I imagine those who read this blog on a regular basis would say that Kate and I have maintained an active lifestyle throughout the period since her diagnosis. You are right. We are busy. Upon receiving the diagnosis, we made a commitment to do as much as we could with our remaining time. I think we’ve done pretty well. I have become an event planner for our daily lives. That doesn’t mean planning lots of special activities although there have been plenty of those. It means making the everyday activities special. Things like our morning visits to Panera as well as eating out for lunch and dinner have become highlights of every day.
We do live full lives; however, that doesn’t mean that life is the same as it used to be. Even before Kate’s diagnosis, she gave up her most fulfilling activity as our church librarian because the early symptoms were keeping her from performing her duties as she knew they should be done. She had served faithfully for 19 years and had made the library the “go-to place” for Sunday school teachers and children. Her academic credentials (M.A. in English and second Master’s in Library Science) combined with her professional background as an English teacher and school librarian made her a perfect fit for her position at the church. She took great interest in helping everyone who was looking for just the right book(s) for a particular occasion or person. She worked nearly fulltime as a volunteer. Stepping down from this position was a major change in her life.
At the time of Kate’s diagnosis, she was still driving. She continued to drive another two and a half years before having an accident. Until then, she was free to do pretty much what she wanted. She and her friend, Ellen, had lunch together every Monday when I was at Rotary. They also got together at other times during the week and often went shopping together. They shopped for plants. They shopped for clothes. They shopped for knick knacks for their homes.
I know from looking back at my journal that Kate experienced lots of frustrations related to her worsening memory, but there were no outward manifestations that anything was wrong. It was only after three years that Kate told Ellen about her diagnosis. Ellen had not even suspected.
After an auto accident in which she totaled her car, Kate’s world became much smaller. She was now dependent on me to get her where she wanted to go. Of course, she also got around with Ellen, but it wasn’t like having the personal freedom that driving her own car had given her.
She continued to be active in PEO. She attended their monthly meetings, hosted meetings at our house, and occasionally presented the program. She also served on a scholarship committee that had responsibility for interviewing and recommending candidates for scholarships and grants through the national office. She began to forget meetings and found it difficult to fulfill her obligations on the scholarship committee. As her memory worsened, she couldn’t remember the other members. I suspect that she had difficulty participating in the conversations. She no longer wanted to attend and ultimately dropped out.
That is when two of her existing activities came to dominate her life. The first was the yard. She had always enjoyed tending to her plants. Now she could devote more time to that interest. The other was her computer. For a number years she had enjoyed working on photos and had started work on a couple of family albums. She never came close to completing one, but she was very active in picking out and editing photos. Even today, when someone asks her what she is doing, she tells them she is working on her family albums. Like most of us, she also used her computer for emailing.
At some point, I gave her an iPad and introduced her to several jigsaw puzzle apps. Little did I know how important these would become in the years ahead. With the progression of her Alzheimer’s, working on the computer became more difficult. She was frustrated. She stopped checking emails. Gradually, she stopped using the computer.
That left two activities she could do on her own, pruning the shrubbery and working jigsaw puzzles on the iPad. She had no trouble filling an entire day between these two activities. They were things she could do without having to experience the challenges of coordinating with other people. She could work at her own speed, and nobody was telling her what to do.
Her friendship with Ellen was her only close personal relationship. Our children had grown up together in the same neighborhood. Ellen and her husband, Gordon, were our very closest friends in Knoxville. Then in 2013, Gordon died. Two years later in August 2015, Ellen had a stroke while visiting her daughter in Nashville. She has never been able to return and is now in memory care. We try to visit her once a month, but the relationship can’t be the same now.
So Alzheimer’s cost Kate her volunteer job at church. Then she had to give up driving. She lost the ability to use the computer. She lost her best friend to a stroke. Her world has shifted from one of high involvement to only working in the yard and on her iPad.
One of my concerns right now, is that she has been spending less time in the yard than she used to. The weather accounts for part of it, but I think it is more than that. Three years ago, we were visiting Lowe’s two to three times a week for plants. She spent a good bit of her time planting them. Finally, she was running out of places for new ones. She could, however, continue to prune. She started her pruning a year before my dad’s 100th birthday party in October 2013. Gradually that turned into just “pulling leaves.” Right now there are few leaves left on any of our shrubs. That may also play a part in why she is not spending time in the yard. Spring will be here soon. I am eager to see if her interest in the yard will return to the passion it was before. I fear that it won’t. That will leave only her jigsaw puzzles. Everything else she does is dependent on me. She needs me more than ever. Yes, I keep her busy, but there is no denying that her life is dramatically different than it was before Alzheimer’s.