The year 2024 has not started out to be as positive as I had expected. Thinking back over the past three years, both my wife and I have been struggling with our health care systems. We are certainly aware of our increasing age but I do not think that ageism is a negative factor with either of us – my wife nor I.
On Dec. 29, 2023, my wife, Leah, went into surgery at the Stratford hospital to get a new left knee. Everything went well and she stayed in the hospital overnight to be assured that there were not any problems. At noon the following day, she checked out but heard that there were no more surgeries allowed at the hospital because of the rise of RSV problems. We hope that this is not a portent of the future. An RSV can be COVID-19 or similar viruses.
The pain of the new knee kept Leah sleepless for a week – not ideal for healing. She is going to physio twice per week and we hope that this will help the knee to heal faster. During this recuperative time, I am the caregiver. I am doing the best that I can. I do find caregiving difficult, but I am learning.
My wife, Leah, has been my caregiver for the last three years while I have wrestled with dementia. Now she is the patient while she struggles to recuperate from the surgery on her new knee. In 30 days, the pain will be over, according to the medical people. The ability to be able to walk on two legs will be worth the wait for her, she says. She is very brave. I don’t think that I could go through that experience.
From my point of view, I do not see an end to my dementia. My dementia was unearthed with a brain scan in late 2013. It was further confirmed as MCI by extensive tests in 2002. I created my “Seven Pillars for a Good Life” to try to reduce progress of my dementia past the MCI level. At this time, early in 2024, I am not optimistic. I am loading myself up with activity programs given by the Alzheimer’s Society with the hope of controlling my MCI until a drug solution comes along. I don’t see my neurologist often but they are always available, if needed. As long as I maintain an MCI level, I should be able to play golf this spring. I can only hope! My last game was two years ago.
And now for the rest of the story… as Paul Harvey used to say in his old daily radio program.
A few years ago – late December 2021 – that I became sensitive to spicy, hot food and carbonated drinks. Food and drink were taken into my mouth slowly and swallowed with much care – it was painful. Leah always finished her meal much faster than me. Eating and drinking was becoming very difficult. This pain got worse in February but was still tolerable. By March we decided to phone our primary doctor again to find out what was causing the pain. Unfortunately, she was not available and my suffering increased. Finally in April, we called my doctor again and got an appointment with my doctor’s assistant. After three or four appointments, it was obvious that he did not have a clue what to do to relieve my suffering. Next, the medical group brought in different family care doctor. She was young and inexperienced and after three appointments gave up trying to find an answer to my pain issues.
On Labour Day weekend, Leah came in from a round of golf, looked at me in the living room and noticed my suffering and said those bad words – “It’s off to the ER!” The triage nurse at the ER did a good job with me and by the time the ER doctor came to me he knew pretty well what to do. He prescribed 50 grams of prednisone (a steroid) per day, decreasing by five milligrams per day. The prescription ended 10 days later and coincided with an Oct. 13 appointment with my primary doctor (at long last she was available). She immediately sent me out to get a blood sample, as well as a skin reading from my rashes. In about three weeks, with samples of the blood and my rash in her hand she advised that I go to a rheumatoid specialist. We had two referrals – the wait was to be from eight weeks to one year. Fortunately, the appointment actually came in two weeks. I was in pretty bad shape even with the prednisone. So, in two weeks, I went to the rheumatoid specialist, and was examined on a Friday afternoon in mid-March 2023. I felt better after her prognosis. The rheumatologist’s diagnosis was an autoimmune disease and a recommendation for approximately 10 tests to confirm the diagnosis, in various hospitals, over the next few weeks. This was on a Friday afternoon. We went home and waited for test dates. We finally had hope that an answer was available. But it wasn’t.
On that Sunday Leah noticed that I was in really bad shape and could hardly breath. Monday morning, Leah was on the phone to the rheumatologist. We got a call back at noon and was told by the rheumatologist to take me to St. Joseph Emergency, with a take-away bag, in case they wanted me to stay for tests.
To be continued…
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Bob Murray is retired from the graphic communication industry, living in Seaforth, and was diagnosed with Dementia in 2013. Follow his blog – https://myvoyage553264702.wordpress.com.
