Flowers for Canuckistan -- and my parents

Flowers for Canuckistan, and my parents  

Versions of this article were originally published in the Toronto Star and in the Kingston Whig-Standard.  

I hated to see my 83-year-old mother with a shiner. She died years ago, after a thirty-five year fight with Parkinson's disease. When she went, she couldn't speak, walk, feed herself or go to the bathroom for herself, and she had been unable to do these things independently for several years.

It was sometimes hard to tell what she was feeling, but in spite of it all, I know she kept her indomitable spirit. She had been a pioneer palliative care nurse at the Royal Victoria Hospital in Montreal, and helped establish one of the first units of that sort in Canada. She knew exactly what dying meant.

Years before, my parents, sister, wife and I had a night out at a well-known downtown restaurant with a family friend visiting from England. Mother was having trouble feeding herself and I began doing it for her. She chuckled with me at the insufferable, inevitable public indignity of it all. 

She died at home in my father's arms. For years, he spent two or three thousand dollars a month for the daily home care she needed, and wore himself out managing her caregivers. The agency directed them from its offices two hundred miles away, so they sometimes had trouble meeting the service appointments. Caregivers are generally poorly paid part timers, so turnover and absenteeism is extremely high.

Happily, Dad had just enough money to do it, and he was devoted to her, but he was in his late 80s. When caregivers didn’t show during the day, he had to do everything by himself. In the evenings, he would call me to help him. There’s a bit of lifting involved with getting someone who can’t walk and has little muscle strength into a wheelchair, into the bathroom and then back to bed. Ask any nurse.

There were nearly 500,000 elderly people in Canada back in 2006 with illnesses like Mom’s, one in 60 Canadians; twice as many women as men. Three quarters of the people in Ontario nursing homes are women.

Mom loved the poetry of Dylan Thomas - her favourite was, Do Not Go Gentle into That Good Night.

Depending on where you live, going gently may not be an option. When this article was first written, Ontario Long Term Care (LTC) residents received poorer care than Manitoba, Saskatchewan, South Dakota, Michigan, Maine, Sweden, Finland and the Netherlands; according to a study posted on the Ministry of Health and Long Term Care’s own website.

It’s a little better now, but acute care hospitals around Ontario remain full of people with chronic disease who simply have nowhere else to go. The Ministry declared a bed crisis at our local hospital 7 times in two years, back then. A bed crisis is declared when there are so many patients who can’t be discharged to a nursing home, that surgeries have to be cancelled and emergency patients are redirected. Some had to go a couple of hundred miles. At times, one in eight of our hospital’s patients should be in nursing homes.

As Mom’s health inexorably declined, my father was at his wits' end to continue caring for mother at home, by himself. We had finally agreed we should try Mom in a nursing home, where caregiver time amounted to 2-3 hours per day. That's pretty good, as these things go.

According to that study, Ontario’s overall average in healthcare facilities was 15 minutes per patient, per day of nursing time. This particular outfit had a caregiver-to-patient ratio of 1:8. This sounds alright, doesn’t it? But do the math – it means less than one hour of caregiver time per shift. Those institutional caregivers, almost all of them women, work very hard and very fast, for not very much money, although it is vastly better pay than they get working home care.

In practical terms, someone got Mom out of bed, changed her diaper, washed, dressed and breakfasted her in the morning; then they fed her at lunch and at supper and then came back to change her into her PJs. Then they brushed her teeth and hoisted her back into bed. Once or twice a week she got a bath.

In between caregiver visits, Mom might want to go to the bathroom. She had a teensy bit of dementia, so she got up sometimes for totally unfathomable reasons. Whenever she tried to stand up alone, she fell and hurt herself. I visited her almost every day, and she regularly had savage new bruises, cuts on her face or limbs, a broken finger, blood spattered on her clothes, a black eye. Not the institution's fault, really, they couldn't strap her to the chair or have a caregiver in her room 24 hours a day, but it drove us crazy - we couldn't be with her 24 hours a day, either.

When I wrote this piece, I worked full time. I have my own family. My sister was working full time, too, four hundred kilometers away. Mom’s family lived at the other end of the country. Dad spent hours and hours every day with Mother. He and I coordinated visits so that one family member was with her as much as possible. She was quite cross with him. We don't let criminals get banged around like that in custody.

Old age should burn and rave at close of day

Eventually, we figured out that if Dad paid somewhat more, he could get a full shift of caregiver time at home each day; caregiver-to-patient ratio, 1:1, and living at home, she had 24/7 attention. We brought her home again as soon as we could, and there, she died.

Since our society began mechanizing and urbanizing our working lives, our traditional way of taking care of elders - turn them over to the women of large, extended families - has vanished. If you don't need manual labour to earn your daily bread, you don't need a big family. Given a choice, many women don't want children, else birth rates would not be falling drastically in the west. Economists preach strenuously the many advantages of a mobile workforce. In fact, many people do apparently prefer to be interchangeable bits of a globalized, urban workplace, at least when they’re young. We’re not likely to be able to take our ailing parents around the world with us, though, as we chase the work.

Over a few generations, we have doubled lifetimes and we are creating far fewer children in the west. Now, we have older, old people, afflicted with illnesses that earlier generations never heard of, but their small, dispersed families can't take care of them. And women live longer than men. So, in Ontario, we all pay through the state for a basic level of elder warehousing in an institution, or about an hour and a half of daily homecare. However, anyone who needs more than an hour or two of daily help is on their own hook, either way.  And I’m sure it won’t surprise you that most ‘Volunteer’ family caregivers are wives and daughters (70%).

            The biggest problem is that women who nurtured their family at home instead of developing an outside career and investing for 35 years in a retirement fund, and who become disabled like my mother,are completely dependent on someone else to pay cash for the extra care they need. It could come through the state via taxes or privately, from a spouse or family.

But three or four thousand dollars a month is more than many can afford to pay for very long - it’s almost the entire income of an average family, after taxes. Now, if you or a dependent should happen to require real 24/7 care, you're looking at serious dollars - costs could easily rise to $10,000 a month or more. Our local hospital is now charging over $1,000 a day to any patient who refuses to leave, when there is a long-term care bed available. Better start saving now, kids!

Private insurance for this is available if you can afford it, but don't even think about insurance after the diagnosis is made. If it is your parent with Parkinson's, you can also kiss your own chance for LTC insurance good-bye.

We need to update and re-extend the civil definition of family, to cope with an urban economy that increasingly rewards only individual mobility and external careerism. Otherwise, it seems sickeningly obvious that it is going to be mostly elderly women who will be paying the hidden costs of greater economic efficiency - in cash, or in suffering. If so, unlike what that old cigarette ad said, women may not have come so very far, after all, eh, baby?

Sophisticated western societies have rendered the ancient, extended rural family obsolete. We need to improve public policy in this field. Perhaps a new definition based on citizenship has to replace it.

  Rage, rage against the dying of the light. 

Author’s note.

My father moved in with us for two years. Then his doctor decided that he had urgently to go into a nursing home. The choice was, take the first available placement, 25 miles away, or be struck from the waiting list for six months. One blizzard-y January night, I moved him out there into his shared room, feeling very much like I was setting him on an ice floe in the Arctic. The first night, he got up to go to the bathroom and fell, bruising his leg so severely they admitted him to the emergency department at the community hospital. Receiving that phone call in the middle of that night was ... not pleasant. The painful swelling in his thigh never completely subsided. Following several months in “exile” he made it into the institution that he wanted in the city. After a few more minor strokes, he died there, in the summer of 2003.

Some say living longer is a great thing, but it is a long, tough row to hoe if you or a loved one has a chronic, debilitating disease. Even if you have a pension and savings that pay for something more than basic care. Unfortunately, many companies are now trashing employee pension plans, so that they can remain competitive globally.   

Of course, on the other hand, there is always the LoHI, the Legion of Helpful Individualists, these days known as Libertarians, or the Alt-Right. Whatever they call themselves,the LoHI vehemently insist that allowing the state to extort taxes from them to support other people’s problems is repugnant, immoral and (OMG) vaguely communist. The LoHI is working very hard to protect the morals of our society from further decay. Billionaires like Trump are charter members, even though he, unlike Oprah Winfrey, was born to a billionaire father. I do hope they also insist on picking the right numbers in their own health and economic lotteries, for their own, their spouses’ and their daughters’ and sons’ sakes. Never mind the rest of us. We don’t count.