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A Day of Ups and Downs

As I said in my previous post, Kate was resting peacefully yesterday morning though not asleep. When I felt it was time to get her up for lunch, I encountered what appeared to be a combination of anxiety and depression. She didn’t want to get up. I quickly sensed that this wasn’t something I had faced before. She seemed more frightened. It was also one of those times when she wasn’t sure who I was and wasn’t as trusting as usual.

I decided not to worry about getting her up immediately but to see if I could comfort her as I have done in the past. I brought in the photo of her mother from the hallway. She looked at it but didn’t say anything nor did she express any interest in seeing it. I put it back and brought in the “Big Sister” album with the photo of her and her brother on the cover. She was mildly interested. She did recognize herself, but it didn’t do a thing to change her mood or readiness to get up.

I said, “You look frightened. Are you?” She nodded her agreement. I said, “I would like to help you if I can.” She said, “I know you want to help, but there isn’t anything you can do.” I asked if she could tell me about it. She couldn’t. I continued to talk with her very gently focusing on making her comfortable with me. That paid off.

After what was probably fifteen minutes, I asked if I could take her to lunch. She said, “I don’t know.” Then I suggested that she might feel better if she got dressed and we went to lunch. She didn’t buy into that immediately, but I assured her that she would feel better if she got up. She finally agreed.

When she got to the family room, she started to recover. She took an even longer time looking at the plants on the patio and the trees behind our house. She also perked up when she saw her ceramic cat just before entering the kitchen. All of this stimulation took her mind off of her fright. It looked like she was fine. Then as we stepped out of the house into the garage, she became frightened again. She didn’t know why.

We got into the car, and I put on some music that I hoped would help to calm her. That worked. By the time we reached the restaurant, she was all right. We encountered only one issue during lunch. She asked my name. I told her, and then she became very sad about not remembering it. Then she asked her name. When I told her, she tried several times to repeat it, but was only able to do it with great difficulty. The rest of our lunch went well, and we got back to the house without any problems.

As she often does, she asked what she could do. I gave her the usual options. She decided to look at a photo book. I decided to let her look through it by herself. I read the introductory information. Before I finished, she was tired and wanted to rest.

She rested about two hours before I asked if she would like to look at some of our old 35 mm slides that I had converted to digital a few years ago. She usually declines. This time she surprised me. I got my laptop and sat down beside her. I started with photos from the Fall of 1968 when our daughter was born. She enjoyed seeing them. It had been years since we had looked at them. We spent almost an hour doing that before going to dinner. It was a highlight of the day.

As we drove home from dinner, she became concerned about “the other people” who would be “there.” I explained that we were going to our house and that no one else would be there. I told her it would be a time for us to relax without any obligations. That seemed to relieve her. At least she didn’t say anything more about it.

At home, she surprised me again by working on her jigsaw puzzles for over an hour without much help. After that she was tired and wanted to quit. We adjourned to the bedroom, and she was in bed around 8:00. It is almost 10:00 this morning, and she hasn’t gotten up. I’ll let her sleep until 10:45 if she doesn’t wake sooner. I am hoping for a better day.

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Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

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Yesterday’s Happy Moment: An Example of Kindness

I don’t recall exactly when Kate and I began eating out for lunch and dinner. It was at least eight years ago, perhaps longer. In January, it will be nine years since her diagnosis. I was still working then, but I started taking Kate to lunch almost every day. For our evening meals I prepared a meal at home or brought in something from a nearby restaurant.

I soon tired of fixing dinner and cleaning up afterwards. The meals themselves didn’t seem special. That’s when I decided to eat out for all our lunches and dinners. I was motivated by convenience and a desire to concentrate on having a good time with Kate. As I learned long ago, change brings about unintended consequences. Yes, I did find it easier to eat out than to prepare or bring something in, but that turns out to be a smaller part of the story. What I discovered is that eating out became not only a time for Kate and me; it became a moment of social engagement that has been a lifeline from the very beginning.

As a result of our going to the same restaurants on a weekly basis, we have come to know the servers, hostesses, and other personnel. Just as important, they have come to know us. From the beginning, I informed them of Kate’s Alzheimer’s. This was long before I had my printed Alzheimer’s cards. I wanted them to be aware so that they would understand if they ever noticed something that might seem a bit strange.

Much is written about caregivers and their need for support. Earlier this week, I saw a Tweet that indicated that 74% of caregivers never ask for help. I understand that; I’m not prone to ask for help myself.

I’ve also read about the importance of a caregiver’s “building a team of support.” That caused me to reflect on our own situation. I had never thought about doing that for Kate and me, but that is exactly what has developed because of eating out. Yes, it consists of many short-term interactions and is not like the long-standing relationship of close friends. However, it provides a good bit of support and not just to me as a caregiver, but to Kate as well. We experienced a good example of that yesterday at lunch.

A month ago, the young woman who had served us the past three years for our Saturday lunch left her job for another one. We continue to go to the same restaurant and are getting good service, but I have missed the one with whom we had gotten so well-acquainted. Last week, I sent her a text and invited her to be out guest at one of our other restaurant. I didn’t know when I asked her, but it turned out to be her birthday.

We had a nice conversation under more leisurely conditions than when she was serving us. She has always given a lot of attention to Kate and did so again yesterday. I was careful to seat Kate directly across from her to make that easier than if I had been seated there. I’ve done this on several other occasions and sense that it makes a difference.

I made reservations and requested a server that has taken care of us frequently. When I introduced her to our guest, I mentioned that she had been our server at another restaurant. That opened the door to a little conversation between the two of them. The obviously shared a number of things in common.

The big surprise came after we had finished our meal. I told our server I knew we wanted a dessert since it was our guest’s birthday. I expected that she would bring the dessert menu. Instead, she came back with two desserts, a crème brûlée cheesecake with a candle and a large chocolate cake with raspberry filling between the layers. She said she had bought the cake especially for Kate who was touched and broke into tears of joy. Then the server left and brought a beautiful potted plant for her. Nothing could have been better. We have added that to Kate’s other flowering plants in our family room and on the patio where she can enjoy it every day.

It was a beautiful way to end our meal. It was also a reminder of how kind people can be. Incidentally, this was the same restaurant where some anonymous person paid for our meals two weeks ago and where that same server had brought her mother in to meet us. None of the restaurant personnel think of themselves as playing a role as members of our “support team,” but they are and have been. It really makes a difference in our lives and is just one other example of how fortunate we have been.

 

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We Still Have Happy Moments

In my last post I mentioned a sad moment Kate and I had experienced when she was so disturbed about the way she looks. I’d like to balance that with a couple of happy moments. We still have them, and they seem more important now than ever before. I think about “moments” more lately because it seems harder for me to describe a full day in a single word.

Two times in the past few days we have had an especially good time looking through her family photo books. Both of those occurred after her afternoon rest. In each case, I took the initiative of suggesting we sit down side by side and look at one. I make a point of that because she often looks at the cover of one of her books, but she doesn’t spend much time with them by herself. I think it must be that she doesn’t recognize the people, at least most of them, and she doesn’t have the ability to recall or imagine anything about the pictures or the people in them. She needs someone to give her specific names and information that provides the context for what her eyes see.

As it is for other activities we share together, I have as much fun going through the photo books as she does. Of course, a significant aspect of the pleasure for me is seeing her eyes light up and hearing her enthusiasm as we look at each photo. She continues to comment on people’s smiles and their eyes. Her primary interest appears to be in the mood of each person. I don’t recall her mentioning anything about clothes that people wore or anything else. She does say good things about her family as a group. Her strongest feelings are for her parents, especially her mother, but she expresses those mostly when she looks at some of their framed pictures around the house.

I find these moments a good substitute for our afternoon trips to  Barnes & Noble. We rarely go there now. When we finish, it is about time for dinner. It sets a nice tone to our relationship that extends until bedtime. That remains the most predictable good time of the day. I think that is because neither one of us feels any pressure. It’s a time when we just relax together.

Yesterday Kate was in a good mood when she got up, and it lasted all day. At lunch we had another happy moment. Kate was unusually talkative. I can’t begin to remember all the things she said. A lot of it involved how fortunate she and I have been. She was upbeat about everything.

There was a sad moment, however, when the server stopped at our table and said something nice to Kate. After she left, Kate commented on that. She specifically noted that the server had talked to her and that people usually talk to me. I have noticed the same thing. She didn’t seem disturbed about it. I think there are two things that account for that. One is that people don’t know what to say. The other is that Kate is slow to respond. That makes it hard for her to play an active role in a conversation with three or more people.  The conversation then drifts to one between the others and me.  Maybe that is why conversations like the one we had yesterday mean so much. She is relaxed and can be herself.

Last night we had dinner with a couple we know from our music nights at Casa Bella. We arrived first, and Kate already seemed like she needed to prepare herself. As she often does when it is just the two of us, she picked up the menu. She quickly found that she couldn’t read it and asked me what she should get. I explained that she usually gets either the Tortelloni alla Stephania or the Tortelloni alla Panna. I told her I would order for her and that she had the Stephania last week, so she might like the alla Panna this week. She tried several times to pronounce it.

About that time, our friends arrived. As soon as they were seated, Kate asked their names. She tried to repeat them back and was able to do so after a couple of tries. Of course, she forgot them immediately, so she asked again several times back to back before stopping.

Then she gave her attention to what she should order. I told her I thought she would like the Tortelloni alla Panna. She tried unsuccessfully to pronounce it. Then she asked Lisa. She and Lisa worked on the pronunciation a few times. Fortunately, the server came for our order a few minutes later, and I gave her our orders. Kate was off the hook. She must have felt a sense of relief to have that hurdle behind her.

She really wanted to be a part of the conversation, but it was too hard for her. Lisa is a fast talker. Ben speaks softly. At first, she kept asking each of them to repeat things that she didn’t understand. After a while, she just gave up. Because it was such a challenge for Kate, I thought this was likely to be one of the last times we get together. When we said goodbye, I asked Kate how she had enjoyed the evening. She said she enjoyed it.  She didn’t seem bothered in any way. Nevertheless, I believe situations like this may become even more difficult in the future. I will certainly stop them if that happens. Until then, I think it is good for both of us to have the additional stimulation of being with other people.

Experiences like this make our happy moments together even more important. I am optimistic that we still have a lot of them in the days ahead whether it is just the two of us or with others.

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A Sad Moment

I am always happy to report on the Happy Moments that Kate and I share, but there are occasional times when I feel a moment of sadness. That occurs primarily in times when Kate is unhappy, experiencing anxiety or panic. To a lesser extent it also occurs when there is a change as she loses the ability to do things like working on her computer, the yard or her iPad, or the first time she forgot my name. I recover from her losses, but I have never gotten used to the times she is disturbed. One of those happened yesterday.

As I helped her dress, she was in a good humor, and I was sure that she recognized me as her husband. Then we went to the bathroom to brush her teeth. I asked if she would like some mouthwash. She responded as if I had said something that angered her. She said, “I just want to get out of here. I want to get back to my old self.” Moments later, she looked in the mirror and said, “I look awful. That’s not me.” She was very distressed. I told her I thought she was beautiful, but she didn’t believe me and didn’t want to hear that. She has always wanted me to be truthful with her but has also been aware that I want to say things that make her feel good.

In this case, the truth is that she has put on 40-50 pounds since her diagnosis. That has changed her physical appearance. She doesn’t look the way she did before. At first, I told her that we all change our appearance as we get older. She said, “It’s more than that.” My next option was diversion.

When we finished in the bathroom, I told her I wanted to show her something. I took her hand and we walked to the hall outside our bedroom where we have some of her family photos. First, I showed her the picture of her mother, then her grandmother, followed by her grandfather, and her father. Her mood changed immediately with the first photo. We talked about each one and then went to the family room where she reacted to the flowers, her ceramic cat, and another photo of her father. The crisis was over. The rest of the day she was fine.

This particular experience is just one other that lets me know that she recognizes she is not the same as she used to be, and it hurts. Her intuitive insights generally please me but those about herself are painful to her and, thus, to me as well. I take comfort that incidents like this are rare. I would rather have life the way it is now that what it may be like in the future when that self-awareness is gone.

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Unusual Behaviors

I’m exercising an extra measure of discipline this morning. I just finished my forty-minute walk around the house while listening to All the Light We Cannot See. I am getting to the end of the book now and was having one of those “driveway moments” they sometimes talk about on NPR. I was tempted to continue walking just so I could hear what happens next. Then I should take advantage of a little extra time to upload a post before my self-imposed deadline of 9:00. I haven’t been very good at that lately.

When I wrote the message on my “Alzheimer’s cards” I carry in my wallet, I settled on a message that says, “My wife has Alzheimer’s. Sometimes she may say or do something unusual. Your patience and kindness are appreciated.” I struggled with the word “unusual.” I wasn’t sure it communicated the right message. As time has passed, I feel that works pretty well. Kate often says or does something unusual whether we are at home or out. Here are a few things I have observed recently.

Putting saliva on her fingers and wiping it on her face. This habit is paired with her hair pulling that begins shortly after she lies down to rest. She catches a few strands of hair at her scalp and gently pulls them upward until she reaches the ends and lets them fall. She is meticulous and proud of the way she does this moving from one side of her head to the other.

I can’t say when wiping her face with saliva began. I have only noticed it in the past week or two. It seems to occur after she finishes with her hair. So far I haven’t seen her do either of these things in public. At least once she has told me to watch what she is doing as though she is proud of doing something beneficial to her skin. The good thing is that washes her face and arms when she washes her hands and/or teeth.

Another one I have mentioned before is rubbing her fingers between each of her toes after she showers and before I put on her socks in the morning. She often says, “I’m getting them.” Sometimes she holds her finger out to me and says, “See.” I’ve never been able to see anything.

While these things are only done at home, they are consistent with other behaviors that are more public. The other night at Chalupas she asked me for a cup. I wondered why she was asking and pointed out that she had a cup that was full of Dr. Pepper. She scooped up a spoonful of her Pollo Fundido (Chicken and rice topped with cheese) and dropped it in her cup. When she finished her drink, she noticed the residue of food at the bottom of her cup and called my attention to it. She hadn’t remembered putting it there. I like to think that she might not have done that if we had been with other people, but I’m not sure.

Last night she deliberately put a small piece of her bread on the table. It was mostly crust which she doesn’t like. Later in the meal, she suggested it was almost dead. I said, “Do you think I should put it out of its misery?” She said, “It’s up to you.” I picked it up and put it on a plate. Then she started looking at small specks of other debris from her plate. She saw one black spot and crushed it with her finger. Looking at small spots like this is very common, and she seems to treat them as though they are alive.

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Data on the iPad

Kate’s use of the iPad continues to be a smaller part of her life as she declines. It wasn’t long ago that I mentioned the amount of power left in the battery at the end of the day used to be from 25-50%. Yesterday for the first time, I took a look at her screen time over the past seven days. It was very instructive. Her total time on the iPad was 3 hours and 19 minutes (an average of 28 minutes per day), and almost half of that was on Tuesday, one week ago. She didn’t use it on Saturday or Sunday. As of this morning, her screen time was 2 hours and 10 minutes for the past seven days (an average of 18 minutes per day).

I don’t have the data to prove it, but I know that at one time her screen time must have averaged as much as 6 hours or more per day. That was her major activity. She was on it most of the time she was awake and not eating or involved with some other activity I had planned.

This causes me to reflect on the progression of change that has occurred over the past eight years and ten months since Kate’s diagnosis. At the start, she was actively working on her computer. It was challenging for her, but she was able to check her email and work on a photo book that she is still planning to create. She never got beyond editing photos and did that for many hours every day. She also enjoyed working in the yard. She pretty much filled her day between those two activities. As it became increasing difficult to use her computer, she started working much more in the yard. She could easily spend six to eight hours there. It was her “happy place.”

When I saw that she wasn’t using her computer as much, I introduced her to the iPad. I thought that would be an easy way for her to keep up with her email and Facebook. She never got into that. It was only when I showed her the jigsaw puzzle apps that the iPad became an important source of entertainment.

She continued to spend a lot of time in the yard until about two years ago. She “pulled leaves” until there were almost none left. (That killed almost eighteen shrubs. I gave them a year to come back and had them taken out a year ago.) That is when she was left with the iPad as her only self-initiated activity, and now that is going away.

The consequence is that I am playing a more direct role in keeping her occupied. Her photo books have become more important. At the same time, she is resting more. That helps to balance my load. On the whole, there are other things that also require more attention. I am washing a lot more now. Each of the past three mornings I have had to change the sheets on our bed. That doesn’t demand much of my time. It’s just one more thing.

Having said that, I don’t want people to be overly concerned. I don’t feel overworked or stressed out. Before that happens, I will bring in additional help. We still enjoy being together, perhaps even more now. I know our lives are likely to change significantly – and sooner than I want. Kate can’t think about the future. As a result, she has no idea how little time is left for us. She does recognize her dependence on me and counts on me for everything. I won’t let her down.

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Delusions, Paranoia and Other Things

Yesterday, Kate woke up on her own before 10:00. I took her to the bathroom. After that, she wanted to lie down again but didn’t go to sleep. I got her up and dressed in time to have lunch at noon. Prior to that I didn’t observe anything much different from any other day. She wasn’t especially cheerful, but she wasn’t depressed. As on other mornings, she expressed her greatest enthusiasm for the photo of our daughter, the flowers, the backyard, and the photo of our son.

At lunch, everything was going along well. She asked multiple times about the Frank Sinatra mug shot. Then late in the meal she looked at a large poster of a bottle of Cinzano. She had asked about it only two or three times before. When she asked, I explained that it was a brand of Vermouth and often used in Martinis. That led to explaining a Martini. I told her it was gin with a very small amount of Vermouth, sometime so small that one could hardly tell it was there.

That may have sparked something. She said, “Sometimes somebody could try to slip that in your drink.” We went on with our meal. Our server brought her another Dr. Pepper. Kate took a sip and had a look of suspicion on her face. She said, “I think someone in here is trying to get me. I’m not going to drink it.” I asked if she knew who “they” were. She said, “No. I think they’re working with her (our server), but she doesn’t realize it.” In another minute, she showed me a small piece of tomato that was in her orzo. She said, “See.” I said, “Is that something they planted?” She nodded.

She continued to talk about the need to be careful and that they might get me as well. It wasn’t long before our server asked about dessert and mentioned they had pumpkin cheesecake. I discretely let her know that Kate doesn’t like pumpkin. Then I told her that sometimes “we” eat things that “we” didn’t like in the past and to bring us a piece. When she bought it out, she whispered in my ear that she had added extra whipped cream on top because she knew that Kate likes it. As it turned out the problem wasn’t the pumpkin itself. She took one bite and liked it, but she said “they” had gotten the cheesecake as well as the Dr. Pepper. She took one other bite, but I ate the rest.

I know that paranoia is one of the common symptoms of Alzheimer’s, but this was the first occurrence for Kate. I’ll be interested in whether or not we have a repeat.

The other experience occurred at a local theater. We went to see Into the Woods. We had seen this quite a few years ago on Broadway and were not taken with it; however, I know that it received a lot of awards. That made me think about going. We have a season subscription, so it didn’t cost anything extra. I went prepared to leave at intermission, if necessary.

It turned out that was a good plan. The only thing better would have been to have stayed at home. It was simply too complex for Kate to enjoy. In addition, much of Sondheim’s music is not melodic. She just couldn’t get into it. Throughout the first half she gave me lots of dirty looks as if to say, “You are the one who brought me here. Now get me out.” Several times she gave me an angry look when I applauded.

When intermission came almost ninety minutes later, I said, “Let’s go.” The irony for me is that I thought the musical itself was very creative and well-done. In fact, it was the best cast I have seen at this particular theater, and we have attended off and on for thirty-five years. The quality of the singers was excellent. When I said that to Kate as we walked to the car, she agreed the cast was great. It was interesting that her displeasure did not affect her evaluation of the production itself.

We didn’t talk much on the way home. I decided it was a good time to play music that I know Kate likes. I learned a lesson today. We have always been willing to take a chance on theater productions. Most of the time, we are glad we went. At this stage of Kate’s Alzheimer’s, however, I need to be more careful in what I choose to see.

We relaxed at home for an hour before going to dinner. I played a Barbra Streisand album that she likes while she rested on the sofa. Our son called during that time, and she enjoyed his call. She spoke a little more than usual and gave him a sincere thank you for calling.

After Kevin’s call, we went to dinner and then back home to watch a portion of Fiddler on the Roof. We had watched about an hour the previous night. Last night she just couldn’t get into it and wanted to go to bed.

At 2:00 this morning, I felt Kate move. She was sitting up on her elbows. I asked if she needed to go to the bathroom. She said, “No. Where are they?” I said, “What do you mean?” She said, “My notes. I can’t find them.” At this point, I knew she must have been dreaming. She started feeling around the bed with her hands. She asked me to turn on a light which I did. Then she got out of bed and looked around the room. When she didn’t find them, she looked in the bathroom. Of course, she didn’t find them, but she did bring back two photos she likes. One was our daughter in her wedding gown. The other was a photo of my mother and me on Mother’s Day two years before she died. She put them on her bedside table.

I thought she was going to spend a good bit of time looking around. It was only after telling her several times that I thought she should get back in bed and wait until morning to look any further. All this took about fifteen minutes. When she got back in bed, she couldn’t get the notes off her mind. She kept talking about trying to find them. I promised her I would help her search this morning. We must have been awake another thirty minutes before dozing off. I am counting on her not remembering any of this when she gets up.

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More Signs of Aphasia

Kate’s vocabulary continues to shrink. At lunch on Friday, she picked up her knife and asked, “What is this?” I said, “It’s a knife.” She said, “What’s a knife?” I explained that it was something we use to cut our food. She said, “So it’s a cutter.”

Saturday morning after brushing her teeth, she showed me the toothpaste and said, “What’s this?” I told her that was the toothpaste she had used to brush her teeth.

I should add the word “wife.” That was the word she didn’t remember yesterday morning when I told her we were “husband and wife.” Of course, I shouldn’t forget “glasses.” She has so often commented on my glasses suggesting that I might look better without them that I was surprised when she forgot that word.

These are just a few of the words I have had to explain in the past few days. As I have said in the past, I don’t mean that these words are now completely dropped from her vocabulary. I suspect if I showed her all of these objects right now, she might identify them correctly without hesitation. The point is that they are signs her memory for everyday things is beginning to weaken.

Each one is just a little thing. Over time, however, they add up. It alters the flow of conversation. I find that especially noticeable when we are with others. As someone tells us something, Kate has to stop them to ask what a certain word means. Most of them are much less common than knife, toothpaste, and glasses, but it still has an effect on our conversation.

As I have noted before, losing her ability to speak will be a low blow for me. Although the content of our conversations is far from what it was before Alzheimer’s, the sound of her voice remains. It’s certainly not the only connection between us, but it is one I value highly. Yesterday her enthusiasm for the flowers in our family room and patio and the trees behind our house was at a peak. It was a high moment for me just to see and hear her enthusiasm. She pointed out everything that was special to her. Then when she turned around, she saw them again “for the first time.”  I will miss hearing her express enthusiasm like that if she loses the ability to speak, and that is likely if she lives long enough.

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The Longest Time Kate Has Not Remembered Me As Her Husband

The past couple of days have been similar to a few other days this past week. Once again, Kate was up early. Shortly after getting to the bathroom, she said, “Who are you?” I gave her my name and told her I was her husband. She said firmly, “No.” I said, “I’m a friend, and I can help you with anything you need. She didn’t ask again until we were on the way to Panera around 9:00 when she asked, “Why am I with you?” I said, “Well, you’re my wife.” She gave me a look of astonishment and said, “What’s a wife?” I explained, but she was not ready to accept that we are married. I said, “Let’s say we’re very good friends.” That usually works, but it didn’t this time. She didn’t want to hear that either. At Panera, the subject came up again with the same reception. Except for her reaction each time I told her we were married, she acted very normally with me. Nothing would have suggested that we weren’t husband and wife.

At lunch, I said, “I think I might make you my girlfriend for life.” She was insistent that would not happen and told me not to say anything more. I didn’t until we were on the way home from dinner when she said, “Why am I with you?” as she had done that morning. I gave her a similar response and she did the same. I didn’t say anything more until she was in bed. I sat down on the bed beside her. She smiled at me, and I said, “I love you. Do you know how long we have been married?” She smiled again and said, “How long?” That was the first sign of recognition the entire day.

Kate started the day even earlier this morning. She was awake at 6:20 when I got up. I asked if she wanted to got to the bathroom. She said, “Not right now.” I told her I would be in the bathroom and to call me if she needed me. I had just gotten to the bathroom when she called.

She used the toilet and then asked, “What now?” She pointed to the shower. I hesitated a moment because it was so early. I knew she would want to go back to bed. Sometimes, however, she doesn’t want to shower. I quickly decided this was an opportunity I didn’t want to pass up. I told her I would get the shower ready for her. Before getting in, she asked, “Who are you?” When I told her my name and that I am her husband, she didn’t believe it. I told her we were friends. That worked.

After her shower, she wanted to lie down again. I turned on an album of cello adagios at a soft volume. I dressed and told her I would be in the kitchen and to call me if she needed anything. I asked if she wanted me to turn off the music. She said, “Oh, no. Please leave it on.” It was one of a number of reminders in the past few days of how much she enjoys music. It is now 8:30.

BREAK

It is now 10:15. Right after my earlier entry, I heard her say something. I went to the bedroom. She hadn’t called me. We spoke for a few minutes. She surprised me when she wanted to know who I was. I gave her my name and told her I was a friend and that I could help her with anything she needed. She didn’t show any signs of wanting to get up, but it also didn’t look like she was ready to go to sleep. I asked if she wanted to get up. She said she did but needed some clothes. I told her I would get them. She was surprised that I would know where to find them. I told her I knew a lot about her and that I knew her parents. She asked their names. Then she asked my name. I said, “Kate.” She recognized her name and asked for her full name. I said, “Kate Franklin” (her maiden name). I got her dressed without a problem. Even if she didn’t remember that we are married, she clearly trusts me.

The first real spark of life came when she reached the family room. She noticed all the usual things, the room, the flowers, the flowers on the patio, the back yard, and the photos. We spent about fifteen minutes just looking around as she enjoyed what she was seeing. When we started for the kitchen where I had laid out her morning meds, she said, “Don’t you hate to leave this place?” I explained that it was ours and that we would be coming back after getting her a muffin. She was surprised and happy.

We are now at Panera. She stopped working her puzzles and is finishing up her muffin. That means we will probably head back to the house shortly. We won’t be there long before going to lunch. She is happy. I am happy. I am optimistic about the rest of the day.