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Making Progress and Speculating on the Future

It’s been a little over a week since Kate’s stroke. Although it was a mild one, it has made its presence felt. Clearly, she is making progress. The first four days she was asleep. Her doctor had told us to expect that. On Monday, she was awake almost all day with a few short rests in between. Between Friday and Monday, she was more alert and made a little effort to speak.  Tuesday was more of a day of rest.

She has continued to eat and drink well, and she hasn’t lost her smile. Music also retains its appeal. She often moves her body (feet, hands, or head) to the rhythm. and attempts to mouth the words.

I contacted her doctor on Monday and asked when we might get her out of bed. He said to use our best judgment. He also indicated that getting her out of bed would be good for her. The next day we got her into her recliner for the afternoon. That went very well. She rested most of that time, but it was good to see her dressed and out of bed.

Yesterday was an especially good day. Our regular caregiver had a doctor’s appointment, so we had two different people come in, each for two hours. The first was very experienced, and we were able to get Kate up and dressed and in her recliner. The second one was a person who had been with us two times before. She has a special touch with her clients. She immediately pulled up a chair beside Kate’s recliner and started talking to her. I made a trip to the grocery store. When I returned, I was surprised to see she was still sitting by her, and they were actually having a conversation. Most of what Kate said was unintelligible, but the caregiver was able to converse anyway. It reminded me of the way she and I converse.

When our regular caregiver arrived to take her place, we decided it was time to try taking Kate to dinner in the dining room. We agreed that if we encountered any problem along the way, we would come back to the apartment. It turned out that wasn’t necessary. We had brief conversations with other residents as we entered and left the dining room as well as at our table during the meal. Everyone spoke to Kate, and she responded remarkably well.

Despite how well she is doing, I can’t help wondering about the long-term consequences. The stroke affected her right arm and leg. She also has a slight droop on the right side of her mouth that has an effect on her speech. Initially, her right arm was totally limp. She can now move her arm a little although she strongly favors her left. I am hopeful that she will continue to improve.

I am less optimistic about her speech. She was already experiencing aphasia as a result of her Alzheimer’s. The stroke itself has had its own impact. Although she sometimes says a few words very clearly, her speech is more garbled now. She also speaks far less than she did before the stroke.

What is most important to me is that the Kate I’ve always known shines through it all. On Saturday, I was sitting up in bed beside her while we played music videos on YouTube. She was moving her head to the music of an Irish instrumental group. I leaned over and told her I loved her. Then I said, “You’re the greatest. You’re my Kate.” She smiled and said, “Yes, I am.” After five days with little attempt at speaking, those were three beautiful words to me.

About seven o’clock on Valentine’s morning, I noticed her eyes were open. I walked to her bedside and took her hand. She pulled my hand to her lips and kissed it. Yesterday afternoon, I told her I loved her and said, “I’d like to give you a kiss.” She puckered up, and I did.

Regardless of what happens in the days ahead, I think, “Our Love is Here to Stay.”

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“Focus on the Person, Not the Dementia”

I continue to believe that the most profound information I’ve learned during Kate’s journey with Alzheimer’s came from The Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost with dementia” and points out that while rational thought is lost, people with dementia continue to experience the world through their senses. That enables them to appreciate and enjoy many pleasures of life.

I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.

In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.

Here are other examples of how it worked with Kate over the past few days.

Kate’s mornings have always been the most troublesome part of the day. Not all of them are that way, but she usually gets a slow start. That means she doesn’t talk much, and, frequently, she doesn’t want me to talk either. Sunday morning was one of those. She appeared to be bothered by something.

I went through my normal routine. I tell her how glad I am to see her and how special she is to me. On good days, that’s a real ice breaker. On other days, like Sunday, it falls flat.

I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.

That led to a very nice conversation before she drifted off to sleep. She was half asleep when the caregiver arrived at noon. Sometimes that makes it easier to get her dressed and up for the day. This was not one of those times. She protested more than she has in several months.

I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.

Given Kate’s mood, I felt that it was better that I stay home instead of going out for lunch. In fact, I remained at home the entire time the caregiver was here. That led to some good things because Kate wasn’t getting any attention from the caregiver and looked bored. I took a seat beside her while she was in her recliner and read The Velveteen Rabbit to her. She perked up right away. I followed that by reading about one of her grandfathers from one of her photobooks.

Things were going well, and I suggested we go for ice cream. While we were out, she had a delusion and hallucinations that disturbed her. Her mood shifted. We went back to the apartment. I spent some time with her while holding her hand and talking to her in a comforting way. I assured her that I would take care of several specific things that troubled her. She became less worried, but she wasn’t as cheerful as she often is at this time of day. I wondered how things would go at dinner. That is usually a good time for her, and it went well except that she wasn’t as talkative as usual.

The day picked up after the caregiver left, and Kate was in bed. She was very relaxed and happy. We talked a little about how comfortable we felt when it was just the two of us. I treasure times like that. She was tired and slept for an hour while I watched one of the NFL playoff games.

Our daughter called as she was waking, and we talked for almost forty-five minutes. Kate often has trouble with phone calls but did very well with this one. It was a beautiful end to a day of ups and downs.

It was a day that reinforced how the personal touch makes a difference in the way Kate feels. It doesn’t prevent delusions, hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a long way toward relieving her anxiety or elevating her mood. That’s exactly what happened that day. Now, let’s look at another example that involves a caregiver.

One of my problems with our in-home care is that Kate doesn’t get this same kind of attention from any of her caregivers. I have accepted the fact that their training focuses heavily on things like bathing patients, dressing them, and using a lift to transfer them from bed to chair and back again along with a host of related things. Everything they do is important, and I don’t have the skill to do the things they do. On the other hand, they tend to focus on their basic skills and neglect treating Kate as a person.

That is why I feel that focusing on her as a person is my primary responsibility. As her husband, I’m in the best position to do this. I love her, and I do my best to express that love in every way that I can.

Having said that, we had an experience with a new caregiver on Monday that offers another example of the importance of having a personal connection with Kate. It also encouraged me to discover a caregiver who has the personality and skill to give Kate the attention she needs.

The new caregiver came to us for the first time one day last week. The agency had alerted me that she had not had much experience. I found that to be true, but she was more personable than most of the others, and I felt comfortable leaving for lunch. Before leaving, I put on a playlist of music I thought Kate would enjoy. I also explained to the caregiver that music had been very important to us. She told me it was important to her as well. She is active in a church choir and has written and recorded a few songs.

When I returned to the apartment, she was sitting in a chair beside Kate and the two of them had been singing along with a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see Kate singing with her. To the best of my knowledge, that has never happened with another caregiver. It made a big impression on me, and I was delighted when she was back on Monday.

That experience was a good one as well. This time they were in a conversation when I returned from lunch. I spent a little time checking email, and they continued to talk. It was truly remarkable and another great example of the difference it makes when someone is able to “Focus on the person, not the dementia.”

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A Victory with Sound of Music

Kate and I have always enjoyed movies. They became an especially important part of our lives after her diagnosis. Gradually, it became difficult for her to understand the plot and follow much of the action. I was about to give up on movies when we saw two that she enjoyed in 2018. One of them was Won’t You Be My Neighbor about Mr. Rogers’ television program. The other was RBG about Ruth Bader Ginsburg. We saw the Mr. Rogers movie at least four times and the Ginsburg film two or three times. I’ve had little success with movies since then.

Periodically, I’ve tried them at home with no success. It’s very hard for her to focus on them. On the other hand, we’ve had great success with music videos on YouTube and the Twenty-fifth-anniversary concert of Les Miserables. We watched the latter over and over for several months after I first got it. A lot of the non-music elements of the concert were unimportant to her although she did respond to individual singers as they sang their solos. The same is true of the other music videos we watch on YouTube. It’s really the music itself that catches her attention.

Last year, I bought several DVDs with the film versions of Broadway musicals. I thought she might enjoy them, but there is too much dialog between the songs to keep her attention. Last week, I decided to try again with Sound of Music. At first, I thought I would simply fast forward to the songs, but then I took a different approach. I narrated the movie for her, explaining what was going on and the emotions the characters were feeling. Having taken one of the Sound of Music tours on a visit to Salzburg years ago. I also reminded her of the places we had seen when we were there. I was pleased when she seemed to be engaged from the beginning, but how long would it last? The answer? Until it was time for us to turn out the lights.

The following night we began where we left off – with the scene outside the gazebo where von Trapp and Maria express their love for each other. Kate didn’t say a word, but she was touched by it. She took my hand and held it firmly. It was a beautiful moment for the two of us.

I know that she didn’t understand many of the things that happened during the movie, but it was clear that she experienced the same feelings that millions of other viewers have had while watching this movie.

After that success, I risked being disappointed by watching it again this week. It worked again. The first night, she enjoyed it just as much as last week, but she was tired last night. We’ll finish it tonight. I’m encouraged by her response. She’s always liked My Fair Lady and Annie. I might try one of them sometime soon.

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The Blanket

Not too long after our daughter, Jesse, was born 53 years ago, Kate decided she wanted to knit a baby blanket for her. She hadn’t dabbled in knitting before, but this was something she really wanted to do.

She got off to a good start but found that being the mother of a newborn required more of her than she expected. It wasn’t long before she put it aside “for the time being.” I didn’t know how far along she had gotten. I only knew that she wasn’t knitting anymore. It came up in conversation once in a while, but she never finished.

As I made preparations for our move, I came across the blanket. It was one of those items that called for a decision. Take it with us? Give it away? Throw it away? I quickly decided to take it with us but wasn’t sure what I might ultimately do with it.

A couple of months ago, I was talking with the woman who lives next door to us. She’s a knitter and participates in a knitting group in our retirement community. The group knits blankets for oncology patients who make regular visits for chemotherapy. I told her about Kate’s blanket. She volunteered to finish it for me. I liked the idea and told her I would get it to her, but I didn’t get around to it.

Three weeks ago, she and I were going back to apartments after lunch. I remembered the blanket and asked her to wait a minute while I got it. The next day she told me how beautiful it was and how close it was to being finished. It only needed an edge, and it would be done.

A short time later, she said she was almost finished and wanted to know if I would like the blanket back or donate it to the chemo patients. I said would be happy to donate it and thought Kate would like that as well.

The next week she told me she liked the way it had turned out and had been thinking of what to do with it. She said she thought it might be a good addition to our community’s gift shop. All the proceeds go to a residents’ assistance fund. I gave her permission to put it up for sale. It became part of the shop’s inventory this past Monday.

I stopped by to take a look at it that afternoon; however, by the time I got there, the shop was closed. While I was at lunch yesterday, I received a text from my neighbor with a photo she had taken of the blanket with the sales tag that read, “$45, Handmade by Kate Creighton” My first thought was “I should buy that myself.”

When I got back to the apartment, I started to write an email to Jesse telling her that it was finished and was on sale. I wrote only a few words before changing my mind. I thought it would be nice if I bought it and gave it to our daughter whenever she becomes a grandmother. I headed straight for the gift shop. Fortunately, it was still for sale.

There were only two people in the shop as I entered. One is a resident who is one of a number of volunteers who staff the shop. The other is one of the staff members of our community. They greeted me and asked what they could do for me. I point to the blanket and told them I wanted to buy it. I asked if they knew the story behind it. They hadn’t, so I explained.

When I returned to the apartment, I draped the blanket across Kate’s lap and told her what I had done. Now we will be able to give it to Jesse for her first grandchild. She had a big smile and loved the way the blanket felt to her touch. It was a Happy Moment for both of us. Maybe we’ll give it to her the next time she comes to town.       

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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.

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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.

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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.

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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.

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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.

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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.