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Two More Issues

As I indicated in my previous post, “Not everything goes as well as I would like”. On Tuesday, I was reminded of that again. We got off to a good start when she awoke early and seemed to be in a good mood. Over the course of the morning, however, she experienced what I described as a pain in her right leg around the knee that was affected by her stroke almost two years ago. She has not been able to straighten it since then.

I am used to the fact that she periodically lets out a scream or yell which is an unmistakable sign of pain. Fortunately, the pain appears to go away almost immediately, and she is perfectly fine. That morning was different. The pain seemed to go away after she screamed; however, her screams were repeated more than five times over a period of a couple of hours. She was fine after that.

When I returned home after lunch, she was happy to see me. She got along well until it was about time for us to go out for our daily ice cream and then dinner. She had been happy and more talkative than usual, but she began to talk more rapidly. Her smiles turned to expressions of agitation that conveyed she was bothered by something.

I put on some music that is usually calming for her. It didn’t work quickly, and I suggested to the caregiver that we give her some ice cream. We did, and it worked. A few moments later, we left for our normal trip downstairs for ice cream. I decided if any signs of agitation reappeared, we would come back to the apartment. Fortunately, she was fine after that. One of our residents stopped by to speak to her. She is always looking for a smile or verbal response from Kate. Most of the time, she is disappointed, but not that time. The result was that she stayed and talked with us 20-30 minutes before it was time for us to leave for dinner.

I was relieved that we didn’t have any more surprises, but I do wonder if these recent experiences are just isolated issues or whether we might see more things like this in the days ahead. Like so many other things, time will tell.

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Not Everything Goes Well

In my previous post, I described “An Extraordinary Day” with Kate. In many posts prior to that, I have discussed other “Happy Moments” in our lives. Monday, we had an experience that was the opposite.

One morning several months ago, I walked into our bedroom to see if Kate might be awake. She was, and she looked very frightened. When I got closer, I could see that she was hot. Her skin was clammy. I took her temperature, and it was normal. She was very agitated. I took her blood pressure, and it was 190/100.

That led me to call the doctor who came to our apartment accompanied by his nurse. They also took her vital signs and got the same results. It didn’t seem as though she was ill. They remained around for a short time, and she calmed down.

Several years ago, Kate experienced delusions and hallucinations periodically. Most of the hallucinations were not unpleasant at all; however, there were occasions when she was frightened in the morning. It was easy to spot even though she wasn’t able to tell me what bothered her.

My interpretation of her problem was that she woke up without knowing where she was, who she was, or who I was. On a couple of occasions, she asked, “Who am I?” I dealt with that by getting into bed and comforting her. I explained who she and I were and where we were. Mostly, I just lay there holding her hand and saying comforting things.

Nothing like that had happened in years, but the doctor and I decided she had had a delusion of some sort and was simply scared. The intensity of her reaction was much greater, and, afterward, I wondered if we might see more of this in the days ahead.

Nothing like that happened again until Monday morning. The symptoms were the same as they were before. She looked frightened. She was hot but did not have a temperature. Her skin was clammy, and she was agitated. Her blood pressure was 195/104. This time I didn’t call the doctor. I got in bed and moved close beside her and tried to comfort her. I also put on some soft music that I know she enjoys. About thirty minutes later, she was calm. She was fine the rest of the day. In fact, she had “Happy Moments” the rest of the day, but will this be something she experiences again? Right now, there is no way to know, but time will tell.

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Kate’s Aphasia

As I have noted in previous posts, Kate has made a good recovery from her stroke ten months ago. On the other hand, the stroke has had a lasting effect on her speech. Her aphasia is worse than before. That means I can’t understand most of what she says. My initial response was sadness for both of us. I felt it must be frustrating not to be able to communicate things she wanted to say, and I missed the kinds of conversations we used to have.

She began to experience aphasia a year or two before the stroke. At that time, she could tell that some things she said didn’t come out the way they should. She didn’t appear to feel frustrated, but she clearly knew that what she said wasn’t correct. Gradually, that disappeared. Now, she doesn’t display any sign of awareness that what she says doesn’t coincide with what she intends to say.

I never correct her. Instead, I act as though I understand every word and try to give her an appropriate response. Thus far, I can’t detect that she ever feels that I have misunderstood her. From the perspective of people watching us talk, I think we look like an ordinary couple having a conversation. If they could hear us, they might think both of us have mental problems.

In the last few months, Kate has grown more at ease with her surroundings and other people. That led to her talking more. Along with that, she sometimes says things that are very clear. They are always short reflexive comments to things that are said to her. During the past few days, she has made more clear comments than she has in the past couple of years.

I regret that I can’t remember many of the things Kate says, but I do sometimes jot them down right after they occur. Here are a few recent examples.

Yesterday (when we were having ice cream)

Resident (who saw me trying to help another resident with her phone): “What would we do without Richard to fix all our phones?”

Kate: “Yeah” and laughed.

At Home after Dinner

Caregiver (who had given Kate something to drink): “Did you have enough?”

Kate: “I suppose so.”

Few Minutes Later

Richard (after a comment by caregiver): “You’re giving (the caregiver) ideas.”

Kate: “I know it.”

Day Before Yesterday (Right after Finishing Ice Cream)

Kate to Caregiver: “Thank you for the party.”

Later at Dinner (Caregiver didn’t understand something Kate said)

Caregiver: “I don’t know.”

Kate: “She doesn’t even know.”

After Dinner

Caregiver: “I can’t go down my back doorsteps.”

Kate: “I can’t either.”

The caregiver and I laughed.

Kate to us: “You’re funny.”

Last Week (while having ice cream)

Richard to Kate: If you don’t like that, I’ll eat it.

Kate to Caregiver: “He would say that.”

Short Time Later (Caregiver had stepped away to get something for herself)

Caregiver: “I’m back.”

Kate: “I’m always glad to see you.”

Last Week

Richard to Kate: “I spilled some water on the floor.”

Kate: “We’ll see about that.”

These things may seem trivial to some people, but at this point in Kate’s Alzheimer’s, they are treasures to me. They are signs that the girl I married is still with me. She hears what is said in her presence and reacts accordingly. Along with that, she is happy. Me, too.

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Life Continues to Go Well

Three months ago, I reported that Kate had improved during the previous few months. The improvement was not with her Alzheimer’s. She was simply more at ease than she had been. She was awake more. She smiled more, She talked more and responded more frequently to residents and staff. At the time, I suggested that one reason for the change was that she has recovered from the stroke she had in February. I also indicated my belief that she was adapting to the new routine we have established here in our retirement community as well as the attention she receives from residents and staff. A month later, I said she had continued to get along well and wondered how long this would last.

It has now been a year and a year and seven months since our move and nine months since her stroke. I am happy to say that the bubble has not burst. She still requires total care with all of her daily activities; nevertheless, we still enjoy life and each other.

Kate has continued to improve. She is awake more. She has been waking up earlier in the morning, sometimes before 7:00 a.m. She usually goes back to sleep a little while later, but on a few occasions has remained awake all day. She is also less likely to go to sleep shortly after the caregiver leaves at 7:00 each night. The result of these changes is that we have more time together.

When she sleeps until the caregiver arrives at 11:00, I spend my time in the kitchen, living room, or office. When she awakes early, she is still slow to be ready for conversation, but I often get my laptop and sit up in bed beside her. As you would expect, I also accompany that with music we both enjoy. Very little talking occurs. Kate rarely says anything until after noon, but each of us knows the other is right there. We take pleasure in being together.

Our evenings remain the best part of our day. Kate is usually awake another hour or two before she goes to sleep. For several months after her stroke, she was asleep from the time we put her in bed until 11:00 or later the next morning. Sometimes she is talkative. Often she is not. In either case, she seems very much at ease. Relaxing music is also an important part of our time together.

Coincidentally, she was quite talkative last night. We talked for over an hour. As usual, her aphasia greatly affected our conversation. I can’t understand most of what she says although I can sense when she asks a question or other things she tries to communicate. Last night she spoke some words very clearly. She also expresses humor. She did that last night. She would say something and then burst out in laughter. I laughed with her and served as the facilitator to keep the conversation going.

This morning she was awake before 7:00. Not only that, she was talkative. After a while, she relaxed but never went back to sleep. I finished the rest of this post while sitting up in bed beside her. We watched and listened to Khatia Buniatishvili play Rachmaninoff’s Piano Concerto No. 2 until the caregiver arrived.

It is still impossible to predict how she will be in a particular situation. That seems to be governed by her Alzheimer’s. It’s like a little switch that clicks on and off when you least expect it. The residents and staff seem to accept this pattern with understanding. They are excited when Kate responds with a smile or an audible reply to what they have said, and they accept when she does not do either. In that respect, they are just like me.

I no longer wonder how long this good period will last. I simply enjoy the Happy Moments when they come. I have a sense the good times may continue a while longer along, but I realize that changes can occur at any time. In the meantime, life is good.

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A Touching Moment

Despite many challenges that accompany Kate’s Alzheimer’s, I attempt to communicate that we also experience Happy Moments. I believe I’ve been successful in that, but some experiences can also be described by other adjectives. One of those occurred two days ago. It was “touching” for me, her caregiver, and a friend who had dropped by to say hello. Let me explain.

Kate is a member (now inactive) of P.E.O., a women’s organization that supports educational needs of women. Kate is a former president of her chapter and has always liked and been impressed with another woman who preceded her as president. Several years ago, we bumped into her in the lobby of a local movie theater. We were leaving as they walked in. After chatting briefly, Kate said, “Who is that? I recognize her, but I don’t know who she is. I liked her.” I thought that was a beautiful example of the loss of her rational abilities and the strength of her intuitive ones. The feeling she had for the woman had clearly stuck with her.

Yesterday, she stopped by to say hello on her way to meet a neighborhood bridge group. I was pleased that Kate was awake early and in a cheerful mood. When the friend arrived, I took her into the living room to talk with her. It had been a long time since she had seen Kate, and I wanted to update her and let her know that she might not recognize her. In fact, shortly before I had told Kate she was coming, and she had no idea who I was talking about. Nothing I said rang a bell.

Kate was in bed. I entered ahead of her friend and explained that she had a surprise guest who had come to see her. The friend walked to her bedside, and Kate responded like the Kate I’ve always known as a welcoming host to her home, one of the things passed down from her mother. With a big smile (something else she got from her mother), Kate reached out her hand, and her friend took it. Then Kate took her other hand and stroked the top of her friend’s hand.

She asked the friend to sit down on the bed beside her. That began a ten-minute conversation between the two of them. Kate’s words didn’t come out the way she would have wanted, but she communicated a sense of recognition and love for her friend. While they talked, I wiped tears from my eyes just observing the poise and feeling that Kate conveyed to her friend. There have been many other occasions when I hoped she could respond in the same way to a friend or to our daughter and son, but she couldn’t. Had it not been for her being in bed and getting her words mixed up, she would have been just like always.

I’ve heard and read accounts of other caregivers who have observed surprising experiences like this with their own loved ones. This was not the first time she has surprised me with things she has said or done, but this was the most touching I have witnessed. It comes during a week when she has gotten along particularly well.

It was an opportune time for her friend to visit, but there was more to it than that. The friend was very calm in demeanor and tone of voice. She spoke slowly and in short sentences. Most importantly, her words also conveyed an interest in Kate. I believe one of the problems Kate has is feeling left out because so much of the conversation around her is among the other people who are present. I think that is because people don’t know what to say to someone with dementia.

We caregivers are always trying to understand why our loved ones say or do things, but what is most important is that we treasure moments like these. I will hold on to this one for a long time.

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Celebrating Happy Moments in Late-Stage Alzheimer’s

Although Kate’s recovery is much slower than I would like, I rejoice in the Happy Moments we continue to experience. As I’ve said in other posts, our evenings are very special. That’s not to say that they are the only special moments of the day, but they are the most consistent. It’s nice to have a day that ends well.

One of our caregivers was surprised when I told her about that. She wondered what we could be doing that would be so special. I’m sure she asked because Kate often seems so passive when they are here. In addition, when she is talkative, most of the caregivers don’t enter into the conversation. Much of what she says is rooted in delusions. That may be why they tend to ignore her. They don’t know her well, and it isn’t easy for them to live in her world by participating in her delusions. It’s much easier for me to do that.

I believe our good evenings occur because she senses that when it is just the two of us, she can relax. I won’t do anything to disturb her. She almost always recognizes me as someone familiar. That contrasts with her caregivers. She has 5-7 of them and all but one is new since Thanksgiving. She hasn’t developed a strong relationship with them. Apart from the length of time we have been together compared to her relationship with the caregivers, I am also more careful to give her my attention. My impression is that she may feel more alone when she is with her caregivers.

Night before last was an especially good night. We were both propped up in the bed watching a 1993 Barbra Streisand concert. She was in a good mood and enjoyed the concert more than most music videos. We talked about the concert and especially Streisand. It’s important to note that it wasn’t a time when her Alzheimer’s symptoms disappeared. Throughout the concert she repeatedly asked Streisand’s name, but she liked what she saw and heard. She was also very loving. She held my hand and ran her hand across my arm, and we expressed our love for each other. When the concert was over, it was time to call it a night. Before doing so, Kate asked if I could take a picture of us. I take that as another sign that she had a good time.

It’s not unusual for her to be both puzzled and fascinated about her top sheet and bed spread. She often asks me what they are. I explain that they are something to keep her warm during the night. She has another purpose for them. They’ve become a convenient “Fidget Pillow.” For those who are unfamiliar with fidget pillows, they are often pillows with a variety of buttons, ribbons, or other objects. Many people with dementia find them fun to fidget with. They come in a number of other forms than just pillows. I bought one for Kate a few months ago, but she’s never taken to it.

Her top sheet or bedspread has become her personal substitute. She uses two hands about 18 inches apart to pick up either the sheet or bedspread. While holding it, she pulls her hands together to make a “shape.” She continues to make different shapes and asks my help and approval of the work she is doing. We did this together for almost thirty minutes last night. She enjoyed it and admired her own “works of art” while I enjoyed being part of her fun. This is something else in which her caregivers are not likely to be a participant, and I understand how they might think this is just a silly game. For me, however, it’s rewarding to see her enjoy simple things like this. After all, it’s difficult or impossible for her to engage in many of the same things that appeal to us. As they say, “It’s important to live in her world.”

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How is Kate?

I am often asked how Kate is doing. Typically, these are situations in which I have little time to elaborate. For that reason, I’ve developed short answers that do the job. For years, I said, “She’s doing remarkably well.” During the past two years, I’ve been prone to say “She’s declining, but we still enjoy life and each other.” More recently, I’ve said, “Life is more challenging now, but we still enjoy life and each other.”

Her bout with COVID, especially her hospitalization, brought about the most abrupt changes she has experienced during the ten years since her diagnosis. Now when people ask me about her, I say, “She’s making progress but very slowly.” Here’s a fuller story.

Before we got the virus, Kate had entered the last stage of Alzheimer’s. That involved lots of delusions and hallucinations. In addition, I was concerned about her long-term mobility. It was becoming more difficult for her to get up from a seated or a prone position. For years, she had been frightened by sudden noises. I had to warn her when I was going to get ice from the ice maker. Even when I did that, she was often shocked. Along with that, she became uneasy going up and down steps. Her physician and I agreed that she would probably skip a walker and gravitate to a wheelchair because she was unlikely to be able to maneuver a walker. A week or two before she tested positive for COVID, I had to enlist the help of the owner of the Mexican restaurant where we had just finished our meal because she was afraid to step off the curb to get in the car.

A large percentage of the time, she did not know that she was in her own house. Thus, the experience of being taken from her bed to an ambulance and then to the hospital for eight days must have scared her to death. I have compared it to a person’s being kidnapped. Even though the hospital was a place for her to get help, she wasn’t in a position to grasp that. I am sure she was frightened off and on during her entire stay.

She quickly recovered from the physical effects of the virus, but she remained traumatized when she arrived home. We were able to get her up for less than an hour her first day home; however, she was too scared to get out of bed for the next seven weeks.

Today marks the sixteenth week since returning from the hospital. She has made slow, but very gradual, progress. Her physical recovery from the virus hasn’t been a problem. She never had any fever or breathing problems. She recovered quickly while in the hospital from the symptom that took her to there – weakness.

After coming home, we had Home Health for two months. Physical therapy was the primary object of their care. They discontinued service because she wasn’t responding as quickly as they had hoped. Once again, the problem wasn’t anything physical. It was, and still is emotional. She is simply frightened almost every time we try to move her in any way. That involves changing her, lifting her out of bed, putting her into her wheelchair, and putting her back in bed. During these moments, she can be quite combative. She often yells and screams at us. Sometimes she tells us to “Shut up” and “Get out of here.” On some occasions, she presses her nails into my arms and those of her caregivers.

There is one good thing. Her anger usually ceases as quickly as it comes. It is not unusual for her to apologize or thank us after each event. Frequently, however, she is very passive, non-talkative. That normally lasts a few minutes but can last as long as an hour or more.

During the first few weeks after her hospital stay, we did our best to minimize the problem because we felt we were continuing the hospital experience and didn’t want to aggravate her emotional problem. After seven weeks, we decided she needed to get out of bed if she was going to make the kind of recovery we hoped for. We noticed there were occasional times later in the afternoon when she wanted to get up and took advantage of it. At first, the caregiver (with a little help from me) lifted her from the bed to her wheel chair. We found that difficult and gravitated to using a Hoyer lift. Now, that’s the only way we get her up from her bed or a chair which we do four or five times a week. One of the things I like about this is that she and I get to eat dinner together at the table.

The lift works well, but Kate often protests at several points in the process. Each step involves maneuvering her in some way. Fortunately, once she is suspended in the air, she generally relaxes. This process is definitely less offensive to her than changing her, and we depend heavily on it.

My role in everything is to make Kate feel more comfortable. When we change her or get her ready for the lift, I get in bed and tell her what we are going to do. I also tell her that she can help by remaining calm while the caregiver does what she needs to do. When it’s time to turn Kate on her side, I ask Kate to give me a hug, and I put my arms around her. I count to three and pull Kate toward me while the caregiver pushes in the same direction. Kate usually screams or yells, but, once on her side, she is quiet. She holds me tightly and general strokes my back, and I do the same to her. Once in a while, I say, “We never imagined we would be doing this when we first married.” Despite the intended humor, this is a touching moment for me. Throughout the process the caregiver and I tell her she is doing well and thank her for helping us.

Over time, Kate has protested much less than before, but she continues to resist at least minimally most of the time. Last week she went several days with little combativeness. Then over the weekend, she gave us problems. What I hope for is that she will gradually sense that we are not going to harm her, but I am prepared to accept that she may never walk on her own again.

The best thing I can say is that she is happy most of the time, and our relationship never been stronger (except at those moments when we move her). Our evenings after the caregivers leave continue to be the best part of our day. This may not last forever, but I will always be grateful for moments like these and so many others we have shared for almost fifty-eight years.

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Sundowning

Among the many ways in which Kate and I have been fortunate is avoiding sundowning (sundowners, sundown syndrome), and, at this last stage of her Alzheimer’s, I began to think it was something we might not face. Not everyone does. To the best of my knowledge, my mother never did. I know my dad never talked about it. Since I visited them regularly in the late afternoon, it seems I should have had some personal observation if she had the problem.

I am also mindful that life is always changing. That is especially true with dementia. Nevertheless, I was caught a little off guard this past Friday when Kate, who had been happily resting in her recliner, became more talkative. It was more than just talking. The pace was faster than usual. It seemed like she was a bit hyper. Although it was late in the day, the thought of sundowners didn’t cross my mind. After all, I had observed this kind of behavior before and at earlier times of the day.

It was only at dinner when she spoke very sternly to her caregiver who was feeding her that I thought she might be sundowning. That was repeated numerous times before she finished eating. Her mind appeared to be focused on her own thoughts, not food. When it was time for dessert, she had her usual ice cream in which I mix her evening medicine. The dessert became her focus of attention. After that, she was back to normal, and we had a good evening.

Before the caregiver left, I told her I suspected that had been Kate’s first occurrence of sundowners and asked her opinion. She thought that might be the case. The next two days, we had similar experiences late in the day and during dinner. Each time, it was over when dinner ended.

After the three previous days, I was more prepared for a similar experience the next day. When she has been agitated before, my approach has always been to comfort her by speaking softly and slowly and conveying my love and support for her. That has always seemed to help. Based on what I had read about sundowning, I was doubtful that it was likely to work, but I wanted to try it.

Close to 4:30 when Kate became agitated and talkative. She also felt uncomfortable in her recliner and complained about pain. She wanted to get out of the recliner and go home. I kneeled down beside her and told her I would help her with whatever she needed. That had no immediate effect, but I continued my effort to comfort her. She did cool down somewhat but not completely. She was still disturbed.

The caregiver asked me if I had medications to give her for things like this. I told her the doctor had given me a prescription for Seroquel but I hadn’t used it since two days after Kate returned from the hospital at Thanksgiving. I told her I wasn’t ready to use it again. I didn’t want to resort to medication if I might have success without it.

I felt the need for something to distract her. Of course, I thought of music. I pulled my phone out of my pocket and turned on one of Puccini’s best-known arias, “O Mio Babbino Caro.” It’s a favorite of Kate’s. I’m sure it still is, but it didn’t do the trick this time.

I decided to try the Seroquel. The doctor had prescribed 1/2 of a 25mg tablet.  After giving it to her, I told her how much I loved her. As I did, I thought of another song that she likes and that I have often played for her, “A Bushel and a Peck.” I sang it along with the Doris Day recording. As I did, she smiled and started mouthing some of the words. I played it two or three more times. Then I selected a group of very familiar children’s songs from an album of 100 songs. I started with “The Alphabet Song” and continued with others like “Row, Row, Row Your Boat,” “The Bear Went Over the Mountain,” “Old MacDonald,” and “He’s Got the Whole World in His Hands.” Sundowners was a thing of the past.

We had no trouble at dinner. She happily ate everything. Midway the Seroquel kicked in. She was sleepy. As always we took her directly to bed after dinner. The difference this time was that she fell asleep immediately and slept until 9:30 yesterday morning. Normally, she is awake until 10:00 and sleeps until at least 11:00 the next morning.

Yesterday, for the fifth day in a row, Kate had a similar experience just before coming to the table for dinner. The first signs were a desire to go home and discomfort in her recliner. Again at dinner, she protested the caregiver’s effort to feed her. She ate about half of her meal before I decided to go straight to her ice cream for dessert. That turned the tide, and she was fine the rest of the evening.

Although I am unable to pinpoint the cause of these changes, she is obviously disturbed which makes me believe offering her love and comfort along with pleasant distractions have some therapeutic benefit. How well this strategy will work over the long run remains to be seen, but I am going to continue my preferred approach. I will definitely try comforting, music, and anything else I can think of before trying medication. I don’t mean to suggest that medication can’t play an important role in controlling sundowning. I just think it should be used only after pursuing other solutions. I am also going to be more sensitive to keeping her entertained late in the afternoon before dinner. It might postpone or prevent similar episodes.

Coincidentally, we had a telehealth appointment with Kate’s doctor yesterday afternoon. We talked about this, and she reinforced my suspicion that something other than medication is a reasonable first step in addressing the problem.

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Recovering and Declining At The Same Time

Kate’s recovery from her experience with COVID and her hospitalization is progressing. We are working our way into getting her out of bed almost every day now. The process doesn’t go as smoothly as I would like, but she is getting more accepting of our (the caregivers’ and mine) role in helping with her physical and mobility needs. That makes life a little easier for her and for us.

Sometimes it takes as long as an hour or more for her to reclaim her cheerful self after we get her up. The other day someone said, “At least they forget quickly.” That may be so if we are talking about her memory for specific incidents that may have annoyed (angered) her. On the other hand, I believe her senses can hold a feeling for a while.

Now that she is recovering from COVID, I notice differences that reflect her decline from Alzheimer’s. Some of that started as long as 6-12 months before getting the virus. One of those I haven’t mentioned involves her salivation. Four years ago, she stopped swallowing her saliva during most of her waking hours. That required my keeping paper towels or napkins in the car all the time. All our servers were sensitive to this and provided extra napkins for her. It declined a little after a 2-3 years, but now appears to have stopped completely. I don’t have a good explanation for it, but it correlates with other things that have changed.

Some of that involves her food preferences. She has never liked onions, but she eats them now so long as they are cooked. She doesn’t realize she is eating them. Similarly, she never liked coconut. Now one of her favorite soups is one we have gotten at a Thai restaurant. It contains a broth made from coconut milk. During the pandemic, we have used a caterer for meals once a week on Friday night. She sometimes includes a homemade version of a Mounds chocolate bar. Kate loves them.

Other changes make me feel sad. For years she has taken great pleasure in the beauty of trees, plants and flowers. Now she rarely comments on them when she sees them. Even when I pick up a plant and show it to her, it doesn’t invoke the same excitement it used to.

More troubling is the fact that she seems to be losing her interest in her photo books and other family pictures even those of her mother. She still maintains a strong feeling for her mother when she talks about her, but it has been weeks since she has expressed much interest in photos of her. Yesterday was a notable exception. We spent about thirty minutes looking at the “Big Sister” album her brother Ken made for her almost three years ago. She enjoyed every minute until she felt tired. If this decreasing interest in her photo books continues it will remove one of the most valuable “tools” in my “Caregivers Toolbox.” I have used them many times to entertain her or to shift her mood.

On a more positive note, it’s been a long time since she has awakened in the morning and felt afraid. I can’t believe that this is a because she wakes up clear-headed and knows where she is, who she is, etc. She just seems not to be bothered by it the way she used to.

The highlight of our day comes after the caregivers leave around 7:00. I usually get in bed with her and watch some of the evening news. While I take my shower, I turn on music videos for her. After showering, I return to bed with her, and we watch YouTube together and chat. She is perfectly at ease, and I treasure these moments.

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Delusions, COVID, and Recovery

Like many others with dementia, Kate has experienced delusions. They became more frequent over the past year. With the arrival of the pandemic and sheltering, they increased significantly. I attribute this to the fact that her life was less stimulating. I tried to compensate by entertaining her more at home, but we were still more sedentary than before. As a result, she started taking breaks to rest. Upon waking, she often experienced delusions. By the time she and I had our personal experience with COVID, they occurred during a significant portion of each day.

Once she had the virus, however, they disappeared. Overall, she was simply weak and didn’t talk much. It’s been four weeks since she came home from the hospital. She was gradually recovering but still wasn’t having any delusions. That changed last week when she experienced her first one since contracting the virus. They have become more common since. Night before last, she spent about forty-five minutes talking to me about a delusion that involved a group of people who were with us. As happened so much in the past, she thought we were in a hotel or lodge and had plans to do something with the others the next day.

This has caused me to have an unusual feeling. I had always interpreted the delusions as a sign of her decline from Alzheimer’s. Suddenly, I found myself viewing them as a sign of her recovery, not to her pre-Alzheimer’s self but to the way she was before getting COVID. It might seem strange, but I am happy to see this change. It is far better than the way she had been under the influence of the emotional and and psychological impact of the disease.

Her delusions represent signs that the effects of COVID are diminishing. She is also talking more and expressing more signs of happiness. These are encouraging signs. I just wish her recovery were faster.