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).
Read the full post here

Questions people ask, and the invisibility of problems and solutions related to the twilight years of helplessness

So okay, this bedridden care challenge stuff continues to be top of the mind for me. In addition to recalling a lot of related conversations I’ve had with others around it, I also got to chat with a friend currently caring for a bedridden parent. We exchanged woes and anecdotes. At one point, when talking of how little people around us understood about what was involved, we both burst out laughing. Hysterical laughter, unfortunately.

I must hasten to add that, before I was plunged into the bedridden caregiver situation myself (for a father with a hip fracture, and well over a decade ago), I’d behaved as if bedridden persons and persons who care for them were a category of persons I had to look through. Reason? I had no clue about what that sort of life involved (being bedridden, or caring for someone who is). I had more discomfort than curiosity. And I totally lacked the skill of conversing with family members involved in such care. Should one enquire after the patient, was that polite, or was it politer to pretend no such entity existed? Should I behave as if the caregiver was living a normal life, and discuss TV serials, or should I be oozing with sympathy, or asking for descriptions? What was acceptable, what was normal in such interactions? I found it far simpler, instead, to avoid the caregiver.

Again, it was not as if I thought I’d never become a caregiver for an elderly bedridden person. Nor did I think I would become a caregiver. Basically, I just didn’t think. Didn’t want to, didn’t need to. There are many ways to walk down corridors to avoid people.

Which, possibly, is why when I first got plunged into such care I found myself clueless. I suspect I’m not the only one thus caught unawares.

Now that I’m on the other side, I am not particularly surprised when people look embarrassed when they learn that I’m a caregiver for a bedridden person. Nor am I surprised when they seem clueless…

There is, of course, a commonality in the questions people ask. I’m sharing some below. 
Read the full post here