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Our Son’s Visit: Day One

Kevin arrived right on time yesterday morning. Kate had gotten up early enough that we were able to make it to Panera for her muffin and still be on time to meet him. We went straight to lunch and then came back to the house for the afternoon. A number of years ago, Kate’s brother, Ken, when through Kate’s father’s photo albums and scanned many of them. I put together three different slide shows from some of those, and the three of us watched them. It was fun to see the pictures of her aunts and uncles when they were the young married part of the family. It also included many photos of Kate and Ken as well as their cousins. We had seen many of these pictures before, but it had been a while. I always enjoy seeing Kate when she is really engaged and obviously deriving so much pleasure.

We went to Antonio’s for dinner. It has been quite a while since we had eaten there. Kevin had expressed an interest in going. We all had a good time, and I had the best Chilean Sea Bass I’ve ever had. We just might have to go again soon.

We’re looking forward to another nice day.

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More Forgetting and Confusion

Our son, Kevin, arrives from Texas today. Since he learned about Kate’s diagnosis, he has visited us two or three times a year. Each time, he comes without his family and stays several days. That has enabled him to devote more time to be with Kate and see for himself how she’s doing. During each of his previous visits, he has felt good about how well she is getting along. He calls frequently, and I have been very open with him and our daughter. He is aware of how much her memory has declined. It is quite possible, however, that he may not observe any radical difference since we were with him and his family in January.

The reality is that she has experienced notable changes since his last visit in Knoxville this past September. I notice differences more than ever. One of those is her frequent asking me for the names of people and places. She seems to be developing a comfort level in expressing her difficulty remembering things. I suspect that she has had this problem for longer than I am aware because previously she didn’t ask for help recalling names. She is obviously working hard to remember them.

She has become very open about not knowing where she is at any given time. Frequently, wants to know what city we are in. Other times, it is the name of one of the restaurants we frequent so often. Several times over the past few days, I have mentioned that “our son will be with us on Saturday.” Each time she has paused a moment and then asked, “What is his name?” Yesterday she asked about his family. She couldn’t remember the names of any of them. I went through the names of each one, but recognized that she won’t remember them.

As I said in a post a few weeks ago, connecting the name with a person is one of the most superficial levels of knowing a person. I am confident that when she sees Kevin today, she will know exactly who he is. I also know that for someone with Alzheimer’s forgetting names is a first step in the process of not remembering the person. That makes me sad. It also makes me wonder when I will discover that she no longer remembers me.

Memory problems are not the only signs of change that I am observing. She also shows more confusion. She has greater difficulty putting her clothes on properly. Very often she puts her clothes on inside out or backwards. When we arrived at Panera yesterday, I noticed that she was wearing shoes that didn’t match. I didn’t say anything to her about it. I didn’t think it was that important. Before we went to dinner, I did mention it. She looked down at her feet. At first, she didn’t notice that she was wearing two different shoes. Then she said, “You’re right.” She went to change shoes. When she returned, she hadn’t changed shoes at all.

As we left the restaurant, I said something about being near our first house in Knoxville and also the house where Ellen had lived before her stroke two and a half years ago. I told her I would drive by both houses. I also said something about how long we had lived here. She then asked me if we were in Fort Worth.  I reminded her that we live in Knoxville.

Months ago I reported that she almost always asked me if she could work in the yard when we came home. That has gone away since she hasn’t been working in the yard. She is doing something similar. She seems to be unsure about doing things that one would not expect to be unsure of. For example, when we came home from lunch yesterday, she pointed to the bathroom off the laundry room. She was asking if she could use the bathroom. When we arrived at the restaurant tonight, she asked if she should take her cup with her. I told her they would have glasses for us. Just before leaving a restaurant the other night, she asked if she should take her glass with her or leave it on the table. Last night at dinner she asked (again with hand signals) if she could drink her Dr. Pepper. All off these things suggest that she is confused as to what is the right thing to do, and she is looking to me for guidance. She is more confused than I had guessed.

Despite that confusion, we ran into three couples from our church at dinner last night. She was able to greet them as easily and naturally as if she didn’t have Alzheimer’s. That seems to be well ingrained in her. I hope that continues for much longer.

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A Little Irish Music

Last night we went to Casa Bella for Broadway Night. Since tomorrow is St. Patrick’s Day, the program featured Irish Music rather than Broadway. I went not knowing exactly what to expect and how much of the music I would recognize. I was surprised to discover that I recognized all but two of the songs. They were almost all Irish ballads that were familiar to those in the audience who are our age. That was the majority. They opened with “Peg ‘O My Heart,” following by “Danny Boy,” “How Are Things in Glocca Morra,” and “When Irish Eyes are Smiling.”

Once again, the singers were very good. We enjoyed all the music as well as the people with whom we sit. These musical nights have become very important for both Kate and me. I don’t yet see any signs they are becoming any less so. That was a great way to close our day.

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Sleeping Late Again

In recent weeks I have noted that Kate has been sleeping later that has been her custom for quite a while. In the past few days, however, she has been getting up at what I would consider an ideal time, around 9:00. That gives her what has usually been an adequate amount of sleep, 12-13 hours. It also gives me time to take care of a few things before she is awake.

Just when I thought she might be establishing a new pattern, she changed again. This morning, she was still in bed at 9:15. I checked on her a little later and discovered that she had gotten up from our bed and gone back to sleep in her room. Just before 11:00, I checked once again. She was back in our bed. At 11:25, she had gotten up and was making up the bed. Then she went to take a shower and dress. It was getting close to 1:00 when we got to Panera for lunch. I felt a little pushed because she had an appointment for a facial at 2:00. I tried not to rush her. I must have been successful because she didn’t express any irritation or have a panic attack. A couple of times she did say, “Just a minute” when I checked to see if she were ready.

As a caregiver, I am always trying to determine what, if anything, Kate’s current behavior signals for the future. In this case, I know that people with dementia require more sleep as the disease progresses. Sooner or later, I know that might happen with Kate. Am I seeing the first signs of this change? Is this judge a random shift from her regular sleep habits? Is there something else that I haven’t identified that might be causing the change? At the moment, I would answer “I don’t know” for each question. Because I am seeing so many other signs of change, I suspect this is part of a normal progression, and that will gradually sleep more than she used to. I will be looking closely to see if there is another explanation.

I had already been avoiding any commitments in the morning. Just last week, I changed the location of her next doctor’s appointment to a less convenient office so that she could see him in the afternoon. I will continue to be more rigid about this in the future. It will be easier for both of us.

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Caregiving, Stress, and How I Deal With It (Part 1)

Since Kate’s diagnosis, I have read a lot of things written about caregiver stress. Some of this has come from books written by caregivers. Some comes from a variety of online support groups and blogs as well as reports in the media. It is clear to me that the message is out. I can tell that by how often friends ask me how I am managing.

It is clear that caregiving can take its toll. My father cared for my mother who had an undiagnosed form of dementia. He cared for her without any help except on Wednesday mornings when he went to Kiwanis and then ran a few errands. He left her at a senior daycare center during that 4-hour period. I don’t recall his complaining or saying anything about the stress he was under. I was quite aware, however, that it had an impact on him. During the last year or two of her life, he wasn’t as upbeat as he usually was. After she died, he bounced back. It was then I realized the stress he had been under.

Beyond that, Kate and I were involved with care for all four of our parents over a period of 23 consecutive years. Kate’s mother lived with us the last 5 years and 3 months of her life. During that time, she had round-the-clock care by a team of 6-7 paid caregivers. Kate was diagnosed 2 years before my dad died. That means I have been involved directly or indirectly with caregiving for 28 consecutive years.

Until Kate was diagnosed, I didn’t put much thought into ways that I might minimize stress. My initial focus was a joint one. We wanted to take advantage of our time together. That meant we had to make every moment count. I am satisfied that we have done that and continue to do so although life is different now.

As Kate’s condition progressed, I began to think more about stress. I can’t remember the earliest time that I consciously took it seriously, but very early on I began to initiate several changes in my own life to prevent or minimize stress.

The first thing I did was to increase my exercise time. For over twenty years, I had been a regular at the Y although my professional travel meant that I wasn’t as frequent there as I wanted to be. As I was nearing retirement, I travelled less. That enabled me to be at the Y three mornings a week on a more regular basis. I arrived shortly before 7:00 and got to the office at 9:00. After her diagnosis, I started walking in the neighborhood the other four mornings of the week. I developed three different routes of varying lengths. The one I considered my default was almost exactly three miles, another two miles, and the third about a mile and a half. These days I still have three routes, but each is slightly shorter than the original ones.

As I began to feel uncomfortable leaving Kate alone, I have made some changes I felt were necessary. My major motivation for bringing in a sitter was to enable me to get to the Y. When I considered the most appropriate schedule for our situation, I decided to have the sitter come in the afternoon rather than the morning. That made for a double benefit on Monday because that would allow me to attend Rotary and then go to the Y. We started that schedule in September of this past year, and it has worked well. I have found, however, that sometimes I have other things like occasional United Way meetings that are usually on a Monday. When that happens, I sacrifice my time at the Y. To make up for that, I started walking every morning and going to the Y three days a week except when other things prevent it. Of course, there are always times when the weather is bad. I don’t walk in the rain, and I don’t walk when it is below 25 degrees.

You may wonder why I leave Kate to walk but won’t leave her when I go to the Y. That relates to our long-standing morning routines. Since Kate gave up her position as a librarian/media specialist at a local high school in 1990, I have almost always been gone when she gets up. She is very accustomed to being alone in the morning. She also gets going very slowly. That means she is not going anywhere soon after she wakes up. I only recall one or two times that she was up before I returned from my walk. I am gone anywhere between 30 and 48 minutes.  I do recognize leaving her is taking a calculated risk, but it is one with which I am still comfortable. I don’t know how long this will last. I’ll be ready to make a change when it looks like that would be best.

There are several other ways I tried to keep from being overcome by stress. I’ll address those in subsequent posts.

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What a Nice Day

At the end of my previous post I said that I thought it would be another good day. Of course, I didn’t really know, but all the indications were good. I am glad to report that everything went well. We left Panera for lunch about 11:30, and then returned home for about 45 minutes.

I had scheduled a rare staff meeting at my office at 1:30. Since our sitter is in New York today, I invited Kate along and told her she could work on her iPad in my office during our meeting. Our current staff consists of three people who have been with me over thirty years, and it’s been a good while since Kate had seen them. I was surprised that she didn’t ask me to help her remember their names during our drive to the office. Perhaps she hadn’t remembered where we were going, just that we were going out. I believe that is true most of the time we go places.

When we got there, we must have had 20-30 minutes of social time. After all, I only see them briefly when I stop by on my way to Rotary each week. I was glad to see that Kate very quickly got into a conversation with two of them while I was chatting with another. In a few minutes, we were all in a general conversation and enjoying ourselves. I saw Kate participate comfortably in a way that I don’t often see. I would say she was handling the situation remarkably well. Once again, I thought how fortunate it is that she has retained this gift of sociability even when her memory is gone.

The surprise came when I decided to start the meeting. I told Kate that she was welcome to join us but that she could also go to my office and work on her iPad. She decided to stay. She even spoke a little, especially at the end when she was very complimentary about these three who have been with me for so long. It pleased me no end.

When the meeting was over and we started down the stairs, she said, “Where am I?” At first, I said, “Knoxville.” She said, “No, I know that.” Then I explained that we were at my office. How interesting that she could talk so comfortably with the staff and praise them for their ability to run the show and then immediately wonder where she was. This is just one more mystery. One thing was clear to me. She had enjoyed herself and handled herself beautifully. I left feeling really good.

From the office, we went directly to Barnes & Noble where we stayed two and a half hours before going to dinner. It was unusual, but today we didn’t see a single person we know. Kate didn’t take a break during the entire time we were there. She might have stayed longer if I hadn’t said it was time for dinner.
We had a good dinner and have spent a quiet evening together. She is now in bed, and I will join her in a few minutes. It’s been another good day.

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Our Morning Routine

It’s 10:40, and, naturally, we are at Panera. I am a creature of habit. That is no surprise to anyone who knows me well. That personal quirk coupled with Kate’s Alzheimer’s has made for an interesting few years. The good news for both of us is that I am also flexible when I have to be, and I have had to be. In fact, I look at much of the adapting that we have done in a humorous way. As someone with a few compulsive tendencies married to someone who is pretty much a polar opposite, I would say we have made it work quite well for what will be 55 years at the end of May. I consider that an excellent training as Kate’s caregiver.

After a period during which she has slept later than usual, she seems to be working back to what I hope is a normal pattern. She has been getting up around 9:00 and is ready for Panera around 10:00 or shortly thereafter. That gives me three and a half or four hours to get up, eat breakfast, take a walk, check email, take care of any household responsibilities, check Twitter, and work on this blog.

Kate used to get up earlier, go to the kitchen for juice and yogurt, and return to bed. For some reason, she gave that up recently. Now she sleeps later. When she gets up, she takes her shower and gets dressed. This goes on while I am in the kitchen which serves as my office. When she is ready, she walks into the kitchen. That is often when I first know that she is up. The funny thing is that when I say “she is ready,” I mean right now. The problem is that I am not. I am still dressed in my walking clothes and need to change for the day. It annoys her that I am not ready to leave that minute. There’s always a way to deal with a new issue like this. Now I periodically go back to our bedroom to check on her. At some point, I discover that she is no longer in bed. When that happens, I change clothes, get her medications and put them on the island in the kitchen with a glass of water, get her iPad and her cup along with my own cup to take with us to Panera. Then when she walks into the kitchen, all I have to do is close my computer and put it and her iPad in my computer bag. I can easily do that in less time than it takes for her to take her pills.

On those mornings when I am late in discovering that she is up, I have to rush getting dressed and gathering our things together. While I am doing that, she usually goes to the car and waits for me. Even on cold mornings, she usually forgets to wear a sweater or coat. Fortunately, she has never had to wait long. I pick up a coat for her along with the other items mentioned above, and we’re off.

She hasn’t always been in the position of waiting for me. That’s what adds a dimension of humor to the situation. Like other things, this has not been of great significance in the morning. If I apologize for keeping her waiting, she says, “You didn’t take too long.”

When we arrived at Panera this morning, I noticed a group of women were seated next to the table at which we usually sit. They come to Panera about once a week after their morning run. They are usually pretty loud. When they arrive before us, I try to find a table in a different location as I did today. I stayed near the table while Kate got a drink. I stood so that I could see her, and she would be able to see me. I knew she would not remember where I was. After getting her drink, she walked directly to our regular table. I walked over to get her. She was waiting calmly for me, and I noticed that she had taken my cup instead of hers. Her ability to distinguish things that are different has diminished as well. My cup is smaller and made of stainless steel. Her cup is a larger green plastic cup. They are just the same to her. Similarly, she often picks up my iPad thinking it is her own even though mine is a larger version with a keyboard. Naturally, I am going to be a little sensitive about this since she is usually eating a muffin. Inevitably, that means crumbs and oil on the keyboard and screen. I try not to let on that this bothers me, but sometimes I fail.

Kate always enjoys being around children. We sat by a couple with a toddler at the table beside us. She initiated a brief conversation with them just before they left. On the other side of our table sat a mother and  her two girls, one who is 4 and the other 2. Just watching children brightens Kate’s day. I think it’s going to be another good day for us.

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One Other Change That I Notice

Since my post yesterday afternoon, I remembered one other recent change in Kate’s behavior. She has become unusually sensitive to the music played in many restaurants and also sudden noises. I’m not sure if this has anything to do with her Alzheimer’s, but it is a very noticeable change from the past. This is not brand new. She began to be bothered by these things several years ago after her diagnosis. The difference now is the degree of sensitivity. It doesn’t take her long when we are in a restaurant to comment on the type of music being played. Again, it’s not just that she doesn’t like it. It’s that she seems so annoyed by it, almost like the reaction that some people have to the scraping of fingernails on a chalk board. (Is that still a problem in this age of digital technology?) Similarly, when we were at Barnes & Noble yesterday, the woman who was fixing the drinks in the café bumped a ceramic dish with something. The noise wasn’t that loud, but it was audible throughout the café. Kate responded physically and audibly. Almost all the other tables were taken. No one else seemed to notice. A little later, I bumped my stainless steel coffee cup against the table. No one else around us even responded at all. Kate certainly did. On at least one occasion recently, a young woman dropped her keys on the floor. Kate jerked and made a noise. The woman apologized. It was nothing for the rest of us, just Kate.

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A Brief Observation About Our Day

Before it ends, I want to say what a nice day we have had. Kate has been in a very good mood from the moment she got up. Except for her asking me people’s names, I could almost forget that she has Alzheimer’s. I’ll go to bed feeling good.

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Noticing Lots of Things

Since starting this journal in 2011, I have not kept a regular schedule for my entries. I write when something catches my attention. As I have looked back to the early years, I notice that I didn’t write nearly as often. I think that’s because Kate wasn’t experiencing as many changes. Our lives weren’t significantly different than they were before the diagnosis. Now there are so many things occurring that I find it impossible for me to remember them all.

That has been particularly true over the past few months. While I don’t know what life will be like in the next six to twelve months, I do have a distinct impression that Kate is going through a transition period. The most prominent sign of that is her forgetting close family and friends. It also includes a failure to recognize where she is. A year ago, she had difficulty remembering where we were when we traveled to another city like Asheville or Fort Worth. Now she doesn’t remember where she is when we are right here in Knoxville. As we drove to Chalupas for dinner last night, she asked, “Does this city have a name?” When I told her, she said, “I know that. It just slipped my mind.” Unlike the early days, she didn’t sound very frustrated that she hadn’t remembered.

As we left the restaurant, she asked, “Where are we right now.” I told her again that we were in Knoxville. Then I mentioned that we had lived here 47 years and that was much longer than we had lived any other place. She said, “What’s the name again?” Once more I told her. She repeated the name several times. About a mile down the road, she asked me to tell her again.

It’s not just people and places she is having trouble with. On the way to lunch yesterday, I commented on the seeing the first blossoms of Lady Banks roses. She said, “You’re going to have to tell me the names of all of the flowers later when I am more awake.” I felt a touch of sadness hearing her say this. She has always loved these roses and the other flowering trees and plants are be beginning to come out. What a shame to see her lose these memories.

Although I said she doesn’t seem to express a high degree of frustration when these things happen, she often says things like, “I know you get tired of my asking you.” That let’s me know that she recognizes that she keeps asking the same questions. I keep giving her the same answer, “That’s what I am here for. I want you to ask as often as you want to. Remember I am your ‘MM.’” That is the nickname she gave to me some time ago. It stands for “My Memory.”

One of the other changes that I have noticed is that she is more sentimental than she used to be. In the last few weeks, I have seen her with tears in her eyes several times. This is a rather dramatic change from the past. She has never been one to cry. Since her diagnosis, two different types of situations have brought her to tears. At first, it was the panic attacks she had when I was trying to get her to hurry to get someplace. I quickly adapted by trying to avoid any time deadlines, when possible. On several occasions, when we might have to rush to get to a concert, I would simply choose not to attend. For quite a while, I have tried not to schedule anything in the morning. Now I have become more rigid. I don’t schedule anything before noon. I even changed the office we go to for her doctor’s appointments. Now we go to one on the other side of town so that she could have afternoon appointments.

Her recent tears have occurred when thinking of good things that have touched her. One of those is music. The other is her family. As her memory of other things began to fade, she talked a lot about her family. That was particularly common when we were with friends. I think that was because her memory made it difficult to remember everyday things like events in the news or other things that were happening with our friends. That interest in family continues but with a different twist. Now she talks with me about her parents and their families as well as our own immediate family.

Yesterday afternoon I mentioned something about a cousin of hers who recently passed away. That prompted her to reflect on her mother and father and then her aunts and uncles. Her father was one of eight children, so she had plenty of aunts and uncles. Six of them lived in Fort Worth where Kate grew up. Another lived a short distance away in Dallas. Only one lived out of state. That meant she had many childhood experiences with her larger family. As she talked, she got more sentimental. She kept saying, “That’s all I’m going to say.” A second later she would continue. Mostly she said the same things again. As she did, I could see the tears welling up in her eyes.

She seems to be working hard to hold on to what remains of her memory and her ability to handle life. One example is her asking me to tell her the names of people and friends. I can also tell that in moments when she has been quiet, she has been thinking of someone’s name. For example, yesterday in the car, she said, “Ken Franklin.” That is her brother. One other time she said her mother’s name. I asked if she had been trying to think of the name. She said, “I knew the name. It just wouldn’t come to me.”

She has always been careful to make up the bed every morning. She once told me that her mother had emphasized that was something she should always do right away. Two or three years ago, she stopped. Recently, she has started again. She doesn’t do it perfectly. The important thing is that she does it. I see it as another effort to take control of some aspects of her life.

She has become so open about not remembering names that I did something I have avoided doing until today. Without her asking, I asked her if she knew what city we were in. She said very calmly without conveying any sense of being troubled, “No.” I told her once again, “We live in Knoxville.”