It Took A Pandemic

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. 

Quotes About Being Kind | Ellevate

 


7 thoughts on “It Took A Pandemic

  1. Thank you for the frank and honest evaluation of a subject that sorely needs more attention. No, I don’t believe that lowering expectations is the right path to change this situation, rather expectations should be raised.

    Liked by 1 person

  2. Thank you Lorrie for another great posting. It has taken a pandemic to expose the conditions in some LTC homes. We are very lucky here in our residence…….so far so good. They are taking good care to keep us safe and they could not do it without our PSW’s who are amazing and not paid enough. They obviously love their jobs cause we have been self isolated for almost 2 months and they keep showing up for work each morning and they are exhausted. Keep up the great writing, it was good to see your posting this morning. Take care and stay safe. 💕💕 Marilyn

    Sent from my iPad

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    Liked by 1 person

    1. So nice to hear from you, Marilyn. And gracious of you to mention your valiant PSWs, who are “not paid enough.” Hopefully this will change, with more pressure on government and private owners. Sending you virtual hugs, stay safe!

      Liked by 1 person

  3. Hi Lorrie, Lyne told me that you are enjoying your new home which makes me happy for you. As usual, your article was very interesting & informative to read. As for the Herron, so far Henry has survived the maltreatment & abuse & now he has Covid 19. which doesn’t, seem to be too bad. Unfortunately, I have not been able to visit him for 2 months which is very difficult. For the last 2 weeks I have been working with the police because they are doing a criminal investigation on the owners & staff & the Herron has been completely taken over by the government. What a change, the nurse phones me twice a week & the Dr. always keeps me posted. Before, no-one would ever answer my questions & the staff were very rude. I think the main reason most of the staff were fired was because no one reported what was going on & no one reached out to the police, minister of health or the government. The government had to obtain a Court Injunction in order to enter the Herron which took 6 days. This horrific happing has changed how the long term care homes are being run. Something had to give! Talk to you soon. Stay safe Carole

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    Liked by 1 person

    1. Carole, you’ve been on my mind so much the past few months! I will call soon to get an update on Henry. I can’t imagine what you are going through, and I hope you’re getting support from friends and family. Your story needs to be told, and I’m interested in how the police are going to handle this. Courage & love to you, we’ll speak soon.

      Liked by 1 person

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