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A Confusing Start

About 7:45 this morning, I saw on the video cam that Kate was getting out of bed. I walked to the bedroom and saw her standing at the foot of the bed. She was glad to see me, actually relieved though I didn’t realize it until a few minutes later. I asked if she wanted to go to the bathroom. She said she did and asked where it was. I walked her there. I left her in the bathroom and went back to the kitchen where I could watch the video cam to see when she was ready to go back to bed.

It wasn’t long before I heard her say, “Hey.” She had cracked the door open. When I got to her, she wanted to know what she should do now. I told her it was still early and that she should rest a little longer. As we walked, she thanked me for helping her. She said, “I don’t know anything. I don’t know what to do.” I told her I would help her. She thanked me again and said, “You’re so nice to me. You make me feel better.”

After she was in bed, she said, “I don’t even know where I am.” I explained that she was in her very own home in Knoxville. She said, “I am?” Then I told her it was our home. She was surprised and couldn’t understand how that had happened. As we talked, she began to relax. I told her I was going back to the kitchen and that she could call me if she needed anything. She asked my name. I told her and said, “Just call my name.” Then I said, “Or you could just say, ‘Hey.’” She repeated “Hey,” and I told her that was all she needed for me to come back. Before leaving, I asked if she would feel better if I sat in my chair beside the bed. She told me I didn’t need to do that. She thanked me again, and I left the room.

This was a moment in which I felt her complete dependence on me. She said it was frightening. I can’t imagine what it must feel like, but frightening seems to come close. Her memory is flying away, but she still retains the ability to recognize she has a problem and can’t understand why. It was a similar experience last summer that led me to remind her that she has Alzheimer’s. I chose not to tell her this time. I decided to focus solely on being compassionate in the words I spoke and in the tone of voice I used. I told her she was going to be all right, that I was with her and would help her. That seemed to work.

I wonder how she will feel when she gets up. It’s quite possible that she may not feel the same level of confusion. On the other hand, I know that someday the confusion will not go away. By then, she may not realize she has a problem at all. I don’t want that nor do I want her to suffer from recognizing how little she knows or understands. What I wish for most is something that can’t be. I wish she didn’t have this disease at all. Like all caregivers in my position, I have to focus on what I can do – make her life as pleasurable and frustration free as possible. That has served us well up to this point. I trust that it will carry us through to the end.

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A Winning Streak

We often hear about winning streaks in sports, but all of us have streaks in our everyday lives. We just don’t keep statistics in the same way. In the first place, we don’t usually categorize the various aspects of our lives. In sports we have such categories as consecutive wins, completed passes, passes without an interception, games with a hit, etc. Even if we did, we don’t go to the trouble of keeping records.

I’m thinking of streaks right now because Kate and I have had a streak of good days for over a week since she got over her cold. She’s still asleep, but I am optimistic that we will continue that streak today. A lot of little things make me feel a day has been good. Her happiness is probably at the top of the list. Something that goes along with that is the nature of our relationship. I work to avoid days when I have to push her to get places. Fortunately, she is good-natured. We work together well. Each of us wants to please the other.

The other day I saw something on Twitter that suggested a caregiver would do well to foster a sense of teamwork between himself and the person for whom he cares. I think that is very much the way Kate and I have worked together. When I push too much, she resists. She has her own sense of time and cannot hurry no matter what. Two days this past week, she had appointments with her ophthalmologist at 11:00 or shortly thereafter. For months, getting up that early has been a problem for her. This week I had no trouble at all. She was very cooperative even though she couldn’t remember why she had to see the eye doctor.

In addition to being cooperative, she is most appreciative. Those qualities are great reinforcers for me since I want to make her life as happy and trouble free as I can. Twice during the night we had experiences that illustrate how well this can go. The first occurred at 10:45 when she got up to go to the bathroom. I got up with her and walked with her. Then I did something that I haven’t done before and won’t do again. I usually wait with her. This time I decided to wait for her in bed. I didn’t expect to go back to sleep before she was finished, but I did. At 11:00, I looked up at the door to the bathroom and noticed that the door was closed. I got up to see if she was still in there. She wasn’t. I found her on the sofa in the family room. She couldn’t have been there long and was still awake. She was very glad to see me and said she didn’t know where to go. I said, “You must have been scared.” She said she was and thanked me. As we walked back to the bedroom, she thanked me again. All of this happened in the span of fifteen minutes, but it was an emotional experience for each of us. Each was glad to see the other, and we were happy as we got back in bed.

She got up a second time just before 6:00. I had just waked up myself and was about to get out of bed. I helped her to the bathroom and got her back to bed. As she always does, she repeatedly thanked me for showing her the way, helping her, and getting her back to bed. As she continues to decline, she is developing a greater sense of dependence on me. Her appreciative response makes me want to do the very best I can to make her life as easy and frustration free as possible.

So, after a string of good days, I don’t see any signs that it should be any different today. I won’t be keeping any statistics. They don’t really matter. What matters is that we are working together to make the very best of a diagnosis that no one wants. We’ve been successful thus far. I plan to keep that in mind as we approach the remaining part of our journey.

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Valentine’s Day

Kate’s celebration of Valentine’s Day started late in the afternoon on Wednesday when a high school student and neighbor of ours delivered a dozen red roses to her. The young lady had called me several weeks ago to let me know she was selling roses as part of a fund-raiser at her school. When she arrived at our door, I invited her in to give them to Kate. I realized the likelihood that Kate would think the roses were from the girl but didn’t tell her otherwise. She responded with enthusiasm and appreciation for her thoughtfulness and gave her a big hug. After she left, Kate selected a spot in the family room where she put them. Yesterday morning she had long forgotten the girl and the flowers but she saw the roses on the table. I told her they were from me. I got the same enthusiastic response and hug, and she got to celebrate the same present twice.

She lived the whole day without recognizing that it was Valentine’s Day except in the moments when someone would mention it, but it was a day filled with nice moments. At lunch, our server took time to show us a picture of his three-year-old daughter dressed up for Valentine’s Day. He is from Romania where they celebrate “Name Day.” He explained that his daughter’s name is Valentina so Valentine’s Day is really special for her and her parents. Kate loves children and was delighted seeing his daughter’s photo. She wouldn’t remember, but we met the mother and daughter one other time when we had lunch there. As we were leaving, we walked by a table where two grandparents were celebrating the day with their new grandbaby. Kate had to stop and comment on her and how beautiful she was. We had a brief but pleasant conversation with them and then left for home.

At 2:00, Kate had a massage. I still don’t detect any sign that she thinks having a massage is special, but it seems to me that she must derive some immediate pleasure from it. There is always some turnover in the staff, but she has only had to change massage therapists once. We come often enough that the rest of the staff knows her and watches out for her. When I first started taking her, the staff let her walk out. When I arrived, I couldn’t find her. Then I saw her walking along the store fronts in the shopping center where the spa is located. After that I have made sure that all the staff is aware of her Alzheimer’s. I also take my laptop or iPad and walk a few doors down to Whole Foods where I wait. Then I go back about five minutes before she is ready. We’ve had no problems since.

We hadn’t been home long before a church friend stopped by to visit Kate. When Kate served as the volunteer church librarian, the two of them went out to lunch regularly. Her husband had Lewy Body Dementia, and she has been good about checking in on Kate since he died a few years ago. They visited for over an hour without a break in the conversation. I was in the kitchen and couldn’t hear what they were saying except when Kate called me in one time to help her answer a question and also when her friend was leaving. I heard enough to know that she was handling herself well. She can’t recall specific facts, but she can express her thoughts about education and children and many other things. This reminds me that even at times when she doesn’t know my name or that I am her husband, she does remember my personality. She regularly surprises me with the accuracy of her perceptions of me.

Last night we went to a Valentine’s dinner at Casa Bella. They didn’t have music this time, but we were seated at a table for four with the 94-year-old couple with whom we always sit on music nights. On those nights we have six or eight people at our table. That makes for a different kind of experience than last night. Larger numbers of people create more difficulty for Kate. Sitting with this couple we like so much was a real treat. They are both in remarkably good shape. He is the oldest living Hall of Fame basketball player at UT. I’ve always been impressed with his memory and learned last night he has a photographic memory.

We had a pleasant conversation throughout the dinner. Even Kate got into the act. The couple is aware of her Alzheimer’s. Even if they hadn’t been, they would have suspected something. A number of times she was unable to follow the conversation and asked questions that she should have known from what had been said previously. She also got wound up talking about her school experience. This is one of those occasions she didn’t stick to her feelings but communicated what she was reporting as fact. She reported things I knew didn’t happen or that she could not have remembered. She also interrupted the man several times to continue talking after he had started talking about something else. They are very understanding and no harm was done. It was a nice way to end Valentine’s day. I hope we’ll be able to enjoy their company for much longer. Since they are 94, and Kate is already in the late stages of her Alzheimer’s, the end may come sooner than I want. Like everything else, we will continue to enjoy these moments as we experience them and be grateful.

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Remarkably Upbeat and Alert

I’ll never know what caused Kate to be frightened yesterday morning or unusually upbeat and alert by the time we got to Panera for a muffin. The upbeat part made for a very nice day. I have already commented on our conversation at Panera. It was a special time for the two of us.

I should make clear that there was no difference in her memory. Her behavior was upbeat and normal, but her memory was essentially the same. Except for a few questions she was asked at her eye doctor’s appointment, she was never put on the spot to say anything related to any lost memories. She continued to ask where we are though she only asked my name and hers a few times during the whole day. In fact, she called me by name several times.

We had a special treat at lunch when our friends, the Greeleys from Nashville stopped for lunch on the way to visit friends in North Carolina. Kate handled the situation unusually well. Scott is Kate’s longest standing friend. Their relationship goes back to the cradle. When I told her that we were going to have lunch with Scott and Jan, her eyes lit up. She had a strong positive reaction, but she couldn’t really remember any specifics about them. Before meeting them, she asked me their names two or three times. After they arrived, we chatted briefly before they went to the restroom. Kate asked again what their names were. She did the same thing after we left the restaurant. On the other hand, she responded to them as warmly as ever. She clearly recognized them as good friends. They never put her on the spot to answer any questions. She also seemed to be unusually alert. She participated in the conversation and responded appropriately to things we talked about. Sometimes she asks a lot of questions because she can’t hear or follow the conversation. That did not happen at all. It may have helped that we sat in a relatively quiet section of the restaurant. I believe our conversation was very relaxed, not rapid paced as it is sometimes at our music nights at Casa Bella. She was obviously very comfortable and poised.

Another couple we know stopped by our table on their way out. We hadn’t seen them in quite a while. I am sure Kate didn’t know who they were, but I am equally sure she recognized the woman. She was just as natural and poised with them as with the Greeleys. Once again, she wasn’t put on the spot to test her memory. It was just a brief encounter with expressions of pleasantries that didn’t call for anything but a facility for light conversation. That is something Kate has always had.

We came back home where she rested on the sofa. She always likes looking at the trees and greenery in our back yard and the neighbor’s. She was unusually taken by them yesterday. As I do when she is enjoying music, I take great pleasure knowing that she finds such satisfaction in the beauty of nature. How grateful I am that she is able to enjoy life so much while living with Alzheimer’s.

After resting, she got up and said she was going outside to water her plants. I was stunned. I think it’s been two years since she expressed any interest in her plants. Prior to that it had been a passion of hers. She stopped during the winter two years ago and has never shown any interest until yesterday. Late this past spring or early summer, I had someone replant several pots on our patio. I thought that might rekindle her interest, but she has never shown the slightest sign that she cared about them.

As she prepared to go outside, I noticed that she had put on a pair of brand new shoes that I had received in the mail that very day. I suggested that we might find an older pair, and she gladly consented to change. Then she said, “Where shall we start?” That was the first hint I had that I might be a participant. I didn’t ask any questions. I said, “Why don’t we start out front. There are some things on the front porch that need water.”

When we got outside, I turned on the water. She did the watering. A lot of her watering was the bare dirt where I had some dead shrubs removed this past summer. The other focus was the grass and a few shrubs that were beginning to blossom. We had both gone out without jackets. It wasn’t long before she felt it was too cold to stay outside. I was glad because I had made dinner reservations and knew that it was about time for us to leave. The real accomplishment was not getting the plants watered. It was seeing her enjoying herself outside once again. As the weather improves, I wonder if she will want to do more of this. I hope so.

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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.

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From Fear to Joy in 60 Minutes

At 9:45 this morning, I saw on the video cam that Kate was awake and went to the bedroom. When I got to her, I discovered that she was scared. It turned out that she had been awake for a while and wondered where I was. She never called for me, or I would have gone to her right away. I also did not detect any movement that would suggest she was at all worried. When I apologized, she said, “Don’t ever do that again.” I told her I wanted her to know that I would never leave her alone and that I wanted her to call me if it happened again. She said, “I didn’t know where you were or where I was or what was happening.” Her memory of this fearful experience lasted a much longer time that I would have imagined. After she was dressed and taking her meds before leaving the house, she mentioned this again. This would have been about thirty minutes later. She said very sweetly, “I know you didn’t mean it, but don’t ever do that again – whatever your name is.”

Before leaving she saw a piece of ceramic tile that one of our grandsons had painted as a marker for our dog Chico’s ashes. We used to keep in a flower bed in our back yard where we had scattered his ashes. She didn’t know what it was, but she thought it was pretty and asked me if she could take it with her in the car. Of course, I said she could. We had enough time to stop by Panera for a muffin before an 11:20 appointment with her ophthalmologist . She asked if it would be all right to take it in the restaurant. I told her that would be fine. We put it on our table.

At Panera we had one of those nice conversations that occur periodically. She was in a very good humor and talkative. We talked about our lives and how fortunate we have been. She again showed how perceptive she can be when she said, “If you are with someone you like, it doesn’t matter where you are.” I agreed. After all, this was one of those moments that are special. We were just at Panera having a blueberry muffin, but it is the kind of moment I will treasure in the days ahead. How grateful I am that this is possible so late in her journey.

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Dinner Conversation

Several times I’ve mentioned that Kate sometimes thinks I am her daddy. Usually, she asks, “Are you my daddy?” when she doesn’t remember who I am. On other occasions, she says something like, “Okay, Daddy. Whatever you say.” These words are less clear in their meaning. It could mean that she was teasing me when she thinks I am treating her like a child. Often I am left in doubt as to what she means.

Last night at dinner we had a conversation that illustrates how she can move seamlessly between understanding and not understanding. I can’t remember the exact words, but here’s my reconstruction of our conversation.

It started when she asked where we were. I told her we were in Knoxville where we had lived for forty-seven years. She said, “And I’ve never had a boyfriend.” I said, “I could be your boyfriend.” She said, “You’re my daddy.” Then she paused a moment to think and said, “I would say that any girl would be happy to have you as her boyfriend.” I thanked her for the compliment. Neither of us said anything for a minute or two. Then she asked asked where we were. Once again, I told her we were in Knoxville. This time I added, “And this is where our two children grew up. They were almost 3 and 1 when we moved here.” Sometimes she expresses surprise. Not this time. She just said, “What are their names?” From this point on we continued the conversation without any sign of her thinking I was her daddy. To me it was a good example of how easily her perceptions seemed to drift from one “reality” to another in such a short span of time.

A related example occurred when we had finished our meal. I asked if she wanted dessert. She said she was full and just couldn’t. I told her I felt the same way. Moments later the server approached the table and asked if we were ready for dessert. Kate said, “What do you have?” I knew then she had made a different decision, and, of course, I enjoyed the fudge brownie and ice cream with her. We’re living in the moment and loving it.

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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.

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Success With the New Sitter

Last week I was very disappointed to learn that we were losing our Monday sitter. She had been my favorite. A couple of weeks ago, we had a new sitter, Cindy, when I had a luncheon to attend. She had an easy job since Kate was still in bed when I got home. She had been asleep the entire time I was gone. I did introduce her to Cindy before I left, but they had no chance to get acquainted.

Cindy got the assignment to sit with Kate yesterday while I went to Rotary and a United Way meeting. I was comfortable having her but was a little uneasy as I wondered how Kate might respond to someone she didn’t know. I decided it would be best to wake her early enough to get her dressed and ready for lunch. Then the two of them could go to lunch at Panera. That would give them a little time to get acquainted.

I didn’t say anything to Kate about my leaving or Cindy’s coming. I waited until she arrived. I met her at the door and walked her to the kitchen where Kate was taking her morning meds. I introduced Cindy to Kate and told Kate that Cindy had come by to see her a couple of weeks ago, but she was asleep. I went on to say that she was back and that they could go to lunch together. Kate received her just the way I would have wanted. She was happy that they could go to lunch.

Then I told her I was going. She said, “Why don’t you eat lunch with us?” I told her it was my day for Rotary. She gave me a slight frown and then turned to Cindy and said something like, “Well, we’ll just have good time ourselves.”

Before leaving, I set up the TV to watch YouTube videos of the Tabernacle Choir. When I returned home, they were watching intently. This is one of the few times that I have used the video cam to check on things while I was away. I checked between Rotary and my United Way meeting. They had apparently just gotten back from Panera and were starting the video. I checked again after my UW meeting. They were still watching.

When I got home they were both sitting in front of the TV. They had been well-entertained by the music, and I was feeling great that it had been a successful first visit with this sitter. Today I will confirm with the agency that she is to be our regular Monday sitter.

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A Special Moment Last Night

Before going to bed last night, I put on several YouTube videos. One of them was Andrea Bocelli singing “The Lord’s Prayer.” Kate was immediately engaged and put down her iPad to listen. The next one that came up was Alfie Boe singing “Bring Him Home.” The YouTube algorhythm must have selected it because it is a prayer from Les Misérables. I was seated in the chair by my side of the bed while she sat in a chair on the other side. I looked over at her and saw that she had closed her eyes and put her hands together in front of her in a praying position. She was fairly still, but I could see some physical responses in rhythm with the music. She was hanging on every word he was singing. She loves the highest note on the final word when he ends with the plea “Bring Him Home” (as does everybody else).  Before he got the word out, she was already mouthing it silently. She, too, was praying. I was touched. Music is bringing her so many special moments.