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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.

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Update on In-Home Care

It has been two years since I began in-home care for Kate. I spent about eight or nine months considering the move. Then I agonized over how to tell her. Because of her memory problem, I decided there was no reason to bring up the subject too far ahead of time. I told her a few minutes before the sitter arrived for her first visit. She asked why I was having someone stay with her. I told her I was feeling uneasy about leaving her alone and that I would feel better if someone were with her. She said, “Okay.” That was it. I was surprised at how well it went.

We started with sitters three afternoons a week (Monday, Wednesday, and Friday) four hours each visit. We continue that same schedule two years later. Fortunately, we have kept the same sitter on Wednesday and Friday. We have had three different sitters on Monday. Each one has worked pretty well although I have a preference for the one who comes twice a week and have felt that way from the beginning.

Kate and I have both adjusted well to the sitters themselves as well as the schedule, but we have responded differently. At first, Kate seemed to do pretty well. She may have even enjoyed having the companionship. As she became increasingly dependent on me, she also became more insecure about my leaving her. She would act surprised (I’m sure she really was) when I told her I was leaving and would say something like “You’re leaving? Why don’t you stay with us.” That left me to explain why I needed to go. She always gave in, but she also looked disappointed. More recently, even though she is more dependent on me now, she has been very accepting of the sitter. She often expresses enthusiasm when they walk in. In the past 2-3 weeks, she has shown no sign of disappointment that I am leaving. Of course, that makes me happy. I just hope it continues.

I have adapted differently than Kate. From the outset, I hated to leave her. Over time, however, I have been more comfortable. That is especially true recently as Kate has responded more positively, but I still feel a little uneasy when I leave her. My own experience has made me think about my dad who never wanted to have someone stay with my mom. My brother and I tried to get him to accept help and succeeded in getting him to try it. He let her go after one or two visits.

Despite my feelings, I have continued because I felt it was the right thing to do. I believe it is important for me to keep up with some of my outside activities. My plan for Kate’s care has always included bringing in help as needed. I am actually surprised that I have not felt the need to increase the number of days we have a sitter. In many cases, caregivers don’t have paid help because of the expense. In our case, we have long-term care insurance that will pay up to eight hours a day seven days a week. The only reason I don’t take advantage of that is my desire to spend as much time with Kate as I can. I know that we are approaching a time when I may not be able to take her out with me as we have done before. I have a stronger desire to enjoy all the quality time we have left than to use the insurance just because we have it.

I think I am in a good position. My intent is to continue monitoring our needs and increase her in-home care as needed.

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Early Morning Conversations

Day before yesterday, Kate was awake around 3:30. The same thing happened this morning shortly after 4:00. Both days we had the kind of conversation that I have reported on before. She went through the usual questions. “Where am I?” “What’s my name?” “Who are you?” She did not seem anxious at all. In fact, this morning our conversation began when I heard her laugh. I asked what was funny. She said, “The two of us are just lying here.” I’m not certain why that was funny. She didn’t say, and I didn’t ask. I find that asking “why” questions is always unproductive. She can never come up with an explanation though she sometimes says, “I don’t know.”

Both conversations were very repetitive. By that, I mean that she asked the same questions very closely together over and over though not in rapid-fire succession. They were very relaxed the way you expect for a conversation in the middle of the night. Here’s an example.

Kate:              “Where am I?”

Richard:        “You’re right here in our home. This is where we live.”

Kate:              “Oh, good. <pause> Where am I?”

Richard:        “This is our home. We live here. We’ve lived here for twenty-two years.”

Kate:              “Oh. <pause> Where am I?”

During the conversation, I also mentioned that we live in Knoxville and that we have lived here forty-eight years. Several times she also asked her name as well as mine, but her focus seemed to be on her immediate surroundings.

We talked about forty-five minutes night before last, not as long last night. Each conversation ended when she gradually stopped talking and went back to sleep.

The repetitiveness of her questions is an indication of just how short her short-term memory is at this stage. I have also noticed it in other situations. Sometimes her memory works as though it is controlled by a switch that turns off right after you tell her something. Other times it is like the switch is turned on and off again quickly. For example, yesterday we looked at a few family photos on our entertainment center. She pointed to one of her mother and said, “That’s my mother.” She looked at the next photo of her grandfather and asked who he was. I told her. Then she looked back at the picture of her mother and asked, “Who is she?” We had just seen the picture of her and her brother on the cover of her “Big Sister.” She recognized herself immediately. A few minutes later. we looked at the same picture on the entertainment center, and she didn’t recognize herself. Similarly, she will know my name one minute and not the next. It’s just another mystery of the way the brain works – or doesn’t.

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An Update on Eating Out

As I have expressed in other posts, a variety of things have played a role in how well Kate and I have gotten along through six of the seven stages of Alzheimer’s. I believe that nothing has been more important than our eating out for lunch and dinner. That has kept us socially active without having to depend on our friends. Of course, some of our eating occasions are with friends, but we almost always dine alone. There are notable exceptions like our three music nights a month at Casa Bella when we sit with two to six others. In addition, we met a couple at these music nights with whom we eat on other occasions at least once a month.

Now that she is in the last stage of Alzheimer’s I see more signs that her symptoms could ultimately be a bit of a problem with other people. For quite a long time, she has been a “messy” eater. She is even messier now. She regularly drops food on the table, the floor around her, and, of course, her clothes. When her meal includes items that she doesn’t like, she often takes them out of her mouth and puts them on the table. If we are sitting close enough, I reach over and put them on my plate, in a paper napkin, or another appropriate place.

I have gotten rather accustomed to her frequent use of her hands rather than a fork which is especially common when she eats a sandwich. She almost always takes it apart and picks up the various pieces (cheese, tomato, or meat) with her hand. Depending on the amount of sauce or other condiments, that can be messy.

At lunch on Saturday, she did something she hasn’t done before. Our server brought us a piece of cheesecake. After she placed it on the table, I asked her a question. She started to answer when I noticed that she was looking at Kate. I looked at her and saw that she had picked up the whole piece, taken a bite out of it, and placed it back on the plate. This was not a problem for either the server or me although the server was surprised. She is aware of Kate’s diagnosis and is very understanding; however, it is only recently that she has had the opportunity to witness some of her symptoms. Things like this do make me think about what might lie ahead.

There are also times when I say or do something that bothers Kate, and she snaps back at me. The other day at a restaurant she placed her sweater over the back of her chair. It apparently didn’t feel right when she leaned against it. I asked if she would like me to put it on the back of an empty chair beside us. She looked like she didn’t quite understand me, and I reached over and took the sweater from her chair. I don’t remember what she said, but she quickly gave me a sharp response as the server approached our table. I apologized to Kate and put the sweater back. It turned out that she was then embarrassed to have spoken to me like that. She had tears in her eyes and said to the server, “I’m sorry. I shouldn’t have said that. I want you to know that I am not usually like that.” That is very true, and I suspect the server recognized that as well. She has served us many times in the past few years and never observed anything like that before.

I believe that all our servers and the people with whom we eat are also understanding, but I wonder if there is a limit to which I should go in putting Kate in situations where some might not feel the same way. For the moment, I am optimistic that we will be able to continue eating with others for quite a while; however, I am going to be watching very carefully to sense what is best in the future.

Last night at Casa Bella we encountered an entirely different kind of situation that was a lesson learned for me. Two months ago, we learned they were sponsoring a special Italian dinner that occurred last night. It sounded like the kind of event we would enjoy, but I was concerned about two things. First, all seating was to be outside in the street in front of the restaurant. Kate is very sensitive to heat, and September can still bring hot weather. Second, I wasn’t sure about the seating. Big crowds are confusing for Kate, and I didn’t want to be seated with a group of strangers that might add to her confusion. On the other hand, I wanted to support the owners whom we have come to know the past few years. I talked with them and learned that we would be seated with the same people with whom we normally sit. I decided to take a chance and attend.

As it turned out, I wish I hadn’t. It was 90 degrees when we arrived and didn’t drop a lot during the meal though it felt better after the sun went down. The gnats were there in abundance as well. The benefit of being seated with our regular couples was offset by the noise level. The tables were under a large tent to protect from the weather, but I think that contributed to the noise. It was very difficult to converse. Everyone was asking everyone else to repeat what the other person said. Kate remained quiet except to make noises associated with gnats that periodically flew in her eyes.

Given all of this, Kate took it quite well, but I could see I had made a mistake in deciding to come. I was glad we hadn’t shown up for the cocktail hour that preceded the dinner. We were the first ones to leave shortly after finishing our meal. I have been very careful to avoid situations like this in the past. I should have done that this time.

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An Update on our Morning Conversation

About 8:45, I heard Kate say, “Hey” and noticed that she was about to get out of bed. As I walked to her bedside, she had the happiest smile that I have seen in quite a while. She moved over so that I could sit on the edge of the bed, and we engaged in another conversation that lasted almost thirty minutes before she wanted to get up. She was unusually alert and very cheerful. She must have been lying awake for quite some time before calling me.

I told her it was a beautiful morning and mentioned the pink flowers of the Mexican Heather in a flower bed near the pool. She seemed to like hearing about them but was too comfortable lying in bed to get up to look. Then she started a conversation about everything that “they” (I’m not sure who) had done with “all this.” I thought she was talking about the people who built our house, but she started talking about our ancestors (my word, not hers) and the difference in our world today because of the sacrifices they made. She picked up on a theme that has been rather frequent in the last year or two, the equality of women. Her emphasis was less on the role that men have played in keeping women “in their place” than simply recognizing the contributions of women in history and the present. Some of that involved farming and the lives of both men and women when most families were farmers. We talked about education and the fact that women outnumber men in college and are a majority in a number of professions previously dominated by men. We both agreed that we are happy to be living in this particular time period, a view that seems to be typical of many people in every generation.

After a while, I asked if she wanted to get up or stay in bed a little longer. She was ready to get up. We went to Panera arriving about 9:30. She had a muffin and worked on her puzzles. I checked email and started on this post. A few minutes ago, she looked up at me. She looked surprised to see me and said, “Who are you?” I said, “I am Richard. I am your husband. She didn’t say anything but went back to her puzzle. I said, “You don’t look too excited that I am your husband. Should I have said, ‘I am your very good friend, Richard?’” She gave me a smile and said, “Yes.” I said, “Well, that’s who I am.” She said, “Good” and then went back to her puzzle.

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Our Conversation This Morning

At 6:30 this morning as I was finishing up in the bathroom, I heard Kate say, “Hey.” I went to her bedside and asked if there were something I could do for her.

Kate:              “I want to go to the bathroom.”

Richard:        “I can help you with that.”

Kate:              “Where is it?”

Richard:        “Let me help you up, and I’ll show you.”

When she stood up, I took her hand.

Kate:              “Boy, am I glad you’re here.”

Richard:        “I’m glad to be here with you.”

As we reached the bathroom, she wanted to shed her overnight underwear.

Kate:              “This is no fun. I know it’s not for you either.”

When she finished, she went to the sink to wash her hands and brush her teeth. Then the conversation continued.

Kate:              “Richard, I’m so glad you are here. You take such good care of me.” (We embraced) “I wouldn’t know what to do without you.”

Richard:        “And I don’t know what I would do without you.”

Kate:              “What’s your name?”

Richard:        “Richard, and I’m your husband.”

Kate:              “Oh. What do I do now?”

Richard:        “It’s still early. You can go back to sleep if you want.”

She did, and we walked hand in hand back to bed.

Kate:              “Thank you. You know I can’t live without you.”

Richard:        “I love you and will always take care of you.”

Kate:              “You already are.”

During our entire conversation, she never displayed any sign of anxiety or panic. She was, however, feeling insecure and grateful for my help. The way she acted it sounded like a rather clear understanding that she has a serious problem and views me as someone she can trust to care for her. We talk about our love for each other all the time, but in this moment it seemed that each of us fully recognized our situation for what it is.

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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.

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A Happy Moment This Morning

For the second day in a row Kate was up early. Yesterday she was ready to get up around 9:00. Today it was only 7:30. This was one of those mornings she clearly did not realize she was in her own home or my name or relationship. Perhaps because she didn’t know who I was, she wasn’t quite as eager to have my help. Several times when I tried to help, she said (in an unflattering way), “You think you know how to do everything.”

She started warming up to me as I helped her dress. Entering the family room provided the catalyst she needed to feel better about the day. I walked with her around the room as we looked at the flowers inside and out. I told her I wanted to show her something and walked her to a photo of our son when he was about eight. She always loves this picture. Today was no exception. When she asked who he was, I told her he was our son. She reacted to the word “our” and said, “No.” I said, “Well, he is your son.” That was better. I also showed her a picture of her father.

From there we went into the kitchen where I had set out her meds. After she had taken them, she noticed a card on the island and asked what it was. It was a card from her P.E.O. sisters. I had shown it to her last night, but she had forgotten. I read it to her along with the handwritten message inside. She was touched, and tears filled her eyes. She loved the beauty of the cover page that had three hearts on it as well as the tender message itself and asked if she could take it with us. I told her that would be fine. It was still a few minutes before we left, but she held the card in her hand and admired it. She asked several other times if she could take it with us.

Once we were in the car, she held it against her breast and said, “I’m going to keep this forever.” She kept talking about how beautiful it was. As we walked from the car to Panera, she held it carefully in her hand and told me once again how much she liked it. I said, “I love you.” She said, “You know what I think. You’re a good guy, and I think I’ll learn to love you too.”

We took our table at Panera, and  she carefully placed the card standing upright so that she could look at it while eating her muffin and working on her iPad. A short time later she picked up the card and looked at it again. Knowing she wouldn’t be able to read the note, I asked if she would like me to read it for her. She did. When I read “Dear Kate,” she said, “How did they know my name?” I explained that she had been a member for many years and had served as president. She had no memory of that at all.

Incidentally, the blueberry muffin was also a big hit this morning. It was like this was the first time she had every had one. Thirty minutes after finishing it, she wanted something else. I asked if another muffin would be all right. She beamed. Thus far, the morning has been just another Happy Moment of many that she and I experience. She remembers very little, but she is not “suffering.”

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Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.