by john w warnock
An old friend called me a few weeks ago and suggested that I write a piece on what it is like to be in a long term care all during the pandemic shut down. I am 87 years old and in one of the long term care units for seniors run by the British Columbia Government. I am in this unit because I have ALS and I cannot live without full time support. Living with ALS and being in an institution is challenging enough at the best of times. This lockdown presents an added level of difficulty which has had a major impact on me. Issues that were already major challenges have now become insurmountable ; and that has had a cumulative, negative effect on my overall health and well being.
First of all, I am unable to either leave the building for necessary appointments or to have a doctor or other practitioners come into the building. My hearing is deteriorating and understanding the spoken word becomes even more difficult when virtually everyone I come in contact with, understandably, has a mask on. My hearing aids are provided by an organization which supports low income people. However, due to the lockdown, I am unable to get to their office to have these aids adjusted to suit my hearing needs, so I go without for the time being. I also need new glasses as it is very difficult for me to read small print. My daughter was seeking a specialist who had wheelchair accessibility, but that had to be postponed indefinitely.
Scheduled meetings with my physician have also been cancelled, the most important of which are appointments for Botox shots in my arm and neck. These shots help with some of the symptoms of ALS, since my left arm and hand do not function. I had already had two such shots and was awaiting a third when the lockdown occurred. That third shot has been cancelled because the doctors do not enter the building to perform their work.
I have been on large doses of vitamin C every day, following a program advocated by Dr. Gifford Jones. Jones is a Canadian gynecologist who trained a Harvard Medical School. He was 78 years old when he performed his last surgery at University of Toronto Hospital.He has been critical of prescription drugs as often being useless, at best. He advocates taking all your drugs and throwing them out. I haven’t done so here because that would create a major conflict with the bureaucracy. I have, however, found this Vitamin C regime to be beneficial in relation to ALS symptoms. Movement and feeling in my left leg and foot is almost back to normal. I am able to direct my brain to move my left leg and foot now.
ALS destroys the nerve cells that control voluntary muscle movement so that ,eventually, a person with the disease will be virtually unable to move. Anything that helps lessen or slow the progression of this disease represents an extension on one’s life and a better quality of life. Except for the vitamin C regime, I am now largely unable to slow the symptoms down. Not only do I need botox shots, but I also need some serious physiotherapy, now that I have some movement back on my lower left side. There are two physiotherapists here in a building of 200 residents. I am limited to two visits per week for 15 minutes on a bicycle machine. The problem is funding. The inadequacy of necessary services and treatments will continue to be major problems until governments return to progressive taxation according to ability to pay.
I was once a fruit farmer and I learned a great deal about organic gardening and good nutrition during that time. I have since then grown much of my own food when I can and have always ensured that I eat a very healthy diet. I am almost completely unable to do so now, reliant as I am on institutional food. The food served here is verymuch like the food served in prisons and hospitals. Those of you who have been unlucky enough to be in hospital lately will surely know what I mean. Whereas food was once prepared in the in-house cafeteria, most food services were contracted out by governments eager to save money in the rush to do away with progressive taxation. The result of contracting out food service is a diet of largely poor quality food.
I have normally made up for this deficit by dining out several times a week with friends or family. I can no longer go out nor most food be brought in. I asked my daughter to bring me a cream cheese sandwich on whole grain bread plus some peaches and cherries. She did so and added a much anticipated thermos of homemade coffee. She was not allowed to bring any of this in to me. A new study by respected scientists concludes that the virus is not spread by food or food wrappings.
At least the staff at my nursing home are unionized under the BC government employees union. They get a fair wage for the demanding work that they do and receive some benefits as well. Care workers here receive about $25 per hour whereas unorganized care workers receive far less. In Saskatchewan, care workers make about $15 per hour. Decent wages and benefits mean that most of the staff here don't need to seek part time work elsewhere. A stable, full time workforce is crucial of the virus is not to be spread from home to home. The staff here are very committed to their work and they deserve credit.
All of this brings me to the most serious difficulty I believe those, like myself, in nursing homes face—social isolation. The hardest burden to bare and the one that, ultimately affects my well being the most, is the isolation I now experience. It is difficult to make friends here since there are only two people on my ward of 13 people who I can really converse with. Previously, I managed to maintain a rather robust social life, but most of it was spent outside of the institution, visiting family and friends, going to pubs, restaurants, the parks, music events and the like. I also had lots of people visit me here. It normalized, somewhat, a really difficult life living with ALS. Now, I am almost totally cut off from that contact. I have one primary caregiver, my daughte, Delia, who is allowed to come in once every two weeks for up to one hour. Otherwise, I depend on my online technology to maintain contact with my other family members and many friends.
This social isolation is something I can barely afford, given my age and the almost unchecked progression of my ALS. I need to see people before I die. There are so many people I long to see—kids, grandchildren, and close friends who are family to me. I have not seen my one granddaughter and her children (my four great grandchildren) for several years. I have close friends in Ontario who were going to drive all the way here in September to visit; they can’t see me so they aren’t coming. They will try again to plan a trip in January, depending on where this pandemic is at. If they cannot come then, they will come in the spring. But with my limited life expectancy, I fear I will never see these people again.
Institutionalization means losing your autonomy. We residents here at the home have no way to make our voices heard and give feedback that actually has an affect on our day to day lives. For example, we are told to wash our hands frequently to protect against the virus. I am unable to wash my hands without help and staff here simply do not have the time to help me. I wash my hands once a week when I am given a bath. Although I have always been an early riser who engaged in my political research, writing, and activism right after breakfast, I am not usually helped out of bed until later in the morning and, at that time, I get to go to the bathroom. There seems to be no structure here for resolving issues based on our, the residents, feedback.
Being in long term care during lockdown is similar to what being in solitary confinement within prison systems must be like. There have to be better choices than what we are faced with currently. We have all seen the horrific neglect leading to high death rates in for-profit nursing homes during the pandemic. The publicly funded and run homes are better, but as this lockdown continues on, even “better” becomes intolerable. There is no doubt in my mind that we need to find new ways of caring for elders and disabled people. The lockdown has highlighted all the problems and contradictions of how we are currently cared for. I am one of many who live this painful reality on a daily basis. To me there has to be a better way than the BC NDP government has chosen.
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