The caregiver learning curve

Many persons (who understand dementia) advise caregivers to be calm and loving and to never argue with patients. It is good advice, but these advisors then expect the listening caregivers to see the wisdom of the advice and change immediately. They forget that their suggestions require the caregiver to change habits built across years, and also involves the caregiver going through a very hurtful emotional acceptance about a family member who now has dementia.

Some habits are required to cope with the situations and people around us, and are deeply ingrained in us.

Suppose I go to a shop and buy something, and after I have paid, the shopkeeper demands money again. Will I opt for humor, distraction, cajoling, agreeing with him, and paying again? Or will I explain and then (if that does not work) argue?

Suppose I have spent three hours cooking an elaborate dessert for my kid, and the kid has consumed it all. Then the kid claims she never got the dessert, is hungry, and has been starved. Will I agree that yes, I am mistaken? Will I argue? Will I feel no annoyance or frustration or anger? Then the kid goes and tells the neighbors the same thing, and they believe the kid. What will I do?

Or consider this. Suppose, two years ago, a relative visited us and while living with us suffered an infection serious enough to require hospitalization. As I am sitting with my husband and talking of a neighbor who has suffered the same type of infection, my husband claims he has never heard of such a disease. Will I mention the two-year-old episode or not? Okay, so I do. Now he claims there was no such visit, no such relative, no such hospitalization. Will I say, Of course, of course, you are right my dear, would you like some chamomile tea? Or will I start convincing him, giving cues, arguing, maybe fishing out an old diary as proof? Or even go to Wikipedia to show the listed symptoms to convince him I am right…

What I am say is that arguing, convincing, proving one’s point, and making sure others accept our memories as “the facts” is something most of us do all the time. Life would be extremely difficult if we did not do so. Not all of us sit cross-legged in the Himalayas.

These habits misfire when talking to dementia patients, but we still need them in other spheres of our life, as we have been doing to deal with stuff right from childhood.

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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).
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Adventures in Hindi Part 1: A mother-tongue fading behind a veil

For the past few months, I’ve found myself exploring language, specifically Hindi, in an office-chair adventure. What started me off were some stray comments and even more stray thoughts, and then the subject grew like Frankenstein’s creation as I obsessed with how Hindi is (or is not yet) used by various people on the Internet, in life, and so on. I hit blocks repeatedly as I couldn’t locate enough on the topic to satiate my craving for knowledge.

This post is the first post of a four-post entry, and while this series describe my “adventures” with Hindi, I suspect that my experiences would hold good other Indian languages.

But before I start, a warning. I’m not someone into culture and language and preserving stuff like that. To me, culture and language evolve with people and times, and while there is surely merit in preserving literature and nuances of less-spoken languages, I’m not involved in that. My concern with language–any language–is only to the extent that one person can speak or write it and another understand or read it.

What got me into this avenue of exploration was some volunteer work, culminating in an incident that made me feel I was a character in a comic strip, and the joke was on me. And a desire to break out of that comic strip.

Some background first.

Hindi is my mother tongue, the language my mother spoke from her childhood and also studied in till she switched over to English in college. But Hindi was not my first language; my mother wanted me to be fluent in English and pointed out that I’d anyway pick up Hindi from people around me, so why not give me a good foundation in English instead?

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