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

“Focus on the Person, Not the Dementia”

I continue to believe that the most profound information I’ve learned during Kate’s journey with Alzheimer’s came from The Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost with dementia” and points out that while rational thought is lost, people with dementia continue to experience the world through their senses. That enables them to appreciate and enjoy many pleasures of life.

I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.

In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.

Here are other examples of how it worked with Kate over the past few days.

Kate’s mornings have always been the most troublesome part of the day. Not all of them are that way, but she usually gets a slow start. That means she doesn’t talk much, and, frequently, she doesn’t want me to talk either. Sunday morning was one of those. She appeared to be bothered by something.

I went through my normal routine. I tell her how glad I am to see her and how special she is to me. On good days, that’s a real ice breaker. On other days, like Sunday, it falls flat.

I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.

That led to a very nice conversation before she drifted off to sleep. She was half asleep when the caregiver arrived at noon. Sometimes that makes it easier to get her dressed and up for the day. This was not one of those times. She protested more than she has in several months.

I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.

Given Kate’s mood, I felt that it was better that I stay home instead of going out for lunch. In fact, I remained at home the entire time the caregiver was here. That led to some good things because Kate wasn’t getting any attention from the caregiver and looked bored. I took a seat beside her while she was in her recliner and read The Velveteen Rabbit to her. She perked up right away. I followed that by reading about one of her grandfathers from one of her photobooks.

Things were going well, and I suggested we go for ice cream. While we were out, she had a delusion and hallucinations that disturbed her. Her mood shifted. We went back to the apartment. I spent some time with her while holding her hand and talking to her in a comforting way. I assured her that I would take care of several specific things that troubled her. She became less worried, but she wasn’t as cheerful as she often is at this time of day. I wondered how things would go at dinner. That is usually a good time for her, and it went well except that she wasn’t as talkative as usual.

The day picked up after the caregiver left, and Kate was in bed. She was very relaxed and happy. We talked a little about how comfortable we felt when it was just the two of us. I treasure times like that. She was tired and slept for an hour while I watched one of the NFL playoff games.

Our daughter called as she was waking, and we talked for almost forty-five minutes. Kate often has trouble with phone calls but did very well with this one. It was a beautiful end to a day of ups and downs.

It was a day that reinforced how the personal touch makes a difference in the way Kate feels. It doesn’t prevent delusions, hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a long way toward relieving her anxiety or elevating her mood. That’s exactly what happened that day. Now, let’s look at another example that involves a caregiver.

One of my problems with our in-home care is that Kate doesn’t get this same kind of attention from any of her caregivers. I have accepted the fact that their training focuses heavily on things like bathing patients, dressing them, and using a lift to transfer them from bed to chair and back again along with a host of related things. Everything they do is important, and I don’t have the skill to do the things they do. On the other hand, they tend to focus on their basic skills and neglect treating Kate as a person.

That is why I feel that focusing on her as a person is my primary responsibility. As her husband, I’m in the best position to do this. I love her, and I do my best to express that love in every way that I can.

Having said that, we had an experience with a new caregiver on Monday that offers another example of the importance of having a personal connection with Kate. It also encouraged me to discover a caregiver who has the personality and skill to give Kate the attention she needs.

The new caregiver came to us for the first time one day last week. The agency had alerted me that she had not had much experience. I found that to be true, but she was more personable than most of the others, and I felt comfortable leaving for lunch. Before leaving, I put on a playlist of music I thought Kate would enjoy. I also explained to the caregiver that music had been very important to us. She told me it was important to her as well. She is active in a church choir and has written and recorded a few songs.

When I returned to the apartment, she was sitting in a chair beside Kate and the two of them had been singing along with a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see Kate singing with her. To the best of my knowledge, that has never happened with another caregiver. It made a big impression on me, and I was delighted when she was back on Monday.

That experience was a good one as well. This time they were in a conversation when I returned from lunch. I spent a little time checking email, and they continued to talk. It was truly remarkable and another great example of the difference it makes when someone is able to “Focus on the person, not the dementia.”

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

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.

Posted on

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.