“Knowing” and “Not Knowing” Me Experiences

I’ve found caregivers as well as friends attribute a special significance to those moments when our loved ones fail to remember us. The first time it occurs is especially noteworthy. I remember the first time my mom told me she didn’t have any family. I said, “What about your sons?” She said, “I don’t have any sons.” Looking back it may have been my first wake-up call as to how far along her dementia had progressed.

Surprisingly, I don’t recall exactly when I experienced that same moment with Kate. I know it was two or three years ago. I do recall that it was also a moment that signaled a new stage in the progression of her Alzheimer’s. There was certainly a touch of sadness, but not as much as one might guess. It was something I knew to expect. I just didn’t know exactly when it would happen. I also knew that because she didn’t know me at that time didn’t mean she wouldn’t know me at other times.

Since that moment, there has been a lot of variability in her knowing my name and our relationship. Sometimes she does; sometimes she doesn’t. I don’t test her, but I can often tell when she doesn’t. During the past year or so, she hasn’t known me by name or relationship most of the time. That is different now. It is not unusual for her to call me by name, but it usually occurs spontaneously, especially when she needs something. When she is talking to one of our sitters or the woman who cuts her hair, she often refers to me as “My Boy” or “My Guy” as well as “My Husband.” Sometimes she doesn’t recognize me, and asks me where I am using those same expressions.

As I have noted many times before, she almost always recognizes me as someone who is familiar to her and whom she trusts. That has been changing during the past few weeks or months. Yesterday was one of those days. Between 11:00 and 2:30 when I was finally able to get her out of bed, she didn’t know me at all. I believe that is why it took me so long to get her up. She didn’t recognize my face or my name. She didn’t look frightened, but she was suspicious of me. I should add that she didn’t know her own name. That, too, is very common. There is no way to be sure, but I think that most of the times when she doesn’t know my name she doesn’t know her own as well. It’s as though a switch has turned off in her brain and blocked all the signals for the people she has known best. That includes all of her family members including her parents.

After getting her up, she was perfectly comfortable letting me help her with toileting, showering, and getting dressed. Once out of the shower, she seemed to be less confused although tired. I got her dressed. Then she wanted to lie down on the bed. She rested about ten minutes. The rest of the day went well. I don’t know if she knew her name, or mine, or our relationship, but she responded to me as though she did.

When I got in bed last night, she said, “Who are you?” I gave her my name. She didn’t recognize it. Then she said, “Who am I?” I told her and said that we had met in college and been together since then. She didn’t challenge me. I said, “I’ve always liked you. In fact, I love you.” She held my hand and said, “Me, too.” I doubt that she knew my name or our relationship, but it was a nice way to end the day.

Addendum at 2:00 p.m.

Follow up to my earlier post

I heard Kate say, “Hey” just before 11:00 this morning. When I got to her bedside, she was about to sit up. I said, “I’m glad to see you, and I love that smile. You are very special to me.” She said, “I guess that’s how we’ve stayed married so long.”

I was surprised as this is a time when she is most likely to be confused and not remember me. Even on mornings when she responds to me as though she knows me, I don’t recall her ever saying something that so clearly indicates she knows our relationship. It was a very pleasant surprise. It was also a good indication of how she would feel getting ready for as well as going to and from lunch. She closed her eyes on the way home and is now resting on the sofa.

The Sleep Issue Continues.

Yesterday was almost a rerun of Saturday though this time I was more successful in getting Kate up. There was another difference. On Saturday, she seemed to be all right. Yesterday she was disturbed and unable or unwilling to help me understand what was bothering her.

Around 11:00, I put on a Julie Andrews album of music from Broadway.  That didn’t have any impact although I may not have given it as much time as I should have, less than fifteen minutes. The end result was that she didn’t want to get up. Because she was disturbed, I shifted gears and brought in The Velveteen Rabbit. That calmed her, but she went back to sleep before I finished.

In the meantime, I received a call from the agency that provides our sitters. The sitter was running late. That meant I would be late to my Rotary meeting. I thought about cancelling but decided to be late to the meeting. The minute I hung up I felt that I made the wrong decision and called them back. Given Kate’s situation, I thought it would be better if I skipped the meeting altogether and see if I might get her up a little later.

I ordered lunch to be delivered by Panera. I let Kate rest while I ate lunch. Then I tried getting her up again about 12:30. She wasn’t interested. I decided she should at least have a little juice and one of her morning meds that has an uncomfortable side effect if it is skipped. She drank a little juice, but she refused her pill. She was quite angry. I knew then that getting her up was a lost cause for a while.

I returned to the bedroom about twenty minutes later with (you guessed it) The Velveteen Rabbit. I also took a couple of her photo books in case TVR let me down. She didn’t want me to read to her, but I told her I would like to read it myself (out loud, of course). She didn’t protest, but she closed her eyes and didn’t express any audible interest until after I was mid-way in the book. Then she began to make audible expressions that fit with what was happening in the story. That was a good sign. I forged ahead with some optimism.

She opened her eyes and kept them open through the end of the book. I said, “Thank you for letting me read that. It’s a nice story.” She nodded her agreement. I was developing some confidence, but I didn’t want to abruptly suggest she get up for lunch. I held back. Instead, I told her it was also nice to be able to share the story with her and went on to say that she was very special to me and how much I like our being together. I said, “I hope you feel the same way.” That enabled us to have a brief conversation about our feelings for each other. After a few minutes, I was able to get her up and dressed.

When we got to the family room, she stopped to look at some of the poinsettias that are thriving but now have mostly green leaves. Then she wanted to rest. She rested about thirty minutes before I asked if she would like something to eat. We spent the next hour at the kitchen table chatting while she ate. We followed that with one of our tours of the dining room and living room. She wanted to rest again and took her place on the sofa until it was time for dinner.

The rest of the day went well. We had a pleasant afternoon and evening. She was tired when she got in bed but didn’t go to sleep right away. She didn’t, however, encounter any uneasiness. She just rested while I played YouTube music videos for her. There was no need for TVR. I think she went to sleep soon after I got in bed. I know I did.

A Day of Sleep

Saturday was a day that Kate slept/rested until almost 3:30. It was in the early spring of this year that she first stayed in bed so late. Since then, there have been 3-4 other days like that. She didn’t get out of bed until 5:15 one of those days. In addition, there have 5-10 days in which I thought she wasn’t going to get up, but I was successful in coaxing her.

On some of those occasions, she was scared of something she couldn’t identify while she seemed all right the other times. She just didn’t want to get up. Saturday was like the latter. In fact, she surprised me. When I tried to get her up around 11:00, she was awake and greeted me warmly. I told her I was glad to see her and wanted to take her to lunch. She smiled. She told me that sounded nice.

The problem occurred when I told her I had her clothes out and would help her up. She said, “In a little bit.” That didn’t sound good. When she says that, she doesn’t usually follow through. I told her I would let her rest a little longer and came back in fifteen minutes. It was clearer that she wasn’t going to get up. I tried several times over the next hour and a half and then gave up.

Close to 3:30, I returned to try again. She was awake and in a good mood. I had no problem getting her up, showered, and dressed. I had already decided we would have an early dinner, so I didn’t get her lunch. I gave her some juice and blueberries. Then we enjoyed our time together looking at her photo books.

She hasn’t been as interested in the YouTube music videos, so I tried something different  after returning home from dinner. It was early enough that I decided to put on a DVD of Sound of Music. She has responded to movies for a long time, but I thought it was worth a chance, especially because of the music. She lay flat on the bed with her eyes closed most of the time. She didn’t appear to be watching or paying attention, but she remained awake until the end. At one point, I asked if she was still watching and was prepared to turn it off. She wanted to continue. She went to sleep without a problem after that.

She apparently got enough sleep. The next morning she was up before 7:00.

How Long Can The Velveteen Rabbit Last?

I know there is no end to the challenges that Kate and I experience. “Living with Alzheimer’s” isn’t something that gets easier along the way. I do wonder what will remain in my “caregiver’s toolbox” in the months ahead. My guided tours of our house with a focus on pictures of her parents and grandparents and other items from her parents’ home are no longer as effective as they were only a couple of months ago. I also find that I need to come up with new commentary related to the various family photo books in order to engage her attention.

Then there’s The Velveteen Rabbit. That something I haven’t relied on too heavily though it has come to the rescue 4-5 times over the past few days. She never gives any indication she has heard it before, but that’s true for other things that no longer have the same appeal. At the rate I am using it, I should soon find out how long it works. In the meantime, I’ll continue to pull it out when I feel the need.

That shouldn’t be long. Kate’s changes come about surprisingly quickly. One minute all is well, and the next she is disturbed about something. That happened two nights ago. The day had gone well and we had a nice takeout dinner. Then she was ready to go (home). We jumped in the car and drove for thirty minutes before getting home again. As usual, we went directly to the bathroom to brush teeth. That’s the first step in our nightly routine. She was in a good humor and brushing teeth was no problem. The next step is to take her nightly meds. That, too, went smoothly.

The final step is getting her out of her clothes and into her night clothes. That’s where I ran into a problem. It is pretty common for her to ask why she has to take off her clothes, but this time she simply got in bed with her clothes on. Not anticipating a problem, I told her I wanted to get her night clothes on before I took my shower. She said, “I’ll do it later.”  I knew that wouldn’t happen. In the first place, she wouldn’t know where to get what she needs or how to handle the nighttime underwear. I encouraged her to let me help her change for the night. She didn’t want any part of it. I saw immediately that it was going to be a losing cause. I backed away and told her I would take my shower. Each of us was annoyed by the other.

When I finished my shower, and as though I were going after my weapon for battle, I got The Velveteen Rabbit once again. When I got back, I said, “I thought it might be nice if we read a bedtime story.” Then I proceeded to read the book just as though we had never had the earlier clash. Like the past few readings, she didn’t show any sign of interest or approval when I started. By the end, however, she was a different person. At least for the time being, the Rabbit still works.

We talked a few moments about how much we both like the book. Then I said, “Well, it looks like it’s time for bed. I’ll be glad to help you change into your night clothes.” That was all it took (and, of course, TVR). It took no more than five minutes to get her changed and back in bed. Best of all, we were both in a good mood. That’s always a nice way to end the day.

Challenges, and The Velveteen Rabbit

Recently, Kate has experienced more and longer periods during which she seems to sink deeper into her Alzheimer’s. The primary symptoms involve her being tired, not wanting to get up in the morning, confusion related to not knowing where she is, who she is, and who I am. Her response has been withdrawal and fewer moments of cheerfulness. She has continued to rely on me to help her, but there have also been times when she responds to me like I am a stranger she mistrusts. One night she was very suspicious of me when we went to bed. I don’t recall another that has happened.

During the past few days, there have been at least four specific instances in which she didn’t know “anything” and seemed frightened. One of those occurred when she didn’t want to get up for lunch. I tried several times. She declined each time, and I let her continue to rest in bed.

The last time was over an hour after my first try. When she refused again, I asked if she would like me to read to her. She didn’t. I told her there was something I wanted to read and asked if she minded if I read it. She shrugged. I went to the family room and got The Velveteen Rabbit (TVR). I started to read. She wasn’t interested. I continued to read, and as I did, I could tell that she was paying more attention. By the time, I reached the end, she was fully absorbed and touched. I said, “Isn’t that a nice story?” She agreed. We chatted briefly. She was very much at ease. Then I asked if I could help her up for lunch. She said yes.

The next night she got in bed shortly after dinner. She was still awake an hour and a half later. That is not unusual, but she me what she could do. I got TVR again and read it to her. It worked the same way it had the day before.

Yesterday morning, she was awake and ready to get up at 6:30. After breakfast we spent some time with one of her photo books before she was tired. She was asleep when the sitter arrived at noon. I decided not to wake her before I left for Rotary. That may have been a mistake. When I got home she was still resting on the sofa. The sitter told me Kate wouldn’t talk to her the entire time and didn’t want the sandwich I had ordered from Panera.

After the sitter left, she wasn’t especially happy to see me and appeared to look at me with suspicion. I told her I was glad to see her and that I would like to read something to her. She didn’t express any great desire, but she didn’t protest either. Once again, I picked up TVR. The effect was the same. We talked a few minutes about how much we like the book. Then it was time for dinner.

Last night, we had a repeat of the night before. She was in bed a good while before she wanted to know what she could do. I read TVR again. This time I wondered if it would have the same impact since I had just read it to her before dinner. That was not a problem. She was perfectly at ease when I finished. Was her memory any better? I don’t know. I didn’t test her. I only know that she was comforted and went to sleep.

Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

Alzheimer’s Has Been Testing Me For The Past Two Days: Part 1

Preface

I wrote most of this post yesterday (Saturday). That was 24 hours after I started. My intention was to write a brief summary of a special time Kate and I had Friday morning. I dropped those plans when other things took precedence. Although the morning had gone very well, the day turned out to be most unusual and very challenging. Even more unusual, was that it marked two days in a row that Kate faced problems that were especially difficult for me to address. A lot has happened. I won’t do justice to what occurred, but here’s the story in two parts, starting with Thursday.

Kate got up early on Wednesday and didn’t rest as much as usual during the day. Thus, it was no surprise that I needed to wake her on Thursday. At 11:00, I played music to wake her up gradually. After 30 minutes, I went in to see if she was awake. She wasn’t. That is unusual. Normally, she would be relaxing in bed while the music plays.

When I spoke to her, she responded and seemed sleepy but not disturbed in any way. I sat down on the bed beside her and chatted with her a few minutes. I told her it was getting close to lunch time. She wasn’t interested and said she would get up “in a little while.” We didn’t have any immediate plans, so I told her I would check a little later.

I checked at noon and again at 1:30. She still did not want to get up. She had a hair appointment at 3:00, so I tried again at 2:00. Still no luck. This time she looked somewhat disturbed and said, “Shhh” when I spoke. She pointed to the ceiling and very softly said, “See them?” I nodded and hoped that she wouldn’t ask me about “them.” She didn’t.

I mentioned that she had a hair appointment. She wasn’t interested. It didn’t matter if I cancelled, but I thought it might help her to get up and out. I encouraged her to go but decided not to push her.

I left the room to cancel the appointment. When I returned, she still seemed a little disturbed. I got in bed with her and put my arm around her. I told her I was there to help her with anything she needed and that I would protect her. We were mostly silent for almost an hour before she spoke. She sounded more awake. I told her it was after 3:00 and wondered if she would like to get up. This time she agreed. She was at ease again.

I’m not sure I understand why. I do know that “things” in her brain are changing all the time. She can change very quickly. Typically, that happens after she rests. My own guess is that her mind wanders a lot and she begins to have delusions and/or hallucinations, some of which trouble her. In the case of not wanting to get up, being patient often works. Comforting her also helps to shift my role from being the bad guy who wants her to do something she doesn’t want to do to that of a partner who really cares and wants to help. There are still a lot of unsolved mysteries for someone caring for a loved one with dementia.

Something else unusual happened that day. As I was helping her dress, she mentioned that she was going to have a baby “tomorrow.” She often thinks of herself as a much younger single woman and mentions that she wants to have children someday, so I didn’t think much about it until she said something else a short time before going to dinner.

We were looking at a family photo book when she said, “Where is the baby?” Things like this always raise a question for me, “What do I say?” The reflexive answer is always “What baby?” or “We don’t have a baby.” I didn’t think they were appropriate. She obviously thought we had a baby. I saw her stuffed bear sitting in a chair a few feet from us and said, “Oh, he’s right there.”

When I do something like this, I am never certain that what I decided will work, but I felt my options were limited. This time I was successful. I brought the bear to her, and she took it in her arms and held it lovingly like a new mother holding her newborn. We spent the next 15 minutes talking about the baby. At one point, Kate spoke to her (the gender changes frequently) and said, “I love you.” Then she looked at me and said, “Did you hear that, she said, ‘I love you, too.’”

It was close to the time I planned for us to leave for dinner. When I mentioned that to Kate, she said, “What about the baby? I can’t leave her.” Then I dug myself a hole and climbed in. I told her I knew someone who could come over and pretended to make a phone call to him. I didn’t think this through but assumed she would forget before we left. Not so. For the next few minutes she waiting impatiently for his arrival. Then she got worried about leaving the baby. I told her he was a nurse with lots of experience, but she continued to be concerned.

My next attempt to address the situation was to tell her I could call him back and ask if he could meet us at the restaurant. She was fine with that. Once again, I depended on her inability to remember what we were going to do before getting to the restaurant.

She continued to hold the bear in her arms all the way to the restaurant and at least once or twice said something about our meeting the nurse. Fortunately, she completely forgot everything but her baby before we arrived. We got out of the car. She cuddled her bear in her arms, and we walked in.

The hostess took us to a table with just two chairs. I asked if she could bring us another just in case Kate wanted to put the bear in a chair while she ate. She brought one, but Kate continued to hold the bear in her arms. I wondered what she would do when the food arrived. I soon found out. She wanted to put the bear down but didn’t know where. I got up and took the bear and placed him in the third chair where she could see him. That worked. We had a good dinner. When we were through, I picked up the bear and gave him to her, and we walked out to the car. There were no more surprises that day.

(See the post above for Part 2.)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Food Art

6:45 This Morning. The frying pan was ready, and I was about to put in the eggs. I heard Kate say “Hey.” I went to the bedroom, but she didn’t recall saying anything. I told her I was about to have breakfast and to call me if she needed anything. Just as I reached the kitchen, she called again. I went back to her. She didn’t remember calling me. This happened several times. She would say “Hey” or “Hello,” and I would go to her.

The last time, I asked her if she would like breakfast. She said she would. Before getting up,  she didn’t know who I was and was somewhat suspicious of me. When she asked who I was, I told her. That didn’t appear to relieve her, but she didn’t protest when I helped her out of bed and took her to the bathroom. She held my hand all the way, and we went through our normal bathroom routine. Then I helped her dress.

We went to the kitchen where I gave her some juice and a bowl of blueberries while I cooked the scrambled eggs I had intended for myself. Then I cooked another batch for me. She eats very slowly, so I finished long before she did. As it turned out, she never finished. Her aesthetic interest in the meal took precedent over her hunger.

I first noticed that she had poured the blueberries from the bowl to the plate with her eggs. I didn’t think much about that. She often transfers food from one plate or bowl to another. I think I recently commented on her pouring her juice into a bowl with blueberries and strawberries.

She didn’t stop there, however. For the next 30-40 minutes, she arranged and rearranged her food, the locations of the plate, bowl, napkins, as well as her fork and spoon. She very meticulously picked up one or two blueberries at a time and put them in various places on and off her placemat and the table around it. She wasn’t satisfied with moving just the blueberries. She also picked up bits of the scrambled eggs and carefully placed them on the table and on a napkin.

Midway through her creation, I asked if she would like me to take a picture. She did. I thought that would be the end, but she continued to reposition the items. I took two other photos although they did not turn out to be the last arrangement.

When she was finished, I started to pick up the plate with the eggs and blueberries still on it. She stopped me and said, “They will come in with some money and take it.” I didn’t ask her to explain.

We got up from the table and walked into the family room where I picked up The Velveteen Rabbit. I had only read the title before she wanted to rest. I went back to the kitchen and cleaned up the art. Now I am sitting across from her while she sleeps. She really does need the rest.

Off and she has spoken a few sentences as though she might be dreaming and talking with someone. Once or twice, she looked up at the ceiling and appeared to be talking with someone. And, just a moment ago, she asked who I was. Except for a few moments before she got up, she hasn’t seemed disturbed by her confusion. In fact, she has been a little playful with me. After asking who I was, she asked if I was a girl. I told her I was a boy. She asked my name. When I told her, she said, “You’re a girl. Your name is Carol.” Then she chuckled.

Emotional Times

I always assumed that the last stage of Kate’s Alzheimer’s would involve sadness for me. That is happening now although it is only periodic. It is minimized by the many happy moments we continue to experience. In addition, there are times for which neither happy nor sad seems to be the right word. Those are tender moments when each of us feels a deep sense of love for the other as well as (at least on my part) the recognition that time is running out.

Sad moments for me occur when Kate is disturbed by her lack of memory and any sense of where she is or what she is supposed to do. Most of these experiences are in the morning and have become almost routine. I know how to comfort her, and most of them are not as serious as others. For that reason, I don’t usually feel sad.

Several days ago, she had an experience that was very upsetting to her and to me. It was definitely a sad moment and not one that happened in the morning. She had finished resting in the family room. I looked over at her and saw that her eyes were open. The expression on her face was one of concern. I asked if I could help her. She said yes, and I walked over to her. She wanted to go to the bathroom.

On the way, she continued to act as though something was troubling her. What I initially saw as concern wasn’t about getting to the bathroom. While seated on the toilet, she tilted her head down and held it with her hands. I don’t remember exactly what she said, but she was in tears and distraught. She said, “I feel like I am not alive. I don’t know anything.”

This was as sad a moment as I have felt. I focused on comforting her. I said, “I know you’re not yourself right now, but I want you to know I am with you and will always be with you.” When we finished in the bathroom, I took her to the family room where we took a seat on the sofa. I told her I had something I wanted to show her and picked up a three-ring binder of information about her and her family. I reminded her that she frequently asks me to “write that down for the book” she plans to write about her family and told her that the binder contained some of the information she had wanted.

She responded quickly. Offering comfort and diverting her attention are a powerful combination. I don’t know that it will always work, but, so far, it has.

Saturday morning, we shared a tender moment. I put on a Judy Collins album before trying to get her up. It was still playing when we got to the kitchen to take her morning pills before leaving for lunch. As usual, my focus was seeing that she took her medicine and wasn’t thinking about the music. Collins was singing “Amazing Grace.” The music caught Kate’s attention. She stopped taking her pills and commented on how beautiful it was. With tears in her eyes, she grasped my hand and held it tightly. I put my arms around her. She began to cry, and so did I. We stood there, arms wrapped around each other and enjoyed the moment.

As I reflect, I don’t believe either of us was simply responding to the music. Like many people, we love the song, but we have never reacted to it this way. I believe it was a catalyst that heightened our existing emotions. Music can do that. That may be especially true for us because we have devoted so much of our attention to it since Kate’s diagnosis.

This an emotional time for us. She is struggling with the symptoms of her Alzheimer’s. It is frightening not to know anything. It’s also an emotional time for me. I’m happy when she is happy, but the corollary is that I suffer when she suffers. In addition, I experience something she can’t. Although I can’t predict the future, but I am very mindful that our time together is rapidly diminishing. Music can move us anytime, but it is especially powerful when our emotions are on “high alert” as they are now. I am sure it will continue to bring us comfort in the days ahead.