Category: Caregiving

I am reading an interesting book on caregiving, I’m Still Here by John Zeisel. His primary message is that even though someone has Alzheimer’s, they are still people with feelings and abilities. They just aren’t able to do all the same things in the same ways they have done in the past.

I like this perspective and have tried to follow it though not always successfully. The underlying assumption is that it is the caregiver’s responsibility to adapt to changes; the person with the disease can’t do it. This is not a new idea, but it is another reminder to those of us who have assumed this role. It can’t be said enough. I suspect many of the frustrations we experience might be reduced if we kept this in mind when we relate to our loved ones.

Occasionally, I have told a few people that a significant part of a caregiver’s time is spent trying to prevent or to solve problems. For creatures of habit like me, it can be a chalengel to continuously adapt in order to fulfill these responsibilities. We won’t always succeed, but we can keep trying. Years ago, I knew a counselor who worked with parents of children with behavior problems. One of the things he told parents is that they may do the wrong thing one time, but there is always a chance to do the right thing the next time. Caregivers also get multiple chances to do what works best. Most of us don’t come to this role with all the knowledge and skills to be effective, and we don’t develop them by simply receiving instructions. It takes practice. We have to develop patience with those for whom we care. Just as important, we need to be patient with ourselves.

Like many other people in their senior years, I am now much more aware of ways in which my father influenced me. I have been especially mindful of the way he cared for my mother who had an undiagnosed form of dementia and how his approach to caregiving has been a model for me.

Dad had three qualities that helped him to be a better caregiver. First, he was an optimist who responded to the problems in his life by focusing on how to solve them. He faced far greater problems in his life than I have, but he never let them get him down. That occurred early in his life when his father left him and his mother. As a teenager he had to help support the two of them. Not only that, he was a successful student and athlete. Later, in his own business he faced many challenges but faced them as opportunities.

Second, he was a man of initiative. He didn’t sit back and wait for things to happen. As he faced potential isolation as my mother’s sole caregiver, he became active in his Kiwanis club. He and my mother were active in a local senior center. The two of them were volunteers with Meals on Wheels. At the time, I thought it was just a way to be active, and it was. But there was more to it. I now suspect it was driven by his own attempt to keep my mother engaged.

Even though he was in his 80s, he became an avid user of the computer and kept up an extensive communication with many people. He was also very extroverted and engaged in conversations with other people wherever he was. As Mom declined, he continued to take her with him wherever he went except to his Kiwanis club. During that time, he dropped her off at a daycare center for people with dementia. Otherwise, he had no help.

Third, although he had no special skills or knowledge about dementia or caregiving, his love for my mother coupled with the two qualities mentioned above made him a successful caregiver. Looking back, I realize that Dad did not tell me much about what he was going through. I do recall his saying that she would get really mad at him and then would be over it in a few minutes. I also remember his describing how he tied a string around his wrist and Mom’s wrist. That way he would know when she got up during the night. I recognized the toll it began to take on him. My brother, Larry, and I worked hard to arrange in-home care to help him. To put it mildly, he was very resistant to having such help. He was determined to do it himself. She slept in the same bed with him until a few nights before she died. At that time, he was turning her every two hours where she lay in a hospital bed beside his own bed.

As I said earlier, Dad had a more challenging life than I have had, but I am a lot like him. I don’t think he was as analytical about what he did as I am. I think he simply did what he felt was right. His qualities naturally helped to keep his stress at a minimum while also taking care of my mother.

I have had much more experience with caregiving and with a lot of the written work about caregiving, how to care for your loved one, and how to take care of oneself in order to be a better caregiver. I still believe that the qualities I inherited from him and observed in his life have been the most significant influences on the way that I am caring for Kate. I am grateful to him.

It’s a quiet Sunday morning. I’ve had breakfast and my morning walk. As always, Kate is still asleep. Being a music lover, I have some of my favorite music playing on my audio system as I fold clothes that I didn’t get around to folding yesterday. I gather each of Kate’s tops, pants, robes, and socks and put them in their appropriate places. I return to the kitchen where yesterday I had carefully placed her underwear on a towel to dry. Now I fold them and put them in the drawer where historically Kate has kept them. Now they could make their way to almost any other place in the house. I place them neatly in the drawer even though I know they won’t stay that way long.

As I do this, I think about the fact that I didn’t even know how to run the washer just a few years ago. I think about my dad who cared for my mom who had dementia. He must have been doing these same kind of things for her though I never heard him say a word about it. I was with them almost every day, and I never imagined the things he was doing. He did it because he loved her. They met in the ninth grade and were together until Mom died at 87.

I also think about the other caregivers who right now are doing similar things for their loved ones. They, too, do it out of love. I know. I feel the same way. I am glad I can do it. What a nice morning.

There is nothing especially new to report, but I have been thinking about the challenges I and other caregivers have that other people might not think of. One of those is getting settled into doing something and then having to make a change. That happens when Kate is tired of doing what she was doing before I am finished with what I was doing. When that happens, I start to get my things together to go out (usually to Panera). That often happens in the morning when I am up and ready before she is. I let her sleep as long as she wants. Sometimes she gets up and dressed without my realizing it. When this happens, she walks into the kitchen (which is my office) and is ready to walk out the door. She gets a little irritated when I have to get my computer packed up as well as getting a cup for her as well as her iPad. I think of this as humorous given that I have usually been waiting quite a while for her to get ready.

Once we get to Panera she only wants to stay for about an hour, sometimes less and occasionally longer. In either case, I get engaged in something on computer. Periodically, I am interrupted by the need to help her recover a puzzle on which she had been working. I am getting used to these interruptions and find that they don’t present a serious problem. It does, however, require shifting back and forth in order to satisfy her need for a change.