“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.”

Reflecting on Our “Good Days”

At this stage of Kate’s Alzheimer’s, I think a lot about the amount of quality time we have left. I don’t mean that I bask in sorrow. I don’t, but I recognize she is in the last stage when we are likely to make more adjustments to our lives than we have done before.

At the moment, however, I am particularly struck by the “Good Days” we have. It not only surprises me; it keeps my spirits up. We had two of those days this weekend. I would like to be able to take credit for them, but I think the fundamental cause was Kate’s mood. She was in very good spirits both Saturday and Sunday.

I might also expect that her good mood was accompanied by a lack of confusion, but that isn’t so. Saturday, she appeared to be rather clear-headed except for wondering where she was. I don’t recall her asking my name. That happens off and on. Sunday morning, she was very confused. She didn’t know my name or hers and couldn’t remember them well enough to repeat them. What made me feel good was that she didn’t seem disturbed at all about not knowing. I am thankful that is typical.

In addition to her good mood, our time together seemed special. Our obligations were minimal. The only official commitment was our dinner reservation Saturday night. She was up earlier than usual both days. We didn’t have to rush. That kind of schedule is the best for her and, thus, for me as well.

We also had a couple of special moments on Saturday. Both occurred after resting in the afternoon. One of those was my reading her a portion of a book about her family’s wedding veil. I’ve read it to her multiple times in recent weeks, but she is always taken with it. She did get tired and wanted to rest before we got well into it.

The second experience was after her second rest. She commented on a few things in the family room that led me to suggest that I show her some of the other rooms. On the way to the back of the house, we passed several photos and stopped to look at them while I told her a little about each one.

The next stop was our guest bedroom. Of course, she had no recollection of it at all and liked what she saw. She got tired of standing and asked if she could sit in a rocking chair. I saw a photo album of our children during their earliest years. We spent quite a while looking at it and never got to another room.

When we finished, it was time to get ready for dinner. This was the only moment in the day that could have become a problem. I had planned a nice Valentine’s dinner at one of the restaurants we usually visit for lunch. I suggested we change clothes and had picked out exactly what I wanted her to wear, but she didn’t want to change. I told her we were going out for a nice dinner, and I was going to put on something a little nicer. She was fine with that but wasn’t going to change. I didn’t push her.

A few minutes later after I had changed, she asked what I wanted her to wear. I told her I would get something and brought her the clothes I had picked out. She had apparently forgotten the conversation we had just had a few minutes before. I helped her change, and we were off.

The dinner itself went as I had hoped. We were welcomed by the manager, our server, and another server who sometimes works as a hostess. They had selected a corner table that was perfect for the occasion. The meal itself was quite good. In addition, a couple we know from our music nights at Casa Bella were seated at the table next to us. I don’t recall our talking about Valentine’s Day at all or anything else especially romantic. We just had a good time together.

Kate was up early Sunday morning. We spent a little less than an hour at Panera before returning home where she rested an hour before leaving for lunch. The restaurant was unusually busy. Consequently, it took longer to be served, but we had a good time. I haven’t said anything in a while about her asking Sinatra’s name when she looks at his mug shot, but that hasn’t let up. She is well-aware that she repeatedly asks and wonders why she can’t seem to remember it, but she doesn’t appear to be very disturbed.

She rested after we returned home with music playing as usual. She awoke about an hour before dinner. I suggested we take a look at a few things around the house. We began with some photos in the family room. As often as she has looked at them, I am amazed and happy that she enjoys them just like it was the first time to see them.

From there we went into the living room and dining room where I showed her a number of things that came from her parents’ home. I enjoy telling her the stories behind each of the items, and she was entranced. It was another special moment.

We are both fortunate that repetition has not diminished the pleasure for either of us. She can’t remember, so it is always new. I like telling her things she can’t remember and seeing her reaction as I tell her. I read a lot about other caregivers’ experiences and know that many of them are bothered by so much repetition. I wish I knew how to help them. My experience is different. Whatever the reason, we have been able to maintain a relationship that has been important in helping both of us adapt to all the changes we have had to make. She feels dependent on me and is normally responsive to the things I want her to do. I want to deserve her trust and work hard to make her life as happy as I can. One of the ways I can do that is to answer her questions and do the things she enjoys so much. I believe each of us loves the other more now than at any other time in our marriage. I think that carries us a long way.

I continue to be mindful of the pleasure she and I can experience through her intuitive abilities. I like to think this is something from which other caregivers could benefit to make their loads lighter. At the same time, I recognize the likelihood that many of them are facing other challenges that we have not faced. Among those would be health and financial constraints. I feel for them and am grateful that at this late stage of Kate’s Alzheimer’s, I see little, if any, loss of pleasure that comes from music, beauty, and associations with family. How long will this last? We will see. I am hopeful that it will continue for some time.

Diversion Seems to Work (At Least Yesterday)

Yesterday, Kate woke up and wanted to go home. We went to lunch. She forgot about home and didn’t mention it again. On a number of other occasions, I have found that going out for a meal is an effective diversion technique.

We had a sitter during the afternoon. When I got home, Kate was resting. I spoke to her, and she talked with me as though I were entering a dream with her. She thought someone had had a baby and asked me about him. At some points, I thought she was talking about having had a baby herself. Other times, it seemed like it might have been a son or daughter though she never said specifically. She was excited, and said, “We have a baby.” She asked “his” name, and I gave her the name of her father. She was thrilled. Not long after that, she asked “her” name. I gave her the name of her mother. She was equally excited. She continued talking about the baby after we were seated at the restaurant. She wanted to know when she would be able to hold it. She also wanted to know where the baby was. I found this to be a challenging conversation. Once I had started to go along with her, I found myself having to get more creative in answering her questions. I decided it might be good to redirect her attention and suggested that we go to dinner. She wanted to rest a little longer and asked if the doctor said it was all right. I told her he said it was fine, and we left for our Friday night pizza.

Her enthusiasm continued in the car and at the restaurant. It lasted so long that I thought the conversation might continue even after we got home. At one point, she asked if the children had called. I told her they hadn’t and explained they had been busy. She couldn’t believe they hadn’t even called and said, “But it’s our baby.” Fortunately, when the pizza arrived, her attention drifted to eating. I didn’t hear a word about the baby after that.

No “Sleeping-In” Yesterday

Following two consecutive days of not wanting to get up, Kate awoke early yesterday and wanted “to get out’a here.” Except for believing she was in an unfamiliar place, she was in a good mood. For me, one of the good things about her wanting to get away is that it makes it easier and faster to get her up and dressed. We were at Panera before 10:30. She worked on her iPad but focused mainly on her blueberry muffin and wanted another. I told her we would be going to lunch in thirty minutes and asked if she could wait. She was agreeable.

The afternoon was our usual one. She rested a couple of hours. Then I suggested we look at a photo album of pictures taken when our children were pre-school age. We did that for a while before our daughter called. We had a nice conversation and Kate handled it well. After the call, we returned to the photo album, but Kate wanted to rest a little longer.

When I suggested our going to dinner, she didn’t hesitate getting up. That is normal. I don’t recall her ever having trouble getting up after resting in the family room in the afternoon. I wish I could say that about the morning when she is in bed.

She was confused about where she was as well as who I was but wasn’t disturbed. She asked my name and asked if we would be coming back for the night. She also said a few other things that made it clear she thought we were in someone else’s house.

At dinner something came up that made me mention our marriage. Kate was shocked. I was surprised at her reaction because we had been talking so comfortably about our relationship. It wasn’t simply that she was shocked. She couldn’t imagine how it was possible that she could have forgotten something like that. Fortunately, I was able to divert her attention. She was fine after that, but I felt bad. I intend to be more careful about that in the future. I think I have been unconsciously trying to keep that memory alive. Now I am beginning to believe that it may be time to let it go. I’ll just assume that she doesn’t remember and not try to remind her. There are enough incidental reminders when we browse through her photo books and interact with other people.

We had one of those middle-of-the-night incidents at 1:30 this morning. I woke up as Kate sat up on the side of the bed. I got up and went around to her side to help her up. She seemed wide awake and cheerfully greeted me like someone she might have recognized but not known. It wasn’t long before she said, “Who are you?” I told her my name but said nothing of our relationship. She didn’t ask.

I asked if she wanted to go to the bathroom. She didn’t. She asked about “the others.” I told her we were the only ones “here.” She seemed surprised but didn’t question me. I asked again if she would like to use the bathroom. She asked where it was. I told her I would show her. We usually hold hands, but she didn’t want to this time.

When we reached the bathroom, I stepped in and turned around to direct her to the toilet. She showed no interest in coming in. Instead, she was obsessed with what time she should “be there.” I never found out where “there” was, but it was important to her. I told her she didn’t need to be there until “1:00 tomorrow.” She was surprised and asked about today. I told her it was the middle of the night and that she would need her sleep to be ready for tomorrow. She went back to the question “What time do I have to be there?” We went through a repetition my standard answer and her standard question. A couple of times she asked what time she would have to leave, but her emphasis was on what time she had to be there. She couldn’t remember and kept asking.

Finally, she used the toilet. When she was finished, she noticed two pictures on the top of a nearby cabinet. One was a photo of my mom and me. She pointed to my mom and wanted to know who she was. When I told her who she was, she said, “I remember her. She is very nice.” Then she asked about my sister. I don’t have a sister but said she was fine. Then she said my sister was very nice and that she liked her. Before getting back to bed, she commented several other times about my mom and sister and how nice they were.

Once in bed, she was still wide awake for a short time. I tried not to encourage much talking, and she soon drifted off to sleep. She is still sleeping as I finish this entry. On the video cam I just saw her moving a few minutes ago, I will check on her and see if she is ready to get up. That would be nice. I don’t have Rotary today, and the sitter is coming at 1:00 rather than noon. If she gets up soon, we would be able to have lunch together. That would be a good way to start the week.

Consult with Kate’s Doctor

Yesterday, for the first time, I had an appointment with Kate’s doctor without Kate. It was a direct result of Kate’s recent desire to remain in bed rather than get up for lunch. Coincidentally, yesterday was one of those days. This was the fourth or fifth time in the past two weeks. Like all but the first time, she was relaxed and smiling. She seemed to be in a good humor. She just wanted to stay in bed. That’s what she did. I wasn’t able to get her up until after the sitter left just before 5:00 p.m., and she didn’t want to get up then but agreed after my coaxing. She had been in bed over twenty-one hours except for a brief bathroom break around 8:00 a.m. We did get out for dinner, but she went to bed before 7:30 and went to sleep quickly.

I interpreted the first incident as a case of depression. The others didn’t seem anything like that. She was just tired. On the days when she was willing to get up (ten out of fourteen), she was very tired, unsteady on her feet, and felt very insecure. These signs made me think that it was a part of the natural progression of her Alzheimer’s. When her doctor offered to see me, I was happy to accept.

It was a good visit and reminded me of why we have valued this geriatric practice for over twenty years. It is a partnership between our medical school and our largest hospital system. My mom and dad were the first of our family to go there in 1998. Since then, Kate’s mother, Kate, and my dad’s lady friend have all had physicians in the practice. We have always been pleased. There is virtually no wait time. In addition, the doctors spend a great deal of time with the patient and the patient’s family. They are especially good with dementia patients because the doctors always recognize them as the patient. In a situation like this it would be easy for a doctor to look at and speak directly to the family.

I was only there thirty minutes, but I achieved what I needed. I had sent a note of several pages describing Kate’s symptoms over the past few weeks. She had a variety of follow-up questions. I gave her my thoughts about the likelihood that Kate’s changes were just part of the natural progression of the disease. She agreed and handed me a piece of paper with a set of symptoms characteristic of the various stages of Alzheimer’s. They were expressed more specifically than what I had seen before. We focused on those for Stage 7.

7a. Ability to speak is limited to approximately a half-dozen intelligible different words or fewer in an average day.

7b. Speech ability is limited to the use of a single intelligible word in an average day.

7c. Ambulatory ability is lost (cannot walk without assistance).

7d. Cannot sit up without assistance.

7e. Loss of ability to smile.

7f. Loss of ability to hold head up independently.

Clearly, Kate doesn’t hasn’t reached any of these stages. She is losing her ability to talk as well as her ambulatory ability. Her doctor told me that Medicare eligibility for hospice begins around 7c above. I found that sobering. My impression from personal experiences is that the mention of hospice often catches caregivers off guard. It did when my mom’s doctor suggested it was time. She died a few months later. The same was true with my dad’s lady friend. She died less than a week after the doctor recommended hospice.

I don’t mean to suggest that Kate is that near the end of her life. My mom and Dad’s lady friend were much further into their disease than Kate is now. On the other hand, it is a sign that we are much closer to the end than I have sensed. This makes me think about something that I have mentioned before. I hope that Kate does not linger for long. She and I have shared the desire to die quickly. I don’t think we are unusual in that regard. I would love for her to be spared an extended period of time when she is completely bedridden or resting in a wheelchair.

Over the past few months, Kate has occasionally worried about, or at least been puzzled by, what is happening to her – why she can’t remember important things like her name or mine, being married, having children, or being able to remember how to do so many of the activities dialing of living. I wish she weren’t so self-aware. That is painful for both of us.

Ultimately, what I am concerned about is not within my control. All I can do is make her as comfortable as I can and provide her with as much pleasure as I can. It is almost 10:00 a.m. as I close this post. She is still sleeping. I really hope we will be able to get out today, but that’s another thing I may not be able to control.

Yesterday Afternoon and Evening

I am glad to report that the afternoon and evening went quite well yesterday. Kate got up from her late-morning rest and we had a very nice lunch and made it back for her 1:30 hair appointment without having to rush. Leisurely going about our daily activities works best for both of us.

We were back home before a big rain storm hit the area. It was so bad that I called the restaurant to make sure the program was still on for the night. It was. I told the woman on the phone that we would come if the rain slackened; otherwise, we would stay at home. As it turned out, the rain was lighter and we went despite the nasty weather conditions. It turned out to be fine. The crowd was a little lighter, but the program was excellent. Kate sat beside the 95-year-old woman who used to run the restaurant before her daughter took over years ago. Another couple we had not met before sat across from us. Kate didn’t participate much, but I don’t think she felt left out. We both enjoyed the evening.

During the afternoon and after we returned home, she was talkative but seemed to have more trouble expressing herself than usual. She talked for an extended period before dinner. I don’t even remember what she talked about. That may have been because I couldn’t understand her. She used a lot of wrong words and often acknowledged it. In addition, her comments were filled gestures, “You knows,” and vague words like “things,” or simply “da, da, das.”

The other talkative period lasted approximately thirty minutes as I was trying to get ready for a shower. Everything had been going smoothly. She had been in a cheerful mood the whole day. That continued as I started helping her get ready for bed. We got to the part where it was time for her to remove her pants, and she refused. I explained that she hadn’t put on her nighttime underwear. That had no impact. I tried to gently coax her and finally said something that changed the tone of our interaction. I don’t remember exactly what I said, but I apologized and suggested we step back and think about our relationship. I conveyed my love for her and mentioned that we have always respected each other and that my only desire was to help her.

She immediately changed her tone of voice and began a lengthy conversation (soliloquy). She started talking about our relationship and how much she appreciated what I do for her. Then she began to talk about how we could help a boy in need of something. I only picked up that he had a sister but little else. It was impossible for me to understand. All I can say is that she talked for thirty minutes and was strong in her belief that she and I together would be able to help him.

Alzheimer’s is Making Its Presence Felt

As if I needed further confirmation, yesterday was another time when Alzheimer’s seems to be taking over our lives. It was Monday, my Rotary day and the day our sitter arrives at noon. I turned on some music to gently wake Kate around 10:40. That should have given us plenty of time to be ready, but that was not to be.

She was still asleep when I went to wake her at 11:00. She smiled and was in a good mood, but it was also a morning when she didn’t want to get up and didn’t recognize me. I explained that Cindy was coming to take her to lunch and that I would be glad to help her get ready. She said, “I’ll get up.” This is what she said repeatedly the day before and on the few other occasions when she didn’t want to get up. I tried not to push her because she is then defiant and isn’t going to comply.

I tried some music that she liked. We even sang a couple of songs together, but she wasn’t going to get up. I accepted the fact that she wasn’t and got her a breakfast bar so that she would at least get something in her stomach.

When Cindy arrived, I briefed her on the situation. I also took her to the bedroom to show her the clothes I had laid out for Kate. I told Kate goodbye, and she was quite accepting of my departure.

I had intended to go directly to the Y after Rotary. Instead I put in a call to Cindy to see how things were going. She didn’t answer. I decided to drop by the grocery for a few breakfast items and then go home to check on Kate. When I arrived, I discovered that Cindy had gotten her up and dressed and had given her a breakfast bar and a Dr. Pepper. We chatted briefly, and Kate seemed back to normal. She didn’t express any great enthusiasm to see me.

Cindy still had another hour and a half before she was to leave. I was encouraged by how Kate was doing and decided I would leave. I told Kate I had a few more errands to run and would be back a little later. She very adamantly said, “You are not.” At the time, she was eating a breakfast bar. I remembered that it was the last one and told her I forgotten to buy more (which was true) and needed to go back to the grocery store. She accepted that. I went back to the store. Then I dropped by Starbuck’s for a while before returning home. This was a time that I really appreciated the break and wished there had been time to go to the Y.

After Cindy left, we had about an hour before we would normally go to dinner. I suggested that Kate and I look through one of her family photo books. She liked the idea. We sat on the sofa and started to go through one of them. She was interested, but, within five minutes, she said, “Would you mind if I . . .?” She didn’t finish her sentence. I knew she was tired. She wanted to lie down for a while. I told her that would be fine. She must have been very tired because she actually went to sleep. An hour later, I asked if she was hungry, and we went to dinner.

She was tired when we got home. I put her in her chair in the bedroom and gave her the iPad. Then I turned on the evening news while I put fresh sheets on the bed. I soon noticed that she was just staring at the TV and hadn’t used her iPad at all. I asked if she would like to get ready for bed. Then we went through the routine of getting her teeth brushed and into her bedclothes. She was very cooperative. I put on some YouTube music videos that she likes, and she was asleep very shortly. That is unusual. I was especially surprised after she had gotten up so late and taken a nap just before dinner. She must have been very tired.

It was two weeks ago yesterday that we had our first experience like this. That was the day I thought she was depressed. None of the subsequent experiences made me think she was depressed. One or two times she just seemed tired. Saturday it seemed like a combination of being tired and being dehydrated and, perhaps, experiencing low blood sugar. Yesterday, it seemed to be a simple case of being tired.

I should add that almost simultaneously she has been unsteady on her feet. I say almost because she has experienced mobility problems for a while, but she has been particularly uneasy walking during the past two weeks.

I have reflected more on her symptoms. It seems like her body is in the process of shutting down. That is to be expected with Alzheimer’s and other forms of dementia. Part of the problem for me these past two weeks is my desire to continue living as we were. I plan to adapt to the current changes by accepting the fact that we may not be able to go out for lunch and, perhaps, not dinner on a regular basis. There are a variety of other ways that I can arrange to take care of meals.

The bigger issue for me is the loss of social contact. That has been very important for both of us; however, that is also something we should be able to manage. It is no surprise to me that we are facing this issue. At the time of Kate’s diagnosis, I never imagined that we would be able to live so “normally”  for so long. Of course, it hasn’t been normal at all, but we have been able to stay active. The suddenness of the recent changes has led me to respond as though this might be something that passes as quickly as it came.

I think it is good for caregivers to know what we can and cannot change. I have already accepted many things that are beyond my control with Kate’s Alzheimer’s. This may be one more change to which I will adapt. If this isn’t the time, it won’t be long until it is. I am ready to accept that.

A Day of Surprises

After the experiences of the past two days, I was hopeful that yesterday would be better. Before telling you about it, I’ll “cut to the chase” and let you know that it was better in that she was able to get up and out during the day. I don’t mean to say that Kate failed to show any of her recent symptoms. In fact, it was a day of multiple surprises.

It started early. I awoke at 4:15 to go to the bathroom. After I returned to bed, Kate was cold and needed help getting the covers over her. I got up and took care of it. She chatted a little while. I must have been awake thirty to forty-five minutes. At 6:00, she wanted to go to the bathroom. Normally, I would have gotten up after getting her to bed again, but I decided to rest a little longer. I slept until 7:15.

About 8:30, I noticed on the video cam that she was getting up. I got to her and found that she seemed groggy but otherwise quite normal. She responded to me as though he knew me as her husband, but she wanted to go home. I helped her to the bathroom. She was a bit unsteady and very insecure, actually frightened that she might fall and wanted to hold my hand. Once in the bathroom, she said, “Sometimes I wonder what’s wrong with me.” I said, “You think something’s wrong?” She laughed and said, “Well, I think everybody wonders that.” I was glad that she said this in a way that convey no sense of concern or anxiety. She was simply being candid and then making light of it.

After she was dressed, she asked if she could lie down again. I suggested we go to the family room so that she could use the recliner. She has increasing difficulty getting up from a lying or sitting position. The recliner makes that easy although it scares her. I thought she might go back to sleep for a while and did not want to experience yesterday’s problem. I went to the kitchen and got her a breakfast bar. Most of the time when she rests I play music that is especially relaxing. I was glad that I did something different. I played albums of My Fair Lady, Oklahoma, and Sound of Music. She remained awake through all of it.

About 45 minutes before I wanted to leave for lunch, I asked if she would like to look at one of her photo books. She did, and we spent only a few minutes before she said she wanted to lie down on the sofa and rest. I got her up after thirty or forty minutes without a problem. She was ready to eat.

She was very talkative in the car and at lunch. She was so talkative that I didn’t play any music going to or coming back from lunch. I didn’t always understand what she was talking about, but much of it involved her feelings about our marriage.

She rested, but did not sleep, for almost three hours in the afternoon. I played music, but she was especially taken with the house, especially the family room where we were seated and the trees outside. This was the first time I recall her expressing enthusiasm for the branches of trees without their leaves that make up most of the trees on our neighbor’s property behind our house. She asked me a number of questions that made it clear that she had no idea it was our house. I didn’t correct her.

Something unusual happened late in the afternoon. I had asked if she would like me to read to her. She wasn’t enthusiastic, but I suggested I read The Velveteen Rabbit and told her I would stop if she wasn’t interested. I read for about five minutes. She wasn’t paying attention. I asked if she wanted me to stop. She did and said she wanted to talk with me about something serious. The expression on her face also conveyed an even more serious issue was confronting her. It turns out that she was very concerned about her mother who died fourteen years ago. Kate wanted me to know that she was thinking of moving to Fort Worth to take care of her. Although everything she said was rooted in a delusion, I was astounded by the rational way she approached the topic. She talked about her various options and why they wouldn’t work. She said her mother had many friends who could help but outlined reasons that would not work. Then she talked about paid caregivers and suggested they would never deliver the kind of care she could provide. She also talked about her mother’s condition and noted that sometimes she was rather “clear-headed” (I don’t remember the exact words she used.) and other times she wasn’t. The mentioned the nature of the mother-daughter relationship that would enable her to provide better care than anyone else.

She talked continuously for a good thirty to forty-five minutes. Most of that time she did not realize she was talking to me. I got the impression she thought I was in another room and would be back soon. Several times she mentioned that she would need to talk with me about a possible move to Texas. I was eager for us to leave for dinner so that we could get back for the Super Bowl, but she kept on talking.

(My interest in watching the Super Bowl is another surprise of the day. Although I have caught a few portions of a couple of games this season, I haven’t watched a pro game all season. I am, however, aware of the success of the Chiefs’ quarterback, Mahomes, and have been impressed that a man as young as he is could attain such stature so quickly. I think, however, that the real reason I was interested was that I just wanted to relax and amuse myself for a short time.)

I was finally able to stop her by suggesting we talk about this over dinner. She accepted, and we went to Panera. It was close, and I figured we could get back in time for the game. During the short car ride to the restaurant and at the table before we got our food, she continued to talk about somebody she thought had been at the house and was going to meet us at Panera. Her attention was diverted when we got our food, and I didn’t hear anything more about the issue.

Another problem developed as we left the restaurant. Although she had been getting along pretty well, she was still a little unsteady on her feet. She wanted to take her drink with her. As we walked out to the parking lot, we had to step down from a curb. Normally, I use two hands to help her, but I had her drink in one hand. As she stepped down her weight shifted, and she lost her balance and fell. Fortunately, it was a gentle fall. The problem was getting her up. At first, I tried to lift her from the front. That failed miserably. Then I got behind her and put one arm under her right arm and the other under her left arm and lifted. Success.

The day was not over yet. Once we were home, it looked like things were moving smoothly. She wanted to get ready for bed. I wanted to watch the game. I got her to the bathroom and had her toothbrush ready for her. After that, we ran into a problem. She forgot to brush her teeth and got in bed. She hadn’t taken her medicine or put on her nightgown. That was a time when she wanted to work on her hair. I suggested that she get her teeth brushed and put on her nightgown. Taking her daily medications is becoming more difficult. She often drops them. Sometimes she puts them in her mouth but doesn’t swallow them. I have to monitor this carefully and give her one at a time. Something I did or said caused her to be angry with me. She told me to shut up, and I did something I had never done before. I very gently said, “I love you, and I know you didn’t mean to say that. We’re both frustrated, but we need to respect each other.” She followed that by speaking back to me in the same tone of voice and agreed that we do need to respect each other. She went on to say that sometimes it seems like I am trying to control everything she does. I was somewhat startled by the rational, honest and loving way she responded. Getting her ready and into bed was easy after that.

It was halftime at the game. I took my shower and left the game on. When I came back the second half was about to begin. I sat down to watch. A little later, Kate said something like, “Wow, this is really something.” I thought she must be dreaming. When I looked, I saw that she was sitting with her head elevated and looking at the TV. I asked if she was enjoying the game. She enthusiastically said yes. I know she had no idea who was playing nor could she follow what was happening. I don’t know why she seemed so engaged with the game. Could it have been an effort to connect with me in a positive way after the tiff we had earlier? Was she trying somehow to relate to me? I don’t know. Her response to the game was certainly unusual.

That wasn’t the last of the day’s surprises. After the game, I got in bed and moved close to Kate. She was still awake and seemed concerned. I said, “What’s wrong?” She said, “I don’t know. I’m scared.” I remained close to her and tried to comfort her. This had to have been one of those times she was disturbed about not knowing anything, but the only thing she said that would suggest that was asking who I was. I gave her my name and told her I wasn’t sure what was wrong but that I would always be with her and that the two of us together would be able to handle anything that comes up.

The Rest of the Story

As I finished my last post, I was seated in a chair beside our bed where Kate was resting. That was around 11:30. After that, I tried several other times to get her up without success. It was puzzling because she seemed so normal except that she wouldn’t get up. She was receptive when I said I wanted to take her to lunch, but each time she said she would like to rest a little longer.

I was finally successful just before 1:30; however, she was very unstable on her feet. I told her I thought we should go to a nearby urgent care center, but she was adamant about not going. I was able to get her to the family room where I put her in her recliner. Then I decided to call Kate’s brother’s wife who is a retired pharmacist. She has a good medical background and has been a caregiver for her two parents. That turned out to have been the best thing I could do. She mentioned that the symptoms I had observed were common among people who have been without food or liquids for an extended period of time. I immediately remembered problems my dad experienced with low blood sugar. That sounded like a plausible cause of the problem.

After the call, I opened a can of Dr. Pepper and poured it into a cup for her. I also gave her two breakfast bars and let her continue to rest. It wasn’t long before she began to perk up, but I wasn’t sure until she got up a little later when we left for dinner. She was still a bit unstable and wanted to hold onto me, but she didn’t show any signs of weakness as she had earlier.

She had a good dinner and ate everything on her plate. We came home where I put on YouTube videos and played them over two hours before she got to bed. The videos kept her attention the whole time. It was very welcome experience after the morning and early afternoon. I felt a sense of relief when we were in bed.

Caregivers As Problem Solvers

I often talk about our having “good days,” but what is becoming more common is a mixture of problem-solving and moments of pleasure. That is what it has been like the past few days.

Kate was up early on Monday and in a good mood but confused. She wanted to take a shower. Afterwards, I started to help her get dressed, but she wanted to get back in bed before we finished. We had plenty of time before the sitter was scheduled to arrive at noon. I let her rest until an hour before then; however, she didn’t want to get up. It was not a repeat of Friday when she refused. She seemed tired, not depressed. I even asked if she were depressed. She said she wasn’t, and the way she spoke and smiled suggested she was telling the truth. I was able to encourage her, and she got up.

When Cindy arrived, Kate greeted her warmly with a big smile. I mentioned that Cindy was going to take her lunch. She wanted me to go to lunch with them. When I told her I was going to the Y and to a meeting after that, she frowned. It didn’t look as though she was seriously concerned but preferred that I be with her.

She was resting on the sofa when I returned. That is typical. After Cindy left, Kate and I sat together on the sofa while I read from a photo book of her mother’s family. She really enjoyed it. We went through part of the book for about forty-five minutes and then went to dinner.

After we returned home, she started to work on her iPad. Then she decided to get ready for bed. I turned on the news, and she appeared to watch with me for most of the hour before calling it a night.

Later as I was getting ready to shower, I noticed that she was awake. I walked over to the bed. She looked worried. I asked if she was all right. She said she was, but she wasn’t very convincing. I said, “It looks like you’re worried. Are You?” She hesitated and then said, “I’m all right. You keep going.” I said, “I will always be with you.” She smiled. I said, “We’ll do this together.” I don’t know exactly what was on her mind. I know it was concern about her condition. Neither of us addressed that directly, but I feel that we were communicating our mutual understanding indirectly. This was a sad moment.

Tuesday was a good day, but we did have an unusual experience at dinner. I believe I have mentioned that Kate sometimes sees little spots on the table that she refers to as “Little Things.” She often refers to them with the pronoun “he” and sometimes comments on their moving. This was one of those times. It usually seems like a harmless form of amusement. It was a little different that night. She saw more of them and thought they were harmful in some way. She thought they were in her meal of which she ate very little. She didn’t want to have dessert thinking they might be in it as well. She just wanted to go home. She was fine after we left.

I have been sleeping very well lately, but yesterday morning I awoke at 3:30 and couldn’t go back to sleep. I got up again at 4:15 and took a twenty-minute walk in the house. I got back in bed but still couldn’t sleep. At 5:45, I decided to get up for the day. I hadn’t been in the bathroom more than a couple of minutes before I heard Kate say, “Hey.” I went over to the bed and asked if I could help her. She said, “I don’t know.” She looked frightened, and I said, “You look scared. Are you?” She said she was. I got back in bed with her. She said, “I’m glad you’re here.”

I tried to comfort her for the next ten minutes or so. She seemed to be more relaxed, and I told her I might get up and get dressed. She wanted me to stay and asked if she was supposed to do something today. She said, “Do I need to get the eggs?” I’m not sure whether she really meant eggs or she just used the wrong word as she sometimes does. I told her she wasn’t responsible for anything “today,” that she could just relax and do whatever she and I wanted to do.

I put on some relaxing music and played it very softly as we talked. I spoke to her slowly and softly and comforted her. Off and on she responded to something I said with “I remember you said that last time.” I don’t ever recall her saying that before. At one point, I told her I loved her. She said she loved me too and was glad I was with her. Then she very naturally asked, “Who are you?” Two or three times she began to shake and said, “I’m scared.” Gradually she calmed down and was almost asleep at 7:00 when I again mentioned getting up to dress and have breakfast. She said that was fine.

About 8:45, I heard her call me again. She had gotten out of bed and wanted to go to the bathroom. She asked where she was and said she wanted to “get out of here.” I told her I would help her. It was also a time when she did not remember me. She let me help in the bathroom and dressing, but she was very unsure about me.

As we walked to the kitchen for her morning meds, she said, “I just want to lie down.” I took her over to her recliner. She sat down, and I put it in its fully reclined position. She forgot all about leaving and rested another forty-five minutes before she opened her eyes and looked over at me. She smiled. I’m not sure if she remembered my name or our relationship, but she was quite at ease with me. Then closed her eyes and continued resting.

I got her up in time for us to have lunch together before the sitter arrived. After lunch, she rested on the sofa. Mary arrived shortly after that, and I left. Kate was very comfortable about that. The two of them were chatting as I walked out the door.

I was surprised to see Kate sitting on the sofa looking at one of her photo books when I returned. Typically, she would be resting. She said she was glad to see me though she didn’t look at all disturbed that I had been gone. I walked Mary to the door, and she told me that Kate had asked where I was a number of times but didn’t seem unduly concerned.

I sat down to go through the photo book with her. She wanted me to identify the various people in the photos, but she quickly found that overwhelming. I suggested we take a break and go to dinner. She wanted to go to the bathroom, and I took her.

When she was finished, she was very disturbed about people we would see somewhere, apparently in her hometown in Texas. I told her it would be a long time before we made a trip to Texas. That didn’t help. She said she couldn’t help thinking about how her mother was feeling. On the way to the restaurant, she continued to worry about these people and how she should react to them. I assured her I would be with her and would try to see that everything went smoothly. She appreciated that, but it didn’t relieve her pain.

Once we were seated at our table, she continued to talk about these people. I never figured out what it was that she was afraid would happen, only that she was very disturbed. At one point, she started crying at the table. She recovered quickly, but it wasn’t until the food arrived that her attention was diverted, and she never mentioned anything else about it.

Before we left, we had an experience that was similar to the one we had the night before. When our server brought the check, Kate pointed to the table top and asked if the server could see “them.” She didn’t. Kate pressed her finger on the table and held it up to the server and said, “See?” The server played the game well. She pretended to pick “it” up from her finger and said, “Now, I’ve got it.”

The day ended well. We watched a couple of YouTube videos about the story and filming of The Sound of Music. I know she couldn’t follow it, but she was quite interested. As usual, she was awake when I got in bed. That is the most predictable moment of the entire day. She almost always seems at ease and glad that I have joined her. We usually talk briefly, express our love for each other, and say good night. I was glad to end the day on a positive note. We are certainly having more days that call for greater problem solving.