“The Indian Caregiver’s Corner” :
This section is made to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.
Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….
On Courtesy of Swapna Kishore :
"Two years down the line: Care for a bedridden mother with dementia"
(Extracts) SEPTEMBER 30, 2011
"My mother often told me stories when I was a child; while I have forgotten the details, some images linger on. Like the one of a delicate, sweet princess who was so loved and pampered that she never had to put her feet down on the floor.
It is almost two years now that my mother has been the princess now, bedridden as she is, and in late-stage dementia. We try and give her all possible comfort though she rarely utters a word to explain what she wants. I am not sure she feels pampered, though. For it is not by choice that she lies on bed and cannot even turn, nor is her silence her choice."...............
"Most volunteers and organizations who aim at supporting family caregivers of persons with dementia focus on early and mid-stage dementia. Challenges tackled are typically related to agitation, wandering, aggression, and other difficult behavior, and volunteers counsel caregivers on preventing or coping with these, or on enriching the life of patients through reminiscence therapy and activities and things like that. Caregiver manuals typically skimp over late-stage care, possibly because in many countries, patients in this stage are cared for in institutions.
Not so in India, where almost all care for all stages happens at home.
Back to my situation, and that of my mother. Life is at a crawl now. My mother sleeps bulk of the time. She wakes up for a minute or two when we change her diaper or underpad, and then she sleeps off again. She is woken up for mealtimes; she dozes off mid-meal, the soup still “pocketed” in her mouth, and she has to be prodded awake several times during a meal to make sure she swallows the food and opens her mouth for more. If she is too sleepy, we defer the meal or just give up half way.".............
"When she was still in mid-stage dementia, and I was coping with her moods swings, despondence and agitation, I met someone whose mother was bedridden. I said to her, it must be very difficult. Not at all, she said. Now it is very simple. We turn her every two hours. We wake her up twice a day to feed her and clean her. If she seems unwell, we call the doctor who lives down the road.
My mother is still slightly better than that stage, but I understand what that lady said. The difference between mid-stage care and late stage care is really huge.
Even our whole environment at home is different.
Games, labeled photo albums, her doll, her folder of grandson letters, all are shelved. The wheelchair gathers dust.
Now we are set up for a different kind of care.
Our apartment is full of paraphernalia like nebulizer and hospital bed and air bed and stacks of diapers and disposable underpads and what not. We have learnt bed making with draw sheets, giving sponge bath, using Listerine for oral hygiene. Stacks of pillows are used to make sure she doesn’t press knee bone against knee bone and stuff like that. Shelves are full of disposable gloves, cotton, surgical spirit, Betadine powder and lotion, talcum powder. There are monkey caps for the cold, kitchen mitts so she does not scratch herself. Buttons have been removed from sweaters so that they don’t press against her skin. One lives and learns every day. I discovered a few days ago that a torn plastic undersheet can be stitched using my home Singer sewing machine." ............
"Meanwhile, around us, there are others ageing yet active, and there are deaths. Many persons who knew her and were her peers are now no more. We are lucky she is still with us.
I just wish she knew it, too."
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