A Good Day But a Lot of Confusion

It’s hard to summarize in a heading what yesterday was like. Bare with me as I try to explain.

The day began differently than others over the past few weeks. She has been getting up rather easily when I woke her sometime between 10:30 and 11:00. There have been three or four days when I didn’t have to wake her at all. She waked up on her own at earlier times. In fact, it was earlier enough that we made it to Panera three or four times over the past week or ten days.

Yesterday was different. I was about to get up at 5:50 when she wanted to go to the bathroom. She didn’t display any of the confusion she has on some occasions, but she sounded relieved when she said, “I am glad you are here.” She repeated that a couple of times on the way back to bed. I quickly decided it was best if I got back in bed with her. It was the right thing to do. She was feeling insecure over not knowing who she was, who I was, or where she was. I stayed with her until 6:50. Then I got up to prepare for the day. She was still awake when I left the bedroom. I told her I would be in the kitchen. She was completely comfortable with that.

Before I ate breakfast, she started to get out of bed. I went to the bedroom and found that she wanted to get dressed. It was still early, and I asked if she would like to take a shower. She did. When she was finished, she went back to bed. The fact that she had gotten up and taken a shower so early led me to believe I would have no trouble getting her up for lunch. I was wrong.

We have not been to church in almost a year and had planned to take Kevin with us. To insure that we would be on time for the 11:15 service, I went in to wake her at 10:00. She didn’t want to get up. I decided not to push her. I went back around 10:20. She was firm in her intention to remain in bed. Kevin and I changed our plans for church. I made a noon reservation at Bonefish Grill. Finally, I went back to wake her at 11:00. She still didn’t want to get up, but she gave in with a little encouragement. She wasn’t happy about it, but her mood quickly changed when she saw Kevin as well as the flowers and pictures in the family room.

She surprised me at lunch when she expressed displeasure that I didn’t order a salad for her. I never order a salad for her because she doesn’t enjoy salads. She has never complained before. I offered to get her one or to share mine, but she didn’t want anything but two of my olives.

I wasn’t surprised that she wanted to rest when we got home, but, as usual, she got up rather easily when it was time for us to leave for a live performance of Hello Dolly at one of our local theaters. She did surprise me, however, during the intermission when she struck up a conversation with a man in the lobby. He was standing by the three of us and told us he had first been to this theater when he was a child. Kate asked him what he did. He told her he was a retired radiologist. Kate said, “What’s that?” He began to explain by giving her a tidbit of history including the early experiments of William Roentgen. Kate expressed interest and complimented him about the contributions that he (the man she was talking with, not Roentgen) had made. He tried to play down his own work, but she insisted she accept her compliment. I found it a most interesting conversation. Except for not knowing anything about radiology and x-rays, she seemed quite normal. She was a very active participant in a conversation with a total stranger.

After leaving the theater, we stopped by a pizza place that had been a favorite of our children’s when Kevin would have been as young as two or three. We finished the meal by sharing a piece of cheesecake. Kevin and I didn’t waste any time sampling it. Kate apparently didn’t notice it was sitting in front of us. I put some cheesecake on her fork and placed it on her plate. She still didn’t eat it or acknowledge that it was there. I pointed it out, but she couldn’t understand what I was trying to tell her. She put her plate aside and pulled the plate with the cheesecake toward her. I explained that I had already cut a piece for her. Again, I showed her the fork with the cheesecake on it. She was still confused. After several tries, she finally understood.

When we got home, she asked what she could do. I handed her the iPad and suggested she work on it. She said, “What’s this?” That was not an unusual response. She almost always takes interest in her iPad, but she often doesn’t know what it is. When I mention that she can work puzzles on it, she understands. That is what happened last night. On occasion, she is confused as to what she should do after the puzzle pieces are scattered. Last night was one of those times. I explained, and she went to work. She had a very difficult time. I don’t recall her every having more trouble before. In my effort to help, I may have exacerbated the situation. I was trying to be patient, but I realized the tone of my voice was stronger than usual as I pointed to specific pieces and then to places where they should go. That probably frustrated her even more. I decided it was best if she dropped the puzzles for the night.

Then she picked up a word puzzle book on the table beside her. I noticed that she was holding it upside down. She seemed confused. I turned it right side up. Then she put it aside and picked up the coloring book I had bought her months ago. She has never shown any interest, but I have kept it on the table beside her chair in the family room since then. Once in a while, she picks it up and looks at it. I picked out a crayon and gave it to her. She wasn’t sure what to do with it. I gave her what was an insufficient explanation. Then I decided it was better to demonstrate. I colored a small teardrop object on the page and gave her the crayon. From there she took over and colored for the next twenty minutes or so before it was time to get ready for bed. I was pleased that she was interested and hopeful that she may try it again. That could be a good replacement for the iPad as she loses her ability to work her puzzles. I was also discouraged when I watched her color. She didn’t appear to know what to do. What she colored looked like something that a young child might have done. The most important thing, however, was that she found something she liked.

There are two things I can say about yesterday. First, it was not a good day in terms of Kate’s Alzheimer’s. I don’t remember a day when she has been as confused for as long a period of time. Second, all-in-all it was an enjoyable day. She especially enjoyed the musical. The day was another good example of how mixed our days can be and that the Happy Moments still outweigh the sad ones.

Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

Music and Rest

Even though I believe so strongly in the power of music, I am still occasionally surprised by experiences with Kate. Day before yesterday, she did two things that I didn’t expect. The first occurred as we were about get into our car after lunch. I told Kate I loved her. I have no idea why, but I immediately thought of that old song “I Love You a Bushel and a Peck.” I can’t remember the last time I heard it. It certainly isn’t a song one hears very often.

When I got in the car, I googled it and pulled up a rendition by Doris Day. After she had sung the line “I love you a bushel and a peck,” Kate sang the following line in sync with the music – “A bushel and a peck and a hug around the neck.” Of all the names of people, places, and things that have been lost in her memory, how did this one pop into her mind, and so quickly? I thought for a moment. Then I asked myself if this was any more puzzling than my remembering the song itself when I said, “I love you.” I’ve said that thousands of times without making that connection. Why did I make it this time? We have so much to learn about the brain.

The other incident occurred the same day. We were in the car, and “If Ever I Would Leave You” was playing. It wasn’t long before she said, “I would never leave you.” I took note of her remark because of her emotional experience with another song that was sung at Casa Bella last week. I had wondered to what extent she was able to make a connection between the words of a song and our own relationship. My guess was that she was moved by the music and lyrics but probably didn’t make a connection to us. I still think that. On the other hand, this week’s experience let’s me know that she is able to process more of what is said than I usually believe or report in this blog.

I have, however, noted that she often gives evidence of rather keen insights concerning what is going on around her and between the two of us. I take these experiences as examples of her intuitive abilities, and they continue to work amazingly well. One of those occurred last night as we left Casa Bella. She thanked me for trying to keep her from “making an idiot of myself.” While I always assure her that she gets along fine, she recognizes the many problems she has. Without a memory, she can’t remember all the things each of us does when we are eating out and feels insecure. Sometimes, as she did last night, she worries about how to order her meal. She kept picking up the menu and asking for my help. Each time I told her what I selected and would order for both of us. She was relieved, but she couldn’t remember. She asked for help another 6-7 times before the server took our order. There were a number of other things for which she needed help. It’s hard to imagine the pressure she must feel in situations like this.

Perhaps it is this kind of pressure she experiences throughout the day that is now causing her to rest more. She is making a habit out of resting immediately after we get home from lunch. That happens even on the days she has slept as late as 11:00. The length of time she rests is also increasing. After lunch, she sometimes rests until time for us to leave for dinner. In addition, two nights this week she has gone to bed shortly after 7:30.

The good news is that she continues to be happy even in situations like last night. I believe it is good for her to get out despite the challenges. I am hopeful about continuing a while longer.

An Early and Cheerful Start to an Emotional Day

Kate got up on her own about 9:30 yesterday morning. She didn’t seem groggy at all and was quite cheerful. I took advantage of the occasion and got her to shower. That’s not something she usually wants to do, but she always likes it once she is under the water. As I helped her dry off, I joked that this must be like having her own personal spa service at home. She laughed and said, “That’s something I like about you. You have a sense of humor.”

Her good humor did not indicate a lack of confusion. As she was putting on her shoes, she pointed to the carpet and said something about her mother. I didn’t know what she was talking about, but it sounded like she saw her mother on the floor.  It turned out there was a white spec on the dark blue carpet that bothered her. I think this was one of those instances in which she just couldn’t think of the correct word. How she made a connection to her mother is a mystery.

Because she was up earlier than usual, we had a little time before we needed to leave for lunch. I decided to make use of the time by showing her pictures of her family. We began in the hallway outside our bedroom where we stopped to look at those of her grandmother and mother. I tell her the same stories each time. She is always surprised and interested. She almost always guesses that the picture of her mother is her own photo. That is not something limited to this particular picture but others that we see in her various family photo books.

As I talked about her mother, she became very emotional. She was, as usual, struck by her mother’s smile and her eyes. Despite her interest, I gave her more information than she could take in and said she thought we should move on. Then she did something I have not seen her do before. She said goodbye, touched her fingers to her lips, and placed them on her mother’s face. Her feelings for her mother are even more intense now than ever. I got the sense that she thought we were in her family’s home in Fort Worth. I guess she was thinking that we were leaving to return to Knoxville. She wanted to take the picture with us. I was about to tell her she could when she said, “Maybe this is a better place for it.” I agreed.

We still had another thirty minutes before we needed to leave, so I brought her to the family room where we looked at a photo of our daughter’s twins when they were six or seven. I suggested we sit on the sofa where I could show her the photo book of her mother’s family. She was immediately taken by it and was very emotional as I told her the names and read her the text that accompanied the photos. We didn’t get further than a few pages because she was getting too much information, and it was close to time for us to leave. She said something she has said a number of times before. As I was reading the text, she asked me to write this down so that she could have it for the album that she wants to make. It always seems strange to me that she wants me to write it down when it is already so nicely summarized in her books. Of course, I am looking at this as someone who does not have dementia.

Before leaving for lunch, she thanked me for bringing her here and commented on the many experiences we had had in this place. I am making this sound more straightforward than it really was. She couldn’t find the words she wanted. I guessed what she was trying to say, and she agreed with my interpretation.

Her emotions were obvious in several other ways at the house and the restaurant. I gave her a little mouthwash but didn’t tell her not to swallow it. I think this was a first for me, and, usually, she is insulted when I tell her. This time she swallowed it. Fortunately, it was not Listerine. She doesn’t like that and would have reacted strongly. This was a Colgate product that does not contain alcohol, so it didn’t bother her at all. When she swallowed it, I reflexively told her she shouldn’t do that. She responded emotionally with tears. This time because she had done something wrong. As with other things, she is also mindful of and very sensitive about doing the right thing. I think that is what is behind all of her questions when we are eating out. She doesn’t like to make mistakes but knows she makes a lot of them.

When we arrived at the restaurant, our server rushed over to give her a big hug. Kate was overcome with emotion and was teary all the way to the table. As we talked during our meal and in the car on the way home, she had teary moments as we talked about our marriage and children. In keeping with her growing insecurity, she expresses her expressions of appreciation for helping her. There is no question but what she recognizes she needs help and that I am the primary person who provides it.

She surprised me after lunch. She didn’t say anything about wanting to rest. She sat down with her iPad and started working jigsaw puzzles. She did need occasional help, but she worked three and a half hours without a break. She still showed no sign of wanting to rest. It was a high energy day which is very unusual. The battery on her iPad was exhausted before time for bed.

She was very talkative during and after dinner although I could not understand everything she said. In fact, I understood very little. When we adjourned to our bedroom for the day, she worked on her iPad, but her mind was on something else. The night before and last night at dinner it was clear that she thought we were having company at the house. It sounded like a big event. She had asked me if I had taken any pictures of the people the night before. I told her I would get them later. Last night she wanted to know if I had the camera ready. After a while, she asked if I had taken a picture of her. I told her I hadn’t but would be glad to do that “right now.” I picked up my phone and took it.

The one thing I could understand was her strong sense of insecurity as expressed in her exaggerated words of appreciation for me. I don’t ever recall a day in which she so frequently thanked me and expressed her feelings for me. At no time during the day did she act in the least way irritated with me.

All of her behaviors are indicative of how much she has changed over the past few weeks or months. Despite recognizing this change, I felt good about the day. She was unusually happy, and I was able to deal with her moments of insecurity. I find that I tend to be sad as I look to the future. “In the moment” I almost always feel good. The hardest thing for me to deal with is her moments of anxiety. Fortunately, they don’t occur often and are short-lived.

Signs of Aphasia

When Kate had her psychological evaluation following her diagnosis, the psychologist told us that she was likely to retain her greatest strengths the longest. I would say that is her gift for conversation in everyday social encounters. I attribute her success in social situations since her diagnosis to that particular skill. It has meant she could get along well without saying anything that would make it obvious that she has Alzheimer’s. That is changing significantly now.

There are two aspects of her aphasia that coincide with fundamental symptoms of dementia. The first is difficulty organizing her thoughts to explain something she wants to tell you. This has been a problem for a long time. I quickly learned not to ask her to explain anything. She would simply say, “Let’s not talk about it now.” The second involves her memory for words. That is happening now.

I am sure this began earlier than I recognized and relates to the difference between all the words in one’s vocabulary and the words that are most frequently used. Now she doesn’t recognize some of the most common words that we all use. I mentioned in an earlier post that I have had to tell her what pizza is on several occasions. I’ve tried to describe a pizza, but the best way to tell her is to pull up a picture on my phone. Ironically, one of the first words to drop out of her vocabulary was iPad. She almost always calls it “my thingy.” That is also used for a number of other words that she can’t recall.

Sometime during the past week, I told her she was up early enough for me to get her a blueberry muffin. She had no idea what I was talking about. This week she looked at the salt and pepper shakers on the table at a restaurant and asked what they were. I explained, but she didn’t appear to understand. On another occasion, I used the word “restaurant.” She didn’t know what I was talking about.

Another type of speech problem is properly pronouncing words. This comes up most often when she asks me the name of something or somebody. I think this occurs because she doesn’t hear the name correctly, but I am not at all sure. It also occurs in other situations. For example, she often pronounces “shoes” as “shows.” The other night she said, “I still want to walk a little bit on my thingy.” (Translation: “I still want to work a little bit on my iPad.”) Similarly, she recently said something about my “bed.” She meant my “head.”

Even though I know this is a common characteristic of this stage of her Alzheimer’s, I find myself concerned about it. Perhaps, I am sensitized because of our experience with Kate’s friend, Ellen, in memory care. We continue to visit her every 4-5 weeks, but her aphasia has made our visits more challenging. I can’t help wondering how long it will be before Kate is in the same position. That would be a major change in our lives.

Markers on Our Journey

One of my AlzAuthors colleagues and a Twitter friend, Barbara Ivey, has written a unique “book” called Patterns in Time. It is by far the “tidiest” summary of a family’s experience with Alzheimer’s I have read – 8 pages including the front and back covers. Despite its brevity, it includes relevant information about the disease, key resources for help, and a remarkably complete summary of her mother’s Alzheimer’s along with the roles that she and her father played.

I have been particularly taken with her timeline that shows key events that occurred along the way. It reminds me of the admonition of sales trainers that a good sales person needs a strong “30-second sales pitch.” Ivey’s message is brief and to the point, but it tells her story. One reason I find her approach fascinating is that it is the exact opposite of what I have tried to do in this blog. I have saved my journal in several different files and haven’t checked the number of pages since launching it as a blog in January 2018. I seem to remember it was over 1500 pages at that time. It must be over 2000 by now. For the most part, I believe it is accomplishing my objective. It is a detailed account of our experience Living with Alzheimer’s. The problem is that it is too long for anyone other than close friends or family to read in its entirety.

For some time, I have thought about using it as a resource for a book that would tell our story in a more “digestible” format than an almost daily journal. It might have been helpful for me to have kept a timeline similar to the one in Ivey’s book. I didn’t do that, but I have noted a number of markers along the way. During the first few years, there were very few. Now they appear much more frequently. Creating a timeline from those that have occurred and all the new ones could be the basis for editing my blog and turning it into a book.

Some of the key markers of the past include Kate’s diagnosis, our planning for the rest of our lives (travel, eating out, music, visiting family and friends, etc.) Kate’s giving up her computer, our last international trip, giving up her yardwork, our last trip to her home in Fort Worth, our last trip to Chautauqua, our last visits to our children’s homes, the forgetting of the names of her family, our last movie, no longer attending evening music and theater performances, and the near elimination of trips to Panera and Barnes &. Noble. Of course, there were many others as well.

We have recently experienced two new markers. Both of them involve Kate’s increasing problems of mobility. I used a handicap placard for the first time when we met friends for dinner last week. I had just gotten it the week before. We find convenient parking most places we go, so I had not felt a need for a placard before now. In this particular case, we were going to a restaurant in a downtown office building. It can be difficult to find on street parking, and the parking garage requires a long walk. In the future, I am sure I will find other occasions when having the placard will be useful.

Kate has been having more problems getting up from chairs at home as well as the sofa. After lunch yesterday, we drove across town to the La-Z-Boy showroom to look at lift chairs. The only thing I told Kate was that I wanted to look at a chair that might be easier for her to get out of. She wasn’t excited.

When we walked into the showroom, we were greeted by a sales woman who took us to the appropriate section. She had quickly noted Kate’s size and showed us one that she thought might be the best fit. Kate took a seat and loved it. This was before demonstrating how it works. Once we had done that, she liked it even better. I went ahead and bought it although it will be 4-6 weeks before delivery. It will also have the advantage of reclining so that she can rest in the chair rather than the sofa. I think she’s going to like it.

These are just two among many other things that are happening now. I will talk about some of them in other posts.

A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

Does she know what lies ahead?

I don’t think I am alone among caregivers when I wonder exactly what Kate knows. By now I realize that she knows very little when it comes to her rational thought/abilities. Many times I have mentioned how often she can’t remember my name or our relationship. I take comfort in the fact that her intuitive thought/abilities are still working well. Through them she almost always recognizes me as someone very familiar and trusting.

For over a year, I have also realized that she no longer remembers that she has Alzheimer’s. At first, I wondered if I should tell her and, on one occasion, I did remind her. She hadn’t remembered, but she quickly forgot, and I haven’t said anything since. I haven’t see anything to be gained by it.

She has always recognized that she has problems and needs my help. It was only a year ago in July that she began to experience anxiety or panic over moments when she didn’t seem to know anything – where she was, who she is, who she was with. Within the past few weeks, I have sensed that she might believe that her problems were of a more serious nature, not just a periodic lapse of memory. Over the past week or two, she has said and done things that lead me to think that she knows she is declining and is afraid of what lies ahead.

Sometime in the past day and again today at lunch I felt strongly that she recognizes that through her intuitive thought. She was awake when I went to get her up for lunch. She didn’t seem frightened, but she was uneasy and insecure. She was especially eager for me to help her with everything. That follows signs of increasing insecurity and appreciation for my helping her during recent weeks.

At lunch, I said something about her mother and father. She wanted to know their names and something about them. When I said that her father was one of eight children, she said, “I know why.” I said, “Why?” She said, “Because in those days, they needed more children.” I was surprised that she came up with this and said, “You know, you are smart.” She beamed and said, “I think so too.” It was as though she was relieved to have me say that. Off and on she has said she is smart, but that has been more frequent recently. I have felt she was trying to convince herself that is true. It would be easy to think she is not given how poor her memory is and how little she is able to do.

During our conversation, she stopped and said, “I want to tell you something.” She looked very serious. I leaned closer to her. She said, “I know that you will always take care of me.” I said, “I will. You can count on that.” Her eyes filled with tears, and she said, “Thank you. I know you will.” I felt we were thinking similar thoughts about the future. There is no way I can be sure, but the look on her face made me think that.

I told her I loved her, and she said the same about me. We began to talk about our marriage, and I mentioned our children. She said, “Who are they?” I told her and she asked if I had a picture. I pulled out my phone and showed her pictures of Jesse and Kevin. She said, “Do you think they love us?” I said, “I know they do?” She choked back her tears.

In a few minutes, we got up to leave. She started whimpering and was loud enough that I saw people at two different tables look up. On the way to the exit she continued to cry softly. We stopped right there in the dining room and hugged for a moment and then went on.

I don’t know precisely what she is thinking, but she seems very concerned and doesn’t see a happy ending. I am glad she still knows that I will be with her all the way.

Kate’s Final (?) Appointment with her Ophthalmologist

We may be reaching a point at which we no longer schedule routine medical appointments for Kate except for her primary care physician. It is becoming a matter of assessing the risks vs. the benefits.

Yesterday she had a routine appointment with her ophthalmologist. This is one in which I had a special interest. I have commented many times on her eyesight problems. Kate is unable to recognize that she has a problem, but she seems to see some things and not others. For example, she may not see a large object on a counter but notice a small spec of dirt on our carpet or small particles of food on a restaurant table. Until recently, I had attributed her vision issues to her Alzheimer’s rather than a physical problem with her eyes. Two particular issues, however, have made me wonder if it could be something like macular degeneration. In a phone conversation with her ophthalmologist I confirmed that at the time of her last check up in February, there were no signs of a physical problem and that it was unlikely that it would have developed since then. Nonetheless, I wanted to know for sure. Yesterday’s visit provided the answer. It was just what I thought. Her eyes are fine. Her vision problem must be related to her Alzheimer’s.

There is more to report, however. Appointments themselves are becoming a problem. Kate has little patience, and waiting is a normal process in most health-related professions. The notable exception is her primary care physician who is associated with a gerontological practice. The wait time in the lobby is not usually more than 5-10 minutes. The appointments are not scheduled as closely together. Her doctor, and the others we have seen, always take a lot of time with their patients, many of whom have dementia. They know how to relate to patients like Kate.

I don’t mean to suggest Kate’s eye doctor and/or staff are insensitive to the needs of patients with Alzheimer’s. They aren’t, but the system is set up for non-dementia patients. That means waiting times exceed Kate’s patience. Her appointment was at 1:15. She didn’t see her doctor until 2:15. To be fair, she was only in the waiting room about fifteen minutes. She spent another 15-20 minutes with the doctor’s assistant who was getting information, checking her vision, and giving her the necessary drops before the doctor arrived. That left about thirty minutes before she saw the doctor. Kate has trouble understanding the instructions anyone gives her, so that complicates every portion of the examination. Neither does she understand why she needs the exam in the first place. Yesterday’s exam was particularly difficult for both Kate and the assistant.

The good part is that she took it somewhat good-naturedly. She joked a lot, and both the assistant and the doctor got a kick out of her comments. Sometimes she was quite serious. When the assistant checked her eye pressure, Kate was startled, pulled herself away, and told the assistant to stop. Then she did something that surprised me. She looked at the assistant and spoke to her  as though she were a teacher. She said, “Talk slowly. Go one step at a time, and give me clear instructions.” That is exactly what she needs. Of course, not even that will insure that she understands. At the end of the visit, the doctor looked at Kate and said, “Well, I have good news for you. You don’t need to come back for a year.”

When we checked out, it was a challenge finding an afternoon appointment at our preferred location. We finally found one at 11:55 on August 28 of next year. I can’t imagine that Kate will be up to another visit when the time comes around. I feel sure her doctor felt the same way, but, like so many other things, we will see.

Sleep and Rest

Until a year ago this past April, Kate’s sleeping pattern had been pretty steady. I’m not at all sure that she sleeps any less today than she did, but the time she gets up often varies. More than half the time I get her up between 10:30 and 11:30 depending on whether we have any special obligations. Sometimes, as she has done in the past couple of weeks, she gets up as early as 8:30 or 9:00. It is not uncommon for her to be awake when I go to wake her. She usually goes to bed between 8:30 and 9:30. I don’t think she is usually asleep until 10:00 or later. She must get about 12-13 hours sleep a night. Eighteen months when she was on Trazadone, she slept about 13-15 hours.

The major difference now is the amount of time she rests without going to sleep. Yesterday, for example, I got her up around 11:00. It took an hour and a half for her to shower and dress before leaving for lunch. We got to lunch just before 1:00 and arrived home at 2:30. I suggested that she and I look through one of her family photo albums, but she wanted to rest which is typical when we get back from lunch. She immediately went to rest on the sofa in the family room. She rested until 5:30 when I suggested we go to dinner. There was a short period, no more than 15-20 minutes, when she appeared to be asleep. Otherwise, she was just relaxing.

I am guessing that the strain of social interaction, looking through photo albums, and working on her iPad wear on her in a way that is hard for me to understand. She doesn’t usually show any special signs of fatigue until after we head home from the restaurant. During lunch, she sometimes tells me she wants to rest as soon as she gets home.

As I have mentioned before, the amount of battery life left on her iPad is a good indicator of the amount of time she uses it. Though it remains her primary self-initiated activity, she clearly doesn’t use it as much as she did. That is a result of her resting more because she hasn’t replaced the iPad with another diversion.

The most significant change brought about by her current pattern of sleep and rest is our getting out to Panera in the morning and to Barnes & Noble in the afternoon. That had played a major role in our social engagement. That makes our lunches and dinners our primary means of social contact. That continues to work well for us.

The mornings are times for me to take care of all the routine household chores and other personal obligations I have. I now wash as often as four times a week. A year ago, washing was just once a week on Saturday morning. I also find that the afternoons are pleasant times for us. When she is resting in the family room, I always take my laptop or iPad and stay in the room with her, and, of course, music is always playing. Since Kate is not asleep, we also engage in intermittent conversation. It makes for a very relaxing afternoon for both of us.

Life is different now, but we still get along “remarkably well.” I certainly expect more challenges like the ones we have faced recently, but I am also optimistic that we will handle them well and be grateful for Happy Moments past, present, and future.