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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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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.”

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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.