Voices of dementia caregivers are subdued in India, because dementia is often confused with old age, and the caregiving challenges and heartaches are not acknowledged or appreciated socially. We caregivers therefore, are unable to pool our experiences and get a sense of community support.
Here are some dementia caregiving experiences shared online in India.
- A month-long blogfest on dementia and caregiving
- One year of caregiving for a bed-ridden patient
- Living with Appa
- Progressive Supranuclear Palsy, a rare cause of dementia: a daughter explains
- A carer’s story: My mother my child
- Visiting a dementia patient
- Home Care or Institutionalization decisions, and caregiver guilt
- Supporting a caregiver: My buddy Vana
- Shraddha: Giving Up Exisiting To Care
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A month-long blogfest on dementia and caregiving
Caregiver Swapna Kishore blogged every day for the month of January, 2011, on the topics of dementia and caregiving. The blog entries describe her personal journey as a dementia caregiver for over a decade, and share the various challenges faced in getting a diagnosis, learning caregiving skills, coping with criticism, and making adjustments to handle care for her mother, the dementia patient. She also describes her experiences as a volunteer trying to spread dementia awareness and helping caregivers through training and through her website (this website). The blogfest has 31 entries that total over 51,000 words; a summary post that lists the entries is available for ready reference: Summary post for the Jan 2011 dementia/ caregiving blogfest
Swapna Kishore is a regular blogger and her blog has over 180 entries overall, most of them on dementia/ caregiving. The blog has menu options and links in the sidebar for ease of access. Check out the full blog, http://swapnawrites.wordpress.com. You can also follow the blog using email subscription.
One year of caregiving for a bed-ridden patient
In this blog entry, Swapna Kishore describes one year of caregiving for her mother, now a late-stage dementia patient. Many people dread the idea of looking after a patient once the patient is completely bed-ridden and uncommunicative; in this account, the caregiver shares both the challenges and the joys experienced during the care, and also describes how her mother deteriorated from the state where she was still walking to the point when she stopped walking.
From the entry:
A few years ago, I had assumed that anyone who was bed-ridden would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have ever seen her before (even when she was young). Especially after all the frustration and agitation she showed because of the inabilities caused by dementia, this is so much pleasanter to see.
Read the full entry here: One year of care for a bedridden mother with dementia.
Living with Appa
Uma Iyer is a freelance consultant with IBNLive. Her father-in-law suffers from Alzheimer’s. In this post at IBN Live, Uma describes how she and her family have tried to understand the diagnosis and come to terms with it. In this post, she describes the problems they face and the challenges of difficult dementia behaviour, and the need for caregivers to reinvent themselves ever so often. She talks of the help she received from a member of the Alzheimer’s Society of India, Delhi Chapter, who spoke from his heart and shared his experiences. Read her entry here.
Progressive Supranuclear Palsy, a rare cause of dementia: a daughter explains
Progressive Supranuclear Palsy or PSP, is a neurodegenerative brain disease that has no known cause, treatment or cure. When her father got PSP, the doctors were unable to diagnose it, and as a result the family did not understand why their loved one was changing so much, and did not know how much he must have been suffering. Read this sensitive portrayal by the daughter here: World Rare Disease Day and My Lessons From it All.
A carer’s story: My mother my child
In a touching, poetic essay, a carer shares the joys and sorrows of caregiving a mother who progresses through the various stages of dementia till she finally passed away. The carer says:
She was my third child, seventy -two years old, silver topped and almost wrinkle free. She was also my MOTHER.
The carer takes us through the journey of ten years as the mother deteriorates to a point when this elderly lady wanders because she wants to be taken home to mummy, and then finally slips into a peaceful state and gives up her desire to live. Read this touching essay here.
Visiting a dementia patient
A young girl describes her conversation with a patient of early-onset dementia, where the patient, living in a strange world that mixes facts and fiction and is placed in the past, talks to her affectionately about poetry as the visitor listens and validates his feelings. For those of us who wonder how we can ever spend time with someone who doesn’t remember, this is a gentle reminder that one can listen with one’s heart, and that there are truths other than historical facts. Read the story here.
Home Care or Institutionalization decisions, and caregiver guilt
When we realise that we cannot continue home care for someone we love, we may have to decide to move the patient to institutionalised care, and there is often a lot of guilt involved in this decision. Sometimes, we need to move away for our job or studies. Read a narration where a young man describes the conflicts and anger and guilt as his family members differed over some hard decisions taken for a patient with dementia whom they could no longer handle at home. Click here for the story.
Supporting a caregiver: My buddy Vana
A caregiver, thrust into caregiving when still a student, describes how she was devastated by her mother’s early-onset Alzheimer’s, and the stress and isolation she felt. She describes how some select, close friends and their mothers helped her and supported her through those tough times. Read this to understand how difficult it is for caregivers to cope with the situation, and how others around them can help. Click here for the story.
Shraddha: Giving Up Exisiting To Care
This moving narration describes how a young girl, a student, decides to give up her studies to take care of her mother, an early-onset Alzheimer’s patient. Shraddha was in her final year at college, just a few months away from her examinations and degree, when her mother’s wandering becomes alarming and the family has no way of handling it except wanting Shraddha to be available for care all the time. Shraddha talks of her decision to give up her studies, and the way the family receives it. Read the story here.
