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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.

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Our Most Painful Moment (Yet)

Yesterday Kate was again up early enough for us to get to Panera and then have lunch before going to a memorial service for a church friend. Later in the day we spent a little time at Panera before going for our weekly pizza.

In previous posts, I have noted that she is asking for help with my name, her name, and our children’s names more frequently than she has done in the past. That was certainly true yesterday. As we left for Panera yesterday morning, she said, “What is your name?” I told her, and then she asked for her name. While at Panera, she asked my name and tried to repeat it back to me. She couldn’t and ask me to tell her again. We did this several times before stopping. It came up again at several other times of the day.

I didn’t think much about it, and we had a pleasant day. As we went to bed last night, this took a different direction. I moved close to her and put my arm around her. Then she asked, “Who are you?” I wasn’t sure whether she wanted my name or that I am her husband and said, “My name is Richard Creighton, and I am your husband.” She said, “We’re married?” I told her we were, and she asked, “Do we have children?” I told her we did, and she asked their names. She asked me where are. I told her Knoxville and that we had lived here 47 years.

Then she said, “My memory is going. I don’t know what’s wrong with me. I can’t remember anything.” That was a moment when I could have reminded her that she has Alzheimer’s. I decided not to do that. Instead I said, “Remembering things gets harder as we get older. I will help you remember.” She said, “I know you will. I’m going to get my memory back.” I said, “We’ve been married for 55 years, and we have always helped each other. I want you to know that you can count on me.”

Then I told her that I had started to write down things to refresh her memory about the things we had done during our 55 years together. She liked that. Then she said, “I want to do just a little bit at a time.” I told her we would take it slow and easy.

We must have talked 30-45 minutes going over the same things. This was not like the anxiety attacks she has had. Except for her words, and, at one point, a few tears, she was very calm and seemed to have a determined attitude about getting her memory back. She repeatedly said, “I’m going to get my memory back with your help.” Several times she also said, “I feel encouraged knowing that you are going to help me. We’re going to do this.”

Until now, I had thought she might not be able to sense how much of her memory she was losing and, thus, would not be disturbed at all. That is the way it has appeared to me even as she has asked me over and over for help with names and places. I am beginning to see her quiet determination to remember things. Last night’s conversation was the most serious one we have had about her Alzheimer’s. Even this one did not involve our talking specifically about that, but it went directly to the heart of her problem – her memory. She recognizes it. It disturbs her, and she is determined to recover.

Everyone talks about the importance of hope in our lives. Last night, she expressed hope that she could get better. I couldn’t tell her she has Alzheimer’s. That could have dashed her hopes of a recovery. I hope I’ve made the right decision.

It is now 9:40. Kate is still asleep. I can’t help wondering how she will feel this morning. Will she remember anything about last night’s conversation? Will we have another conversation like last night. I’ll just have to wait and see. I do plan to show her what I have written to go in her “Memory Book” I started this week. I don’t have much, but I know that she doesn’t like to be bombarded with information. As she said last night, “I want to do just a little bit at a time.”

I believe I have handled the progression of her disease as well as, or better, than anyone might expect. The hardest part is watching her decline. That is even more painful when I see that she is disturbed by what is happening to her. Last night was clearly our most painful moment during this journey.

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Facing Reality

Yesterday began pretty much like most days. Kate’s sleeping pattern has been somewhat erratic. I started to wake her up just before 11:00 so that we might have lunch before the sitter arrived at 1:00. It took her longer to get out of bed than usual, but I didn’t think much about that.

I decided to go to Panera for lunch since we were a little late getting away. I called the sitter to meet us there. As soon as we sat down, Kate said, “Does this place have a name?” That, too, is not unusual. Then she asked, “What’s the name of this town?” I told her Knoxville and that we had lived here 47 years. She was as surprised as she usually is. She asked the same question several more times.

When Mary arrived, Kate seemed perfectly normal. When I left, she didn’t show any reservations about my leaving. When I returned home, Kate was in the back of the house. Mary said Kate rested a little while I was away. Although she had plenty of sleep the previous night, I wasn’t too surprised about that.

After Mary left, Kate was ready to go as well. We went back to Panera for about 30 minutes before going to dinner. When we got out of the car, she asked, “Where are we?” During dinner, she must have asked another five or six times. As we left the restaurant, she asked again. I told her again, and she said, “So, we’re not in Fort Worth?” I said, No, we’re in Knoxville. We’ve lived here 47 years.”

The previous night we had watched half of the movie South Pacific. We had enjoyed it. All the music was so very familiar. We watched the second half last night. Kate started out working puzzles on her iPad but became engaged in the movie. She put the iPad down.

When it was over, I started to get ready for my shower. A moment later, she had a look of concern on her face. She called my name, and I went over to her. She said, “I don’t know what’s going on. I don’t know who I am or where we are?” I’m unable to find the words to adequately express her emotion. It was a look of puzzlement or fear. This was different from simply asking her name which has happened a few times recently.

I said, “Let’s take some time to talk. I think I can help you. I could show you some pictures of your family. Would you like to stay here in the bedroom or go to the family room?” She wanted to go in the family room. We sat on the love seat. On the table was a photo book that her brother Ken had made with photos of their father’s family. I picked it up and showed her pictures of her grandparents. She didn’t remember them at all. She has gone through this album many times. I might have thought the photos themselves would have jarred her memory. They didn’t. A moment later, she said, “Why don’t you show me tomorrow when I am thinking more clearly.”

I put the book down. I looked at her and said, “Can you tell me how you are feeling?” She said something like, “I don’t know. I just don’t know where I am and what’s going on.” I said, “Are you afraid?” She said, “No.” I asked if she was confused. She said, “Yes. I just don’t know what’s happening to me?” At that moment, and right now as I write, tears welled up in my eyes.

We haven’t spoken about her Alzheimer’s in years. It isn’t something she has wanted to talk about. Recently, I have wondered if she even remembered that she has the disease. Over the years, I had decided there was little reason for me to bring it up. Faced with this particular situation, however, I said, “What you are experiencing is caused by Alzheimer’s. It’s a natural part of having this disease.” Very calmly, she said, “I knew I had it, but I haven’t thought about it in years. I had forgotten.”

I didn’t go on to say any more about Alzheimer’s. Instead, I said, “I want you to know that I will always be here for you.” She said, “I know that. I’ve never doubted that.” She went on to say how fortunate we are to have had such a good marriage. As she often does, she also said how fortunate we are that our children have turned out so well.

I reminded her that we have been married 55 years and said, “During that time we have had so many great experiences.” She asked me to tell her some of those experiences. For the next fifteen minutes or so, I talked about the places we have lived and the special things we have done. We both enjoyed having this moment of reflection. It wasn’t that we don’t reflect. We do that a lot. In that moment, however, it seemed more special than usual. When we finished, seemed seemed more relaxed though probably still confused. I think we both felt comforted by our conversation.

Over the course of the past six months or so, Kate has been on a gradual, but noticeable, decline that is a sign of what will be the hardest part of our journey. Her experience last night brought the harsh reality of Alzheimer’s to the forefront of our lives. We have lived as if this day might not come. I knew it would, but it’s painful to watch someone you love go through it.

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A Sad Moment

My previous post was about a humorous moment. That fits well with many of the happy moments I so frequently post. I want to make clear that not everything that happens makes me happy. Last night was one of those times.

As we approached bedtime, I told Kate I was going to get ready for bed and that she might want to do the same. She went to her room and brought back two robes and a night gown. Then she proceeded to get in bed fully dressed. I suggested that she go ahead and change out of the clothes she was wearing. She got out of bed, but she looked confused. She asked what I wanted her to do. I told her specifically to take off the clothes she was wearing and put on the night gown that she had placed on the bed. I left her to take a shower. In a few minutes she came to the shower door. She hadn’t changed at all. She asked, “What should I do now?” She had completely forgotten what I had told her. That was not surprising. It more surprising that she was unable to figure out what to do at all. I told her again to take off her clothes and put on her night gown. The good news is that she followed my instruction.

I feel sad when she finds ordinary tasks so challenging. For me, that is clearly the hardest part of being her caregiver, not the frustrations, not the stress, but watching her gradually lose her ability to do one thing after another. While I take comfort in the fact that we are still able to enjoy so many things, I find myself wishing we could avoid the changes that may soon be coming our way.

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Something New, Another Sad Moment

After returning home from dinner last night, Kate got her robe and her iPad and came to the family room where I watched the news while she worked on her iPad. At 8:30, I told her I was going to take a shower. She said she would come back to the bedroom. As I was getting ready for my shower, she came into the room holding her iPad under her arm and asked in a very childlike way, “What do you want me to do now?” I told her I thought this would be a good time for her to get ready for bed. She looked like she didn’t know what to do. I asked if she would like me to get her night clothes for her. She said she would. I brought her a gown and the robe she had taken to the family room earlier. She was seated on the side of the bed. I placed the gown and robe on the bed beside her. She asked, “What do I do now?” I told her she could take off her clothes and put on the gown. She still seemed unsure what to do. I suggested that she take off her top first. She did that and then looked to me to tell her what to do next. I told her to take off her bra. She did that. She looked to me once again for instructions for the next step. I told her to take off her pants. She did and waited again for my instructions. I told her to take off her underwear and to put on her “night time” underwear that I had earlier put on the bed. She did that. Then I told her to put on her gown. As she started to do that, I walked away to the bathroom. She called for me to help her. She couldn’t put it on. In fairness to her, I think it is a challenge myself. I am not going to give her this gown again. We worked together to get it on. She got into bed with her iPad. I took my shower. When I got out, she had put away her iPad and was off to sleep. Based on the amount of sleep she had gotten during the previous night and the day, she should have had trouble going to sleep. It wasn’t a problem.

This was not the first time that I have helped her put on one of her gowns; however, the experience last night was very different. She seemed completely unsure of what to do from the time she walked into the bedroom until she was dressed for bed. Earlier in the week, she had told me, “I’m just going to let you make all the decisions.” That was the first time she had said that. The fact that last night’s experience came a few days after her statement is a another sign that she is softening her desire for independence. That’s a sad thing for me.

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So how am I feeling?

I often think that readers can tell how I am feeling simply by reading my posts, but periodically I feel I should be more direct. Sometimes, I think it really is obvious. Last week was a particularly good week for us. I was very upbeat. This week is different. It isn’t because Kate has not been in a good humor. She has. I think it is her sleeping so late that is bothering me. Today is the third day this week that I have had to wake her. One of those days I got her up so that we could get to lunch and get to an appointment with an orthopedist. Today, I needed to get her up so that we could have lunch before the sitter arrives at 1:00. I waited until 11:00. She was sleeping soundly, but she got up without a fuss. In the early years after her diagnosis, she would not have gotten up so quickly or cooperatively. That changed about 6-12 months ago. I see it as part of a pattern of changes that involve accepting what I tell her.

I often encourage people to recognize the differences from one individual to another. We’re not all alike, but I think the experiences of two friends have had an influence on me. One of those was a former roommate, Charlie Hardwick, with whom Kate and I visited last fall in Dallas. He, too, had dementia. I had been in periodic communication with his wife, Nancy, also a college friend at TCU. Based on what she had said about her husband, I thought he was a little ahead of Kate in the progression of the disease. A few weeks after we had been together, he died. Nancy told me that a short time after our visit, he started sleeping more, and then just went down hill. I was shocked at how rapidly he had declined.

I have another friend whose wife died about five months after I last saw her. I had been keeping up with her husband for several years. I also knew that she was further along in her dementia than Kate, but I never imagined that she would be gone so quickly.

These two situations have sensitized me to the fact that people can can decline quickly. That has caused me to observe Kate even more closely; therefore, the change in her sleep pattern has been of more concern than just my wanting her to get up so that we can have lunch together.

Intellectually, I recognize that what happened to our two friends doesn’t mean Kate will experience the same fate. It is very likely that she has a good bit of time ahead of her. On the other hand, I know that it is also possible that she won’t.

One other thing may account for my melancholy outlook relates to her increasing dependence on me. She appears to be at ease with that. In the past, she has been more insistent on doing things for herself. She is also more cooperative about everything. As I’ve noted in previous posts, this makes life easier for me. The downside is that it makes me sad to see her lose her independence.

An hour ago, I returned home to relieve the sitter. Kate was sound asleep on the sofa. Mary said she said she felt like resting and had been asleep about thirty minutes. That gave me a chance to talk briefly with Mary. It was interesting to hear her talk about Kate. She mentioned how sweet she is. She also told me that they had driven by the high school our children had attended and mentioned it to Mary. It is clear that there are lots of things that she sometimes remembers. I am sure the sight of the school served as the trigger for her to remember that our children went there.

After Mary left, I let her continue to sleep. She slept another twenty minutes before getting up. When she came into the kitchen, she was carrying her cup and iPad. She was ready for Panera. We’ve been here about twenty minutes and will leave for dinner shortly. Because of how long she slept last night and the nap she had this afternoon, I should expect her to be wide awake at bedtime. If she isn’t, that will probably add fuel to my fear that she is entering a period in which she requires more sleep than in the past. I hope not.

Lest my children, who may be reading this, begin to worry about me, I feel compelled to say this. Despite this moment of sadness, I am still getting along well. In this blog I try to convey what our lives are like as we live with Alzheimer’s. Most of our experiences have been good ones. Those experiences are not over. Most other moments will be more uplifting than this one. I believe, however, that I should let you know about the more difficult times. I wouldn’t want anyone to think we have skirted around the challenges. We have those, but, for the most part, we have been able to live full and fulfilling lives throughout this journey. I continue to be very grateful.

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Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that.

I do know that when we were in the waiting room of her dentist’s office this morning that she asked, “What are we doing here?” I explained that she was there to see her dentist. She said, “I don’t even remember who she is?” I also know that I had to wake her up at 10:00 to get her ready for her appointment and that she was quite groggy when she got up.

I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

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Movies Becoming a Thing of the Past

Movies have been an important part of our activities during our marriage. They have been especially important during the seven years since Kate’s diagnosis. For at least a year now, it has become much harder for her to enjoy them. I continue to try to find something that might appeal to her, and sometimes I am successful. The last one she enjoyed was a recent one, Darkest Hour. I had hesitated to try it, but when I told her what it was about, she wanted to see it. I think it must have been impossible for her to follow. I am sure that she understood that it was about Churchill and World War II. I am also confident that she could sense the drama involved. These are the things that must have caused her to like the film.

Today at lunch I checked to see if there might be another film that we could try. I saw that one of our theaters was showing The Philadelphia Story with Katharine Hepburn, Cary Grant, and Jimmy Stewart. Knowing that Kate has always liked old movies and each of those stars, I asked if she would like to go. She jumped on it. I bought the tickets right then. We finished our meal and went directly to the theater.

It is a film that is certainly dated, but it is also a classic. It came out in 1940, the year I was born. I thought it was fun to see these stars at such an early stage of their careers. Several times during the movie, I heard Kate yawn audibly. I didn’t think that was an encouraging sign. It wasn’t until we got in the car that I asked what she thought of the movie. She said, “I don’t even know what it was about.” I told her she was a good sport, that I appreciated her trying movies even if they didn’t turn out to be winners. She said, “Well, you can’t expect every one to be hit.” So true. I am finding that the hits are fewer and farther between these days. We still have plenty of things that entertain us, but I hate losing something that has been so important in the past.

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Sad Moment

We’ve had a great time with Kevin over the past few days. We dropped him off at the airport a couple of hours ago. There were several highlights while he was here. One of those was the Knoxville Opera concert on Saturday night. Another was a trip to the zoo yesterday afternoon. We had gone to the zoo in March when Kevin was here with Taylor. Kate had loved it, and I had been looking for a good time to return. It was too hot during most of the summer. The weather cooled off when Kevin came, and I thought it would be worth a try again. It really worked. She was as fascinated with the animals as any child would have been. I will certainly think about another visit to the zoo this fall
After returning from the airport, Kate remained outside. She got a little warm in less than an hour and came inside. It wasn’t long before she came to the kitchen with her iPad and a look of boredom on her face. I said, “You’d like to go someplace.” She nodded. I got my iPad and two cups for drink. We headed for Panera.

As we entered the parking lot, I noticed that she was wearing one brown shoe and one black shoe. I didn’t say anything. Once we were seated, she looked down at her shoes and noticed they didn’t match. She said, “I have one brown and one black shoe.” I told her that would be all right. She looked bothered but didn’t say anything. I watched her for another moment, and she started to cry. I said, “I don’t want you to be bothered. It’s all right.” She pulled herself together, but it was clear to me that it was one of those moments when she realizes that she is changing. It is so sad to watch this. I feel much better when she doesn’t recognize the symptoms.

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Sad Moment, – Sundowners?

About an hour ago, Kate came in from outside where she had been pulling leaves since we got home from dinner. I met her in the laundry room, and she said, “What now?” I told her it was time to take a shower and get into her night clothes for bed. She accepted that and went to shower.

After quite a while, I went back to her room to make sure she remembered to put on her night clothes. When I got there, she was about to get dressed to go out. I told her I was just coming back to remind her to put on her night clothes. She thanked me for that and said she was about to put on her regular clothes. I left the room.

In a little while she came into the kitchen fully dressed with her iPad in her hand along with a book of crossword puzzles. She was ready to go out to Panera or Barnes & Noble. I reminded her she needed to put on her night clothes. She went back to her room.

I had sat down in my chair in our bedroom when she walked in fully dressed. Once again, I told her it was time for her night clothes.

She went back to her room. When she returned, she was carrying a night gown but still dressed. She said, “I can just put this on over . . .” (did not finish). I told her she should take off the clothes she was wearing and just wear the night gown, that she would get hot wearing both.

She left again. She came back without the nightgown but had put on a different top. I stood up, walked over to her and put my arms around her and told her how much I loved her. She hugged me tightly and started to cry. She quickly stopped herself. Then I said, “Wouldn’t you like me to get you a night gown?” She nodded. I went back to her room and got a night gown and brought it to her. When I gave her the gown, I said, “We take care of each other, don’t we?” She agreed. Then I took the clothes she had been wearing and hung them up in her closet.’

I am back in the bedroom now. She is working on her iPad. When I walked in, I said, “The way you are lying there you look like the subject for an artist to paint.” Then I said, “We have a good time, don’t we?” She agreed. I said, “We’ve had a good time; we are still having a good time; and we are going to have more good times.”