Making a Recovery and Two Very “Happy Moments”

Kate is still a long way from a full recovery from COVID, but I’ve been encouraged by her progress over the past two days. Although she is still not out of bed, she is somewhat more accepting of the efforts of the caregivers to change her and move her in any way. Changing her is one thing with which I am still helping. We have found that my getting in bed with her and asking her to hold my hands seems to give her added security. Except for the actual move to her side and back again, she has been calm.

I will say, however, that changing her and the mattress pads (chucks) is no easy task even with my help. I continue to be struck by the little things that the caregivers know to get the job done. I would not have believed that they could change the bed sheets while Kate is lying on them if I hadn’t seen it for myself. Were it not for Kate’s strong resistance to being moved, it would be even easier.

She is eating more now, and her “plumbing” is working as it should. It took two attempts, but Senokot did the trick. In addition, crushing her meds has made pill time a breeze.

We are still dealing with a problem that occurred while she was in the hospital. I wasn’t with her during that time, but the reports of her behavior and what I have observed at home with all the new caregivers tell me that she has been traumatized by not having any idea of who these people are and why they are “pushing her around” so much.

That leads me to tell you about two very “Happy Moments” we had last night and the night before. For years now, our evenings together have been the most predictably good times of the entire day. I’ve always attributed that to the relaxed nature of our activities after dinner and ending when we go to sleep; however, the contrast between our days and nights has never been as great as it has been since she came home from the hospital. It was quite dramatic the past two nights.

During both afternoons, I played YouTube videos of Christmas music. Several of them were full concerts. Two nights ago we watched “Christmas in Vienna 2018”. That brought back a pleasant memory of December 2008 when Kate and I were in Vienna and attended a live performance of this annual Christmas program. I think Kate enjoyed the video as much as I did. She was happy, and so was I.

Last night, I watched the evening news after dinner while Kate rested. Then I got in bed with her and turned on YouTube again. Kate was exactly like her old self. She was fully at ease, and we were able to talk periodically, generally about our relationship and how good it was to be together. Last night, she introduced this conversation by saying, “I’m so glad you are here.” I interpreted that as a response to all the time she has spent with the caregivers during the day. I think it also makes a difference that she has had at least five or six new caregivers and only one who has cared for her in the past. She has been with us for over three years. Both nights, I ended our evening by reading (you guessed it) The Velveteen Rabbit. She was especially moved by it last night and expressed her pleasure throughout.

Before reading the book, I went back to YouTube and turned on a fireplace video. I’m not sure what motivated me to do that. I know that I had learned about them years ago, but it never seemed like something we might enjoy. It may have been the Christmas music we had enjoyed so much combined with Kate’s joyful mood. It was very much like a Christmas evening we might have had long before Alzheimer’s.

When I finished reading, I decided not to turn off the “fireplace,” and we watched the fire and listened to my favorite album of Christmas music sung by Chanticleer. Kate loved the fire. It actually created a slight glow in the room with the lights out. We talked another 15-20 minutes before calling it an evening, but they were special moments.

Moments like these are encouraging to me. They remind me of something that has been true over the entire course of Kate’s Alzheimer’s. She has gradually lost more and more of her abilities over time. That has been especially true in the past 6-8 months. With each loss, however, we’ve experienced moments like the past two nights. We don’t know, and have never known, exactly what lies ahead of us, but I am optimistic that we will continue to have moments like these. I might even try the YouTube Fireplace again. You can’t have too many tools in your toolbox.

Thanksgiving and the Day After

Because of the pandemic, I had expected our Thanksgiving would be different, but I had no idea that we would be so directly affected by COVID. As it turned out, however, it was a Thanksgiving for which I was truly grateful. Kate’s coming home from the hospital made all the difference in the world. The bonus was that she was much stronger than I expected and appeared quite rested.

I will say that her return didn’t go exactly the way I hoped. When I spoke with the doctor that morning (Wednesday), she said that Kate would probably leave around 3:00 or 3:30. I conveyed that to the agency. They said they would have someone at the house by 4:00. At first, I thought that might not give me as much time as I wanted to brief her before Kate’s arrival.

That turned out not to be a problem. At 4:30, I received a call from the hospital saying they were about to release her. It’s a 20-minute ride from the hospital to our house, so I was confident they would be here by 5:00 or shortly thereafter. She didn’t arrive until 7:30. The CNA was scheduled to leave at 7:00 but stayed until 8:00. My uneasiness about Kate’s getting home so much later than expected was immediately forgotten when I saw her.

Once she was in bed. I played YouTube videos that she enjoyed until after I had showered and was ready for bed. It was a lot like our lives before she left for the hospital.

Thanksgiving morning she was awake at 8:30 while I was in the middle of my morning walk. I went to the bedroom and found that she wanted to rest a little longer, so I finished my morning walk. Then I went to the bedroom where I spent the next two hours with her until 11:00 when the  CNA arrived.

Although Kate had met her the night before, I reintroduced her. Kate received her as she would a guest in the house. I told her that I thought we would need more help now and that Tisha was a nurse whom I had asked to be with us while she was recovering from her stay in the hospital. She accepted that without question and agreed that we would need the help. I don’t think, however, that she really had any concept of why Tisha was here.

I was especially pleased when we were able to get her out of bed about 1:30. By this time, she was tired and back in bed before 2:30. We put her back to bed where she remained the balance of the day.

She didn’t sleep much, however. She dosed a little but was awake in bed most of the afternoon. I thought she would go to sleep easily that night, but she was concerned about something she need to do and wanted me to help her. I could never understand what she was talking about, but her concern lasted a good thirty minutes or more. I took the approach of simply comforting her. I told her I would help her, and it might be better if we did that in the morning. I took her hand and told her I had missed her and was very happy to have her back with me. I talked about the fact we had been together so long that it didn’t feel right when we are apart, something with which she agreed. That conversation diverted her attention from whatever was disturbing her.

The next day (yesterday) she was wiped out. She rested the entire day except for those moments when Tisha changed her or tried to move her to a different position.

Two different nurses came by for intake interviews. One was from the new home care agency we are using. The other was from the Home Health agency. Apart from the information they gathered from me, they took Kate’s vitals. Neither was bothered by the fact that she was resting/sleeping so long and said we should let her rest through the day. Tisha and I did just that.

Kate was awake when Tisha left, and we spent a couple of hours watching opera videos on YouTube. It was a nice way to end the day. I was afraid that Kate would be awake all night, but that turned out not to be a problem. She went to sleep easily and slept through the night.

Today we have a new person who will be helping us. I hope she is as good as Tisha and that Kate will be awake a little more. As we’ve been doing, we’ll take it a step at a time and adjust accordingly.

A Day of Anticipation That Ended in Disappointment

Yesterday began with a meeting with the owner of the new (to us) agency that is providing the help this week and in the future. This will be in addition to the three days a week now covered by our current agency. We had a good meeting. I feel very comfortable with them. That is especially true after my interaction with three of his staff last week. He was here about an hour. During that time, I gave him background on Kate and showed him the key areas of the house with which he and his staff should be familiar. He had a CNA prepared to be at our house at noon, but we decided I should call him as soon as I heard that Kate was being released. The nurse and the CNA were to head to our house for a brief orientation and to be present to greet Kate upon her arrival.

In the meantime, that gave me time to make a few preparations. When Kate’s mother lived with us, we had bought a steel ramp that we used to make it easy for her CNAs to get her down the two steps from our family room to our patio. Her mother passed away in 2005. It has been stored in our garage since then. Although it is very heavy, I was able to slide it across the floor of the garage and lift it in place on the top of two steps into the house.

Word about Kate’s hospitalization had gotten around, and I received a number of phone calls and emails offering support. This is the first time I have ever been in this position. I quickly learned something that I had only thought of before when it was someone else in our position. Some people hesitate to call because they may catch me at a bad time. My personal feeling as a recipient of such calls is that they are welcomed. I did have to cut short two or three when I received a call from the hospital or someone else with whom I was coordinating Kate’s return. I found the conversations themselves to be therapeutic. They also filled my day as I was somewhat nervously, but eagerly, waiting to see Kate for the first time in six days.

Shortly after 3:00, I received a call from Kate’s doctor at the hospital. She began by telling me it was her first time to see Kate and was trying to get a clearer picture of her “baseline” before COVID. I filled her in on the fact that she had been declining recently but had been able to stand and walk and was eating well. I explained that COVID had pushed her over the edge, and she had been very weak.

Then she told me that one of the things they had been monitoring involved a measure of muscle tone or strength. I wasn’t too clear on this, but it related to her ability to walk.  The measure had gone up to 700 from 200. The doctor thought it might have something to do with hydration. Kate has been on an IV to keep her hydrated, but she pulled it out the night before. They want to try again and see if they can improve the numbers before releasing her. She went on to convey that she didn’t want my expectations to be too high for her immediate recovery.

This was a gut-wrenching way to end a day of anticipation of Kate’s being back home with me. Perhaps, I will get better news today.

Good News

I’ve made no secret of the fact that Kate and I have faced serious challenges during the past 10-12 days, but we are beginning to see rays of sunshine. My conversation with Kate on Sunday afternoon was one of those. Yesterday, I continued to see a few things falling in place that will ease our burden significantly.

Yesterday morning, I received a call from the new agency with which I have been arranging additional help for this week and in the future. They confirmed that they have someone who can be with us today through Friday and then again on Sunday while they continue to locate a person for Saturday. They will be here from noon until 8:00 p.m. each day. I chose that time period because those are the hours that Kate is usually awake. She rarely gets up before noon these days and is normally in bed by 7:30 or 8:00. As with so many other things we have faced, flexibility is essential. If this schedule doesn’t work out, I’ll change it. I also contacted our existing agency to increase from four hours each visit MWF to eight.

Of course, the best news is that Kate is coming home today. I suspect that will be this afternoon. They are supposed to call me regarding a time. She will be coming home by ambulance.

When I spoke with the hospital yesterday, they said they are recommending the full plate of services for Home Health Care paid by Medicare. I don’t know that Kate will need or qualify for all of them. We will learn about that after her assessment. I spoke with a representative yesterday. He is awaiting my call to tell him when Kate is coming home.

So, how am I feeling about all this? The truth is that I am hopeful and a little sad and apprehensive about what lies ahead. I want to think that Kate’s strength will eventually improve to her pre-COVID level, but I am not confident since she had been on a steep decline in the preceding weeks. The fact that she has been bedridden for nine days is of concern as well.

I am also uneasy about her overall mobility. Will this experience be the catalyst that makes her wheelchair bound? If so, that will be a dramatic adjustment for both of us. It would obviously make if more difficult for us to get out and about. That doesn’t mean we can’t do it. I see people in wheelchairs almost everywhere we go. If others can adapt to it, we will as well. I am confident of that.

Update on Our Recovery

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

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

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

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

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

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

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

Our First Crisis

As noted in a post last week, I have been having greater difficulty getting Kate out of bed for the past few weeks. That became a more serious issue this week and represents our first real crisis. Here’s the story.

Wednesday or Thursday of last week, I noticed Kate was coughing periodically. Then I felt the first signs of a sore throat Friday night. The next morning my throat was worse. I recalled that a sore throat was one of a number of symptoms of COVID. I decided to be tested and went to a nearby pharmacy that afternoon.

Sunday.

I felt better and began to think that I simply had a traditional sore throat. This reinforced my belief that it might not be COVID. I hadn’t had any other symptoms like fever, congestion, or any breathing difficulties.

Monday,

I was beginning to believe I was out of the woods, but I wasn’t able to get Kate out of bed.  I had already cancelled my help for Monday afternoon because we were on quarantine after getting the test.  She was very weak and couldn’t help herself, and I was unable to do it alone. I called 911 to send someone to the house to get her up, to the bathroom and back to bed.

Tuesday.

Tuesday I felt like I was recovering from a cold. I was encouraged, but I had to call 911 again for help getting Kate to the bathroom. It was late in the day when I received the news that I tested positive. That was a low blow that began a crisis that hasn’t been solved; however, I had already contacted her doctor on Monday and continued be in contact with them several times a day.

Given Kate’s weakness and that my problem getting her out of bed might worsen rather improve, I also contacted the agency that provides the regular help I have on Monday, Wednesday, and Friday. I asked if they could find someone to help on Tuesday and Thursday. They said they would  try.

Wednesday

I made an effort to get Kate up between 11:00 and noon. Once again, I could not get her out of bed. She was very weak but was able to speak clearly to me, something she wasn’t able to do the day before. Based on her doctor’s instructions, I had been checking to see if her breathing was labored. She was all right, but at 1:15, I thought she was breathing a little more heavily. I talked with the doctor’s nurse who listened and said she would get an opinion from the doctor who said to take her to the ER.

I called 911 to take her to the hospital. It was difficult even for the two ambulance attendants to transfer her from the bed to a wheelchair and finally to the cot in which she rode to the hospital. This process was painful for Kate and for me as well. It was awful to see how frightened she was to be hauled away by two strangers and having no idea what was happening and where she might be going. As they put her in the ambulance, I couldn’t help wondering if that might be the last time I would see her even though there were no life-threatening signs at the time. She certainly didn’t show any lessening of strength as she tried to fight.

That afternoon I called our agency to inform them of Kate’s diagnosis. That meant they will not provide any help for us next week. It will be Monday of the following week before they can send the regulars back and any added help for the other days.

At 6:00, I spoke with the doctor who had replaced the one on duty when she arrived. She told me that Kate’s vital signs including her breathing were normal. They had drawn a sample of blood and sent it to the lab and would know later if they found any problem. She also said they were going to send her to a Step Down unit or floor where she would be put on a heart monitor.

At 10:00, I spoke with the nurse in the Step Down unit. She confirmed that Kate was there and that she was resting comfortably.

I ended the day with serious concerns about what I would do for help when she returns home.

Thursday

At 6:00 that morning, I called to check on her. Fortunately, her nurse answered the phone. She told me Kate had eaten breakfast and had a bath. She also mentioned that Kate was enjoying the music they were playing for her on the TV. I was pleased to hear that because I hadn’t mentioned the importance of music to her.

During the morning, I placed phone calls to our current agency and the new agency that I am talking with. I got encouragement from the new agency and hoped to hear back before the end of the day if they might be able to help us.

I received a call from her Step Down nurse at 5:00 telling me they were transferring her to a new floor that should be her last room change. She also gave me the new room number as well as the phone number for the nurse’s station. This was just the kind of nurse a family member wants. She seemed informed on Kate and very compassionate toward Kate and to me. She didn’t make me feel I was intruding on her time to ask how Kate was doing.

At 9:45, I called the nurses’ station to make sure Kate was in her new room and how she was getting along. Her nurse said Kate was already in her room when she arrived at 7:30. Kate was very confused – didn’t know her name, where she was, and was hard to understand. I told her that was not new with COVID. I see that frequently. In a sense, she is at least somewhat confused all the time but not always to the same degree. She knew that Kate has Alzheimer’s but didn’t seem to know any more than that. I gave her a brief background so that she would be able to put in context the behavior she was observing.

Friday

I spoke with her again this morning before she left at 7:30. They gave her a light does of Atavan to control her agitation, and Kate slept well during the night. Last night, I began to wonder if they had all her medications. I had assumed so because Kate’s full medical records are available to the hospital, but things don’t always go the way they are supposed to. I was especially concerned because we have made several recent changes. The nurse asked me to call back later when the new shift had had time to be briefed do some of their initial duties after check in. I plan to do just that.

I feel I should comment on how I am feeling. The best general answer is that these have been the most stressful days since we began “Living with Alzheimer’s.” Nothing else that has happened over the past ten years compares. It isn’t simply my reaction to Kate’s having the virus. It is what she has had to go through to get help. She is frightened by many little things like the noise of ice dropping the ice making into a glass. Being hauled out of bed and being transferred from bed to the ambulance to the hospital and three different rooms with different people must have been traumatic for her.

Beyond that, the biggest problem I now face is what to do for her when she is released. Our agency will not provide care for her until 10 days after her diagnosis. That means no help at home next week. I am talking with another agency that looks like it may be willing to fill in, but finding additional help is a challenge for all home care agencies in our area.

I had a conversation with our daughter, Jesse, last night. She has offered to come from Virginia although she and I want to make sure that Kate and I are definitely free of the virus before she would do that. In the meantime, I have also spoken with the care coordinator at the hospital about options for Kate. We will be talking again soon, I hope.

The good news is Kate’s vital signs and blood work show nothing abnormal. It seems that both of us have mild cases. Her symptoms have been a cough and weakness. For her, weakness is the major problem. She had started this before the virus, but I feel the virus exacerbated her decline. Once she is well, she may be somewhat stronger, but I suspect that she may continue to weaken. There are some things we cannot avoid.

Kate’s overall decline has been more dramatic this year and has taken a more significant drop in recent months and even weeks. January will mark the tenth year since her diagnosis in 2011, and we had observed the first signs at least five years before that. We have been very fortunate to have lived so well despite her Alzheimer’s; however, neither of us was ignorant of this part of the journey. I am not happy to be where we are right now but very grateful for the joy we have experienced in the past. I also believe we will have more “Happy Moments” together in the future even though the remaining time is likely to be punctuated by more troubling experiences like this one.

 

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.

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.

Our First UTI Test

Two days ago, I called Kate’s doctor. I wanted to get her thoughts on Kate’s recent changes. I received a quick callback from the doctor’s nurse who said that we ought to test for a urinary tract infection. I am no expert on this subject but told her that it didn’t seem as though she had a UTI. Out of the past fourteen days Kate has had problems on only four days. The inconsistency made me think it might simply be a function of her Alzheimer’s. In addition, her delusions, although they might have been somewhat more frequent, were pretty much in line with the past. She made a point that I can easily understand. She said that symptoms can vary from one person to another. This is one of my mantras. I agreed to take them a urine sample that afternoon.

First thing yesterday morning, I received another call from the nurse informing me that the test was negative, so we can rule out the UTI. She also said the doctor had some time at 2:00 on Friday and would be happy to see Kate and me or just me if I would prefer. That’s a day for the sitter, and I would really like to have a conversation with the doctor without Kate’s presence. I’ll see her then. In the meantime, I think I will write a brief summary using this blog as a source and send it to her via our online portal. I have been using that for years to provide updates before each of Kate’s appointments. I don’t know how helpful that is, but I feel more comfortable that I will give her a better description of our situation in written form than I might do in a face-to-face conversation.

Yesterday went pretty well. Kate was still tired and didn’t want to get up in the morning. She was in a good mood. It took about thirty minutes, but I was successful in getting her up to join me for lunch. As she has done on a number of other occasions, she wanted to lie down again right after using the toilet and washing up. I reminded her that we were going to lunch. I started to help her dress when she wanted to lie down again. I didn’t stop her. We continued to talk for a few minutes before I mentioned that we would need to get ready for lunch. She got up willingly, and we were off.

She was uneasy on her feet walking through the house, down the steps to the garage, and from the car to the restaurant and back. I started investigating walkers yesterday although her inability to follow directions or to learn new things could be a handicap. That’s not to mention the fact that it has to be a walker suitable for someone who is unstable. I have serious doubts that she would be able to use one. This may seem strange to those who haven’t had much experience with someone with Alzheimer’s, but I am finding explanations for almost anything are challenging or impossible for her to grasp. For example, Kate is losing the ability to do simple things like using the toilet, brushing her teeth, where to put her napkin at a restaurant and many other things. She is very dependent on me for help with everything. There is no way I would trust her with a walker unless I were right with her every step of the way.

As usual, she rested immediately after returning from lunch. She was in her recliner when the sitter arrived. When I returned four hours later, she hadn’t moved. Fifteen minutes later, we went to dinner. She went to bed soon after we got home. She was tired and went to sleep. My own interpretation of her being so tired is that it is normal for late stage Alzheimer’s and not something for which we are going to find a solution. I am eager to talk with her doctor tomorrow.

The rest may have caught up with her because she was awake at 5:15 this morning. Her mind was blank. I heard her say, “Who are you?” I gave her my name and told her I was someone who could help her. This began a thirty-minute conversation that went back and forth with her asking the same questions and my giving the same answers. (Who are you? What do you do? Where am I? Do other people live here?) When I told her we were in our house, she wanted to know how we paid for it. That led to how we got money to live. It was particularly confusing for her when I told her we were both retired. The toughest question to answer was “Why don’t I remember any of this?” I told her she sometimes wakes up and doesn’t know anything. Then she goes back to sleep and is all right when she wakes up. Shortly after that she did fall asleep, and I got out of bed just after 6:00.

A few minutes after 7:00 I was about to take my walk when I heard her say something. I checked on her. She wanted to get up. She still didn’t know who I was or where she was. She just wanted to “get out of here.” She must have because she had been to the bathroom, dressed, and taken her pills before we left the house for Panera at 7:45.

An hour later, we were back at home where we started to look at one of her family photo books. We didn’t get beyond the cover photo when she said she was tired and wanted to rest. I’ll be eager to see if I have any problem getting her up for lunch. I am especially interested in getting there early so that we can get her back for a 1:30 hair appointment.

The Rest of the Story

As I finished my last post, I was seated in a chair beside our bed where Kate was resting. That was around 11:30. After that, I tried several other times to get her up without success. It was puzzling because she seemed so normal except that she wouldn’t get up. She was receptive when I said I wanted to take her to lunch, but each time she said she would like to rest a little longer.

I was finally successful just before 1:30; however, she was very unstable on her feet. I told her I thought we should go to a nearby urgent care center, but she was adamant about not going. I was able to get her to the family room where I put her in her recliner. Then I decided to call Kate’s brother’s wife who is a retired pharmacist. She has a good medical background and has been a caregiver for her two parents. That turned out to have been the best thing I could do. She mentioned that the symptoms I had observed were common among people who have been without food or liquids for an extended period of time. I immediately remembered problems my dad experienced with low blood sugar. That sounded like a plausible cause of the problem.

After the call, I opened a can of Dr. Pepper and poured it into a cup for her. I also gave her two breakfast bars and let her continue to rest. It wasn’t long before she began to perk up, but I wasn’t sure until she got up a little later when we left for dinner. She was still a bit unstable and wanted to hold onto me, but she didn’t show any signs of weakness as she had earlier.

She had a good dinner and ate everything on her plate. We came home where I put on YouTube videos and played them over two hours before she got to bed. The videos kept her attention the whole time. It was very welcome experience after the morning and early afternoon. I felt a sense of relief when we were in bed.