About a month ago Leah (my caregiver and wife) was invited to a friend’s (Her name is Dee) cottage up near Kincardine for three nights. My health had needed Lea’s full attention, 24/7, for the last two years and three months. She left me alone while she went to visit but had a PSW come to check up on me each day for the three days that I was alone. Both Leah and I enjoyed the break. We really needed this break. Tomorrow Leah heads up to Dee’s cottage for one might.
Fortunately, Leah leaves the refrigerator well stocked for the time that she is away. In addition, I have a Lifeline which would call for help if I had a fall or another accident and no one was home.
Since being diagnosed with cognitive issues (dementia) via a brain scan in 2013 my wife has been my sole caregiver. She has been through bi monthly meetings with the local Alzheimer’s Society. (ALZ). However, I had very little, almost non-existant, in guidance in how I should care for my dementia. There is no manual for me. I presume that I will be taught by my caregiver, wife. Leah, slowly took over the functioning of me and our house. She went way out of her way to look after the one who has dementia – that is me. I needed her help and she helped whenever she could. An onerous job for anyone.
However in early summer of the year 2021 I developed another problem – swallowing became very difficult. This was very hard on Leah because eating became a problem for me. It kept getting worse and worse due to an overall weakness. I had to give up golfing and gardening – just no strength throughout my body. Our Personal Care Doctor (PCD) was away and other doctors tried to help but they had neither training nor experience. Life for Leah was very difficult as it was for me.
The load on Leah increased until one day in early September she returned from golfing, took one look at me and said “Next stop is the Emergency (ER).” I objected strenuously but she won. We were in ER and they accepted me into triage within a half hour. My wife is very persistent. An hour later we saw the ER doctor and he prescribed a steroid medication, prednisone, and a histamine medication. I left the ER with two prescriptions.a heavy dose of pills which will reduce by 10 per cent, per week. Slowly the swallowing improved and I began eating liquids. Leah watched over me closely – a great caregiver – monitoring my pills and food. A lot of work looking after me and my new medical issues as well as dementia.
There was some improvement until mid October when my PCD returned. She had me give blood and she took tissue samples of the skin where there was a rash and sent it to the lab. My wife was quite upset as the five months waiting for our PCD to return and my increasing swallowing/eating problems. It was enough looking after me and my dementia but the increasing internal problems were difficult to handle.
Finally our PCD warned us that the problems were very serious and she recommended referral to a specialist – a Rheumatologist. The answer for the specialist came back in about two weeks. Two different specialists would see me within four weeks and one year. What to do now. I was really out of it but I believe my wife (the caregiver) got on the phone because within two weeks we had an appointment in with a rheumatoid clinic near London. Just an hour drive from our home.
The doctor recommended a whole series of tests and sent us home with directions to go the various hospitals for the tests. But within two days my choking was very bad and Leah phoned the rheumatologist. She recommended that we go to University Hospital Emergence for admittance immediately. We did that. Their ER put me through a 14 hour triage before they agreed that they could help me. Then, at 4a.m., I was admitted. And Leah went home after a gruelling day and partial night.
There is a lot more to this story and I will cover it in the mid September edition of this newspaper.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth since 2015. Murray was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. Follow him on his blog entitled Voyage with Dementia – https://myvoyage553264702.wordpress.com.
