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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.

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A Bump in the Road

Apart from Sarah’s Alzheimer’s, we have experienced two other health issues that have had an impact on our lives. One of those was her hospitalization with Covid in 2020.  

The second one occurred on February 7, 2022, when she suffered a stroke. That, too, has left its mark. I am copying below my below.

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.

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Morning Fright

For several years, Kate has periodically waked up and been frightened by not knowing anything (who she is, who I am, where she is, what she should, etc.). The “not knowing” has continued, but she has seemed less frightened or not frightened at all by it. I usually tell her who I am, her name, and that we met in college, fell in love, and have been together ever since. It doesn’t usually take long before she feels “all right.”

This morning her experience was different. It was much more like it used to be except her fright was less. It was more like she has been in recent years, somewhat more puzzled than frightened. I first noticed her less than ten minutes after beginning my morning walk. I walked to her bedside and could see immediately what the problem was.

My first effort to help her is what I described in the opening paragraph. It didn’t help. I got in bed with her, held her hand, and softly and calmly let her know that I wanted to help her. That seemed to give her a measure of security, but it didn’t solve the problem.

I had already turned on some relaxing piano music but decided to change to an album that had engaged her so much before Christmas. I started with “Edelweiss” and set it to repeat two times. As I was lying beside her, I created a playlist of other songs on the album that she also likes. I also interspersed “Edelweiss” several other times. (You may wonder how I can do this while staying in bed with Kate. The answer is that I control my audio system with my phone. It’s easy to use and has come in handy many times in similar situations.)

Once again, music came to my rescue. Before “Edelweiss” had ended the first time, she appeared more relaxed and closed her eyes. She soon fell asleep. I stayed with her long enough to be sure she was sleeping soundly. Then I finished my walk. It was forty minutes later, much longer than is usually required to calm her.

It’s been a long time since I’ve said this, but moments like this are among the saddest ones for me. Most of the time, Kate is happy. Of course, that makes me happy. I want her to be happy all the time. When she’s irritable, my emotion is “flat.” I mean that I’m neither happy nor sad. I do experience tension, but my focus is strictly on how to deal with the problem. When I’m not successful, I’m frustrated. That’s a different emotion altogether.

Kate’s being sad is much harder for me to deal with. I work hard to avoid her sadness. I don’t like to see her troubled in any way, and moments in which her brain is blank are the most disturbing moments of all for me. I talk a lot about our “Happy Moments.” I do that in this blog and in conversation with other people. I don’t do that to be deliberately misleading. I think those moments really are the most typical aspect of our journey with Alzheimer’s, but I don’t want to convey that everything is rosy. That’s impossible with life in general, and is certainly true for dementia, probably more so.

I’ve heard people say, “At least, she/he doesn’t know or is not aware.” That bothered me when my mother had dementia more than twenty years ago. I remember how often she said things like, “I don’t know what’s wrong with me.” She was bothered, and I have seen that many times with Kate. Her senses are still alive. She knows more than we imagine.

There is no way to solve the fundamental reason she becomes frightened. I can calm her when that happens, but I can’t cure her Alzheimer’s. That means moments like the one this morning will likely continue until the very last stages of her illness, and that makes me sad too.

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A Day of Anticipation That Ended in Disappointment

Yesterday began with a meeting with the owner of the new (to us) agency that is providing the help this week and in the future. This will be in addition to the three days a week now covered by our current agency. We had a good meeting. I feel very comfortable with them. That is especially true after my interaction with three of his staff last week. He was here about an hour. During that time, I gave him background on Kate and showed him the key areas of the house with which he and his staff should be familiar. He had a CNA prepared to be at our house at noon, but we decided I should call him as soon as I heard that Kate was being released. The nurse and the CNA were to head to our house for a brief orientation and to be present to greet Kate upon her arrival.

In the meantime, that gave me time to make a few preparations. When Kate’s mother lived with us, we had bought a steel ramp that we used to make it easy for her CNAs to get her down the two steps from our family room to our patio. Her mother passed away in 2005. It has been stored in our garage since then. Although it is very heavy, I was able to slide it across the floor of the garage and lift it in place on the top of two steps into the house.

Word about Kate’s hospitalization had gotten around, and I received a number of phone calls and emails offering support. This is the first time I have ever been in this position. I quickly learned something that I had only thought of before when it was someone else in our position. Some people hesitate to call because they may catch me at a bad time. My personal feeling as a recipient of such calls is that they are welcomed. I did have to cut short two or three when I received a call from the hospital or someone else with whom I was coordinating Kate’s return. I found the conversations themselves to be therapeutic. They also filled my day as I was somewhat nervously, but eagerly, waiting to see Kate for the first time in six days.

Shortly after 3:00, I received a call from Kate’s doctor at the hospital. She began by telling me it was her first time to see Kate and was trying to get a clearer picture of her “baseline” before COVID. I filled her in on the fact that she had been declining recently but had been able to stand and walk and was eating well. I explained that COVID had pushed her over the edge, and she had been very weak.

Then she told me that one of the things they had been monitoring involved a measure of muscle tone or strength. I wasn’t too clear on this, but it related to her ability to walk.  The measure had gone up to 700 from 200. The doctor thought it might have something to do with hydration. Kate has been on an IV to keep her hydrated, but she pulled it out the night before. They want to try again and see if they can improve the numbers before releasing her. She went on to convey that she didn’t want my expectations to be too high for her immediate recovery.

This was a gut-wrenching way to end a day of anticipation of Kate’s being back home with me. Perhaps, I will get better news today.

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Emotional Times

I always assumed that the last stage of Kate’s Alzheimer’s would involve sadness for me. That is happening now although it is only periodic. It is minimized by the many happy moments we continue to experience. In addition, there are times for which neither happy nor sad seems to be the right word. Those are tender moments when each of us feels a deep sense of love for the other as well as (at least on my part) the recognition that time is running out.

Sad moments for me occur when Kate is disturbed by her lack of memory and any sense of where she is or what she is supposed to do. Most of these experiences are in the morning and have become almost routine. I know how to comfort her, and most of them are not as serious as others. For that reason, I don’t usually feel sad.

Several days ago, she had an experience that was very upsetting to her and to me. It was definitely a sad moment and not one that happened in the morning. She had finished resting in the family room. I looked over at her and saw that her eyes were open. The expression on her face was one of concern. I asked if I could help her. She said yes, and I walked over to her. She wanted to go to the bathroom.

On the way, she continued to act as though something was troubling her. What I initially saw as concern wasn’t about getting to the bathroom. While seated on the toilet, she tilted her head down and held it with her hands. I don’t remember exactly what she said, but she was in tears and distraught. She said, “I feel like I am not alive. I don’t know anything.”

This was as sad a moment as I have felt. I focused on comforting her. I said, “I know you’re not yourself right now, but I want you to know I am with you and will always be with you.” When we finished in the bathroom, I took her to the family room where we took a seat on the sofa. I told her I had something I wanted to show her and picked up a three-ring binder of information about her and her family. I reminded her that she frequently asks me to “write that down for the book” she plans to write about her family and told her that the binder contained some of the information she had wanted.

She responded quickly. Offering comfort and diverting her attention are a powerful combination. I don’t know that it will always work, but, so far, it has.

Saturday morning, we shared a tender moment. I put on a Judy Collins album before trying to get her up. It was still playing when we got to the kitchen to take her morning pills before leaving for lunch. As usual, my focus was seeing that she took her medicine and wasn’t thinking about the music. Collins was singing “Amazing Grace.” The music caught Kate’s attention. She stopped taking her pills and commented on how beautiful it was. With tears in her eyes, she grasped my hand and held it tightly. I put my arms around her. She began to cry, and so did I. We stood there, arms wrapped around each other and enjoyed the moment.

As I reflect, I don’t believe either of us was simply responding to the music. Like many people, we love the song, but we have never reacted to it this way. I believe it was a catalyst that heightened our existing emotions. Music can do that. That may be especially true for us because we have devoted so much of our attention to it since Kate’s diagnosis.

This an emotional time for us. She is struggling with the symptoms of her Alzheimer’s. It is frightening not to know anything. It’s also an emotional time for me. I’m happy when she is happy, but the corollary is that I suffer when she suffers. In addition, I experience something she can’t. Although I can’t predict the future, but I am very mindful that our time together is rapidly diminishing. Music can move us anytime, but it is especially powerful when our emotions are on “high alert” as they are now. I am sure it will continue to bring us comfort in the days ahead.

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A Sad Moment

Over the past few days, Kate’s memory has seemed even weaker than usual. She often fails to remember her name and the names of her mother, father, and me. When I show her pictures or remind her of things about them, she generally shows a spark of recollection. That is less true recently and especially so today at lunch and afterward.

She has had trouble with her name and mine all day. During lunch, she asked my name, I said, “Richard.” She said, “I can’t call you that.” She struggled with how to explain, and I said, “Because you feel like you are too young to call me by my first name?” She acknowledged that was true. I said, “How about Mr. Richard?” She liked that.

As she often does, she asked the “name of this place.” I told her it didn’t, but it had an address and gave it to her. Then I said, “Some people think of it as Kate and Richard’s house.” She gave me a strange look. It was obvious that she couldn’t understand why it would be called that. I didn’t say anything more.

We were seated at our kitchen table, and a few minutes later, she said, “This is a nice room.” I agreed and told her I thought she would like to see the other rooms. When we finished eating, I took her to the dining room and told her I wanted her to see a few things from her parents’ house. She gave me another strange look and said, “Did I know my parents?” I told her she did. She said, “I don’t remember anything about them.” This was not the first time I had heard her say this. I told her I thought I could help her remember and started giving her the usual tour.

She expressed less interest than usual. She couldn’t get her mind off the fact that she didn’t remember them at all. She asked me where they are. I decided not to say they were gone. Instead, I said, “They’re in Fort Worth.” She said, “Did they like me?” I told her they loved her very much. She said, “If they did, why haven’t they seen me?”

I cut the tour short when she asked if I had any pictures of them. I took her into the family room to look at the “Big Sister” album that her brother had made for her. We didn’t get very far before she said, “I don’t remember any of this.” She was tired and asked if she could rest a while. That’s what she is doing right now. When she wakes up, she won’t remember forgetting her parents. The question is “Will she be fine, or will there be something else that disturbs her? Either one is quite possible.

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A Sad Moment to End our Day

The past few days have made me more aware of something many other caregivers  talk about. People with dementia can change quickly from one moment to the next. I frequently find myself caught off guard by Kate’s behavior. Take last night for example.

After spending most of the time sleeping or resting from Thursday night until getting up for dinner yesterday, she was in bed about 7:15 and asleep shortly after that. I was surprised when two hours later I heard her say, “Help me. Help me, please.” I told her I would. She repeated her pleas for help several times before I could get in bed.

After joining her in bed, I asked how I could help her. Her most common response is to say, “I don’t know.” Instead, she said, “I don’t know anything. Help me.” I told her I could help her and said, “First, do you know who I am?” She said, “What’s your name?” I told her and she repeated it but mispronounced it a couple of times. I coached her, and she got it right. Then I asked if she knew her own name. She didn’t. I said, “Your name is Kate.” She said, “Now let me say it.” She couldn’t remember it. I repeated her name twice. She repeated it successfully. For the next 15-20 minutes we repeatedly went over her name and mine. As soon as we finished one repetition, she wanted to go through it again. I wish I could capture the tone of her voice and how intent she was about trying to remember her name and mine. That is what made it so sad. She wanted to do something she simply could not do. The extent to which she was bothered is another example of her awareness that something is wrong with her. She was only successful a couple of times, and then it immediately followed my repeating the name. It was a powerful example of just how poor her short-term memory is, that is, virtually non-existent.

The only good news coming out of the experience is that she began to tire and wanted to go to sleep, and she as been all right today.

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A Nice Day with a Sad Ending

I am often worried that I will have a problem getting Kate up on days when the sitter comes or when we have some other commitment. Yesterday was one of those. I had planned to attend a luncheon sponsored by the health foundation on whose board I had served. It had been a while since I had attended any of their events and was eager to be there. Cindy, Kate’s Monday sitter, had an opening yesterday, so it was all arranged.

To top it off, getting Kate up was no problem at all. She woke up on her own around 8:30. and wanted me to take her home. That meant getting her ready was easy. We drove over to Panera where I got her a muffin and brought her home shortly before Cindy arrived. As usual, Kate was tired and got on the sofa to rest. She was wide awake when Cindy got here. She greeted her warmly and showed no reluctance to my leaving.

I enjoyed the luncheon. I got to see a good number of people I hadn’t seen in a while and sat by someone I hadn’t known and got acquainted with her. It was a therapeutic outing for me.

Kate was still resting on the sofa when I got home. Cindy said she hadn’t moved since I left. She also went to be early.

I watched some of the coverage of the New Hampshire primary and went to bed later. I know that Kate was asleep at least off and on before then. When I got in bed, I discovered that she was very uneasy. We began what turned out to be a long conversation. She wanted me to help her and asked where she was, who she was, who I was, and who her parents were. She repeatedly asked the same questions over and over again for almost an hour. As quickly as I gave my answers, she forgot them. I spoke to her very calmly and suggested that I would be able to show her some photos that might help her understand. She didn’t want to look at anything then. Throughout our conversation she was very comfortable with me even though she didn’t recognize our relationship. I told her we had been together a long time, and she asked if I were her husband. When I told her, she didn’t express surprise. It was a simple acceptance of what I had said. At one point, she told me that these were important things that she ought to know. I agreed and told her to count on me to answer all her questions.

It was a sad situation and one I couldn’t solve. It wasn’t like some other incidents in which she was frightened or desperately worried about why she didn’t know these things, but she was concerned and felt she should know. Finally, we both thought we should get some sleep, and we did.

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Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

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A Sad Moment

I am always happy to report on the Happy Moments that Kate and I share, but there are occasional times when I feel a moment of sadness. That occurs primarily in times when Kate is unhappy, experiencing anxiety or panic. To a lesser extent it also occurs when there is a change as she loses the ability to do things like working on her computer, the yard or her iPad, or the first time she forgot my name. I recover from her losses, but I have never gotten used to the times she is disturbed. One of those happened yesterday.

As I helped her dress, she was in a good humor, and I was sure that she recognized me as her husband. Then we went to the bathroom to brush her teeth. I asked if she would like some mouthwash. She responded as if I had said something that angered her. She said, “I just want to get out of here. I want to get back to my old self.” Moments later, she looked in the mirror and said, “I look awful. That’s not me.” She was very distressed. I told her I thought she was beautiful, but she didn’t believe me and didn’t want to hear that. She has always wanted me to be truthful with her but has also been aware that I want to say things that make her feel good.

In this case, the truth is that she has put on 40-50 pounds since her diagnosis. That has changed her physical appearance. She doesn’t look the way she did before. At first, I told her that we all change our appearance as we get older. She said, “It’s more than that.” My next option was diversion.

When we finished in the bathroom, I told her I wanted to show her something. I took her hand and we walked to the hall outside our bedroom where we have some of her family photos. First, I showed her the picture of her mother, then her grandmother, followed by her grandfather, and her father. Her mood changed immediately with the first photo. We talked about each one and then went to the family room where she reacted to the flowers, her ceramic cat, and another photo of her father. The crisis was over. The rest of the day she was fine.

This particular experience is just one other that lets me know that she recognizes she is not the same as she used to be, and it hurts. Her intuitive insights generally please me but those about herself are painful to her and, thus, to me as well. I take comfort that incidents like this are rare. I would rather have life the way it is now that what it may be like in the future when that self-awareness is gone.