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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.

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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.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Anxiety: Mine, Not Kate’s: Part 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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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.

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Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

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Communication and Kate’s Health and Wellness

A week ago, a Twitter friend posted something that caught my attention. She emphasized how important it is that caregivers are mindful of the signs of health issues our caregivers experience as their communication skills deteriorate. That was relevant to me right now.

Among the many reasons that Kate and I have gotten along so well since her diagnosis is that neither of us has faced any other serious health problems. That has enabled me to give my full attention to her Alzheimer’s. When either of us has had colds, I have been more aware of how even that can impact our normal routine.

As my friend’s tweet suggests, my awareness of other health concerns is hampered by Kate’s inability to tell me anything about her symptoms. When she has had colds, I have always noticed before she did. Fortunately, neither of us has had many colds. Recently, however, she has encountered at least three new issues that concern me.

The one that has bothered me the most has been her eyesight. When she looks at her photo books, she often sees one person but fails to see the person next to her. It occurs frequently when there are three people. She sees the first person on the left. If I ask her who the next person is, she often skips the second person and goes to the third person. When she gets all the jigsaw pieces in place but one, she seems unable to see the blank spot where the last one goes. She walks to and from our car in a parking lot, much like a person who is blind. I know she isn’t, but she is very unsure of herself.

I have tried to get her to tell me what her vision is like and test her when we are at home, but she isn’t aware of a problem and/or can’t express what her experience is like. Since she has regular eye exams twice a year, I hadn’t been worried about any serious vision problems until recently. I attributed everything to her Alzheimer’s. Some of that seemed obvious to me. For example, I do know that some people find that people with dementia don’t want to walk on a black doormat because it is perceived as a hole in the floor. Kate is sensitive to contrasts in flooring or pavement. When she encounters them, she holds up a moment and wants to hold my hand. Last night as we left Bonefish Grill, she saw black spots on the sidewalk and asked if they were holes. That is probably related to her concern about color contrasts on pavement.

Yesterday I spoke with the nurse assistant to Kate’s ophthalmologist. I called to see if her doctor thought Kate’s vision problems could be something more serious, possibly macular degeneration. The doctor said it was unlikely since she had not seen any signs of that at the time of Kate’s last appointment five months ago. The next appointment is in three weeks. We decided to wait until then to see if there are other problems. The doctor thought Kate’s Alzheimer’s is to blame. I suspect she is right but will be eager to see if there is more that we should be concerned about.

Another problem is her hearing. That, too, is something that may be a result of her Alzheimer’s, but she has always had a problem with wax buildup in her ears. We have periodically had them flushed by a doctor. I have tried at home without much success. The last time they were flushed was about six months ago. We have an upcoming appointment with her doctor next week. They should take care of that for us. Kate has said almost nothing about a problem but did mention it within the past week. This is something else to which I need to be attentive.

The problem we may have the most difficult time addressing is her physical mobility. I think that is one that I may have to adjust to. Once again yesterday, she rested the balance of the afternoon (about three hours) after returning from lunch around 2:00. The good news is that she has gotten up earlier in the morning several times in the past couple of weeks. That enables us to get out of the house a little more. That is the only way she can get any exercise. We have an appointment with her doctor next week and will talk about that. I have already started a letter updating the doctor, so she will be prepared when we meet. I wonder how much of the problem is arthritis. It is interesting that she doesn’t complain of any pain; however, it sounds like she is in pain when she gets out of a chair or bed. When I ask directly whether she feels any pain, she says she doesn’t.

One thing that Kate is very aware of, but cannot explain to me, is a dental problem. She brushes her teeth a lot and also picks at her teeth. She feels like she has something caught between then. When I help her floss, I don’t see anything that should make her feel that way, and the flossing doesn’t solve the issue. She also rinses her mouth out multiple times when she brushes. She rinses, spits out, rinses, spits out, rinses, spits out. As she does this, it appears that there is something stuck in her mouth that she wants to get out but can’t. I have been giving her mouthwash to see if that might help. So far I’ve had no luck.

I wonder if this is related to her salivation issue that has never ceased since it started during the summer of 2016. She still does not swallow her saliva. She goes through a lot of paper napkins and paper towels. Often she wipes her mouth with her hands an wipes them on her clothes. That has had an effect on how often I wash. Both her doctor and dentist have suggested that she is bothered by what is a common problem among seniors. There is a collection of phlegm in the throat. I do recall that with my dad. It was through his speech therapist that I first learned of this issue. In Dad’s case, it did not keep him from swallowing. Kate, however, seems to be bothered by the idea of swallowing it.

For the moment, we don’t have any skin problems. The squamous cell growth on her lip is completely gone. Our next appointment with the doctor is in November. I’m not concerned about anything now, but it is one other thing for me to watch.

My Twitter friend was right. A caregiver definitely has to be observant when caring for someone who can’t communicate or effectively explain any problems. Otherwise, things could get out of hand quickly.

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An Experiment and Unintended Consequences

The word “experiment” means a trial of some kind. For those of us with a background in research, it usually suggests a rather formalized methodology to determine the relationship among a set of “variables.” Most experiments are not of this nature. They are much less formal (and, therefore, less controlled) experiments that all of use to solve problems we face in everyday life. Caregivers do a lot of this. I am no exception. Let me tell you about an experiment I conducted two nights ago.

As I mentioned in an earlier post, I’m concerned about Kate’s sedentary lifestyle. She doesn’t exercise, and over the past year we have become less active. Now it is getting harder for her to get out of a seat of almost any kind, especially a low one. She walks slowly as though she might be in pain. She tells me she is not feeling pain. I think she is just becoming stiff. We know that she has arthritis in her knees. I’ve been looking for ways to keep her more active physically in order to postpone the day when she needs a wheelchair.

I thought she would enjoy and benefit from some time in our spa. Over the past two years, she has shown no interest in getting in the pool or spa. It’s actually stronger than that. She has resisted the idea, and I haven’t pushed her. I decided I needed to try a different approach. Knowing that she can no longer fit in her old swimsuits, I ordered one online last week. It arrived on Friday. Now all I needed to do was find a way to get her to put it on and get in the spa.

As we arrived home from dinner Sunday night, I told her I wanted her to help me with something when we went in. She said she would. Once inside, I gave her the swimsuit. I told her I had bought it and wanted her to try it on to see if it fit. She agreed. I felt a small measure of success, but the bigger problem might be getting her in the water.

She put on the suit, and I told her I wanted to put on mine as well. I explained that I wanted to experiment with something in the spa and needed her help. She didn’t protest. Getting in the spa required care, but was not too difficult. At first, I tried to help her step down to a step about ten inches from the surface of the water. She was quite nervous. I gave up on that and suggested she sit on the edge of the spa. From there I was able to help her sit on the step and then slide over to the seated area.

Once she was in the spa she was relaxed and started talking. She loved looking around her backyard where she used to spend much of her time tending to her plants. The water was also a comfortable temperature. I showed her how she could move her legs as though she were riding a bicycle. I commented about its being an easy way to exercise her joints. She agreed but only moved her legs for a moment. We spent about an hour talking. Any number of times she said that we ought to do this more often. My experiment was working better than I hoped. I was thinking that next time I could get her to move a little more.

When we were ready to go in, I got out first with the intent of extending my hands to her and helping her get out. She was frightened again and unable to follow my instructions. I finally got her in a seated position on the step inside the spa and on top of the seating area. The problem then was her not having enough strength to get up on her own and my not having enough strength to pull her up without a little help from her. She was too frightened to do anything. I got her to roll over onto the deck of the pool. That is when I discovered how hard it is to get her up when she is flat on the floor and emotional as well. I had another idea. I thought it would be easier if I took it one step at a time. I got on my hands and knees and asked if she could do that. If so, I might be able to lift her. She couldn’t understand what I wanted her to do. I can’t remember exactly what worked, but I got her up after several tries. So much for my bright idea of the spa for exercise.

I haven’t given up totally on the idea. I think it might be easier and safer if we used the pool instead. We have four steps at the shallow end. It should be much easier for her to walk down the steps with my assistance. We could do the same on the way out. I’m going to think about it a little more. I’m not quite ready to try again.

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Dealing with Squamous Cell Carcinoma

Except for our regular appointments with our doctors and dentists, Kate and I have had little reason for medical treatment since her diagnosis. A year ago, Kate’s arthritis in her right knee led us to an orthopedic clinic for a shot of cortisone. She has gotten along well since then although she complained of a little pain a few months ago. More recently, I have asked her on several occasions if she felt any pain. She has always said she didn’t.

Four or five weeks ago, I noticed a small growth at the edge of her upper lip. It had been well over five years since she had seen her dermatologist. I made an appointment, and the doctor performed a biopsy. A week later, I received a call that the she has a squamous cell carcinoma. We arranged an appointment to have it removed. It was scheduled for noon yesterday.

I much preferred an afternoon appointment. That would have been much easier for Kate and for me as well. That’s because I would have to wake her earlier to have lunch before the surgery. Unfortunately, we would have had to postpone the appointment until much later. They didn’t recommend that.

Every time I face getting her up early, I do so with a bit of trepidation. This time there was no problem at all. Although I had to wake her, she got up easily. That enabled us to have a leisurely lunch and arrive at the doctor’s office twenty minutes before noon. I didn’t mention where we were going until lunch. Kate didn’t understand why we needed to see the doctor and quickly forgot. I explained again on the way over, but she never really grasped the problem.

The doctor who was to perform the surgery was not her regular dermatologist. This doctor is a specialist in squamous cell carcinoma. He immediately noticed that it was hard to see the spot where the biopsy had been taken. Her dermatologist had either removed a large portion of it or it had diminished since the biopsy. The specialist summarized five or six options for treatment. They included complete surgical removal, radiation, freezing, and a topical chemical treatment that we could give at home twice a day for three weeks. After a brief discussion, we settled on the chemical treatment. That requires a compounding pharmacist. I took the prescription to the pharmacy, but they said it would be 24 hours before they would have it ready. I’ll pick it up later today.

As you might expect, the whole process was confusing for Kate. I tried to translate the doctor’s explanations, but she never really understood why she was there and that she had almost had surgery. In this situation, I didn’t think that was a bad thing. She didn’t seem annoyed or frustrated by it all. She wanted to understand what the doctor was saying. She just couldn’t.

I had a United Way meeting at 1:30 and had arranged for our sitter to meet us at the dermatologist’s office at 1:00. She arrived a few minutes before that as we were checking out. Perfect timing. This was one of those times it was really nice to have a sitter. She was able to take Kate home while I went to my meeting. Kate mentioned that she was hungry, so they dropped by Panera on the way. That meant she had a second lunch, but it also helped Kate pass the time until I got home later.

The balance of the day went well. At dinner, we ran into three people we know and had nice conversations with them. At home, we watched an Andre Rieu concert from London on YouTube. Kate enjoyed it more than usual. I’m glad to report it was a good day.