Our 59th Anniversary

Kate and I celebrated our 59th wedding anniversary on May 31 last week. We gave up giving presents to each other many years ago. We concentrate on sharing special experiences together. That has often involved travel. Alzheimer’s ended that, but we always seem to find other ways to celebrate by being together. This anniversary week brought us an abundance of joyful moments.

It was highlighted by several particular events. One of those happened a week ago Saturday afternoon. I had just returned from lunch. Kate was resting in her recliner. I pulled up a chair beside her and started playing some of our favorite songs. For almost an hour, we held hands as we listened to the music. She closed her eyes, smiled, and ran her fingers over my hand. We forgot all that is going on in the world around us and enjoyed the music and being together.

Another happened on the following Tuesday, the day of our anniversary. I’ve looked forward to this for some time and have reminded Kate frequently over the past few weeks. She couldn’t remember, of course, but I hoped that my reminders might ring a bell when I wished her a Happy Anniversary. It was National Smile Day, and she smiled all day long. She was awake early, more alert, and more talkative. The following day was similar, so the day after she needed to rest and did so pretty much all day. She bounced back the next day.

Another thing made the week an especially good one. We had a new caregiver (Regina) Monday through Thursday. She had been with us one other time for just a couple of hours, and I had been impressed with the way she related to Kate. She sang and talked with her. That was most unusual. We’ve had only two or three others that I know have taken the time to connect with her.

Last week, she was here for four 8-hour days. At first, it looked like Kate was a little unsure of her, but on the third day, I got a surprise. I had been working on my computer in another room when I took a break to check on her. Regina had pulled up a chair beside Kate’s recliner, and they were holding hands. She told me that Kate had initiated the contact. It was a beautiful thing to see. Kate seemed perfectly comfortable with her. It reminded me of the way she relates to me.

There were more good times throughout the weekend. Kate had an especially joyful experience with music on Saturday. We had just returned to the apartment after an early dinner. I turned on one of her favorite albums by the Susquehanna Chorale. It includes songs like ”Loch Lomond,” “Danny Boy,” “Shenandoah,” ”Swing Low, Sweet Chariot,” and “Deep River.” She attempted to mouth the words of the songs and moved her head with the rhythm of the music. She was deeply moved by the music. I took pictures of her response along with several videos that I passed along to our family. It’s hard for me to express how wonderful it is for me to see her so happy. Music continues to be a powerful source of pleasure and therapy for both of us.

My expectations for our anniversary celebration were not high, but it was a week punctuated with joyful moments. “Living with Alzheimer’s” is not easy, but moments like those we experienced last week lift our spirits and sustain us during more challenging times. I am very grateful.

We’re Adapting.

I am mindful that my previous post was not as upbeat as usual, but I do believe it was an accurate portrayal of our situation at the time. Since then, Kate has been pretty much the same except that we’ve had more bright spots. Here are some of the positive signs that have occurred in the past week or so.

Although Kate is still not speaking much, she has surprised us on a number of occasions. Sometimes that has occurred with the caregiver and me, but it has also happened with other residents when we are out for ice cream or dinner. I don’t think I’ve heard her say more than three or four words at a time; however, it’s been exciting to hear her. It clearly communicates that she has understood what has been said to her and that she has responded appropriately.

Two nights ago, I was getting something to drink when a resident who was on the way back to his apartment asked if he could stop by our table and say hello to Kate. I told him that would be fine, but that she might not respond. He later told me she said, “Hello.” Our caregiver also told me that another person had spoken to her and she responded to him as well.

Music continues to play an important role in our lives. One night after dinner, I played an album of The Kingston Trio. She smiled and moved her head in rhythm to the music. I started singing along, and she tried to mouth the words as best she could. The best part came when they sang “M.T.A.” I wasn’t sure she would understand, but I explained the storyline to her. As we sang together, she broke into laughter. She must have understood more than I expected.

We had a touch of spring last week. That gave us an opportunity to sit on the balcony after dinner. I took my phone and a small speaker with us and played an album of The Carpenters’ hits. She was engaged for almost fifty minutes. For a good part of that time, we held hands as her facial expressions communicated how much she was enjoying the music. Moments like this are very special because she hasn’t expressed much emotion since her stroke seven weeks ago.

She has also responded to several things I have read to her. One of those is The Velveteen Rabbit. Another is a letter written by her grandfather to her grandmother on their 40th wedding anniversary. One other is a resolution given to her by our church celebrating her 19 years of service as our volunteer church librarian. These things may not seem so special, but they let me know that the Kate I have known so long is still with me.

She sleeps more in the morning and goes to sleep earlier at night. That leaves us with less quality time together. She experiences longer periods of time when she is awake but doesn’t respond to anything I say or seem to recognize me. Because of that, I was delighted yesterday when the caregiver told me that, “out of the blue,” Kate said, “Where’s my husband?” Life is not the same, but we’re adapting.

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.

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.

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.”

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.

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.

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.

Music Is Still One of the Best Tools in My “Caregiver’s Toolbox”

Periodically, I’ve talked about my “Caregiver’s Toolbox” and the fact that caring for Kate requires a lot of different tools to meet the variety of problems we encounter. I’ve also noted that some of these tools no longer work as well as they did in the past. In particular, photo albums don’t have the same appeal they did for years. One of those I can still count on much of the time is music. The pleasure of music continues to lift Kate’s spirits and provide many hours of enjoyment for both of us.

Since her diagnosis 10½ years ago, I’ve called on music to address specific problems. The first time occurred in the early days when I rushed her as we were getting ready to attend a concert by our local symphony orchestra. She had a panic attack and hadn’t fully recovered when we left the house. As soon as we were in the car, I turned on the second movement of the Brahms Violin Concerto. It’s a very peaceful adagio that runs just over 10 minutes. Kate was calm before it ended. That experience led me to create a short playlist of the second movements of the Brahms, Tchaikovsky, and Mendelssohn violin concertos for use on other occasions.

Several years ago, Kate was uneasy after awaking from a short nap on the sofa in our family room. I was seated across from her and went over to see what I could do to help. After an unsuccessful attempt to calm her, I started to sing a children’s song, the name of which I no longer remember. That seemed to bring a brief smile to her face, but my memory of songs escaped me. I took my phone out of my pocket and searched for albums of children’s songs on Google. I found one with 100 songs and downloaded them to my phone. For the next 30-40 minutes, we sang songs like “Polly Wolly Doodle,” “Old McDonald Had a Farm,” “The Bear Went Over the Mountain,” “If You’re Happy and You Know It,” and many others. The crisis was over in no time.

As I was about to go to sleep earlier this week, Kate had a delusion like many others she has had in the past. She was worried about someone she believed was coming to see us. She couldn’t stop talking about it. I tried to reassure her by telling her I would help her and that I had everything worked out, but that didn’t do the trick. I leaned upon music to help me. Lying beside her with my head on her shoulder, I began to softly sing “Edelweiss.” Then I hummed it again. I followed that by humming “Nearer My God to Thee.” My next step was to start a search for both of these songs to play on my audio system. Before I could do that, she had stopped talking. She was calm and drifted off to sleep. Music had come to the rescue once more.

There are many other examples of the ways in which music has enriched our lives. I don’t know how long this will last, but I’m optimistic that it will be important to us the rest of our lives.

“Happy Moments” Make for “Happy Days”

Almost all of our “Happy Moments” are unplanned. That’s part of what makes them special. One of those occurred the other morning when I was giving Kate her meds in a cup of strawberry and banana yogurt, a favorite of hers. After her last bite, she began to whistle. (She’s hasn’t been a whistler until the past 6-12 months when she began whistling to express her happiness.)

One of my many quirks is that I often hum, whistle, or sing softly without being quite aware of doing so. In this case, I began to whistle “Let Me Call You Sweetheart.” She expressed her pleasure with a smile. It doesn’t take much encouragement for me to break into song, and I sang the song to her. Spurred on by her pleasure, I whistled “Old Man River” and followed by singing it.

She was enjoying the music so much that I put on an album of children’s songs I downloaded 3-4 years ago when she was disturbed about something. Since that time, I have periodically used it for entertainment, not to solve a problem. We spent the next 20-30 minutes listening and sometimes singing songs like the “Alphabet Song,” “If You’re Happy,” and “The Bear Went Over the Mountain.”

When we finished, Kate was ready to rest, but it was another unanticipated “Happy Moment” that didn’t require any planning or great musical talent. Just two people connecting through music that added an extra measure of happiness to our day.

Some might say, “What’s so special about that?” John Zeisel answers that in his book, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s. He points out that too often we treat people living with dementia like “patients” rather than as “people.” We need to accept and appreciate their capabilities that last long after the diagnosis. It’s possible to maintain positive relationships with our loved ones with dementia through many things like photos and music that have been very important to Kate and me. This particular “Happy Moment” illustrates how we are able to continue to enjoy life and each other. May it always be so.