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Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

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Does she know what lies ahead?

I don’t think I am alone among caregivers when I wonder exactly what Kate knows. By now I realize that she knows very little when it comes to her rational thought/abilities. Many times I have mentioned how often she can’t remember my name or our relationship. I take comfort in the fact that her intuitive thought/abilities are still working well. Through them she almost always recognizes me as someone very familiar and trusting.

For over a year, I have also realized that she no longer remembers that she has Alzheimer’s. At first, I wondered if I should tell her and, on one occasion, I did remind her. She hadn’t remembered, but she quickly forgot, and I haven’t said anything since. I haven’t see anything to be gained by it.

She has always recognized that she has problems and needs my help. It was only a year ago in July that she began to experience anxiety or panic over moments when she didn’t seem to know anything – where she was, who she is, who she was with. Within the past few weeks, I have sensed that she might believe that her problems were of a more serious nature, not just a periodic lapse of memory. Over the past week or two, she has said and done things that lead me to think that she knows she is declining and is afraid of what lies ahead.

Sometime in the past day and again today at lunch I felt strongly that she recognizes that through her intuitive thought. She was awake when I went to get her up for lunch. She didn’t seem frightened, but she was uneasy and insecure. She was especially eager for me to help her with everything. That follows signs of increasing insecurity and appreciation for my helping her during recent weeks.

At lunch, I said something about her mother and father. She wanted to know their names and something about them. When I said that her father was one of eight children, she said, “I know why.” I said, “Why?” She said, “Because in those days, they needed more children.” I was surprised that she came up with this and said, “You know, you are smart.” She beamed and said, “I think so too.” It was as though she was relieved to have me say that. Off and on she has said she is smart, but that has been more frequent recently. I have felt she was trying to convince herself that is true. It would be easy to think she is not given how poor her memory is and how little she is able to do.

During our conversation, she stopped and said, “I want to tell you something.” She looked very serious. I leaned closer to her. She said, “I know that you will always take care of me.” I said, “I will. You can count on that.” Her eyes filled with tears, and she said, “Thank you. I know you will.” I felt we were thinking similar thoughts about the future. There is no way I can be sure, but the look on her face made me think that.

I told her I loved her, and she said the same about me. We began to talk about our marriage, and I mentioned our children. She said, “Who are they?” I told her and she asked if I had a picture. I pulled out my phone and showed her pictures of Jesse and Kevin. She said, “Do you think they love us?” I said, “I know they do?” She choked back her tears.

In a few minutes, we got up to leave. She started whimpering and was loud enough that I saw people at two different tables look up. On the way to the exit she continued to cry softly. We stopped right there in the dining room and hugged for a moment and then went on.

I don’t know precisely what she is thinking, but she seems very concerned and doesn’t see a happy ending. I am glad she still knows that I will be with her all the way.

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Thinking about Stress: Part 1

There is no question that caring for a loved one can, and often does, cause a good deal of stress. Judging by the frequency with which people remind me to take care of myself, caregiver stress seems to be common knowledge. I find, however, that the degree of stress can vary tremendously from one person to another. I don’t think that variation is well understood.

That leads me to a favorite topic of mine: generalizations. All of us depend heavily on them. They are often very useful; however, applying a general pattern to a specific situation (in this case, the stress of an individual caregiver) calls for more detailed information about the specific caregiver and her/his situation.

I usually think about three major elements that play a role in stress experienced by a specific caregiver like myself. One is the sources of stress. Some things produce a lot of stress. Others produce very little. A second category is the personal experience and characteristics  of the caregiver. Some people find it difficult to deal with stress. Others find it less so. The third category involves the things a caregiver can do to reduce or minimize stress. In today’s post and the one following, I would like to comment on how those three come together in my particular case.

As Kate’s care partner I have experienced stress, and that stress has increased as her Alzheimer’s has progressed. As I look to the future, I believe that stress will likely increase. On the other hand, stress seems to be less of a problem for me than for many others. I say that based on reading a variety of online forums for caregivers as well as over thirty books by caregivers who have provided vivid accounts of their experiences. When I consider what they have been through, I see good reasons for my feeling less stress, and the three elements I mentioned above provide an explanation. In this post, I will deal with two of them.

Sources of Stress

All stressors are not equal. The ones I confront are minimal compared to those of other caregivers. The load I carry is simply not as great as that of theirs.

In the first place, I was at a point in my career when I could retire to devote my attention to Kate. Many caregivers have a variety of other responsibilities that also demand their attention. I am especially mindful of spouses who have to continue working to pay the bills and can’t afford to hire someone to help. There are many women who are not only working and caring for one or both parents but also care for children. I am familiar with their stories and recognize the struggles they are facing.

Kate has also been easier to care for than many other people with dementia. It is true that she has been somewhat more irritable, especially as the disease has progressed, but that pales in comparison to other situations with which I am familiar.

In addition, neither Kate nor I has had to deal with any other serious illnesses. That is unusual for people our age. We are approaching eighty, and Alzheimer’s is the only significant health issue for us. I have been sensitized to this fact when Kate has had a cold. That creates an extra demand for me, but it is nothing compared to other chronic illnesses.

Personal Experience/Characteristics of the Caregiver

Many caregivers for a person with dementia have little experience with the disease. They begin from scratch. Often, they are children caring for one or both parents. They face a steep learning curve that calls for knowledge of the disease itself while adjusting to the new role of parent care. This has to be incredibly stressful.

Kate and I had been caring for our parents and my father’s significant other for twenty-two years at the time of her diagnosis. Her father had a stroke and her mother vascular dementia. My mother had an unspecified form of dementia; my dad’s significant other had vascular dementia, and my father had a stroke. I feel as though everything I had learned from those experiences prepared me to care for Kate.

I also believe my personality makes caregiving easier for me than for others. I can’t take credit for that. I thank my dad. He was the same way. He kept his sense of humor and focused on everything he could see as positive and minimized the negative. He was a problem solver in his work and in his personal life. He had faith there was a solution to every problem he encountered. I think I am a bit more realistic than he was, but I recognize many ways in which he and I are similar.

If it were only the things I have outlined above, I believe my stress would have been less than that of other caregivers, but there is more. It involves the variety of ways in which I have been able to minimize my stress. I’ll save that for another day.