We have all heard that it takes a village to raise a child. I’ve also heard a variation of that for caregivers of people with dementia: “It takes a Team.” This idea grows out of the recognition that caregivers need to rely on others for help. One part of the team would be those who are professionals like one’s primary care doctor, other specialists, as well as paid caregivers like care managers and personnel at the variety of care facilities that are cropping up in many communities. Another part would include family and close friends.
I agree that we caregivers need a team. I have that in our medical and dental professionals as well as a host of others who would never imagine they are on the team. I am thinking especially of those who work at the restaurants that serve us. I have made sure that they know of Kate’s diagnosis, and they have been very supportive. In addition, we often run into friends wherever we go. They never realize the importance of these brief encounters in lifting our spirits. I should also mention the people who are strangers like those who have helped when Kate goes to the restrooms in public places. I had one of such experience this past Sunday at a movie theater. I don’t know anything about the young woman, but she made me feel more comfortable. When Kate walked out of the restroom, she was holding the woman’s hand just as I might have done.
Beyond these things, I have also found that it pays to have an arsenal (a bag of tricks) that I can depend on when I face the various challenges that arise in caring for Kate. I have relied heavily on music and social engagement. That has worked well. We have binged on music and eating out. Over the past year and a half, I have increasingly used Kate’s family photo books, especially her “Big Sister” album that her brother Ken made for her. Life changes, however, and it’s good to have other alternatives. At the moment, my reading to Kate is becoming another significant way to provide her with pleasure.
Kate’s self-initiated activities have declined drastically. For a long time she spent most of her time on her computer and working in the yard. When the computer dropped out of the picture, it was replaced with an iPad on which she worked jigsaw puzzles. Then the yard work disappeared. That left her with only one such activity. We are almost at the end of using the iPad, but two weeks ago I started reading to her. Despite the fact that it takes more of my time, it has been rewarding for both of us. I have thoroughly enjoyed reading to her and seeing her response. It is a welcome addition to my arsenal and could become more important in the future.
Thus far we have read The Giving Tree, The Velveteen Rabbit, Charlotte’s Web, a quarter of Anne Frank: The Diary of a Young Woman, and two chapter’s of Erma Bombeck’s Family: The Ties That Bind . . . and Gag. The nice thing is that we can re-read books though I plan to keep my eyes open for new ones.
Reading is relaxing for Kate. It also has an impact on her mood. Though she doesn’t understand everything, she picks up enough to make it a pleasant experience. Last night she started to work on her iPad but soon became frustrated and wanted to go to bed. I believe she was discouraged and looked at going to bed as an escape. Once she got in bed, I asked if she would like for me to read something. She did, and I picked up The Velveteen Rabbit. We had read it several other times during the week, but he enjoys it just as much each time. I enjoy seeing her response as I read. She makes frequent comments that let me know she is listening and, at least, understands what I read in the preceding sentence if not more than that.
Last night’s experience was particularly meaningful to me. It was very much like reading a bedtime story to a child. When I finished, I told Kate I had enjoyed it and thought I would look for some other books like it. She liked the idea. Her frustration was gone. My arsenal is growing.
