Yesterday as I reflected life since Kate’s diagnosis, I conveyed how fortunate we have been. I also indicated how important our approach to the disease has been. I didn’t have a good understanding of how well it would work. We simply wanted to enjoy whatever time we had left. We have done that and more. You might think then that I would recommend that others do the same things we have done. In the most general way, I would. The specifics, however, might be very different from what we have done. Let me explain.
I started this journal without any ideas of what our journey would be like or any belief that our approach would make any difference. I was like everyone else when faced with a diagnosis of dementia. It was the biggest crisis of our lives, but we were determined to make the most of it. During those early days, we considered the things we liked to do. Since I am the planner of the family, I simply began to arrange for us to do them. I had no grander plan than that.
I am very careful about giving advice. There are too many differences from one person to another or one couple to another. I would need to know a good bit about the people and their situations before advising them as to what they should do.
Kate and I have been blessed with a number of things that make our experience more positive than that faced by so many others. Virtually all of them are things for which we cannot claim any (or at least full) credit.
1. Kate’s Alzheimer’s has not been of the type that produces some of the most troublesome symptoms of the disease. I know caregivers who have had to deal with severe anger and other difficult behaviors. Kate has been more irritable than before Alzheimer’s, but it has been minor and occurred mainly in the earlier stages.
2. Neither of us has had other health issues to contend with. As we approach 80, we are beginning to feel the effects of arthritis and cataracts and have little aches and pains we didn’t experience when we were younger but nothing of any great consequence right now.
3. I was at a point in my career that allowed me to retire so that I could spend more time with her. I feel for those who are earlier in their careers and must maintain their employment while devoting themselves to caregiving.
4. We share so many common interests that it is no sacrifice for me to “live in her world.” I am thinking of things like our love for music, theater, and travel. Each of these taps into our intuitive rather than rational abilities. Music and theater continue to play a major role in our lives. Our major traveling ended in 2015 when took a trip to Switzerland. Prior to that, but after her diagnosis, we traveled to Africa, New Zealand, Machu Picchu and the Galapagos Islands. We still make day trips to visit friends. In fact, we are leaving shortly for Nashville where we are visiting Kate best friend, Ellen.
5. Although I have a lot of OCD tendencies, neither one of us is the kind of person who likes to control the other. That’s not a little thing. Over the course of our marriage, each of us has allowed the other freedom to be who we are. As her caregiver, I have to change my ways a bit. She doesn’t try to control my behavior now, but I am controlled by my responsibility to her. I live her way as much as I can. Increasingly, she accepts my help as she becomes more dependent.
6. We are both conflict avoiders. We are fortunate that we have been able to work out the many issues that arose before and after diagnosis.
7. Despite my compulsiveness, I am a patient person. That has helped me a lot more after diagnosis.
8. Finally, we have sufficient financial resources to manage the extra expenses associated with eating out, traveling, and the musical and theatrical events we attend.
As I said at the outset, people’s situations are different. I am not ready to say other couples should do exactly what we did. That said, I believe almost any couple could benefit by practicing the point of the Judy Cornish’s The Dementia Handbook. She suggests that caregiving is easier is we focus on what our loved ones with dementia are able to do rather than what they are not able to do. That is, not devoting so much attention to the abilities that they lose (their rational abilities), but on the their intuitive abilities (the ones that derive from our five senses). They retain the latter a long time after diagnosis. The really good news is that most of the things all of us do for pleasure depend on our intuitive abilities. If you are a caregiver, consider what your loved one likes to do and go from there.
I don’t want you to believe that everyone’s journey would go as smoothly as ours. Many things have to fall in place for that to happen. They did for us, and they have for others. If you are looking for another couple’s success, I recommend Mike and Me by Rosales Peel.
