Welcome to Living With Alzheimer’s

March 1, 2021

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s about two years. We both tested positive for COVID two weeks before Thanksgiving, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but is still recovering from the trauma of being taken to the hospital by ambulance and the whole hospital experience. Although our lives have changed significantly, our relationship remains strong.

When she returned home from the hospital, I increased our in-home care to 7-8 hours a day seven days a week. She has made a gradual recovery but continues to be frightened anytime we have to move her in anyway while caring for her essential needs. For years, she has been frightened by many things, especially sudden noises. Her hospital experience added an additional source of fear.

I don’t know what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

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.

Update on Kate’s Talkative Days

After several posts between September 30 and October 5, Kate’s talkative days settled back into what had been our previous normal routine. That changed again this week.

On Monday, she was awake about 6:45. That changed my morning routine, but it was well worth it. I can’t recall her having a better day. She was far from wide awake, but her smile conveyed a cheerfulness that was to last until she went to sleep that night. I took care of her morning meds, something to drink, and her morning snack before the caregiver arrived, and I left for Rotary. I spent most of the morning beside her in bed and enjoyed every minute. We talked and enjoyed music videos on YouTube.

When I returned from Rotary and the grocery store, she, Adrienne, and I went out for ice cream. Since it’s not as hot as it was during the summer, we sat on a deck outside overlooking a beautifully landscaped area and remained there until going to the dining room for an early dinner.

It was a day when Kate seemed almost “unflappable.” The only things that seemed to trouble (bother? frighten?) her were a few bumps while in her wheelchair as we went out that afternoon. The only problem I encountered that day (and it’s a minor one) was that she stepped up her talkativeness at dinner and afterwards. At 9:30, I could see that she wasn’t ready to stop, and I resorted to Seroquel. I’m not sure how quickly it worked because she was still talking when I went to sleep. I awoke at 10:30, and she was out after having been up a long time.

I admit to having mixed emotions regarding my giving her a sedative to get her to sleep. Although she was quite talkative, she was relatively calm and certainly happy. Since she is quiet so much of the time, I really enjoy hearing her talk even though most of what she says makes little sense to me and is rooted in delusions and hallucinations. On the other hand, I don’t enjoy it as much when it encroaches on our normal bedtime. I’ve spoken with her doctor who says that the dose I am giving her is very mild, but I plan to speak with him again, probably at her next appointment in early November.

It was no surprise that she slept until noon on Tuesday and was tired the rest of the day. Her eyes were closed most of the time while she ate dinner. She perked up a little after dinner but went to sleep shortly after Adrienne left and slept through the night.

Yesterday, she was awake early and fully rested. Once again, she was cheerful, talkative, and unflappable. It was a day that easily matched the great day we had on Monday. Two highlights stand out. Both occurred on the deck outside the ice cream shop during the afternoon.

The first was quite a surprise. Adrienne feeds the ice cream to Kate but stepped inside to get a drink. Kate then picked up her spoon and scooped a bite of ice cream for herself. On several occasions, she has picked up food in her hands and eaten it (something we encourage), but this was the first time she had picked up a spoon or fork and fed herself. Ultimately, Adrienne took over. It was difficult for Kate to get more than a small bit of ice cream, but it was good to see her try.

A woman came out of her apartment onto her deck and down the stairs for an afternoon walk. We had spoken to her on one of our previous visits. This time I got up and introduced Kate, Adrienne, and myself. When she returned from her walk, I invited her to join us at our table.

We had a very pleasant conversation for the next twenty minutes or so. We were interested to know that, by chance, she had been given an apartment that was her mother’s forty years before. We discovered that she knows quite a few people at our church, and I knew her sister-in-law.

During our conversation, I was struck by the fact that Kate seemed to be picking up on some of the things we were saying. At one point, she stopped me and said, “You’re talking too fast.” When our neighbor told us goodbye, Kate told her goodbye. Like feeding herself the ice cream, this was a little thing, but it is not typical. Often, Kate doesn’t speak when someone speaks to her, so I am really pleased when she does.

Like so many other things, I can’t explain why she has such good days. It is as if she is simply in a good mood on some days and feels more secure than on other days. I only know that these days bring me a special sense of joy, something I didn’t expect at the time of her diagnosis 10 ½ years ago. That’s one more reason for me to be grateful.

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.

Back to a Typical Day

Kate’s first experience with incessant talkativeness occurred a week ago today. It was one of three days of extreme talking. Each day was followed by a day of rest. If the pattern had persisted, yesterday would have been a day of talking, but it wasn’t. Her caregiver and I were happy.

She awoke about 11:15 in line with what is normal for her. She was in a good mood although a little sleepy, again, something normal. I took care of her morning meds and gave her some juice and a snack before the caregiver arrived. Then, I left for Rotary.

When I returned, she had had lunch and was relaxed in her recliner. She was quite calm and not talking. When I approached her, she had a smile on her face. I told her I was glad to see her, and she said the same about seeing me.

They were giving flu shots that afternoon, and I decided to take advantage of the opportunity for both of us to be vaccinated. First, I went to see what it looked like and discovered there was about a 30-minute wait. I completed forms for both of us. Then I went back to tell the caregiver it might be better if they remained in the apartment until nearer the time for us to be called.

When I got back downstairs, they had moved more quickly than expected. I rushed back to the apartment and brought Kate and the caregiver with me. We were called in right away but had another 10-minute wait before someone came to give the shots. I didn’t think Kate would have any problems, but I wasn’t sure. I was relieved that it went smoothly.

We returned to the apartment for another thirty minutes before the dining room opened at 4:30. We have been going early and sitting in a corner of a room adjoining the main dining room. We’ve eaten in more public areas of the dining room in the past, but I prefer the more private area in case Kate should say or do something that might be disturbing to others. That hasn’t happened often, but her loud voice gets attention. As usual, she enjoyed every bite of her food and was in a pleasant mood the entire time.

After dinner, we spent almost an hour on the balcony. While we were there, Kate began talking. The caregiver and I both wondered if this might not be the start of something we couldn’t stop. Once in bed, however, she began to relax. That is not unusual. She has often rested an hour or more after getting into bed.

While she rested, I took a shower. Kate was awake when I finished, and I got in the bed beside her. For more than an hour, we lay there talking. We talked mostly about our relationship and how we felt about each other. It was another very special moment at the end of a day that had gone well and is more typical of our days than those of the past week.

A Day of Rest

It’s too soon to say Kate has established a new pattern of behavior, but there was a bit of consistency the past few days. Tuesday, Thursday, and Saturday she was very talkative for significant portions of the day. Tuesday was the most extreme. She talked almost non-stop from 8:30 in the morning until about 9:00 when I gave her a tablet of melatonin. That worked, but I gave her a sedative (Seroquel) on Thursday and Saturday nights.

It was no surprise that each of the days that followed her talkativeness and agitation she was very tired. She slept late and rested most of the afternoon as well. Yesterday was a good day of recovery. She was tired most of the day until dinner time. By then, she was quite rested, and we went to the dining room for dinner.

After the caregiver left, we relaxed in bed. I watched part of the Buccaneers/Patriots game with the sound muted and music playing for Kate. It was a welcome moment for the two of us after the past few days. I hope we find our way back to something a bit more normal in the upcoming week.

More on Kate’s Talkativeness

For the third time in the past five days, Kate was unusually talkative yesterday. I’ve welcomed some of that. That has been especially true during the morning when she has waked up much earlier than usual. I’ve enjoyed spending that time with her. The bulk of her conversation has involved delusions and hallucinations, but she has been happy and seemed at ease. That was true during the entire day. During the afternoon, we went to the café for ice cream. After Kate had finished eating, we went out on the deck beside the café. It is shady in the afternoon, and the temperature was so pleasant that we spent an hour there.

As on previous days this week, the pace of her talking began to pick up. She talked constantly while we were on the deck. We went straight to the dining room for dinner. I was somewhat uneasy because Kate was talking so much and can be loud at times, but the meal captured her attention. She ate well and seemed relaxed.

Upon our return to the apartment, we got her ready for bed. She was very cooperative, something that has become the norm in recent weeks. She began to talk a little more after the caregiver left, but she was relatively calm. Over the course of the next hour and a half, the pace of her talking picked up. At 9:00, it was obvious that she wasn’t going to be ready for bed anytime soon. I mentioned that I was getting tired and would soon get ready for bed. I don’t remember exactly what she said, but she conveyed that she wasn’t ready at all.

I prefer not to use Seroquel unless I have to, so I got her a melatonin. I muted the sound of the TV and turned on some soft music she likes. Forty minutes later, she showed no signs of sleepiness. At 10:00, I crushed a tablet of Seroquel and gave it to her in a spoonful of yogurt. I’ve only used Seroquel four or five times, and it usually takes effect within twenty minutes. An hour later, she was still going strong. I gave her another Seroquel and turned on a YouTube video of Andre Rieu and his orchestra accompanied by a very large contingent (at least 50) of brass instruments playing a very soft rendition of “Nearer My God to Thee.” I hummed along with the music. For a few moments, Kate eased up on her talking. She picked right up when the music ended. I switched to a recording of “Edelweiss” and hummed along with that. She started humming too. She also began to relax. I turned out the lights, and she was asleep by 11:30, almost two hours later than usual.

As I prepare to upload this post, it is close to 10:00 a.m. the next morning. She slept through the night and has shown no signs of waking. If she follows the pattern of the past few days, she will probably be tired and will catch up on her rest today. I’m still not ready to make any predictions. What will be will be.

Follow-up on the Two Preceding Posts

We had no problem with Kate’s incessant talking yesterday. She was quite tired. In fact, I wanted to take her for ice cream during the afternoon, but she preferred resting. She perked up a little at dinner but never displayed any of the agitation we observed on Tuesday and Thursday.

We had a very peaceful evening together watching music videos on YouTube. It was like the mid-week agitation had never occurred. No melatonin or Seroquel was needed, and I hope we won’t need them again anytime soon. I vote for “Never.”

Addendum to Previous Post: Time Did Tell

In yesterday’s post, I talked about my looking for patterns in Kate’s behavior. I was motivated to talk about that because she had an unusually talkative day on Tuesday. She was agitated, and I resorted to melatonin to get her to sleep that night. Predictably, she was very tired the next day. Yesterday started out like a somewhat typical day except for the fact that she was awake at 8:30, several hours earlier than normal. In my final sentence, I suggested that “time will tell” if Tuesday’s talkativeness/agitation was a unique happening or the beginning of another pattern.

As it turned out, yesterday was not quite like Tuesday; however, around 3:00 p.m. she became talkative but did not appear particularly agitated. At 3:30, I left for a residents’ meeting. When I returned at 4:30, Kate was talking with agitation similar to that on Tuesday. The caregiver and I decided not to go to the dining room. I brought our dinner back to our apartment. She began to calm down a bit while she was eating.

I thought we might be home free, but she started talking again as we got her ready for bed and continued talking after the caregiver left. Before 9:00, she seemed somewhat agitated. As I had done the other night, I gave her a melatonin. It had no effect. Just before 10:00, I gave her ½ of a 25mg tablet of Seroquel (not crushed) in a spoonful of yogurt. She swallowed the yogurt and spit out the pill. (These tablets are very small, so small that I was unsure I would be able to split them when her doctor first prescribed them. I thought she might swallow it uncrushed.) Then I crushed a whole tablet and mixed it in yogurt. She took it without a problem and was asleep within twenty minutes, and, as usual, she slept through the night and is still sleeping at 9:25.

What’s in store for today? I’m not predicting. I’m just going to wait and see. She should be rested after resting all day Wednesday and sleeping well that night and last night. The focus of my attention will not be on the time she wakes, but her incessant talking during the day and especially at bedtime. By itself, talking would not be an issue. What concerns me is the agitation that makes the talking so out of control.

During the past year, Kate’s behavior has seemed like she might be experiencing sundowning. I haven’t been ready to say that is it because her symptoms haven’t always appeared in the late afternoon or early evening. One of the two occasions this week began much earlier in the day. Nevertheless, I would say that her behavior appears to match what I have interpreted as symptoms of sundowning. If so, I will probably see this again. One thing I know. Tuesday’s talkativeness was not unique. Whether or not this becomes a pattern still remains to be seen. Once again, time will tell.

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.

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.