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 January 1, 2019, I had published 1318 journal entries 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

Lots of Little Things

It seems like each day is a little different now. Kate is much more emotional, dependent, and confused. The combination is making a difference in how much time I devote to tending to her needs. This morning was a good example.

After I was dressed and about to begin my daily morning routine, she wanted to go to the bathroom. I took her and got her back in bed. She seemed especially needy and held my hand going and coming. Several times she thanked me for helping her. As usual, she was confused about where she was. I explained that we were at home, but it didn’t sink in until she looked out the window at the back yard.

Once she was in bed, I told her I would be in the kitchen if she needed me. She didn’t want me to leave her. I asked if she would like me to get my laptop and sit in the chair beside the bed. She was relieved that I would do that. This is the time of morning that I get my breakfast, check the news, get in a little exercise by walking around the house listening to a book, and then tending to my blog. It’s not great problem to make the change in plans, but it is a good example of what is occurring more often than in the past.

Yesterday morning was a different kind of experience. I let her sleep until 11:00. Then I got her up to be ready for the sitter who was taking her to lunch at noon. As we were leaving the bathroom to get dressed, she got a sad look on her face and said, “Just think of all the people who have to go through all this (not sure what this meant) and don’t have all the things we have.” It is not unusual for her to express her feelings about people who are less fortunate than we are, but this was a much stronger expression of those same feelings. She began to cry. I tried to comfort her as I helped her get dressed. Then as we walked to the family room, I saw one of her family photo books and decided to divert her attention to it.

That worked well. She then focused on her family. The tears, however, didn’t stop, but they were now tears of joy. The sitter’s arrival distracted her again. The tears stopped. I told her I would be going to Rotary. She didn’t want me to leave. When I told her that Cindy would take her to lunch and that I would be back later, she was fine.

Kate has continues to pull her hair whenever she lies down. She often talks to me about how much she is accomplishing by doing this. For the first time, she explained that she was “getting all the thingies out.” I asked if she thought they were alive. She said, “I guess.” This is similar to her feeling that she has “bugs” in her teeth and on her body, especially between her toes.

As I have said before, life is different now.

Visits with Nashville Friends

The recognition that Kate is now entering the last stage of her Alzheimer’s motivates me to do what I can to maintain our longstanding friendships with out-of-town friends. With that in mind, Saturday we drove to Nashville to visit Ann and Jeff Davis. Our past visit had been a good one, and I was eager to see how this one would go. Although she didn’t remember them before our arrival, Kate accepted the fact that we were going to see them without any reluctance at all. A couple of times on the way (and after I had mentioned our visit again) she did ask me to remind her of who they were. She was never straight on that.

As on our previous trip, she was immediately taken with the flowers outside. Ann saw us and came out to greet us. Our greeting was as natural as ever. I think Kate felt completely at ease. We went to their sun room where we enjoyed catching up with them. Since our last visit, they had taken a Danube River cruise and also made a trip to Mexico for a Spanish immersion course. Our conversation was lively, and the two hours we spent with them went quickly.

Kate was less talkative this time. Some of that may have been because the rest of us talked so much. I know she could not have followed everything we said. Throughout our visit, I was concerned that she was uncomfortable. It was a surprise when we got in the car to hear her say she had enjoyed the visit. She didn’t say anything that would have given me the idea that she was ignored or bored.

My own reading of the situation is that she was confused by our conversation and may have been uncomfortable. She chose to remove herself from it, an easy way to adapt to a challenging situation. I suspect this is something that I am more likely to see in the future. It reminds me of my mom when she and dad were with us in any group. She was very quiet.

Our visit does make me think about ways that I could have brought Kate into the conversation. Much of our conversation related to our past experiences, something that is impossible for her to handle. She does, however, retain her feelings. She could talk about her feelings for her family, especially her family. She also retains a strong sense of social justice and the fact so many people live in underprivileged conditions. These are things that are easy for the two of us to discuss. It seems like it might be more contrived in a typical social get together like the one on Saturday. I am going to think about creative ways in which I might encourage at least some conversation on topics that we could all appreciate.

Staying overnight in Nashville has worked out well for us. We had a nice dinner the night before, and Kate was able to sleep late before our going to lunch and then visiting our friend Ellen at her memory care facility. Our visits with her continue to be challenging. We understood very little of what she said. In addition, her memory is also declining. Her daughter told me to ask about Ellen’s visit from her son’s family the previous weekend. They live out of state and don’t get to visit very often. When I asked, Ellen didn’t remember their coming at all.

A few weeks ago, we saw a woman from the church where Ellen directed the choir for forty years. She told us about several videos of her daughter singing solos with the choir. She had posted on YouTube. I played them for Ellen. That was a treat for her and for us.

For the third time in a row, we were there for the “music lady” who comes to the facility about twice a month. She plays the piano and sings and invites audience participation. The residents love her. I can see why. Kate and I enjoy her as well. Kate seemed a little more controlled in her expression of enthusiasm than the first time we were there, but she danced and sang a little as well as clapping her hands and swinging her arms with the music. She was enjoying herself so much that we stayed thirty minutes longer than I intended.

I feel good that we can still have weekends with visits like this at this point in our journey and plan to keep going as long as we can.

Transitioning from Husband to Helper

Kate surprised me yesterday when she got up early again. I reached her as she sat on the side of the bed. I asked if she was getting up. She said, “I don’t know.” We chatted briefly, and then I asked if she would like to get up. Again, she didn’t know. She said, “What do you think I should do?” I told her I thought it would be good for her to get up and take a shower. She asked where the bathroom was. I told her I would show her.

On the way she asked, “Who are you?” I told her I was Richard and could help her with anything she needed. She said, “You really seem to know your way around.” I turned on the shower and showed her the soap. As she got in the shower, she asked who I was. I said, “I am Richard, and I am your helper.” She asked what I did before becoming her helper. I told her I was retired. She said, “From what?” I told her I had been in the market research business. She said, “What’s that?” I explained briefly. As I closed the shower door, she thanked me. It didn’t sound the way she would have said it if she realized I was her husband. It was more like what you would expect if she thought I was a friend or hired helper. After her shower, she walked a few steps to the bedroom. I told her I would get an extra towel and help dry her. She said, “You really know everything.”

It wasn’t long before she wanted to lie down again. I started to leave for the kitchen. She said, “Why don’t you stay right here?” I said, “Would you feel better if I stayed with you?” She said she would, and I brought my laptop back to the bedroom. About thirty minutes later, she wanted to get up.

Once she was dressed, she wanted her shoes and socks. I picked them up from the floor near her feet. She said, “You think of everything.” Then she asked where I live. I said, “I live right here with you.”

Gradually she is failing to recognize me as her husband. I haven’t reached the stage of never telling her, but I am gradually changing with her. My obvious role is that of helper. I don’t think that’s a bad way for her to think of me.

I can’t prevent attacks of anxiety, but they don’t last.

When I went to the bedroom to wake Kate yesterday, I found that she was having another anxiety attack. She was frightened and looking around the room for something that seemed familiar. I recognized the problem without her saying anything. I said, “I’m sorry I didn’t know you were already awake. I’d like to help you if I can.” She said, “Where is my maybee?” I told her I didn’t understand. She realized she wasn’t using the right word and tried again. Then she said, “My mother.” I said, “I can tell you about your mother.” She said, “Do I have a mother? I want my mother.”

We talked a few minutes about her mother. Then she wanted to know where her clothes were. I brought her clothes to her and told her I would help her dress. I suggested that she first go to the bathroom. As we walked to the bathroom, she asked again about her clothes and said, “I see other people, and they all have clothes on. I want my clothes.” I said, “You are right. You’ll want your clothes when we go outside.” She said, “See. I’m smart.”

This was one of the many times I wish that I had recorded or could remember exactly what she said. I can only try to capture the sense of what happened. It is not unusual for her to tell me she is smart. Although sometimes she makes it clear that she wants me to understand that, I believe she is also telling herself that she is smart even though she recognizes her problems. In this particular conversation she commented on understanding a word I had used and also one that she had used herself. I don’t recall either one, but she said, “See, I remembered that.” She was also proud that she put her top on the right way.

When she was dressed, I told her I wanted to take her to lunch. She said, “I want to go home.” She says this occasionally when she wakes in the morning. I usually tell her she is at home, and she accepts that. Sometimes she doesn’t believe me, and I try to redirect her attention to something else. In this case, I told her I would take her home, but I wanted to show her something before we left.

Then I went through the same routine I had done the day before with photos of her family. Once again, she noticed Pepper, the ceramic cat, as well as the flowers on the patio. She asked if we could walk outside to get a better look. We took a few minutes to do that and then left for lunch. She no longer showed any signs of anxiety. She didn’t, however, know who I was. When she was dressing, she asked if I were her daddy. I told her I wasn’t and that I was her husband. She didn’t believe that. I said, “Let’s just say I’m a friend.” She liked that better.

On the way to lunch, I played an album of music by a group that had played the Four Seasons in Jersey Boys. She enjoyed the music and clapped her hands on her legs and also moved her hands around the way she might have done if she were dancing. She had a good time.

She was talkative at lunch. It wasn’t long before we began to talk about our relationship. She specifically said something about our being married. The rest of the lunch and the day went very well. She showed no anxiety or doubt about me and our relationship. I will say, however, she often slips back and forth between knowing our relationship and not. I don’t quiz her all the time to know when she knows and doesn’t know. I almost always make a judgment based on the way she relates to me. During the afternoon and evening, it seemed like she did know me as her husband. Once again, we had moved from a moment of anxiety to feeling at ease. This reinforces my belief that she just needs to be exposed to things with which she has been familiar. Then the anxiety disappears.

Is our glass “half-full” or is it “half-empty”?

When I began this journal (now a blog), I wanted to create an account of our lives since Kate’s diagnosis. That is the reason for my providing so much information about our daily activities. In a way, I wanted my posts to paint an accurate picture of the struggles we have faced and how we have adapted. Looking back, I think I was expecting more problems to deal with and fewer moments of happiness. As it has turned out, it is the “Happy Moments” rather than struggles that have filled our lives.

I often worry that whatever I say will lead some to believe that our lives are either “good” or “bad.” The reality is that our lives are a complicated mixture of both. Even now, the good far outweighs the bad. I do understand, however, that the way I have adapted to Kate’s changes permits me to see it that way. If I were looking at our lives today through the lens of 2011, I would be depressed. I am not depressed today. I have learned to appreciate many little things that I previously would have thought either insignificant or sad.

Let me give you a few examples of happy moments we have shared in the past few days. As we walked out of the bedroom the other day, she noticed a picture of our daughter, Jesse, in her wedding dress. It sits on the dresser, and Kate frequently stops to look at it. During the past two or three years, I don’t ever recall her recognizing that it is Jesse, but that doesn’t stop her from appreciating it. When I told her it was her daughter, she was moved to tears. She commented on the smile and her eyes, something that draws her attention in all photos. She asked her name. After I told her, she wanted to know more.

We spent at least five minutes or more looking at the picture. Then I told her we had a picture of Jesse’s twin boys in the family room and motioned her to follow me. This is another of her favorite pictures. She was thrilled to see it. She wanted to know their names. She got the impression they were her children. I told her they were Jesse’s boys. Then she wanted to know about their father. It wasn’t long before I was giving her far more information than she could digest. We went away without her ever having the understanding she wanted, but she had enjoyed herself. And I loved showing her the pictures. We do this regularly now. It’s not something we did much before, but it means much more to her now. I get a special kick out of her interpretation of the personal qualities of Jesse and the boys.

As we walked through the family room, she was captivated by the beauty of the flowering plants on the patio and the trees behind our property. She said hello to the ceramic cat that sits on the floor before we enter the kitchen. She looked at the photos of our son and her father that are also part of her daily ritual. This is always a good way to start the day.

During dinner, she said she wanted to tell me something. She said, “I know how much you do for me, and I want to thank you.” This began a series of comments that continued when we got in the car after dinner. She conveyed that she couldn’t live without me. She said some nice things about me to our server. As we left the restaurant, she said, “I wanted to tell you something else. I don’t know where all this is going. I wonder if we should get married.” I said, “I would love to marry you.” She said, “You would? That makes me happy.” I walked around my side of the car. We didn’t say anything more about marriage, but we talked about our relationship all the way home.

These are just a few of the many experiences we have on a daily basis. I would been sad if they had occurred eight years ago, but I have always wanted her to be happy. That is especially true now, and she is almost always happy. What I didn’t know then that I know now is that happiness is possible even after memory disappears, and I don’t have to look far to find things that make her happy.

I wish Kate had all of her rational abilities back – her memory for people, places, events and how to accomplish the many daily tasks of living. That’s not going to happen. From that standpoint, life is not going well for us now. On the other hand, being happy is of primary importance for both of us, so Kate and I would say that our glasses are still quite full.

Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

Yesterday was a good day.

After the challenges of the past week, I’m glad to report that Kate didn’t have any signs of anxiety yesterday. She wanted to sleep longer when I got her up but was cooperative. She was happy to see the sitter and didn’t give any indication that she was sorry for me to leave. She also got along well without me while I was away.

The only problem of the day involved her iPad. That is one I don’t think I will solve. This is a direct result of the progression of her Alzheimer’s. I just hope she will be able to continue for a little longer.

Unpredictability

Yesterday started out early – about 8:30. What was even better is that Kate was cheerful and showed no signs of anxiety. She was quite confused and was especially dependent on me to tell her exactly what to do when she went to the bathroom and then dressed.

Because she was ready so early, we went to Panera for her muffin rather than going directly to lunch. We were there shortly after 9:00 and stayed for an hour before returning home. She was quite tired and immediately lay down on the sofa. It wasn’t long before she was asleep. (I wasn’t surprised. The night before she woke up around 2:00. She was confused about where she was. We talked for almost an hour as I tried to tell her about us and our children. She was awake for a while around 4:00 as well. When I got up at 6:30, she wanted to go to the bathroom. Then she went back to bed until 8:30 when she got up for good.)

About 11:15, she opened her eyes. I thought that was a good sign that she might be ready for lunch. In some ways it was. She let me help her into a sitting position right after I mentioned lunch. Very quickly I realized that she didn’t seem fully awake. She was in more of a fog than she is most mornings. She said, “I don’t know what’s wrong with me.” After she was on her feet, she asked if she could stay at home. I told her I thought she just needed a little time to wake up and might feel better if we went ahead to lunch. She didn’t protest. After we were in the car, she asked again if she could stay home. I reassured her she would feel better when we got to the restaurant.

When we walked in the restaurant, the server had just put our drinks on the table. She walked to us and gave us a hug. As she and Kate broke their embrace, I said, “I think she really appreciates that hug today.” That led the server to give her another hug. This time when they released the hug, Kate started to cry. It was over quickly, but it was a good indication of her emotions for the next couple of hours. Near the end of lunch, she reached out her hand to me and asked me to hold it. I said, “Sometimes it’s just nice to touch someone you know who loves you.” She had tears in her eyes and nodded.

On the way home, she started to whimper and said, “I don’t know why I am crying. I don’t feel sad.” I suggested that sometimes either happy things or sad things can prompt cause us to be teary. I also told her that at our age we begin to recognize that we are much nearer the end of life, and we realize how . . . I hesitated a moment. She said, “How precious?” and I finished the sentence “our time is.”

I didn’t say what else I was thinking. She may feel happy, but I see signs of sadness. I try not to read too much into this, but I know she recognizes that she has problems that are well beyond what is normal. I experience sadness myself when I see her decline. I see my losing a little bit more of her each day. During her attacks of the past week, she has looked like someone in her last days on hospice.

She was very tired after we got home and wanted to rest. She rested the balance of the afternoon. She may have slept a little, but most of the time she was awake with her eyes closed. I suggested we leave for dinner. She asked where we were going. I told her, and she said, “I don’t have any money.” I told her that was no problem. I would pay for it. She said, “Well, I’ll pay you back.” At the time, I thought she must remember that I am her husband, but I didn’t say anything to be sure.

Before leaving the house, she mentioned another two or three times that she didn’t have any money. Each time I assured her that was no problem, but she wanted me to know that she would pay me back. I finally said, “You don’t have to pay me back. We are married. The money belongs to both of us.” She gave me a mildly defiant look and shook her that meant “We are not married.” I didn’t pursue it anymore.

After we arrived at the restaurant, she thanked me for helping her from the car and seating her. I told her I liked caring for her and mentioned that we had been together a long time. She asked how long. That led me into telling her the story of our meeting, our courtship, marriage, and having children. As I did this, she began to recognize me as her husband. She didn’t make any specific reference to things she could recall, but she asked me questions and reacted positively to my answers. She didn’t question anything I said.

I thought that would have cleared things up for the remainder of the day, but I was wrong. She was tired when we got home and wanted to rest again. We decided to go to the bedroom. She wanted to undress, so I took this as a good opportunity to get her ready for bed.

After brushing her teeth, she struggled for more than an hour over what she thought were bugs that get on her body and in-between her teeth. She worked to brush them off and to clean them from her teeth. She kept talking about how smart they are and that they know when you are looking at them. She asked me to look over her body and see if I could find them. I didn’t see anything. She had gotten wet while brushing her teeth and tried to dry herself off. She felt she wasn’t succeeding and was concerned that the bugs (she never referred to them as bugs) liked wet areas. She wanted me to help her get dry. I tried with a towel. Then I got the hair dryer. She felt dry, but she was still concerned about “them.”

All the time this was going on she periodically thanked me for being patient. She actually called me by name several times. At one point, I got the floss and tried to make sure there was nothing between her teeth. I never found anything. Finally, I think she must have gotten tired and quit. She said she wanted something to “read.” I gave her a photo book and her iPad. She chose the iPad, but she never opened it. She continued to pick at her teeth and her fingernails in an effort to get rid of the bugs. Once asleep, she slept until I was getting up at 5:45 this morning. She wanted to go to the bathroom.

She was very confused and frightened. She wanted to know where she was and who I was. I gave her my name and told her she was going to be all right, that I would help her with anything she needed. When I got her back to bed, she was still uneasy. I asked if she would like me to get back in bed with her. She did. I put on some soothing music. We talked a little while and I held her in my arms. Within thirty minutes she was calm. I asked if she was all right. She said she was. I told her I was going to get up unless she needed me. She said that would be fine. She is sleeping now, but I don’t know what lies ahead when she wakes up.

Another, But Milder, Morning Experience

It was a week ago yesterday that Kate experienced an intense and long-lasting (an hour) attack of anxiety. She had milder experiences four other mornings during the week as well as Friday afternoon’s experience while the sitter was here. That brings us to yesterday.

I was just finishing up a blog post when I noticed that Kate might be getting up. I went to the bedroom and found that she was having another attack. This time it seems to have arisen from either a dream or delusion. She apparently thought someone was in the house. She asked if they were gone. Rather than correcting her, I decided to go along, and I told her they had left. The problem with these fibs is that they often lead to further creative responses. In this case, she asked what they had said as they left. I told her they just said goodbye. Then she asked who they were. I said, “I don’t know, but they are gone now. Nobody is here but the two of us.” She was relieved, but I was concerned that she might still be a bit uneasy. I asked if she wanted me to sit with her in the bedroom. She did.

I remained with her for another two hours. She slept well and got up cheerfully for lunch. We didn’t have any other problems the remainder of the day.

Trying to Understand Kate’s Expressions of Her Feelings

Kate had another anxiety attack yesterday. This time it occurred in connection with a different kind of feeling. She wasn’t frightened by not having any memory. She was worried about being separated from me while the sitter was here. Here is the way the day unfolded.

We had a good morning. Unlike five other days in the past week, Kate showed no signs of anxiety at all. She wasn’t eager to get up for lunch, but she did so without any resistance. She was very comfortable with me. I like to think that she knew my name and relationship, but she didn’t say anything specific to confirm my suspicion. We had a nice lunch and were able to get back home in plenty of time to meet our sitter with ten minutes to spare. As I left, I told her I was going to the Y. She didn’t express any reservations about my leaving. She was tired and was resting on the sofa in the family room.

When I returned home almost four hours later, I encountered a very different situation. I heard Mary say, “There he is.” Kate said, “Where?” Then I walked into the room. Kate was seated on the sofa. She had a very worried look on her face. Mary said, “She’s been stressed.” When Kate saw me, she gave a big sigh of relief. I walked over to her. Even though she was relieved to see me, she remained upset. She said, “Are you my one?” She’s never referred to me that way, but I assumed that the word “husband” or “friend” wouldn’t come to her. I said, “I am your one.” She said, “I didn’t know where you were? I was worried.” She was more emotional than she had been when she experienced her attacks earlier in the week. I sat down beside her and tried to console her. She was appreciative, but it took her a long time to calm down. In fact, she repeatedly said, “I couldn’t imagine where you were. I knew you wouldn’t leave me.” It was thirty minutes later before she was calm again. I was surprised that she could retain a memory of her feelings for such a long time.

The rest of the evening was uneventful. As I have reflected on a number of recent experiences, I see a common thread. Her intuitive side is more “alive” now than in the past. Her feelings don’t seem to be different in kind than they were in the past, just more intense. I see that in her appreciation of music and beauty. It is very evident in her reaction to sudden noises, especially those that occur when we are in restaurants. The screams of babies and the noises of dishes as they are removed from tables by the wait staff cause her to make louder audible responses than ever before. She complains about the brightness of the sun when we walk from the parking lot into a restaurant and back again. She is bothered more than usual by the heat anytime she is outside. She is irritated by waiting. That happens at restaurants and also at the doctor’s office the other day. At several of our recent music nights at Casa Bella, she has been uneasy when seated at a table with more people than usual. She is also more easily irritated by things I say or do. She is very sensitive.

I am now connecting her anxiety attacks of this week as part of the same pattern. The loss of her rational abilities leaves her with only her feelings. While that is what provides her with a great deal of pleasure, it also brings with it a greater amount of pain than it would have in the past.

This is just one more thing that I didn’t fully anticipate. I have always tried to keep her safe and happy. This change is one that requires me to be more attentive to those things that are uncomfortable for her and minimize them as much as I can. I definitely need to work with her sitters to enlist their help when I am away from the house.