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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.

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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.

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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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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.

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Anxiety: Mine, Not Kate’s: Part 1

Some of you may have noticed that I’ve been quiet over the past week. I usually blame that on being busy, but that is only a part of the reason this time. Let me explain.

I should preface the story by saying that as an adult, I have been attentive to my health and wellbeing. As early as my freshman year in college, I was active in the gym. At that time, I was into weightlifting. I bulked up to 198 pounds, but muscle accounted for a lot of that. I put exercise aside the rest of undergraduate and graduate school. That extended another 5-7 years when I launched a 10-year career teaching college.

During my first two years, I felt that college teaching was not the best fit for me. Finding something else that was more to my liking and talents required time and effort. That proved to be stressful. I took up running. I continued that for about 10-15 years before having some hip trouble. Then I took up walking. Once my business was going in the mid-80s, I joined the Y and have continued to the present time.

I didn’t give a lot of thought to what I eat until Kate was pregnant with our first child. She had gestational diabetes. Her doctor put her on a high protein diet. I went on it with her. Since then I have been more careful about what I eat. Over the years, my waist had grown, but my weight has gone down. I am almost 30 pounds lighter than I was during my senior year in high school.

I mention all this to say that I take my health seriously. It’s one of my OCD tendencies. I am also very sensitive to the impact that caregiving has on one’s health. During the 9 ½ years since Kate’s diagnosis, I have made numerous changes to minimize or reduce stress. Notable examples would be reducing, then ceasing, travel and engaging the help of sitters for Kate three afternoons a week. Another big step was making a commitment to move to a continuing care retirement community the first part of 2021.

Over the past year, Kate has required much more of my time than before. That has been especially true since sheltering in place. These things have clearly raised my level of stress.

That brings me to the past week. Three weeks ago, I had a routine telemedicine appointment with my doctor. He mentioned that I ought to take my blood pressure readings periodically. I didn’t get around to it; however, last Wednesday, I felt under more stress than usual. That made me think about my blood pressure. Although I have been a regular blood donor and then a platelet donor, I hadn’t taken it at home in years. I located my BP monitor that night.

The next morning, I had that same feeling as I walked from the bedroom to the kitchen to get my breakfast. I took by blood pressure. It was about 135/85. That may not be high in general, but it was most unusual for me. I have been on BP medication for ten years or more and my readings have always been about 110-120/70-80.

I ate breakfast and then took my regular morning walk. I walked 50 minutes and took my BP again. It was about the same. By 11:20, I had taken several other measures, all were within normal levels.

Then I went to the bedroom to get Kate up. She didn’t want to get up. I got in bed with her and remained with her for almost 40 minutes. She still didn’t want to get up.

When I got up, I took another reading. This time it had jumped back to 138/85. I relaxed in Kate’s recliner and played some soft music. That dropped the reading to 118/78. I took seven other readings between 12:30 and 7:30. They were all normal.

Friday morning before breakfast, my BP was 151/78. That got my attention. That made me wonder if I might be in the early stage of a heart attack. I thought about the symptoms I could remember. I didn’t seem to have any of them. I went to the computer to look for others.

I still didn’t have any of the signs of a heart issue; nevertheless, I started to think about going to the hospital to be checked. Then I thought about Kate. I knew hospitals had not been allowing family members to be with the patient. I also knew that I couldn’t leave Kate alone. I called the agency that provides our sitters and asked if they would have someone right away. The regular sitter was scheduled for 1:00. They were stretched thin and couldn’t get anyone.

I also remembered that when you go to the cardiac emergency room, they keep you a minimum of six hours and want you to stay overnight. I asked the agency about someone for the weekend just in case. Then I called a friend to see if she could come over if I needed her. She was willing to do that. It turned out, however, that she was able to offer a better perspective on the situation. I should say that she is well-informed about health issues because of her work with the hospital. In addition, her mother cared for her own husband with dementia. I shared by BP readings with her, and she said she thought it looked more like anxiety caused by stress than an impending heart attack but said it would be better to hear that from my doc. I had already left a message at his office.

When I spoke with the doctor’s nurse, she said the doctor’s interpretation was the same as my friends. I felt the same way but also felt I should err on the side of caution concerning a possible heart attack. I scheduled another telemedicine appointment with the doc for the following Wednesday.

In the meantime, the agency was able to contact the sitter and asked her to come early. I had trouble getting Kate up and was concerned about leaving her but planned to do it anyway. I decided to take the afternoon to myself. I ran several errands. I spent the rest of the afternoon at my office relaxing, not working. I watched an interesting lecture and conversation with a couple who are Buddhists. It came at a good time for me in that I was trying to do exactly what they were recommending – living in the moment. As Kate has declined, I have been spending much more time thinking about the future and plans for our move. After returning home, my BP was normal the rest of the day. I felt much better when I went to bed that night.

However, that isn’t the end of the story. This is already a long post. I’ll save that for my next one.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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