Change is Ever Present, But Some Things Remain the Same.

Much of my recent posting has focused on the changes occurring in our lives. That is true, but I don’t want to mislead you. Some of the best things are still with us. I can sum it up by saying this. Kate continues to be the same kind, thoughtful person she always was. As a result, the strength of our relationship hasn’t diminished in any way. In fact, I would say it is stronger than ever.

Last week, I watched a video lecture by David Brooks recorded during his visit to Chautauqua in 2018. A section of his talk dealt with love and referenced the following quote from Corelli’s Mandolin by Louis de Bernieres.

Love itself is what is left over when being in love is burned away. And this is both an art and a fortunate accident. Your mother and I had it. We had roots that grew toward each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were part of one tree and not two.

I think this applies to our relationship as well as most other successful marriages including those of Kate’s and my parents. We had a good marriage before Alzheimer’s, and our roots “grew toward each other.” Now I have discovered that we are “part of one tree and not two.”

There are a number of reasons “Living with Alzheimer’s” has been less stressful for us than for many others. The nature of our relationship has to be one of them, and it has not deteriorated. That could change at any time. Alzheimer’s has changed our lives significantly, but I remain optimistic.

There are many illustrations of the way we have handled the trials accompanied by this disease. Let me mention several that have occurred in the past week.

One night early last week, I had just gotten out of the shower and was about to take a seat in a chair on my side of the bed. This is a relaxing time of the day for me. Kate was sitting up in bed while watching a YouTube video of Rachmaninov’s Piano Concerto No. 2. I assumed she was more engaged than usual because she was sitting up. Normally, she is lying down with her eyes closed and listening. Before I could sit down, she motioned to me to join her in bed. It was about 45 minutes before I would normally go to bed, but I got in bed.

It turned out that she was experiencing two conflicting emotions. She was enjoying the music, but it was also a moment when she was disturbed by not knowing “anything.” She wanted my hand and held it firmly as she leaned against me. I felt it was another time when talk was less important than simply being with her. Within 10-15 minutes, her anxiety was gone. We watched the entire concerto, and she wasn’t sleepy. We followed that by watching a performance of Tchaikovsky’s Piano Concerto No. 1. We were much later getting to sleep than usual but it was another case in which music and the comfort of our relationship solved a problem.

One morning two days later, she woke me around 5:00. She had apparently had a dream in which she had some obligation that morning. She wanted to know what time she had to be there. I told her I didn’t know of anything that she needed to do that morning and that she could relax. For a very brief moment, that satisfied her, but then she asked again, and again, and again. Finally, I suggested that I put on some soft music. I have a variety of music for times like this and turned on the audio. Then I put my arm around her and held her for over thirty minutes. During that time, she relaxed and forgot all about her obligation. She wasn’t asleep but at ease, and I got up for the day.

As she grows increasingly dependent, her desire to be with me seems to increase as well. The past few days she has talked about liking to be with me. On at least one of those occasions, it followed an afternoon with the sitter even though I was in the house most of the time. Before the sitter arrived today, I mentioned that I was going to the grocery store. She told me she didn’t want me to leave. I told her I wouldn’t be gone long and wasn’t going to leave right away but would be in the kitchen taking care of a few things. She accepted that, but the look on her face suggested she didn’t want to.

Yesterday morning was one of those times when she didn’t recognize me as her husband or know my name, but she asked to hold my hand. She said she didn’t really need it, but it made her feel better. She wanted to go home, so we went for a ride in the car. It wasn’t long before she said, “I don’t know how he does it.” She said a few related things, and I asked who she meant. She looked at me and said, “You.” This was far from the first time she has referred to me or herself in the third person. When we returned home, she wanted to tell me something but couldn’t express it. I’ll never know exactly what it was, but I got the impression she wanted to tell me what it feels like not to know anything. I don’t know that I would be able to express it either. I do know that she hasn’t forgotten me as a person whose company she enjoys and on whom she is very dependent.

As an aside, I think she has remembered my name and that I am her husband more often as her dependence has increased. When I got home to relieve the sitter two days ago, the sitter told me Kate had asked about “Richard” off and on the whole time I had been gone. Interestingly, while we were eating lunch today, she asked, “Where is my husband?” several times. We had been talking, but there were moments of silence. She apparently looked at me but did not recognize who I was and felt uneasy. Yes, changes are occurring, but some very important things remain the same. Our relationship, music, her photo books (especially the “Big Sister” album), and The Velveteen Rabbit are among them.

Feeling Insecure, Dependent, and Appreciative

The past few days Kate has been unusually insecure, at times almost helpless. It has been evident in both her behavior and expressions of appreciation to me. Most of these signs are not new but the degree of her emotions has seemed more intense than in the past.

Thursday morning, I had an appointment for my labs in advance of a doctor’s appointment  later this week. She was with me the entire time except when I stepped into the restroom to give them a urine sample. When I returned, she was very relieved to see me. As soon as we got in the car, she said, “I feel better when I am with you.”

That afternoon, she had an appointment with her stylist for color and a shampoo. I used to sit in the waiting area up front. In the past year or so, I have taken a seat across from her about 10-12 feet away because she sometimes feels uneasy when she doesn’t see me. That worked fine. This time she wanted me to stay closer to her. Once I stood by her, she wanted to hold my hand and did so until time to move back to another chair for the stylist to finish. After making the move, she wanted to hold my hand again.

I was at home most of the time on Friday while the sitter was here. After almost three hours, she called to me and walked into the kitchen. She had a pitiful look on her face and asked, “When will you be able to be with me?” I told her I had a few other things I wanted to take care of, and it wouldn’t be long. She wanted something to eat. I fixed her a slice of cheese toast and a Diet Dr. Pepper. (Those her know her well may recall that she has never liked the diet version, but that’s another change in the later stages of Alzheimer’s. I buy only diet now.) I finished up what I was doing and let the sitter go early again. This is becoming a frequent thing, and it has never kept me from doing anything I had to do. It makes Kate feel better, and that makes me feel better as well.

During the weekend, she was excessive in expressing her feelings about me. She thanked me for helping her so much and emphasized that she couldn’t live without me. Being appreciative is not something new, but the way she has expressed it recently suggests to me that she has a greater sense of the seriousness of her problems than before. I can’t help thinking that having less stimulation during the pandemic has played a role by giving her more time to focus on what she can’t do rather than simply enjoying what she can.

Kate Was Up Early Again This Morning

Kate called me at 7:15 this morning just as I was about to begin my walk. She was wide awake. I commented on that and asked if she would like me to fix her some breakfast. She nodded, and I proceeded to get her up and finish her “morninglies” (with thanks to Tom Robinson for introducing me to this term) before heading to the kitchen.

Mornings are her most likely times to be confused. I use that term when she seems bothered by not knowing where she is, who she is, who I am, or what to do. I think insecure was a better word to describe how she was this morning.  As she got out of the bed, she said, “Help me; I don’t know what to do.” . She repeated variations of this multiple times before we left the bedroom.

It is not unusual for her to ask, “What do I do?” when we enter the bathroom. Another time recently, she said, “You’ll have to tell me what to do because I’ve never done this before.” Today, I had to do more than explain. She seemed worried that she would fall as she sat on the toilet. I had to put my arms around her and let her weight rest on them. I supported her until she was seated.

She enjoyed her breakfast of apple juice, a small bowl of blueberries, and two slices of cheese toast. She finished more quickly than usual, and we went to the family room where I thought we might read something. I wasn’t surprised when she looked tired, and I asked if she would like to rest. She said, “May I?” (That is something she says frequently. She also asks if she can take off her shoes. She is very respectful, at least 99% of the time. It is more like I am the “person in charge” rather than her husband. Of course, I am both, so I understand. She generally thinks of me as older than she is. She commented on that yesterday, and I asked how old she was. She said she was eighteen.)

She started resting at 8:40. It is now 10:20, and she is sound asleep. Fifteen minutes ago, she opened her eyes and said something I didn’t understand. This is a day for the sitter. I should have plenty of time for us to have lunch before she arrives at 1:00. I plan to make a quick trip to the grocery and then return home for a walk. The balance of the afternoon I plan to remain at home and work on my computer.

Feeling Needy and Expressing Appreciation

Kate’s dependence on me continues to increase. That has been even more evident in the past few days. In particular, I have noticed that in her desire to have me physically near her. I think I mentioned that twice in the past few days she has wanted me to come to bed earlier than I normally would. That happened again two nights ago, and she wanted to hold my hand. I’m the kind of caregiver who wants to do everything I can to make her happy and secure, but often it’s just holding her hand that gives her the comfort she needs.

She is comfortable with our sitter, Mary, but twice this week Kate hasn’t wanted me to leave her. Friday she looked sad and frightened when I told her I was going to run an errand and would be back soon. After returning, another incident occurred while Mary was with still here. I was in the kitchen making phone calls when I heard her say, “Where are you?” She had been resting in the living room with Mary and gotten up to go to the bathroom. When I reached her, she was in the hallway outside our bedroom looking for the bathroom. I didn’t ask, but I am sure she didn’t want to ask Mary where it was.

Once we were in the bathroom she told me I was the only one she knew who would always help her. I told her I was glad to help, and she could call me anytime. Then she said something I found interesting but don’t remember her exact words. She conveyed that there are times when she doesn’t see me but calls for me in her “head.” That got my attention because she almost never tells me anything about what she thinks. I would love to know more.

It was also a time when she seemed rather clear-headed. She used my name and referred to our marriage. She went on to express her appreciation for the way I look after her and said, “You know I could not live without you.” The way she said it was not like a routine statement of appreciation, but something much deeper. It was just one of any number of other things that let me know how aware she is of her situation and our relationship. It is also a powerful motivator for me to provide her with the best care that I can.

Yesterday morning she was not so clear-headed. She didn’t know where she was or who I was. She was concerned though not seriously disturbed. I asked if she were ready to get up. She said, “I don’t know.” I told her there had been other times when she was confused in the morning and that it helped to get up. She asked how she could do it. I told her I could help and gave her instructions. As usual, I held her hand as we walked to the bathroom, and she said, “I don’t know who you are, but I like you.” Five or six years ago, I would have been sad. At this point, I feel encouraged that she still retains her feelings for me. May it always be.

“Happy Moments” at Unexpected Times

As a caregiver, I put a lot of effort into thinking about ways to entertain Kate. I am often successful. I know that she responds to music and has some favorites to which she is especially drawn. Her family is also important to her. Showing her photos and telling her or reading about them is usually of interest. Taking “tours” of the rooms in our house is also a winner. I feel fortunate to have a toolbox with a variety of things that work. Of course, there are times when I am less successful than others, but there are also times when I don’t have to work at all to have “Happy Moments.” That was true on Monday of this week.

It was about 6:45. I had a load of clothes in the washer. I was looking forward listening to my book while walking, but first, I wanted my breakfast. The eggs were on the counter, and I was about to put the oil in the frying pan when I heard Kate say, “Hey.” I started to the bedroom and found her in the hallway. She had gotten out of bed and was looking for me. Although she seemed wide awake, she wasn’t sure where she was going and wanted my help.

I took her to the bathroom. Like most days, she wanted me to give her directions on everything. Sometimes when this happens, she resists my help. Not this time. She was very accepting but in a very natural way. She didn’t seem especially insecure and expressed no special emotion.

Of all the things I have worried about helping with bathroom activities were near the top of the list. Toileting and showering involve the most personal assistance, and I have resisted diving right in. Thus, it has been a long, gradual process. Yesterday it was clear that we have found our way to a comfortable place for both of us.

Although Kate always seems to enjoy her shower, she usually resists my effort to get her to take one in the first place. She seemed so compliant that I said, “This seems like a good time for a shower. Would you like that?” She paused a moment and said, “I don’t know.” That gave me the opportunity to be more assertive. I said, “I think that would be a good idea. I’ll start the shower for you.” That is all it took.

One of the things I’ve discovered is that once in the shower, she likes me to play an active role in bathing her. That works for me as well since it is easier than giving her instructions, and we can finish more quickly. She plays the role of director, making sure that I haven’t missed any places.

Kate enjoys the drying off process even more than showering. I have learned it is better to begin in the shower. That works better than walking out into a cold bathroom. Then I take her to the bedroom and put her in a chair where we finish up. At this point, she is fully relaxed, and I often joke that she is at “Richard’s Spa.” She often directs me to places that I may have missed, especially between her toes. I rarely get the deodorant on just the way she wants it. She lets me know right away. This part went swimmingly well. She seemed to be luxuriating in being cared for.

As she does on most shower days, she wanted to get back in bed. Since it was still quite early, that was fine with me. I did wonder what she might be like a little later. Sometimes her mood can change after resting or going back to sleep. The whole process of getting her up, showered, and back in bed had been another “Happy Moment.”

As someone who likes to eat very shortly after getting up and dressed, I was ready for my breakfast. She wanted me to stay in the room with her. I asked if it would be all right if I ate my breakfast and then came back. She was fine with that. After eating, I stayed with her until she woke up about 9:00. She was fine except for wanting me to take her home. I told her I would be glad to and had her clothes all ready for her. I don’t often mention it, but we also have many humorous moments. One of those occurred after she was dressed. I got her hairbrush, and as I did, I thought of an old song our grandchildren used to like, “Where is my Hairbrush?” Kate and I always thought it was a funny song as well. I started to sing it. Kate laughed as I forgot the lyrics. Then I went to Google and played the original song. We both got a kick out of it. It’s just one little thing that helped sustain an already good day.

Her eagerness to go “home” made dressing a simple matter. We were at Panera before 9:45. She worked on her puzzles, ate her muffin, and I took her home. She rested less than an hour before I suggested we go to lunch. She was receptive. As we walked out of the house into the garage, we faced one of our few rough patches during the day. It was bizarre. She was disturbed. It was difficult to understand her. It seems she had some connection with a group of people who had killed a woman and that she hadn’t told the authorities. She felt guilty. When I asked for an explanation, she didn’t want to talk about it. Nothing more was said, and, moments later, she was fine. I’ll add this to my list of things I’ll never understand.

We had a nice lunch and went back to the house where she rested for at least two hours. Then I asked if she would like for the two of us to look at one of her family photo books. She did, and we spent almost an hour reading from a book about her mother’s family. I didn’t try to go through the photos. Instead I read the narrative portion that focuses on biographical information about her grandparents and Battle Creek where her mother was born. She loved it, and although we revisit this album frequently, I loved going through it with her. The lunch and afternoon turned out to be another “Happy Moment.”

The rest of the day also went well except for a brief period after coming home from dinner. Kate worked on her iPad for a short time and became frustrated. She reached a point at which she didn’t know what to do at all. I suggested she take a break and get ready for bed. She was happy to do that. Her confusion continued as she took her medications. I gave them to her one at a time, but she didn’t know what to do with them. She started to put the first one in her glass of water. I explained that she should put it in her mouth and then use the water to wash it down. After the first two pills, she caught on. Then I took her to the bathroom and helped her into her gown. Once she was in bed she was quite relaxed.

The day was a good one. It also captures the way we can shift back and forth between good things and trying ones. I am grateful that most of our days include a preponderance of “Happy Moments.”

Examples of Kate’s Decline

Each morning I find myself wondering “What’s in store for today?” Even though most days go well, I am always on alert for problems. That’s how I was two days ago. I knew the sitter was to arrive at 1:00 and that I had an appointment to donate platelets shortly after that. I wanted to get her up in time for us to have lunch together. Around 9:00, I was encouraged when I heard her talking . I went back to the bedroom. She greeted me with a smile and chatted a few minutes. She said she was waiting for someone to take her home. I told her I would be happy to do that. She said that her mother would do it. Then she said it was “that guy” whose name she couldn’t recall. I asked her if she was ready to get up. She wasn’t. I told her I would be in the kitchen and to call me when she was ready. I was going to give her another hour or so before going in again, but less than thirty minutes passed before I heard her say, “I’m here.” She was ready to go home.

I took her to Panera for a muffin and then to lunch. As my previous posts about her sleeping later suggests, she gets very tired. She had taken her place on the sofa in the family room before Mary arrived. She was still there when I returned. During the past two or three weeks, with a couple of exceptions, she appears to have rested the entire time the sitters were here. Although she is comfortable with both sitters, I have the impression that she is going through a stage when she feels especially dependent on me and simply waits for me to come home. I am sure that is true with respect to using the bathroom. I’m only aware of one time she has gone to the bathroom while the sitter is here. That was recently when the sitter helped her get up and dressed after she had slept late.

I see this dependency in other small ways. She likes me to sit beside her when we sit in a booth at restaurant. The same is true at Casa Bella when we are seated at a table for six or eight. She wants to hold my hand more often when we are walking. She wants more instructions about what to do when toileting, brushing teeth, taking a shower, getting ready for bed. She hasn’t given up all signs of independence, but she is coming close to that.

She is forgetting a lot with respect to eating. She often points to the bread on the table at a restaurant and asks what it is. When I tell her, it doesn’t necessarily help. She is still a good eater, but she often fails to recognize the entree on her plate. She doesn’t recognize the salt and pepper at our neighborhood Mexican restaurant. Part of the confusion is that they are in the small Corona beer bottles, but the salt and pepper are clearly visible though not to her.

She also worries more frequently. Sometimes it involves a belief that she has an obligation of some sort. She worries about whether she has forgotten to do something. She also worries about people who have financial and health problems. The other night she talked a good while about some kind of disease that is being transmitted from mothers to their babies. She said there was a preventive medication that mothers can take. She told me she was planning to have herself tested. On the way to dinner last night, she was worried she might have done something to me that she shouldn’t. I assured her she hadn’t.

I also notice she isn’t as cheerful throughout the day. I think that goes along with her being tired. She does, however, have moments off and on during the day when she is very lighthearted and takes great pleasure in teasing me.

Taken together these things and many others are signs of the progression of her Alzheimer’s. We still have “Happy Moments,” but it is clear that I am unable to control everything. Some people suggest the disease always wins. In a sense this is true; however, I consider it a victory that we have been able to live happily, even joyfully, for so long. I intend for us to do as much as we can as long as we can, but I also recognize the reality that Kate’s decline means significant changes in our lifestyle.

Increasing Dependence

I have often commented on Kate’s dependence on me with respect to finding the bathroom, the full variety of bathroom activities, dressing, and helping with most other activities of daily living (ADLs). That continues, but I have observed other ways in which she is dependent. I’d sum it up by saying they involve my being a security blanket.

I mentioned one of those in my previous post when she didn’t want to go to lunch with the friend I had asked to take her. She has been to lunch with her on a number of occasions before and after her diagnosis, and, yet, she wouldn’t agree to go with her yesterday.

Yesterday she had a similar experience with the sitter. This one was with the sitter who has been with her more than two years. Kate wanted to rest after lunch, just fifteen minutes before Mary arrived. That’s not unusual. When I returned four hours later, she was still resting in her recliner although awake. I asked Mary if she had been there the whole time. She had. Mary said, she has encouraged her to get up, but Kate didn’t want to.

After Mary left, she asked me to show her to the bathroom. As we walked hand in hand, she expressed her feelings more clearly than she usually does. She conveyed that she liked Mary, but she said, “It’s good to be with somebody you really know.” She was relieved that I was home. When we reached the bathroom, I started to leave. Then she asked me to stay in case she needed help with anything. I frequently sense that she is at ease with me even when she doesn’t know my name or our relationship. This time, however, it seemed like she both knew me and that she was very grateful I was home.

As she finished washing her hands, I started toward the kitchen. When she came out of the bathroom, she didn’t see me and called to me. I went back to her. She was so relieved when she saw me that she was almost in tears.

We went to dinner at a nearby pizza place. Before I stepped away from the table to pay for our meal, I told her I was going to pay and would be back. I know she can’t remember, but there was no one ahead of me. In addition, The check out wasn’t too far from our table, and she has never been uneasy before. As I approached the table after paying, I saw that she had a worried look on her face and was looking all around for me. When I walked up to her, she said, “I am looking for my husband.” When she looked more closely, she recognized me. Again, it was an emotional experience for her.

Here is my own interpretation of what’s happening. She is sinking deeper into a state in which she can’t remember anything. That makes her afraid. I am the one who is most often with her and helps her. Of course, we also have a bond that is very strong after fifty-six years of marriage. When you put these things together, it’s not difficult to see why she might feel dependent. This has an advantage with respect to helping her with so many things. She still likes to retain some independence, and I think that is a good thing. Normally, however, she is usually receptive to me help. That makes caring for her much easier.

A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.

Another Unusual Incident

Kate and I went to opera night at Casa Bella this  past Thursday night. I approach each of these evenings with both anticipation and a small measure of concern. These nights (6:00 to 8:30) have played a significant role in our therapy for almost six years. There have only been a couple of nights when Kate didn’t enjoy herself as much as usual. Those have been within the past few months and have related to changes in our seating arrangement and sometimes being part of a larger group. Now I sit beside her. That allows me to help her more easily, especially in whispering to her when she has questions.

If I had thought much about it, I would not have been concerned at all. After all, it is the Christmas season. That meant we had a generous supply of music for the season including a “sing-a-long” with “The Twelve Days of Christmas.” The crowd was caught up in the spirit of the season, and so we were.

We engaged in a little more conversation after the program ended. The result was our getting home a little later than usual. I was eager to help Kate prepare for bed and to take my shower. That shouldn’t have been a problem, but I didn’t anticipate what was about to occur.

I got Kate to the bathroom to brush her teeth, and she got caught up in the process. She always works hard to clean between her teeth even though I haven’t been unable to find anything. (I sympathize with her since I have a space between two of my teeth that seem to have nothing between but bothers me nonetheless. My dental hygienist believes it is where a crown meets the real tooth.) She took more time than usual, at least twenty minutes. She wanted me to watch what she was doing in case she wasn’t doing it the right way. This involved my watching her go from tooth to tooth using her fingernail like dental floss.

When she finished, she washed her face and arms. That wasn’t unusual except that wanted me to watch carefully. She wanted me to know exactly what she was doing. She put great emphasis on the upper portion of her forehead where her hair begins. During this process, she continually pointed her fingers toward me so that I could see what she was getting out. She sometimes refers to “them” as “thingies.” I’ve never been able to see anything but acknowledge that I have seen them.

When she got to the bed, it was time to work on the toes. She runs her fingers up and down between each toe and can repeat this process several times. That night was one of those times. Then she wanted me to do it. I complied. When she got in bed, she began to pull her hair. Several times I started to step away from the bed. Each time, she called me back saying, “I want you to see this.” This incident was not unique except for the duration. I finally got to shower almost an hour and a half after getting home. She seems to be getting more obsessed about pulling her hair, picking her teeth with her fingernail, and cleaning between her toes. I wonder how far this can go.