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My Favorite Part of the Day

I’ve often noted that mornings are the most challenging part of the day for Kate. That is a time when she smiles and talks less than she does later in the day. Although that continues to be the case, she does smile and talk a little more in the morning than she has in years.

Having said this, the late afternoon and evening remain the times she is more comfortable and at ease, which leads to more smiling and talking. My favorite time of the day is after the caregiver leaves at 7:00. Our primary responsibilities are over, and we can relax together.

Not always, but very often, we spend our time talking while watching music videos on YouTube . It is our conversations that I enjoy the most. They are quite different from our pre-Alzheimer’s conversations. The disease and especially the loss of normal speech make it difficult to understand what she is saying.

What is important to me is that she is relaxed. She is eager to talk. She is happy. She is also more comfortable talking with me than most people she encounters during the day. That tells me that our relationship is still special for her, just as it is for me, and that means the world to me.

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More Happy Moments

I feel I’m becoming a broken record, but I also want to record as many “Happy Moments” as I can before they come to an end. As I have said before, Kate isn’t cheerful all the time. She is typically in a neutral state. During that time, she doesn’t appear happy or sad. In fact, she doesn’t ever feel sad, but she is frequently happy. Her happy moments occur most often in the afternoon and least common in the morning. That fits with the fact that she has never been a morning person.

Over the last year or so, and especially in recent months, she has been waking earlier, feeling at ease, and sometimes talking. On those days, I often get in bed beside her. Wednesday of this past week was one of those days. As usual, I understood only a few words she said, but it was a very special conversation during which I talked about our first date and how that led to many others leading up to our marriage. At one point, I said, “I love moments like this with you.” She said, “I do too.” Her words were as clear as though she didn’t have aphasia at all.  

That afternoon was also special. She was in a cheerful mood when I returned from lunch. We talked for a short time, and I read The Velveteen Rabbit to her. I used to read it frequently; but after a while, she seemed to lose interest. I thought the Alzheimer’s had made it too difficult for her to appreciate it. In recent months, I have read it to her with much better success. She used to respond audibly to much of what I read. It’s not the same now, but she listens quietly and appears to concentrate on what I am reading. It is clear that she enjoys listening, and I enjoy reading to her. I treasure these moments.

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Let the Good Times Roll

Two months ago, I wrote a post recognizing the 13th anniversary of Kate’s Alzheimer’s diagnosis. Since that time I have added five new posts. Each one has celebrated “Happy Moments” with Kate. This is another one.

Kate has continued to make significant progress. Not concerning her Alzheimer’s, but she has more “Happy Moments” than when we moved to our retirement community three years ago. I haven’t kept score, but since January I don’t think a day has passed when she hasn’t been very cheerful at least part of each day. Let me remind you that this doesn’t mean she has Happy Moments all day long. Her mornings are still the quietest part of her day. Of course, she sleeps a good bit of the time before the caregiver arrives at 11:00; however, she has been waking earlier and is often smiling.

Her Monday through Friday caregiver and I have also been struck by the fact that she is saying more words that we can clearly understand. I keep a record of them as they occur. Here are a few from last week.

After I returned from lunch

Richard: It’s about time for us to go for ice cream.

Kate: That’s good.

After dinner that night

Richard: We’re going to have a nice night together.

Kate: I love it.

Just before leaving the dining room

Server: Goodbye. See you tomorrow.

Kate: I’m glad you’re here.

In apartment

Richard: I like all the pictures I see of you.

Kate: I thank you.

Getting Kate ready for bed

Kate: Coughing

Caregiver: Are you OK?

Kate: I strangled.

You may think of these as insignificant, but for someone who rarely says a clear word, it is very special.

I attribute much of her recent progress to her recovery from her stroke two years ago. Since then, we haven’t had any bumps in the road. In addition, she continues to receive a good bit of attention from the residents and staff at our retirement community. I, too, give her a lot of attention. I am only away from her about three hours a day. That comes when I am out for lunch, meeting friends for coffee, and/or running errands. In addition, I smother her with love from first thing in the morning until we turn the lights out each night.

Almost two weeks have passed since I began this post. Since then several everyday non-caregiving responsibilities have gotten in my way. During that time, Kate has experienced numerous Happy Moments. It should go without saying that has meant many Happy Moments for me. It has been an amazing time.

I know these moments won’t last forever; however, right now, I’m savoring every one of them.

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Happy Days

It’s been five weeks since the 13th anniversary of Kate’s diagnosis, and I haven’t had anything but good news to report. I’m happy to say that she continues to surprise me with her “Happy Moments.” They have been more frequent in the past two weeks. That is especially true when she and I are alone or with the caregiver, but she has also shared her cheerfulness with residents and staff.

I’ve been taking more videos because she has been talking more. Despite her aphasia, she appears to be communicating appropriately. I also continue to jot down things she says that are clearly understood. Here are a few of those from the past couple of weeks.

While having ice cream on Saturday afternoon, I said, “I didn’t have lunch today.” She said, “Why?” At Dinner that night, the caregiver said, “I had a cough.” Kate said, “What did you say?”

At dinner last Thursday, I said, “You’re entertaining us tonight.” She said, “That’s great!” As we neared the end of dinner, I said to the caregiver, “She really cleaned her plate.” Kate immediately said, “Yes!” A little later, she and the caregiver were waiting for me at the elevator. Kate said to her, “What are we going to do now?” Later in our apartment, I said, “You make me happy.” She said, “Yes, I know.”

Earlier this month, the Seekers were on YouTube singing “I’ll Never Find Another You.” I turned to Kate and said, “I’ll never find another Kate.” She said, “That’s wonderful.” These words may seem trivial to some people, but they don’t occur often; therefore, they are very special to me.

Kate has been saying things like this more often than in the past couple of years. Perhaps, the brain itself is repairing the damage from her stroke on February 7, 2022. Whatever the reason, I enjoy every word she speaks even when I can’t understand them. I just love hearing her voice.

Addendum

2024-03-04

The Happy Moments Continue

For the record, I would like to report that Kate’s “Happy Moments” have continued throughout the week since this post was written. As always, I want to emphasize that this doesn’t mean that they occur all day every day. She is usually in what I call her “neutral mood” in the morning. She tends to perk up in the afternoon, but this past week, she was unusually cheerful several mornings .

I am not naïve. I know that these good times will pass, but I have no idea when. It could be tomorrow or much later. In the meantime, I celebrate every “Happy Moment” she has.

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Good Things

Two thousand twenty-four is off to a good start. Our caregiver issue is almost solved. The first month after losing our regular Monday-Friday caregiver, we had 29 different caregivers. After ten weeks, the total is 40. That means we’ve had only 11 different caregivers in the past 6 weeks. Not only that, but the caregiver who had originally said she could work every Monday, Wednesday, and Friday had a change in her schedule that allows her to work every Thursday as well. Now, we only have to find a person to take care of Tuesday. Until then, we have different people filling in. Fortunately, most of them have been here in the past. This improvement reduces most of my stress.

More importantly, Kate has shown more improvement in recent weeks. As I have said in previous posts, this does not mean an improvement in her Alzheimer’s. It does, however, indicate that she is more at ease which is expressed in her smiles and her speech. It is still difficult to understand her, but her speech indicates that she is happy. From my perspective, that is what is most important.

I am especially pleased that our relationship remains strong. That isn’t reflected in every moment of every day. She is still very quiet on most mornings. On some mornings, she doesn’t express any recognition or interest in me. Other mornings, she does.

She expresses her feelings for me most often when I return home after being gone for a while. At other times, it is in the evening after she is in bed, and the caregiver has left. Last night was one of those.

She had already had a talkative afternoon. When we have occasions like that I generally expect that it won’t continue as we move to other activities. That was no problem last night, and we had a conversation that lasted at least an hour, perhaps a little longer. Sometimes she seems a little hyper when she is talking. This time was different. She spoke slowly and responded to what I had said. Sometimes she asked me a question, and I gave an answer that I hoped would be appropriate for the question she had asked.

During our conversation, she smiled a lot and laughed a good bit as well. It is hard for me to put our feelings into words. The best I can do is to say that we were both perfectly at ease and engaged in a conversation that meant a lot to each of us. I might say it was a beautiful bond of love that transcended her inability to say much that I could understand. I could almost imagine that it was one of those early days when we were dating. It was like each of us was enthralled by what the other was saying. She was still in late-stage Alzheimer’s that requires total care for all of her activities of daily living. For those moments, however, neither of us was mindful of that. We were, and still are, a couple in love, and Alzheimer’s has not been able to take that away from us.

Moments like this will not last forever. For now, we will enjoy every Happy Moment that comes our way.

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Tender Moments at Stage 7

Yesterday, I worked on a draft of a new post focusing on Kate at this stage of her Alzheimer’s. I haven’t finished, but we had an experience during the afternoon that I decided to tell you about first.

I often think of the fact that our relationship has changed so radically over the course of Kate’s Alzheimer’s. Many things that were a regular part of our lives are now gone, but love remains and makes itself known to each of us every day. One of the changes is that she no longer does things with the deliberate intent of making me feel happy.

When she does express her affection for me, and I don’t believe a day passes without her doing so, it is a simple, often non-verbal, expression of her love. That would not be enough for some people, but it is for me. The impact of simply reaching for my hand has great impact, something that would not have had the same value early in our relationship.

We had one of those experiences yesterday. The caregiver and I started to take her out for a stroll around the hallways and to get a milkshake when she became upset. She refused to put her feet on the footrests of the wheelchair. That not only makes it harder to push her, it runs the risk of twisting her feet and legs as she drags them on the floor. I suggested to the caregiver that we back off, give up the idea of going out, and just focus on calming her. She was sulking as we went out on the balcony.

I put on some music that I thought might calm her. Then I took her hand and spoke to her very gently. I expressed my love for her and talked about our falling in love in college, getting married and having children. I spent at least 30 minutes doing this without her displaying any change in mood. Then I said something she thought was funny. She smiled and laughed. I said, “I guess you think I’m a silly guy.” She responded quickly and firmly with a “No.” That opened the door for me to mention how much I like her smile.

We sat quietly for a few minutes while the music played. Then she looked at me while pulling her hands together and held them close to her chest as though she were trying to tell me something. She followed that by extending her hand to me. I reached out to take it, and she pulled it to her chest and held it tightly. We looked in each other’s eyes, and I said, “I love you. I always have. I always will.” It was a tender, yes, romantic moment, for both of us.

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Update on Our Recovery

I’m glad to report that I’m almost fully recovered. I haven’t had a sore throat the past five days, and I’ve never had any other symptom.

Kate’s situation is much different. She hasn’t had any of the other typical COVID symptoms, but she is still weak. She has slept most of the time she has been in the hospital. The first day she enjoyed her breakfast, and talked to the nurse. The nurse had turned on the TV to a music channel, and Kate enjoyed it. I was happy to know the nurse had thought of this because I hadn’t said anything about the importance of music.

The hospital’s biggest problem with Kate is that she fights them every time they move her. That happens a lot – when they turn her from her back to her side and back again. They have been bathing her, but I believe they are all bed baths because it would be such a struggle to get her up. I know they have not gotten her up to walk, and that is at least partially because it would be so traumatic for her.

Kate is a very gentle person. This behavior is not consistent with her personality. I think she is simply scared. I try to imagine what she might be thinking. I’m sure she doesn’t understand where she is and who all the “strange” people are. The nurses and other attendants have, no doubt, explained that she is in the hospital, but she wouldn’t be able to remember that longer than a few seconds.

Friday, I arranged for her nurse to connect us for a phone call. That didn’t go well. She never said a word. I tried for almost ten minutes to get her to talk. I told her my name and reminded her that we had met in college. I also talked about our children and grandchildren. I told her I loved her and missed her, but nothing worked. Yesterday, we had a FaceTime call. That, too, wasn’t the answer. It never appeared that she saw or recognized me. Her eyes certainly didn’t light up if she heard my voice.

I received some good news this morning. The nurse told me that Kate had mentioned my name and that she said, “Kate Creighton” when the nurse asked her name. I realize that comes and goes all the time, but I think that was a first since she was hospitalized.

Even better, I was able to talk with her this afternoon. The third try, over the phone, was a charm. She could hear me and was talkative. We had a 10-minute conversation. What she said was clear in terms of words I could understand, but she didn’t make a lot of sense. That happens all the time at home. I was thrilled to hear that her voice was strong and that she laughed as she spoke. I was ready for more good news and was quite encouraged that she seemed to be getting stronger. It truly made my day.

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This Morning

I looked at my watch. It was 5:29. I felt rested and decided to get up. Kate and I were lying very close together. She said, “Who are you?” I said, “It’s me.”

Kate:             “Are you a boy or a girl?”

Richard:        “A boy.” Kate (very calmly): “Well, I don’t think we should be in the same bed together.”

Richard:        “I was just about to get up.”

Kate:             “What are you going to do?”

Richard:        “I was going to get dressed and then have breakfast.”

Kate:             “That sounds good.”

Richard:        “It’s still early. You might want to sleep a little longer.”

Kate:             “Okay.”

Richard:        “I love you.”

Kate:            (chuckles).

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Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

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Stunned by a Conversation

You might think that by now nothing Kate does could surprise me, but a conversation she had with her sitter yesterday did just that. A few times Mary has mentioned that Kate has been talkative, but this was the first time I was home to get a better idea. I was stunned, not that she was talkative but that she controlled the conversation so well.

Since Kate normally wants to rest after lunch, I assumed that she might nap after Mary arrived. That proved to be wrong. The two of them began to talk as I went to the kitchen to work on my computer. I could hear their voices but wasn’t able to understand what they were saying.

I watched a video of a lecture at the Chautauqua Institution. When it ended an hour later, they were still talking. Kate was clearly taking the lead. The way she asked her questions wasn’t just like they were two friends in conversation. It reminded me of a sympathetic journalist conducting a conversational interview, giving her own thoughts about the issues they discussed.

Twice I walked close to the doorway to get a better idea of what they were saying. I heard Kate ask her about her husband and their relationship. She also talked about our relationship. Kate raised the issue of values, and that led to an exchange over relationships with other people. At one point, Kate asked her about her church. I have no idea what else they discussed, but the total time they talked was an hour and fifty minutes.

I didn’t listen long. It was still hard to follow everything they were saying, but I was struck by Kate’s command of the conversation. She would ask Mary a question, listen to her answer, ask follow-up questions and then express her own thoughts. Kate and I have had a number of somewhat similar conversations. During those, Kate has done the talking, and I was a facilitator. In addition, much of what she has said to me was based on a delusion. Yesterday’s conversation was back and forth more like two friends having a pleasant conversation rooted in reality rather than a delusion. I suspect a person overhearing it might not have recognized that she has Alzheimer’s and certainly not in the last stage. It took me by surprise. I wish I could have heard more clearly. I know she stumbles over her words when she talks. She must have done that, but I didn’t detect any sign of it.

It made me think about the difference in the relationship that she and I have compared to her and Mary. Our relationship is dominated by my role as a caregiver. She looks to me as the person in charge who has the answers to her questions and knows what to do when she is in doubt. It may seem strange, but I think she sees Mary as more of a friend than a caregiver. I like that.

To use an old expression, to me that makes Mary “worth her weight in gold.” Kate no longer has any close friends. They have either died or moved out of town. We get together with other people (at least until covid came along), but couple relationships can be quite different than getting together with a close friend. It is harder for Kate to play a significant role in group conversation. Part of that is because I am more of talkative than she is and generally take the lead. Along with that, Kate looks to me to do just that because it takes the load off her.

I have seen a number of other situations in which Kate has been able to converse easily with another person. She handles herself well and did that with Mary yesterday. She is not always in the mood to talk. It’s been almost three years since Mary became her Wednesday/Friday sitter. To the best of my knowledge yesterday was one of only a handful of times when that coincided with Mary’s being here, but I hope she will have more conversations like this in the future.