Two years down the line: Care for a bedridden mother with dementia

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.

I have described this stage of my mother’s dementia in previous posts (you can read the entries chronologically is you check out the page here, and read from bottom up (sorry, but that’s the way blogs work). The milestones are covered in A new phase of caregiving: a bedridden mother, Ramblings on love, hate, and a life worth living, A year later: One year of care for a bedridden mother, Enjoying fun time with my mother, Keeping her happy: Challenges of late-stage dementia care,and Some days are good.

But as we complete two years, it is perhaps time for another update, even though nothing drastic has happened.

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.

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emotions and control

I recently heard an interesting phrase in the context of dementia: emotional incontinence. It seemed a very colorful way to describe uncontrollable outbursts of pathological laughing or crying, and is a distinct medical condition,  the proper name being: “pseudobulbar affect”; the disorder occurs in patients with brain injury caused by many types of neurological disease, including stroke, tumors, and neurodegenerative disorders.

But of course, my interest was related to things not quite that medical.

The word incontinence is quite loaded for a caregiver, who often finds herself balancing between not breathing, and between sniffing hard enough to figure where exactly the source of that smell is. You enter a room, get that whiff that we have been conditioned in childhood to find repugnant, and we have to solve it. (I sometimes wonder why humans take such pains to find repulsive the body odors that other animals use to mark territories and distinguish between strangers and clan members 🙂
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