Unforgettable

It may be a global world out there, but here in Quebec, Canada, it continues to be an embarrassingly small one, where people argue over language ad nauseum. It’s enough to make you sick. But wait! If you are sick (and even if the law likes to pretend that you have rights), it doesn’t mean you are going to get a health care professional who speaks your language. Which is a crying shame, because when you’re not feeling your best, it’s really hard to focus on a foreign language.

One of our concerns in determining whether Mom and Dad would be better off at home or in a residence was language. Dad is French-speaking first and perfectly bilingual, although as his dementia progresses, he seems to favour French. This is normal, according to the research I’ve read. Mom is English, and while she could always converse in French, having a provider who spoke the same language was a real bonus.

In this province, though, unless you spring for private care, your only option is to get put on the list of dementia-care facilities in your own neighbourhood. You can’t pay taxes in one district and then avail yourself of the services in another. Even if the facilities in another area have shorter wait times. Even if the they have the English-speaking staff that is so important to your mother. And even if that facility is closer to family, ensuring more visits and easier access to loved ones. What a load of merde. Effectively, this makes it incredibly complicated to select a residence based on the quality of care your parents need.

An October, 2015 report in the Montreal Gazette painted a sad picture. Read it and weep. I’m aware that the Quebec government has allocated funds for home caregiving in 2017, and I’m thinking of getting involved…. if I have the time and energy. In the meantime, helping baby-boomers find residences for their parents has become a business. I backed away from one “free” consultant when she told me she was paid by the residences she represents. To me, that’s a definite conflict of interest.

“CHSLDs are reducing basic services such as hygiene, bed sores have become a rampant problem, clients are recklessly juggled around. The private system is trying to fill the gap… but is increasingly admitting users whose needs are too great for their facilities.”
– Raymonde Saint-Germain, Ombudsman, Quebec

And now Mom is struggling with aphasia: the inability to find words during conversation. It’s like the feeling we know of “having it right on the tip of your tongue”, as she tells me when she can. It’s important to know that aphasia is not reflective of your intelligence or capacity to think, it’s simply an inability to talk. Ultimately, you end up talking gibberish. People around you might mistakenly think that you’re as stupid as you sound…but that’s as far from the truth as can be. That’s like assuming a blind person can’t hear (which a lot of people do, strangely enough).

It has been a real challenge for her, as a woman who was brilliantly eloquent and is now constantly frustrated when she can’t express herself. Especially at a time when she really needs to, in terms of what she needs, what she can or can’t remember, and what she wants to convey.

So having English-speaking people around is no longer a bonus, it’s essential. This made the decision to provide in-home care easier (we were always leaning that way, anyway). Fortunately, the local caregiving service that we are using on a part-time basis has English-speaking gals. Mom’s general physician is English, and we found an English-speaking geriatrician, who administered the initial Alzheimer’s test in English, of course.

Dementia doesn’t translate well, either…
In the first few months, I found myself talking to French health care providers and telling them that my father had “la demence”, which is the technical translation for dementia. A few raised eyebrows and a couple of shocked reactions later, someone finally clued me in. Apparently, “la demence” in French is more accurately translated as “demented” in English. So I was telling people that my father was crazy. It’s basically an insult.

The good people at the Alzheimer’s Society of Laval counsel us to use the term Alzheimer’s instead of dementia, because there’s no acceptable translation for dementia. That really bugs me, because there’s a HUGE difference between a diagnosis of mild dementia and a diagnosis of Alzheimer’s. I don’t like telling people that my father has Alzheimer’s, because he doesn’t. Is it just another stigma that I’m resisting? Yes. Does my father care? No. I got over it.

In any world, and even without words, love is a language on its own. Hugs are bilingual. Caring people make an effort. And a lot can be communicated with a look.

“Love in its truest form has no language or words, it just has a 1,001 actions we all wish we could describe.”
– K. B. Emery