Posted on

Morning Fright

For several years, Kate has periodically waked up and been frightened by not knowing anything (who she is, who I am, where she is, what she should, etc.). The “not knowing” has continued, but she has seemed less frightened or not frightened at all by it. I usually tell her who I am, her name, and that we met in college, fell in love, and have been together ever since. It doesn’t usually take long before she feels “all right.”

This morning her experience was different. It was much more like it used to be except her fright was less. It was more like she has been in recent years, somewhat more puzzled than frightened. I first noticed her less than ten minutes after beginning my morning walk. I walked to her bedside and could see immediately what the problem was.

My first effort to help her is what I described in the opening paragraph. It didn’t help. I got in bed with her, held her hand, and softly and calmly let her know that I wanted to help her. That seemed to give her a measure of security, but it didn’t solve the problem.

I had already turned on some relaxing piano music but decided to change to an album that had engaged her so much before Christmas. I started with “Edelweiss” and set it to repeat two times. As I was lying beside her, I created a playlist of other songs on the album that she also likes. I also interspersed “Edelweiss” several other times. (You may wonder how I can do this while staying in bed with Kate. The answer is that I control my audio system with my phone. It’s easy to use and has come in handy many times in similar situations.)

Once again, music came to my rescue. Before “Edelweiss” had ended the first time, she appeared more relaxed and closed her eyes. She soon fell asleep. I stayed with her long enough to be sure she was sleeping soundly. Then I finished my walk. It was forty minutes later, much longer than is usually required to calm her.

It’s been a long time since I’ve said this, but moments like this are among the saddest ones for me. Most of the time, Kate is happy. Of course, that makes me happy. I want her to be happy all the time. When she’s irritable, my emotion is “flat.” I mean that I’m neither happy nor sad. I do experience tension, but my focus is strictly on how to deal with the problem. When I’m not successful, I’m frustrated. That’s a different emotion altogether.

Kate’s being sad is much harder for me to deal with. I work hard to avoid her sadness. I don’t like to see her troubled in any way, and moments in which her brain is blank are the most disturbing moments of all for me. I talk a lot about our “Happy Moments.” I do that in this blog and in conversation with other people. I don’t do that to be deliberately misleading. I think those moments really are the most typical aspect of our journey with Alzheimer’s, but I don’t want to convey that everything is rosy. That’s impossible with life in general, and is certainly true for dementia, probably more so.

I’ve heard people say, “At least, she/he doesn’t know or is not aware.” That bothered me when my mother had dementia more than twenty years ago. I remember how often she said things like, “I don’t know what’s wrong with me.” She was bothered, and I have seen that many times with Kate. Her senses are still alive. She knows more than we imagine.

There is no way to solve the fundamental reason she becomes frightened. I can calm her when that happens, but I can’t cure her Alzheimer’s. That means moments like the one this morning will likely continue until the very last stages of her illness, and that makes me sad too.

Posted on

A Rough Start, But a Nice Day

Yesterday, as I was preparing for my morning walk (inside our apartment), I noticed that Kate was awake. She looked disturbed. It was easy to tell that it was one of those moments when she didn’t know where she was, who she was, who I was, etc. Her mind was an apparent blank. Although she didn’t recognize me, she didn’t appear to be afraid of me, only frightened by not knowing anything. This is something that used to occur occasionally before the pandemic. It seems to be making a unfortunate comeback.

I asked if she could tell me what was wrong. She said, “I don’t know.” I told her she had been sick and that sometimes caused memory problems. She said, “What’s my name?” I told her and then gave her my name and relationship along my usual recitation of our lives from college to having children. Sometimes she comes out of this fog rather quickly, but she didn’t this time. I turned on some relaxing music. Then I got her morning meds and gave it to her with some yogurt. I also made her a smoothie with cranberry juice, blueberries, and prunes, my latest effort to prevent constipation. I followed that with mandarin oranges. Her anxiety lessened, but she was still not cheerful. She looked a little tired, so I let her rest while I took my walk.

When I finished, she was very cheerful and talking to “someone.” That was the beginning of a day of talking and delusions that was only interrupted by an appointment with a podiatrist just before at 1:45. Knowing that the caregiver would have less time than usual to get her ready, I decided to fix her lunch. That was a good thing because Adrienne didn’t have to rush her while getting her dressed.

She remained in a good mood, but Adrienne and I were both a bit apprehensive about how she would respond to having her toenails cut. It had been too long, and Kate had protested vehemently the last time we tried. For that reason, I gave her half a tablet of Seroquel 25 mg. Normally, it takes effect with 15-20 minutes, but we couldn’t tell that it worked at all.

When we told Kate we were going out, she didn’t want to go. With a little coaxing, she agreed; however, her protest about leaving and the fact that the sedative didn’t appear to have worked added to my anxiety. Fortunately, the podiatrist’s “office” is only a short walk down the hallway. This is another benefit of moving from our home. We won’t trim her toenails again.

The podiatrist works primarily with seniors and visits a lot of local senior facilities in our area. Thus, she is experienced with the challenges she can face. Kate was quite comfortable with her. Her only protests came when the doctor lifted her feet to put them on a foot stool. She also screamed a few times during the trimming process, but she didn’t put up a fight.

After this successful experience, it seemed natural to stop for ice cream at the café we passed on our way to see the doctor. While Kate was enjoying the treat, two different people we have known from our church stopped at our table. We talked for about 30 minutes. When they left, we asked Kate if she were ready to go “home.” She said she wasn’t. We stayed another 30 minutes. During that time we asked several times if she were ready. Finally, we decided it was time and left. She didn’t protest at all. I’m glad she finds the café a relaxing place to spend some time. Adrienne and I feel the same way. It’s just nice to get out of the apartment.

We had more than an hour before dinner, so we spent that time on the balcony of our apartment. It was especially nice out as the temperature was much lower than usual.

Kate’s talkativeness had subsided until we got home. She began to talk again and didn’t stop until Adrienne left about 7:45. She even talked between bites at dinner. Once in bed, however, she relaxed and slept for about an hour. We watched a Peter, Paul and Mary concert on YouTube and then retired for the night. She was tired after a full day and was asleep in no time.

Posted on

Happy Day

When people ask about Kate, I often say that she is now at Stage 7 in her Alzheimer’s journey. I sometimes add that it is the last stage that can last for years. I feel sure my reply conveys the seriousness of this phase of the disease. For that reason, I usually add that it doesn’t mean that we don’t continue to have moments of joy. We do, and one of the interesting things to me is how often those moments are intertwined with the common symptoms of this stage. I am grateful because her life is now filled with more delusions, hallucinations, and confusion than she has experienced before. Yesterday is a good example.

Shortly after 8:00, I heard her say something and went back to the bedroom. When I reached her, she seemed wide awake but confused. That may seem a strange combination. What I mean is that she looked and sounded fully awake, but her confusion was obvious as I tried to get her up and into the bathroom.

I told her I was glad to see her and asked if she was ready to get up. She was but said, “What should I do?” I suggested she first move her feet and legs to the side of the bed. She didn’t understand what I meant, so I gently pushed them to the side. She said, “What now?” I told her to hold my right hand while I lifted her with my left. Some mornings this is difficult. She seems to be dead weight. This time she pulled my right hand, and I was able to lift her to a sitting position. It is not unusual for her to scream when I do this. She didn’t this time.

She was very uneasy getting to her feet, but we got to the bathroom without a problem. When I told her to take a seat on the toilet, she was confused and didn’t want to. That is pretty common, but this time she wanted to know why she should sit on the toilet. I gave a very simplified explanation that she couldn’t understand. Then I told her we could skip it. After I said that, she agreed to sit down. Afterwards, we washed her hands, and I gave her a toothbrush to brush her teeth. She didn’t understand what she was to do with it. I helped her get started. Then we went back to the bedroom to dress. That went smoothly.

For a very long time, Kate has responded with great interest when she sees the plants and flowers in our family room, on our patio, and the back yard. That has been less frequent in the past few weeks. It was back yesterday, and we took a few minutes to enjoy them together.

Once she was seated at the kitchen table, I gave her a glass of apple juice and her morning meds. She loved the juice (which she refers to as water) and took her pills without a protest. She actually seemed pleased I had given them to her.

The best was yet to come. I fixed her a slice of cheese toast. Kate didn’t remember having eaten it before and responded with enthusiasm. She ate it more quickly than usual, and I fixed another one. She was quite talkative while eating and after. (I may have noted in an earlier post that she seems to feel especially comfortable at the kitchen table and often wants to linger long after she has eaten. I think she likes the fact that the table is located beside a large window overlooking our neighbor’s front yard and that of another neighbor across the street. Two different sitters have commented on her wanting to stay at the table for as long as an hour after eating.)

I joined her at the table right after fixing her cheese toast. She asked my name. When I told her, she gave me her name, something she often doesn’t remember. It was one of many times during the day she didn’t remember my name or our relationship. Then she began a lengthy conversation. I wish I could tell you what she said, but her speech was so garbled that I couldn’t make any sense of it. Everything she said emanated from a delusion. I do know that she mentioned her mother and later in the conversation made references to other people (“she,” “he,” “they”) and assumed that I knew them. It was light-hearted chatter, and she laughed a lot over 30-45 minutes. I loved seeing her enjoy herself.

During all this, an album of very relaxing music was playing. “Clair de lune” caught her attention. She stopped talking and said, “Listen.” For the balance of that piece and into the next, she closed her eyes and put her hands together as though she were praying. This is not the first time she has done this. I always find it touching. The day was off to a good start. It was a very “Happy Moment” for both of us.

We finally adjourned to the family room where she wanted to rest. I took that opportunity to take my morning walk (inside the house for those of you who are new to this blog). I hadn’t walked ten minutes before she was sitting up. Then we spent a short time looking at one of her photo books before getting a takeout meal for lunch.

The sitter arrived just as we were finishing lunch. I got up from the table to get ready to leave, and the sitter took my place. It was a very natural transition. Kate was perfectly happy with Cindy as she has been since her first few visits . That makes me feel much better when Ieave.

When I returned, they were seated on the sofa looking at a photo book and having a grand time. Kate was sorry to see her go. Their relationship is everything I could have wanted and more.

The rest of the evening went well. We had a pleasant dinner with a takeout meal at home and encountered no challenges getting ready for bed. Kate had not rested at all during the day. That’s rare. As a result, she went to sleep rather quickly but awoke briefly when I got in bed. She was still happy, and so was I.

Posted on

Sundowning?

One of the common symptoms associated with Alzheimer’s and other dementias is sundowning or sundowner’s syndrome. Until this week, I haven’t noticed this with Kate. The classic signs usually involve confusion and anxiety that occurs around sunset or early evening. She’s experienced a lot of confusion and some anxiety, but it has not been typically associated with the evening. In fact, afternoons and evenings have been the most predictably good parts of her day.

Kate’s behavior the past two nights leads me to suspect sundowning might be entering our lives. Thursday she was awake earlier than usual, around 8:30 as I recall. We had enough time for her to have breakfast and rest an hour or so before going for lunch around 11:30.

The balance of the day went well. She rested some, and we looked through one of her photo books. We had an early and pleasant dinner at Casa Bella. The pleasantry evaporated when we pulled into the garage at home. When I opened her door, she looked frightened and refused to get out of the car. She told me to get in.

I complied, and we chatted for a few minutes. She thought there were people in our house and wanted to avoid seeing them. I mentioned that it was our house, and we hadn’t invited anyone. We chatted a few minutes. Then she said, “Well, what do you want to do?” I said, “I think we should go inside and get ready for bed.” She said, “Okay,” and we went inside.

Everything was fine until near the time that I got in bed. She was frightened again and mentioned something about “them.” That is not unique. She frequently believes there are others in the house or on the way. I went in another direction and said, “Why don’t I come to bed now. I’d like to read something to you.” I got The Velveteen Rabbit and hopped into bed with her.

I’ve been reading the book to her for several months now, and she has never given me any sign that she recognizes it or has ever read it before. Her immediate response varies. Sometimes she is reluctant to go along with my suggestion that we read it. Other times, she seems to like the idea. In those cases, I get the feeling she just wants the comfort of our engaging in an activity together. That’s the way it was that night.

She didn’t make her normal audible responses to specific passages that catch her attention, but she did begin to relax. By the time we reached the end of the book, she was at ease. I thanked her for letting me read to her and told her I loved her. She said, “Me, too.” I turned out the light, and we were off to sleep.

Yesterday, she was wide awake when I got out of bed. She said wanted to get up. I suggested that she let me get up first and dress and then help her. She agreed. I thought she would be asleep by that time, but she surprised me. I got her up at 6:50, and fixed her breakfast. We had a good time. She was talkative and always enjoys her cheese toast. When she finished, she wanted more and enjoyed it just as much.

After breakfast, we went to the family room and looked at one of her family photo books until she wanted to rest. That was about 9:00. I had a Zoom meeting with my Men’s Coffee Club at 9:30. We were through at 11:00. I thought that would give us plenty of time to have lunch before I had another Zoom meeting with a United Way committee.

That idea went by the wayside when I discovered that Kate had gotten up from her rest just before I finished with my men’s group. She was looking around the house. When I mentioned lunch, she wasn’t interested. I decided to have lunch delivered. Before it arrived, she was resting again. Time was also running close to my noon meeting. I decided to eat after the meeting.

That turned out to be a good idea. Kate was ready to eat when the meeting ended. We were about to sit down when Mary, our Friday sitter, arrived. She had picked up a lunch for herself, and the three of us ate together. I have found that my departure is much smoother when I don’t have to leave immediately after the sitter gets here. That worked especially well yesterday. Kate was talkative, but it was difficult to understand what she was saying. When I returned, they were having a good time looking at one of Kate’s photo books. Mary said they had talked and looked at books the whole time I was gone.

We picked up a takeout meal for dinner. Before leaving, Kate wanted to go home. I told her we could pick up our dinner and take it home to eat. We enjoyed our meal, and I thought we would be off to the bedroom to get ready for the night. Kate had other ideas. She wanted me to take her to her home, not mine. On the way home, she repeated that she wanted me to take her to “her” home. I felt the need to prepare her that it was my home. I told her it was late and that it was best that she stay at my home and that I could take her to her home “in the morning.” She said the clothes she would need that night were at her home. I told her I had clothes for her. She said, “Well, I’d better call my mother.” A moment later, she said, “She’s not going to like this.” I assured her it would be all right. She was hesitant, but she agreed.

Once inside, she was still uneasy, but she let me help her in the bathroom and getting dressed. I put on some music that I thought she would like and helped her into bed. Then I took my shower. When I got out, I think she was asleep. I know that she didn’t say anything until I got in bed. Then it was just a soft chuckle. She sometimes does this to acknowledge that she is awake. On the other hand, it could have been that she was having a dream.

Was this a case of sundowning? I don’t know. She does seem to have had more delusions in the past few days. I have another thought. Following the guidance of Kate’s doctor, I have gradually eliminated her Aricept  (donepezil). She took the last tablet on Tuesday. Is this a symptom of withdrawal? Again, I don’t know. It could be that the experiences of the past two nights are not sundowning or signs of withdrawal. It could also be just another stage in the progression of her Alzheimer’s.

No matter how much a caregiver knows, one never knows it all. But that doesn’t keep us from trying. I think I’ll go back to her Aricept  tonight and follow the same withdrawal schedule we have for the past two weeks.

Posted on

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.

Posted on

The Rest of the Day

I am still not ready to conclude that our Covid-19 pandemic is totally responsible, but Kate is clearly going through changes. As I reported yesterday, some of the changes are quite positive. She is definitely more childlike, and that is accompanied by pleasurable experiences for both of us. That is what happened yesterday morning. She was cheerful and enjoying everything to a greater extent than normal. Were I a better writer, I would have been able to more effectively convey that experience as we went through her photo books and then our old photos around the time of the birth of our first child. Both of us had a great time together.

The good news is that it didn’t end there. After her second rest of the morning, she was alert and happy. It was a little early for lunch, so I suggested that we read The Velveteen Rabbit. I wish I could give you an adequate description of her enthusiasm. She responded audibly throughout the entire book. The surprising thing to me was that her responses, although stronger than one might expect for an adult, seemed to be appropriately matched with the story. I believe she was getting the message in her own way.

The rest of the day went well although it was not nearly as uplifting as the first part. For the first time in six weeks, we got haircuts. On days when she gets color, she goes first. Then while the color sets, the stylist takes care of my shampoo and cut. Ordinarily, Kate works jigsaw puzzles on her iPad. Because she has given up her iPad in the past few weeks, I didn’t take it with us. Instead, I took one of her family photo books to look through while the stylist was taking care of me. When she finished, we both walked over to Kate’s chair. She was holding a towel in her hand and using it like a pen to write a note to someone. She didn’t want to stop to get up and have her hair rinsed. She was confused as to how to say what she wanted in her note. She asked me to help her. I picked up the towel and used it and read aloud what I was “writing.” She was pleased.

I had taken a seat a few feet away from the two of them but separated by a partition that was about 4 ½ feet high. Kate was getting along quite well with the stylist, but quite a few times she asked where I was. Each time the stylist told her, she immediately forgot and, moments later, asked again. Kate and I both wore gloves, and I wore a mask. Kate also repeatedly asked the stylist if she could take off her gloves. I was impressed with this because she had automatically taken them off at the restaurant on Sunday. I wonder if she retained some awareness that she was supposed to keep them on. I suspect it was really because she is so unsure of things that she asks about almost everything.

The day had gone very well until I took my shower. I left Kate in bed watching YouTube videos. As I got out of the shower, she opened the bathroom door. She was obviously confused. I asked what she wanted. She said she didn’t know. I told her to give me a few minutes, and I would help her. She started to leave the bedroom. I asked her to stay so that I could help her. She repeatedly asked me what she could do. I told her she could get back in bed and listen to the music on the TV and that I would be right there.

When I was finished, she was in bed but still confused. Typically, I would sit in a chair on my side of the bed and read or work on my laptop before joining her. I decided it would be better to put on a DVD of Les Miserables and get in bed with her. I thought watching together might divert her attention from her confusion. In the long run, it did. She didn’t show any signs of being disturbed, but she didn’t watch. I’m not sure how much she listened.

I turned it off less than an hour later and put on some very soft music on our audio system. I snuggled close to her and told her I loved her. She didn’t say anything, but she did put her arm across my chest. In a few minutes, she asked my name. I told her. She seemed perfectly at ease. It wasn’t long before we were asleep.

Posted on

Follow-up on Kate’s Sleeping

When I posted my previous update concerning Kate’s sleeping, it was 9:30. She was still asleep. I didn’t make any effort to get her up before 11:00. She was awake and pleased to see me. Her response was strange in that she started to cry. I asked if she could tell me why. She couldn’t, but she was able to tell me she was happy. That made me wonder if she had been awake for a while and didn’t know where I was or what to do.

She wasn’t eager to get up, but she did so willingly. She was very unsteady on her feet and very confused. We got a takeout lunch that we brought back to the house. Her confusion continued while we were eating. She couldn’t identify her hamburger patty, the bun, or the fries. She ate a good bit of the bun, but I think she would have left the patty if I hadn’t put pieces on her fork and fed them to her. The surprise to me (a pleasant one) was that she ate hardly any fries.

When we finished, we spent about thirty minutes looking at one of her family photo books. Then I turned on Phantom of the Opera on YouTube. I was doubtful that she would be interested since it wasn’t just a concert of the music but the full stage production. I was right. I turned it off after fifteen minutes.

She was tired and rested on the sofa for an hour before sitting up. She was confused and said, “Where am I?” I told her she was at home. She said she wanted to “get outa here.” I told her I would take her but wanted to show her a couple of things first. I took her into the hallway to see her pictures of her Grandmother, mother, and her father. She didn’t express her usual interest. She kept saying she wanted to go.

I took her by the hand and walked toward the garage where I intended take a short drive in the car and return home. Before getting to the garage, she changed her mind and wanted to stay. We went back to the family room. She said she was hungry. I got her some blueberries and cheese for a snack. She ate them and has been resting for about forty-five minutes. It is 5:15. We have plenty of lasagna left over from last night. I think I’ll serve that instead of bringing something in. We’ll both enjoy it.

Posted on

Life is Different for Us Now, and It’s More Than Covid-19

It is Thursday, three days since my previous post. Some of my readers have let me know they wonder if something is wrong when I miss a day or two. I usually say that I have been busy and that we haven’t experienced any significant problems. That answer doesn’t fit this time.

I have been busy, but a good bit of that has involved problem-solving with Kate. She hasn’t been her normal self. It seems to be an escalation of the problems surrounding her sleeping late. It’s not just the sleeping that is the problem. She has been more confused. She frequently thinks she is not in her own house. Now, however, it seems that she typically believes she is somewhere else. I don’t believe there was a time yesterday when she realized she was at home.

It’s not just home that she doesn’t recognize. She is also having more trouble recognizing me as her husband. It’s ironic that she is simultaneously remembering my name more than she has in a long time. That provides me with a certain amount of comfort although she frequently asks, “Where is my husband?” or says, “I wish Frank were here.” That was especially true yesterday. Before I tell you about that, I need to follow up on our very busy day Sunday. It will be easy to summarize.

You will recall that she was up early on Sunday and very active. She wasn’t agitated, but she was awake all but a very brief time during the entire day. She slept well that night and was wiped out the next day. I made an effort to get her up for lunch before the sitter came. That was a lost cause. I decided to let her sleep/rest as long she wanted. I finally got her up for dinner at 5:45.

She didn’t want to come to the table. I set up a card table and folding chairs in the bedroom, and we ate our dinner. She was still tired after dinner and wanted to go to bed. She slept well. When she woke up on Tuesday, she was back to normal. We had a good day. That brings us to yesterday.

Kate got up about 6:45. I don’t recall her ever getting up so early in years except for a bathroom break. I was in the kitchen when I looked at the video cam. She was starting to make up the bed. When I went to her, I found that she seemed wide awake. I offered to take her to the bathroom. She didn’t want to go. She also didn’t want to get dressed. She wasn’t irritated with me. She just didn’t want to do these things. She was somewhat like she had been on Sunday. She felt there were things she needed to do.

I had taken my plate of scrambled eggs with me to the bedroom. She saw them and said, “That looks good.”  I told her I could make some for her. She liked the idea, and we went to the kitchen.

Throughout the entire day, she kept “losing” me. In most instances, I was very near her at the time. She just didn’t see or recognize me. This first occurred as I walked ahead of her from the bedroom to the kitchen, she lost me a couple of times and asked where I was. She didn’t seem terribly upset, but she was relieved when she saw me. This continued at the table while I was getting her breakfast of apple juice, strawberries, grapes, and scrambled eggs. She ate every bite. I was pleased because she hasn’t wanted eggs in a long time. I’m glad to have a more nutritious option for blueberry muffins.

It was also a day when she didn’t recognize me as her husband nor that she was in our home. She was especially surprised when I started to load the dishwasher. She acted like I was her guest and said she would do it later.

Several times she said, “Where is your brother?” I told her Birmingham. She said, “Why is he there?” One time she said, “When is he coming?” This surprised me as she hasn’t said anything about my brother in a long time. I can’t imagine what prompted her to remember him.

After breakfast, she was tired and wanted to rest. I suggested she get dressed first and then rest in the family room. She accepted my suggestion and slept almost an hour, much less time that I expected given that she was up so early. Since I had missed my morning walk, I took advantage of the time and took it then (inside the house, of course).

The next surprise was that she started to get up after she was awake. Normally, she would continue to rest and only get up when I suggest that we do something together. I asked her where she was going. She said she didn’t know. That’s when I suggested that I come over to the sofa and look at one of her photo books with her. She agreed.

I picked up a photo book and sat with her. She didn’t know who I was and asked my name. I told her, and she wanted to know our relationship. I told her I was her husband. This was a time when I shouldn’t have been honest. She was bothered by not knowing. I told her I didn’t mean to upset her. She said she wanted me to be honest. She went on to say she was not herself. I told her I recognized that. She wanted to know why she was this way. She said, “It’s not just my memory. I don’t know how to do things.” I said, “That must be scary.” She said, “It is.’

She wasn’t as interested in going through the photos as she usually is. That led me to go in a different direction. I started to give her a tour of the living and dining rooms. We passed by a photo of our twin grandchildren. She enjoyed seeing them. Then I showed her a pitcher with a note from her mother that said it had been a gift from her father to his mother and that she had kept in her living room many years and was to go to Kate who could pass it along to our daughter Jesse. Kate was moved by this. From there we went to the living room. I showed her a cabinet with eighteen porcelain dolls. Her father had given them to her mother for anniversaries, birthdays, and other special occasions. At this point, she got very emotional and indicated this was too much for her. I suggested we eat lunch. I fixed her a grilled ham and cheese sandwich and a salad with chicken for me. She sat at the table while I prepared the meal. Several times, she said, “Where is he?” Each time, I walked to her and said, “I am right here. I wouldn’t leave you.” She was very relieved each time.

After lunch, we went back to the family room to look at photo books again. That’s what we were doing when the sitter arrived. Kate was still confused. I decided not to abruptly  get up and leave. Mary had brought her lunch and ate it in the kitchen while we continued to look at family pictures. When Mary finished, she came back to the family room and took a chair across the room. Finally, I told Kate I thought I would take a walk around the neighborhood and asked if that would be all right. She said that would be fine, and I slipped out.

I was gone forty minutes. I expected to see Kate asleep on the sofa. Instead, she was still looking at her photo book. That is very unusual. She always likes to nap after lunch. In addition, I don’t remember a time when she spent that long looking at photo books by herself. It makes me think that she was trying to find something that would jog her memory.

More importantly, she was more confused than when I left. She looked at me with a flash of recognition but was puzzled. I think she recognized me as someone she knows but not as her husband. I sat down with her and went through the book giving her information about the people she in the book. Several times she asked my name and relationship. I told her, but she didn’t express any great emotion.

I could tell rather quickly that she needed something to divert her and thought of her father’s family movies that had been transferred to DVDs. I mentioned them to her, and she was interested. We went back to the bedroom where I put in one of the DVDs. The part we watched was shot around the mid-to-late 1930s, so the quality of the film is poor. The sound that accompanies them was made by Kate’s father, mother, and two cousins as they watched the films we watched. That helped us identify most of the people. That is especially important for the children we have only known as adults. Kate was immediately taken by what she saw. We watched for an hour before ordering a takeout meal for dinner.

During the film, Kate periodically said, “Where is my husband?” Each time I said, “I am right here.” She experienced immediate relief and then asked the same question again. It was a bit frustrating for both of us, she because she didn’t know where I was and didn’t recognize me as her husband, I because no matter what I said I could give her only momentary comfort.

We went through this same routine at dinner. After we finished, she was tired and ready for bed. She was still awake when I joined her two hours later. She didn’t ask about her husband, but I could tell by the way she responded to me that she didn’t believe I was he.

Posted on

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.

Posted on

Another Successful Experience with Music

The first time I looked to music for therapeutic purposes with Kate was over eight years ago. We were getting ready to attend a concert by the Knoxville Symphony. Kate was very slow getting dressed. I reminded her several times that we needed to leave right away. This was not long after her diagnosis, and I hadn’t learned how important it is not to rush her. She had a panic attack. That meant I had to calm her. That helped, but she was still experiencing the attack when we got to the car. The first thing I did was put on the second movement of Brahms’ Violin Concerto. It’s a very peaceful movement, and I hoped that might calm her. It worked. After that, I developed a short playlist of the second movements of violin concertos of Brahms, Mendelssohn, and Tchaikovsky. We never had another severe panic attack, but she did have milder ones.

That playlist came in handy, and it motivated me to select a broad range of music to play in the car wherever we went. I still play music anytime we are in the car, and I’m careful to select music she especially likes. From there I expanded music at home. Now I rely on it all the time, and I am always discovering new applications. One of those occurred yesterday.

The recent Covid-19 pandemic is affecting everyone. I had been to the grocery store to get a few things in case we weren’t able to eat out. I returned home an hour after the sitter arrived. Although I knew I might run into trouble, I came back just to unload the groceries, some of which needed to be refrigerated or frozen.

As I walked into the kitchen, I saw that Kate was lying on the sofa with her eyes open. I felt I couldn’t leave without speaking to her. I sat down beside her and saw that she was disturbed. I asked what was wrong. She said, “I don’t know. I’m just not myself.” I talked to her very calmly for a few minutes but could tell this was going to take more time.

I told the sitter she could go and turned on “Send in the Clowns” sung by Barbra Streisand. This song has long been one of Kate’s favorites. It is usually very soothing. Not this time. It is a sad song, and, for the first time, she felt the sadness as opposed to the song’s beauty. I knew she needed something much lighter and thought of “A Bushel and a Peck” by Doris Day. I sometimes use this when I am trying to get her up in the morning. She recognized the song very quickly, and the two of us sang it together. She became more cheerful. We, accompanied by Doris, sang it two more times.

This had been successful but had only taken a few minutes. She and I sing together, at least for brief periods, periodically, but it is usually in the car. I decided it might be good if we sang more and streamed a 3-disc album of 100 children’s songs. We started with “The Alphabet Song.” Then we moved to the “Eensy, Weensy Spider.” For the next hour we sang songs we hadn’t heard since our own children were young, some not since we we were children ourselves. They included songs like “Polly-Wolly-Doodle,” “If You’re Happy,” “ The Bear Went Over the Mountain,” “Bingo,” “This Old Man,” “Mary Had a Little Lamb,” “Old McDonald,” “Do Lord,” “She’ll Be Comin’ ‘Round the Mountain,” and many others. We must have sung 30-40 of the 100 and had a great time.

Music is powerful. It has saved us many times, and is always a source of great pleasure.