The other day I read a tweet by Ian Kremer noting the importance of having a team to aid the caregiver and the person with dementia. I asked myself, “Do I have a team?” It didn’t take me long to answer affirmatively; however, the members of our team don’t know they are on it. Let me explain.
In the typical usage of the term, a team suggests a number of people who work or play together to achieve a common goal. If we begin with this concept of a team, I think most caregivers would have to say they don’t have one. I certainly don’t. In fact, one of the most significant problems experienced by many caregivers is social isolation. I don’t believe it is because people don’t care. I think they are just unsure of what to do for people with Alzheimer’s and their caregivers. I have read a number of things that point to the need to give others a better understanding of how they can help, but I believe this is a long-term solution. Caregivers need something right now.
My own approach has been to take the initiative to engage others in helping rather than waiting for them to take the first step. Some of this has come about by asking directly. For example, on numerous occasions I have invited different friends to have lunch with us. Some of these have been members of the Sunday school class that I taught for ten years. I had already been in touch with them by phone and in class for years. It was only natural. I knew that they wanted to maintain some contact and also that it would be good for Kate.
We have several very good friends who live in Nashville, especially Kate’s friend, Ellen, who moved there following a stroke. We have paid more visits to those other friends than we might have done otherwise. None of these people would think that they are doing anything special to help us, but they are.
Some of these visits occur right here in town. Two days ago, for example, a childhood friend and his wife from West Palm Beach drove over from Gatlinburg where they have a condo. They come to Tennessee about four times a year. Almost every time they come, we get together either in or near Gatlinburg or in Knoxville. We always have a good time, and they have been very supportive since learning about Kate’s diagnosis.
There are many more members of our team in just about every place that we go. These include all the servers at the places we eat, the other customers at Panera or other places. That happened at lunch today. As we were leaving, I heard someone call my name. It turned out to be someone we know from church and my Rotary club. We stopped and chatted about fifteen minutes before moving on. He wouldn’t think of his having done something to lift our spirits, but just engaging in conversation did the trick. Because Knoxville is not a large city, we have these kind of experiences wherever we go.
Finally, I would say that when I decided to be more public about Kate’s Alzheimer’s, that served as an implicit invitation for people to ask how she is doing and how I am doing. Thus, when I see people without Kate’s being along, I find myself telling them how things are going. All of the volunteer activities in which I have participated have also generated additional support for me. Of course, those activities are fewer now, but they have been significant.
I shouldn’t overlook the power of a team of people with whom I communicate via email. I have two college friends with whom I exchange as many as fifty emails a day. The longevity of this connection and the variety of interests we explore have been invaluable. In addition, I have established contacts with a few friends and family who have their own personal experiences with Alzheimer’s. Those relationships provide communications that deal more specifically with issues related to dementia and caregiving.
I almost forgot to acknowledge the team of professionals who are more obvious members of our team. They would include Kate’s doctor and dentist as well as the sitters who are here at home with Kate three afternoons a week.
Except for the exception of these professionals, none of the people I mentioned would think they are part of a care team working to make our lives better. But that is just what they are doing. They have been important sources of encouragement and support without having to make any special commitment to visit us, to send food or cards, or anything other than relating to us when we meet. It is easy for them, and it is easy for us. Best of all, it works. Yes, we really do have a team of people working to make our lives better. They just don’t know that is what they are doing or how important they are. I am grateful for their presence in our lives.