Unforgettable

After Mom died, I began drafting a white paper — working title “Better 4 Beverly” — to detail and communicate my family’s experience in assisting both parents through their dementia journeys. I’m writing it for health care professionals, for government representatives, and for other families who might benefit from the lessons we learned.

Every time I sit down to write the part about how alone we felt in our struggles, I feel the anger rising again. Why, after being law-abiding, community-minded tax-paying citizens for over 80 years, were my parents forsaken at the end of their lives? Why was it such an enormous struggle to get them any help, let alone the dementia-friendly kind that we so desperately needed? At one point, about to crash and burn, I was offered a free consultation with a psychiatrist. I didn’t want an anti-depressant (which my doctor suggested), I wanted a way to cope with my anger and my frustration. His advice? To lower my expectations. To stop expecting so much from people.

Really? Expect less from the world?

Maybe that’s what got us here in the first place, was my reflective thinking on that bit of advice.

I know that we don’t live in a perfect world. I know that most of us are trying our best. I know that change takes time, that it’s important to know all points of view before charging ahead, and I know that we are all comfortable in the bubble we’ve been living in, and that we don’t necessarily want to do the work required to make change. I know all of these things, conceptually.

But that doesn’t help the 30+ seniors who died horrible deaths in Montreal’s CHSLD Herron, a privately-run long-term care facility that quickly became the canary in the coalmine. In other words, it took a global pandemic to reveal just how sordid the situation already was, long before COVID-19 and long before this incident.

I began my investigation of long-term care facilities five years ago, physically visiting the options in my parents’ area and doing a lot of research online to assess what we might be looking for, in terms of dementia care. Most of the homes were either unreasonably expensive and designed more for independent living (complete with libraries, restaurants, indoor pools and little movie theatres) or they were dismal, smelly places with people moaning and screaming or shouting randomly, stressed workers rushing to and fro. I made a point of meeting with the director of one of the publicly-funded homes that has the best reputation for quality care. The director was an amazing person; the residence was just another residence. They are all pretty much the same, from what I learned, with a few incrementally better than the rest.

But any sane person could have seen this disaster coming – if I could see it from the fringes, then it must have been glaringly obvious to the people working in the system. Is there some unwritten rule that we don’t talk about these things in polite society? Or is everyone just so worn out that they don’t have the energy to tackle it?

Secrets kill people, that’s no secret. 

My friend Christine is in a publicly-funded long-term care residence in Montreal. One of the staff alerted her to the fact that a resident had tested positive, but told her not to mention it to anyone because she could lose her job. It was another week before my friend could confirm that the residence was, indeed, infected. Again, she was told not to mention it to anyone (including her family).

Thankfully, she has since been moved out of the residence for safe-keeping, after the virus spread and became unmanageable. Too bad, though, and too late for the 15 patients who tested positive; had their families known weeks earlier, they, too, might have been moved to safer places.

I hope this uproar never becomes a whisper again. Let’s keep talking about ways to make dementia care better, let’s keep sharing our stories. And let’s encourage positive solutions; ones that value our workers better, ones that ensure our seniors are respected and treated with dignity and compassion. Is that expecting too much?

Stay safe, everyone.