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An Active Day With a Few Surprises

Kate continues to bounce from “knowing” me to “not knowing” me. Saturday she got up late. She didn’t know me and was suspicious of me. Sunday she recognized me immediately as her husband. Yesterday she was awake early (about 7:00) and didn’t recognize me. This time, however, she seemed perfectly comfortable with me as though we were very well-acquainted.

She asked my name several times including once at breakfast. Then she asked if I were married. Before answering, I asked if she were married. She said she wasn’t. I said, “I’m not either.” I asked if she wanted to be married. She shrugged and said, “Maybe sometime.”

After breakfast, we went to the family room where I planned for us to look at one of her family photo books, but she was tired and rested for close to an hour. Then she asked what she could do. I suggested that we look at one of her photo books. She responded very differently. She seemed a little uncertain about me and expressed hardly any interest in the photo book. We completed it, but she was never engaged. It seemed like she was irritated with me, but I couldn’t think of anything I might have done to cause it. I suspect her brain had made some critical changes while she rested. She didn’t want to look at anything else and wanted to rest again. I took her to her recliner where she rested again.

I’ve served on only one church committee during the past 3-4 years. It’s the one that calls members on their birthdays. While she rested, I made my birthday calls.  When I finished, she gave me a big smile and said, “You did that well.” She was in a completely different mood.

The sitter came at noon. She and Kate were just about to eat lunch when I left for Rotary. Kate was happy and didn’t show the slightest concern about my leaving.

When I returned about 3:45, I saw the two of them standing in the family room near the door to the kitchen where Kate appeared to be looking at her ceramic cat. I quickly discovered she was rather hyper though not agitated. The sitter said she had been walking all around the house and had been doing so for quite a while before I arrived.

This has happened a couple of times before when I have been with her. She walks around looking at everything with great interest. I continued to walk with her after the sitter left. I gave her my typical commentary. We spent at least another forty-five minutes looking around the entire house before taking a seat in the family room. She wasn’t tired, and we looked at her “Big Sister” album. Nothing seemed to ring a bell with her, but she was quite interested. We spent another thirty minutes with it before going to dinner.

We went to a nearby Mexican restaurant. On the way and during the meal, she spent a lot of time thanking me for taking care of her. She was sincere, but the way she expressed her appreciation was consistent with the hyper behavior that began while the sitter was with her.

She did something else that she has done a couple of other times at restaurants including this one. She wanted me to take pictures. First, she wanted our server to take our picture. Later in the meal, she asked me to take a picture of her. She asked me to wait while she got ready and began to create a little “food art” with her meal. This was very much like something she had done at home recently.

She began by taking some of the food off her plate and carefully placing it on the table. She also moved her sunglasses, napkin, and drink to places she thought were aesthetically pleasing. When I thought she was through, she took almost all of the food and placed it back on her plate. As we left, she wanted one more picture of herself.

When we got home, I played the other half of Sound of Music that we had started a couple of nights ago. Although she was in bed, she was more engaged than I have seen her in a long time.

She was still awake when I got in bed. I moved close to her as I always do. I quickly found that she didn’t recognize me. She told me her husband would be home soon and asked me to move away from her. Despite that, she seemed rather comfortable with my being there, just not that close. Not a typical way to end our day.

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“Knowing” and “Not Knowing” Me Experiences

I’ve found caregivers as well as friends attribute a special significance to those moments when our loved ones fail to remember us. The first time it occurs is especially noteworthy. I remember the first time my mom told me she didn’t have any family. I said, “What about your sons?” She said, “I don’t have any sons.” Looking back it may have been my first wake-up call as to how far along her dementia had progressed.

Surprisingly, I don’t recall exactly when I experienced that same moment with Kate. I know it was two or three years ago. I do recall that it was also a moment that signaled a new stage in the progression of her Alzheimer’s. There was certainly a touch of sadness, but not as much as one might guess. It was something I knew to expect. I just didn’t know exactly when it would happen. I also knew that because she didn’t know me at that time didn’t mean she wouldn’t know me at other times.

Since that moment, there has been a lot of variability in her knowing my name and our relationship. Sometimes she does; sometimes she doesn’t. I don’t test her, but I can often tell when she doesn’t. During the past year or so, she hasn’t known me by name or relationship most of the time. That is different now. It is not unusual for her to call me by name, but it usually occurs spontaneously, especially when she needs something. When she is talking to one of our sitters or the woman who cuts her hair, she often refers to me as “My Boy” or “My Guy” as well as “My Husband.” Sometimes she doesn’t recognize me, and asks me where I am using those same expressions.

As I have noted many times before, she almost always recognizes me as someone who is familiar to her and whom she trusts. That has been changing during the past few weeks or months. Yesterday was one of those days. Between 11:00 and 2:30 when I was finally able to get her out of bed, she didn’t know me at all. I believe that is why it took me so long to get her up. She didn’t recognize my face or my name. She didn’t look frightened, but she was suspicious of me. I should add that she didn’t know her own name. That, too, is very common. There is no way to be sure, but I think that most of the times when she doesn’t know my name she doesn’t know her own as well. It’s as though a switch has turned off in her brain and blocked all the signals for the people she has known best. That includes all of her family members including her parents.

After getting her up, she was perfectly comfortable letting me help her with toileting, showering, and getting dressed. Once out of the shower, she seemed to be less confused although tired. I got her dressed. Then she wanted to lie down on the bed. She rested about ten minutes. The rest of the day went well. I don’t know if she knew her name, or mine, or our relationship, but she responded to me as though she did.

When I got in bed last night, she said, “Who are you?” I gave her my name. She didn’t recognize it. Then she said, “Who am I?” I told her and said that we had met in college and been together since then. She didn’t challenge me. I said, “I’ve always liked you. In fact, I love you.” She held my hand and said, “Me, too.” I doubt that she knew my name or our relationship, but it was a nice way to end the day.

Addendum at 2:00 p.m.

Follow up to my earlier post

I heard Kate say, “Hey” just before 11:00 this morning. When I got to her bedside, she was about to sit up. I said, “I’m glad to see you, and I love that smile. You are very special to me.” She said, “I guess that’s how we’ve stayed married so long.”

I was surprised as this is a time when she is most likely to be confused and not remember me. Even on mornings when she responds to me as though she knows me, I don’t recall her ever saying something that so clearly indicates she knows our relationship. It was a very pleasant surprise. It was also a good indication of how she would feel getting ready for as well as going to and from lunch. She closed her eyes on the way home and is now resting on the sofa.

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We Still Have Very Special Moments.

These days I write more about the challenges that Kate and I have than at any other time over the past 9 ½ years. For that reason, I feel the need to emphasize that we continue to have joyful moments and even joyful days. One of those occurred yesterday. The day was highlighted by one of the best tours we have had of the main living areas of our house.

(For those of you who may be new to this site, Kate rarely recognizes the house as ours and never remembers her way around the house or anything -and I mean anything – in the various rooms. Periodically, I give her a tour of the family room, kitchen, living room and dining room. I do so with a patter that is somewhat like that of a tour guide taking note of things that were special purchases of ours as well as items from her parents’ home.)

I woke Kate around 11:00. Unlike the past two mornings, I was able to get her up and dressed quite easily. She was also cheerful though confused the way she usually is. We brought in a takeout lunch from a sandwich shop nearby. After eating, she wanted to rest and lay down on the sofa in our family room. An hour or so later, she started to sit up. I walked over to her. She said she wanted to walk “around.” I asked if she would like me to show her around.

She accepted my offer and we began with a few items on a shelves close to where she had been resting. There are four pie plates that we bought at a pottery in North Carolina when we lived there early in our marriage. I told her about our buying them and her using them for years afterward. They remain as a reminder of those days. She gave special attention to another item that is a salt-glazed pitcher that her father had bought as a gift for his mother. On the bottom Kate’ mother had pasted a typed note telling the story and her desire that it go to Kate and then to our daughter, Jesse. I shown her the vase and read the note quite a few times, but she was especially moved this time.

We went into the living room where I showed three chairs and a sofa that had belonged to her parents. She took great interest in everything, especially a collection of sixteen porcelain figures, each of which had been a gift from her father to her mother. Then I picked up a vase that had another note from her mother that said she had it as a gift from her father and wanted Kate to have it. She also delighted in a portrait of her mother when she was about fifteen.

I pointed out the chandelier in our dining room. It was also from her parents home. I told her there were two things I thought about when I looked at it. One is thinking about her parents shopping for just the right chandelier for the house they were building, I commented on how excited they must have been as they picked out everything for their new home. That was the one in which Kate spent most of her life from the time she was eight until we married. The second thing is that her mother was an outstanding cook and hostess. She entertained many family and friends over the years. I mentioned the names of all her aunts and uncles and some of their friends and told her I could envision their sitting around the dining room table under the light of that chandelier. At this point, I don’t think she can even recall those times when I tell her, but it gives her a good feeling.

She was tired before we reached the kitchen, and I took her to her recliner. There is a small table next to it and on the other side of the table is another chair, the one in which I usually sit. I took a seat there. That put me less than four feet away from her, but she said, “Can’t you sit by me?” I got another chair and put it right up against hers and took a seat. She was happy, and so was I.

In no time, she was asleep. She rested until time for dinner. After dinner, I had no trouble getting her ready for bed. She had been in a wonderful mood all day. It was a great day.

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The Sleep Issue Continues.

Yesterday was almost a rerun of Saturday though this time I was more successful in getting Kate up. There was another difference. On Saturday, she seemed to be all right. Yesterday she was disturbed and unable or unwilling to help me understand what was bothering her.

Around 11:00, I put on a Julie Andrews album of music from Broadway.  That didn’t have any impact although I may not have given it as much time as I should have, less than fifteen minutes. The end result was that she didn’t want to get up. Because she was disturbed, I shifted gears and brought in The Velveteen Rabbit. That calmed her, but she went back to sleep before I finished.

In the meantime, I received a call from the agency that provides our sitters. The sitter was running late. That meant I would be late to my Rotary meeting. I thought about cancelling but decided to be late to the meeting. The minute I hung up I felt that I made the wrong decision and called them back. Given Kate’s situation, I thought it would be better if I skipped the meeting altogether and see if I might get her up a little later.

I ordered lunch to be delivered by Panera. I let Kate rest while I ate lunch. Then I tried getting her up again about 12:30. She wasn’t interested. I decided she should at least have a little juice and one of her morning meds that has an uncomfortable side effect if it is skipped. She drank a little juice, but she refused her pill. She was quite angry. I knew then that getting her up was a lost cause for a while.

I returned to the bedroom about twenty minutes later with (you guessed it) The Velveteen Rabbit. I also took a couple of her photo books in case TVR let me down. She didn’t want me to read to her, but I told her I would like to read it myself (out loud, of course). She didn’t protest, but she closed her eyes and didn’t express any audible interest until after I was mid-way in the book. Then she began to make audible expressions that fit with what was happening in the story. That was a good sign. I forged ahead with some optimism.

She opened her eyes and kept them open through the end of the book. I said, “Thank you for letting me read that. It’s a nice story.” She nodded her agreement. I was developing some confidence, but I didn’t want to abruptly suggest she get up for lunch. I held back. Instead, I told her it was also nice to be able to share the story with her and went on to say that she was very special to me and how much I like our being together. I said, “I hope you feel the same way.” That enabled us to have a brief conversation about our feelings for each other. After a few minutes, I was able to get her up and dressed.

When we got to the family room, she stopped to look at some of the poinsettias that are thriving but now have mostly green leaves. Then she wanted to rest. She rested about thirty minutes before I asked if she would like something to eat. We spent the next hour at the kitchen table chatting while she ate. We followed that with one of our tours of the dining room and living room. She wanted to rest again and took her place on the sofa until it was time for dinner.

The rest of the day went well. We had a pleasant afternoon and evening. She was tired when she got in bed but didn’t go to sleep right away. She didn’t, however, encounter any uneasiness. She just rested while I played YouTube music videos for her. There was no need for TVR. I think she went to sleep soon after I got in bed. I know I did.

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A Day of Sleep

Saturday was a day that Kate slept/rested until almost 3:30. It was in the early spring of this year that she first stayed in bed so late. Since then, there have been 3-4 other days like that. She didn’t get out of bed until 5:15 one of those days. In addition, there have 5-10 days in which I thought she wasn’t going to get up, but I was successful in coaxing her.

On some of those occasions, she was scared of something she couldn’t identify while she seemed all right the other times. She just didn’t want to get up. Saturday was like the latter. In fact, she surprised me. When I tried to get her up around 11:00, she was awake and greeted me warmly. I told her I was glad to see her and wanted to take her to lunch. She smiled. She told me that sounded nice.

The problem occurred when I told her I had her clothes out and would help her up. She said, “In a little bit.” That didn’t sound good. When she says that, she doesn’t usually follow through. I told her I would let her rest a little longer and came back in fifteen minutes. It was clearer that she wasn’t going to get up. I tried several times over the next hour and a half and then gave up.

Close to 3:30, I returned to try again. She was awake and in a good mood. I had no problem getting her up, showered, and dressed. I had already decided we would have an early dinner, so I didn’t get her lunch. I gave her some juice and blueberries. Then we enjoyed our time together looking at her photo books.

She hasn’t been as interested in the YouTube music videos, so I tried something different  after returning home from dinner. It was early enough that I decided to put on a DVD of Sound of Music. She has responded to movies for a long time, but I thought it was worth a chance, especially because of the music. She lay flat on the bed with her eyes closed most of the time. She didn’t appear to be watching or paying attention, but she remained awake until the end. At one point, I asked if she was still watching and was prepared to turn it off. She wanted to continue. She went to sleep without a problem after that.

She apparently got enough sleep. The next morning she was up before 7:00.

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Making Changes to Deal with Stress

Before starting this post, I remembered that I had dealt with this topic almost a year ago It was instructive to read them again. I found them to fit with my more recent ones involving my blood pressure and stress.

At that time, I noted that my stress was increasing but felt it was lighter than that of many other caregivers. (I continue to believe that.) Then I commented on several factors that might explain why I felt that way. In addition, I outlined what I was doing for stress control.  (If you care to read them, go to  the “Archives” to the right of this post. Select 2019 and then September and scroll to September 1 and 2, “Thinking about Stress.)

Stress is a bigger issue now, and there is every reason to believe that the source is not going to diminish. The recent experience with my blood pressure suggests it is time to make a few changes. My own awareness of the stress the day before taking any BP readings was a clear sign of a problem. Then my overreaction to the readings themselves suggests not only the stress but my OCD tendency in action. As they say, “It’s time to pivot.”

In my previous post and quite a few others I have mentioned my “caregiver’s toolbox” of ways to the problems I confront with Kate. Except in the two posts mentioned above, I’ve said little about the “toolbox” I use to help me with my own problems. Until now, I haven’t had to search for any new tools.

One of those is joining a caregiver support group. I have always intended to join and one in particular appealed to me. It is one of a variety of activities sponsored by a local Alzheimer’s Café. I have been out there twice in the past 2-3 years, once by myself and once with Kate. I have also had several phone conversations with their director and one or two others on the staff. I have received their monthly newsletter since my first phone contact with them.

Until now, I hadn’t participated for two reasons. The primary reason was that I didn’t feel the need. My stress was minimal and quite manageable. Because of my prior and current experiences with dementia and caregiving, I didn’t have a special need to get information about caregiving per se. I did need social contact but was getting that in a variety of other ways. The second reason is that the times of their support groups and men’s coffee group didn’t fit my personal schedule nor that of our sitters.

My recent blood pressure episode and covid made a difference. My stress is greater, and the activities at the café are now via Zoom. That means I can connect right here at home. To be sure, it is not like being together physically, but it is a start.

One of the first things I did after meeting with my doctor about my blood pressure was to join the men’s coffee club. They meet in the morning the second and fourth Friday of each month. I met with them right away and will do so again next week. There were about eight of us. One other person also attended for the first time.

We had a good conversation. It is somewhat like a support group in that there were periodic references to dementia, caregiving, and our personal situations. That was particularly true in our introductions. Most of those attending were in the caregiving role now although one or two had already lost their spouses to dementia. The rest of the meeting was just a time to chat. The group has a leader who attempts to see that no one dominates.

On the whole, I enjoyed the people and will definitely be back next week unless it is one of those mornings when Kate is up early. That is likely to occur once in a while. Next Thursday I will have my first meeting with the support group. If it meets my expectations, I will continue it.

That leads me to another important step I’ve taken. I talked with the agency that provides our in-home care about adding another 4-hour shift on Thursday. That is up from the three afternoons a week we have had the past three years. We began this past Thursday, but the agency is short-handed because of covid; therefore, they don’t yet have anyone who can come regularly on that day. They are working on it and have arranged for the same person who came this week to come next week as well.

Joining the men’s group and support group as well as adding more in-home care is something that people often suggest to caregivers, but there is something else that has been at least as important for me if not more important. That involves how I manage my time. I’m making changes in that area as well. That will require a little more explanation. I’ll do that in another post.

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Four Good Days in a Row

Except for a few moments, Kate and I have had four good days in a row. She has been in a good humor. Saturday and Sunday she got up late but was not reluctant to get ready for the day. We had late lunches at the same restaurant both days. She rested part of each afternoon. Here are several of our notable experiences.

After getting home from lunch about 3:00 Sunday, she rested until about 5:00 when she began an extended conversation that started with “Who are you?” She wasn’t frightened. She just wanted to know my name. Early in our conversation she said something about her mother that evolved into a long “conversation” about young people and parents. It began by her saying something about things her mother taught her but soon she focused on young people who were beginning to get into trouble. This went on for at least 30 minutes during which time the emphasis shifted to ways she could help children stay out of trouble. It involved working not only with the children themselves but also with their parents. There were several things she wanted us to do together.

The only rough edge of the day came around bedtime. Everything was going well until she called me to her bedside and wanted my help but wouldn’t tell me what she wanted. She started running her fingers through her hair and said, “Think.” I said, “You want me to run my fingers through your hair.” She frowned. I told her I was going to take my shower and would return. Very sternly, She said, “You will come back.” It is not common for her to be as irritated with me as she was; however, it is common for her to believe I know what she wants without telling me. I think this arises from delusions she has had in which I was present.

After my shower, she had apparently forgotten what she wanted, but she asked me what she “should do now.” She said something about the other people. This is another frequent occurrence, especially after she goes to bed. I think that is a direct result of her getting in bed earlier than she used to and not being able to use her iPad. She really doesn’t have anything to do. I told her we were the only people here and that “they” would be here tomorrow. That didn’t help. Then I told her I wanted to read something to her and brought in The Velveteen Rabbit. As in previous readings, she was at ease when I finished and said she was sleepy and was soon asleep.

Monday and Tuesday were similar to the weekend except that Kate was up early both days. That meant I spent a little more time with her, but we had pleasant moments looking at photo books. On both days we took a break and sat close together on the sofa listening to music. It was unusual in that we hardy spoke a word. We simply enjoyed the music and being together.

Monday night after dinner, I put on some YouTube music for her. After 45 minutes, she wanted to know what she should be doing. I was concerned that I might be overdoing my reading of The Velveteen Rabbit, but I tried it anyway. It was close to a repeat of the previous nights. The difference was that after reading to her, I took my shower. Not long after I returned to the bedroom, she wanted to know what she could do. I read The Velveteen Rabbit again. She relaxed and went to sleep.

Yesterday afternoon, we had a special time listening to the music of the Kingston Trio and Peter, Paul and Mary. We sat on the sofa for almost an hour with my arm around her and her head on my shoulder . She didn’t go to sleep and seemed to be following the music. She frequently tapped her fingers on my leg in time with the music.

It is interesting that although we didn’t talk, she didn’t experience any delusions. That may have been because she was “living in the moment” and not letting her mind wander to other things. That was reinforced by an experience after the music. She was tired and rested on the sofa. Less than an hour later, she got up and was concerned about things she was supposed to be gathering to take someplace. This must have been a result of a dream she had had or simply that her brain was thinking about something she couldn’t convey to me. She wanted my help in finding things. We walked into the kitchen. Then she wanted to go outside. We walked around the back yard until she got too hot.

I suggested that she get back in the house and relax a bit. I took her to her recliner where she rested with her bear in her arms until it was time for dinner.

After being in bed about two hours, she asked what she should do. I told her I was about to come to bed, and I would read a bedtime story for both of us. She liked the idea. I read The Velveteen Rabbit again. I noticed that she seemed to be relaxing as I read. When I finished, she was already asleep.

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How Long Can The Velveteen Rabbit Last?

I know there is no end to the challenges that Kate and I experience. “Living with Alzheimer’s” isn’t something that gets easier along the way. I do wonder what will remain in my “caregiver’s toolbox” in the months ahead. My guided tours of our house with a focus on pictures of her parents and grandparents and other items from her parents’ home are no longer as effective as they were only a couple of months ago. I also find that I need to come up with new commentary related to the various family photo books in order to engage her attention.

Then there’s The Velveteen Rabbit. That something I haven’t relied on too heavily though it has come to the rescue 4-5 times over the past few days. She never gives any indication she has heard it before, but that’s true for other things that no longer have the same appeal. At the rate I am using it, I should soon find out how long it works. In the meantime, I’ll continue to pull it out when I feel the need.

That shouldn’t be long. Kate’s changes come about surprisingly quickly. One minute all is well, and the next she is disturbed about something. That happened two nights ago. The day had gone well and we had a nice takeout dinner. Then she was ready to go (home). We jumped in the car and drove for thirty minutes before getting home again. As usual, we went directly to the bathroom to brush teeth. That’s the first step in our nightly routine. She was in a good humor and brushing teeth was no problem. The next step is to take her nightly meds. That, too, went smoothly.

The final step is getting her out of her clothes and into her night clothes. That’s where I ran into a problem. It is pretty common for her to ask why she has to take off her clothes, but this time she simply got in bed with her clothes on. Not anticipating a problem, I told her I wanted to get her night clothes on before I took my shower. She said, “I’ll do it later.”  I knew that wouldn’t happen. In the first place, she wouldn’t know where to get what she needs or how to handle the nighttime underwear. I encouraged her to let me help her change for the night. She didn’t want any part of it. I saw immediately that it was going to be a losing cause. I backed away and told her I would take my shower. Each of us was annoyed by the other.

When I finished my shower, and as though I were going after my weapon for battle, I got The Velveteen Rabbit once again. When I got back, I said, “I thought it might be nice if we read a bedtime story.” Then I proceeded to read the book just as though we had never had the earlier clash. Like the past few readings, she didn’t show any sign of interest or approval when I started. By the end, however, she was a different person. At least for the time being, the Rabbit still works.

We talked a few moments about how much we both like the book. Then I said, “Well, it looks like it’s time for bed. I’ll be glad to help you change into your night clothes.” That was all it took (and, of course, TVR). It took no more than five minutes to get her changed and back in bed. Best of all, we were both in a good mood. That’s always a nice way to end the day.

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Challenges, and The Velveteen Rabbit

Recently, Kate has experienced more and longer periods during which she seems to sink deeper into her Alzheimer’s. The primary symptoms involve her being tired, not wanting to get up in the morning, confusion related to not knowing where she is, who she is, and who I am. Her response has been withdrawal and fewer moments of cheerfulness. She has continued to rely on me to help her, but there have also been times when she responds to me like I am a stranger she mistrusts. One night she was very suspicious of me when we went to bed. I don’t recall another that has happened.

During the past few days, there have been at least four specific instances in which she didn’t know “anything” and seemed frightened. One of those occurred when she didn’t want to get up for lunch. I tried several times. She declined each time, and I let her continue to rest in bed.

The last time was over an hour after my first try. When she refused again, I asked if she would like me to read to her. She didn’t. I told her there was something I wanted to read and asked if she minded if I read it. She shrugged. I went to the family room and got The Velveteen Rabbit (TVR). I started to read. She wasn’t interested. I continued to read, and as I did, I could tell that she was paying more attention. By the time, I reached the end, she was fully absorbed and touched. I said, “Isn’t that a nice story?” She agreed. We chatted briefly. She was very much at ease. Then I asked if I could help her up for lunch. She said yes.

The next night she got in bed shortly after dinner. She was still awake an hour and a half later. That is not unusual, but she me what she could do. I got TVR again and read it to her. It worked the same way it had the day before.

Yesterday morning, she was awake and ready to get up at 6:30. After breakfast we spent some time with one of her photo books before she was tired. She was asleep when the sitter arrived at noon. I decided not to wake her before I left for Rotary. That may have been a mistake. When I got home she was still resting on the sofa. The sitter told me Kate wouldn’t talk to her the entire time and didn’t want the sandwich I had ordered from Panera.

After the sitter left, she wasn’t especially happy to see me and appeared to look at me with suspicion. I told her I was glad to see her and that I would like to read something to her. She didn’t express any great desire, but she didn’t protest either. Once again, I picked up TVR. The effect was the same. We talked a few minutes about how much we like the book. Then it was time for dinner.

Last night, we had a repeat of the night before. She was in bed a good while before she wanted to know what she could do. I read TVR again. This time I wondered if it would have the same impact since I had just read it to her before dinner. That was not a problem. She was perfectly at ease when I finished. Was her memory any better? I don’t know. I didn’t test her. I only know that she was comforted and went to sleep.

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Subject: Anxiety: Mine, Not Kate’s: Part 2

When I wrote my previous post, I was feeling better psychologically because I could focus on the problem from the standpoint of caregiver stress rather than a cardiac issue. That meant I could exercise some measure of control over the situation and was comfortable with that.

I slept well through the night. The next day and night (Saturday) my readings continued to be normal. I was fine until 1:10 Monday morning. I woke up and went to the bathroom. As soon as I got back in bed, I realized this was one of those times I wasn’t going to drift back to sleep quickly. I felt very nervous. I went to the family room where I got in the recliner and took my BP. It was 161/91. That seemed a very significant jump, especially since I couldn’t identify any precipitating events that might account for it.

Even though it didn’t cause any harm, I did something I now know I shouldn’t have done without talking with my doctor. I took another tablet of my BP medication that I had taken not quite four hours earlier. I also took four aspirin (.81mg), something I had learned is fine when one suspects a possible heart attack. Having previously had success by simply relaxing in the recliner and listening to soft music, I decided to try that as well. Ten minutes later, my BP was 144/77, but it remained at approximately that level until I went back to bed at 3:15. I felt very nervous during the entire time as I grappled with the decision of going to the hospital or not. I decided not to go. That decision was based almost entirely thinking about what I would do with Kate.

Before fixing my breakfast at 6:10, I took another reading. It was 151/77. I was concerned again. I took another reading after breakfast at 7:00. It had dropped to 133/65. I felt better but continued to weigh the matter of a trip to the ER. That led me to prepare two pages of health/medical information that someone might need if I were incapacitated. I took a break at 7:50. My BP was 143/66. When I finished at 9:00, it was 139/73.

I decided to write a message to my doctor to send through his portal. That turned out to be stressful as I couldn’t remember the password, and the one I had stored was incorrect. I also ran into complications when I tried to reset the password. Ultimately, I decided to print it and hand deliver after Rotary. In the meantime, I tried to get Kate up before the sitter arrived at noon. I was unsuccessful. All this pushed the BP back to 146/84, and my heart rate was 79.

During the balance of the afternoon my BP fluctuated between 128/79 to 149/68. I was still uneasy about having another night like the one before. I called two friends who live nearby. They both agreed to be on call to stay with Kate should I decide to go to the hospital. I invited them over that evening so that I could show them where things are and provide other information that would be helpful. One has a daughter who is a nurse. She came along.

They spent about 45 minutes with me. The nurse asked me to tell my story and then take my BP. It was 146/86. We had a long discussion. To make a long story short, the nurse didn’t think my readings indicated a heart problem. More specifically, she said that if I were getting systolic readings over 170, she would have responded quite differently. Since my BP reached 161 only once, 151 twice, and the rest were a mixture from 111 to the mid-140s, she didn’t believe they looked so bad. In effect, she said, “You are over-reacting. Your problem is not likely to be your BP or your heart. It’s probably stress.”

When I heard that, I felt a release of tension almost immediately. I was very much at ease. That continued through the time I went to bed. I slept well. The next morning I took a 50-minute walk (inside the house, of course) and took another reading. The results were normal: 120/73, pulse 67.

Although everything was going well, I decided to keep the appointment with my primary care physician Wednesday afternoon. I wanted to talk in more detail with him about what happened and hear his opinion based on my records over the past fifteen years. His view was the same as that of the nurse and the friend with whom I had originally spoken. This was a matter of caregiver stress.

I considered that very good news. As I said earlier, I feel much more confident that I can do something to minimize, though not eliminate, my stress. It is now Saturday morning, over a week since my initial concern that became inflamed on Monday. My BP has been within normal ranges since my friends left the house Monday night.

As I reflect on the whole episode, I believe a number of factors were involved in my over-reaction. The most fundamental one was, indeed, the stress of caring for Kate. Although I have often had moments of frustration, this was the first time I had felt so tense. That led me to take my BP in the first place, something I hadn’t done in years since purchasing the monitor.

Beyond that, I haven’t thought much about my BP since the doctor originally put me on medication. That was a big psychological blow to me. Overall, I am a rather calm, easy-going person who has tried to take care of himself. I was wounded by having to rely on medication. A number of times since then, I have spoken with the doctor about discontinuing it because I was doing so well. Each time he has said that was because of the medication and told me I need to accept it and enjoy life.

Along with not thinking about my BP, I had never educated myself about normal fluctuations that occur. As a result, when I saw the first reading of 138/85, I was surprised and disturbed by it. I know now that it has probably been that high and higher during the normal course of a day even before Kate’s Alzheimer’s.

My OCD also plays a role. As in other aspects of my life, I want Kate to have the best care possible and that she is very dependent on me. I don’t want to look back and think that I should have done more to provide her the highest quality of life she can have while living with Alzheimer’s.

I have always recognized the importance of caring for myself. Maintaining my health is essential in order to properly care for Kate. From the point of her diagnosis 9 ½ years ago, I have done and still do many other things to minimize stress. Many of these were also things that Kate enjoys. That has given us many great moments together. Engaging sitters to be with Kate three afternoons a week and my decision to move to a continuing care retirement community are more clearly steps to help me.

But life is changing now. Kate continues her decline. That requires more of me than before, especially since sheltering in place. My experience with this faux-BP/cardiac problem has been an important sign that I need to consider other avenues to control stress.

Fortunately, I am aware of many options to achieve this objective. In addition, I have the willingness and wherewithal to draw upon them.

So, what’s next? I’ll talk about that in another post.