Posted on

Trying to Get Back to “Normal”

About 10:45 yesterday morning, I put on some music to wake Kate. Ten minutes later, I approached her bed. She looked up at me and smiled. I knew it would be a different day. I didn’t test her, but she appeared to recognize me. She was still very relaxed and not ready to get up. I chatted with her for another few minutes before telling her I would like to take her to lunch.

She still didn’t want to get up, but finally, with a little encouragement, she did. It was a shower day, and she wasn’t enthusiastic about that. Again, she delayed a little but agreed it was good to get one. Then it was back to bed for another twenty minutes before I got her dressed.

It was a morning when she wanted to exercise her independence and let me know it rather sternly when I tried to help. This is a tough situation for her because she always ends up recognizing that she needs help even though she wants to do everything for herself. I really felt for her. I am always struck by her self-awareness when she responds so harshly to me. She apologized several times before going to lunch. I may say more in another post, but I want to emphasize something I have said before. I don’t interpret her irritation with me to be a direct symptom of her Alzheimer’s. It appears to be result of what is a symptom – an inability to understand what I want her to do and/or my intentions. In her confusion, she strikes back in defense then intuitively recognizes that is not the way she has traditionally acted or wants to act.

Our walk through the family room was not as long as it often is, but she did react positively to the usual things that appeal to her. It was the drive to lunch with music she enjoyed that brought her back.

We didn’t get to the restaurant until 12:45. They were “slammed.” As a result, we didn’t get home until almost 3:00. She was ready to rest and did so for the next two hours. I was on a phone call with my brother fifty minutes of that time. She appeared to sleep a while, but she was awake most of the time. She often mentions the trees outback, especially the tops of the trees she sees through the skylights. She didn’t talk at all yesterday. A half hour before we left for dinner, I thought about looking at some of our old photos, but that didn’t seem to appeal to her.

Throughout the day, she was confused about a variety of things. Most of them were the usual ones I have mentioned before. I had a hard time getting her to understand about using soap when she showered. When I attempted to show her by putting the soap on her, she said, “Don’t touch me.” I think that was a moment when she didn’t recognize who I was. She is also beginning to get confused about the use of her toothbrush and toothpaste. At dinner, I brought her an extra napkin. She didn’t know what to do with it. I explained it was just an extra one she could use if she needed it. (She always does.) She said, “Where should I put it?” I showed her a place on the table to the left of her fork. She couldn’t understand what I meant. I finally placed it for her. She still looked confused.

The best part of the day, and it was really good, came after we got home. I turned on the TV to a YouTube video of a concert version of My Fair Lady with Kiri Te Kanawa and Jeremy Irons. I have played this several times before, but she was never as taken with it as she was last night. She sat in her chair and devoted her attention to it for almost an hour. That is unusual. It is more typical for her to lie down in bed and listen without watching. When the video was over, I got her ready for bed. I had intended to stay up a little longer as I usually do, but she wanted me to come to bed as well.

Ending the day on a high note is one of the most predictable times of the day. The morning continues to be the most unpredictable; overall, however, we still have more happy times than sad ones. I am grateful.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

The Past Two Days

Monday morning Kate got up early. I was glad because she was up in plenty of time to be ready for the sitter. She was more confused than ever. I’m glad to say that she wasn’t seriously disturbed about it. I wouldn’t call it an anxiety attack, but she was certainly puzzled. It was similar to what I can remember of movies with someone who is experiencing amnesia. This is hard to put in words, but she seemed in a deeper state of confusion and required a little longer to come out of it.

It began when she got out of bed and went to the bathroom. We went through what is becoming a regular routine. She asked about the picture of our daughter. When I told her she, she couldn’t accept that. I started to explain that she and I are married and have two children. That was too much for her. I gave up explaining things. I decided to let her senses go to work.

I took her by the hand to the hallway with the photos of her parents and grandparents. I showed her the picture of her mother taken around the time of her marriage. I told her who she was. She was taken with it as she usually is. We talked about her mother a few minutes. Then we went to the family room where turned on the soundtrack for My Fair Lady. I know she likes that and thought it might jar her memory.

I picked up her “Big Sister” album that her brother made for her. I showed her the cover photo. She didn’t recognize the two children. I said, “This little girl is Kate Creighton.” She said, “That’s me?” I said, “Yes, and this is your brother Ken.” I started to say more when she noticed the photo book of her father’s family. The cover has an ink drawing of the house in which her father grew up. I told her about the house and then opened to the first page of photos of her grandparents. Rather than reading the text, I just told her about her grandparents.

As we were getting started, she heard he song “With a Little Bit of Luck” playing in the background. She started moving her hand to the beat of the music and sang along with the lyrics of the title each time they came up. She asked me to stop talking about the photos for a minute so that she could listen to the music.

Between the photo book and the music, Kate started feeling more at ease. Before long, the doorbell rang. It was our sitter. I told Kate it was Cindy who was taking her to lunch. She looked puzzled. Then Cindy walked in, and Kate responded enthusiastically. That put me at ease. I was getting especially concerned about leaving her in such a confused state. I quickly gathered my things and left for Rotary. When I got home later, Kate was resting. Cindy told me that everything had gone well.

Yesterday was another day of ups and downs. Some of it was humorous. As I opened the car door for her after lunch, she said, “Take off your glasses.” I did. She said, “No, that doesn’t help.” I hope I can get through this without developing a complex about not being handsome.

The day started well. She was up early again. She did have one unpleasant experience. She looked at herself in the mirror and said, “I’m ugly.” I said, “I think you are beautiful.” This has occurred several times before, but her reaction this time was the strongest I have seen. The problem is her weight gain. She is forty to fifty pounds heavier than she was when she was diagnosed. Most of the time she doesn’t seem to notice the change. Twice in the past two days she has commented about drinking with only one straw instead of her usual two. She believes that will result in her drinking less.

We went to Panera but stayed only long enough for her eat her muffin. She worked on a puzzle while eating and got frustrated when she couldn’t go any further. She had completed all but one piece. She couldn’t see it because it was on top of the other pieces. Anyway, we went home where she got on the sofa for what I thought would be a short rest. Instead, she picked up her iPad and worked puzzles for the next thirty minutes before we left for lunch.

On the way home from lunch, we stopped by Target to buy candy for Halloween. That turned out to be a bad idea. I didn’t take into consideration that the candy is at the back of the store. That meant a long walk for Kate. She was ready to leave shortly after entering the store. We came back come where she rested in her recliner for almost two hours.

She went to sleep but woke up a short time before we went to dinner. I asked if she would like me to go through one of her photo books with her. She did. I pulled a chair beside her recliner, and we began. It wasn’t long before we slipped into a conversation about our lives together. We talked about our courtship and getting married. We also talked about our feelings for each other. It was a very tender moment. I recorded about fifteen minutes of it.

Before leaving for dinner she went to the bathroom. When she came out, I told her we were going to dinner and then to a musical performance at our local art museum. I helped her put on a different top that I thought would be more appropriate. Then I told her she looked beautiful. I followed that by saying, “Do you know that you are the most important part of my life.” She was unusually emotional and broke into tears.

All the way to dinner, she was concerned about being with other people last night. She said things like “I hope I don’t embarrass you.” or “I want you to keep me from doing something stupid.” I found it hard to believe that she would have remembered my telling we were going out after dinner, but maybe she did.

At dinner, she did something unusual. She wanted me to sit beside her in the booth rather than across from her as I usually do. I was glad to do that but concerned about her insecurity. We had a nice meal. By the time we were finished, she seemed fine. We went to the concert, and she got along fine. It was a “concert and conversation” with Peter Buffet, Warren’s son. Apart from being a musician, he and his sister work run the foundation established by his father. He spends most of his time doing philanthropic work, hence the reason he was here for United Way. I was amazed that Kate followed at least some of the things. I could tell by her reactions to what he said. She wouldn’t have gotten the details, but she understood isolated remarks. Afterwards, she said, “You’re gonna have to explain this to me.”

As we left the concert for our car, she asked where we were. I told her we were at the museum. She wanted to know the city. I told her it was Knoxville. In the car, she said, “Are we in New York?” I told her we were in Knoxville. She repeated variations of this question all the way home.

At home, she spoke quietly as though others were here. I told her we were the only ones here. She said, “Are you sure?” She was still confused about where she was, but she was happy when she went to bed.

Posted on

“Hey, What’s Going On?”

It was never my intention to write a new post every day; nevertheless, I have rarely missed a day since launching the blog almost two years ago. I have the impression that some of my readers have come to expect this. Thus, I worked my way into a self-imposed deadline of 9:00 each morning to post something new. Over the past week or so, I have missed at least two days. On other days I didn’t add a post until late (after 9:00 a.m.) in the day. I started this post at 3:00 p.m. yesterday and didn’t get very far.

So what’s going on? The answer is a lot, and I won’t be able to capture all of it. For the most part, nothing new has happened except that she has required more attention. My best writing time is in the morning, and she has gotten up early several times. Each time she has gone back to bed and rested a little longer. In those cases, she has gotten up for good earlier than I would normally wake her. We’ve made it to Panera two times since Saturday.

Part of the problem relates to the increasing difficulty she is having with her jigsaw puzzles. As a result, she spends less time with her iPad. That has a direct effect on how long we stay at Panera. It is similar at home. She starts to work on her puzzles. She needs my help. That demands my attention. It isn’t long before she wants to quit. Then she doesn’t have anything to do.

Her photo books have come to play an even bigger role in occupying her time. That also means occupying my time. I could, of course, let her look at her books by herself; however, I know that she can’t remember the people or the events surrounding each photo. In addition, she can’t read. I need to read for her and do it in a way that sounds like I am talking to her and not just reading the text. I enjoy doing this. I think of it as quality time together.

Another result of her not using her iPad as much is that she has been going to bed earlier. She gets frustrated with it and doesn’t want to do anything else. Going to bed is easy. She still doesn’t go to sleep right away. It can be well over an hour, but I believe that change has meant she wakes up earlier in the morning. On the whole, I have found her behavior and our daily routine to be more unpredictable. These changes effect the time to write about what is happening or to take notes for later. So that is why I my blogging has been less predictable than usual.

It also makes me wonder about the future. I am doubtful that Kate will become more predictable. Until she is much less active than she is now, I could have my hands full.