More Special Moments

I don’t want to sound like the proverbial “broken record,” but Kate continues to be happy and to provide me with special moments. Knowing that this may not always be the case in the future, I guess I want to make a point of how well things are going right now.

Yesterday was a very good day. Kate was awake early, just before 8:00, and I spent the morning with her. When I returned from Rotary, she was still cheerful and talkative. She was glad to see me, and we talked a lot between then and our afternoon ice cream break.

It was after dinner when the first special moment occurred. It was the birthday of one of her childhood friends from Texas. I suggested we call her. Kate doesn’t usually express much interest in phone calls, but she thought it was a good idea. With most phone calls, she doesn’t say much. I’m always prepared to do what I can to prompt her and did some of that yesterday. The big surprise was how well she did. Not everything she said was understandable or made sense, but she was able to express her feelings toward her friend and convey how much she enjoyed talking with her.

That had gone so well that I decided to call one of her other childhood friends. She wasn’t home, so we left a message. I began the message by telling her that we were sorry to miss her and would try to call another time. Then I talked to Kate about her friend and gave her several prompts like, “I’m sorry we didn’t get to speak with her. That would have been nice, wouldn’t it?” To which she replied, “Wonderful.” It wasn’t a lengthy message, but once again, Kate rose to the occasion. I feel sure her friend will want to keep that message for a long time.

I couldn’t stop then. I recalled that a cousin of hers had recently asked me to call anytime Kate was up to it. This seemed like a great time, and it was. We talked for 10 minutes, and Kate was an active participant. By this time, what she said was more rooted in delusions, but I know her cousin understood and appreciated every word. It was a great conversation for all three of us.

After that call, we still had time before we needed to get Kate ready for bed, so I put on the album that mesmerized her when I played it a few weeks ago. It had the same effect this time. It was a very touching moment for both of us. She sang along with the music. That involved mostly whispering her own approximations of the lyrics but in sync with the rhythm of each song. We held hands for most of that time and, at one point, she took my hand and held it tightly in both of hers. Although much is lost with Alzheimer’s, both of us enjoy keeping romance alive. I am grateful.

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.

The Good Times Continue

I’m far from predicting what the future holds for us in 2022, but I know that 2021 ended well and that the first two weeks of the new year have been filled with good times. I don’t mean every moment is the way I would want, but I am amazed at how comfortable Kate has become. The best way I can approach an understanding of the change is to resort to the most important lesson I’ve learned while “Living with Alzheimer’s.” It’s something I picked up from The Dementia Handbook by Judy Cornish. She maintains that all is not lost with dementia. People living with dementia lose their rational thought processes or abilities, but they retain their intuitive thought or abilities. Rational thought involves our ability to remember names, places, events, and processes (how to do things). Intuitive thought involves our ability to experience the world directly through our senses.

People with dementia can still appreciate what they see, hear, taste, touch, or smell. Our senses open the door to many everyday pleasures. We’re at the end of a year of major changes in our lives (COVID and moving from our home to a retirement community), I believe Kate has grown accustomed to the daily routine of our lives. She senses that the things that frightened her before aren’t so bad at all.

This is apparent in two ways. First, she no longer experiences fright or anger when we bathe her, change her, dress her, or get her out of bed and into her recliner or wheelchair. Increasingly, she accepts the bumps that occur when we push her wheelchair over thresholds or minor changes in levels of the surfaces of floors in the hallways of our buildings.

Second, she is more comfortable with other residents and staff we meet when we leave the apartment. She is more likely to respond to them when they greet her or ask how she is doing. The caregivers and I were stunned at first but are getting used to hearing her say, “Fine, how are you?” One afternoon this week a resident passed by while we were getting ice cream. Kate was facing me with her back to him when I said, “Hi, Richard.” Kate, who doesn’t know him at all, said, “How ya doing, Richard?”

Shortly after that, another resident stopped and talked with us. At one point, she said she was thinking about going somewhere. Kate, who I thought was not listening to our conversation, said, “Let’s go right now.”

Mornings represent the greatest challenge for Kate. The toughest days are those when her mind is blank. She doesn’t know who she is, who I am, where she is, or what she is supposed to do. Fortunately, those don’t occur every morning. More typically, she is simply not fully awake. At these times, she may or may not remember my name or relationship. Most days, she doesn’t want to talk much.

In the same way (via her senses) she has learned over the past year that she doesn’t need to be afraid of everything, each day she also gradually seems to feel more comfortable with her surroundings and the people she is with. She is almost always at ease when it’s time for ice cream around 3:30. She enjoys her dinner and is usually quite comfortable and happy.

The evening is still the best time of the day for us. It’s just the two of us. Kate is often tired after the caregiver leaves around 6:30 and sometimes rests for as long as an hour. That’s my time to watch the news and take my shower. She’s usually awake after that, and we watch YouTube videos until time to turn out the lights. It’s a very special time for us. It’s a moment in the day when each of us expresses our love for the other. It’s not stretching at all to say it’s romantic.

So, I continue to feel good as we begin the new year. Of course, I don’t have any idea of what lies ahead, but I’m satisfied that we have made the most of our time together while “Living with Alzheimer’s.” I expect we’ll continue to do that regardless of what happens.

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.       

Morning Fright

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

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

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

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

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

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

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

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

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