Posted on

A Week to Celebrate

As I have recently conveyed, Kate’s stroke has had an impact on our daily lives over the past 8 weeks, but last week was a very good one. In fact, she had a few moments that were every bit as good as those she had before the stroke. That doesn’t mean she has fully recovered. On the other hand, she has experienced moments of cheerfulness and clarity of mind that I hadn’t seen in a while.

The first occurred while we were having ice cream Monday afternoon. A retired Methodist minister, Tom, dropped by our table. During our conversation, he told us a few funny stories of experiences he had during his ministry. One of them involved a baptism. Methodists don’t typically baptize by immersion, but a new member wanted that, so he contacted a local Baptist minister for help. He agreed to let them use their church.

When the day came, the family gathered at the church. I don’t recall the details, but Tom asked where they should change clothes before getting into the baptistry. The minister pointed to an area beside the baptistry with a wire draped by a curtain and said, “Right behind this curtain.” As Tom performed the baptism, the curtain fell and exposed a man standing there stark naked.

The caregiver and I laughed, but what we noticed immediately was Kate. She was laughing as well. I don’t think I’ve seen her laugh so hard in years. Because she doesn’t say much, we often assume that she isn’t following conversations like this. Clearly, we were wrong in this case. As he regaled us with other stories, she continued to laugh as did we. It was a beautiful experience.

She was in a cheerful mood throughout dinner and actually responded to several servers and residents while we were eating.

During the past few years, I have had some success reading to Kate. As with so many other things in my caregivers’ toolbox, it hasn’t been as reliable in the past year or so. She has responded more favorably recently, so after lunch on Tuesday, I picked up The Velveteen Rabbit and sat in a chair beside her. Typically, I sit facing the same direction as Kate, but this time I turned the chair facing her. That enabled me to watch her facial expressions more closely. I am so glad I did.

Before reading to her, she was smiling and seemed more alert than usual. From the very beginning, she was engaged. As I read, I think each of us was attentive to the other and responded similarly. I try to read somewhat dramatically to emphasize the feelings of the rabbit as he encounters the various situations in the story. She loved the story, and I loved watching her.

She has also been awake more during the morning and evening. That has given us a little more time together. I have especially enjoyed that. After finishing my morning walks this past week, there have been a few times that I picked up my laptop, put on some music, and got into bed beside her. She didn’t talk much, but I enjoyed being with her.

She generally goes to sleep soon after we get her to bed, but the last two nights she has been awake until almost 10:00. The fact that I had the TV tuned to basketball may have had something to do with that. Whatever the reason, we enjoyed our time together.

I had intended to post this yesterday morning, but I got tied up in a few other things. That gave me a chance to add a couple of other events from yesterday afternoon. The first one occurred when Kate had finished her ice cream. The caregiver had bought something that looked like an antipasto salad. Kate looked over at it and said, “What do you have there?” That may not seem like much, but it would have been unlikely for her to ask that even before her stroke.

The other event happened after we returned from dinner. I hadn’t turned off the music before we left, and a Charles Lloyd album was playing as we walked in. Almost all the music is very relaxing, and Kate quickly took an interest. I pulled up a chair beside her and faced her. I took her hand in mine, and we sat there for thirty minutes listening to the music. With her eyes closed, she stroked my hand and arm and moved her head with the music. I spoke very little. She said almost nothing, but words weren’t necessary. We were connecting just the way we always have.

So, it’s been a great week. She’s been awake more, talked more, and displayed signs that she not only hears us but can respond appropriately. I realize that the coming week might be quite different, but, as always, I am grateful when Happy Moments like these occur.

Posted on

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.

Posted on

Sad Moments Accompany Happy Moments During Kate’s Recovery

Kate’s stroke occurred just over a month ago, and we are beginning to get a better idea of its more enduring effects. Her doctor is encouraged and thinks she may regain 80% of the abilities she had before. I think she has accomplished close to that right now. Almost every day, we see signs of improvement, so I’m not ready to say she has peaked.

After the first four days when she slept, we have gotten her out of bed every day except one or two. We only missed one week taking her to dinner in the dining room. We also added the afternoon visit to the café where she gets ice cream.

On the other hand, she is not like she used to be. That is reflected in several ways. Her energy level is much lower now. She has always been slow to get going in the morning, but she is sometimes like that until close to dinner though it is more typical that she perks up around three or four in the afternoon. Along with that, she seems to have more moments that trouble her on and off during the day.

She doesn’t talk as much. Previously, she would talk periodically during the day and even at night while she was sleeping. Since the stroke, she has had only a couple of moments like that. One of those occurred at dinner the other night. The caregiver and I were excited to see that. When she speaks, she often does so in a whisper that makes it hard to hear her. In addition, much of what she says is unintelligible.

In some ways, these changes are relatively minor. We were seeing signs of them before the stroke; however, the changes are more severe now.  It makes me think of our visits with Ellen, Kate’s best friend, whose stroke left her with aphasia. We made monthly visits with her, and it became very difficult to understand her. Aphasia also requires much more of the person speaking. In Ellen’s case, she could acknowledge hearing what you said and partially convey what she wanted to say. Kate remains silent much of the time. I miss hearing her voice.

For a long time, our evenings have been the best part of the day. Now, she is very tired when we put her in bed and frequently sleeps through until the morning. I continue to play music videos on YouTube with the hope that she might wake up and enjoy them with me. Sometimes that happens, but, more often than not, it doesn’t.

Finally, she has more moments when she doesn’t appear to know me or feel comfortable with me. She just looks perplexed. I interpret these moments as times when she doesn’t know where she is, who she is with, or who she is.

I’ve always known this was coming, but it’s been doing so gradually. The stroke has brought about a more abrupt downturn.

Let me close on a positive note. We still experience Happy Moments. They are just fewer in number and shorter in duration. When they occur, they are very special and lift my spirits tremendously.

Posted on

Kate is Making Progress, But Life is Not the Same.

As I’ve said before, I’m encouraged by the progress Kate has made since her stroke almost three weeks ago. She is awake more. She’s beginning to use her right arm again. Her eyes no longer appear to be frozen to the left. We have taken her to the dining room seven times, and Wednesday we took her for ice cream, (As it turned out, the freezer was down, so there was no ice cream, but she ate a muffin.) I’m amazed at how well she is doing. I also recognize that recovery is a process. She is likely to improve even more in the days or weeks ahead.

Nevertheless, Kate’s stroke is having a significant impact on us. Like her original Alzheimer’s diagnosis and her hospital experience with COVID, it is another challenge in our journey, “Living with Alzheimer’s.”

Several signs suggest the stroke might push her several steps further along this road. One is that she is less emotionally expressive than before. This is most noticeable when we are getting her dressed and in and out of bed. That makes it easier for the caregiver, but Kate has lost a little spark that we respected. In many ways, it seemed appropriate for her to protest.

She is also more neutral in her verbal and facial expressions. She smiles, but her big smiles occur less often. The good news is that she has another smile with her lips closed that I find endearing.

You’ve heard me say many times that she often awakes in the morning without knowing where she is, what she is supposed to do, and even who she is. That experience still occurs, but it seems that she’s more placid in her response rather than being puzzled or afraid.

Along with these things, there are more times when she doesn’t know who I am although she almost always senses she can trust me or does so within a reasonably short time.

I’m particularly concerned about her speech. Although her aphasia made it hard for her to communicate, we were able to converse. It is much harder now, not because I can’t understand what she says. It’s largely because she speaks so little, even when asked a simple question like “Would you like something to drink.” I have a litany of things I say to her about our dating, marriage, children, grandchildren, and travel. They often bring smiles and comments. That isn’t as true now.

I’m very happy to say that we continue to have our Happy Moments. A couple of mornings ago, she was awake early, and I took advantage of that opportunity to spend more time with her. I put on some music I thought she would like, but she didn’t show much interest. I shifted gears to see if I could perk up her spirits.

I put on an album of 100 children’s songs that I had downloaded several years ago when she was disturbed about something after waking from a nap. It saved us that day, and we sang together for at least thirty minutes. She quickly forgot about whatever had disturbed her. I’ve used that album periodically since then, but it had been a long time. I discovered it still works.

It was different this time because she doesn’t speak much. She tried, however, by mouthing the words. She’s good at following the rhythm. It didn’t take her long before I could see expressions of happiness on her face. She got a special kick out of “If You’re Happy and You Know It.” I stood at her bedside singing, clapping, stomping, and saying “Amen” when called for.

That night we had another Happy Moment. We’ve always had great evenings, but the stroke has made those different. Sometimes, she goes to sleep right after the caregiver leaves. Often, she doesn’t wake until the next morning. That particular night she woke up after an hour or so, and I turned to YouTube and selected a series of songs that I know she likes. I caught her at a good time. For over an hour, we held hands and enjoyed the music. Off and on, I talked to her about our marriage and children. She didn’t say much, but she said a lot with her facial expressions.

Yesterday afternoon, I didn’t have any special plans except a brief visit to the grocery store. I spent the extra time with Kate even though the caregiver was here. I pulled up a chair beside her recliner and talked with her. At first, she wasn’t in the mood for conversation. As I spoke, she loosened up a bit. We spent almost two hours together. She dozed off and on, and I did most of the talking, but she was very responsive with her smiles and facial expressions. We both had a great time.

The other day when we were out, the woman in the apartment next to us stopped to visit for a few minutes. She spoke to Kate who didn’t respond. Our neighbor commented that she missed her smile. Me, too, but they haven’t disappeared altogether. And moments like those described above give me an emotional boost and hope that we’ll have more of those to come in the days ahead.

Posted on

Making Progress and Speculating on the Future

It’s been a little over a week since Kate’s stroke. Although it was a mild one, it has made its presence felt. Clearly, she is making progress. The first four days she was asleep. Her doctor had told us to expect that. On Monday, she was awake almost all day with a few short rests in between. Between Friday and Monday, she was more alert and made a little effort to speak.  Tuesday was more of a day of rest.

She has continued to eat and drink well, and she hasn’t lost her smile. Music also retains its appeal. She often moves her body (feet, hands, or head) to the rhythm. and attempts to mouth the words.

I contacted her doctor on Monday and asked when we might get her out of bed. He said to use our best judgment. He also indicated that getting her out of bed would be good for her. The next day we got her into her recliner for the afternoon. That went very well. She rested most of that time, but it was good to see her dressed and out of bed.

Yesterday was an especially good day. Our regular caregiver had a doctor’s appointment, so we had two different people come in, each for two hours. The first was very experienced, and we were able to get Kate up and dressed and in her recliner. The second one was a person who had been with us two times before. She has a special touch with her clients. She immediately pulled up a chair beside Kate’s recliner and started talking to her. I made a trip to the grocery store. When I returned, I was surprised to see she was still sitting by her, and they were actually having a conversation. Most of what Kate said was unintelligible, but the caregiver was able to converse anyway. It reminded me of the way she and I converse.

When our regular caregiver arrived to take her place, we decided it was time to try taking Kate to dinner in the dining room. We agreed that if we encountered any problem along the way, we would come back to the apartment. It turned out that wasn’t necessary. We had brief conversations with other residents as we entered and left the dining room as well as at our table during the meal. Everyone spoke to Kate, and she responded remarkably well.

Despite how well she is doing, I can’t help wondering about the long-term consequences. The stroke affected her right arm and leg. She also has a slight droop on the right side of her mouth that has an effect on her speech. Initially, her right arm was totally limp. She can now move her arm a little although she strongly favors her left. I am hopeful that she will continue to improve.

I am less optimistic about her speech. She was already experiencing aphasia as a result of her Alzheimer’s. The stroke itself has had its own impact. Although she sometimes says a few words very clearly, her speech is more garbled now. She also speaks far less than she did before the stroke.

What is most important to me is that the Kate I’ve always known shines through it all. On Saturday, I was sitting up in bed beside her while we played music videos on YouTube. She was moving her head to the music of an Irish instrumental group. I leaned over and told her I loved her. Then I said, “You’re the greatest. You’re my Kate.” She smiled and said, “Yes, I am.” After five days with little attempt at speaking, those were three beautiful words to me.

About seven o’clock on Valentine’s morning, I noticed her eyes were open. I walked to her bedside and took her hand. She pulled my hand to her lips and kissed it. Yesterday afternoon, I told her I loved her and said, “I’d like to give you a kiss.” She puckered up, and I did.

Regardless of what happens in the days ahead, I think, “Our Love is Here to Stay.”

Posted on

A Bump in the Road

Many people use the word “journey” when talking about Alzheimer’s and other dementias. I sometimes hesitate to use the term because it seems trite. On the other hand, it really captures a relevant aspect of “Living with Alzheimer’s.” It connotes something that is long in duration and involves a variety of experiences. How apt that is in our case.

Like so many other aspects of life, there are things we expect and those that surprise us. This past Monday we got a surprise, one that potentially may have lasting consequences. Kate had a mild stroke.

We almost always have good nights. That was true Sunday night. We spent the evening watching YouTube videos. A lot of them were choral favorites like “Danny Boy” and “Shenandoah.”

We had a very nice Monday morning as well. She awoke around 8:00, and I spent almost the entire morning beside her in bed. I turned on an assortment of YouTube videos focusing mostly on Broadway favorites. She wasn’t talkative. That’s normal at that time of day, but it was obvious that she was enjoying the music. Several times she commented that it was “wonderful.” I told her how much I enjoyed being with her. She indicated the same to me. Off and on we held hands. The day was off to a good start.

Not long before the caregiver arrived, she went back to sleep, and I went to Rotary. The caregiver let her sleep until 1:00 when she got her up and gave her something to eat. She said that Kate didn’t finish her meal. She kept chewing but didn’t swallow.

After getting back from Rotary but before reaching our apartment, I received a call from an old college friend. When I walked in, I greeted Kate the way I usually do. She gave me a big smile, and I told her I would finish my call and come back to her. About twenty minutes later, I got down on my knees beside her recliner, enabling me to look directly into her eyes, and told her how glad I was to see her.

She didn’t say much, but she looked pleased that I was there. She smiled. As I continued to talk to her, she closed her eyes, and her breathing slowed down. I had a flashback to being with my father and Kate’s mother when they died. Kate looked the same way. I felt she was drifting away from me. I mentioned that to the caregiver. She had the same thought. I told the caregiver that I didn’t want to lose her, but it would be a beautiful way for her to leave me. The precious moments we had the night before and that morning passed through my mind, and I said, “I love you. I always have. I always will.” To me, it seemed like she was trying to respond, but nothing came out.

I called her doctor. His office is in the building next door, one of the advantages of being in this retirement community. He and his nurse came over. By this time, she was in a deep sleep, but her vitals were normal. He checked her eyes. They appeared all right. He lifted each arm and found that her right arm was completely limp while the left was normal. He said he couldn’t be sure but thought she had a stroke. He asked whether I wanted to take her to the hospital. We talked briefly. He and I agreed that it wouldn’t be good to put her through the hospital routine, so we kept her here.

She slept well except for two events, one around 9:30 when her breathing seemed labored. I called the doctor. I described what was going on and let him listen to her breathing. He didn’t think it was serious and suggested that I continue to let her rest. She fell asleep while we were talking. Around 11:30, she screamed and held her right hand against her stomach and then her chest. I felt her left arm. It was warm. I checked the right arm, and it was cold. I pulled the sheet and bedspread over her arm. I didn’t hear a sound after that until the next morning while I was in the bathroom getting ready for the day. She screamed again, but, whatever the cause, it was over before I got to her bedside.

The next morning the doctor returned to check on her. He didn’t notice anything new except that the muscles in her left arm were twitching. He didn’t say that indicated anything special, but I have since learned that this kind of reaction is not unusual for people who have had a stroke. That occurs when the damage to the brain occurs in the part that controls body movement. That might also explain the limpness in her right arm and the fact that her eyes tend to focus to her left.

I told him I felt this was might be a dramatic change in our lives. He acknowledged the likelihood of that though he stopped short of saying she wouldn’t recover. That’s what I expected him to say. He also said that we might observe periods of improvement mixed with more of what we are seeing now.

Since then, she’s been making a little progress each day. Until yesterday morning, she was asleep most of the time, waking periodically for just a few moments, but she has regained some of the strength in her right arm. For a period of time on Thursday, she was more alert although she didn’t speak. She is also eating and drinking much less than normal.

Yesterday (the fourth day since the stroke) was her best day by far. She was awake an hour at one stretch that morning. That’s the longest she had been awake since the stroke. She smiled more and laughed. She responded to several YouTube music videos, mouthing the words to “Battle Hymn of the Republic” with the Mormon Tabernacle Choir. She was especially animated during the chorus, clearly remembering the word “Glory” in “Glory, Glory, Hallelujah.”

She’s coming to life again. I know we may see some permanent damage. My biggest concern is her ability to speak. Aphasia was already a problem, something often experienced by people who have strokes. Still, I am hopeful we may eventually be able to get out for our afternoon ice cream as well as our nightly dinner in the dining room. At any rate, I think that’s a reasonable goal. Time will tell.

Posted on

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.

Posted on

Ending 2021 on a High Note

Change has become a normal part of our lives since Kate’s diagnosis in 2011. It’s difficult to predict how Kate will feel each day. Fortunately, she has an abundance of good and very good days, and on most days, more highs than lows.  Alzheimer’s, however, brings with it a host of challenges. The past 12-14 months have been among the most difficult ones of our marriage. Despite that, with only one day remaining before the new year begins, I can honestly say that I’ve never felt more upbeat than I do right now. And it all relates to Kate.

The biggest changes we faced this year really began just before Thanksgiving 2020 when Kate and I tested positive for COVID. Prior to that, she had been declining and showed the first signs of losing her mobility. I believe Covid pushed that ahead at least six months if not a little longer.

The experience was traumatic for her. She was in the hospital for eight days and bedridden for seven weeks after returning home. That meant everything we had to do for her had to be done while she was in bed. She didn’t like that and was verbally and physically combative whenever we had to move her.

We needed additional in-home care. For three years, we had in-home care four hours a day three days a week. We were fortunate to have had only two or three different caregivers during most of that time. When Kate got home from the hospital, we increased the care to 7-8 hours a day seven days a week. That involved more than ten different caregivers. That meant we didn’t have the kind of consistency I would have liked.

On top of that, we were scheduled to move to our retirement community in April. There was a lot to do in getting our house on the market and downsizing to a two-bedroom apartment. It’s a testimony to how easy my life has been that this was the most stressful period of my life.

Although our house sold quickly, and I was happy that we made the move, all of my normal routines were radically disrupted. That itself added a bit of stress. Fortunately, I began to develop new routines and to appreciate the various services that a community like ours offers. Life has certainly been easier here. It is also a very supportive community with an excellent staff that works to make the residents happy.

With the move, came a change in our caregivers. Now, we have one caregiver who is with us ten out of every fourteen days. She takes off every other weekend. Our only problem has been finding a person to fill in for her that weekend. We have another caregiver who comes every Friday. She’s been with us for more than four years. Unfortunately, I received word a few days ago that she is retiring and won’t be with us after today. On the whole, however, we have more consistency among our caregivers now than we have had in over a year. That’s been a good thing.

The best news I have about this year is Kate’s adjustment to her COVID experience and our move. At the time of our move, we were getting her out of bed a few days each week. That improved several weeks after the move, but she was still combative though less so than in the past. In another few weeks, we were getting her up every day.

That was followed by getting her out of the apartment a few times each week. We were out for a limited time and just strolled through the hallways and back home. Several times when the weather was ideal, we walked through the park that is on the grounds across the street from our building.

There are quite a few areas in our apartment and in the hallways of our buildings where we go from the floor to a carpeted area. Kate was frightened by the slightest bumps when we crossed them. As she began to feel more comfortable, we began to visit one of our cafes for ice cream in the afternoon. That is now almost a daily activity for us.

For a long time, I relied on carryout from the dining room for our evening meal. Then two or three months ago, we started eating in the dining room. That and our afternoon ice cream stop have become a very pleasant part of our day.

The best change by far has come in the past couple of months. Kate seems considerably more at ease than she has been since COVID a year ago. She is much more cooperative when we change her, dress her, and get her in and out of bed, her recliner, or her wheelchair.

She has also begun to respond to other residents when they speak to her. A few days ago as we were leaving the dining room, we saw four other residents. As we passed their table, Kate said, “How are you guys tonight?” Then she added, “What’s so funny over there?” Another night, the director of food services stopped at our table. He said, “How are you Mrs. Creighton?” Kate said, “I’m fine, but who are you?” On another occasion, one of the food service staff came to our table. She spoke to Kate a few minutes. When she said she was leaving for the night, Kate was sad and said, “I love you.”

Like so many other changes, I’ve tried to discover the cause. That’s always difficult. Most of the time I’m not sure. When I first noticed the change in her comfort level, I considered two possibilities. One is that it arises out of unknown changes that take place in her brain on a daily basis. For example, she can be at ease one moment and the next moment experiences a delusion that disturbs her.

The other possibility is that she has simply gotten used to life the way it is now. We have more consistency with our caregivers, and we follow a regular daily routine. As I suggested above, we started making gradual changes when she came home from the hospital. Although she’s never shown any sign that she recognizes we are living in a different home, the move was accompanied by significant changes. We continued to introduce her to new things and have now established a routine with which she has grown accustomed. At least, that’s what I believe, and for the moment, I’m sticking to it.

Apart from that, music continues to be very important to us, and our relationship is very strong. That doesn’t mean she always remembers my name and that I am her husband. It means that 90% of the time she recognizes me as someone familiar to her and someone she likes and trusts. Our relationship has never been stronger.

For all of these things, I am grateful and “feeling good” as we move to 2022.

Happy New Year to All.

Posted on

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.

Posted on

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.