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Always Looking for Patterns

As a caregiver, I’m always looking for patterns in Kate’s behavior; however, I tend to talk more about variations. I suspect that is true for most of us. It’s the unusual things that stand out, not what is normal every day. There are exceptions, however. The first time something new occurs, I wonder if this is the beginning of a new “pattern.” Often, it is not, but that doesn’t keep me from wondering the next time I see something new.

Kate’s daily pattern has changed many times during the course of her Alzheimer’s. I remember the early days when she worked in the yard 6-8 hours a day. Later, she working jigsaw puzzles on her iPad became her primary activity. She did that, too, 6-8 hours a day. That ended with the pandemic. It was also the end of her self-initiated activity. I had to spend more time keeping her occupied. Despite that, she began to rest on and off during the day.

She’s gone through several changes in her sleep patterns. Most of the time since she was hospitalized for COVID, she has slept until 11:00 or noon almost every day. There were always exceptions, but I found I could pretty well count on her not being awake before 11:00. That gave me time to relax and take care of routine household or personal responsibilities.

More recently, perhaps the last couple of months, she’s been alternating in a somewhat unpredictable way between waking much earlier, sometimes before 7:00, and sleeping until 11:00 or 12:00. I haven’t tried to keep a record of the time she wakes and how she is behaving, but it appears that she has one or two days when she wakes early and then is worn out the next day. Sometimes when she wakes early she is talkative. On a number of those occasions, she’s been talkative a good bit of the day.

The past two days have been a good example. On Tuesday, she was awake around 8:30, just before I took my morning walk. I gave her some juice and her morning meds. She was somewhat talkative for that time of day and in a good humor. I expected that she would go back to sleep while I walked, but when I finished, she was wide awake and even more talkative. That doesn’t mean someone was actually there to talk with her, but she doesn’t talk as though she is talking to herself but somebody she imagines to be there.

I decided to join her in bed and talked with her. As usual, I couldn’t always understand what she was talking about. Some of her words were unrecognizable even to her. That is something new in the last few days and occurred a number of times that day. She would say something like “She’ll want to go to the ‘boober.’” Then she would say, “’Boober’? What’s that?” Each time it was always a different word.

I spent most of the morning with her but checked on her periodically when I was out of the room taking care of other things like finishing up a few details on our 2020 income tax for which I had taken an extension. She never stopped talking.

After the caregiver arrived around noon, I joined a couple for lunch in the café downstairs. When I returned almost two hours later, Kate was still talking. She was also fiddling with her clothes, running along creases in her pants as well as pulling her shirt up as if she planned to take it off, something she was unable to do. This was something I had noticed when I was with her that morning. She was somewhat agitated but not disturbed, just talkative and fidgety.

It was about the time that we normally go out for ice cream, but the caregiver and I agreed that it seemed better to remain at home. She gradually seemed less agitated but continued to talk. When it was time for dinner, we decided not to go to the main dining room. I brought our meals to the apartment.

After dinner, we sat on the balcony for a while before getting her ready for bed. Kate talked the whole time and continued to talk after we put her in bed. Shortly after 9:00, she was still talking. I gave her a 5mg tablet of melatonin and turned out the light. Twenty to twenty-five minutes later, she was asleep. It had been quite a day, certainly not her normal pattern.

I wasn’t surprised that she was very tired yesterday. She was still asleep when the caregiver arrived at noon. Adrienne let her sleep another hour or so, before getting her up for the day. She fixed Kate some lunch. Kate ate it all but was very quiet. She rested until it was time for dinner.

We ate in the main dining room. When we returned to the apartment, we spent a little time on the balcony before giving Kate a shower and putting her to bed. It wasn’t long before she was asleep.

She slept until 8:30 this morning. After my walk, I spent the morning with her. She was cheerful. We had a good time together. It looks like a more typical day, but after the events of the past couple of days, I can’t help wondering if we are in the early stage of a new pattern. Time will tell.

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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.

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Special Moments With Family

Although Kate is generally happy, her mood varies more at this stage of her Alzheimer’s than it has in the past. Sometimes, like Monday, she’s in an especially good mood. I treasure those moments as a gift from her.

She was awake before 7:00 that day and remained awake until going to bed that night. I took a short break for breakfast, but I didn’t take my morning walk, check email, or read the paper. I was engrossed by her happiness and wanted to enjoy every minute of it.

After her morning meds and something to eat, I got in bed beside her and turned on a mix of YouTube videos of highlights from concerts by Andre Rieu, his orchestra, singers, and dancers. Watching videos like this has been the centerpiece of our evening activity following dinner for at least the past five years.

During the past year or so, she’s been much less attentive to the videos themselves but continued to enjoy the music. I attribute this to the difficulty she has in knowing where to focus her eyes. She has the same problem when I show her pictures in an album or on the TV. Several times lately, I’ve been encouraged when I played YouTube videos of puppies doing cute things and discovered that they caught her attention at least for a moment. On Monday, as we watched together, she was engaged with both the music and the videos themselves. More than that, she was enthusiastic and expressed her pleasure repeatedly for almost three hours until the caregiver arrived, and I went to my Rotary meeting.

I was especially pleased that our son, Kevin, was with us and got to partake of most of the morning. He came for a visit last Thursday. The visit itself was special in that Kate’s brother, Ken, and his wife, Virginia, as well as our daughter, Jesse, were also with us. I was somewhat like a parent during this time, hoping that all of them would get a good understanding of how Kate is doing and why I say that we continue to enjoy life and each other. I am satisfied they did.

Monday morning stands out, but there were other moments over the weekend that were also special. Among them was a moment when I read Kate a resolution that our church had adopted in recognition of her service as the church librarian for 19 years. It’s been years since she has been able to remember this. When I remind her of her service, she usually recalls it with pride. It pleased her to hear me read this gift of appreciation from the church.

On Sunday, Jesse had a her own special moment when she got in bed with Kate and took a video of a brief conversation between the two of them. It was as special for her as Monday’s experience was for me.

Sunday afternoon, Kate and I shared another special moment when I handed her a stuffed bear that Ken’s wife had made for her. She didn’t say a word; they weren’t needed. She held the bear tightly in her arms and against her face for a full 15-20 minutes. It was a touching moment that I was able to capture on video.

The past few days with family went very well. Every one of us clearly recognized Kate’s decline, but we were all able to accept her as she is and convey our love for her. I think she would say that was the most special gift we could offer.

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What’s Going On?

Friends sometimes wonder about Kate and me when my posts are less frequent than usual. Most of the time it’s not because something is seriously wrong, but I often find myself occupied with other aspects of life that need my attention. Less frequent posts also reflect the changes that have accompanied Kate’s decline and the pandemic. Our world is smaller now than it was before, and we have settled into a routine lifestyle that leaves me with fewer new things to report. Here’s a quick update.

After being on a plateau most of the year with respect to her Alzheimer’s, Kate is exhibiting signs of another downward shift. I’ve mentioned some, perhaps most, of them in previous posts, but, in this one, I want to stress the point that she is falling deeper into a stage most people think of when they hear someone has Alzheimer’s or another form of dementia.

One symptom that carries a lot of weight for me is her increasing failure to recognize me, that is, in a cognitive or rational sense. It has been several years since she began to forget my name or that I am her husband. For a long time, that has come and gone from day to day or moment to moment. It is now a much more common occurrence.

The same is true for her own name or anything about herself and her family. In fact, the saddist moment I’ve had with her recently was when she was in a fog the other morning and asked, “Do I have a name?” I said, “Yes, you have a beautiful name, Kate, and your mother and daddy gave it to you.

On this occasion, I would say she was puzzled, not frightened, over her mind’s being blank. This now seems to be the best way to describe her morning “fog” whereas I used to say she was frightened, disturbed, or bothered.  

More often than not, she is still comfortable with me when these moments occur. She trusts me, likes me, and certainly feels dependent on me. When she wants me, she calls me by name or may ask the caregiver “Where’s my husband?” Sometimes it’s just a reflexive response. The other night, for example, we had an extended conversation in bed. She was very talkative, but delusional. Several times she referred to me by name.

On the other hand, there are more times when she doesn’t recognize me and asks, “Who are you?” She is often surprised when I tell her I am her husband. Sometimes she accepts the news without any emotion or receives it positively. As with other questions she asks, she sometimes says, “Who are you?” several times in not quite rapid-fire sequences.

I take these changes along with others like being less cheerful and her increasing aphasia to be critical markers of a new stage of her decline. More often than not, she doesn’t speak to people who speak to her. It saddens me to see this and recognize there is no way I can stop the progression of this disease that robs her of more and more aspects of her personality. Yet, we still enjoy life and each other, and I continue to see signs of the same Kate I met more than sixty years ago. It’s been more than 15 or 16 years since we noticed the first signs of her dementia. I feel sure she is getting along better at this stage than many, if not most, people “Living with Alzheimer’s,” and I am grateful.

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A Rough Start, But a Nice Day

Yesterday, as I was preparing for my morning walk (inside our apartment), I noticed that Kate was awake. She looked disturbed. It was easy to tell that it was one of those moments when she didn’t know where she was, who she was, who I was, etc. Her mind was an apparent blank. Although she didn’t recognize me, she didn’t appear to be afraid of me, only frightened by not knowing anything. This is something that used to occur occasionally before the pandemic. It seems to be making a unfortunate comeback.

I asked if she could tell me what was wrong. She said, “I don’t know.” I told her she had been sick and that sometimes caused memory problems. She said, “What’s my name?” I told her and then gave her my name and relationship along my usual recitation of our lives from college to having children. Sometimes she comes out of this fog rather quickly, but she didn’t this time. I turned on some relaxing music. Then I got her morning meds and gave it to her with some yogurt. I also made her a smoothie with cranberry juice, blueberries, and prunes, my latest effort to prevent constipation. I followed that with mandarin oranges. Her anxiety lessened, but she was still not cheerful. She looked a little tired, so I let her rest while I took my walk.

When I finished, she was very cheerful and talking to “someone.” That was the beginning of a day of talking and delusions that was only interrupted by an appointment with a podiatrist just before at 1:45. Knowing that the caregiver would have less time than usual to get her ready, I decided to fix her lunch. That was a good thing because Adrienne didn’t have to rush her while getting her dressed.

She remained in a good mood, but Adrienne and I were both a bit apprehensive about how she would respond to having her toenails cut. It had been too long, and Kate had protested vehemently the last time we tried. For that reason, I gave her half a tablet of Seroquel 25 mg. Normally, it takes effect with 15-20 minutes, but we couldn’t tell that it worked at all.

When we told Kate we were going out, she didn’t want to go. With a little coaxing, she agreed; however, her protest about leaving and the fact that the sedative didn’t appear to have worked added to my anxiety. Fortunately, the podiatrist’s “office” is only a short walk down the hallway. This is another benefit of moving from our home. We won’t trim her toenails again.

The podiatrist works primarily with seniors and visits a lot of local senior facilities in our area. Thus, she is experienced with the challenges she can face. Kate was quite comfortable with her. Her only protests came when the doctor lifted her feet to put them on a foot stool. She also screamed a few times during the trimming process, but she didn’t put up a fight.

After this successful experience, it seemed natural to stop for ice cream at the café we passed on our way to see the doctor. While Kate was enjoying the treat, two different people we have known from our church stopped at our table. We talked for about 30 minutes. When they left, we asked Kate if she were ready to go “home.” She said she wasn’t. We stayed another 30 minutes. During that time we asked several times if she were ready. Finally, we decided it was time and left. She didn’t protest at all. I’m glad she finds the café a relaxing place to spend some time. Adrienne and I feel the same way. It’s just nice to get out of the apartment.

We had more than an hour before dinner, so we spent that time on the balcony of our apartment. It was especially nice out as the temperature was much lower than usual.

Kate’s talkativeness had subsided until we got home. She began to talk again and didn’t stop until Adrienne left about 7:45. She even talked between bites at dinner. Once in bed, however, she relaxed and slept for about an hour. We watched a Peter, Paul and Mary concert on YouTube and then retired for the night. She was tired after a full day and was asleep in no time.