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A Thought on Caregiving

At lunch with the Greens the other day, Angela told me a story of how a friend who was a caregiver for his aunt dealt with a situation all caregivers for people with dementia (PWD) face, what to do when your loved one keeps asking the same question over and over. She said he made signs that he could hold up and show his aunt. I said, “That sounds like something done for the convenience of the caregiver and not the PWD.” She went on to explain that she had heard that having a visual helps the PWD to remember.

Having reflected on this a bit, this approach misses something important. From my perspective, one of my pleasures is being able to help Kate with something that she either can’t do or finds difficult or inconvenient to do. Every time she asks me someone’s name, where we are, or anything else she has forgotten, she gives me an opportunity to do something for her.

I believe one of my greatest privileges is to walk with Kate through these last chapters of her life. I intend to keep answering her questions and to do it happily. These are things she wants to know, and I am glad to tell her. It will be sad day when she no longer asks me questions.

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Our Fifty-fifth Anniversary

Kate and I married 55 years ago today. Like every young couple, we began with somewhat vague hopes and dreams. All we really knew was that we were in love. We could never have imagined all that lay ahead. The good news is our dreams have come true. I don’t mean in any specific way. What I mean is that our love is deeper now than every before and that are lives have not only been enriched by our experiences but by sharing them together.

Life is much different now. Kate hasn’t been able to remember birthdays or anniversaries for several years. I have talked about this anniversary several weeks. She has never been able to remember it. That sounds sad, and it is; however, neither of us is feeling sad this morning. Kate is living in the moment. As usual, she is happy with this moment. We’re on our way to Asheville where we have celebrated quite a few anniversaries. We’ll stay at the same hotel where we have stayed for the past 15 years or so. We’ll eat at the same restaurants. We’ll enjoy our time together. Kate won’t remember it, but I will. She has little or no memory, but she is still able to enjoy living through her senses. I am thankful for that. Most of all, however, even though she is forgetting my name, she still expresses her love for me as I do for her. Who would have thought that this far into Alzheimer’s life could be so rewarding. We are fortunate people.

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How long can she remember? Not long.

Somewhere I read that a person in the later stages of dementia can only remember something for 3 seconds. Based on my experience with Kate, that sounds about right. For example, at Panera this morning, she asked me to tell her my “real” name. I asked if she meant my first name. That was the one she wanted. After I told her, she wanted the middle and last names. I gave them to her and then repeated the first, middle, and last names. Then she said the three names. She started to repeat them again but could only get my first name. She tried again. She could get it, but it was difficult to get it right after saying it once. I’m just glad that she doesn’t appear to be overly concerned about it. I emphasize “overly” because she obviously is concerned or she wouldn’t keep asking my name, our childrens’ names, or the name of the city in which we live. She sometimes apologizes for asking again. I always tell her, “That’s why I’m here. You can ask me as many times as you want.”

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Good Times with Bitter Sweet Moments

Once again, I am happy to report that the balance of our day yesterday was as good as the start. After returning from lunch, Kate rested for a little over an hour. Then we went to a movie. This was a bit unusual in that it was a movie we had seen just last week, RBG. Kate hadn’t remembered it, but she had enjoyed it. Since we didn’t have any special Memorial Day plans, I decided to take her again. We liked it just as much the second time, and I appreciated the artistry with which the story was told even more than before.

As we were getting out of the car before the movie, she again asked my name, and I told her. She is so very natural when she asks me. She shows no sign of being bothered by having to ask nor does she seem to be concerned about hurting me. Other than the question itself, she doesn’t sound like we imagine a person with Alzheimer’s would sound just childlike.

While we were at lunch, I received two DVDs from Amazon. One was Fiddler on the Roof. The other was Les Miserables.  Last night we watched a portion of Fiddler. Although she was working puzzles on her iPad throughout the movie, she was following it and enjoying the music. I did as well. This is rather unusual since she hasn’t expressed much interest in TV programs or movies in a long time. It was a nice way to end the day.

Kate was already in bed as I pulled back the covers on my side to get in bed when she said, “Do I have a name?” I told her she did and went over to her side of the bed, sat down and told her. I said that she had a special name because it was a family name. That prompted her to say how much she loved all her aunts and uncles. She was in one of her talkative moods again. She started to talk about our relationship. She has a set of things she recites. She is glad we met and how fortunate that we have been. Last night she also talked about how comfortable she is when she is with me and how easy it is for her to say things to me.

I continue to interpret her behavior in light of what I have read in The Dementia Handbook. The loss of her memory is dramatically expressed in her failure to recall names and facts, but her senses are alive. Every few minutes as we watched Fiddler, she would say something about what a good movie it is and how much she liked the music. More importantly to me, she still has special feelings about our relationship and me. And, as she has said, “I can’t even remember your name.”

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Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.

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Another First

A few minutes ago, I was standing beside the bed as Kate was getting into it. She said, “Are we married, or are we going to get married?” “I said, “We love each other. It seems we should be married.” She said, “Me too. Good night.”

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A Follow Up on Kate’s Dependence

In addition to the signs of Kate’s dependence I noted yesterday, there are several others I would like to mention. One of those is her telling me on two or three occasions recently, “I want to go wherever you go.” I am not sure but immediately wondered if she might be making reference to the times that I leave her with a sitter. Whatever she meant, it was clear that is looking to me for security.

There are daily variations on “going where you go.” For quite some time, she has wanted me to walk ahead of her when we enter a restaurant or other building because she never knows where we are headed. When we returned home from dinner last night, she said, “I’ll follow you.” That is the second time recently that she has said that. Apparently, she didn’t immediately recognize our home and preferred to depend on me to know where she should go. Recently she asked me to wait for her right outside the restroom in a restaurant. Again, it was a matter of her not knowing how to get back to our table.

Another sign of dependence is the increase in the number of questions she asks. We are having more conversations like one that occurred at dinner last night. She began by asking my brother’s name, something she does occasionally. When I said told her Larry, she asked his last name. After that, she asked what he did for a career. I gave her a more complete answer than usual. She didn’t once tell me to stop or that I was giving her “too much information.” It seemed as though she were very seriously interested and trying understand what I was telling her. She was quiet for a few minutes. The she asked, “Where are we right now?” I said, “Do you mean this restaurant or the city?” She said, “The city.” I told her we were in Knoxville. She said, “So where we live.” I said, “Yes.” Then she asked, “Are we going to live here for the rest of our lives?” This surprised me because she has told so many people that we are moving to Texas. I answered her question by saying, “I’m not sure. I think that will depend on our health. If either of us should have any special health problems, that could lead to a move.” She seemed to accept that without a problem.

When she opens conversations like this, I feel a special closeness to her. Much of that arises from the fact that she doesn’t have anyone else with whom she can talk so personally. When we got into bed last night she was more talkative than usual. This conversation opened with her talking about how fortunate we are with respect to our marriage and our children. That led to her admiration for her mother and how much she had meant to so many people. Then she said, “I can’t even remember her name.” I told her and she said, “I know that. I just couldn’t call it right then.” I said, “Not to worry, I’m always here to help you.” Several years ago, she gave me the nickname “MM” for “My Memory.” I have found that she does not always remember that anymore. That doesn’t surprise me. She is slipping on my real name now. These are touching moments for me. She is so open, so authentic in these conversations. They remind me of what a great responsibility it is to be a caregiver for someone with dementia. They also remind me of how fortunate we are. I know many caregivers have to face far more struggles than we have. I feel for them.

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A Rare Moment

Over the past 2-3 years, Kate has lost her interest in television. I suspect that is because it’s too hard for her to follow. Until the past year or so, she sometimes turned on the Today Show in the morning. She rarely, if ever, turns the TV on these days. I record the PBS Newshour and watch it after we return home from dinner. She sits with me and works on her iPad. I sometimes watch Nature as well. When I do, she occasionally looks up and notices something that catches her eye. Otherwise, she devotes her attention to the puzzles on her iPad.

Thus, it is something of a rarity that we watched some of the Royal wedding that took place on Saturday. No, we didn’t get up at 4:00 a.m. I recorded an ETV/BBC recording that began at 9:00 a.m. After lunch, we watched the portion that involved the wedding itself. Prior to that Kate had been working on her iPad. She put it down when Harry and William took their places in the chapel and didn’t pick it up again until Harry and Meghan departed in their coach.

Neither of us is a follower of the Royals, but both of us took interest in this wedding. I can’t speak for Kate, but events like this have taken a different place in my life since her diagnosis. During the wedding I was reminded of the wedding vows we took that were very much the same ones as those of the Royal Couple. In particular, the words “in sickness and in health . . . till death do us part” were more meaningful now than at the time we said those same words in 1963. I trust that I am now and will continue to honor that commitment. I have no doubts that I will. It was a rare moment for us to be watching TV together and a touching one for me.

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A Little Thing (to me, that is)

Kate was sleeping so well this morning. She didn’t want to get up, yet she did so without complaint. Showers can be confusing and challenging in new places. With that in mind, I turned on the shower for her and heated the water to the temperature I know she likes. She sometimes expresses her emotion with somewhat heavier breathing and an audible, “Oh, oh, oh, . . .” After she had been in the shower a while, that is what I heard. I immediately thought that she might be having a problem turning off the water. I was right. I turned it off. She was so relieved and thanked me. After more than five minutes. Her breathing was still not back to normal. I could still hear her “Oh, oh, ohs.” I have learned from the past to let her gradually come back to normal. She just switched to “OK, OK, OK.” I looked around, and she said, “Just talking to myself.” I said, “Sometimes that helps.” She said, “Right now it does.” And it seems to be working though it hasn’t stopped.

As a caregiver, I am quite aware of the challenges I face. I am less mindful of those Kate faces. Incidents like this remind me. It is remarkable how well she usually gets along.

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She says she likes to be with me. That’s good; I Iike to be with her.

About thirty minutes ago, I got up from my chair in our bedroom where Kate and I were relaxing. As I started for the kitchen, she motioned me to come over to her. When I reached her, she said, “You know that I always prefer to be with you.” I instantly had a tinge of guilt for leaving her with the sitter this afternoon. I told her I always like to be with her too.” Then I said, “Sometimes I need to go to my Rotary club and to the Y.” She said, “I know you do and you should go. I just want you to know I like being with you.” I told her I appreciated that and reminded her that she had always been that way during our entire marriage. I did a lot of traveling. I never sensed that it bothered her at all. She always let me do what I needed to do in connection with my work responsibilities without making me feel guilty. It’s nice to see that is another way in which she hasn’t changed.