All’s Well That Ends Well

Morning confusion isn’t something new for Kate. She isn’t usually frightened by it, but that happened earlier this week. She was sleeping soundly at 11:00 when I went in to wake her. The look on her face is always the first sign of how she is feeling. She often smiles. Sometimes, she is quite cheerful. Sometimes, I see the look of confusion. This time, I sensed fright and said, “You look scared. Are you?” She nodded.

I launched into what has become a common routine. I try to be reassuring and say, “I can help you. You and I met at TCU and have been together ever since.” She looked doubtful that I could do anything for her. I went on to tell her that I knew a lot about her and her family. Then she said something that I’ve never heard her say before and can’t remember her exact words. She conveyed that she wasn’t able to think of anything, something that fits what I have perceived before as her mind’s being a “complete blank” though she had never been able to articulate it.

When I repeated that I would like to help her, she said, “What can I do?” I told her it would probably help if she could get up and get dressed. I went on to say that I thought she would feel better after she got up. She surprised me when she said, “You’re probably right.” I was encouraged by that, but when I asked her to give me her hand to help her, she said she couldn’t do it.

I sat down on the side of the bed and talked with her a few minutes and tried again. She wasn’t ready. I gave her a little more time but continued to sit with her. When I tried again, she was cooperative. She was very uneasy as we walked to the bathroom and had the normal confusion about what to do once we were there. As we completed each step, she seemed to be more at ease. By the time we walked into the family room on the way to the kitchen, she seemed fine. We stopped a few minutes for her to enjoy the flowers and plants and to rearrange a few things on one of the tables.

Breakfast went well. She enjoyed her food, and the music I was playing. When she finished eating, I asked if she would like for us to spend some time together in the family room. She wanted to stay at the kitchen table. I don’t think I have commented on this before, but she seems very comfortable sitting there. One of the sitters told me that once she wanted to remain there after lunch, and they stayed there for a couple of hours.

That evening she was fine when she got in bed. Two hours later when I was about to get in bed, she had that look of fright on her face and asked who I was. She wasn’t reassured after my telling her. Then I thought of The Velveteen Rabbit. She wasn’t particularly interested, but I read it anyway. Midway through the book, she was making her audible responses to the passages I read. She was fine when I finished. I said, “I love you,” and she said, “I love you, too.” Another rough edge smoothed out.

An Experience I Couldn’t Handle

This morning I ran into a problem with Kate that had me stymied. She had just sat up after a short rest. I sat down beside her with the intent of looking at one of her photo books. It turned out that she believed she had to be someplace about that time. She said she was supposed to meet a group of women at her house. I didn’t think much of it because I am usually able to distract her so that she forgets whatever she has imagined.

This time was different. She thought she was running late and had promised “people” she would be there. Knowing that she didn’t have any obligations, I told her I didn’t think her meeting was today but tomorrow. If she accepted that, I was confident the whole issue would have been forgotten; however, she was sure that she was right. It was about time for lunch, so I suggested we order a takeout lunch and then I would take her to her house. She was fine with that and off we went.

On the way, she forgot that we were going to pick up our lunch. She became increasingly worried about being late. I assured her we would go directly to her home after getting our lunch. When we arrived, she didn’t recognize our house as hers. I mentioned that she might be thinking of her house in Fort Worth. She was adamant that I was wrong. I said, “I do remember that you have a meeting tomorrow, but I didn’t know about the one today.” She remained sure that it was today.

I told her we had lived in the present house for twenty-three years but that we had lived in two other houses in Knoxville before that and suggested she might be thinking of one of those. I added that other people were living in both of those.

She was almost in tears as we ate our lunch. She told me that she didn’t know what to do. I told her I wanted to help her but was in the same boat. I didn’t know what to do. Then she surprised me by saying, “It’s not your fault. You are trying to help me.”

Again, she asked if I would take her home. It was only thirty minutes before the sitter was to come, and I hesitated leaving but told her I would take her. I drove her by each of our previous homes. Fortunately, one was just around the corner and the other only two miles away. She didn’t recognize either one as her home.

She began to calm down as we drove. By the time we returned home, she was fine. The sitter arrived shortly thereafter. When we saw her, I said, “Look who’s here. It’s Mary.” Kate beamed and greeted her. They began chatting, and I got my things together and went to my office. She had suffered for almost two hours, but the crisis was over. I think the only thing I did that was helpful was to convey my desire to help her. None of my specific efforts to solve her problem was successful.

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.

From Low to High in Thirty Minutes

In my previous post, I mentioned that recently we’ve had a range of experiences from high to low. Sometimes the change comes quickly. That was true night before last. I was about to get in bed when I noticed that Kate was awake and looked frightened. I asked if I could help her. She asked my name and then hers. She told me she was scared, that she didn’t know anything. Typically, this happens in the morning. She is not normally this way at night. She was also more frightened than usual.

I took my usual approach to her when this happens. I tried to be as reassuring and comforting as possible. I told her I thought I could help her and that I knew a lot about her and her family. I mentioned that we have a number of family photo books that have a lot of information about her family. She said she would like to see them.

I brought her the “Big Sister” album that her brother made for her. I didn’t try to go through the book. Instead, I focused on selected photos and sections starting with the cover photo of her and her brother. She has always been taken by that picture. We went through a few early pictures soon after each of them was born. Then I skipped to a section that has several of our wedding pictures. It wasn’t long before she was relaxed and said, “I feel better now.”

The quickness of her change was striking. I don’t think she remembered her past any better than she had before we started, but the pictures and information gave her a sense of comfort. No longer was she adrift without any connection to world. Kate’s brother Ken, who also has Alzheimer’s, created the book to help her as her memory faded. He could not have known how valuable it has been. I am grateful to him for this gift that keeps on giving.

Busy Days

I have felt rather busy the past three days. Most of that has involved Kate directly. Two of those days she was up early for breakfast. She rested periodically during the day, but she required more attention during those times she was up. We’ve had a full range of experiences including highs and lows.

One of the highs involves another long conversation during dinner two nights ago. Again, it was one in which I was only a listener/facilitator. It started when she asked “the name of this place.” I told her it was a house and that it had an address but not a name. Then she asked my name. The manner in which she asked told me that while she was comfortable with me, she didn’t recognize me as her husband.

She made a few comments about our home. Then I asked her to tell me about her mother. She took a moment to think. It was obvious that she couldn’t remember the information that would help her answer my question, but she did say that her mother liked to help people. That is something that she often says.

That initiated a long conversation about how people treat one another. It was a rambling conversation, much of which I didn’t understand. She frequently searched for words. What I felt was most significant about it was that she was enjoying heerself. That’s why I would consider this a Happy Moment.

The high point of that day occurred after she had been in bed for over two hours. I had just finished my shower. When I walked into the bedroom, I found her standing in front of the TV watching a YouTube video of a duet from La Boheme sung by Jonas Kaufman and Anna Netrebko. She was emotionally engaged. It’s a favorite of mine, and I stood there watching with her until the end of the duet. Although Kate and I have always enjoyed music together, her preferences have been for musical theater and less for classical, especially operatic performances. Since her diagnosis and our binging on music, her musical tastes have expanded tremendously. It has been especially pleasing to share the joy of music with her. Thus, this moment standing in front of the TV in the dark and in our night clothes was a special moment.

That wasn’t the end. The next video to play was the second movement of Rachmaninov’s Piano Concerto No. 2 played by a woman I didn’t know. That movement is another favorite of mine, one that I have included in my “soothing music playlist” I use with Kate. By this time, Kate wanted to sit down. We took a seat on the bench at the end of our bed to watch the performance. The audio alone is enchanting, but the addition of the video of the pianist and the conductor and orchestra added immensely to the intensity of feeling. When the piece ended, I turned off the TV, and we went to bed. It was a beautiful way to end the day.

We have also had some trying moments. I’m thinking specifically of getting ready for bed. Before Kate gave up her iPad, she used to work jigsaw puzzles from the time we got home from dinner until getting ready for bed. At some point, she would get tired or I would tell her it was getting to be bedtime. Then I would help her get ready. Occasionally, she was still wrapped up in her iPad and didn’t want to stop.

The loss of that activity has left a void in her schedule. She has gravitated to getting in bed shortly after dinner and, since Covid-19, after our nightly drive around town. That means she gets in bed as early as 7:15. She is rarely asleep before I get in bed between 9:30 and 10:00.

That has gone rather smoothly until the past week or two. She is still eager to get in bed, but she doesn’t want to take off the clothes she has worn all day. Most days there is no problem. When there is, I have to carefully coax her, and I am not always successful. In those cases, she can be adamant about not cooperating. We’ve had trouble the past two nights. I hope this is not going to become a serious problem.

There is one other bedtime issue. Within the past couple of weeks, she has been insistent on my running my fingers between her toes, pulling strands of her hair, and also running my hands across her body. She seems to be concerned that there are “things” between her toes or on her body that she wants removed before going to bed. The problem for me is that it often comes at a time when I am beginning to wind down. I have been complying although she doesn’t think I always take it as seriously as she thinks I should. She will demonstrate how to do it and then ask me to try again.

I know these are minor issues, and I hope they stay that way.

Our Busiest Day

From time to time, I’ve said I wish my memory would allow me to report more clearly the things that Kate and I experience while “Living with Alzheimer’s.” That has never been truer than the following account of what happened yesterday. The best I can do is to sketch what happened without the full details that would enable you to get a better feeling for what it was like.

It is unusual for Kate to get up during the night, but the day began at 1:00 a.m. when Kate said she wanted to go to the bathroom. We took care of that without any difficulty and returned to bedroom. I don’t think either of us was awake too long after that.

At 5:00, Kate was awake again and said, “What do we do now?” I told her it was early and that it would be good to go back to sleep. I think she did. I know I did and woke up for good about 6:15.

I had just finished combing my hair when she came to the bathroom door. She was looking for something. She had already gone to the hallway and family room just outside our bedroom and turned on the lights. I don’t remember what she said, but she had the impression that guests were coming to the house, and she needed to prepare for them. Typically, when she gets up, she is a little groggy. This time she seemed awake and on a mission.

I suggested that she use the toilet so long as she was there, and she agreed. Then she said, “What now?” I told her it was still early and that going back to bed would be a good idea. She was very compliant, and I got her back to bed. I went back to the bathroom to shave and then got dressed.

I had finished my breakfast and was about to take my walk when I heard her call. I went to the bedroom and found her ready to get up for the day. She was concerned about the guests who were coming and wanted to make sure the house was in order. I got her dressed and invited her to breakfast. I had a fruit muffin left over from our takeout meal the night before and heated it in the microwave for her. Although she said she was interested in joining me for breakfast, it was difficult to get her to the table. It was another example of the passive aggressive response she has given when I wanted her to get up, and she wanted to stay in bed. As she has done in those cases, she hears me but ignores me.

I heated her muffin in the microwave and invited her to the table. She said she was coming, but she didn’t come to the kitchen. Instead, she walked around the house looking over things to see if they were in order. She keeps some of the paper doilies she picks up from one of the restaurants we visit regularly on her dresser in our bedroom. Before leaving the bedroom, she meticulously rearranged them along with a hairbrush. She continued this effort in the family room and kitchen.

It took several requests before she sat down. I was both puzzled and frustrated that she didn’t come right away. Ultimately, she came, but she only ate a portion of her muffin and some sliced peaches.

From the time she got up, she was concerned about being ready for our guests. She didn’t seem to know anything about them. She repeatedly asked me their names and what time they were coming. I told her she had plenty of time as they weren’t coming for two or three hours. She expressed mild initial relief. Then she completely forgot and started her questions again.

Kate was much more talkative, and her aphasia was evident. I had great difficulty understanding much of what she said. That was true the entire day.

When it became clear that she was not going to finish her breakfast, I suggested we spend time together in the family room. I got her to take a seat beside me on the sofa and picked up her “Big Sister” album that her brother had given her two years ago. We spent a long time with it, and the distraction worked beautifully. She forgot about our guests and getting ready for their arrival.

Our daughter called while we were looking through the album. Kate talked a lot, and Jesse was able respond appropriately. By that, I mean that she only made facilitative responses to Kate’s sometime unintelligible comments. That kept Kate going. I was happy because Kate was enjoying herself.

It was soon time for lunch. I wanted something quick and easy and chose the Brunswick stew I had purchased late last week. We had a pleasant lunch, and she wanted to rest. I was surprised she hadn’t rested during the morning because she had gotten less sleep the night before and assumed she would rest a long time.

She didn’t rest long before she seemed wide awake. We spent more time with photo books. She was getting along quite well. I told her I wanted to show her something in the living room. I am beginning to sound like a tour guide, as I take her through all of the items that were in her parents’ home. I don’t think that was the key at all, but she was very moved by everything I showed her. It was a moving experience for her.

When we finished the tour, we sat on the sofa. She was very emotional and said, “I feel so good. I can’t remember having a day so good.” She repeated this with variations for a few minutes. It was a special moment for me as well. We still had time before dinner, and she was tired and wanted to rest.

I took that opportunity to get on my laptop and sit in a chair directly across from the sofa where she was resting. I wanted to write this post. I had a second thought and decided I would send an email to Jesse and Kevin to let them know that we were having such a good day. I also thought that would provide a good start for writing a blog post.

I didn’t get far before Kate was finishing her brief rest. That made me think about getting something for dinner. I told Kate I would be in the kitchen and would call her when it was ready. While I was in the kitchen, she got up and started wandering around the family room. She called to me. (Yes, she used my name and did so most of the day.) I found her attempting to disconnect the router. She had already unplugged the cable that powers her lift chair. I told her not to touch the router and attempted to explain while knowing she could not understand. This was a frustrating moment because I had been heating some bean soup that had overflowed on the stove top.

I went back to the kitchen. She called again. She was working on the router. I reminded her that she should not touch it. I left for the kitchen. As I was cleaning up the mess, she called again. She had forgotten about not touching the router. I reiterated how important it was to stay away from it and suggested she come into the kitchen with me.

She wanted to help me, but I couldn’t figure out anything useful for her to do. She wandered around the kitchen picking up things. I keep a stack of bills and other communication that deserve attention on my desk. She separated those and arrange them on the desk.

She was back in the family room when I put the food on the table and called her to dinner. She said she was coming but didn’t. I went to her and told her the food was ready, and she could join me. I went back to the table, but she didn’t come. I tried another time and she came.

She was very talkative. It began when she look at something across from her and thought it was a person. Some of her comments were addressed to her and some to me. She talked and talked, but she wasn’t eating. Her aphasia was active. I couldn’t understand much of what she said.

I began to think she might have a urinary tract infection (UTI). I called her doctor’s office. No one answered, not even the answering service. I tried to contact the nearest urgent care center. They had closed for the day. I called Virginia, Kate’s brother’s wife. She is a retired pharmacist with a good knowledge of health and medical issues. I wanted advice on how to proceed. She said she would probably go to a 24-hour urgent care center if one were available. I looked and didn’t find one in our area.

I went back to the table where Kate was still sitting quietly in front of her food. I decided to give her a breakfast bar. She was very calm, nothing like she had been minutes before. That made me think it was not a UTI but Alzheimer’s that was causing the problem.

I cleaned up, and we went back to the bedroom where I got her ready for bed. She had a little difficulty knowing what she should do next and understanding what I told her, but that is normal. She was in bed rather quickly, and I put on an Andre Rieu concert from Maastricht. She relaxed and listened to the music. Nothing eventful happened after that. When I got in bed a couple of hours later, she was either awake or I waked her. She was as loving an affectionate as usual.

It was quite a day. Kate was confused and busy all day. I didn’t get my walk. I didn’t check email. I didn’t write a blog post. The possibility of a UTI was disturbing on a Sunday evening. I have often said that when Kate is happy, I am happy. The converse is also true. We had quite a mixture of happy and disturbed yesterday. I was up with her, and I was down with her. On the other hand, a large part of the day was as good a day as it can be including the end of it. I am very grateful for those “Happy Moments.” They offset the difficulties encountered the rest of the day.

Yesterday’s Roller Coaster Ride

One week ago today, Kate had her most difficult day. Yesterday was another day, the third in a week, that Kate has experienced similar symptoms. She was very tired, confused, and troubled/sad. She was smiling when I got her up. I helped her dress without a problem.

Everything was fine until we started to leave for lunch. I walked ahead of her from the bedroom toward the kitchen. She was coming out of the bathroom and didn’t see where I had gone and called to me. I turned around and went back. She was frightened. She said, “I know you wouldn’t leave me, but I didn’t know where you were.” That set the tone for getting to the car for lunch as well as leaving the restaurant and getting in the car there. She was simply frightened but didn’t know why. As she had done the day before, she said, “Help me. Help me.” as she got in the car. She got along well at lunch.

The worst time was during the afternoon after she had been resting for almost two hours. After that, I suggested that I read to her. That appealed to her, and I read a little from Charlotte’s Web. Her eyes were open, but it didn’t appear that she was paying attention. I stopped and asked if she was enjoying my reading to her. She seemed to be in a trance. I told her I would stop if she wanted me to. When she didn’t respond, I said in a louder voice, “Can you hear me?” Although she had her eyes open, she responded as though I had waked her from a deep sleep. Then I repeated my questions. She didn’t want me to read. She was tired and wanted to rest.

I agreed to that and remained in my chair close to her recliner. She became talkative but was delusional. I told her she looked frightened. She said she was. I asked if she could tell me why. She said, “I don’t know.” I told her I would like to help her. She said, “They want to kill me.” I asked who, but she didn’t know. We had just finished a chapter in Charlotte’s Web in which they talked about Zuckerman’s intent to kill Wilbur. I suggested she might have gotten the idea from that. She acted like that might have been a possibility. I feel sure it was.

Once again, she said she was tired. I felt like I should do something to divert her attention to whatever she was afraid of. Instead I let her rest a little while. It wasn’t long before she was talking about the house. It was obvious she didn’t realize we were at home. I shifted gears and told her I would like to show her something and asked her to come with me.

I took her hand and walked her to the living room where I pointed out several things that had come from her parents’ home. She was interested but sad because she said, “I never got to know my parents.” Then she went on to say that they had had a rough life and grew up poor. She also said she couldn’t remember anything about them.

She was most interested in a fresco we had bought in Italy fifteen years ago. It was the first time in the past year or two that I recall her being taken with it, even more so than some of the things that had belonged to her parents. She wanted to sit down on the sofa. Then she began to talk about the room. She said she “liked what they had done to the room.” My reminding her that we bought the fresco did not convince to her that this was our house.

It was very clear, however, that her mood was changing. By the time we got to the dining room, she was quite interested in several other items that had come from her parents home. It wasn’t quite 5:00, but I suggested that we get ready for dinner.

She was a little bit skittish getting in and out of the car and from the car to the restaurant, but she seemed fine otherwise. When we got home, I suggested that we sit together on the sofa in the family room and go through one of her photo books that features a family wedding veil that had been purchased by one of her aunts for her wedding in 1924. She was enraptured.

When we finished, we began a conversation about our marriage and the happy times we have had. It was a touching moment for both of us. Earlier I had made several recordings. I am especially glad that I recorded this one. There is quite a contrast between this conversation and the others. She was happy again.

When we finished, we went back to the bedroom where I put on some YouTube videos and helped her prepare for bed. Everything went smoothly. She was fine, but we had had some rocky moments. It was another successful example of diverting her attention from whatever was bothering her. It also reinforces my previous guesses that when she is passive, her mind wanders. She begins to imagine things that are problematic. Yesterday, it was women who were out to get her. I don’t know how long I’ll be able to divert her. I am glad that I have a number of different things that help – music, photo books, tours around the house, conversations about family and our marriage. I can’t depend on just one to come to the rescue now. The good thing is that it is still possible to turn her around, but it’s getting harder.

I was very disturbed by her rambling during the afternoon and suspect I haven’t seen the last of this. She is entering a new phase of this disease, one I don’t like. When she bounced back, I did as well. We had an especially good time with the photo book, and the day ended on a high note.

Although I feel better now, I believe she has taken a sudden decline. I have read other caregivers accounts of similar declines. In fact, one of those was reported in a Facebook post yesterday. I also know of a former college roommate who took a steep decline and died about a month after Kate and I had been with him and his wife. I know someone else with dementia who died less than six months after I last saw her and thought she was doing quite well. While I am not ready to let her go, I would prefer that she go quickly rather than lingering for years. I have suspected the latter since she currently has no other medical conditions that might shorten her life. That, of course, is beyond my control. I will continue to focus on keeping her happy and secure.

Morning Crisis

Yesterday, like a number of days recently, Kate was up at 7:30. That meant I didn’t get my normal walk, nor did I have time to upload a new post. This morning I was up at 5:20. I thought this would be a good opportunity to write a post about an experience we had last night. My plans changed quickly. I was about to walk out of the bedroom when I noticed that Kate was awake. I walked over to the bed to let her know I was going to the kitchen to fix my breakfast. When I reached the bed beside her, I recognized the look on her face. I said, “Are you afraid?” She nodded. I told her I could help her and that she was going to be all right? Then I said, “Would you like me to stay with you?” She said, “Oh, yes.”

She wanted to go to the bathroom. As I helped her up, she said, “You’re very nice to me. You’re the only one I can talk to.” I wasn’t sure if she knew who I was and said, “My name is Richard.” She said, “I know that. <pause> What’s your name?”

After using the toilet, she wanted to brush her teeth. I asked if she were still afraid. She said she was. I asked what she was afraid of. She said, “I don’t know. I don’t know what to do?” She talked a couple of minutes about that and said things like “I don’t know what’s going to happen to all of us.” “I just want to get out of here. I don’t really mean that, but . . .” (She didn’t finish.) “Thank you for helping me. You’re the only one I can talk to.”

I assured her that I could help her, that she could depend on me. I said, “Right now, I think you need to get back in bed and rest. We’re going to have a very nice day.” I started to leave for the kitchen for my computer, and she said, “Please stay with me.” I told her I was just getting my things from the kitchen and would be right back.

As you might expect, I turned on some soft soothing music and sat in the chair beside the bed. It wasn’t long before she was asleep.” I began to think about leaving to fix my breakfast, when she awoke and saw me. She had a smile on her face and said, “You’re here. How nice.” She seemed like herself, but now I feel I should stay a while longer. At least for now, the crisis is over.

Alzheimer’s Doesn’t Know It’s a Holiday, But We Do.

Kate and I talk a lot about the many things for which we are grateful. We’ll do more of that today. Let me say first that I am grateful to those of you who take time to read my often rambling accounts of our lives. I hope it provides an accurate glimpse of what “Living with Alzheimer’s” is like for us and that you may be gaining a little insight into the world of Alzheimer’s. The overriding message for us is how well we have gotten along. That easily claims first place among the things for which I feel most fortunate. I only wish that could be true for everyone who lives with this disease, but I am very mindful that others face far greater challenges than we have.

I am grateful for the kindness of family, friends and acquaintances who provide support, often without realizing it. I have also been touched by those who serve us in restaurants and customers in places we visit. Just this week I took Kate to the restroom at lunch. I’m always a little concerned in these situations because she has on several occasions locked a door to the stall or the restroom itself and been unable to open it. Sometimes she doesn’t know where to go once she is in the restroom or how to find the exit door. That day I opened the door and peaked in to see if anyone else might be in there. A lady was washing her hands. I pointed Kate in the direction of the stall and told her I would be right outside the door. It wasn’t long before the door opened and the lady who had been washing her hands invited me in. She told me she was a nurse and would stay with Kate. That wasn’t the first time people have helped in that situation. Little gestures like that have made the road smoother for us, at least emotionally.

It is a beautiful day. The sun is shining, and the today’s temperature will be in the low 60s. I look forward to this day with Kate. It will be the first we celebrate alone. Now don’t feel sorry for us. We will certainly miss being with family, but it will be easier on both of us that we are not traveling or hosting this year. I have an increasing recognition that our time together is limited, and I treasure the good times that we have when it is just the two of us.

Now let me segue to another aspect of our lives. Although we have many “Happy Moments,” they vacillate with more trying ones. Thus far, we have been able to handle each one of those. That includes one we had early this morning.

At 3:00, Kate said, “How do I get inside?” I said, “You’re inside right now. You’re in your own bed.” She wasn’t buying that. She asked again. I said told her I would show her but that it was the middle of the night and thought it would be better to do that in the morning. That wasn’t of any help. Then I told her I would show her. The first stop was the bathroom. Then we walked hand-in-hand through the bedroom, down the hallway outside our room, into the family room and kitchen, stopping in the laundry room. During our walk I tried to comfort her. She kept asking if we were going inside. I assured her that I was taking her inside. I turned her around and we walked back to our bedroom where I helped her into bed.

As I pulled the covers over her, she said, “You’re not going to leave me, are you?” I told her I would never leave her and that I would be right there on the other side of her. When I turned around to walk to the other side of the bed, she must have thought I was leaving. She said, “Don’t leave me.” She seemed very frightened. That didn’t stop immediately. I got into bed, moved close to her, and put my arms around her. She gradually felt at ease. By that time it was about 4:10. She was quiet until 4:30 when she asked again not to leave her. I assured her I wouldn’t, and I didn’t hear anything more from her. I think I went to sleep pretty shortly after that. I know I slept until 6:50 which is unusually late for me, but I know I needed it.

My best wishes for a Happy Thanksgiving to each of you.

Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.