Welcome to Living With Alzheimer’s

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time. It includes the symptoms Kate has displayed as well as things we have done to cope with them. You will also learn about our frustrations and problems of which there have been many.

As of June 3, 2018, I had made 1319 journal entries, 983 of which have been uploaded to this site. In the days ahead, I will continue make new entries. I don’t have a regular schedule. I write them as new things occur. Sometimes I may not write anything for a day or so. Other days I may make two or three entries. In addition, I will continue to upload older posts that I have not yet read to see if they are suitable to be included on the site.

What may surprise you is how much we have been able to enjoy life and each other even as this disease takes a greater hold on us. We have been more fortunate than most couples who travel this road. On the other hand, if you are someone with dementia or if you are caring for someone with dementia, you will recognize many of the things we have in common.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

A Re-run of Last Night and More

On the way to lunch, Kate asked me my name. Nothing unusual about that. Then she asked her name. I said, “Kate Creighton.” She said, “Creighton? Where did that come from?” I told her she got that name when we married. She was surprised and said, “We’re married?” I told her we were and told her her full name in which I included her maiden name. She didn’t recognize it. I started telling her that was her family’s name as we arrived at the restaurant. When we got inside, I started explaining. Then she mentioned the name of one of her aunt’s. There was clearly a spark of recognition. At least one other time while we were eating, she asked my name again.

I mentioned something about our being married, and she said, “Do we have children?” I gave her their names and told her about them and their families including our grandchildren. It was like the first time she had ever heard about any of them.

When we got home, she asked, “Are you a cousin?” I said, “No.” She said, “A friend.” I said, “Yes, I like to think I am your best friend.” She said, “My husband?”

Another Marker

Last night before turning on another segment of Fiddler on the Roof, Kate went to our bathroom to brush her teeth. As she passed me in my chair, she said, “Are you my cousin? . . .My brother? I said, “Closer than that.” She couldn’t guess. I said, “I’m your husband.” She said humorously, “My husband? Oh, I am in trouble.”

Over the past few days, she has appeared to be forgetting that I am her husband. It is obvious now. She is clearly forgetting we are married. At the rate things are going, that will soon be forgotten; however, I don’t expect this to change her feeling for me.

One reason I feel this way is that she still retains a strong attachment to me. I am a major source of her security at the moment. I have observed this in her growing dependence on me. More specifically, she verbally expresses this dependence. For example, when I returned home to relieve the sitter yesterday afternoon, she told me she was glad to see me. Two separate times she added, “I feel good when I am with you. I feel safe.” I don’t fully understand what makes her say she feels safe, but she doesn’t know where she is or who are the people around her but me. She knows that I provide the answers to her questions and control where and when we go places. I have become her lifeline. I don’t think I need it, but that provides an additional reason for me to do the very best I can to care for her.

A Surprise in Our Name Game

Since we started living with Alzheimer’s, we (I) have experienced many ups and downs. Kate and I fortunate to have had far more of the former than the latter. I hope that comes through in my posts. Sometimes the downs surprise me because they are so unexpected. That was the case at lunch today.

Shortly after we were seated, Kate asked, “What is your name?” She had asked that several times while we were at Panera before leaving for lunch. Then she asked, “What is my name?” I told her, and she asked, “Where are we?” I told her we were in Knoxville. I said that because that is usually what she wants to know. She frowned. I had obviously misread her. Then I said, “We’re at Tupelo Grill .” She frowned again. I decided she must mean “Where is our house.” At first, I just told her the general area in which our house is located. That was closer to what she wanted. Then I gave her the address. That worked.

Except for the part about our address, this part of our game was pretty normal. Then it took a sharp turn. She said, “What do I do?” I said, “Well, you were a school librarian.” Her eyes lit up. She didn’t seem to have remembered that. Then I said, “What you enjoyed the most and did the longest was to serve as our church librarian. You served as a volunteer for 19 years, and you were very good at it.”

This failure to remember having been a librarian took me by surprise, and I felt one of those moments of sadness that come along more often now than I would like. It was one thing when she started having trouble with our children’s names. Then it was my name. She is now having trouble remembering her own name. Not remembering that she was a librarian is not just forgetting a label. This is forgetting a major part of her self-identity.

It is not surprising that this would happen at some point, but I hadn’t anticipated its coming this soon. Like the other things that she is forgetting, I know this was just a single moment. This might not happen again for a while. On the other hand, that is exactly how everything else has started, little slips that occur once in a while. Once this process begins, it doesn’t let up.

At least she’s not aware. (NOT)

Twenty years ago when my mother was living with dementia, I recall someone’s saying, “Well, at least she doesn’t know.” That was meant as a word of comfort suggesting that she would not have to experience the mental anguish that can accompany the disease. At the time, I felt that wasn’t right. I remember how frustrated she was when she couldn’t remember things or do things that she was once able to do.

I’ve  had much more opportunity to observe Kate, and I have confirmation that I was correct. During the last stage of the disease, people may not be aware of their impairment. For most of the way, however, they are quite aware of many things including their own failings.

Next Tuesday, it will be 7 years and 8 months since Kate’s diagnosis. She is still aware that she is unable to do all the things that she used to do. I don’t have to look far for examples. I checked on her a little before 9:30 and discovered that she was just getting out of bed. I was pleased since she has been sleeping much later. I went back to the kitchen without disturbing her. She likes to wake up slowly, and I thought it best not to rush her.

At 10:00, I went to our bathroom to brush my teeth. I noticed that she had picked up the clothes that I had laid out for her last night but left the top on her chair. At the time, she was in her room. I took the top to her. She was concentrating on her clothes, trying to make sure that she had everything she needed to wear before she got in the shower. I asked if I could help. She said, “I need something to wear.” I told her she had just about everything but a top and that I had it. She had laid the clothes out on her bed. She had the pants I had put out for her and an additional pair. Beside them she had one sock. She realized she didn’t have everything and was trying to figure out what else she needed. After I walked in, she decided to lay out her clothes on a chair next to the bed. She was confused by the fact that she had two tops. I told her I would take one of them and let her wear the other. She took one and put it on the chair. I started to leave the room, and she asked me to wait. She wanted to do this herself, but she wanted me there in case I she needed me. It took her a long time to do this. When she was finished, I said, “You’ve got it.” She gave me a doubtful look and said, “We’ll see.” She, too, knows there are times when she thought she had everything together only to discover she was wrong.

It is painful to watch her work so hard on what we would think to be a simple task, but I still like to give her a chance to do as much for herself as she can. She seems to appreciate this. One thing I do know. She does recognize she can’t do what she used to do, and it bothers her. There will no doubt be a time when she doesn’t.

In a Cheerful Light-Hearted Mood Yesterday

Kate got up on her own around 10:00 yesterday. We were too late for Panera but right on time for lunch. One of the first things she asked when we got in the car was, “What is your name – whoever you are?” I told her. She must have asked the same question another two or three times before we arrived at the restaurant. Although she had originally asked in a light-hearted way, she was clearly serious about not being able to remember it. I said, “I guess you remember that we are married.” She looked shocked, and said, “We are?” In a few minutes, she said, “I guess we have children.” I told her we did and then expected her to ask about them. Surprisingly, she didn’t.

We came back home after lunch, and Kate went right to our bedroom and napped for over an hour. When she got up, she was ready to go. We left for Barnes & Noble. We had been in the car only a minute or two when she asked my name and then where I was from. A few minutes after that, she said, “Do you know my name?” I told her. Before we arrived a Barnes & Noble, she asked my name again. She asked again at least two more times while we were seated. At one point, I was pretty sure that she was just playing games with me and that she really remembered my name. I am equally sure that most of the time she didn’t.

I received a phone call from a friend we see at Panera. She is in a Bible study group that meets on Tuesday mornings. We often chat briefly with her as well as the man who leads the group. She said that several people had asked about us. She specifically mentioned a man with whom I have had quite a few conversations over the past few years. I have his phone number and called him. I reassured him that we were all right but that Kate’s sleep pattern has been changing. I hope this won’t be the end of this friendship. It is not the same as longtime friends that you have gotten together with over the years, but it has been a meaningful relationship. I don’t want it to end.

Always Adapting

Every caregiver of a loved one with dementia knows it is helpful to adapt to the changes that confront us. I get that, but I don’t adapt at the first signs of change. In fact, I often work hard not to give in to the changes that are required. Giving in has its benefits though. The big one is that you don’t have to fret over the fact that what you want isn’t going to happen.

That’s my introduction to the change I made yesterday. You may have read one or two posts in the past few weeks that conveyed my desire for Kate to get up early on the days we have a sitter, especially on Monday when the sitter arrives at noon. I started our custom of going to Panera each morning so that Kate could get a muffin. As we became acquainted with the staff and some of the regulars, I felt the social encounters we had were good for her. It has been a time that the two of us could share a pleasant social experience that was easy for Kate.

Earlier this summer when she started sleeping later in the morning, we had less time for Panera and sometimes missed it altogether and went straight to lunch. That didn’t present a problem for Kate. She has never expressed any disappointment about missing her muffin, Panera, or the social experiences we had there. That wasn’t true for me, however. I had grown accustomed to spending one or two hours a morning with her in a social setting. I wasn’t even eating. I just had my coffee. The difficult part was giving up the social experience. Originally, I took Kate to Panerea for her, but, ultimately, I found it was as much or more for me.

Yesterday I decided I would not rush her, but I did make an attempt to wake her in time for me to take her to lunch at Panera. She had no interest in getting up, so I decided to let her sleep. I would just ask the sitter to take her to lunch for me. Having made that decision, I relaxed and went about my business. That is the big benefit of letting go. I’m not going to fret over this. From now on, we’ll go to Panera if she is up in time. Otherwise, I’ll let the sitter take her. By the way, as it turned out, Kate did get up in time for me to take her to lunch. It was almost 11:30 by then, so I called the sitter and asked her to meet us at Panera.

That only takes care of three days a week when the sitter comes. There are still four other days. There have been at least two or three days lately when we didn’t get to lunch until close to 2:00. Since I am usually up between 5:30 and 6:00, I eat an early breakfast. I’m ready for lunch between 11:30 and noon. It would be no problem to wait until 1:00, but 2:00 is stretching it. The most obvious solution to this problem is to keep something in the house to either substitute for my lunch with Kate or tide me over until then. I think I’ll just take this one day at a time. In the meantime, I’ve been snacking on a little granola. That seems to work for a limited time.

The Power of Music (Again)

Yesterday, Kate and I went to see our good friend, Ellen, who now lives in Nashville. Although I had to wake her, Kate got up, showered and dressed in an hour. That gave us time to get a quick lunch at Panera before we hit the road. We arrived in time for their Sunday afternoon ice cream. That was a little treat for us. In the past, we have always arrived later. That’s because we have frequently had lunch or a quick visit with our friends the Robinsons or Davises who also live in Nashville. I did not try to get together with them this time since I have been unsure about what time I would be able to get Kate ready. Going directly to Ellen’s avoided any pressure. This may become our regular routine.

Since Ellen was already in the dining area, we stayed there our entire two-hour visit. That has its pluses and minuses. Last time we had spent our visit in Ellen’s room. It is a nice room but a little darker than the common areas. We may split our time between the two next time.

This was our third visit to this particular facility since Ellen moved there in May. She had made the move after having a couple of seizures that, on top of the stroke she had three years ago this month, required greater care than she had needed previously. We were eager to see if there had been any change in her ability to speak. There had been a change, but it was not for the better.  We could understand very little of what she said. Of greater concern was that she didn’t try to talk as much. She was always a big talker. After her stroke, she continued to talk a lot. That was a natural part of her personality, but I believe it may also have related to the fact she has been so socially isolated. She had lived in Knoxville for over forty years and has lots of friends here. It is not so easy for them to travel to Nashville. I only know of one other couple who has visited her in the past three years.

The saddest part for me is that mentally Ellen is in much better shape than the most of the other residents. If she could only talk, she might be able to establish a relationship with a couple of them. That appears to be impossible at this point.

Remembering that on our last visit, the three of us had enjoyed listening to a little music on my phone, I went thinking that we might try it again. It turned out to be even better than last time. Then I just played a few pieces of music I thought she would like. This time I played a greater variety and played music for a longer time, a full thirty minutes. At a couple of points, I was a little concerned that I might be playing too much, but she said she was enjoying it.

It may seem strange to think of the three of us sitting together in the middle of a common area of a memory care facility listening to music from a phone, but for us it was a special moment. For a short period, one of other residents joined us, but she wanted the volume turned up, and it was already as high as it would go.

We stopped when it was nearing time for dinner. The last time we stayed during dinner we found that another resident dominated the conversation. Ellen was left out. Since Ellen gets so few social encounters with friends, I want to maximize our time with her. I’m already thinking about our next few visits. I may take our DVD of Les Miserables. Even though it is too long for us to play on a single visit, she could enjoy it the way Kate and I do at home, a little bit at a time. I may also take a Bluetooth speaker for either my phone or computer. There is a tremendous amount of music on YouTube I could play for her.

Knowing that both Kate and Ellen are declining, I am unsure how long we will be able to continue our visits. Until then, we’ll do just what we do at home, take it one step at a time.

Kate’s Intuitive Abilities Shine

Yesterday could have been just an ordinary day or, possibly, not as good as an ordinary day. As it turned out, it was a very good day. That wasn’t because Kate’s memory or confusion lessened at all. There were plenty of signs that her “rational” abilities continue on a downward slope.

She began the day slowly. I woke her up shortly after 11:30. She got ready for lunch rather quickly – just over an hour. On the way to lunch I played an album by The Kingston Trio, a popular musical group during our college days. I can’t remember the last time I had played it. I just thought it might appeal to Kate. She really enjoyed it.

When we got back home close to 3:00. Our housekeeper and her helper were in the midst of a major cleaning project. Fortunately, they had completed their work in the family room, so Kate and I hung out there. I played another Kingston Trio album. Kate picked up her “Big Sister” album that her brother Ken had given her in the spring. It’s a photo book that contains a large assortment of family pictures that begin at the time of her birth and goes through January of this year. She has enjoyed it immensely since receiving it.

She looked through it two times in succession. The first time I joined her as she turned from page to page adding her comments about the pictures. When I refer to her comments, I don’t mean the photos call back specific memories, at least not in terms of recalling specific facts. They are exclamatory. For example, “That’s a wonderful picture of Mother,” “Look at the way Daddy is looking at me,” “I love this picture,” or “Oh, there’s Nana.” There are a number of pictures that she singles out as favorites each time she goes through, most notably, the one of her and her brother on the cover.

She spent a good hour going through it the first time. Then she went through it a second time while I started to work on my earlier post. She couldn’t go through without expressing her reactions. This wasn’t like a silent reading of a book. She was enjoying what she saw and expressing it as she went along. That led her into talking about the two of us and how glad she was that I had become a part of the family. She mentioned what a good marriage we have had, the wonderful things we have done together, and how proud we are of our children. Then almost without skipping a beat, she asked, “What is your name?”

While she asks about names frequently, it seems like she is now focusing more specifically on my name and “Where are we?” This is a subtle difference, but I think she is losing her memory of things around her. Those are the things that are upper most in her mind. People and places that are far off simply drift out of her mind until something happens to bring them back like my mentioning our children or other friends. I’m always here, and we’re always in Knoxville. She can’t remember the names that seem most relevant at the moment and wants to know.

After finishing the book a second time, we went to dinner. When we returned home, I put on the Les Miserables DVD. We had seen most of it the two previous nights. This was icing on the cake for a day during which she had already enjoyed herself. I hope that as we go forward, she will continue to derive as much pleasure as she did yesterday. I’m going to be optimistic.

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.

Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.