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How My Dad Influenced My Approach to Caregiving

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.

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Changing Attire for Bed

Up until the past six months or so, Kate’s choices of things to wear to bed have been the same as they were throughout our marriage. She has always been very conventional. She has several night gowns as well as a collection of robes. Her general pattern was to put on a robe over a gown and read before going to bed. Then she would take off her robe when she went to bed. More recently, she has made a change.

This began several months ago when she would bring a robe, but no gown, into our bedroom. When I noticed this, I asked if she would like me to get her a gown. She would either say yes or tell me that she would get one. After this happened a few times, I started getting a gown in advance and putting on her side of the bed. She often chose to wear what I was selecting but sometimes ignored what I had brought. In those instances she would get a robe.

For a while, I continued to select a gown for her, but it appeared from what she actually wore to bed that she preferred to sleep in a robe. I asked her if there were something about a robe that she preferred over a gown. That was silly for me to ask. Naturally, she was unable to explain and didn’t want to talk about it.

Since then, she has been following a fairly consistent routine. She usually sleeps in a robe, but once in a while she picks out a gown. There have been a few times when she has slept in her clothes. Last night, however, she made another change. We had come back from opera night at Casa Bella around 9:15. She got ready for bed pretty quickly. I got her medications. She brushed her teeth. Then she undressed. Instead of getting a robe or a gown, she put on the cardigan sweater that she had worn over her top when we went to Casa Bella. As I often do, I am wondering where this is going.

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More Examples of Kate’s Memory Loss

This is a follow up to my previous post in which I noted some of the changes in Kate’s memory. Since then, I have observed several other examples. One occurred at lunch when she asked, “Does this place have a name?” This was at Carla’s Trattoria where we eat lunch once a week. This afternoon as we were leaving for her monthly massage she asked, “Are we still in Tennessee?” Of course, this is the correct answer, but the question showed she wasn’t sure. And we have lived here almost 47 years. This is much more a commentary on the weakness of her long-term memory as opposed to her short-term memory.

When I picked her up from her massage, we drove directly to get our haircuts. As we were leaving from getting our haircuts, I told her we had a little more than an hour before it would be time to leave for opera night at Casa Bella. I asked if she would like to go home or stop by Panera. She said she wanted something to eat. I suggested we go to Panera and get a bagel. That suited her. Just a few moments later, she asked where we were going. She had already forgotten.

Once at Panera, I selected a table and she went to the restroom before taking a seat that was in a different section of the restaurant. Knowing that she would not immediately find me, I stood up where I could see her, and she might see me. In a minute, I saw her. She was looking all around. She had absolutely no memory of where the table was. I waved my hand, and she noticed me. Then she gave me a dirty look and shook her head as she walked toward me. She was obviously annoyed that I hadn’t made it easier for her to find me.

That reminds me of something else. On several occasions recently, she has asked me to wait for her outside the restroom at a restaurant. Those are the first times I ever recall her doing that. That in itself shows a greater recognition that she won’t be able to find her way back to where we were sitting.

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Reflecting on Change

When Kate was diagnosed seven years ago, I did not expect that we would be as active as we are today. That is not because her condition has not changed since then. It has changed considerably. I don’t think I have always captured the changes as well as I might have. In preparation for creating this blog, I have re-read every entry posted in the Archives and have been surprised at how much of my description of Kate’s symptoms seem to be the same as they are today. For the most part, I believe that relates to what I would say is the lack of precision in the words I have used. For example, early on I made many references to problems with her short-term memory (STM). Today, I am saying the same thing; however, the changes between then and now are dramatic. If I had been able to use a mathematical scale (like doctors use when they ask patients the level of pain they are experiencing) instead of words, I might have been using numbers like 6, 7, or 8 where higher numbers indicate better STM. Today I would use numbers like 2 or 3 to reflect her STM.

To give you a better idea of what I mean, yesterday she asked me to tell her my name. I told her. She said she knew that. Then I asked her to tell me my middle name. She couldn’t do it. I told her. Less than a minute later, she could not recall it.

Her long-term memory (LTM) was still pretty good at the time of her diagnosis. It has gradually gotten worse over time. As far back as 3-4 years, I was aware that she was slipping on details about family events that had been important to her. Until the past six months or so, she talked a lot about her mother and her family. She is not doing that now. I think it is because they are fading from her memory. When I mention them to her, she responds very generally that conveys she remembers these past events. She does not say anything else about them.

In recent weeks, she has more frequently asked me to tell her names of people (including our children, grandchildren, and me). She also asks me to tell her “where we are.” Sometimes she is asking the name of the restaurant in which we are eating. More often she means, “What city are we in?” While at Panera two times this past week, she asked, “Does this place have a name?” As we were leaving Panera this morning, she asked, “Where are we?” I told her. Then she asked, “What state is it in?” These questions represent significant changes from even last year.

If I had known these symptoms seven years ago, I might have underestimated how much we can still enjoy ourselves. It saddens me to know how little memory she has now. At the same time, I am encouraged by the pleasure we get out of life. Tonight is Opera Night at Casa Bella. We will sit with the same people we have sat with the entire four or five years we have been going. Kate doesn’t remember their names and couldn’t tell you anything about them if you asked. On the other hand, she will feel comfortable with them even if she doesn’t say much. On top of that, she will love the music. How grateful I am for that. I know that, too, will change, but I am optimistic that will be a while.

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Some things change. Some things haven’t.

I tend to focus on the changes that are going on in our lives, but it strikes me that there are some things that continue. I was reminded of that this morning when I went to the back of the house to tell Kate that the service man from our heating and cooling service was in the house. When I got to the door of the room, I spoke her name. She screamed. I had frightened her in a way that I have not done in a long time. It wasn’t long after her diagnosis that I first became aware of how easily she can be frightened. That led to my announcing my presence as I came in the door whenever I had been out. These days I am with her except for those days she has a sitter, so I haven’t thought as much about startling her in quite a while.

It is not just around the house that she is startled. This frequently happens when we are in restaurants. A couple of days ago at Barnes & Noble, two women walked by our table. As they did, one of them dropped her keys. Kate jumped and made a sound  that was loud enough for the women to hear. That brought an apology from the one who dropped the keys. As much as Kate loves children, she is sometimes  bothered by their high pitched voices.

One of the other things that has annoyed Kate is the music played in restaurants. This may have been a problem for her before Alzheimer’s, but I don’t recall her making an issue of it the way she does now.

She still has Déjà vu experiences although I don’t think I have heard her mention anything in the past few weeks. Maybe that is something that is changing rather than a constant.

Her use of hand signals began one or two years ago. For example, instead of asking me if she should take her iPad with us when we go out, she might point to her iPad and then point in the direction of the garage. Similarly, if we have our own cups in the car when we get to a restaurant, she often points to her cup and then to the restaurant. In the evening, she often brings a robe into our bedroom and points at the robe and then to herself and then to her chair or the bed. I don’t always read her signals correctly, but she rarely helps me out with words. Of course, usually I know what she is asking.