Tender Moments

I have a Twitter friend whose wife has early onset Alzheimer’s. She is in memory care, and it is only recently that they have been able to get together. The other day he posted a video of the two of them as he read Love You Forever. As he read, she leaned over and kissed him (through her mask, of course). His tweet said, “Special moments are not always captured but this one was.”

This struck a chord with me because Kate and I have so many moments like this that go unrecorded. Sometimes I try to describe them, but my descriptions never fully convey the feelings of those moments. The past few days they seem to have been more frequent than usual.

Two days ago, I posted a tweet about one of those moments that occurred at lunch on Sunday. Only two other tables were occupied in a restaurant that seats over 200. While enjoying the quiet and comfort of having the restaurant almost all to ourselves, Kate said, “I want you to know how much I appreciate all that you do for me.” I said, “I do it because I love you.” She said, “I love you too. <pause> Who are you?” It was a very tender moment that some might have taken as sad, but it was a special time for both of us.

We had a similar, but longer, experience the next morning. Kate woke up early. I was only twenty minutes into my morning walk (inside the house for those of you who are new to this site). When I got to her bedside, she was sitting on the edge of the bed, her mind seemed to be a complete blank. She said, “What am I doing here?” I said, “This is your home. This is where you live.” It didn’t take long to tell that she didn’t know me and that she was in a deeper fog than usual; however, she wasn’t frightened as she is sometimes. She was just confused about where she was, who she was, and who I was.

I told her we had been friends in college and that I could help her. That didn’t totally reassure her, but I was able to take her to the bathroom without her having any reservations. Once there, she didn’t know what to do. I explained that she should take off her underwear and sit on the toilet. She was still a bit unsure of me and didn’t feel comfortable doing that. I was, however, able to get her to brush her teeth. She began to feel somewhat more at ease with me, and I took her back to the bedroom to get her dressed. She was a little hesitant to let me help but consented. Throughout the process she seemed to get more comfortable. Several times she asked who I was. I gave her my name and repeated that we had met in college and been together ever since.

I took her to the kitchen where I poured her a glass of apple juice, and she took her morning medicine without a problem. I also turned on a Barbra Streisand album and selected songs that I know she especially likes. She commented on how much she liked the apple juice. She seemed pretty much normal though she continued to periodically ask who I was.

I fixed her some cheese toast. She liked it and wanted more. The music was still playing when she finished eating. Streisand and Neil Diamond were singing “You Don’t Bring Me Flowers Anymore.” Kate had closed her eyes and was engrossed in the music. She even mouthed some of the words.

When the song ended, she opened her eyes. Something across the table caught her eye. She said, “This is a nice room.” (Most of the time, she doesn’t know she is in her own home and admires it as though she is visiting a friend’s house or staying in some type of commercial lodging.)

I said, “Beautiful things. Beautiful music. <pause> And beautiful feelings.” She looked at me, nodded, and repeated, “Beautiful feelings.” Then she extended her left hand to me. I put my right hand on hers. She put her right hand on mine, and I followed with my left hand on hers. We sat there quietly for 5-10 minutes without saying a word, just listening to the music.

Kate still had several small pieces of cheese toast on her plate. She asked if I could fix more and that we could share. I did. The music ended, and I put on another album that we have always liked. Then we sat quietly enjoying cheese toast and the music for another twenty minutes or so before adjourning to the family room. Before getting up, she said, “I feel better.” I said, “I do too.”

Did she know who I was? I don’t know. I doubt it. What is important is that we had shared a special moment together. As Kate’s care partner, I’ve read a good bit about caregiving. I’ve learned a lot though never enough. A number of things have seemed especially significant to me. One is the importance of living in the moment. Another is mindfulness. I think this particular experience is a good example of both. I try to take advantage of moments like this and am “mindful” of how much each of us cares for the other and that there is a limit on our time together.

The day began with a rocky start, but in a rather short period of time evolved to that tender moment. It wasn’t that I had done anything of great significance. That wasn’t necessary. I just helped her get ready for the day, served her a breakfast she enjoyed, played music I know she likes, and gave her time to feel at ease with me.

Issues with In-Home Care

It was almost exactly two years ago that I first engaged sitters for Kate. Except for a handful of exceptions, the schedule has remained the same – four hours a day Monday, Wednesday, and Friday afternoon. We’ve been fortunate to have few changes among the sitters themselves. One of them has been with us the entire time except for the first week or two. That has been especially helpful since, until recently, she came two afternoons a week. We’ve had three or four sitters for Monday, but two of them were with us less than a month. I believe the continuity has been beneficial for Kate.

The past few months have been different. We lost our Monday sitter the first of June. Fortunately, the person who replaced her was a woman who had been with us forty weeks during our first year and quit to take care of her own health issues. I was glad to have her back.

Then our Wednesday/Friday sitter gave up her Wednesdays. She has been in great demand by the agency. That has been especially true during the pandemic. She was moving into a new house with her mother. She needed a break, and I understood. It turned out the Monday sitter was able to take the Wednesday slot. That has worked well.

After that, I had my own mini-crisis with respect to my blood pressure that was no doubt related to the increasing stress of caring for Kate. That led me to make a few changes. One of those was to add a sitter for Thursday. At first, it looked like that might be a problem. When I talked with the agency, I learned that they have been impacted by the pandemic. They don’t have as many people who are willing to accept assignments, and it is more difficult to recruit new ones. As it turned out, they were to arrange for our Monday/Wednesday sitter to add Thursday as well.

Over the weekend, the agency called to say that she had injured her back and would not be able to come on Monday. They called back that morning and told me they could not locate anyone else who could. Unfortunately, that was my day for Rotary, so I missed that.

It was also a day when I had a 2:00 appointment with my ophthalmologist. That meant I would have to take Kate or find someone else to stay with her. At first, I thought I might take her with me. I have done that on other occasions; however, she is bothered by wearing a mask. It is a challenge for me to get her to wear one from our car to a restaurant. Knowing that we might be there over an hour, I preferred to leave her home.

That prompted me to call someone we had met through our music nights at Casa Bella. Last fall, she started a business providing services to seniors. I know someone who uses her as a driver, but she does a wide variety of other things. I put in a call to her. She was available and came to my rescue.

I know that Kate didn’t remember her, but she must have seemed familiar. We sat together many times over the past five years. At any rate, they got along well, and Kate didn’t object when I left. She was resting when I got home two hours later, but according to my friend, things had gone well. I am glad I called her. She is an appealing person in whom I have confidence. If I encounter another situation like this, I won’t hesitate to call her.

The question now is “Will the sitter who injured her back be able to return soon?” I have no idea nor does the agency. Yesterday afternoon, I received another call from the agency saying they had been unable to locate anyone for today or tomorrow and are working on a replacement for next Monday. In the meantime, I placed a call to my friend who is available if the agency is unsuccessful. I have a dental appointment a week from today and told the agency about it. I plan to call my friend today to see if she could be a backup for that day as well.

Suddenly, my rather stable in-home care arrangement is no longer stable.

An Experience I Couldn’t Handle

This morning I ran into a problem with Kate that had me stymied. She had just sat up after a short rest. I sat down beside her with the intent of looking at one of her photo books. It turned out that she believed she had to be someplace about that time. She said she was supposed to meet a group of women at her house. I didn’t think much of it because I am usually able to distract her so that she forgets whatever she has imagined.

This time was different. She thought she was running late and had promised “people” she would be there. Knowing that she didn’t have any obligations, I told her I didn’t think her meeting was today but tomorrow. If she accepted that, I was confident the whole issue would have been forgotten; however, she was sure that she was right. It was about time for lunch, so I suggested we order a takeout lunch and then I would take her to her house. She was fine with that and off we went.

On the way, she forgot that we were going to pick up our lunch. She became increasingly worried about being late. I assured her we would go directly to her home after getting our lunch. When we arrived, she didn’t recognize our house as hers. I mentioned that she might be thinking of her house in Fort Worth. She was adamant that I was wrong. I said, “I do remember that you have a meeting tomorrow, but I didn’t know about the one today.” She remained sure that it was today.

I told her we had lived in the present house for twenty-three years but that we had lived in two other houses in Knoxville before that and suggested she might be thinking of one of those. I added that other people were living in both of those.

She was almost in tears as we ate our lunch. She told me that she didn’t know what to do. I told her I wanted to help her but was in the same boat. I didn’t know what to do. Then she surprised me by saying, “It’s not your fault. You are trying to help me.”

Again, she asked if I would take her home. It was only thirty minutes before the sitter was to come, and I hesitated leaving but told her I would take her. I drove her by each of our previous homes. Fortunately, one was just around the corner and the other only two miles away. She didn’t recognize either one as her home.

She began to calm down as we drove. By the time we returned home, she was fine. The sitter arrived shortly thereafter. When we saw her, I said, “Look who’s here. It’s Mary.” Kate beamed and greeted her. They began chatting, and I got my things together and went to my office. She had suffered for almost two hours, but the crisis was over. I think the only thing I did that was helpful was to convey my desire to help her. None of my specific efforts to solve her problem was successful.

Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.

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.

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.

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.

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.

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.

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.