Update on my bedridden mother

It’s been a while since I wrote about my mother, and that is because nothing much has changed. People I meet often ask me for updates, “How’s your mother?” and my answer has been the same for the last two years, “She’s stable, okay, but slowly deteriorating.”

Here is the status update. She is still alive. She is still bedridden. (No miraculous reversal has taken place). She talks maybe, a couple of words every week or so, nods or shakes her head sometimes, and the rest of our understanding of her needs and wants is essentially guesswork or our watching for the miniscule shrinking or relaxing of her muscles.

Blood test reports show her health as good. Her hemoglobin count would be the envy of many. Her skin is fragile but smooth and soft for most part (substantially smoother and softer than mine, but I am not asking to swap places). She sleeps most of the time. Once a week or so, she nods when I ask her whether I should talk or tell her a story, but I am barely past the introductory paragraph of the story and she’s nodded off. No, I am not that bad a story teller. I am not boring her to sleep. I think all voices to her are lullabies 🙂

Swallowing is still a problem for her. Mealtimes are typically 45 minutes to an hour, every gulp a challenge for her, and also for the person feeding, because we have to know whether she swallowed the first mouthfull of food before we pour in the next mouthful (otherwise her mouth gets overfull and she coughs horribly because the food goes the wrong way).

There are many places one reads tips on care for patients, places where they talk of exactly how thick food should be, and at what angle it should be fed. These have helped, but my mother is her own person. She has probably not read the books that say that patients find thicker foods easier to swallow, because the moment her food is even slightly thicker than juice consistency, she spits it out (right at the face and hands of the person feeding her). Maybe thicker food is easier to swallow, but she is not willing to give it a try. Over these years we have tuned our care to what seems to work for her, and sometimes it tallies with what books say, and sometimes it does not. We have become experts at watching her throat muscles. All her muscles, every part of her body, everything is a clue about what she may be wanting or feeling, because she says nothing. We have experimented with recipes to find the few that seem to suit her–stuff she eats without making a face, and which does not seem to cause her stomach any problems. We have reached a workable (for now) formula of how much to feed her, what to feed, and when…

Another caregiving challenge is how to keep her warm enough (she does not tell whether she is feeling warm or cold). Again. it’s calculated guesswork.

In case it is not obvious by the description above, my mother is completely dependent for everything, unable (or unwilling) to communicate most of the time, and all her needs are met by guesswork. As she is bedridden, a lot of care is required to keep her clean and also free of bedsores. It is hard, physical work, and I’ve described it in earlier entries.(see this entry: All in a day: what care for a bedridden mother involves)

The most difficult part now is finding times and ways to stay emotionally connected; moments of connection are really few and far between, often absent for days. This is an aspect that I don’t see covered in the dementia care books and caregiver manuals, and I suspect it is because most such books and manuals focus on the physical aspect, and are for countries where late stage care is typically in institutions. And yet I have heard some stories of similar drastically reduced emotional connection from some other caregivers whose loved ones survived to reach this stage (many patients die before this stage).

Most people who talk of caregiving talk of spending “quality time” with the person, and till a while ago, even over a year after she was bedridden and totally dependent, my mother and I would enjoy story-telling times (see this entry from last year: Enjoying fun time with my mother). Her being bedridden and unable to talk did not detract from this activity. But things are different now, and it is obvious she would rather sleep. She is so busy sleeping that one holds her hand for a few minutes, but then it seems intrusive and one gives up. It is a sort of weaning away, I guess. It takes a lot of getting used to, her slow moving away and disinterest.

Yet there are days (around once every three weeks) when I glimpse the person of old. Small glimpses. Like this day around two weeks ago when I asked her whether she wanted to talk or rest. I asked, aap aaram karna chahtee hain kya? and she opened her eyes and looked right into mine and mumbled something that sounded like, “aaram haraam hai” or perhaps “aaram hee aaram hai“, both perfectly valid social responses 🙂

Days like that, incidents like that make it all the more difficult for people around her to take the week-long silences that precede and follow.

I know many people think advanced stage dementia patients are like children because they are dependent like children, but being physically dependent does not make someone a child again. My mother, from what I can see, is an adult forced into a different style of existence because of lost physical abilities and terrible gaps in memories and language and other problems caused by physical damages inside the brain. Calling her a child would be insulting and dismissive of her situation and problems. I have seen the way some people talk to uncommunicative bedridden patients, and they are often condescending and almost disrespectful, resorting to either ignoring the person and talking as if she is not there, or using the sort of baby-talk people think children like. Yet none of my mother’s responses have ever been as if they were from the framework of a yet-to-mature child, and just because she needs to be cleaned and fed does not mean she is a child again. I feel at least part of her old spark remains, physically unable to work past a whole bunch of tangled neurons or shrunken, broken pathways, whatever.

So yeah, whatever. This is where she is now. Stable. Slowly getting sleepier, weaker, less interested in us, lost in herself. But healthy enough, except for her dementia.

Posts referred to above:

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care in this set of pages: https://swapnawrites.wordpress.com/about-contact/

4 Responses to Update on my bedridden mother

  1. Lalitha says:

    Dear Swapna

    Wish you, Rajesh and Vipul a very happy new year. I pray to God for your cheer and health. It is not easy to maintain the cheer given the circumstances that you are combating with for the past three years.

    Thank you for letting us know about mother’s present state of health.

    Uncle joins me in conveying his love and best wishes to you.

    aunty Lalitha Devarajan

  2. Vidya Mahesh says:

    I can totally see what is going on between you and your mother. This is the near identical story of my father, also in his eighties. The most interesting and luckiest part is that my mother is his caregiver and she vows by doing it all by herself.:)
    Others at home see him going through and we get in and out of the processes.

    Just that it seems very difficult for the spouse to accept that the children…

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