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.”

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.

“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.”

More Special Moments

I don’t want to sound like the proverbial “broken record,” but Kate continues to be happy and to provide me with special moments. Knowing that this may not always be the case in the future, I guess I want to make a point of how well things are going right now.

Yesterday was a very good day. Kate was awake early, just before 8:00, and I spent the morning with her. When I returned from Rotary, she was still cheerful and talkative. She was glad to see me, and we talked a lot between then and our afternoon ice cream break.

It was after dinner when the first special moment occurred. It was the birthday of one of her childhood friends from Texas. I suggested we call her. Kate doesn’t usually express much interest in phone calls, but she thought it was a good idea. With most phone calls, she doesn’t say much. I’m always prepared to do what I can to prompt her and did some of that yesterday. The big surprise was how well she did. Not everything she said was understandable or made sense, but she was able to express her feelings toward her friend and convey how much she enjoyed talking with her.

That had gone so well that I decided to call one of her other childhood friends. She wasn’t home, so we left a message. I began the message by telling her that we were sorry to miss her and would try to call another time. Then I talked to Kate about her friend and gave her several prompts like, “I’m sorry we didn’t get to speak with her. That would have been nice, wouldn’t it?” To which she replied, “Wonderful.” It wasn’t a lengthy message, but once again, Kate rose to the occasion. I feel sure her friend will want to keep that message for a long time.

I couldn’t stop then. I recalled that a cousin of hers had recently asked me to call anytime Kate was up to it. This seemed like a great time, and it was. We talked for 10 minutes, and Kate was an active participant. By this time, what she said was more rooted in delusions, but I know her cousin understood and appreciated every word. It was a great conversation for all three of us.

After that call, we still had time before we needed to get Kate ready for bed, so I put on the album that mesmerized her when I played it a few weeks ago. It had the same effect this time. It was a very touching moment for both of us. She sang along with the music. That involved mostly whispering her own approximations of the lyrics but in sync with the rhythm of each song. We held hands for most of that time and, at one point, she took my hand and held it tightly in both of hers. Although much is lost with Alzheimer’s, both of us enjoy keeping romance alive. I am grateful.

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.

The Good Times Continue

I’m far from predicting what the future holds for us in 2022, but I know that 2021 ended well and that the first two weeks of the new year have been filled with good times. I don’t mean every moment is the way I would want, but I am amazed at how comfortable Kate has become. The best way I can approach an understanding of the change is to resort to the most important lesson I’ve learned while “Living with Alzheimer’s.” It’s something I picked up from The Dementia Handbook by Judy Cornish. She maintains that all is not lost with dementia. People living with dementia lose their rational thought processes or abilities, but they retain their intuitive thought or abilities. Rational thought involves our ability to remember names, places, events, and processes (how to do things). Intuitive thought involves our ability to experience the world directly through our senses.

People with dementia can still appreciate what they see, hear, taste, touch, or smell. Our senses open the door to many everyday pleasures. We’re at the end of a year of major changes in our lives (COVID and moving from our home to a retirement community), I believe Kate has grown accustomed to the daily routine of our lives. She senses that the things that frightened her before aren’t so bad at all.

This is apparent in two ways. First, she no longer experiences fright or anger when we bathe her, change her, dress her, or get her out of bed and into her recliner or wheelchair. Increasingly, she accepts the bumps that occur when we push her wheelchair over thresholds or minor changes in levels of the surfaces of floors in the hallways of our buildings.

Second, she is more comfortable with other residents and staff we meet when we leave the apartment. She is more likely to respond to them when they greet her or ask how she is doing. The caregivers and I were stunned at first but are getting used to hearing her say, “Fine, how are you?” One afternoon this week a resident passed by while we were getting ice cream. Kate was facing me with her back to him when I said, “Hi, Richard.” Kate, who doesn’t know him at all, said, “How ya doing, Richard?”

Shortly after that, another resident stopped and talked with us. At one point, she said she was thinking about going somewhere. Kate, who I thought was not listening to our conversation, said, “Let’s go right now.”

Mornings represent the greatest challenge for Kate. The toughest days are those when her mind is blank. She doesn’t know who she is, who I am, where she is, or what she is supposed to do. Fortunately, those don’t occur every morning. More typically, she is simply not fully awake. At these times, she may or may not remember my name or relationship. Most days, she doesn’t want to talk much.

In the same way (via her senses) she has learned over the past year that she doesn’t need to be afraid of everything, each day she also gradually seems to feel more comfortable with her surroundings and the people she is with. She is almost always at ease when it’s time for ice cream around 3:30. She enjoys her dinner and is usually quite comfortable and happy.

The evening is still the best time of the day for us. It’s just the two of us. Kate is often tired after the caregiver leaves around 6:30 and sometimes rests for as long as an hour. That’s my time to watch the news and take my shower. She’s usually awake after that, and we watch YouTube videos until time to turn out the lights. It’s a very special time for us. It’s a moment in the day when each of us expresses our love for the other. It’s not stretching at all to say it’s romantic.

So, I continue to feel good as we begin the new year. Of course, I don’t have any idea of what lies ahead, but I’m satisfied that we have made the most of our time together while “Living with Alzheimer’s.” I expect we’ll continue to do that regardless of what happens.

The Blanket

Not too long after our daughter, Jesse, was born 53 years ago, Kate decided she wanted to knit a baby blanket for her. She hadn’t dabbled in knitting before, but this was something she really wanted to do.

She got off to a good start but found that being the mother of a newborn required more of her than she expected. It wasn’t long before she put it aside “for the time being.” I didn’t know how far along she had gotten. I only knew that she wasn’t knitting anymore. It came up in conversation once in a while, but she never finished.

As I made preparations for our move, I came across the blanket. It was one of those items that called for a decision. Take it with us? Give it away? Throw it away? I quickly decided to take it with us but wasn’t sure what I might ultimately do with it.

A couple of months ago, I was talking with the woman who lives next door to us. She’s a knitter and participates in a knitting group in our retirement community. The group knits blankets for oncology patients who make regular visits for chemotherapy. I told her about Kate’s blanket. She volunteered to finish it for me. I liked the idea and told her I would get it to her, but I didn’t get around to it.

Three weeks ago, she and I were going back to apartments after lunch. I remembered the blanket and asked her to wait a minute while I got it. The next day she told me how beautiful it was and how close it was to being finished. It only needed an edge, and it would be done.

A short time later, she said she was almost finished and wanted to know if I would like the blanket back or donate it to the chemo patients. I said would be happy to donate it and thought Kate would like that as well.

The next week she told me she liked the way it had turned out and had been thinking of what to do with it. She said she thought it might be a good addition to our community’s gift shop. All the proceeds go to a residents’ assistance fund. I gave her permission to put it up for sale. It became part of the shop’s inventory this past Monday.

I stopped by to take a look at it that afternoon; however, by the time I got there, the shop was closed. While I was at lunch yesterday, I received a text from my neighbor with a photo she had taken of the blanket with the sales tag that read, “$45, Handmade by Kate Creighton” My first thought was “I should buy that myself.”

When I got back to the apartment, I started to write an email to Jesse telling her that it was finished and was on sale. I wrote only a few words before changing my mind. I thought it would be nice if I bought it and gave it to our daughter whenever she becomes a grandmother. I headed straight for the gift shop. Fortunately, it was still for sale.

There were only two people in the shop as I entered. One is a resident who is one of a number of volunteers who staff the shop. The other is one of the staff members of our community. They greeted me and asked what they could do for me. I point to the blanket and told them I wanted to buy it. I asked if they knew the story behind it. They hadn’t, so I explained.

When I returned to the apartment, I draped the blanket across Kate’s lap and told her what I had done. Now we will be able to give it to Jesse for her first grandchild. She had a big smile and loved the way the blanket felt to her touch. It was a Happy Moment for both of us. Maybe we’ll give it to her the next time she comes to town.       

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.

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.

A Late, but Welcomed, Christmas Present from Kate

It’s no secret to those who know me that music has been of great importance to Kate and me while “Living with Alzheimer’s.” As always, we have loved enjoyed Christmas music throughout the holidays.

Last night after dinner, I decided it was time to play some of our non-seasonal favorites. What followed was almost a full hour during which Kate was almost mesmerized by the music. In no time, she was smiling, mouthing the words, and moving her head and hands in time with the music. She was much more animated than she has ever been in the past. We only stopped because it was time to get her ready for bed before the caregiver left.

Her caregiver and I were amazed, and I was enjoying it so much that I didn’t think about taking a video. Fortunately, the caregiver motioned me to do just that. I took a number of videos that will be a precious memory of these moments.

After the caregiver left, there was a bonus. We continued to enjoy music and conversation in bed. We’ve had a “Very Merry Christmas.”