In previous posts, I have commented on the fact that Kate’s brother Ken is also living with Alzheimer’s. Like their individual personalities, their approaches following diagnosis have been different. Ken has been more public and more active in learning about the disease as well as taking steps to maintain his abilities as long as possible. Kate has accepted the diagnosis and chosen to be private and to live as though she doesn’t have the disease.
Ken and I stay in touch by phone and email. Here are several excerpts from our recent communications.
RICHARD: Ken, a few weeks ago, I wrote a post in which I compared the different ways which you and Kate have approached your Alzheimer’s diagnoses. As you and I have discussed, I thought it might be informative to the readers of this blog if we learned a little bit more about your own experience. Today, I’d like to know how you came to seek a diagnosis in the first place. Could you tell us a little about that?
KEN: I’d be happy to, Richard. My wife, Virginia, encouraged me to see the neurologist. I was having trouble with transposing numbers, remembering dates and appointment times. I had previously given up tax preparation and other accounting responsibilities, primarily because Virginia did them much better than I did. I spent my time on the construction of family photo albums, which allowed me to work at my own pace without deadlines. I was aware of the greater time it took to complete albums, and the fact that I relied heavily on Virginia to make the final corrections. I have never really been a “detail person”, so it was easy for me to assume my issues were just a normal part of the “aging process”.
RICHARD: Were you surprised when you got the diagnosis?
KEN: Not really. In some ways, I felt relieved in the sense that it explained my decreasing abilities. Being aware of the deterioration part of the disease forced me to appreciate the present, reflect, and prepare for the future. Fortunately, I am an introvert, so this comes somewhat naturally to me. Four years later, I continue to monitor my progression with the disease. Even with the steady decline in short-term memory and ever-slowing processing speed of information, Virginia and I have made the necessary accommodations so that we both can lead happy lives.
RICHARD: Did you have any dramatic experiences that made you think you might have a problem, or was it just a lot of little things? For example, did you ever get lost while driving in what should have been familiar territory?
KEN: No, nothing comes to mind. Thankfully, I am still driving. So far, I haven’t gotten lost. I will say, however, that Virginia does all of the driving when we are together. Most of the time when I am driving I go to places that are near to home. That makes it less likely for me to have a problem.
RICHARD: That’s good, Ken. I recall any number of occasions in which Kate called me from the car asking for her help getting places she had originally had no trouble finding. One of the most dramatic was when Kevin and his family flew into Knoxville. We needed two cars to accommodate all of us and their luggage. I went ahead to the airport. Kate wasn’t quite ready and was to meet us there. In a little while, I got a call from her. She was in downtown Knoxville, not much closer to the airport than she would have been from our house. I told her to stay there. Kevin’s whole family crammed into my car, and we drove to where she was.
That was before I had told the children about Kate’s diagnosis. I knew that must have been a clear sign to Kevin that she had dementia. After I told the children, Kevin told me that he thought it strange that she would have gotten so lost, but he didn’t really think she might have dementia.
RICHARD: I was interested in hearing you say that you monitor your progress. Could you tell me a little more about that? Do you keep any periodic records on how you are doing?
KEN: For the most part, my judgment of my progress is just impressionistic. The only thing for which I have kept records is with Lumosity. For example, after my first year, I had to back down on the playing levels of some of the games, primarily games requiring spatial recognitions and orientation. They also have a feature that gives me a percentile ranking of my performance. That is something I follow. I also added Sudoku to my daily schedule. I did well on the “very easy games”, but struggle with some of the “easy” ones. By March 2018 I had noticed a small, but noticeable decrease in my Lumosity scores, particularly in the games requiring speed and visual-spatial processing. I also recognized increasing difficulties in keeping my calendar and computer files organized correctly and up to date.
RICHARD: I there anything else you would like to say about getting the diagnosis.
KEN: Surprisingly, there are even some hidden blessings. The early diagnosis forced Virginia and me to specifically prepare for the future. We have completed all the legalities that go along with death so that there will be no question of our desires on my passing, which gives me a great sense of comfort. We are much more attentive to the time (and quality of time) spent with our family, extended families, and friends, who all know of my diagnosis. I am also fortunate to have a local “Memory Connections” support group that meets every Friday for 5 hours at a Presbyterian church.
RICHARD: Thanks, Ken. It seems like the primary signs of your having problem involved effectively completing tasks rather than just a memory issue. Those are the kinds of signs that I observed with Kate. Before I learned more about Alzheimer’s, I was like most people. I thought the only problem was a memory issue like remembering people’s names or appointments. Those are the things that bothered Kate, and she was quite frustrated.
It also sounds like you have worked out a way to maintain a stimulating life. I am particularly interested in your support group. Perhaps, we can talk more about that next time.
KEN: I’ll look forward to it. Take care.
