On Nov. 16, 2021, I was snug as a bug in my very comfortable bed in the hospital. Leah had just returned from home to find out what was going on with me. I didn’t know, except there were a bunch of tests that I was scheduled to take. Apparently, depending on the results of the tests, I could expect to be in the hospital until they confirmed the autoimmune disease and the cause of the disease.
“Wow,” we said, “this could be a long time and Christmas is coming.”
The doctors (remember – a teaching hospital) were trying to verify the autoimmune disease. They were also trying to identify the ‘trigger’ that caused the disease. I don’t think that they wanted me there for Christmas, either.
The tests that were proposed were;
-bloodwork for autoimmune markers, muscle enzyme;
– EMG test for muscles;
– breathing test;
– heart ultrasound;
-CT chest/abdomen/pelvis (underlying cancer screen);
– swallowing assessment; and
– new tests could be added when and if new issues would be detected.
I also had to take 50 mg of prednisone daily, and could not receive a COVID booster until my prednisone dosage was lower.
Because of my swallowing problems, I couldn’t take either food or water into my mouth and therefore my throat. At first, they fed me through a tube, through my nose. It was terrible – I actually screamed for them to stop but the nurses continued until the tube reached my stomach. The next day they pulled the tube out (terrible, too) and reinserted it directly into my stomach. For four months I was fed directly from an IV bag into my stomach. I was actually fed for eight hours per day with no feed for 16 hours.
Leah has known of all these tests since day one and, after seeing that I was in good hands, decided to return home to get new clothes and other supplies. She saw that the hospital clothes were not terrific, so she went shopping for ‘lounging clothes’ to help me be more comfortable. I ended up being in the hospital for 30 days and Leah came to visit every day, weather permitting. It was over an hour drive to the hospital – not fun. We didn’t have a lot to talk about but Leah got to talk to many of the doctors. Remember – I did not have good listening skills (cognitive impairment) so Leah became my ears. She kept a running diary of all her conversations with hospital personnel and used her notes to fill me in
The nurses didn’t recommend the hospital TV, so Leah also brought in my iPad and her laptop. Leah then called my daughter in Haliburton and my son in Calgary via Facebook to explain my condition. My daughter helped to set me up with Netflix on my iPad so that I would have a great choice of movies to watch. At this point I was quite comfortable. The nurses would wake me at 7 a.m. for the basics, then at 9 a.m. to take blood. I was not allowed food but my food bag was changed regularly.
Essentially, I just lay there in bed and did whatever the doctors or nurses wanted. Every once in a while, the nurses would come to my room and wheel me in my bed to the location for the current test. I was in an isolated private room because the doctors feared that I may have tuberculosis. On day four they were quite sure that I didn’t have any type of tuberculosis so they moved me into another single room because of a COVID-19 possibility. On day 11 they moved me into a quad (four to a room) room where I was for the rest of my stay.
Without Leah’s help I would have been completely isolated. She was a blessing for me but it was very stressful and tiring for her. I don’t know how she managed, but she did. Little did we know that this was just the beginning.
This story of my caregiver continues in my next column.
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Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth and was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. He shares his experiences in his column entitled “My Voyage with Dementia”. Follow him on his blog entitled Voyage with Dementia https://myvoyage553264702.wordpress.com.
