Families need to be informed of the diagnosis right away and they should be given information on where to find the appropriate, ongoing care. I felt that it was important for my husband to continue doing productive work for as long as possible. But, on the other hand, he was still working as an accountant and I did not want his good name smeared because of an error he might make. It took me a long time to persuade him to retire. His symptoms were not obvious to most people then. Even the geriatric neurologist was unable to make a diagnosis
I insisted that my husband be treated as an adult and not like a child in the kindergarten. Later, when he attended a day center, I discovered that many caregivers tended to talk down to him, which I found insulting. I tried to take my late husband’s expressed feelings very seriously. I wanted him to enjoy meaningful activities to fill each day and at first he continued to play chess … later, he dropped that and continued to play bridge. It amazed me and his bridge friends that he played until a few days before he died of a stroke. Maybe because he was a chartered accountant by profession, holding numbers in his head was his strong point. More than anything, my late husband loved the outdoors and spent as much time enjoying nature as he possibly could. He walked a lot and spent a great deal of time in the park not far from our home. When I was with him, he spoke a bit, always showing me the half full cup. I have to admit that it was difficult for me to share his optimism at that stage.
Physical contact like hugging, caressing and hand-holding remained an important part of our lives. I wanted him to know that at all times that he was still loved, despite the terrible disease that was tearing his very bright mind apart. My children and I noticed that he still liked to be with people even though he spoke less and less. It was amazing how my husband managed to maintain his sense of humor.
He had been a stamp collector since childhood so continued to take out an album and enjoy paging through it. Sometimes he spread stamps from an envelope onto his desk to ‘sort them out.’ At first he moved the stamps from one place to another but slowly I think he forgot about the contents of his study. He was always polite to friends who visited but I doubt whether he remembered their names or even who they were.
And every evening after supper, I played music from the 50’s and 60’s and invited him to dance with me. There were times when he sat down as the music started instead of taking me in his arms. I realized that he needed prompting. And then, we shuffled around the floor. It was dancing of sorts, but we enjoyed the music and most important of all, we enjoyed the closeness.