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

Feeling Thankful

This Thanksgiving I feel grateful for many things, but at the top of the list are all the special moments that Kate and I continue to share. That doesn’t mean everything is the way I would like. Kate’s day of obsessive talking last week was an unwelcomed disruption in a string of three good weeks. As noted in other posts, times like that makes me wonder if we are in for more of the same in the future. I won’t have an answer to that for a while, but I am thankful that each day since has been much better. I am particularly happy that our evenings after the caregiver is gone are almost always special.

What makes them special is that Kate is more relaxed. In fact, we’re both more relaxed. Most people who have had an opportunity to be with her in the last year or so would have difficulty imagining how natural she sounds. Only her delusions and aphasia prevent my understanding everything that she says. Apart from that, our conversations are like those we had before Alzheimer’s entered our lives.

I might even describe our evenings as romantic. It’s not like we were newlyweds, but we’re able to express our love for each other in a way that is just as meaningful. Touch has become much more important to Kate at this stage of her Alzheimer’s. She often reaches for my hand and runs her fingers up and down between my fingers. She also likes to run her fingers over the palm of my hand and along my forearm. Evenings like this are even more special at the end of a day when we have experienced more troublesome moments.

But it’s not just our evenings that are special. During any given day there are bright spots. One of those occurred last night after we returned from dinner. We had almost an hour and a half before the caregiver was to leave. Normally, we might sit out on the balcony for a while, but it was a little too chilly for us. We stayed inside, and we had just put up our Christmas decorations. I decided we needed some Christmas music and played a large portion of Handel’s Messiah. It holds a special place in our lives. Sixty-years ago next month, we went to a performance of it on our first date.

Kate was in a good mood and talkative but not obsessively so. As the music played in the background, Kate and I talked for almost an hour. Although what she said was filled with delusions, she asked me questions and answered my questions. Like some other conversations we have, they involved something that Kate was planning and wanted my help making decisions. We both expressed our opinions. Through it all, she was very calm, never agitated. She just wanted to be careful about what she was planning and wanted my thoughts.

I suspect this doesn’t seem special to most people, but to me it was. The difference, of course, is that I see it in a context that is different from those who are not living with Alzheimer’s. One of the things that those of us caring for spouses miss the most is conversations with our loved ones; therefore, I treasure them whenever they occur. Such moments don’t happen every day, but I am grateful that they are far from rare.

There is no denying that Kate is able to do far less now than at any time since her diagnosis almost eleven years ago. She lives in a world that is much smaller now, but I am grateful that she can still enjoy life and am optimistic that we will continue to enjoy life and each other for some time to come.

Wishing you and yours a Happy Thanksgiving.

Ups and Downs While Living with Alzheimer’s

My last post was upbeat, and for very good reasons. Kate had had a string of very good days. I should be clear that her Alzheimer’s has not improved. Her memory is no better than it was. Nor is her aphasia. She still experiences delusions that sometimes cause her to be afraid or annoyed, and sometimes she has periods when she does not recognize me at all.

The big change was in the comfort she feels when we go about our daily routine. That includes getting her dressed and out of bed each day as well as the reverse process that occurs every evening. She is no longer physically or verbally combative with her caregivers and me during these moments. She is also less vocal when we take her across minor bumps in the hallways when we go for ice cream and dinner.

Overall, she’s been happier, and less afraid of everything that has bothered her in the past. The good times continued until two days ago. It may have started the afternoon before when she had an unusually grouchy spell and yelled at the caregiver and me. We got through that and dinner without any serious problems, but she was not as cheerful with friends we met during this time.

I wasn’t sure what we might be in for that night. Fortunately, she began to calm down as we got her ready for bed. It turned out we had a very good night. I think she was worn out.

The next day, she was awake around 9:00. It was one of those times when she didn’t recognize me at all. She was also obsessively talkative. As in the past, what she said was rooted in delusions and hallucinations. I thought it would help if I got in bed beside her and tried to comfort her. She wanted me to leave.

I left for a short time. When I returned, I turned on some music that I hoped would be soothing. I got in bed beside her with my laptop and began to check email. A few minutes later, she apparently recognized me because she reached out to take my hand. I was with her the rest of the morning. During that time, she talked continuously, often pointing to places in the room for me to see people or things that were not there.

I was with her when the caregiver arrived shortly after noon. I briefed her on the situation and went downstairs for lunch. When I returned, the caregiver had fed her and put her in her recliner. She was still talking. I tried to calm her for about thirty minutes before she had a doctor’s appointment at 2:00. She relaxed somewhat, but she didn’t stop talking.

When the doctor and his nurse arrived, I answered the door and stepped outside to explain what was going on and that Kate was very different than she had been for their previous appointments. Then we went inside where we went through the regular routine as well as we could while she talked. She never responded to them verbally.

The doctor asked if I had given her a sedative (Seroquel). I told him I hadn’t but would have if it were bedtime. I indicated my preference was to make an effort to relax her and play music that I know she likes. I thought, however, that it would be a night for the sedative.

After they left, I spent almost an hour on my knees beside her in the recliner. I listened to her and responded to her in a very calm manner. She became somewhat more relaxed but was far from normal.

The caregiver gave her an afternoon snack. She stop talking for a while but started again when she was finished. She was somewhat more relaxed. I experimented with a variety of music including “Bushel and a Peck” and “If You’re Happy and You Know It.” She continued to relax, and I asked if she would like some ice cream. She said she would, and we prepared to leave. As we went down the hall to the elevator, she became agitated. We returned to the apartment. I also chose to eat in the apartment rather than go to the dining room for dinner.

She calmed down for dinner. After that we still had time to sit on the balcony for a while before the caregiver left, but I thought it was better to get her into bed. That turned out to be a good idea. She was worn out and soon went to sleep.

She slept for about an hour while I watched the evening news. When she woke up, we watched two symphonies on YouTube. She was at ease the entire time. We talked very little, but it was clear that she was all right. It was a happy ending to a trying day.

Yesterday, she was very tired. We didn’t get ice cream, but she was alert for dinner. When we returned to the apartment, she went right to sleep and is still sleeping. We had a very good run for three weeks. I’m grateful for that and suspect we won’t have a repeat. I am, however, confident that we will have many more special moments in the days ahead.

Some Days are Better Than Others, and Some are Very Special.

I’ve commented many times about Kate and her variations in mood and behavior. Many other caregivers report the same thing with their own loved ones. I’ve also heard stories about people who have been unresponsive for an extended time and suddenly experience a moment when they are more alert and talkative. Some families describe it as a miracle. Earlier this week, we experienced a moment like that.

First, let me provide a little background. Although I’m pretty good at accepting Kate’s unpredictability, I do get a little stressed when I make a commitment but am unsure how her mood might affect my plans.

Two weeks ago, our retirement community announced they are conducting video interviews with residents who would like to participate. The idea is to provide the residents and their families with a record of relevant aspects of their lives. Although they provide a list of questions the interviewer might ask, the format is not rigid. The residents or couples can modify or redesign the entire interview to suit their preferences. I liked the idea and was the first one to sign up. I created an interview focused on our marriage from our first date to the present under the title “Love, Discovery, and Adventure.” Our interview was Tuesday afternoon at 2:30.

Having set the appointment, I realized that I had also scheduled lunch at 12:45 to celebrate three anniversaries with my colleagues at the office. Two of them have been with me 40 years and the third 35.

In addition, the previous week I had been contacted by a nurse representing the insurance company that provides our long-term care insurance. Periodically, the company sends a nurse for an assessment interview to determine Kate’s eligibility for in-home care. She suggested three times last week, but I had conflicts for each one. She indicated that Saturday afternoon might be a possibility for her but would call me back. It turned out that didn’t work, and she suggested Tuesday at 10:30. I didn’t like the idea of having another commitment right before the other two, but I decided to accept it. That meant I was going to be distracted for all three of the day’s events. On top of that, I had no idea how Kate would do in the interview. Knowing that I needed to focus my attention on both commitments as well as my normal caregiving responsibilities, I felt a little stressed.

As so often happens, my concern was totally unnecessary. The appointment with the nurse went well. Sometimes the person assigned to make the visit tries to put Kate through the traditional dementia-related questions (Who is President? What is today’s date? Draw a clock showing that it is 2:00?) The past several visits I’ve requested the person not put her through this because she can’t do it and hasn’t been able to do so for years. This time the nurse said she felt it was unnecessary based on what I had told her about Kate.

Not long after the nurse left, our caregiver arrived, and I was off to our luncheon. That went quite well. Although we have worked together professionally more than thirty-five years, this was the first time for all of us to meet face-to-face since before the pandemic began in 2020. We had more to talk about than the time allowed.

Our video interview was icing on the cake. Kate was in a cheerful mood and more self-assured than usual. I told our interviewer that I would do most of the talking but would try to elicit some response from Kate. I won’t say she was talkative, but she was comfortable responding when I addressed her. In fact, she was the same way with the interviewer before and after the interview. Kate’s caregiver was in the room during the interview. She was as amazed as I. The entire process had been successful, and I am optimistic that the video will be something we can share with our children.

The rest of the day also went very well. We had a very pleasant dinner in the dining room, and we enjoyed our time together after the caregiver left.

It’s been a week, and Kate has had a streak of good days with special moments. I don’t have an explanation for these especially good times, but I will continue to savor them and be grateful.

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.”