pune to be in her own home and live with her son and daughter-in-law. I would come to Pune whenever I could, for weekends or holidays, or because of emergencies.

When, after my wife’s infarcts, it became clear that she needed more care, we tried using live-in paid help for her, but she rejected this caregiving alternative by simply withdrawing into her shell and I decided to wind up my bachelor set-up in the South and return to Pune to be with her. I could not leave the care entirely to my son as he had his own career and marriage to manage.

How did you phase out of your career into this caregiver role? What was the response/ reaction of your colleagues, friends, and relatives? How did you cope with it?

My employer was a friend who knew the problem and had met her on a number of occasions. He was a great help when she had her first infarcts and knew the problem. When I finally had to quit, I simply had to explain to him the situation I found during my brief weekend visit to Pune. Being a man of great compassion, he reduced the notice period and relieved me in two weeks after I handed over to a selected relative of his. I played a consulting role on the telephone for four months afterwards for which, too, he made generous payments.

How did you equip yourself for this caregiving role? Please describe the sort of work involved, and how it changed across the years, as she deteriorated?

There was nothing that I would have NOT done for her.

I simply asked her cardiologist and neurologist what I could expect and what I would need to do and did that. Luckily for me, her problems were essentially to do with her heart and there was no further deterioration in her physical or mental condition. I just had to assist her in medically managing her condition.

Caregiving involved seeing that all possible comforts were provided to her— for example:

In short, I did everything I felt was needed to keep her healthy and happy.

Seeing that there was always hot water available in the bathrooms, beds made and her clothes laundered and shelved, wholesome and nutritious food provided on time, etc.
Seeing to proper administration of medicines in the correct dosage and at specified times.
Arranging for, and accompanying her to pathology tests and doctors’ appointments. Arranging to fill in prescriptions.
Accompanying her for, and urging her to do physical exercise as advised by the physicians.
Answering and making phone calls to friends and relatives who wished to keep in touch with her.
Seeing that she did not face any embarrassment due to lapses in memory, particularly with respect to names and places when people visited.

In short, I did everything I felt was needed to keep her healthy and happy.

Question: Was your wife aware of the nature of her problem, and how it would progress? How did she respond to it?

On some occasions, she would be aware that she had problems with both her physical and mental condition. On others, she would be confused. And so, she simply allowed me to run her life. I do not think that she ever thought that her condition would deteriorate. When she could not walk on her own, she would simply hold on to me for support and finish her quota of walk.

I believe that she knew that she was totally dependent on me but that did not bother her, except when I was not around.

Question: Did you face situations where the ignorance of others caused pain or embarrassment to you or your wife?

I was always around for her to avoid the embarrassments…

Fortunately for me, the people who mattered in our lives, knew that there was some problem and treated her with the same affection and regard that they had for her before her infarcts. I was always around for her to avoid the embarrassments anyway.

Please share some instances of isolation you faced because of either the caregiving work, or poor understanding of your situation by others. How do you handle it?

I had to completely overhaul my life style. I had to give up going to my club, going out with friends or visiting them, weekend outings to nearby hill stations etc.

I had to completely overhaul my life style. I had to give up going to my club, going out with friends or visiting them, weekend outings to nearby hill stations etc. That was the most difficult part as I was a gregarious bon vivant. Friends did not understand then, nor have they understood till date, as I used that period to develop a more peaceful and quieter, less expensive lifestyle. That period also saw me develop further into my spiritual pursuits and I am better off for that.

Seeing a spouse lose her memories is sometimes likened to losing a part of yourself, and your dreams of a happy retired life together. What has been the emotional impact of it on you?

Many things that I could not have shared with her during my hectic career life had to be permanently kept away from her as she simply could not relate to any of my stories from those experiences.

Our retirement plan was to travel within and outside India at first and then to retire to a small farm-house. Naturally, all that had to be given up as she was simply unwilling to get out of her immediate comfort zone/familiar environment. Many things that I could not have shared with her during my hectic career life had to be permanently kept away from her as she simply could not relate to any of my stories from those experiences. This was frustrating, as I could not make my peace with her for the years that I was away while she ran the household and our family affairs.

Today, without her, I simply do not have the motivation to revive those plans. I have also taken on a new caregiving responsibility for my father and so, it looks like that the plans have to be permanently given up. I do not think that there will be any great emotional impact on me because of that, as I am a different person now than the person I was before my wife had her infarcts.

As your wife deteriorated, were there some moments when the measure of the loss hit you particularly hard? Could you share some such moments?

In all honesty, no. I enjoyed our time together after all those years of spending so little time with her and was content to be around for her. As I had said earlier, I changed.

Do you have some special, tender moments when you connected deeply with her in spite of her dementia

Escorting her to the park, walking along with her during her walk for exercise, and returning with her back home, were all tender moments. They were very fulfilling and enriching.

Every evening we used to go for a walk to the local park. We would sit together and our friends would come and sit with us after their walks and we used to have a lot of fun at each other’s expense. While mostly she would not understand what was going on, there were occasions when she would participate and those were special moments for all of us. Escorting her to the park, walking along with her during her walk for exercise, and returning with her back home, were all tender moments. They were very fulfilling and enriching.

When you were actively caregiving for your wife, what sort of mechanisms did you use to stay physically and emotionally fit for the caregiving?

Daily Yogabhyas and meditation. I practice Vipassana and these two activities kept me physically and mentally fit. As odd as it may sound, my daily prayer sessions helped too.

You handled your wife’s caregiving along with other family responsibilities, especially the care of your father. How did you balance and prioritize these?

My father came to stay with us just four months before I lost my wife. The only problem was that she often could not recognize who he was. When my father came to live with us, my wife and I moved out of our ground-floor bedroom to an old office room, so that my father could live on the ground floor in our old bedroom. My wife found this very confusing, especially as she often forgot who he was.

My father was and continues to be quite physically independent and so I did not have to do much for him till his fall and fracture much later. Problems of prioritization between care for my father and my wife never arose as my father understood my priorities quite well. It is a sense of déjà vu now with my father’s memory playing tricks on him!

When your wife passed away in March 2009, your caregiver role ended suddenly, and you suffered the loss of a life partner. How did this impact you, and how did you emerge from it?

I am still living with that impact.

on all four occasions earlier when I needed surgery, my wife was by my side during the operations while simultaneously running our household. I will miss that this time around.

I knew my wife as a friend for eight years before our marriage and we were married for forty years. We had a very strong relationship and suddenly to be without that anchor as it were, was initially quite difficult. My siblings, nephews and nieces, grand nephews and nieces, my wife’s cousins, all came at different times to, shall we say, cheer me up and get me back to normal.

I have a major surgery scheduled a few weeks from now. As my big surgery problems loom ahead, I remember that, on all four occasions earlier when I needed surgery, my wife was by my side during the operations while simultaneously running our household. I will miss that this time around.

I have got over the loss but I can’t say that I do not miss her.

Looking back now, what advice do you have for other spouse caregivers?

It has been my experience that each case is different. The extent of the dementia has different ramifications on the depth of care giving.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

I was fortunate in that my experience was less of a strain for us as my wife was not violent or totally helpless or difficult. So, the advice that I can give is likely to be related to experiences similar to mine, and that would be to develop, if one does not already have it, a sense of humour and not to take oneself too seriously.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

What is your wish-list about changes around you (in people, in society, in employment environments) to better support persons thrust into a caregiving role for a person with dementia?

Only one item on the list. Development of support groups everywhere like AA, NA, Alanon etc., for caregivers. Perhaps something like Caregivers Anonymous!

I am available 24/7 to any caregiver, who wants a sounding board, a sympathetic ear, counsel, and in the case of people in Pune, and/or any other help that I can render. I would consider it a privilege to be of help to other caregivers rather than treat them as invaders of my privacy.

I can be contacted via email – rrajgopaul@gmail.com

Thank you for sharing your inspiring story, Ramana!

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This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience.

A dementia caregiver shares her story and her caregiver wishlist

admin — Mon, 29 Aug 2011 08:32:43 +0000

Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver. [note]

Please describe the patient’s state, how long you have been caregiving, and what your current caregiving involves. Tell us who else are involved in the care, and how the work is distributed.

My mother was officially diagnosed with dementia in May 2009 at age 78, though the symptoms were there at least two years before that. She is currently in the middle stage of dementia – she cannot read or write, does not recognise us, cannot bathe herself without guidance, has to be helped to eat, for example, she has to be shown how to handle the spoon. Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum’s dementia onset probably occurred after my father passed away in 2004. I have been looking after her for about 2 years now.

There have been two major setbacks in these two years.

She developed malaria and fell down in the toilet in August 2010. She grew more disoriented after that, and the malaria medicines and accompanying nausea were very difficult to handle.
She fell after two seizures in July 2011.

Currently, my caregiving work giving involves constant supervision day and night.

Mum does not like to be left alone; she has a room of her own and I sleep in the balcony leading out from her room. I have two maids: one works from 9am to 7pm, and the other from 8pm to 8am. The morning maid sees that Mum performs her morning ablutions and has a bath. This maid gives Mum her breakfast. Mum is made to walk up and down the corridor every two hours. They play catch with a large soft ball. Mum listens to music. If the weather is OK, she takes an evening walk in the garden below our building. On Sundays, my husband and I take her to a sea-facing park to sit by the sea.

The night maid prepares and gives Mum her evening meal, after which Mum is given a glass of milk and a fruit. This night maid sits and strokes Mum’s hair till she sleeps.

My role is mainly supervision or helping on days when Mum will not listen to the maids to swallow the tablet etc. I coax her gently, and most times, she responds. The maids take leave roughly once a fortnight or when they are unwell, and I am the replacement maid.

My husband supervises the day maid to see that the food and exercise is timely. My son’s role is limited to a daily hug. If Mum has been awake all night, I ask him to sit with her the next day as and when he is free. My son is a final year law student, currently working as an intern, so that means that apart from study, he works a 9 hour shift.

What are the most challenging problems you face currently as a caregiver?

The sheer grind and drudgery of caring, as well as mounting expenses and decreasing income.

It is scary to think of what the situation will be 10 years down the line when I will be 65, my husband 80, and my mother, 90. Will I have the same amount of energy? Will I be able to still work and pay the staff I will require? And will I get staff?

When I first employed the maids, I was paying each of them Rs.250 per day per shift. I now have to pay Rs.270 for that same work. This works out to over Rs.16000 per month, and if you add the doctors’ fees plus medicines, it would be Rs.18000 to Rs.20000.

What is your wishlist as a caregiver, in terms of what you would like from various support systems and persons around you?

Before I write this I must emphasise that I write it from only from my viewpoint — I do understand that many of the items that I wish for may not be feasible or practical, so to some extent this will be a one-sided viewpoint.

From the wishlist…
…Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff.
…Government should check on Ayah bureaus and rates should be fixed ( as per labour laws for 9 hours a skilled worker in a hospital gets Rs.200 per day, and a semi-skilled Rs 185)

Government sponsored awareness ads on TV about the symptoms of dementia along with how to care for them.
More well-run memory clinics at Government hospitals could be sponsored and run by corporates or NGOs.
Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff. I understand that most of the existing staff will be very reluctant to retrain but if it is a well-run program it will be successful. .
Government should check on Ayah bureaus and rates should be fixed ( as per labour laws for 9 hours a skilled worker in a hospital gets Rs.200 per day, and a semi-skilled Rs 185) .
Government -NGO collaborated day care centres at least 4 for each big city with payment based on your ration card; you pay more if you are in the high income group. .
Medical council should write to all their members about dementia – and this should be followed up by NGOs who visit GPs area wise with a presentation and pamphlets. .
Using lists of GPs available from the medical council, the NGOs and volunteers should follow up with GPs regarding dementia awareness and resolve any queries that GPs have. This follow up could also be a research project along with colleges and Pharma companies ( who will benefit by increased detection) .
From Pharma companies, dementia medicines available in syrup form as most patients have problem in swallowing tablets. .
From NGOs, work with ALMs (advanced locality Management) to set up a volunteer base of elders who will check up on those needing help in their locality. Actions taken could be something as simple a home visit to cheer up a dementia patient or an elderly person. .
Senior citizen groups could also help by arranging home visits to dementia patients.

That is quite an exhaustive wish-list. Could you select a couple of items that would make a great difference to you and improve your ability to care/ balance your life around the caregiving?

Maybe they can form a home visit group and engage patients and other elderly immobile persons who are home-bound, by doing activities like singing songs with them or playing simple games.

Lowering of ayah bureau rates.
Help from senior citizen groups for home visits. There are several senior citizen groups in Mumbai, particularly amongst morning walkers. Maybe they can form a home visit group and engage patients and other elderly immobile persons who are home-bound, by doing activities like singing songs with them or playing simple games. This would really help in my Mum’s case because she is so lonely at times and she would like to be part of a chattering, jolly group.

What about help from neighbours, friends, and relatives? Do you have any wish-list regarding that?

I’ve realised that I have to ask for appropriate help rather than expecting them to read my mind.

Regarding wish-lists of what neighbours, friends, and relatives can do to help us, I think getting such help depends on us. I’ve realised that I have to ask for appropriate help rather than expecting them to read my mind.

For example, I have asked my sis in Bangalore to call every alternate day and just talk to Mum; my sister can tell her what she cooked that day, what her daughter (Mum’s granddaughter) is doing, and other simple stuff which cheers Mum up a lot. My mistake earlier was that I did not realise that my sis did not have a clue as to what Mum needed because my sis is not there on a day to day basis.

I now also plan to rope in a few of Mum’s friends to call her and just talk simple stuff. Earlier they used to say (about Mum), “Oh she never responds” and then they would stop talking to her and it would be just me giving them an update on Mum’s health.

You have been caregiving for 2 years now. How (if at all) has the caregiving environment and support changed in these years?

The memory clinic (free) at Nair Hospital has closed down – so I will have to find a doctor. That is a negative.
Expenses have shot up and income is not keeping pace. Worry about inflation affecting my budget.
Age catching up with me – how will I cope if I fall ill?

Any other comments/ suggestions?

…caregivers are not superhuman; we cannot be oozing with the milk of human kindness always. Just like everyone, we also have our good and bad days.

I feel that whilst highlighting awareness of dementia, people should also acknowledge the caregivers contribution. Most of us caregivers already feel so useless at times seeing our loved ones sliding into oblivion, and though there may be some caregivers who are careless or indifferent, there are so many other caregivers who struggle and try their level best to do what’s right.

Also, people should acknowledge that caregivers are not superhuman; we cannot be oozing with the milk of human kindness always. Just like everyone, we also have our good and bad days.

Please try, once in a while, to walk in our shoes.

Encourage us so that we are uplifted to strive harder. Please try, once in a while, to walk in our shoes.

Thank you, Kalpana, for sharing your situation, and all the suggestions and the very interesting wishlist. Let us hope that professionals and policy makers will act on these very valid suggestions and support dementia and its care more effectively.

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Long distance caregiving: a caregiver describes the challenges and her approach

admin — Fri, 26 Aug 2011 13:31:50 +0000

Sudha (name changed) has a father with dementia. Though Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches.[note]

Please describe the patient’s state and the location and role of various family members involved in the caregiving.

My father is in his eighties, and has mild to moderate dementia. Some years ago he was treated for a mild ischemic stroke and mostly recovered. Last year he was treated for sodium deficiency and a very bad urinary infection.

My parents live in Noida, near Delhi. My older sister lives in a flat across from them. I live in Portland in the USA along with my husband. My younger sister, who is single, lives in Seattle.

Between us all, we have learnt to manage my father’s conditions, and his sodium level and urine are monitored regularly.

How is the caregiving coordinated between you siblings? How is the schedule decided, and how often and how are status updates exchanged?

My older sibling, who lives near my parents, checks on my parents once or twice a day for about 15 minutes.

I and my younger sibling live in the USA and both she and I call my parents morning and evening at different times. On good days I talk to my parents about what is going on in our lives. On a difficult day, I talk about their problems and offer support or a possible solution. I also visit India as often as I can, and so does my younger sister.

I talk to my younger sister or exchange emails with her almost every other day, especially if our parents are facing some problem, or something needs to be coordinated for them.

Please describe how work is distributed and coordinated between various paid help, and how absences are handled.

My father is mobile but needs a little help climbing stairs, walking to the bathroom etc. Two attendants, one day attendant and one night attendant, have been hired to help him with his activities. This is supposed to give 24 hour coverage for him and if one of the attendants does not come, the existing one stays on duty till the agency sends a replacement. Most of the time this arrangement has made sure that my father had an attendant to help him all the time. There have been one or two scary times when my parents were alone (without any attendant) for a few hours which luckily passed. The agency was severely reprimanded for this. There is a driver to take my mother or father wherever they need to go. There is a maid who does all the cleaning, cooking and house work. The maid has been the most erratic –it is very difficult to find maids to work for old people. When there is no maid, the attendants are paid extra to pitch in for some of the house work, and a cook and part time worker is hired. My mother has to manage all this, and it is quite hard sometimes.

Please describe which caregiving tasks are most difficult for your mother to coordinate or handle herself.

Managing too much help is hard sometimes for my mother , as these workers try to take advantage of old people’s kindness. I try to keep an eye on them, to the extent possible from a distance.

Sometimes my father is frustrated and angry because he feels a loss of control at not being able to do everything he used to do – going to the bank, handling his medicines etc. When he takes his anger out on my mother, it is very hard for her, though she is getting better at handling it. Fortunately my father is able to recognize what he has done and improve his behavior after some time. But it takes its toll on my mother, and me and my sister sometimes I have to keep counseling her to not take it personally.

…I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically

My mother handles all the household finances, paying bills etc. She is quite capable of doing it, but sometimes gets intimidated by my father who passes comments about the way she is doing it, because he used to do all this and does not like her doing it now. I manage the situation by telling my father that Mom is doing it because she also needs to learn how to do it. Fortunately over the last few years, I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically. This has significantly reduced the work required and my father has been happy about this also.

Which caregiving skills did you, your siblings, and your mother have to learn? How did you learn them?

All of us just learnt as we went along. Last year was very tough as my father had extreme anxiety and paranoia as a result of his illness. We learnt to identify the triggers which caused the anger and tried to avoid those situations from coming up. We also took the help of a psychiatrist and psychologist familiar with geriatric issues. Small doses of anti-anxiety medication helped a lot.

We also worked on training the caregivers in giving medication, personal care, handling behavior issues. We had to go through a number of very poor attendants before we found reasonable ones.

What sort of technology aids do you use to reduce work and smooth coordination?

All bills that can be paid electronically are set up for that. I mentioned investments being set up, so that very little is sent by paper letters, so there is less paperwork to manage. I am able to check their bank account online (from the USA) and monitor it for activity.

My parents have a computer and printer in their house. My father used to read email till about a year ago. Now he likes to use the computer do some reading and listen to music. I have set it up for him to do so easily.

I have also trained the attendant to operate the DVD player and MP3 player for my parents, so that my parents can listen to music or watch DVDs of their choice when they want.

I want to give this example of the cell phone phonebook. My father had been getting frustrated with his paper phone book as he could not always easily find the phone number of the person he wanted to call. Sometime earlier, I had entered all his important phone numbers in his cell phone and shown him how to dial a number from the cell phone phonebook. He had been thrilled with having a mobile electronic phone book. Being a scientist, he still gets excited about new technology. Last year my father was still a little disoriented on return from the hospital. But much to my surprise, he had grabbed his cell phone and called all the people he knew and chatted with them. He had remembered how to use his cell phone phonebook and found it easier than the method he had used all along!

To me this destroys the myth that all new technologies are hard for old people to grasp and they should not be ‘burdened’ with them. It is one of the myths our society has – ‘as you get older, you understand less’. I think a person with a curious mind can be kept engaged at any age with a little help. My father was a scientist by profession and even today loves to learn and use new things. I think he therefore enjoyed trying to learn about cellphones. I also feel some of the advances in technology can be very well utilized for old people who are losing some of their cognitive abilities. The tablet is another thing whose visual aids would work well – I have yet to buy one and try it out with my parents.

Please describe any systems you have in place so that your father’s care goes on smoothly.

All important phone numbers of family, friends, doctors, repair people etc. are displayed in a prominent place on the wall.

All important phone numbers of family, friends, doctors, repair people etc. are displayed in a prominent place on the wall. There is a 7 day medicine organizer box which my older sibling fills up once a week. The attendants are trained to give the medicine from that box. The box is kept far away from my father. A medicine chart is made and updated as needed for my mother’s medicines and so far she fills out her 7 day organizer box herself.

Which other tasks do you need to coordinate for your ageing parents?

Between us siblings, we co-ordinate home maintenance, car maintenance, annual bills, rental of their property, regular doctor visits, occasional visits to other relatives and outings. I and my younger sister do many of these tasks remotely from the USA – we have learnt to work with the time difference between the countries. Setting up things to use the Internet for bill payments and managing investments has proved very helpful. We also discuss what needs to be done in my twice-a-day phone calls to India, and my frequent calls to my sister. I also visit India every few months and I have a long to-do list for each such visit. Similarly, my sister visits India whenever she can manage to get leave.

Has there been an emergency when none of the siblings were at home?

Fortunately not. There is a backup list of phone numbers of neighbors, taxi drivers, grandchildren to handle such a situation. Ambulance numbers are also readily available, though once when my sibling had to call an ambulance it took very long. We have tried to get numbers of more reliable ambulance companies.

Please share some particularly challenging instances of caregiving that you have tried to handle from USA. What works, and what did not?

I have found that what works is trying to stay calm and helping the parent handling the situation. Sounding too anxious does not work.

The hardest thing about being so far away when there is a health crisis with my parents, is that everything seems so much worse. I have to overcome the feeling of helplessness and try to be of help. Times when my father has been in the hospital have been hard to handle, especially as some doctors do not react well to ‘these people from the US who think they are so smart’ questioning what they are doing and I have almost come to loggerheads with doctors over this.

I have found that what works is trying to stay calm and helping the parent handling the situation. Sounding too anxious does not work.

You have mentioned that you call twice a day, trying to listen and help, and also resolve various tasks. How does this affect your ability to pursue your other commitments and interests? Is there an impact on available time? Vacations? Are you able to set this aside while working on your professional commitments? How do you juggle the various roles?

I make sure I call at approximately the same time every day no matter where I am.

I have to learn to compartmentalize the different things I do in my life and sometimes it is not easy. There are days when after I have heard something disturbing from my parents that I stay upset for some time. I try to manage that, and focus on my professional work during the day. I have dropped some things in my life(like keeping in frequent phone contact with a number of my friends, some interests) because I simply do not have the time now. I make sure I call at approximately the same time every day no matter where I am. If I am not able to, I either call them beforehand about the timing change or have my husband call. I do this even when we take short vacations usually within the US. Cell phones and internet have made communication a lot easier. At the moment any vacation I or my husband take away from work is spent in India with my parents. When I visit India, I also manage to do some of my professional work from there – again possible thanks to the internet.

Looking back, what things would you have done differently to make this phase of your life smoother?

At some level, I always knew my parents would need help as they got older. Though I have not lived with them since I was 16(I am in my late forties now), I have seen them regularly and been in constant touch. Both my parents and myself miscalculated the level of involvement the local sibling would have with them when my parents got older. At the back of my mind I felt reassured that one of their children was so close by, so never thought of making big decisions like moving them in with me (in the USA) or moving to India myself to take care of them.

People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough.

What caught me unawares was when I found we had been a ‘fair weather family’. Things were good when the going was good. But when my older sibling’s own family grew with children’s spouses and grandchildren, they became the sole preoccupation in her life. She also got more resentful because she felt our parents were not meeting some of her expectations. In my view, as children, all of us siblings should be past expecting something from parents – it is time for them to get something from us. I realized that I and my elder sibling were poles apart on this and many other issues. Strains appeared in the sibling relationships.

Looking back – I wish I could have anticipated this. I know hindsight is 20-20. People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough. Being hit with such mismatches suddenly, in the middle of a crisis, leaves you with fewer options.

What do you see as the practical considerations for moving in with your parents, or for making them move in with you?

My husband and I are still working in our respective careers and we need to continue to earn. At our age it is not easy to have careers/earnings by moving to India. Any such moving back to India and restarting a career here is best if done at a younger age. Also, one advantage of having earnings in the US means that I am in a better position to help my parents financially. Life in India is so expensive these days.

Had my parents moved to the US at a younger age, they could have become part of the system here and got insurance.

My parents could come to the USA to move in with me and my husband, but it is impossible to get health insurance for them in the US. With the exorbitant healthcare costs in the US, only a person with immense wealth could handle them. Had my parents moved to the US at a younger age, they could have become part of the system here and got insurance.

Many of your peers must be going through a similar phase with their parents’ care. Are there some other approaches others have used, and what are the pros and cons of these differing approaches?

Some of my Indian friends in the US moved their parents here when they were younger. Their parents got themselves busy with the US lifestyle and were also able to get insurance. This approach made it a little harder for parents, because they were younger and also more independent when they moved, and so they had to give up that independence to an extent. They had to make adjustments. But the children they live with made adjustments too, and accepted more constraints in their lifestyle. For such an approach to work, there has to be flexibility on both sides.

all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85!

Another American friend of mine who is divorced has her 98 year old mother in an assisted living home. Now this mother is at the stage where she needs constant monitoring, but a few years ago she could participate in social activities. The main flaw in this setup I hear, is that all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85! Regular visits by family help a lot. In my friend’s case they have a loving family of grandchildren and great grandchildren who visit. Unfortunately that is not true of many people in these homes who are left at the mercy of the services there. Placing parents in a home is an option only if you can afford it, or have bought long term care insurance – today the cost of a ‘full service’ assisted living place is $7000 per month.

Are their mismatches and misunderstandings between you and your siblings? What could have reduced the problems faced on these fronts?

Yes – these mismatches are basically due to personality differences and the different dynamic each of us has with our parents. With my older sister, it is the issue of control, more so because she was in complete control of her and my parents’ environment for many years. She sees the other siblings’ frequent visits as interference and a loss of control. She does not understand that the overseas siblings visit often because they feel enough is not being done for the parents’ caregiving.

The only way I have found to alleviate these problems is for each of us to handle different things and avoid discussions on controversial topics. It is not an ideal answer because often clear communication is needed, but that is the best I have been able to do.

Your father’s condition could regress further. You mother, too, is ageing, and may not be able to continue coordinating care for him. Do you envisage a more major move for yourself back to Noida, and what sort of compromises would that involve? What are your plans for the future?

Today if they need more help, my answer will be for me, my husband and my younger sibling to take turns with longer stays with them. Each of us would have to take more leave of absence from our work. As I mentioned earlier, it is not easy for any of us to completely move to India.

What would you say is missing in your parents’ life/care today?

If all the workers hired for my parents care are present, then all their physical needs are taken care of, which is a big help. What is missing is the emotional support, mental stimulation and engagement. That would be good for both of them. Attendants are not able to provide any mental stimulation for my father. Some of it we try to provide with TV, reading, music and talking to them on the phone. I and my younger sister, both of us try to give them some emotional support, but we live far away. My elder sister (who lives close to them) does not want to devote enough time to sit and chat with them about their problems/issues, but she does some required tasks for them as needed. Still, I tell myself that my parents are better off than many other old people, and for this I am grateful.

Today I see the merits of the joint family system – the old and the young helped each other. It started falling apart as people wanted freedom etc., but I think it is a good option for older people when they need more care, to be staying with younger people.

Any advice, lessons learnt, musings, in summary?

It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot.

Always hope for the best and plan for the worst.
It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot. Give them positive feedback on what they are achieving and make light of any mistakes they have made. Try to find new things that may interest them – you may be surprised at what you find. Recently my husband was talking to a 93 year old neighbor of ours who lives by herself. She was getting depressed and he showed her a baseball game schedule on his phone (she loves to watch baseball on TV). She was thrilled to see this new thing. This goes back to my theory about using technology gadgets/other new things to keep older people engaged.
I find it a pity that as a society we find old people an inconvenience. We should try to focus on what they can still offer – it may also make caregiving easier in the process. I know this thought does not apply when the person’s condition has advanced to a point where they cannot participate in anything. But let us at least not give up earlier than needed.

Thank you for sharing your thoughts and suggestions in such detail, Sudha! Long distance caregiving (also called remote caregiving or overseas caregiving) is very tricky, and your interview will be very helpful for many persons in similar situations.

Readers are also referred to our page that discusses long distance care: Long-Distance Caregiving for Dementia Patients in India

[Click here for the list of all caregiver interviews]

New page and new document for using trained attendants for dementia home care in India

admin — Wed, 20 Jul 2011 04:21:07 +0000

The Dementia Care Notes website has been updated to include a discussion on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here:

Using Trained Attendants for Dementia Home Care

The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care.