Ending 2021 on a High Note

Change has become a normal part of our lives since Kate’s diagnosis in 2011. It’s difficult to predict how Kate will feel each day. Fortunately, she has an abundance of good and very good days, and on most days, more highs than lows.  Alzheimer’s, however, brings with it a host of challenges. The past 12-14 months have been among the most difficult ones of our marriage. Despite that, with only one day remaining before the new year begins, I can honestly say that I’ve never felt more upbeat than I do right now. And it all relates to Kate.

The biggest changes we faced this year really began just before Thanksgiving 2020 when Kate and I tested positive for COVID. Prior to that, she had been declining and showed the first signs of losing her mobility. I believe Covid pushed that ahead at least six months if not a little longer.

The experience was traumatic for her. She was in the hospital for eight days and bedridden for seven weeks after returning home. That meant everything we had to do for her had to be done while she was in bed. She didn’t like that and was verbally and physically combative whenever we had to move her.

We needed additional in-home care. For three years, we had in-home care four hours a day three days a week. We were fortunate to have had only two or three different caregivers during most of that time. When Kate got home from the hospital, we increased the care to 7-8 hours a day seven days a week. That involved more than ten different caregivers. That meant we didn’t have the kind of consistency I would have liked.

On top of that, we were scheduled to move to our retirement community in April. There was a lot to do in getting our house on the market and downsizing to a two-bedroom apartment. It’s a testimony to how easy my life has been that this was the most stressful period of my life.

Although our house sold quickly, and I was happy that we made the move, all of my normal routines were radically disrupted. That itself added a bit of stress. Fortunately, I began to develop new routines and to appreciate the various services that a community like ours offers. Life has certainly been easier here. It is also a very supportive community with an excellent staff that works to make the residents happy.

With the move, came a change in our caregivers. Now, we have one caregiver who is with us ten out of every fourteen days. She takes off every other weekend. Our only problem has been finding a person to fill in for her that weekend. We have another caregiver who comes every Friday. She’s been with us for more than four years. Unfortunately, I received word a few days ago that she is retiring and won’t be with us after today. On the whole, however, we have more consistency among our caregivers now than we have had in over a year. That’s been a good thing.

The best news I have about this year is Kate’s adjustment to her COVID experience and our move. At the time of our move, we were getting her out of bed a few days each week. That improved several weeks after the move, but she was still combative though less so than in the past. In another few weeks, we were getting her up every day.

That was followed by getting her out of the apartment a few times each week. We were out for a limited time and just strolled through the hallways and back home. Several times when the weather was ideal, we walked through the park that is on the grounds across the street from our building.

There are quite a few areas in our apartment and in the hallways of our buildings where we go from the floor to a carpeted area. Kate was frightened by the slightest bumps when we crossed them. As she began to feel more comfortable, we began to visit one of our cafes for ice cream in the afternoon. That is now almost a daily activity for us.

For a long time, I relied on carryout from the dining room for our evening meal. Then two or three months ago, we started eating in the dining room. That and our afternoon ice cream stop have become a very pleasant part of our day.

The best change by far has come in the past couple of months. Kate seems considerably more at ease than she has been since COVID a year ago. She is much more cooperative when we change her, dress her, and get her in and out of bed, her recliner, or her wheelchair.

She has also begun to respond to other residents when they speak to her. A few days ago as we were leaving the dining room, we saw four other residents. As we passed their table, Kate said, “How are you guys tonight?” Then she added, “What’s so funny over there?” Another night, the director of food services stopped at our table. He said, “How are you Mrs. Creighton?” Kate said, “I’m fine, but who are you?” On another occasion, one of the food service staff came to our table. She spoke to Kate a few minutes. When she said she was leaving for the night, Kate was sad and said, “I love you.”

Like so many other changes, I’ve tried to discover the cause. That’s always difficult. Most of the time I’m not sure. When I first noticed the change in her comfort level, I considered two possibilities. One is that it arises out of unknown changes that take place in her brain on a daily basis. For example, she can be at ease one moment and the next moment experiences a delusion that disturbs her.

The other possibility is that she has simply gotten used to life the way it is now. We have more consistency with our caregivers, and we follow a regular daily routine. As I suggested above, we started making gradual changes when she came home from the hospital. Although she’s never shown any sign that she recognizes we are living in a different home, the move was accompanied by significant changes. We continued to introduce her to new things and have now established a routine with which she has grown accustomed. At least, that’s what I believe, and for the moment, I’m sticking to it.

Apart from that, music continues to be very important to us, and our relationship is very strong. That doesn’t mean she always remembers my name and that I am her husband. It means that 90% of the time she recognizes me as someone familiar to her and someone she likes and trusts. Our relationship has never been stronger.

For all of these things, I am grateful and “feeling good” as we move to 2022.

Happy New Year to All.

A Late, but Welcomed, Christmas Present from Kate

It’s no secret to those who know me that music has been of great importance to Kate and me while “Living with Alzheimer’s.” As always, we have loved enjoyed Christmas music throughout the holidays.

Last night after dinner, I decided it was time to play some of our non-seasonal favorites. What followed was almost a full hour during which Kate was almost mesmerized by the music. In no time, she was smiling, mouthing the words, and moving her head and hands in time with the music. She was much more animated than she has ever been in the past. We only stopped because it was time to get her ready for bed before the caregiver left.

Her caregiver and I were amazed, and I was enjoying it so much that I didn’t think about taking a video. Fortunately, the caregiver motioned me to do just that. I took a number of videos that will be a precious memory of these moments.

After the caregiver left, there was a bonus. We continued to enjoy music and conversation in bed. We’ve had a “Very Merry Christmas.”

Kate and the Joy of the Holiday Season

As I write this morning, Christmas is less than two weeks away, and I am feeling joyful.

It’s been years since Kate and I have bought presents for each other, but we always celebrate the holiday and our love for each other. Although our decorations are up, and we’re playing lots of Christmas music, she doesn’t recognize that Christmas is near and certainly can’t think about presents; however, she has already given me several. They’re not the material kind; however, like the MasterCard commercial, they are “priceless.”

I mentioned the first of those in my previous post. For the first time in just over two years, we had dinner together alone (without a caregiver) in the main dining room of our retirement community. Kate was cheerful and talkative. It was a very special moment for both of us. That was a week ago this past Sunday night. Since then, she’s given me two other equally priceless moments. Let me tell you about them with a brief preface for each.

This last stage of Kate’s Alzheimer’s is the most challenging for us. Kate experiences more delusions that disturb her than she did in earlier stages. I also find that some of the things that I depended on to help me in the past no longer work or work as well as they once did. Her family photobooks are a good example. Another is my reading to her. There was a time when she loved The Velveteen Rabbit, and I loved reading it to her. Her interest in the book has dwindled over the past year, but she surprised me a few nights ago.

We were in bed with the TV tuned to an NFL game (for me) with the sound muted and Christmas music playing on my audio system (for both of us). We were holding hands and talking when she said, “What can I do?” (She says something like this occasionally, and I don’t have trouble understanding why. She is now in what home health providers refer to as “Total Care.” That means a caregiver must take care of all her needs. She can’t do anything on her own. Although she can’t remember names, places, events, or how to do things, her senses are alive. She sees people around her who are doing things. It must be very discouraging not to be able to do anything for herself.)

I suggested a couple of things, and she said something about reading. I asked if she would like me to read something to her. She indicated she would, and I pulled out The Velveteen Rabbit from the top drawer of the bedside table.

She didn’t remember the book, and I told her it was one that we had both enjoyed in the past. I’ve read it to her many times but have always recognized that she can’t grasp the plot and can’t understand many of the specific things that occur. To counter those obstacles, I read it in a very animated way to capture the feelings conveyed by the text.

I caught her at a perfect time. From the very beginning, she was engaged. It’s always been a favorite of hers, but she has never responded more enthusiastically. She responded audibly to at least one part of every page. I wish that I had recorded it. When I came to the end, I said what I always say, “Thank you for letting me read this. I love this story.” She said, “Me, too. I’ve got tears in my eyes.” I said, “I do too,” and I did.

The next gift came over the weekend. A number of our church friends live in our retirement community. We often see one of those, a 93-year-old ”live wire,” who buzzes around the hallways on her motorized wheelchair. Soon after we moved in, she told us she wanted to come to our apartment to read a Christmas story to Kate in December. She has reminded us of that many times over the preceding months. Late Friday afternoon, she sent me a text message asking if she could come by Saturday afternoon. That was a good time for us, and I accepted her offer. I thought about warning our friend that I couldn’t predict how Kate would respond but decided against it. As it turned out, Kate rose to the occasion.

So did our friend who wore a brightly decorated Christmas vest and a small Christmas tree atop the cap on her head along with a script of The Night Before Christmas. She pulled up a chair directly in front of and very close to Kate who was in her wheelchair. Then she read the story in a very dramatic way. Kate kept her eyes closed, but she was very attentive and the expressions on her face let us know that she was enjoying all of it.

When she finished reading, our friend suggested we sing something, so we sang “Deck the Halls” and “Silent Night.” Kate joined in softly. At the end of the last verse, our friend and I had tears of joy in our eyes. Kate didn’t, but she did applaud. It was another beautiful moment.

So, although this could be a depressing time in a joyful season, Kate herself is a “gift that keeps on giving.” That says a lot about someone at this stage of Alzheimer’s, and explains why I’m feeling joyful.

Sometimes What Looks Like a Bad Day (or weekend) Turns Out to Be a Winner.

As I hope my previous posts have conveyed, Kate and I have lived well with Alzheimer’s. Regular readers will also recognize that I do mention some of the challenges we face. Many of my posts describe a combination of our ups and downs. This post is one of those.

A month ago, we lost a caregiver who comes every other weekend from noon until 7:00. The agency sent a new person on Saturday two weeks ago, but she was with us only one day. The agency couldn’t find a replacement for her on Sunday but were able to get a “floater” who works on the grounds to help me get Kate up and ready for the day and another one to help me get her to bed. That meant I didn’t go out to lunch that day. The upside was my being able to take Kate for ice cream by myself. This was only the second time I have done that without a caregiver. It’s nice to have alone time with her.

Between then and this past weekend, the agency found a replacement who was prepared to work with us every other weekend. Her first day was this past Saturday. It got off to a rocky start. Like most of the other caregivers, she has another job, full-time on the night shift of a skilled nursing facility. Not surprisingly, she was tired when she got home that morning and lay down to rest. Unfortunately for us, she didn’t wake up in time to be at our place at noon. She was an hour and a half late.

She’s an experienced CNA (certified nursing assistant) and handled the basic tasks quite well. She only needed a little more experience with Kate’s situation. Like others, she didn’t show much interest in Kate herself, just the basic tasks of changing her, dressing her, etc. I did tell her that one of the things I wanted her to do was to bond with Kate and that I understood that would take some time. I also mentioned that Kate is sensitive to being ignored and sometimes expresses that when I get in a conversation with another person while I am with her. Despite this, I don’t recall her ever trying to communicate with Kate apart from the moments when she told Kate what she was about to do for her, something all CNAs learn as part of their basic skills.

When she left that night, she said she would see me the next day. Early the next morning, I received a call from the agency letting me know that she could not come and that they were looking for a replacement. They weren’t successful, so the person who called came over to help me get Kate up.

Once again, I had to skip going out to lunch. I know that seems like a little thing, but it’s a significant part of my selfcare. I go to the same restaurant Kate and I went to every Sunday for over five years. I know most of the personnel and some of the other customers who are also regulars. It’s a relaxing getaway for me.

On the other hand, it gave me an opportunity to spend more time with Kate. I looked forward to our going out for ice cream together as we had done two weeks before. Unfortunately, Kate experienced a delusion that troubled her and didn’t want to go out. I tried several times, but she refused to leave. Shortly after 3:30, I resorted to my old standby, music, to see if I could change her mood. Recently, I’ve found “Edelweiss” helpful in getting her attention and calming her. I tried once again.

We were seated side-by-side, and I leaned over and started singing. After going through it a couple of times, I played it about six or seven times on my audio system. It worked like a miracle. She was cheerful and had forgotten whatever was worrying her. More importantly, she was cheerful the rest of the day and evening. That’s not even the best part. Since our caregiver didn’t show, I was able to take her to dinner by myself. That was the first time we had been to dinner without a caregiver.  Kate was talkative. We actually engaged in conversation that had some of the elements of a normal one. She seemed to process my questions and asked me questions as well. Anyone watching from a distance would have thought we were just another married couple having a pleasant dinner and conversation.

Of course, her aphasia prevented my understanding everything she said. I am also sure that anyone who might have overheard us, would have wondered if I had any idea what Kate was talking about. For me, it was one of the most enjoyable “Happy Moments” we’ve had in a long time. The last time we had eaten together outside the apartment or our home was before Thanksgiving two years ago. So, what looked like, and could have been, a bad weekend turned out to be something special. It was an early Christmas present.

Feeling Thankful

This Thanksgiving I feel grateful for many things, but at the top of the list are all the special moments that Kate and I continue to share. That doesn’t mean everything is the way I would like. Kate’s day of obsessive talking last week was an unwelcomed disruption in a string of three good weeks. As noted in other posts, times like that makes me wonder if we are in for more of the same in the future. I won’t have an answer to that for a while, but I am thankful that each day since has been much better. I am particularly happy that our evenings after the caregiver is gone are almost always special.

What makes them special is that Kate is more relaxed. In fact, we’re both more relaxed. Most people who have had an opportunity to be with her in the last year or so would have difficulty imagining how natural she sounds. Only her delusions and aphasia prevent my understanding everything that she says. Apart from that, our conversations are like those we had before Alzheimer’s entered our lives.

I might even describe our evenings as romantic. It’s not like we were newlyweds, but we’re able to express our love for each other in a way that is just as meaningful. Touch has become much more important to Kate at this stage of her Alzheimer’s. She often reaches for my hand and runs her fingers up and down between my fingers. She also likes to run her fingers over the palm of my hand and along my forearm. Evenings like this are even more special at the end of a day when we have experienced more troublesome moments.

But it’s not just our evenings that are special. During any given day there are bright spots. One of those occurred last night after we returned from dinner. We had almost an hour and a half before the caregiver was to leave. Normally, we might sit out on the balcony for a while, but it was a little too chilly for us. We stayed inside, and we had just put up our Christmas decorations. I decided we needed some Christmas music and played a large portion of Handel’s Messiah. It holds a special place in our lives. Sixty-years ago next month, we went to a performance of it on our first date.

Kate was in a good mood and talkative but not obsessively so. As the music played in the background, Kate and I talked for almost an hour. Although what she said was filled with delusions, she asked me questions and answered my questions. Like some other conversations we have, they involved something that Kate was planning and wanted my help making decisions. We both expressed our opinions. Through it all, she was very calm, never agitated. She just wanted to be careful about what she was planning and wanted my thoughts.

I suspect this doesn’t seem special to most people, but to me it was. The difference, of course, is that I see it in a context that is different from those who are not living with Alzheimer’s. One of the things that those of us caring for spouses miss the most is conversations with our loved ones; therefore, I treasure them whenever they occur. Such moments don’t happen every day, but I am grateful that they are far from rare.

There is no denying that Kate is able to do far less now than at any time since her diagnosis almost eleven years ago. She lives in a world that is much smaller now, but I am grateful that she can still enjoy life and am optimistic that we will continue to enjoy life and each other for some time to come.

Wishing you and yours a Happy Thanksgiving.

Ups and Downs While Living with Alzheimer’s

My last post was upbeat, and for very good reasons. Kate had had a string of very good days. I should be clear that her Alzheimer’s has not improved. Her memory is no better than it was. Nor is her aphasia. She still experiences delusions that sometimes cause her to be afraid or annoyed, and sometimes she has periods when she does not recognize me at all.

The big change was in the comfort she feels when we go about our daily routine. That includes getting her dressed and out of bed each day as well as the reverse process that occurs every evening. She is no longer physically or verbally combative with her caregivers and me during these moments. She is also less vocal when we take her across minor bumps in the hallways when we go for ice cream and dinner.

Overall, she’s been happier, and less afraid of everything that has bothered her in the past. The good times continued until two days ago. It may have started the afternoon before when she had an unusually grouchy spell and yelled at the caregiver and me. We got through that and dinner without any serious problems, but she was not as cheerful with friends we met during this time.

I wasn’t sure what we might be in for that night. Fortunately, she began to calm down as we got her ready for bed. It turned out we had a very good night. I think she was worn out.

The next day, she was awake around 9:00. It was one of those times when she didn’t recognize me at all. She was also obsessively talkative. As in the past, what she said was rooted in delusions and hallucinations. I thought it would help if I got in bed beside her and tried to comfort her. She wanted me to leave.

I left for a short time. When I returned, I turned on some music that I hoped would be soothing. I got in bed beside her with my laptop and began to check email. A few minutes later, she apparently recognized me because she reached out to take my hand. I was with her the rest of the morning. During that time, she talked continuously, often pointing to places in the room for me to see people or things that were not there.

I was with her when the caregiver arrived shortly after noon. I briefed her on the situation and went downstairs for lunch. When I returned, the caregiver had fed her and put her in her recliner. She was still talking. I tried to calm her for about thirty minutes before she had a doctor’s appointment at 2:00. She relaxed somewhat, but she didn’t stop talking.

When the doctor and his nurse arrived, I answered the door and stepped outside to explain what was going on and that Kate was very different than she had been for their previous appointments. Then we went inside where we went through the regular routine as well as we could while she talked. She never responded to them verbally.

The doctor asked if I had given her a sedative (Seroquel). I told him I hadn’t but would have if it were bedtime. I indicated my preference was to make an effort to relax her and play music that I know she likes. I thought, however, that it would be a night for the sedative.

After they left, I spent almost an hour on my knees beside her in the recliner. I listened to her and responded to her in a very calm manner. She became somewhat more relaxed but was far from normal.

The caregiver gave her an afternoon snack. She stop talking for a while but started again when she was finished. She was somewhat more relaxed. I experimented with a variety of music including “Bushel and a Peck” and “If You’re Happy and You Know It.” She continued to relax, and I asked if she would like some ice cream. She said she would, and we prepared to leave. As we went down the hall to the elevator, she became agitated. We returned to the apartment. I also chose to eat in the apartment rather than go to the dining room for dinner.

She calmed down for dinner. After that we still had time to sit on the balcony for a while before the caregiver left, but I thought it was better to get her into bed. That turned out to be a good idea. She was worn out and soon went to sleep.

She slept for about an hour while I watched the evening news. When she woke up, we watched two symphonies on YouTube. She was at ease the entire time. We talked very little, but it was clear that she was all right. It was a happy ending to a trying day.

Yesterday, she was very tired. We didn’t get ice cream, but she was alert for dinner. When we returned to the apartment, she went right to sleep and is still sleeping. We had a very good run for three weeks. I’m grateful for that and suspect we won’t have a repeat. I am, however, confident that we will have many more special moments in the days ahead.

Some Days are Better Than Others, and Some are Very Special.

I’ve commented many times about Kate and her variations in mood and behavior. Many other caregivers report the same thing with their own loved ones. I’ve also heard stories about people who have been unresponsive for an extended time and suddenly experience a moment when they are more alert and talkative. Some families describe it as a miracle. Earlier this week, we experienced a moment like that.

First, let me provide a little background. Although I’m pretty good at accepting Kate’s unpredictability, I do get a little stressed when I make a commitment but am unsure how her mood might affect my plans.

Two weeks ago, our retirement community announced they are conducting video interviews with residents who would like to participate. The idea is to provide the residents and their families with a record of relevant aspects of their lives. Although they provide a list of questions the interviewer might ask, the format is not rigid. The residents or couples can modify or redesign the entire interview to suit their preferences. I liked the idea and was the first one to sign up. I created an interview focused on our marriage from our first date to the present under the title “Love, Discovery, and Adventure.” Our interview was Tuesday afternoon at 2:30.

Having set the appointment, I realized that I had also scheduled lunch at 12:45 to celebrate three anniversaries with my colleagues at the office. Two of them have been with me 40 years and the third 35.

In addition, the previous week I had been contacted by a nurse representing the insurance company that provides our long-term care insurance. Periodically, the company sends a nurse for an assessment interview to determine Kate’s eligibility for in-home care. She suggested three times last week, but I had conflicts for each one. She indicated that Saturday afternoon might be a possibility for her but would call me back. It turned out that didn’t work, and she suggested Tuesday at 10:30. I didn’t like the idea of having another commitment right before the other two, but I decided to accept it. That meant I was going to be distracted for all three of the day’s events. On top of that, I had no idea how Kate would do in the interview. Knowing that I needed to focus my attention on both commitments as well as my normal caregiving responsibilities, I felt a little stressed.

As so often happens, my concern was totally unnecessary. The appointment with the nurse went well. Sometimes the person assigned to make the visit tries to put Kate through the traditional dementia-related questions (Who is President? What is today’s date? Draw a clock showing that it is 2:00?) The past several visits I’ve requested the person not put her through this because she can’t do it and hasn’t been able to do so for years. This time the nurse said she felt it was unnecessary based on what I had told her about Kate.

Not long after the nurse left, our caregiver arrived, and I was off to our luncheon. That went quite well. Although we have worked together professionally more than thirty-five years, this was the first time for all of us to meet face-to-face since before the pandemic began in 2020. We had more to talk about than the time allowed.

Our video interview was icing on the cake. Kate was in a cheerful mood and more self-assured than usual. I told our interviewer that I would do most of the talking but would try to elicit some response from Kate. I won’t say she was talkative, but she was comfortable responding when I addressed her. In fact, she was the same way with the interviewer before and after the interview. Kate’s caregiver was in the room during the interview. She was as amazed as I. The entire process had been successful, and I am optimistic that the video will be something we can share with our children.

The rest of the day also went very well. We had a very pleasant dinner in the dining room, and we enjoyed our time together after the caregiver left.

It’s been a week, and Kate has had a streak of good days with special moments. I don’t have an explanation for these especially good times, but I will continue to savor them and be grateful.

Music or a Sedative?

Kate’s doctor prescribed a mild dose of Seroquel (25mg tablet) to control her combativeness after her release from the hospital last November. I used it twice and didn’t like the way it affected her. Since then, I used it once before a dentist’s appointment and another time before a podiatrist’s appointment. It wasn’t until two weeks ago that I used it again to get her to stop talking and go to sleep.

A few nights ago, Kate’s talking woke me up around 1:00 a.m. I’m not sure whether she was awake or talking in her sleep, but it was very much like the talking she exhibited over the past few weeks. She was talking in a loud voice to someone whose presence was an hallucination. At first, I tried to ignore it, but then I tried speaking to her softly and encouraged her to go back to sleep. That wasn’t successful.

My next thought was to try Seroquel. I felt sure that would work, but I try to avoid using it as often as I can. I decided to try music first. If that didn’t work, I could always resort to the sedative.

Since “Edelweiss” has worked before, I put my head on her shoulder and started singing it very softly. To my amazement, she stopped talking almost immediately. Then I hummed it. She was quiet, but I wanted to make sure she was soundly asleep. I reached for my phone on the end table and played “Edelweiss” on the audio system. I set it to repeat twenty times. She didn’t wake up until the next morning, and I was asleep long before the last note was played. Music rescued me once again.

Update on Kate’s Talkative Days

After several posts between September 30 and October 5, Kate’s talkative days settled back into what had been our previous normal routine. That changed again this week.

On Monday, she was awake about 6:45. That changed my morning routine, but it was well worth it. I can’t recall her having a better day. She was far from wide awake, but her smile conveyed a cheerfulness that was to last until she went to sleep that night. I took care of her morning meds, something to drink, and her morning snack before the caregiver arrived, and I left for Rotary. I spent most of the morning beside her in bed and enjoyed every minute. We talked and enjoyed music videos on YouTube.

When I returned from Rotary and the grocery store, she, Adrienne, and I went out for ice cream. Since it’s not as hot as it was during the summer, we sat on a deck outside overlooking a beautifully landscaped area and remained there until going to the dining room for an early dinner.

It was a day when Kate seemed almost “unflappable.” The only things that seemed to trouble (bother? frighten?) her were a few bumps while in her wheelchair as we went out that afternoon. The only problem I encountered that day (and it’s a minor one) was that she stepped up her talkativeness at dinner and afterwards. At 9:30, I could see that she wasn’t ready to stop, and I resorted to Seroquel. I’m not sure how quickly it worked because she was still talking when I went to sleep. I awoke at 10:30, and she was out after having been up a long time.

I admit to having mixed emotions regarding my giving her a sedative to get her to sleep. Although she was quite talkative, she was relatively calm and certainly happy. Since she is quiet so much of the time, I really enjoy hearing her talk even though most of what she says makes little sense to me and is rooted in delusions and hallucinations. On the other hand, I don’t enjoy it as much when it encroaches on our normal bedtime. I’ve spoken with her doctor who says that the dose I am giving her is very mild, but I plan to speak with him again, probably at her next appointment in early November.

It was no surprise that she slept until noon on Tuesday and was tired the rest of the day. Her eyes were closed most of the time while she ate dinner. She perked up a little after dinner but went to sleep shortly after Adrienne left and slept through the night.

Yesterday, she was awake early and fully rested. Once again, she was cheerful, talkative, and unflappable. It was a day that easily matched the great day we had on Monday. Two highlights stand out. Both occurred on the deck outside the ice cream shop during the afternoon.

The first was quite a surprise. Adrienne feeds the ice cream to Kate but stepped inside to get a drink. Kate then picked up her spoon and scooped a bite of ice cream for herself. On several occasions, she has picked up food in her hands and eaten it (something we encourage), but this was the first time she had picked up a spoon or fork and fed herself. Ultimately, Adrienne took over. It was difficult for Kate to get more than a small bit of ice cream, but it was good to see her try.

A woman came out of her apartment onto her deck and down the stairs for an afternoon walk. We had spoken to her on one of our previous visits. This time I got up and introduced Kate, Adrienne, and myself. When she returned from her walk, I invited her to join us at our table.

We had a very pleasant conversation for the next twenty minutes or so. We were interested to know that, by chance, she had been given an apartment that was her mother’s forty years before. We discovered that she knows quite a few people at our church, and I knew her sister-in-law.

During our conversation, I was struck by the fact that Kate seemed to be picking up on some of the things we were saying. At one point, she stopped me and said, “You’re talking too fast.” When our neighbor told us goodbye, Kate told her goodbye. Like feeding herself the ice cream, this was a little thing, but it is not typical. Often, Kate doesn’t speak when someone speaks to her, so I am really pleased when she does.

Like so many other things, I can’t explain why she has such good days. It is as if she is simply in a good mood on some days and feels more secure than on other days. I only know that these days bring me a special sense of joy, something I didn’t expect at the time of her diagnosis 10 ½ years ago. That’s one more reason for me to be grateful.

Music in the Morning

Regular readers of this blog know that music has been important in our lives. That was true before Kate’s diagnosis. Since then, it has played a more critical role both as entertainment and therapy. More than anything else I’ve talked about our nightly ritual of watching music videos on YouTube; however, it goes much further than that. Music plays throughout the day and night. It doesn’t usually start first thing in the morning, but when it does, its purpose is to solve a problem. That happened this morning.

I had just finished dressing and was about to go to the kitchen for breakfast. A few minutes before, I heard Kate say, “Hey” and then something else I didn’t understand. It isn’t unusual for her to talk while she is sleeping, so I hadn’t checked on her immediately. It was 6:53 when I entered the bedroom. Her eyes were open and she looked confused. It was one of those mornings when she awakes “without knowing anything.” She wanted to know what she should do. I explained that it was still early and that she could just relax and go back to sleep a while longer.

I should have learned from past experience that would not solve the problem. I think I was just eager to fix my breakfast and take my morning walk. I tried to calm her with words as I stood by her bedside but quickly decided to postpone my normal routine. I lay down beside her, put my head on her shoulder and my arm over her chest. I spoke softly to her and told her my name and hers and explained that we had met in college, fallen in love, married, and had children and grandchildren.

While this may have been useful information, she was still uneasy and wanted to know what she could do. That led me to go in another direction. Music can be comforting. Instead of trying to explain what she could or should do, I simply started singing “Edelweiss.” After just a few words, she seemed to relax. I sang it another time before pulling my phone out of my pocket and turning on the audio system to “Edelweiss.” I repeated it several times and hummed along with it. She was calm. Then I thought of several other songs that she likes (“Danny Boy,” “Shenandoah,” “Loch Lomond,” “Swing Low, Sweet Chariot,” and “Deep River”) and played them for the next thirty minutes. The crisis was over.

I don’t know what I would do without music. I’m hopeful I won’t ever face that.