“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.

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.

Decline, Sadness, and Dependency

Yesterday I saw the following tweet from another caregiver, Jennifer Fink, who has a podcast called “Fading Memories.”

Watching Mom decline & lose the person she was is a constant source of low grade grief. That’s why support is crucial for #caregivers. I get a lot of advice & inspiration from my #podcase guests. I hope sharing that helps all of you.

I wrote a reply in which I agreed that the hardest part of caregiving for me is just that, watching Kate’s decline. I went on to say that I have been sustained by the knowledge that she needs me. That has been especially true the past two days.

On Wednesday, Kate was especially warm and friendly to our sitter when she arrived. It appeared that she thought Cindy was a long-time friend whom she hadn’t seen in a while. Kate was lying on the sofa and got up to give her a big hug. I chatted with them a few minutes before leaving and was happy to see that didn’t seem disturbed when I left.

When I got home, the situation was different. I heard the two of them talking as I walked in. Cindy said, “There he is.” Kate had been asking about me. She beamed when she saw me but wasn’t very emotional; however, after Cindy left, she told me how glad she was that I was back and that she feels better when we’re together. This is not unusual. She has expressed this feeling many times, but now I sense a deeper recognition on her part that she is very dependent on me.

Yesterday afternoon, we went for haircuts. I helped her out of the car and was holding her hand as she stepped out. In a second she looked afraid like she was lost. I said, “Are you all right?” She said, “I looked around and didn’t see anybody I knew and didn’t know where you were.” She was almost in tears but made a quick recovery as she realized I was with her. It surprised me because it happened so suddenly, and I was holding her hand the whole time.

After finishing with Kate, the stylist walked Kate to the front where I was waiting. I got up to meet her. She hadn’t seen me yet and was peering all around looking for me. When she saw me, she broke down in tears. I walked to her and gave her a hug as she cried. Then, talking to the stylist, she said, “I wouldn’t want to live without him.” (I don’t know that I mentioned it before, but sometimes I sit in a chair next to her as she gets her hair done because she has been uneasy.)

Something that is a bit more typical occurred this morning. As I was finishing breakfast, I heard her say something. I got to the room as she started to sit up in bed. She wanted to go to the bathroom, but first she said, “Where am I?” This began a twenty-minute period during which she asked that or “Why am I here?” multiple times. When she asks, I always tell her the truth even though she has difficulty believing it. I feel that telling her something else could be just as problematic. I am going to think of a way to redirect her attention. That may be the best way to handle this.

I ended up showing her a picture of her mother and taking her to the family room to see if anything would jog her memory. She liked what I showed her, but it didn’t make her feel any better. She asked what she “should do now.” I told her she could go back to bed. That was exactly what she wanted to do. I asked if he would feel better if I brought my things to the room and stayed in the room with her. She said, “Oh, yes. Thank you.” I put on an album of cello adagios, and she has fallen asleep.

Often there is little I can say to comfort her. I think just being with her and talking in a comforting tone of voice works better than anything else.

These experiences have an impact on me as well. They remind me that I am her “security blanket.” I think of that as a challenge, something to live up to, and that overrides any sadness I might feel.

Feelings of Insecurity and Appreciation

Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.

It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.

When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”

After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.

Today is starting the same way.  While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.

When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.

After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.

It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.

An Example of Eyesight Problems and Dependence

The other day I commented on my concern about Kate’s eyesight. At Casa Bella the other night we experienced another example of the problem. In this case, it illustrates the impact it can have on her and also her dependence on me.

The room had been rearranged to accommodate the needs of the various sized groups. The table for our group was set up for nine. That immediately caused me to wonder how Kate would adapt to a larger group. More people at the table means it is more difficult for her to understand the conversation. That makes the whole dining experience less comfortable for her.

I have always seated Kate on the side of the table that would give her the best view of the musicians. This time, however, her side was close to the back wall of the room, and she would have been in the middle with two people on either side of her. I decided it would be easier for her to get in if she took the side with her back to the musicians. The way the table was positioned I thought she could easily turn to see them as they performed.

Of course, there was no problem during the first hour before the music started. We were able to order and eat our meal while conversing at the same time. Once the music started, Kate turned her attention to the musicians. It wasn’t long before I noticed that she had a worried look on her face. She began to look around the room in all directions. I realized that she had lost sight of me and was concerned. She turned to the man beside her and said, “Have you seen my husband?” He didn’t hear her, so he didn’t respond. I reached my hand across the table and touched her arm. She looked across the table but didn’t recognize me. I grasped her hand. She looked more closely. Then she realized it was me. She heaved a great sigh of relief. I don’t know that anyone else observed her, but she was very noticeably disturbed when she didn’t see me and equally relieved when she finally did. This was another occasion when I felt like I will soon need to change our seating arrangement. I am going to try to hold off a little longer while I consider what is best for Kate. At the moment I still think a table for two would be best in the long run.

Right now there is something else I am thinking about. Casa Bella is preparing to celebrate its eightieth anniversary. They are planning a kickoff dinner in September and have made arrangements with the city to block off the street in front of the restaurant for a special Italian dinner. There won’t be any seating in the restaurant itself. I have made reservations, but I am concerned that being in such a large crowd might be overwhelming for her. I imagine they will have musical entertainment, but it won’t be like the more intimate venue inside the restaurant. I have avoided situations like this for more than a year. On the other hand, we feel close to the owners of the restaurant and the people we have met at the regular music nights. I hate to miss this event.

Apart from Kate’s uneasiness because she didn’t see me, we had a great night. Kate thoroughly enjoyed the music even more than she has at a few other recent music nights. I was happy about that.

As the situation at Casa Bella illustrates, her dependence on me is increasing significantly. It is obvious in a variety of situations. One is in her expressions of relief when I come home after the sitter has been here. I also see it around the house when she doesn’t know where I am and doesn’t remember the various rooms where I might be. Yesterday, for the first time, she thought I might be leaving her in the house alone. She had gotten up early again and taken a shower. Then she got back in bed. I told her I would get her up when it was time for lunch but to call me if she needed me. She looked scared and said, “You’re not going to leave me alone, are you?” I said, “I would never leave you alone. I will be in the kitchen.” She was greatly relieved.