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A Bump in the Road

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

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

Many people use the word “journey” when talking about Alzheimer’s and other dementias. I sometimes hesitate to use the term because it seems trite. On the other hand, it really captures a relevant aspect of “Living with Alzheimer’s.” It connotes something that is long in duration and involves a variety of experiences. How apt that is in our case.

Like so many other aspects of life, there are things we expect and those that surprise us. This past Monday we got a surprise, one that potentially may have lasting consequences. Kate had a mild stroke.

We almost always have good nights. That was true Sunday night. We spent the evening watching YouTube videos. A lot of them were choral favorites like “Danny Boy” and “Shenandoah.”

We had a very nice Monday morning as well. She awoke around 8:00, and I spent almost the entire morning beside her in bed. I turned on an assortment of YouTube videos focusing mostly on Broadway favorites. She wasn’t talkative. That’s normal at that time of day, but it was obvious that she was enjoying the music. Several times she commented that it was “wonderful.” I told her how much I enjoyed being with her. She indicated the same to me. Off and on we held hands. The day was off to a good start.

Not long before the caregiver arrived, she went back to sleep, and I went to Rotary. The caregiver let her sleep until 1:00 when she got her up and gave her something to eat. She said that Kate didn’t finish her meal. She kept chewing but didn’t swallow.

After getting back from Rotary but before reaching our apartment, I received a call from an old college friend. When I walked in, I greeted Kate the way I usually do. She gave me a big smile, and I told her I would finish my call and come back to her. About twenty minutes later, I got down on my knees beside her recliner, enabling me to look directly into her eyes, and told her how glad I was to see her.

She didn’t say much, but she looked pleased that I was there. She smiled. As I continued to talk to her, she closed her eyes, and her breathing slowed down. I had a flashback to being with my father and Kate’s mother when they died. Kate looked the same way. I felt she was drifting away from me. I mentioned that to the caregiver. She had the same thought. I told the caregiver that I didn’t want to lose her, but it would be a beautiful way for her to leave me. The precious moments we had the night before and that morning passed through my mind, and I said, “I love you. I always have. I always will.” To me, it seemed like she was trying to respond, but nothing came out.

I called her doctor. His office is in the building next door, one of the advantages of being in this retirement community. He and his nurse came over. By this time, she was in a deep sleep, but her vitals were normal. He checked her eyes. They appeared all right. He lifted each arm and found that her right arm was completely limp while the left was normal. He said he couldn’t be sure but thought she had a stroke. He asked whether I wanted to take her to the hospital. We talked briefly. He and I agreed that it wouldn’t be good to put her through the hospital routine, so we kept her here.

She slept well except for two events, one around 9:30 when her breathing seemed labored. I called the doctor. I described what was going on and let him listen to her breathing. He didn’t think it was serious and suggested that I continue to let her rest. She fell asleep while we were talking. Around 11:30, she screamed and held her right hand against her stomach and then her chest. I felt her left arm. It was warm. I checked the right arm, and it was cold. I pulled the sheet and bedspread over her arm. I didn’t hear a sound after that until the next morning while I was in the bathroom getting ready for the day. She screamed again, but, whatever the cause, it was over before I got to her bedside.

The next morning the doctor returned to check on her. He didn’t notice anything new except that the muscles in her left arm were twitching. He didn’t say that indicated anything special, but I have since learned that this kind of reaction is not unusual for people who have had a stroke. That occurs when the damage to the brain occurs in the part that controls body movement. That might also explain the limpness in her right arm and the fact that her eyes tend to focus to her left.

I told him I felt this was might be a dramatic change in our lives. He acknowledged the likelihood of that though he stopped short of saying she wouldn’t recover. That’s what I expected him to say. He also said that we might observe periods of improvement mixed with more of what we are seeing now.

Since then, she’s been making a little progress each day. Until yesterday morning, she was asleep most of the time, waking periodically for just a few moments, but she has regained some of the strength in her right arm. For a period of time on Thursday, she was more alert although she didn’t speak. She is also eating and drinking much less than normal.

Yesterday (the fourth day since the stroke) was her best day by far. She was awake an hour at one stretch that morning. That’s the longest she had been awake since the stroke. She smiled more and laughed. She responded to several YouTube music videos, mouthing the words to “Battle Hymn of the Republic” with the Mormon Tabernacle Choir. She was especially animated during the chorus, clearly remembering the word “Glory” in “Glory, Glory, Hallelujah.”

She’s coming to life again. I know we may see some permanent damage. My biggest concern is her ability to speak. Aphasia was already a problem, something often experienced by people who have strokes. Still, I am hopeful we may eventually be able to get out for our afternoon ice cream as well as our nightly dinner in the dining room. At any rate, I think that’s a reasonable goal. Time will tell.

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Our Early Morning Experience

Early this morning I heard Kate whimpering. I asked what was bothering her. Our conversation went something like this and was repeated several times.

KATE:            “Where am I?”

RICHARD:    “You’re in our bed in our very own house in Knoxville.”

KATE:            “Thank God. <pause> Who are you?”

RICHARD:    “Richard Lee Creighton, and I am your husband.”

KATE:            (as if talking to herself) “That’s right. Where am I?”

RICHARD:    “You’re in your bed at home.”

KATE:            “What’s your name?”

RICHARD:    “Richard Creighton.”

KATE:            “I’m glad you’re with me. I feel safe when you’re with me.”

From this point she wanted to know the names of her mother and father, if we have children, and their names. Then she wanted to go to the bathroom and asked where it is. I asked if she wanted me to help her there. She did. I helped her up and walked her to the bathroom. As we walked, she said, “Are we in the hospital?” I said, “No, we’re at home. You’re going to be all right. I’ll make sure of that.” She said, “I’m glad you’re here. I feel safe with you.”

After she finished in the bathroom, I helped her back to bed. That began a repeat of the conversation above. She wanted to know where she was, who I was, and to hear about our children and grandchildren. She began to relax, and we both fell asleep.

I need to say that this experience was not exactly like the anxiety attacks she has had before. This one seemed more like a response to a bad dream. She began to feel relieved right away when I told her where she was and who I am. The anxiety attacks were more enduring. Her concern then was her state of mind. This time she seemed afraid of something that was happening to her. The fact that she asked if she were in a hospital and that she felt relief when I told her she was in her own home makes be think it had to have been a dream. This hasn’t happened often, but it has occurred several times over the past few years.

It is almost 9:30 right now, and she is still sleeping. I’ll probably see about waking her soon. If today is half as good as yesterday, it will be a terrific day.

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Bad Dreams

I don’t recall if I have ever mentioned Kate’s having any problems with dreams. This has not been a big issue, but there have been several occasions when she has had them. Last night was one of them. It was also the longest lasting one. It occurred just before 5:00. I tried to calm her immediately, and that did have some calming effect but didn’t stop it altogether. She was completely calm by 5:30. During that time, I periodically told her, “I am right here. You’re going to be all right.” I also gently stroked her back. When it first happened, I also told her she had had a bad dream and that she was all right. She said, “I know.” But she didn’t calm down fully; so I believe she was still half asleep. Apart from sounds that she was making, she was struggling with her arms and legs as though she might be fighting someone or trying to get away from someone who was holding her. It was no surprise that she didn’t recall a thing when she got up this morning around 8:00.

Over the past few years, she has had other similar “bad” dreams although they were short-lived. She has more frequently had “good” dreams in which she talked to whomever was in the dream with her. A few days ago, she had a dream in which she was talking to me. It was like she was awake except for what she was saying and doing. I first noticed it when she was touching my chest and saying numbers, for example, “ten, eleven, twelve, etc.” I didn’t say anything at first. Then I said something that was a response to something she had said. That started a pattern that involved her saying consecutive numbers, and using her finger on my chest like a pen or pencil to write the numbers as she spoke them. When she got to the end of a column (for example, numbers in the 20s), she would take her finger up to the level at this she had begun the previous column only it was to the right. She would then pick up where she had left off (for example, 30, 31, 32, etc.) At one point, she stopped and asked, “What do you want to do now?” I spoke the next number for the next column. We proceeded to do 2-3 more columns of numbers before we stopped.

The most typical good dream has involved her playing the role of librarian, her career. She was always talking to students, giving instructions on various things. I would say she has probably had as many as 5-10 of these.

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Moments of despair

How quickly things can change. After a lengthy period of joy and contentment (as expressed in my previous post), last night we hit a low point. About 5:00 Kate came into the kitchen where I was working on the computer. I could see immediately that she was wearing a sad face. I got up, walked over to her, and asked, “Bored?” (This is an increasingly common complaint.) She answered, “Bored and hungry.” I told her we could go to an early dinner and started to offer a few suggested places when she asked, “Would you take me to Chalupas?” This is her favorite Mexican restaurant. She seems to see it as a place of comfort. I am not sure whether it is just the food or the food and the general atmosphere of the place. We know the owner and almost all of the servers with whom I always engage in conversations in Spanish. She likes hearing me speak Spanish and likes the people there.

At any rate, I told her I would be glad to take her and said something like this. “You really like that place. This would be the third time we have eaten there in the past 7-8 days.” She said she hadn’t realized that and we could go some other place. I told her I would be glad to take her, but I wanted to get something different for myself. Then I told her I could just get a single cheese burrito and then have some V8 when I got back home. (This represents one of the challenges I have eating out with Kate. She loves carbs. In the past week we have eaten Mexican 3 times, pizza twice (2 nights in succession), pancakes for breakfast, ice cream at Marble Slab, and a bigger-than-usual meal with cheesecake at Casa Bella. I have gained 4 pounds in the last week and my stomach is feeling a little bloated; so I feel the need of something lighter than what she likes.

As we were walking out the door for the restaurant, she said, “I hate being so dependent on you.” Before getting to the car, she said, “I could live to be 90.” She seemed quite depressed. Although I tried to reassure her that I was happy to take care of her, this didn’t help. She perked up a little while at the restaurant, but her being dependent was clearly still on her mind. While we were in the car coming home, I suggested that we look for a movie on TV. Then I suggested watching “Doc Martin,” a BBC series that is available through Netflix. When we got home, I started thinking about something lighter and more upbeat and suggested we might find an old Andy Griffith or something similar. She liked that. I got on Netflix and search for Dick van Dyke and found it. We ended up watching 4 episodes, and she loved it; so did I. When we turned off the TV and went to bed, everything seemed all right. I was wrong. I heard her get up just after 11:00 and go into her office. In a few minutes, I went in and found her in the bed with the TV turned on to an old black-and-white movie. She has always found comfort in having the TV on when she is trying to go to sleep. She told me she couldn’t sleep, something very unusual these days. I asked if she wouldn’t like to come back to bed with me and that we could turn on the TV or listen to music. She chose music. It took a while for us to get back to sleep, but we did and slept until almost 7:00 this morning.

She wanted to go to Lowe’s for more plants. We did so around 9:00. Right now she is outside planting them. It is cooler this morning. I will let her stay out as long as she likes because I feel it is her therapy. Then we will go to lunch. I hope the depression goes away before evening.

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Meltdown and Recovery

This morning we leave Niagara-on-the-Lake for Chautauqua after a very pleasant 2-day stay. Everything had gone beautifully until last evening as we were preparing to go to dinner and a play. Here’s the story.

First, we had a big breakfast at our B&B finishing close to 10:00. When we came back to the room, Kate got back in the bed to rest a little while. She got up for us to meet Ellen Seacrest and her sister-in-law, Ann, for lunch at 12:15. That meant we ate lunch before our stomachs were ready for more food. After lunch, we. Went to a play at 2:00. When we got out after 4:00, we got ice cream. Then we came back to the room for Kate to rest a while before our dinner reservations at 6:30. She was stuffed and didn’t feel like eating, but we needed to eat before the play at 8:00.

As she was trying to find something to wear, I got up from my chair and my phone fell on the wooden floor. The noise frightened her, and she said something like, “Don’t do that.” I said, “I didn’t mean to do it.” Then she immediately broke down into tears and heavy breathing as if she were having what I call a panic attack. She told me she knew I would never scare her on purpose. She couldn’t stop crying and continued to breathe heavily. I tried to calm her down by putting my arms around her and holding her, but that didn’t seem to help. She went into the bathroom to put on her lipstick. I followed her and rubbed her back and started playing some soft music on my phone. As she continued to cry, she said, “my mind is going. The medicine is not working.” I held her tightly. She lay back down in to calm herself. She must have cried a total of 15 minutes. This was the biggest breakdown she has had.

For me this was a sign that she hasn’t deteriorated so much that she is unaware of her decline. I was moved by the anguish she expressed and couldn’t help thinking about how much of this she carries with her all the time without my being aware. If I can’t fully grasp the extent of her suffering, how could anyone else do so?

After she had calmed down and we prepared to leave, she commented that she was all right now, that she has just broken down. She went on to say that she thought that she normally is able to control herself better. Moments like this reinforce my efforts to avoid making her feel “not good” to quote a friend of mine. This is his advice for everyone in all situations. That is a special problem to avoid with Kate and, I believe, with other Alzheimer’s patients.

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Sweet memories but constant reminders

Wednesday night we got back from NYC. It was everything I had hoped it would be. We saw more shows than ever (5), 1 opera, a performance of Handel’s Messiah, and the new movie, Lincoln. We are treasuring the memories of such a special trip.

Back home, I see Kate dealing with the frustration of accomplishing things – mostly on the computer. Yesterday I could sense she was depressed which I took to be related to this frustration. When I got home from visiting Dad, I asked her what she would like to do for dinner. When I suggested one possibility would be to bring something in, she didn’t look excited. Then I said, “”How about going to Casa Bella?” This is one of our favorite restaurants in Knoxville? We almost always get the same thing, and it has come to be a comforting place when we are low as well as times when we are celebrating. She responded quickly saying, “”Could we?”

I told her I would like to go ahead and get my shower. She said she was ready but would continue working on the computer while I got ready. Her power cord is damaged again; so she was using mine. She has repeatedly has power cord problems because she uses the computer with the power cord plugged while lying in bed or sitting in a location where the cord is pulled. Within two months of getting the latest computer, we had to replace the piece in the computer into which you insert the plug as well as the power cord itself. We had done this on her previous computer as well. We have discussed why this is happening, and I have encouraged her not to use it that way. In addition, I bought her an iPad because I thought she could use in it instead of the computer, but she has not gravitated to the iPad. I think that is mostly because the bulk of what she does is making photo collages using Microsoft Publisher and Creative Memories, neither of which she has on the iPad.

This is all a preface to one of my failures in handling a situation last night. Just before we left and while she was working on the computer, I told her again that it was better not to use the power cord while seated on the sofa. (That is because it requires the cord’s being pulled to the side which can cause the same damage to my cord as to hers.) She said, “”I am trying to be super careful.” I answered softly but inappropriately, “If you were trying to be super careful, you wouldn’t be using the computer this way.” She then broke into tears and went to get her coat.” When she came back with her coat, we embraced and I told her I loved her. She said, “I just hate this; I can’t do anything right.”

We had a perfect evening at Casa Bella. We caught them on a very busy night, but we had good service, the veal piccata was better than usual, and we topped it off with white chocolate cheese cake. When we got home, she was tired and got into bed before I did. While I was brushing my teeth, I heard her, and asked if she were laughing or crying. She said, “”Crying.” I asked, “”Why?” She said, “”I don’t know.”

These are continuing signs that she is getting progressively worse, and she realizes what’s happening. One of the things that hurts me is that she keeps most of this to herself. I wish she were able to talk about it more, but I think it is not just to spare me but to protect herself. I suspect that she feels the more she dwells on her condition, the worse things are. She is really frightened.

Once again, events of yesterday reinforce the superficiality of social relationships. At noon yesterday, we had our Sunday school class Christmas lunch. She sat at the same table as our pastor. He has told me before that except for knowing from me that she has AD, he is unable to tell when he speaks with her. I suspect that even though they sat at the same table for more than an hour, he wouldn’t have been able to tell. On the other hand, I can see so many things that make it difficult for her to function effectively.

This makes me wonder how long we can keep this from our children. I really want them to know so that they can make the best of their relationship with her the way I have been able to do. At the same time, Kate does not want people to look at her as a patient. I will honor this desire until or unless the children begin to suspect. That could happen this summer when we spend a week together in Jackson Hole. If it doesn’t, this will be further evidence of how long someone with AD can keep it hidden from others.

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Another Instance of Getting Lost

I ended quickly on the last entry because Kate called and said she was in the parking lot and didn’t feel like coming in at the time. As planned in the earlier conversation, we went to Casa Bella. We had our usual veal piccata along with amaretto cheese cake for dessert. For extra measure I decided to try their pistachio gelato which was good but not nearly as good as the cheesecake.

It turns out that Kate got lost as I has suspected. She drove around a long time and finally called the hostess for her meeting that she wasn’t coming. She was clearly frustrated, and I am sure, though she didn’t say so, that she attributed the problem as related to her Alzheimer’s. I commented over lunch that we know that she is geographically-challenged and that we can work harder to relieve any frustrations in that area. I also noted the conversation we had had with her behavioral psychologist commented on how well she does with the verbal area and that that is something that will work in her favor going forward since so much of day-in-day-out social activity relies on such skills. I also said that she might put greater emphasis on making scrapbooks and albums for the grandchildren as this is something she enjoys and that the grandchildren will appreciate in later years.

Having time at lunch in a place that has been special to us was just the right thing. Not surprisingly, she had thought of suggesting Casa Bella herself. She was quite calm during lunch and left for home relaxed and ready to tackle the family album that she and her brother Ken have worked on for the past 4-5 months. During Ken and Virginia’s visit to Knoxville this past week, Ken and Kate were able to make a good bit of headway. It now looks like they are into the final editing. I think they are both beginning to see the end. My guess is that they may let it go sometime in the next 2-3 weeks.

Because of their visit, I haven’t written anything about our visit to talk with Lillian Walters, the social worker at Kate’s physician’s office. The visit went well. Nothing of special note came out of it. We did not schedule another visit but Kate said she would prefer to call when she felt the need. Kate later told me she was glad I had gone with her although nothing occurred that makes me think it is good for me to be there. She began by asking Kate how she was doing, and Kate hesitantly said she had her ups and downs. This surprised me because I would have said she has done remarkably well. At the same time I recognize there are times of frustration that occur. We talked with Lillian about her irritability. She suggested that Kate give herself permission to excuse herself for some of this and to organize her life to minimize frustration. We talked about my doing more things and how Kate feels about that. One thing in particular was taking over the checking accounts. Kate said that was fine with her.

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Feeling Down

Not much to report, but I have experienced a little anxiety yesterday and today. That coincides with Kate’s not having a good day yesterday. We went to Ruby Tuesday last night. It was Valentine’s Day, but we had been to the Valentine’s Ball Sunday as our celebration. We didn’t talk a lot about how she was doing, but after our meal, I said, “You didn’t have a good day today.” She acknowledged I was right but didn’t say it had been bad. I think we are both thinking about how long we are going to have while things are “normal.” We both know it hasn’t really been normal for a while. She has been frustrated over her forgetfulness a long time. I would guess it has been about 2 years. She hasn’t said so, but she may also be thinking about other things than forgetfulness – things like increasing frustration with doing everyday tasks, especially things on the computer, the TV, or the phones.

Tomorrow she has her behavioral evaluation with the psychologist. That is designed to determine how broad the effects of AD are. I have felt she has been unable to function effectively for at least a year if not longer. Again we haven’t exchanged this information, but I think we both fear that she is further along in her journey than we want to believe. One indication is that I mentioned our plans for our trip to Tanzania in January and said that I wouldn’t be booking the trip for a little while although I wanted to check what we need to do regarding any inoculations that are necessary. She said that was good because she wanted to hear what Dr. Reasoner has to say about the progression of her AD at her next appointment on March 2. This is coupled with her comment the other night that indicated she had a question about whether or not she would be able to make that trip.

I asked her last night if she felt I was hovering over her. She said I had not and that she would let me know if that occurred. I can’t say that I have felt like doing everything for her, but I have wanted to be with her and have been more willing to help her with things than I was before the diagnosis. I also sense a difference in her. She seems more willing to seek my help with things. It’s too early to be sure about this, but I know we each feel so dependent on the other because we can’t let others know about the diagnosis just yet. I keep wondering how long we will keep it to ourselves. It could be quite a while, especially if the disease progresses slowly as we hope it will.

On Sunday afternoon we had a brief conversation in which I mentioned some blogs written by people with AD. She said that was something she wouldn’t want to do; however, she could see herself journaling. I encouraged her and will follow up to see if she starts this. I think this could be good for her.

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Changing Moods

We both have expected ups and downs. We’ve gotten along for the past few days without dwelling on things. Yesterday, however, I detected Kate was down when I called her to see if she was going to her yoga class. When I got home, she was in bed in the small guest room. She insisted she was all right – just tired. She got up shortly and got ready for a reception in connection with this week’s symphony concert. When we got home, I asked her how she was getting along, and she said, “”Oh, all right.” I said that didn’t sound that all was well. She said she was anxious to get her behavior test done with Dr. Taylor and her follow-up meeting with Dr. Reasoner that she wanted me to attend. She is worried about how far along she is and what impact that has on doing things around the house, etc. I felt I didn’t handle this well. I suggested that as far as the house goes that we wouldn’t want to make any major investments just because of this stage of our lives, but that she could certainly do lots of little things. I reminded her that we also wanted to keep the house in good condition and replacing the slate in the atrium was something we definitely needed to do. I found that I was down a little this morning. I am influenced by her moods. When she’s not happy, I’m not happy. That was true before her diagnosis. She did not go to yoga yesterday, but she went this morning and said she was going to another class at 1:00 today. She likes yoga, and it makes her feel good. I am hoping she continues this.