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.

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.

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.

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.

Another Good Day: Two Victories

It’s been a year and a half since I engaged the services of sitters for Kate. From the outset I was concerned about her accepting them. She surprised me by doing so immediately. She was never enthusiastic, however, just accepting. As she has become more dependent on me, she has seemed more reluctant for me to leave without her. Recently, she has enjoyed being with both sitters. That continued yesterday when Mary arrived.

When she came in, I was in the back of the house. I heard Kate greet her. A few minutes later, I walked in the family room. They were chatting. It looked just like Kate was talking with a neighbor who had dropped in to say hello. She did say, “Where are you going?” when I told her I was leaving, but she was perfectly at ease. There was no sign that she was bothered. As on several other occasions, I left feeling at ease myself.

When I walked in the house later, I heard Kate say, “Perfect timing.” It turned out that she and Mary had just returned from Panera. Kate told me they had had a good time.  I considered this another victory. It has been months since she has let the sitter take her to Panera in the afternoon. Prior to that it was a regular event. I hope this continues. Before Mary left, Kate said, “Have you ever seen her drive?” I told her I had only seen her drive in the driveway. Then she told me what a good driver Mary is. This is a consistent pattern for her. She regularly talks about well people do things. It’s one of the things I like about her.

Even after Mary was gone, she repeated they had a good time and how much she likes her. That was quite a victory. I couldn’t have had a better welcome home. I’ll feel much easier the next time I leave her. Even though I hadn’t spent much time with Kate earlier in the day, I was ready to say it was another good day. The rest of the day also went well.

Last night was pizza night. When we got home, she said, “What can I do now?” I suggested we go to the family room and that she could look at one of her family photo books, work jigsaw puzzles, or look at her “Memory Book,” the three-ring binder I had put together with information about our families and memories of our lives together. She started with the memory book while I watched the evening news. In a while, she picked up a history of her family’s church in Fort Worth. It was published in 2001 on the church’s 100th anniversary and had been a gift to her mother. It’s a book of over 200 pages with normal type (small for Kate).

As she went through it, she was thoroughly engaged although she had difficulty reading it. I was still impressed that she continued to work at it for about thirty minutes. She could not have done this before her cataract surgery. I should add that she also needed my help. I was seated on the sofa across from her. Every few minutes she would see a photo but couldn’t read the type indicating the person’s name. Sometimes she could read a heading but couldn’t read the text. She finally reached a section she wanted to read and asked me to read it for her. For another thirty minutes, I read to her. Her interest never waned, but I don’t believe it was because of the content per se. Some of the things I read were about people she didn’t know at all. There were also accounts of committees appointed to conduct a search for a new pastor or construct a new building, but it was her family’s church, the church in which she grew up. I was touched to see the pleasure she enjoyed looking through it.
That has to count as another good day.

Post-Surgery Report

In my last post on Kate’s cataract surgery, I noted that she was having trouble keeping the patch over her eye. There was no improvement after that. She took the patch off just before we went to dinner. I kept it off until nearly time for bed when I saw her rubbing her eye. I woke up once during the night and saw that it was still on. When I got up at 6:25, it wasn’t. I decided then that I would not put it on again. I’ll just try to keep my eye on her and stop her if she starts to rub her eye. I think this may be just as effective as the patch and less troublesome for both of us.

Yesterday we had a late morning follow-up appointment with her ophthalmologist. Kate couldn’t understand why she had to see her. She has no memory of having surgery. That was true even as we walked away immediately after the surgery on Tuesday. The doctor asked her how her eye was doing and quickly recognized Kate hadn’t remember. Then she examined her eye. She was pleased with what saw as well as the eye test her technician gave her prior to her coming into the room. At her last appointment, Kate’s test showed that she was legally blind in that eye. One day after surgery, she scored 20/50 on the same test. The doctor said that was especially good since they had adjusted the lens for best vision to be at shorter distances. That’s because her major activity is working puzzles on her iPad. It’s still too early for me to know how well that is working. I’ll be watching closely in the next few days.

Cataract Surgery

For almost a year I had seriously considered cataract surgery for Kate. I held back because I had a concern about potential effects of the anesthesia. In addition, she seemed to be getting along pretty well even though her vision was about 20/60. Two recent changes made me believe now was the time to act. The first was that I noticed that she was pretty shaky crossing streets and going up or down curbs or stairs. Even more striking was her inability to see where puzzle pieces should go even when there was only one remaining piece. The second was how poorly she did on her last ophthalmologist’s visit. She couldn’t even see the big “E” that covered the whole screen. The doctor said she was legally blind in that eye. As a result we made the appointment for surgery.

Among my concerns was that the surgery was scheduled for 11:00 this morning. That meant I would have to wake her earlier than usual. Fortunately, that turned out to be relatively easy. When I went into the bedroom, she was already awake and said hello. When I walked over to the bed, she gave me a big smile. To me that meant she recognized me. I told her I wanted to put some drops in her eyes. That startled her, and she wanted to know who I was. I gave her my name and told her I was her husband. This was one of those times she just wasn’t convinced. I decided to divert her and focused on getting ready. I told her we had to get ready for her eye doctor’s appointment, and I really needed her to get up. She was very cooperative.

We had a little time after she had dressed. I took her to the family room and asked her to sit down. I sat beside her and opened her “Big Sister Album.” She is always taken by the cover photo of her with her brother when she was five or six. I told her it was a picture of her and her brother. Then we opened the book and saw pictures of her with her mother and father. We went through several pages, and it seemed like her confusion was over. We didn’t, however get to pictures in which I was included, so I don’t know if she was beginning to recognize me or not. She was so engrossed with the album I suggested we take it with us. She liked the idea although I am sure she had no idea where we were going. I know she couldn’t remember we were going to see the eye doctor.

After checking in, we sat down in the waiting room and started looking at the album again. She loved seeing her baby pictures and commented on how cute she was. She asked me to identify her mother and father. Then we looked to the page on the right. I pointed to a woman and asked if she knew who that was. She said, “Nana.” She was right.

We didn’t get very far until we were called to the surgical area. It was very clear that she had no idea why she was there and what was going to happen, but she was very calm and cooperative with the various people who were assisting. Our appointment was at 11:00, and the surgery was over just after noon. They called me in about 12:20, and brought her to a recovery area five minutes later. We were on our way home before 1:00.

The only issue it looks like we are facing is keeping her from rubbing her eye. They put a rather substantial patch on her eye and told us to keep it on for six hours. I gave up after four hours. By that time she had taken the patch off twice, once when I left the room to brush my teeth and another when I was sitting in a chair ten feet across from her. She had frequently asked if she could take it off since leaving the doctor’s office. She simply can’t remember that she had surgery or that she has to wear the patch.

The doctor called around 4:00 to check on her. I told her the patch was off. She said that is all right but that I should do my best to see that she doesn’t rub her eye. We have an appointment with her at 11:20 tomorrow. I assume she will probably look at the eye to see how it is healing. I trust it will go well.

I took the patch off when we went to dinner assuming that I would be able to watch her closely from across the table. We had no problems. After we got back home, I saw her begin to rub her eye and had to put the patch back on. I hope we don’t have any problems while sleeping.

Definite Progress

Yesterday was clearly a day of improvement for Kate. There has been no sign of wheezing since Friday evening. She is also coughing less. Those were the two most obvious signs of her being sick. She has had to clear her nose more than usual, but it has been less of a problem.

She has been so tired during the past eleven days, that I was surprised when she got up about 8:30. She wasn’t as groggy as she often is. For the first time in several weeks, we arrived at Panera about 10:15. That gave us plenty of time for a muffin and lunch before the sitter came at noon.

When Valorie arrived, she gave her a friendly greeting. I mentioned that I had put in a DVD of Fiddler on the Roof. At first, she said she wanted to rest. Then she changed her mind and wanted to watch. When I told her I was leaving for Rotary and the Y, she said, “You’re leaving? Why don’t you stay here with us and watch?” I explained that I needed to get my exercise and would be back later. She didn’t complain, and she didn’t look sad. It was clear by the look on her face, however, that she really wanted me to stay. As I left, Kate and Valorie were watching Fiddler. I wondered if Kate would make it through the entire movie without resting. When I returned, Valorie said she watched the whole thing without napping at all. I was happy to hear that.

The big disappointment of the day was learning a little later that Valorie will no longer be coming. She is the sitter I liked the most and would have loved having all the time. The agency didn’t give any explanation. Given the privacy laws, I can understand that, but I would really like to know if she left the agency or they shifted her to another client. I have her phone number and plan to call her tomorrow.

In the meantime, they are sending the new sitter that came last week while I attended a luncheon. I felt she was all right, but Kate slept the whole time I was gone. I did introduce the two of them before leaving, but I wish Kate had had more time to get somewhat accustomed to a new person. This is one of the challenges of our time. There is a lot of transition in positions like this. It makes me realize how fortunate we were with the team of caregivers we had with Kate’s mother. After the first month or two, we settled into a team seven or eight people who were with us until her death. That was almost five and a half years.

Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

Making Progress?

Kate was getting up on her own about 11:45 yesterday when I saw her on the video cam. I went to the bedroom and asked her how she was feeling. She looked puzzled and said, “Why do you ask?” I don’t think she thought she was sick. In fact, over the past nine days she has only recognized that she coughed and had to blow her nose and that, of course, only in the moment they happened. I had told her she had a cold, but she never remembered it. Day before yesterday, she definitely felt sick. That was when I heard her wheezing. I don’t believe she has had a conception of her being sick over a few days.

The good news is that I listened for her wheezing and didn’t hear anything. Then I asked her to take a deep breath and blow out through her mouth. She did that a couple of times. I still did not hear a wheeze. That made me feel a lot better. I didn’t want to see this advance to pneumonia. Of course, both of us have had the pneumonia shots, but we all know they don’t always work the way they are supposed to. Like many others, we had a light case of the flu last year even though we had the flu shot.

In addition to not wheezing, it was a good while before she coughed after getting up. Excluding her Alzheimer’s symptoms, she also seemed more normal. When I walked in she said, “Are you my daddy?” When I told her I was her husband, she couldn’t believe it. I decided it was best not to go into an explanation and suggested she take a shower. She asked where the bathroom was, and I took her. She took a long shower, dried off, and got back in bed.

After I got her up and helped her dress, she seemed fine. She wasn’t coughing. I decided to go out to lunch When I backed he car out of the garage, she coughed several times. Then I had doubts about going out. When she stopped, I decided to go ahead. Except for a couple of briefs coughs, she was fine at lunch.

Several times she asked where we were. Of course, she has been doing that for a long time. Now there is a new twist. When I tell her we are in Knoxville, Tennessee, she often asks, “What is Knoxville?” Then I explain that it is a city and that Tennessee is the state. It is only in the past few months that she has commonly asked this. It is another sign of the subtle changes that are constantly taking place. Mixed with her questions about our location, she also thought at times we were in Fort Worth. I suspected this on the way to lunch. She commented on remembering many things she saw along the way.

We came back home after lunch. When I got out of the car, she asked if she could help bring things in. I am sure she thought we were traveling and needed to unload the car. I told her I could get everything. Let me digress a moment.

(This is something new that I have mentioned before. Over the course of her Alzheimer’s, she has rarely asked if she could help me. In the past few weeks, she has asked if she could help me fold and put up the laundry, unload the dishwasher, and now unload the car. I also mentioned in a previous post that the other night she asked if there were anything she could do to help me. In that case, she was worried that I was carrying a heavy load and wanted to ease my burden. These may seem like very little things, but they are totally different from the norm the past ten years or so. She was letting me do things even before her diagnosis.)

She said she was tired and wanted to rest but brushed her teeth first. After brushing, she walked back to me in the kitchen. I could tell by the look on her face that she wanted to know what she could do next. That is a very common thing for her to do. I gave her the iPad and said she could sit in the family room and work puzzles, and I would be there in a minute. I went back to my computer. When I had finished what I was doing, she was walking out of the family room to the back of the house. I don’t believe she even sat down to work her puzzles. Shortly, I went back to one of the guest rooms where she was resting on the bed. She has definitely been more tired since catching her cold.

About two hours later, she came into the kitchen with her iPad under her arm and stood beside me. She didn’t say anything. This, too, is a very common experience. I knew that meant she wanted to get out of the house. We went to Barnes & Noble. We had been there fifteen minutes when Kate looked up at me and said, “I forgot they had this here.” I said, “What do you mean?” She pointed to her iPad and the puzzle she was working. By now I shouldn’t be surprised that she doesn’t recognize her own iPad, but I am. This was one of those times. I wonder what could have made her think it belonged to Barnes & Noble. This is similar to what frequently happens in restaurants. As we are about to leave, she often asks if the cup or glass is hers or belongs to the restaurant. It always makes me think about how she perceives the world. I simply can’t imagine how confusing for her it must be not to know where she is, what is hers, where we are going, and what she is supposed to do. There is so much I don’t understand. No wonder she gets confused.

We had another beautiful end to our day. I had chosen a YouTube video of choral music. In its cycle from one video to the next, we landed on a series of videos by a church choir. I didn’t see any identifiers as to what church or where it is located. I will have to check today. I do know that Kate was taken with everything they sang, and almost all their music was unfamiliar to either of us. She didn’t want me to stop the videos to go to bed. Finally, I turned them off and help her get ready to bed. I had to assure her that this was not a live concert we were watching, and we could pick where we left off tonight.