SHIFT: COVID showed us we have reason to be very afraid of ending up in long-term care

To age at home is the new financial goal for many Canadians after the pandemic revealed the horrendous conditions in many long-term care and retirement facilities.

Lisa Machado 9 minute read March 13, 2022
long-term care deaths

CP-Web. A man looks out the window at the Camilla Care Community centre overlooking crosses marking the deaths of multiple people that occured during the COVID-19 pandemic in Mississauga, Ont., on Tuesday, May 26, 2020. THE CANADIAN PRESS/Nathan Denette ORG XMIT: JFJ501

When the living situation in many long-term care and retirement homes in Canada made the news early in the COVID pandemic, it got a lot of us thinking about what we hope our elder years will look like.

Or perhaps more accurately, what we hope they don’t look like.

Images of stretchers with bodies covered with blankets being wheeled out of homes and loved ones weeping on the sidewalks outside are just two of the memories that mark the devastation of COVID-19. And when the Canadian Institute for Health Information (CIHI) published a report later, exploring the impact of the pandemic on LTC and retirement homes, it found that they were “disproportionately affected” by infections, outbreaks and deaths. In fact, according to the findings, between March 1, 2020, and February 15, 2021, the number of deaths at care homes across Canada represented more than two-thirds of this country’s overall COVID-19 deaths. Staggering.

The CIHI report found that during the pandemic, residents had less visits with doctors, they weren’t sent to hospital as often for chronic conditions, and that many homes were grossly understaffed — this, discovered after the 1,500 members of the Canadian Armed Forces who were deployed to help reported insufficient medical supplies and training, a lack of personal protective equipment and residents being denied food or not being fed properly.

While many Canadians looked on in disbelief, it wasn’t a big surprise for the thousands of families with loved ones in these places. In fact, they must have breathed a collective exhausted, but angry, sigh of relief that finally, some attention was being paid to the heartbreaking, sloppy and unacceptable way we have been taking care of those in LTC and retirement homes — arguably one of the most vulnerable communities in our society. After all, these families already knew that residents were often left to sleep in their wheelchairs for hours in a hallway, that they sometimes didn’t always have a bath, and diapers not changed? Yup, they knew about that too.

I also knew.

When my father was in long-term care, there were so many things I really hated about it. Hate is a strong word, but it’s the only way I can describe the nauseating feeling that sat in the pit of my stomach every time I saw evidence of a long-ignored system in which people were robbed of their dignity and treated with a complete lack of empathy and respect.

Like when I arrived late to feed my dad lunch, only to find a nurse or personal support worker jamming a spoon of puréed-whatever in between his closed lips and letting it drip down his chin onto his shirt because they were on the clock in terms of how long they could spend feeding each resident. Or the refusal of the physiotherapist (‘I have no time!’ he’d mutter when I poked my head into his office) to help my dad out of his wheelchair for a few minutes each day so he could stand, keep his leg muscles strong and avoid sores from sitting too long.

And then there was the stress of knowing that if one day my mom or I weren’t able to get to the home to check on him, my dad would never be taken outside into the garden to sit in the sunshine, which he loved doing. Instead, he would be left in his room to watch cartoons on TV all day — or sometimes just a blank screen — or parked in his wheelchair in the crowded common room to stare out of a window.

It’s not like we didn’t ask nicely

And it’s not like we didn’t ask nicely, complain loudly, or file grievances — it didn’t matter, we learned quickly that LTC is a behemoth and taking it on is not for the faint of heart.

So months into the pandemic, when polls showed that many Canadians were rearranging their financial plans out of fear of ending up in a LTC or retirement home, I wasn’t surprised.

Data gathered from more than 3,000 people in Ontario and Quebec last November between the ages of 50 and 69 years old found that, in light of the state of care laid bare by the pandemic, most — 72 per cent — hoped to avoid nursing homes, 25 per cent planned to save more money for their elder years in the hope of being able to afford home care instead and 70 per cent supported a tax policy that would subsidize the costs of home care.

grey hallway with empty wheelchair

Many families didn’t need the army to tell them that their loved ones were often left to sleep in their wheelchairs for hours in a hallway. GETTY

It got me thinking about how realistic it is to hope that some of us could travel toward the end of our lives avoiding LTC, and, instead, hop on the preferred home care route if necessary. And well, based on some rough calculations, for many of us, professional care in our homes is not much more than a wrinkled pipe dream.

According to a cost calculator on the Guardian Home Care Toronto website, if I required live-in care from a personal support worker who would help with things like bathing, dressing, hygiene, and toileting, it could cost roughly between $6,000 and $15,000 each month, before tax. (Interestingly, another website I came across based the monthly cost of a live-in caregiver on whether or not they were able to get six to eight hours of sleep, waking no more than twice.)

These estimations are based on a scenario that I fear — that I live out my days relying solely on the help of someone else. Ideally, I aspire to be a spring chicken — that lively grey-haired woman that every neighbourhood has, you know, the one with pink hair, an overflowing swear jar and the energy of a 30-year-old. But who am I kidding, with my genes, I am on track to have at least a few health issues that will likely require some support, which — according to the site — will cost $33.95 per hour.

And if I needed a nurse, say, to administer injections or medication — assuming this would be required for three hours at various points of the day, seven days each week, it would cost $1,371 each month. That’s over and above everyday living costs like food, rent or mortgage payments, and other bills.

Forget the inheritance, kids.

Certainly, these amounts would be difficult for many Canadians to afford. (It’s worth mentioning that while there is publicly-funded home care available in most provinces, the wait times may be long and you need to meet certain criteria.)

Long-term care is not a bargain

And even if you resigned yourself to LTC, it’s not a bargain either.  According to the government of Ontario, a full-time stay in a LTC residence can range from $2,000 to $2,700 per month, depending on things like whether or not your room is private, and the amenities offered at the facility. Other websites had this fee reaching as high as $5,000 per month. Yikes.

And even though most provinces offer some sort of subsidy based on income, it still brings us back to where we started: none of us want to end up in a LTC or retirement home.

The good news is that there is potential for improvement. In February, the Canadian Standards Association (CSA) called for extensive changes — 338 to be exact — to the way our LTC homes operate, including private bathrooms for residents, plans for staffing shortages as well as rules for bathing, feeding, and — duh — how often a resident is taken outside. It’s about time.

And though we won’t know if and when any of the suggested changes will be adapted until the fall, there’s one thing we can start right now: valuing our senior communities, protecting the vulnerable who don’t have a voice to advocate for themselves and engaging the families of those who live in these homes.

All of this makes me think of a good friend who a few years ago made the difficult decision to move his wife who has Alzheimer’s disease into LTC. This, after years of hiring various personal support workers to care for her during the day when he went out to get groceries, and overnight when she began to wander. Fortunately, he’s found a pretty solid facility with staff that seem to genuinely care about residents and their families. Still, he pays for a caregiver to spend time with his wife when he’s not there, which alleviated a lot of worry during the worst of the pandemic when he wasn’t allowed to visit. The caregiver also ensures she has her needs met — clothes that are clean, diapers that are changed, hair that’s combed — and provides a level of oversight that ensures she is protected from the very things many of us fear about LTC.

There is a cost though — hundreds of thousands, potentially. It has meant he has to sell his beloved home of 40 years and move to an apartment that won’t allow him to bring along his two much-loved dogs.

“Over all these years, I have never felt that I have sacrificed,” he said with a sigh, as he loaded his car with boxes of old encyclopedias destined for a local thrift store. “Now, I am sacrificing.”

But what’s the alternative?

My dad passed away three years ago, and if I concentrate hard enough, I can still smell the stomach-churning odour of greasy hair, stale bread and vomit mixed with cleaning products. I know we did the best we could for him — my mom advocated tirelessly to improve his care and she spent more time with him than she did at her own house, mostly because she loved him, but also because she was afraid of how he would be treated if she wasn’t there. That’s no way to live — not for her, and certainly not for him.

All we can hope for now is giant leaps forward towards not only closing the devastating gaps in the ways LTC and retirement homes operate, but also in reimagining elder care and holding those accountable to standards that are empathetic, respectful and that ensure the dignity of residents. Maybe we can even get to the point where hiring extra help, and paying through the nose for it, to ensure a loved one is looked after appropriately is considered unnecessary — silly, even. How about good care that’s affordable and accessible for all?

It’s long overdue.

Lisa Machado is the executive producer of Healthing. She can be reached at lmachado@postmedia.com.
This story originally appeared in the Healthing Weekender. Subscribe here.
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