Monday, 12 October 2020

Patient experience during COVID-19

 Last week, I had the honour of being chosen to report to the Tenth Annual Geriatric Training Program about my experiences as a resident of a retirement home during the first wave of the coronavirus.  The sponsors of the program, Hamilton Health Sciences, McMaster University Health Sciences, and the Department of Geriatric Medicine, handpicked experts in various fields of geriatric healthcare.  I was the lone non-expert in the two day program.  I still think that I had a fair amount to tell them, as I was speaking from the inside so to speak.

As a group, I think there are two major's experiences which were uniform to most residents of retirement homes.  The first is fear; the second is what I would call "enhanced loneliness".

I live in what you might call a medium-sized retirement residence, supporting the lives of slightly more than 100 people.  Our building shares a city block with the Hamilton federal building at Bay and Market streets in downtown Hamilton.  For those who don't know it, I am eighty-three years old and have spent practically all of the last eight years in a motorized wheelchair.  One of the reasons I chose this residence has to do with being able to enjoy the pleasures of living in downtown Hamilton.

I am one of the younger people here and I think I still have most of my wits about me but there were times when I found things confusing.  The average age here is over ninety and many people have chosen to concentrate their lives on routine, memories, and family.  They don't pay a lot of attention to news of an approaching coronavirus.  Thus,starting March 15th, when we were locked down, and all the staff were wearing facemasks, many of the residents chose to ignore all the rules, play cards together, and ignore any sense of social distancing.

Fear did set in, however, starting, in my case, with an awareness of a lack of personal protective equipment.  You will remember that in Ontario we were very short of ventilators.  I received a telephone call from my doctor asking me what I would be prepared to have happen if I had to go to the hospital and there was only one ventilator available for myself and a needy patient half my age.  Would I be prepared to give up my ventilator even if it meant near certain death?

What a classic question.!  You might be asked this question in a make-believe scenario, but this was real life.  I am afraid I waffled.  She may have expected more grace from me but I indicated that, at eighty-two, I wasn't prepared to die yet.  Six months later, I am now eighty-three and I still think that I have a lot of my life ahead of me.  Mind you, when I think about it I am glad that I would have had my say should I have been unable to express myself should the incident have occurred.  A few weeks ago, I read in the New York Times, that in Belgium, at relatively wealthy country, the hospitals filled up during the first wave and seniors who needed hospital care were being rejected.  Caregivers were told to administer morphine and let death occur.

Two thirds of all coronavirus deaths in Belgium during the first wave occurred in nursing homes.  I am not suggesting that that sort of protocol existed in Ontario, but during the first wave, 1858 out of 2827 deaths which occurred in Ontario were people living in long-term care or retirement homes.  That is almost exactly 2/3, I wonder why.  Of course, the reason here is the long-standing lack of decent standards which successive governments have applied to long-term care facilities in particular, but also to retirement homes.

When I think about this, my fear turns to anger.  I paid taxes all my life without complaint and I did so in full expectation that the state would be there for me when I needed it.  We have understood the demographics created by the baby-boom for more than seventy years and yet the whole of western society seems to have made very little preparation to care for the elderly.

When the lockdown occurred, on March 15th, and for three months thereafter, we were not allowed to leave the premises even to touch the sidewalk.  One resident who did so by going up to the mailbox, was confined to his room for fourteen days.  The recreation and activities manager was given a leave of absence.  All activities ceased.  No exercise programs; no happy hour; no beauty parlour; no movies; no assistance with nail care; no pastor to lead Bible study; no little dog for us to pat on Saturday mornings.  The baby chicks who had joined us as eggs so that we could watch them poke their heads through suddenly disappeared

When a neighbouring retirement home just a few blocks away started to have patients die and a great number of staff and patients test positive for COVID-19 a decision was made not to let anybody who had been near their building into our building.  Two of my favourite PSW caregivers had no alternative but to choose to work elsewhere.  Eventually, the province passed the regulation making that mandatory.  I have not seen them since.

I am a great advocate for PSW's and I am very grateful for the help they give me.  In retrospect, however, I am very grateful for the fact that extra care was taken by my retirement residence to make sure that I was safe.

My caregivers are provided by the local LHIN and they are extremely good.  I find it strange, however, that there is no requirement by the LHIN for them to ever be tested for COVID-19.  I inquired and was told that this is in accordance with provincial directives.  Some of my PSW's get tested on their own while others point out that they move between clients on buses and, with the long wait for results, testing would be purposeless.

I have had two occasions to be tested.  The first occurred in May when I happened to indicate to PSW employed by the residence that I had a stomachache.  The second occurred in July when I was making preparations to visit my sister and brother-in-law, both of whom are octogenarians.  In each situation I waited five days or the results.

I mentioned earlier that the second great concern here is what I would call enhanced loneliness.  I am convinced that loneliness is a very serious matter in situations like this.  The evidence being taken by the Ontario Long-Term Care COVID-19 Commission seems to endorse this conclusion.

I am fortunate in that I have a lot of friends from Kitchener Waterloo and family from Toronto and Eastern Ontario who visit me a lot.  That's all stopped in March.  I think that most of the people here who have family and friends in Hamilton suffered more than I did.  Further, I was very lucky.  On March 15th, which I consider to be shut down day, my niece, Elspeth McCulloch, set up a series of nightly Zoom meetings to occur each evening at 7.30 pm for family and our friends.  The result is that I got to see many members of my family more often than usual.

How did the others who were not so fortunate deal with loneliness?  I have asked them and I have asked PSW's who work with them..  I don't think many of them dealt with it very well.  I heard stories of severe depression and I was told that a large number of them actually died during the lockdown.  As this information was antidotal I spoke with the chief administrator here about it.  She confirmed to me that depression had become a very serious matter and that, for a number of reasons, there was a spike in the number of deaths, The plan, at the moment, is to slowly reopen the dining room and try to entice some people, so depressed and fearful that they won't leave the rooms, to come to the dining room in order to eat.(The dining room has been closed since the end of March and we have had our meals brought to us in our rooms.) Deaths of this nature cannot be directly attributed to COVID-19,

All my life I have noted that if I celebrate New Year's Eve in a wild party fashion I have a relatively quiet year and vice a versa. I started this year in a coma.  My health is been very good since January 12th.  The lockdown that I have been describing ended on June 18th The summer was very enjoyable, especially the trip I took to the home of my sister and brother-in-law, Carolyn and Gordon McCulloch, at the end of July.  Lockdown is now beginning again and the best thing I have to look forward to is the hope that I will get to make that trip again next summer.

In the meantime, winter looks to be bleak.  My neighbour across the hall, Stony, was unable to celebrate his ninety-ninth birthday on March 29th.  We are looking forward to doing something special in 2021 by celebrating his 100th.

I do believe that, since I spent so much time in my room, using the computer, talking on the telephone and reading, my life may have become a bit contracted.  Much of the world outside this building now strikes me as being irrelevant and not worth seeking out.  I suspect that other people here at the same sense.  The whole world is facing a new reality.


  1. David, that's a remarkable essay. You capture the difficult, even terrifying, world of the long-term care and retirement better than anyone else has done. I don't know why Canadian governments have been so irresponsible in terms of the homes. As you indicate, the challenge was clear but it was not handled well. Now it appears in the second wave that the homes once again the front line. Thanks for this compelling essay. John