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My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

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So, What’s Going On?

Some of you may have noticed that yesterday’s post came after a week of silence. That is the longest such period since I launched the blog 2 ½ years ago. Because of my regularity in the past, I know some of you have wondered if everything is all right. I am happy to report that Kate hasn’t had any special problems. In most ways, she has had a good week. She does experience more delusions and hallucinations than she used to, but they haven’t increased in the past seven days.

The real answer is that I have been more occupied than usual. Our children and grandchildren were in town Thursday through Sunday to celebrate my 80th birthday. We had established this date before Covid-19 entered the picture. We did our best to maintain the appropriate physical distance recommendations but were together a lot during that time.

Prior to their visit, I began to make preparations for the move. Mostly, that has involved getting the house ready to be put on the market in December or January. We’ve been in the house 23 years this month, and there are several things that require attention. The biggest is eliminating a leak in the swimming pool. After a year of searching, we found it two weeks ago. I asked that they not begin until after the birthday celebration. They will be here next Tuesday. In addition, I have also been communicating with a number of people about gutter and woodwork repair.

I also felt a need to take action on the preparations for the move itself. I know someone in connection with my work with United Way whose business is helping seniors who are downsizing. She is also helping a few others who are moving into the same building we are. Several times, I had spoken informally with her, but we finally met at our house earlier this week. She can handle almost everything in connection with a move. For us, she will probably focus on the logistics of the move itself.

The first step in getting ready is to identify what we can take with us. I have contacted the person Kate worked with on the interior decoration of our present home. She is going to meet me at the house next Tuesday. In advance of that, I have been carefully reviewing the floor plan of our apartment. That has given me a general idea of what I can take with me. I will work with our decorator to get more specific. Then we well develop a plan to get rid of the rest.

All of these things together with my responsibilities for Kate have just made it more difficult keep up with my regular posts. I hope that won’t continue. Having set things in motion, I will develop a plan that I hope will be carried out gradually. The people I’m working with will play a large role in making the move easier for me. I also hope we won’t move until February or March. I know there will be unforeseen bumps along the way, but I am currently optimistic. As Kate often says, “We’ll see.”

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Cards, Anyone?

At 4:00 this morning, I got out of bed for a bathroom break. As sometimes happens, I didn’t go back to sleep immediately. Shortly after 5:00, we had the following conversation.

Kate: “Hey. <pause> Hey, where are the tards?”
Richard: “The what?”
Kate: “The tards.”
Richard: I took a guess. “The cards?”
Kate: “Yes.”
Richard: “They’re in the living room.”
Kate: “Well, get them.”

I went to the living room, located them in a drawer of the secretary and brought them back to bed. I handed them to her. In the dimness of the nightlight from the bathroom, she amazed me by easily opening the box and removing the deck of cards. Then she took the top card, placed it on the bed between us and said, “Your turn.” I said, “I don’t have any cards.” She took about half the deck of cards and handed them to me. I placed a card on top of hers. Then she said, “Something’s wrong.” She didn’t say or do anything else. She had closed her eyes. I said, “Well, I think it’s time to go back to sleep.” She was already gone. Our conversation and our card game were over.

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Art Appreciation and Kate

Many times I have given examples of Kate’s interest in “things of beauty.” Most often, this has involved all the “green” (principally trees, but also shrubs) she sees wherever we are, at home or on the road. It also includes the paper doilies she occasionally brings home from one of the restaurants we frequent. She keeps them in several places in the house. About half a dozen are on her bedside table where she enjoys them when she wakes up in the morning.

I have been able to appreciate what she sees in each of these things, but once in a while she surprises me. She did that just before the sitter came yesterday. I was seated across the room from her when I heard her say, “This is beautiful.” I thought she might be talking about the orchid plant on the table next to her. When I looked, I discovered that she was entranced by the remote control for the TV.

For years, I have had a periodic discussion about art with my two email friends from college, Tom Robinson and Bruce Morton. Tom is a retired philosophy professor, and Bruce started on his PhD in philosophy before developing other interests, one of which is photography. Our discussions revolve around the same question. “What is art?” I have always held the position that art, like beauty, is in the eye of the beholder. I know mine is a pretty loose definition, but it seems to work for me given the variety of creations that are officially called art and displayed in the world’s finest museums.

The beauty Kate saw in the cable TV remote was something of a stretch even for me, but I hold to my position. In fact, I think it’s an excellent example. Most, if not all art, seems to possess qualities that involve color, shape, texture, and subject matter. When I took a more careful look at the remote, I began to consider these qualities. I could see how she looked at it as a thing of beauty. It has forty-four individual buttons of different shapes, sizes, and colors and organized around different functions. The mount on which these buttons are located is a reasonably attractive shape and presents a contrasting color for the buttons themselves.

Yes, I think the remote is, or could be called, a work of art. I am sure that it’s designers would agree. They no doubt spent a long time working to make it both functional and attractive . It’s really an iconic symbol of our time. If someone like an Andy Warhol were to have painted a “portrait” of one in much the same way he painted the Campbell soup can, surely many would see if as art. I know I’ve seen stranger things at museums like MOMA in New York.

Of course, I am just playing fun and games with this topic, but there is a serious side to it. That involves the ability of people with dementia to see and appreciate things that most of us overlook. Kate’s life is filled with those. Wherever we go, she sees things that catch her attention. It is usually for something more understandable than a remote control, but also something that I was about to walk by without appreciating. Increasingly, I have come to believe that in the absence of her rational abilities, her ability to sense the world around her has increased to compensate for that loss. There may be a lesson in this for all of us without dementia. It’s a wonderful world, especially when we stop and consider the little things we take for granted. They may be of greater value than we thought.

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Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

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Looking Ahead and Making Changes

During the course of Kate’s illness, I’ve always tried to anticipate the future and make necessary preparations. With her changes over the past few months, I’ve been doing a few things that I have held off for some time. The biggest one involves the yard. A year or two after Kate began her “extreme pruning” activity, I began to wonder about the long term impact it would have on the shrubbery. At first, I thought it might be beneficial, but it would come at a time when she could no longer appreciate it. It wasn’t long after that when I suspected the shrubs might be permanently damaged. At the time, she had three things that occupied her time – pruning (“pulling leaves”), editing photos for a photo book on her computer, and working jigsaw puzzles on her iPad. Pulling leaves was her major activity when weather permitted. She could spend as long as 6-8 hours a day in the yard. Because she seemed to enjoy it so much, I made a conscious decision to let her pull leaves as much as she wanted even if it meant having to replace the shrubbery.

When this past spring arrived, it became clear that most, if not all, of the shrubs would have to be replaced. I didn’t want to move too quickly. I thought it might bother Kate. I didn’t want her to feel guilty. I realized she might never make the connection between her pruning and the demise of her shrubs. On the other hand, I didn’t want to risk it. Two or three months ago, I hired someone to start the project. I wanted it to be gradual so that Kate wouldn’t notice. He began by cleaning out the weeds. That’s been a big job. He is still working on that. He has another fulltime job, so he only works on Saturday. Along the way he has taken out four or five good sized shrubs. There are probably another twenty that will have to go. I think we should have the clean up done in the fall. Then we will look at planting new shrubs.

I have been surprised that Kate has had no reaction at all. She has seen the man and his wife working in the shrubs and hasn’t expressed either interest or irritation that I’ve initiated this without consulting with her. In addition to the cleaning out the flower beds, I asked them to use Kate’s existing pots for plants on our patio. I told Kate this was an anniversary present. I had hoped that she might take an interest and enjoy tending to potted plants as she has done in the past. This was an idea that flopped. It turns out that I am the one who tends to them. I really hadn’t wanted that, but that may be good therapy for me

For a long time, I have felt the need to do some serious work to the inside and outside of the house itself. I recently had all of the windows replaced. The next job is painting the outside. I’m going to wait until fall for that.

Our housekeeper passed away in April. Her daughter filled in for her until the end of July. Through a friend I found someone else. She started yesterday with a deep cleaning of the entire inside of the house. She brought a helper, and the two of them worked twelve hours. Like most people, we’ve accumulated a lot of “stuff” that we never use. I’ve spoken with her about helping me clean out a lot of these things. Chief among those are clothes that Kate will never wear again. Most of these are too small for her now. I’m going to feel better when we get organized again.

These changes are a direct result of the changes in Kate’s condition. I wanted to allow her to continue to be the one in charge of the house. That has been her role in the past. Of course, I recognize that I have gradually come to be the one to assume that role, but I haven’t wanted to do anything that I thought she might not like. At this point, I don’t think she will even notice much of what is done. A couple of years ago, I took out the tall entertainment center and the 42-inch TV in our bedroom and replaced it with a much lower cabinet with a 65-inch TV on top. I don’t think she ever realized the change. She never commented on it. By now, of course, she would not remember at all.

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Running behind this morning.

It’s a beautiful day today. I woke up at 5:20, a good time for a summer walk of 3.4 miles, cooled off in the pool for 20 minutes, and had breakfast. You might think I had plenty of time to write another post, but somehow I haven’t done it.

This is another morning when Kate would have liked sleeping longer. I woke her at 9:45 so that we could be ready to have lunch with two church friends at noon. We are to pick up one of them at 11:30. Fortunately, Kate got up quickly. She’s a real trouper. She was ready early enough for us to make a stop by Panera for her muffin and a little relaxation before we leave here in about thirty minutes. I am always relieved when I don’t have to rush her.

We have another engagement later this afternoon, so I will be out of touch most of the day. When I have a moment, I will try to catch up on our day yesterday. Fortunately, I don’t have anything unpleasant to report.

Wishing everyone a great day.

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Little Things

As we were getting our things together to leave for Panera this morning, I told Kate that I would get her iPad if she would get her cup. This is a fairly routine moment each day. The exception is when she is in a hurry. Then she goes directly to the car and waits for me to get everything. For the second day in a row, she couldn’t think where the cups are located. I don’t every recall her having that experience before. At various times during the day, she frequently goes to the cabinet and gets a cup. It’s a little thing but another marker in her journey.

When we pulled out of the driveway, she said, “What is the name of this street?” That is the first time she has asked that. Based on other things she has forgotten, I suspect she has had trouble remembering the name of our street for quite a while. Then she waved to the neighbors’ houses and said, “Bye, whoever you are.” That is a very common thing for her to do. She hasn’t remember their names for a long time. I find it cute the way the way she says it. She intends to be funny. She doesn’t think either of us knows their names. She sometimes says, “Bye, even if we don’t know your names.”

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Kate, Always the English Teacher

At the time of Kate’s diagnosis, we were told that her greatest strengths were likely to stick with her the longest while her weaknesses would deteriorate more quickly. That has proven to be true for her. She has always been geographically challenged. Getting lost when driving to places that should have been familiar was an early sign of a problem. Among her greatest strengths is an ability to handle herself in a variety of social situations with different types of people. I have mentioned many times how well she gets along when we are around friends and strangers. Even when she can’t remember people, she is able to engage in brief conversations as if she did. That has enabled us to remain socially active longer than I expected.

There is another strength that I’ve never mentioned. It is also one that hasn’t disappeared. She got her bachelor’s and master’s degrees in English and taught English for three years before taking a break when our children were born. When they were school age she completed a master’s in library science. Throughout her career, she has always thought of herself as an English teacher. Our grandchildren could testify to that. They have been corrected by “Nan” concerning their use of the English language many times.

She doesn’t limit her corrections to the grandchildren. I am often called to task as well. Even now, she frequently corrects me about one thing or another. If she were reading my writing I know she would have many edits. These days her corrections usually involve my use of specific words that she believes do not capture precisely what I intended or should have said. For example, this morning after she remembered someone’s name, I said, “You’re right.” She said, “I am right sometimes.” Thinking I was supporting her, I said, “You are frequently right.” Then she responded. “It would have been better if you had said, “usually.” I said, “You’re right again.”

I make a point of this because it’s a good illustration of how much her brain is still working and working correctly. Once in a while she says something that surprises both of us. When that happens, she sometimes says, “Don’t count me out yet.” The most appropriate response is, “I won’t.” I know, however, there are many times when I don’t think she will remember something or be able to perform some task. The easy thing is to believe is that she can’t remember anything, do anything, or understand anything. It’s much harder to recognize that even this long after her diagnosis (7 years this past January), she still possesses a good bit of knowledge and skill. I think I’m very good when it comes to recognizing this intellectually. I need to work harder to put that knowledge into action as I care for her during this most challenging time of her life.

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We’re back at Barnes & Noble

It’s a little over an hour after my postscript to the previous message. We spent a pleasant 45 minutes in the family room while she worked on her iPad, and I folded the clean clothes. Then she was ready for a change. Before leaving the house, she went to her room for something. When she returned, she had put on a new top over the one she was already wearing and carrying a heavy cotton robe and a pair of shoes. As she walked by the coffee table, she picked up a wash cloth I had just folded. I didn’t say anything. I just waited to see if she were planning to take them with her in the car. When we walked into the kitchen, I noticed that her top was on backwards and mentioned it to her. She took it off. Then it was inside out. She recognized that and started to fix it. Then she stopped and put it under her arm and picked up the robe, shoes, and wash cloth and took them to the car. I never asked why. I have done so on a few occasions, and she hasn’t been able to say. She didn’t bring them into Barnes & Noble. I would have said something if she had done that.