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.

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.

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.

Alzheimer’s Has Been Testing Me For The Past Two Days: Part 1

Preface

I wrote most of this post yesterday (Saturday). That was 24 hours after I started. My intention was to write a brief summary of a special time Kate and I had Friday morning. I dropped those plans when other things took precedence. Although the morning had gone very well, the day turned out to be most unusual and very challenging. Even more unusual, was that it marked two days in a row that Kate faced problems that were especially difficult for me to address. A lot has happened. I won’t do justice to what occurred, but here’s the story in two parts, starting with Thursday.

Kate got up early on Wednesday and didn’t rest as much as usual during the day. Thus, it was no surprise that I needed to wake her on Thursday. At 11:00, I played music to wake her up gradually. After 30 minutes, I went in to see if she was awake. She wasn’t. That is unusual. Normally, she would be relaxing in bed while the music plays.

When I spoke to her, she responded and seemed sleepy but not disturbed in any way. I sat down on the bed beside her and chatted with her a few minutes. I told her it was getting close to lunch time. She wasn’t interested and said she would get up “in a little while.” We didn’t have any immediate plans, so I told her I would check a little later.

I checked at noon and again at 1:30. She still did not want to get up. She had a hair appointment at 3:00, so I tried again at 2:00. Still no luck. This time she looked somewhat disturbed and said, “Shhh” when I spoke. She pointed to the ceiling and very softly said, “See them?” I nodded and hoped that she wouldn’t ask me about “them.” She didn’t.

I mentioned that she had a hair appointment. She wasn’t interested. It didn’t matter if I cancelled, but I thought it might help her to get up and out. I encouraged her to go but decided not to push her.

I left the room to cancel the appointment. When I returned, she still seemed a little disturbed. I got in bed with her and put my arm around her. I told her I was there to help her with anything she needed and that I would protect her. We were mostly silent for almost an hour before she spoke. She sounded more awake. I told her it was after 3:00 and wondered if she would like to get up. This time she agreed. She was at ease again.

I’m not sure I understand why. I do know that “things” in her brain are changing all the time. She can change very quickly. Typically, that happens after she rests. My own guess is that her mind wanders a lot and she begins to have delusions and/or hallucinations, some of which trouble her. In the case of not wanting to get up, being patient often works. Comforting her also helps to shift my role from being the bad guy who wants her to do something she doesn’t want to do to that of a partner who really cares and wants to help. There are still a lot of unsolved mysteries for someone caring for a loved one with dementia.

Something else unusual happened that day. As I was helping her dress, she mentioned that she was going to have a baby “tomorrow.” She often thinks of herself as a much younger single woman and mentions that she wants to have children someday, so I didn’t think much about it until she said something else a short time before going to dinner.

We were looking at a family photo book when she said, “Where is the baby?” Things like this always raise a question for me, “What do I say?” The reflexive answer is always “What baby?” or “We don’t have a baby.” I didn’t think they were appropriate. She obviously thought we had a baby. I saw her stuffed bear sitting in a chair a few feet from us and said, “Oh, he’s right there.”

When I do something like this, I am never certain that what I decided will work, but I felt my options were limited. This time I was successful. I brought the bear to her, and she took it in her arms and held it lovingly like a new mother holding her newborn. We spent the next 15 minutes talking about the baby. At one point, Kate spoke to her (the gender changes frequently) and said, “I love you.” Then she looked at me and said, “Did you hear that, she said, ‘I love you, too.’”

It was close to the time I planned for us to leave for dinner. When I mentioned that to Kate, she said, “What about the baby? I can’t leave her.” Then I dug myself a hole and climbed in. I told her I knew someone who could come over and pretended to make a phone call to him. I didn’t think this through but assumed she would forget before we left. Not so. For the next few minutes she waiting impatiently for his arrival. Then she got worried about leaving the baby. I told her he was a nurse with lots of experience, but she continued to be concerned.

My next attempt to address the situation was to tell her I could call him back and ask if he could meet us at the restaurant. She was fine with that. Once again, I depended on her inability to remember what we were going to do before getting to the restaurant.

She continued to hold the bear in her arms all the way to the restaurant and at least once or twice said something about our meeting the nurse. Fortunately, she completely forgot everything but her baby before we arrived. We got out of the car. She cuddled her bear in her arms, and we walked in.

The hostess took us to a table with just two chairs. I asked if she could bring us another just in case Kate wanted to put the bear in a chair while she ate. She brought one, but Kate continued to hold the bear in her arms. I wondered what she would do when the food arrived. I soon found out. She wanted to put the bear down but didn’t know where. I got up and took the bear and placed him in the third chair where she could see him. That worked. We had a good dinner. When we were through, I picked up the bear and gave him to her, and we walked out to the car. There were no more surprises that day.

(See the post above for Part 2.)

 

A Sad Moment to End our Day

The past few days have made me more aware of something many other caregivers  talk about. People with dementia can change quickly from one moment to the next. I frequently find myself caught off guard by Kate’s behavior. Take last night for example.

After spending most of the time sleeping or resting from Thursday night until getting up for dinner yesterday, she was in bed about 7:15 and asleep shortly after that. I was surprised when two hours later I heard her say, “Help me. Help me, please.” I told her I would. She repeated her pleas for help several times before I could get in bed.

After joining her in bed, I asked how I could help her. Her most common response is to say, “I don’t know.” Instead, she said, “I don’t know anything. Help me.” I told her I could help her and said, “First, do you know who I am?” She said, “What’s your name?” I told her and she repeated it but mispronounced it a couple of times. I coached her, and she got it right. Then I asked if she knew her own name. She didn’t. I said, “Your name is Kate.” She said, “Now let me say it.” She couldn’t remember it. I repeated her name twice. She repeated it successfully. For the next 15-20 minutes we repeatedly went over her name and mine. As soon as we finished one repetition, she wanted to go through it again. I wish I could capture the tone of her voice and how intent she was about trying to remember her name and mine. That is what made it so sad. She wanted to do something she simply could not do. The extent to which she was bothered is another example of her awareness that something is wrong with her. She was only successful a couple of times, and then it immediately followed my repeating the name. It was a powerful example of just how poor her short-term memory is, that is, virtually non-existent.

The only good news coming out of the experience is that she began to tire and wanted to go to sleep, and she as been all right today.

More on Kate and Sleep/Rest

Three months ago Kate wouldn’t get up on a day when the sitter was coming. She was still in bed when I left and also when I arrived home. It was about 4:15 when she finally got up.  There have been at least two other times she has slept until late in the afternoon, once until after 5:00. There have been several other days when she has not wanted to get up but ultimately agreed to do so.

When I tried to get her up yesterday, she was resistant. Pushing her never works, so I decided to let her rest a little more. After several unsuccessful attempts, I decided to encourage her. I told her I wanted to have lunch with her and hoped she would get up. That didn’t work at first, but, with a little coaxing, it did.

It was running close to the time for the sitter’s arrival. I put in an online delivery order from Panera. Kate was quiet but enjoyed her lunch. We were still eating when Mary arrived. When we finished, I took Kate in the family room and showed her several of her photo books she might enjoy. Then I prepared for a conference call.

While I was on the call, Kate went to sleep on the sofa and was still resting when Mary left. I went to the sofa and sat beside her. She continued to rest. I told her it was pizza night and asked if she would like to go with me to pick it up. I didn’t get a response. I decided to let her rest a few more minutes.

In fifteen minutes, I tried again without success. She responded the same way she has done when sleeping in the bed in the morning. She was good-natured and said, “I’ll get up in a few minutes.” The problem is that she never does.

I decided to cook lasagna. No, I didn’t make it. I bought it earlier in the week at a takeout place that has usually has two or three frozen dishes they prepare for times like these. Before eating, I asked if she would like to join me. She didn’t, so I went ahead. I fixed a salad (spinach and arugula with blueberries, tomatoes, and slivered almonds) to go with the lasagna. It was an unusually good meal.

After eating, I told Kate is was time to get ready for bed. She didn’t want to move and asked if she could sleep right there on the sofa. I told her that she needed to get to the bathroom and put on her night clothes and then it would be easier to get in bed. I was surprised when she agreed. She was in bed shortly after 7:30 and quickly went to sleep. She was asleep when I got in bed and slept through the night. I expected her to get up early this morning, but she didn’t make a sound when I got up. She is still sleeping at 9:15.

So, what’s going on? As so often happens, I don’t know. I know that it was a year ago that her sleep pattern began to change. Over that time, it has been less predictable than it was before that time. She has clearly been more tired than she used to be. During the past three months that has increased, especially in the past 3-4 weeks. She is not on her feet much before she wants to rest. That often occurs when I give her a tour of the house. She enjoys herself but gets worn out and wants to sit down. As I have speculated before, this may be a natural process as her body begins to shut down. Her doctor seems to think that might be it. Whatever it is, I suspect the fact that she has resisted any exercise must have exacerbated the problem. The good news is that she has not seemed disturbed or frightened. I am eager to see what happens today.

This Morning’s Surprise

I was asleep but felt Kate move. When I looked, she was seated on the edge of the bed. The clock read 4:52. I asked if she wanted to go to the bathroom and that I would help her. She said she didn’t. She stood up. I walked around to her and asked where she was going. She didn’t answer. I reached out my hand and said I would help her. She signaled with her hand to go in front of her. Still thinking she might want the bathroom, I turned in that direction. She wanted to leave the bedroom.

She led me down the hall way to the other bedrooms. She walked through each one and looked in the closets as well as things on dressers and tables. Two of the rooms have an adjoining bath. She went from the hallway into the first one, through the bath and into the next bedroom. She turned left into the hallway. When she came to the door of the door of the first bedroom, she entered it again. She went back through the bathroom into the second bedroom. Then she went into the family room and on to the kitchen turning lights on in each room.

When we stopped in the kitchen, I told her I wanted to help her. She started to whimper and said, “I wish you could.” I asked if she could tell me what the problem was. She couldn’t.

As we left the kitchen, I took her hand and led her to our bedroom. I stopped at her side of the bed. She sat down, and I suggested that we get back in bed. She was hesitant but got in and leaned against the backboard but not in a straight sitting position. She was still bothered by something.

I got in bed and had an idea. First, I put on an album of beautiful music by Joshua Bell.  I decided to try diverting her by getting her to help me. I told her I was a little keyed up and needed her help to relax. I moved close beside her, and she gently stroked by arm. Neither of us talked. She began to relax. It was almost an hour later when she began to fall asleep. I was about to get up when she asked if I could sit beside her and talk to her. Then she said, “You don’t even need to talk, just sit here with me.” I sat on the bed beside her for fifteen minutes. We didn’t say much though we did express our love for each other. She was very calm and relaxed. Finally, I told her I was thinking of getting dressed and asked if that would be all right. She said that was fine and sounded like she really meant it.

At 8:45, I had just finished my breakfast and was about to take my morning walk when I noticed that she had gotten out of bed again. I went to her and found her in a good humor, but it didn’t appear that she knew where she was. I told her I wanted to show her something. We went to the hallway where I showed her the picture of her mother. We didn’t linger as long as we usually do.

She wanted to move on. This time she walked to another bedroom. I can’t remember why, but I left her a moment. When I came back, she was in the closet. We use this one primarily for storage of games, photo albums, and miscellaneous stuff that we should probably gotten rid of long ago. I asked what she was doing. She said she was cleaning up. Most of what she had picked up to trash was just that, but some were things we might want to keep. I helped her sort them out.

I suggested we go back to our bedroom and get her dressed. She agreed. After she was dressed, she asked if she could lie down again. I told her that would be all right. That was about an hour and forty-five minutes ago. I think that’s good. That enabled me to take my walk and write this post. It is now approaching time for lunch. If she isn’t awake in the next thirty minutes, I’ll wake her. I’m optimistic that she will be fine, but I am used to surprises.

Our Busiest Day

From time to time, I’ve said I wish my memory would allow me to report more clearly the things that Kate and I experience while “Living with Alzheimer’s.” That has never been truer than the following account of what happened yesterday. The best I can do is to sketch what happened without the full details that would enable you to get a better feeling for what it was like.

It is unusual for Kate to get up during the night, but the day began at 1:00 a.m. when Kate said she wanted to go to the bathroom. We took care of that without any difficulty and returned to bedroom. I don’t think either of us was awake too long after that.

At 5:00, Kate was awake again and said, “What do we do now?” I told her it was early and that it would be good to go back to sleep. I think she did. I know I did and woke up for good about 6:15.

I had just finished combing my hair when she came to the bathroom door. She was looking for something. She had already gone to the hallway and family room just outside our bedroom and turned on the lights. I don’t remember what she said, but she had the impression that guests were coming to the house, and she needed to prepare for them. Typically, when she gets up, she is a little groggy. This time she seemed awake and on a mission.

I suggested that she use the toilet so long as she was there, and she agreed. Then she said, “What now?” I told her it was still early and that going back to bed would be a good idea. She was very compliant, and I got her back to bed. I went back to the bathroom to shave and then got dressed.

I had finished my breakfast and was about to take my walk when I heard her call. I went to the bedroom and found her ready to get up for the day. She was concerned about the guests who were coming and wanted to make sure the house was in order. I got her dressed and invited her to breakfast. I had a fruit muffin left over from our takeout meal the night before and heated it in the microwave for her. Although she said she was interested in joining me for breakfast, it was difficult to get her to the table. It was another example of the passive aggressive response she has given when I wanted her to get up, and she wanted to stay in bed. As she has done in those cases, she hears me but ignores me.

I heated her muffin in the microwave and invited her to the table. She said she was coming, but she didn’t come to the kitchen. Instead, she walked around the house looking over things to see if they were in order. She keeps some of the paper doilies she picks up from one of the restaurants we visit regularly on her dresser in our bedroom. Before leaving the bedroom, she meticulously rearranged them along with a hairbrush. She continued this effort in the family room and kitchen.

It took several requests before she sat down. I was both puzzled and frustrated that she didn’t come right away. Ultimately, she came, but she only ate a portion of her muffin and some sliced peaches.

From the time she got up, she was concerned about being ready for our guests. She didn’t seem to know anything about them. She repeatedly asked me their names and what time they were coming. I told her she had plenty of time as they weren’t coming for two or three hours. She expressed mild initial relief. Then she completely forgot and started her questions again.

Kate was much more talkative, and her aphasia was evident. I had great difficulty understanding much of what she said. That was true the entire day.

When it became clear that she was not going to finish her breakfast, I suggested we spend time together in the family room. I got her to take a seat beside me on the sofa and picked up her “Big Sister” album that her brother had given her two years ago. We spent a long time with it, and the distraction worked beautifully. She forgot about our guests and getting ready for their arrival.

Our daughter called while we were looking through the album. Kate talked a lot, and Jesse was able respond appropriately. By that, I mean that she only made facilitative responses to Kate’s sometime unintelligible comments. That kept Kate going. I was happy because Kate was enjoying herself.

It was soon time for lunch. I wanted something quick and easy and chose the Brunswick stew I had purchased late last week. We had a pleasant lunch, and she wanted to rest. I was surprised she hadn’t rested during the morning because she had gotten less sleep the night before and assumed she would rest a long time.

She didn’t rest long before she seemed wide awake. We spent more time with photo books. She was getting along quite well. I told her I wanted to show her something in the living room. I am beginning to sound like a tour guide, as I take her through all of the items that were in her parents’ home. I don’t think that was the key at all, but she was very moved by everything I showed her. It was a moving experience for her.

When we finished the tour, we sat on the sofa. She was very emotional and said, “I feel so good. I can’t remember having a day so good.” She repeated this with variations for a few minutes. It was a special moment for me as well. We still had time before dinner, and she was tired and wanted to rest.

I took that opportunity to get on my laptop and sit in a chair directly across from the sofa where she was resting. I wanted to write this post. I had a second thought and decided I would send an email to Jesse and Kevin to let them know that we were having such a good day. I also thought that would provide a good start for writing a blog post.

I didn’t get far before Kate was finishing her brief rest. That made me think about getting something for dinner. I told Kate I would be in the kitchen and would call her when it was ready. While I was in the kitchen, she got up and started wandering around the family room. She called to me. (Yes, she used my name and did so most of the day.) I found her attempting to disconnect the router. She had already unplugged the cable that powers her lift chair. I told her not to touch the router and attempted to explain while knowing she could not understand. This was a frustrating moment because I had been heating some bean soup that had overflowed on the stove top.

I went back to the kitchen. She called again. She was working on the router. I reminded her that she should not touch it. I left for the kitchen. As I was cleaning up the mess, she called again. She had forgotten about not touching the router. I reiterated how important it was to stay away from it and suggested she come into the kitchen with me.

She wanted to help me, but I couldn’t figure out anything useful for her to do. She wandered around the kitchen picking up things. I keep a stack of bills and other communication that deserve attention on my desk. She separated those and arrange them on the desk.

She was back in the family room when I put the food on the table and called her to dinner. She said she was coming but didn’t. I went to her and told her the food was ready, and she could join me. I went back to the table, but she didn’t come. I tried another time and she came.

She was very talkative. It began when she look at something across from her and thought it was a person. Some of her comments were addressed to her and some to me. She talked and talked, but she wasn’t eating. Her aphasia was active. I couldn’t understand much of what she said.

I began to think she might have a urinary tract infection (UTI). I called her doctor’s office. No one answered, not even the answering service. I tried to contact the nearest urgent care center. They had closed for the day. I called Virginia, Kate’s brother’s wife. She is a retired pharmacist with a good knowledge of health and medical issues. I wanted advice on how to proceed. She said she would probably go to a 24-hour urgent care center if one were available. I looked and didn’t find one in our area.

I went back to the table where Kate was still sitting quietly in front of her food. I decided to give her a breakfast bar. She was very calm, nothing like she had been minutes before. That made me think it was not a UTI but Alzheimer’s that was causing the problem.

I cleaned up, and we went back to the bedroom where I got her ready for bed. She had a little difficulty knowing what she should do next and understanding what I told her, but that is normal. She was in bed rather quickly, and I put on an Andre Rieu concert from Maastricht. She relaxed and listened to the music. Nothing eventful happened after that. When I got in bed a couple of hours later, she was either awake or I waked her. She was as loving an affectionate as usual.

It was quite a day. Kate was confused and busy all day. I didn’t get my walk. I didn’t check email. I didn’t write a blog post. The possibility of a UTI was disturbing on a Sunday evening. I have often said that when Kate is happy, I am happy. The converse is also true. We had quite a mixture of happy and disturbed yesterday. I was up with her, and I was down with her. On the other hand, a large part of the day was as good a day as it can be including the end of it. I am very grateful for those “Happy Moments.” They offset the difficulties encountered the rest of the day.