Coordinate caregiving between family members

Ideally, families should plan caregiving together and divide  the work and the financial impact in ways that everyone is happy with. They should act in unison and keep each other informed of developments. At least, there should be reasonable agreement, not discord and mistrust.

The step of joint planning is often missed because families do not realize it is required. On this page:

• Planning dementia caregiving together
• Problems families may face while making decisions and sharing work
• For smoother joint caregiving
• Explaining to pre-teens and teens and involving them
• See also…

For simplicity of discussion, this page assumes that the dementia patient is a parent and that the children (siblings) are the relatives who have to coordinate care. The sibiling living with the parent for caregiving is called the “live-in caregiver”; the others, supporting from a distance, are called “distant caregivers”.

Planning dementia caregiving together

Caregiving for a dementia patient extends for years, and gets more intense and overwhelming with the passage of time. Planning the care together in the beginning ensures that all stakeholders remain involved and informed, and all concerns are taken care of. Given the enormity of the task, the live-in caregiver will most probably need help from others; joint planning in the beginning improves the chance of smooth sharing of work and responsibility as the dementia patient deteriorates.

Before family members can plan care or discuss concerns, they need to understand the basics of dementia and how it will affect the patient and what sort of planning is required. They need to be realistic about what dementia care involves, and honest about what they can or cannot do.

A major decision is who will care for the parent at which stage of the disease. In India, children sometimes adopt a cycle-the-parent approach, with the parent being moved between the children every few months.  Some things to keep in mind for this:

• A parent with dementia may be traumatized by these moves and unable to do frequent adjusting. The parent’s abilities may deteriorate with each move.
• Taking in a parent with dementia requires major life changes. Is the apartment big enough? Can it be amended to make it safe for the parent, and prevent the chance of wandering? If an attendant is hired, more space may be needed. Are there children preparing for exams, and will they be affected because the caregiver’s energy is absorbed in caring for the parent? Is there a small child whose crying will disturb and agitate the parent with dementia? Are there pets in the house, and is the parent comfortable with pets? The family may need to give up house-guests and parties and loud TV because they disorient and upset the parent. Family outings may not be feasible. Are all family members ready for such adjustments?
• The live-in caregiver who is looking after the parent in the advanced stage is likely to do so till the end, because it is not easy to move the parent across cities in this state. Late stage caregiving involves lots of home nursing, frequent illnesses, and tension, and can stress a family if everyone wasn’t ready for these consequences.

All these aspects have solutions. But being aware of areas that could cause discomfort or need adjustment helps everyone discuss and plan better.

While the parent stays with one child at any given time, others still need to help in the care. They can help by running errands, taking care of certain aspects of dementia care (such as doctor visits), visiting the parent and taking over care for some hours or days so that the live-in caregiver gets time for essential tasks or short vacations. At a minimum, distant caregivers should be available for information sharing and providing emotional support. Back-up plans are needed to handle care if the live-in caregiver falls ill or faces problems that make caregiving infeasible.

The family can collectively decide how to discuss contentious issues and resolve areas where they differ, so that conflicting views don’t cause a division within the family.

Family discussions on end-of-life decisions can get bitter
if family members do not trust and respect each other

In addition to the physical care required, the parent may have had investments and been a tax-payer. As dementia advances, the patient cannot handle these responsibilities, and these have to be taken over by caregivers.

The family needs to decide who will handle work like investment management, paying tax, and filing returns. Family members may also need to discuss criteria to be used for making decisions.

Discussions are also required to agree on criteria for choosing the medical and nursing care, especially for the end-of-life stage when tough decisions may need to be taken, and siblings may have divergent views.

Another aspect to discuss is the sharing of the cost.

Essentially, the family should aim for a foundation of trust and shared responsibility. The earlier this is done, the smoother the care will be. Information sharing is a must.

An interesting article that discusses how a family needs to get together provide care is available at Alzheimer’s Reading Room: Five Articles to Discuss On Mother’s Day with Family. The author points out that 40 percent of caregivers end up suffering from depression, and that it is possible that the caregiver will become sick physically or emotionally. Families must consider and discuss: Who will step into the vacuum when the current caregiver can no longer take care of the patient?

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Problems families may face while making decisions and sharing work

Communication may reduce over time

These often happen because family members don’t invest enough time in staying in touch.

Often, when the parent is diagnosed with dementia, the family doesn’t hold a proper discussion on how they will approach caregiving. The immediate care falls on the child closer to the ailing parent or in a better position to help (the child who has more time, more money, more skills, more concern, or more flexibility in redefining life to fit caregiving in). This caregiver is too busy caregiving to spend time explaining stuff to distant caregivers, and thinks they don’t actually care about what’s happening, while siblings feel they are not updated on the status.

At times, when the live-in caregiver talks and gets emotional, the distant caregivers don’t know how to handle it. While the live-in caregiver feels unheard, the distant caregivers may feel they are being dumped upon.

The live-in caregiver

• I’ve already got my hands full doing all the stuff that needs to be done. I don’t have the time and energy to waste in explaining it to others
• They don’t understand anyway. They seem to think I’m not doing enough. Their suggestions are pointless and totally removed from reality.
• They don’t understand what I’m going through. They totally avoid talking to me about my problems. As for sympathy, ha!!

Distant caregivers

• We aren’t informed of the status
• Sometimes, when we call, we are just told it is a bad time, and then we are not called back. Why should we keep taking the initiative?
• We don’t know how to handle that constant complaining of the caregiver.
• Look, we are busy, too. So what if we are not caregiving! Does that mean we don’t have problems of our own? Why should the caregiver keep dumping on us? He/ she agreed to do this, no?

Criticism creates a negative environment

Problems happen when concerned but distant family members start getting critical of the live-in caregiver, faulting them for not taking proper care, listing perceived mistakes and talking at length of what more should be done to keep the parent happy. They do not balance this with appreciation of what the live-in caregiver is doing, or mentioning all the things that the live-in caregiver is doing right.

Conversely, live-in caregivers also act critical of distant family members, blaming them for not being there, and acting dismissive about every comment and suggestion. They view anything others say with hostility, and exclude them from the sphere of the parent and caregiving.

Support groups and bulletin boards abound with stories of people hurt by the behavior of the loved-one/ sibling – some are live-in caregivers who feel the distant siblings  are not sharing enough of the work, and others are from the distant caregivers who are very dissatisfied with the care being given by the live-in caregiver. Examples: these entries at caring.com  ( I do all the caregiving work, and my “golden boy” brother gets the glory, Now that Mom might be dying, my absentee brother is suddenly showing an interest–in her money ) show suspicion and resentment happen between the live-in caregiver and the distant/ occasional-visitor caregivers.

Rifts are caused by genuine disagreements about the parent’s state and what the parent wants

Visiting siblings often perceive the parent in a very different way from the live-in caregiver.

To the visitors, the parent may seem affectionate and normal, eager to talk and go out.  The parent often looks far more active and coherent than what the live-in-caregiver has been describing.  When the visiting siblings talk to the parent, the parent claims that the live-in caregiver is neglecting him/ her (not being given food, being denied use of the bathroom, and such stuff), and not taking him for outings or not giving him/ her the favourite foods and other such things.  The visitor, seeing the parent behaving normally, and also seeing how hassled and frustrated the live-in caregiver is, assumes that the caregiver is being nasty and cruel when no one is watching.

The live-in caregiver’s perspective is different. The caregiver feels betrayed by the parent’s complaints, which are not factual. The affection the parent showers on the visitor seems like mockery after all the ways the parent has been exploding on the live-in caregiver. It surprises and hurts the caregiver to see that the parent seems more alert and coherent when the visitor is around. Worse, as soon as the visitors leave, the parent acts even more irritated and nasty and uncooperative. This makes the caregiver feel unloved and taken-for-granted.

Caregivers are not able to ask for help

This happens when overwhelmed caregivers feel the distant siblings do not understand the reality, are critical, are too far away, or are incompetent in handling actual care. Caregivers feel that, given that the siblings are disconnected with reality, it is pointless spending time and energy explaining things. As a result, the caregivers get more and more drawn into care, get isolated from the rest of the family, and have no back-up for days when they are unwell or facing other commitments.

The distant caregiving siblings may cut off over time because they feel their concern is being dismissed, and their suggestions and presence is unwelcome. They may consider the caregiver rigid and as someone excluding them. They may be  suspicious of the decisions being taken by the live-in caregiver and feel the parent is not being taken care of properly.

Coordinated caregiving may cause unresolved issues of the past to erupt

While these issues do not seem to matter when the children live separately, old tensions may rise again when the children need to coordinate caregiving. Sibling rivalries, resentments, and difference in standard of living wake up at this unfortunate time.

In a worth-reading article, When Elder Care Brings Back Sibling Tensions, (Time.com), Francine Russo describes how she was the “bad sister” when her mother’s health was failing.  She realized this only at the funeral, and worked hard to repair bridges with her father and sister (who had been there with her mother till the end). As she says,

Eldercare and end-of-life debates often hit families after decades of negotiating nothing more serious than where to spend Thanksgiving. We can be grownups with successful careers and kids of our own, yet all the old stuff ambushes us: sibling rivalry, entrenched roles and resentments, the way our family talked or didn’t talk about important things.

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For smoother joint caregiving

Planning together is an essential step for family members to share caregiving smoothly amongst themselves. Everyone needs to understand what is involved, and open communications go a long way. In spite of this, as discussed above, a variety of problems can crop up.

Most of the problems of coordinating care can be resolved by changing one’s mindset by taking in more information and opening oneself to multiple perspectives. With this base, and with honest, open, and constructive communication, families can handle the joint care more smoothly and without bitterness. People will always have divergent views, and will also differ in their abilities and willingness to do things, but this need not cause rifts between them.

If faced with conflicts and rifts over joint caregiving, here are some suggestions:

Live-in caregivers who already feel tired and isolated will find it far easier to handle the situation if they change the way they look at the rest of the family. Some thoughts:

• Our siblings may feel concern even if they are not directly caring for the parent. We should not doubt their motives; what if we are wrong?
• We should not blame them for not being present. Such blaming does not help
• As our parent worsens and caring becomes tougher, we will need the support of our siblings; every bit helps.
• We should not assume they are incompetent and inconsiderate caregivers just because they are not currently providing care
• Just as it has taken us time to understand what care involves, they also need time to understand what we are doing
• Maybe, because they are not as overwhelmed as us, they can have fresh, creative ideas
• Even if they don’t seem willing to, or comfortable with the idea of actual caregiving, perhaps there are other things they can help us with. We can focus on what they can do rather than one they cannot, and give them specific tasks in areas they are comfortable.
• In late-stage dementia, all of us will together need to reach consensus for tough decisions, such as on tube feeding and aggressive medication and hospitalization. A congenial discussion environment will make this stage easier for all of us. Let us not reach a point where we can’t confide in each other.
• If they understand the situation, they will be in a better position to take over care if we face a problem or needs a break.

As distant caregivers–siblings/ other relatives at a distance–here are some thoughts to mull over:

• Caregiving is a very stressful, tough job.  If we cannot help in it, we should at least support the live-in caregiver.
• We must understand about dementia and behaviour, and about what caregiving involves.  We must also know the systems in India if we have to give meaningful suggestions.
• We cannot assume that what we see on short visits makes us an expert on the parent and on caregiving. Things are different when they have to be handled 24 x 7.
• We have every right to feel concerned, and to express our opinions and be heard, but we have to handle the situation with sensitivity because the live-in caregiver is already doing a lot and is stressed and sensitive. Suggestions can be offered in a helpful and gentle way, rather than as criticism or fault-finding or with an air of superiority.
• Instead of just coming up with suggestions on what the caregiver should do, maybe we should look at what we can do to support caregivers. Maybe we can take more initiative and stay in touch, listen to their problems, and show affection and empathy. We could offer to do chores, and try taking over caregiving for some time to provide the caregiver a respite
• If we genuinely feel the live-in caregiver is unable to handle the situation, we must consider interventions that will help. But we must not underestimate the caregiving load/ stress before we take it on ourselves. Things always look easier at a distance. If all that literature talks of caregiver stress and 36 hour days, maybe it is not as easy

The behaviour of a dementia patient can be misleading in a social setting. A dementia patient has a decline in memory, but social skills are not affected till a later stage. As a result, the patient knows what sort of behavior works well with visitors, and exerts himself/ herself to act “normal”. This is very tiring, though, and as soon as the visitor leaves, the patient is absolutely exhausted and extremely difficult to handle. Max Wallack’s article, Alzheimer’s Patients Can Deceive Outsiders with Their Behavior, explains this very well. An excerpt:

One of the hardest things about caring for an Alzheimer’s patient can be the fact that there is frequently a feeling that no one else really knows what the caregiver is going through.

Adding to this frustration, is the ability that many Alzheimer’s patients have to ‘pull themselves together’ and present a seemingly ‘normal’  front to other people, even to their physicians.

Visitors who find the patient ‘normal’ and wonder why the live-in caregiver looks tired or complains about problems, may get a new perspective of the situation by reading this article.  Once they understand that the visit (which seemed to go smoothly) actually tires the patient so much that the live-in caregiver will bear the brunt of it later, the visitors may be more compassionate towards the caregivers.

So, how can communication be opened up and made honest, without trying to hold back suggestions?

Live-in caregivers can try the following

• Give the siblings a realistic, matter-of-fact picture of the parent’s state
• If they seems ill-informed of dementia and caregiving, provide them authoritative, “neutral” sources,  like books/ links to sites, and then supplement these with personal anecdotes, so that they grasp the information without thinking we are acting like martyrs all the time
• Welcome their perspective, comments, and suggestions
  • if a suggestion is good, gracefully accept it, and not get defensive because we didn’t think of it ourselves.
  • If a comment or suggestion shows that they don’t understand the reality of the situation,  explain things
  • if the suggestion has merit but seems impractical, we can discuss it further

Other family members at a distance can try the following

• Be willing to invest time and energy in truly understanding the situation
• Volunteer to help with some tasks to get a practical feel of the situation, maybe take over care for a few days to get a proper feel; our suggestions will be more relevant after such experience
• Express appreciation for what the live-in caregiver is doing right
• Think of practical ways to make caregiving more smooth, and convey this in a constructive manner
• If concerned about something, even if there is no solution to offer, find a way to communicate and discuss this in a manner that is free of any blame so that we can jointly come up with solutions
• Be assertive about our need to participate and be involved, while also reaffirming to the live-in caregiver (through words and actions) that we care for the parent and the caregiver

All said, we caregivers are the persons at hand for the patient and we need to take bulk of the decisions and do bulk of the work. If, in spite of our attempts, we are unable to stay connected with siblings, let’s just focus on what we are doing. We have enough to feel stressed about doing the caregiving job at hand.

Equally, if we are at a distance, and we have firm reason to believe that the live-in caregivers, for whatever reason, are unable to handle the care properly, we have to explore how to correct the situation so that the patient is cared for well enough. ways to act to

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Explaining to pre-teens and teens and involving them

Everyone in the family is affected when some in the family develops dementia. Often when families look at options or try to make plans, they do not involve children. They do not know how to explain dementia to the children. They either assume children will just somehow adjust, or they try to protect the children from any contact with the dementia patient, assuming the children will be harmed or psychologically impacted.

Young children are often bewildered by the patient’s behaviour. They are unsettled when they see a beloved grandparent look confused or explode or behave in strange ways. As the odd behaviour and memory loss increases, the young children get frightened, or start distancing themselves. They may get irritated and snap when patients ask repetitive questions, or even mimic the irritation, anger, or despair they see the adult caregivers show.

Yet, children need to understand what is happening, and to be involved in decisions. Pre-teens and teens can understand dementia and adjust to it, and many of them feel great involvement and affection for the ailing grandparent, and try to be supportive once they grasp what dementia is. Even if they are not directly involved in caregiving, if they understand what is happening then the care of a dementia patient can bond the family rather than cause distancing between them.

Looking after a dementia patient often takes up a lot of time and energy of the adult caregivers, reducing what these adults can spend on their pre-teens and teens. It is necessary that the children understand what is happening and why this is necessary so that they can accept the situation at home, and also cope with any comments from outsiders. Children who feel the family is open for such discussions may continue to confide their problems and ask for help in case they face problems outside, like comments from outsiders, or embarrassments because a grandparent acted strangely with their friends.

Here are some good links on how to explain dementia to children: Just for kids and teens, How to tell your kids, dementia and children, helping children understand, how to tell your kids, and disease information for children and teens.

Seeing the HBO tapes, Grandpa, do you know who I am, can also help..

In an open atmosphere where the entire family discusses the situation and shares the understanding of the challenges and looks for solutions, children should not feel unsettled or excluded. Age-appropriate explanations and discussions can go a long way in making youngsters accept the situation. Often, once they understand, they are able to show more love and patience to the grandparent, and bond faster than adult caregivers.

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See also….

Books and DVDs: The book, Alzheimer’s: A Caregiver’s Guide and Sourcebook, by Howard Gruetzner, discusses family conflicts and family responses to care in detail.

More from the web:

Read about sibling relationships, possible problems, and some suggestions at:  Caregiving and sibling relationships: challenges and opportunities

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