Remembering Texas

Although Kate has always valued her Texas roots, it has never been as significant as it has been in recent years. Part, maybe most, of this feeling for her home state is tied to our reflections of the past as we get to our senior years. I know of lots people who find themselves reconnecting with friends from their childhood and sharing old memories of their time together. I suspect that Kate’s affection for Texas also relates to her Alzheimer’s. Like other people with dementia, she lost her short-term memory quickly. Now she retains only long-term memory, and most of that is gone as well. The fact that she is a Texan has stuck with her though she sometimes forgets her birthplace and has to ask me.

After returning from a trip to Texas several years ago, Kate’s feeling for the state got a significant boost. It wasn’t long after we were home that I discovered she thought we had discussed and decided that we were moving back. At first, I thought I was the only one she said anything to. Soon friends were asking me about our move. At the time, I didn’t want to burst her bubble, but I also didn’t want to reinforce her thinking. I supported her desire and explained that I would enjoy living in Texas as well. I also told her it would be a while before we could make the move because there were a lot of things we had to do to get ready. I was hoping that her memory of a move would drift away like so many other things.

I was wrong, but I was successful in getting her to think the move would be sometime in the future. Gradually she said less and less about a move. During the past couple of years, she has rarely said anything about it. Now it is coming back. This time she is expressing it as a desire to live in Texas, not something we have decided to do.

I have been quite interested in how she has brought it up. It almost seems like a calculated way to spark my interest. For a while, she would say something like, “I know we aren’t planning to move to Texas, but do you think that could happen?” In the past few days, she has also gently brought up the subject. Yesterday afternoon at Barnes & Noble, she asked where we were. When I told her, she said, “So we’re not in Texas?” I told her we were in Tennessee. She paused and then said, “Where do you think we will end up?”

I told her that depended on a lot of things, that we might stay right here in Knoxville. I explained that we were happy here, like our home, and were comfortable getting around the city which offered a lot of the things to do. Then I added that a lot might depend on our needs as we got older. I suggested that if our needs became significantly greater, we might move to Texas. I reminded her that our son Kevin has spent his whole career working with seniors and has access to all the resources that seniors need. She was pleased to hear that.

I must have been bolstered by her response because I mentioned a possible trip to Texas. Our granddaughter graduates from high school in June. I would really like for us to attend, but I have felt it is very unlikely. I considered our trip to Texas for Thanksgiving to have been our last visit. At the moment, I am keeping an open mind though I still think it is doubtful. One of my memories of our last visit was that she didn’t respond to being in Texas the way I expected. It didn’t seem to mean anything. She didn’t recognize anything and never knew where we were. I am torn now and will probably be the same way when I have to make a commitment to go or stay here. I definitely don’t want to deprive her of one more trip home. It’s just too early for me to make that decision.

There is one thing in the back of my mind that might tip the scale. It’s the apocryphal story of a man who pays daily visits to the nursing home to see his wife who doesn’t remember him. Someone asks, “Why do you visit everyday if she can’t remember you?” He answers, “Because I remember her.” As I consider that story, I think that even if she couldn’t full appreciate the trip, I would know that I brought her back home one last time for a special moment with family.

“Are you my Daddy?”

After being up at 1:30 and again at 7:45 yesterday, Kate got up for good before 9:30. She seemed rested and didn’t show the same degree of confusion she had shown earlier. She still didn’t recognize me as her husband but wasn’t disturbed by it. She was very much like she was the previous night when she thought of me as a good friend.

We made it to Panera for a muffin just after 10:00. Soon after getting into the car, she asked if I were her daddy. I told her I would be happy to be her daddy. She frowned and said, “So you’re not gonna tell me.” I said, “Do you think of me as your daddy?” She said she did. I said, “Well, I am.” We had a similar exchange at Panera. When I told her I would be happy to be her daddy, she said, “You’re not my daddy.”

A little later at lunch, she said, “What is your real name?” I told her and she said, “You could be my adopted daddy.” I said, “I like that.” She asked my name again. Then she told me that she could introduce me to our server as her adopted daddy. That didn’t happen. By the time the server came back she had forgotten altogether. My interpretation is that she was accepting that I was not her daddy, but she didn’t think of me as her husband. To her it must have seemed appropriate to think of me as someone close enough to be her daddy, hence the idea of her adopted daddy. That may be a nice transition from being her husband. I could live happily with that.

Thoughts on Telling the Truth (Again)

The issue of telling the truth to a person with dementia is an ongoing conversation. It comes up periodically on the various message boards as well as social media sites like Facebook and Twitter. There seems to be almost universal agreement that caregivers will find that telling the truth can actually be harmful. That happens because people with dementia often live in their own reality. They may believe that deceased parents are still living, that they themselves are living in another place than where they really live, or that someone other than one’s spouse is her spouse. To tell a person that her mother is dead can be hurtful. When a loved one asks where her mother is, it may be much better to say something like “She is at home.” The idea is to keep the answer to something that is brief and clear. There is little need for embellishment.

Up to this point, I’ve been telling Kate the truth except about her diagnosis. I haven’t mentioned her having Alzheimer’s since last summer when I did so on two separate occasions. Neither case created a problem. As time passed, I have been less willing to take a risk. I have been helped by the fact that, until this morning, she hasn’t had a serious concern about why her memory is so poor.

While I agree with the consensus that not telling the truth is often the right thing, I haven’t felt the need to apply that with Kate. That may be because she often asks me where we are, who I am, who she is, etc. It only seems natural to tell her the truth. That has worked well, but recently I have seen signs that I may need to be less truthful with her than in the past. One of those occurred last night.

As we walked from the car to the restaurant for dinner, she called me “Daddy.” Then she asked if I were her daddy. I told her I was happy to be her daddy. She pushed for the truth and asked if I were. I told her I was her husband. Once at the table, the subject came up again. This time when I told her the truth, she looked skeptical. She told me she thought of me as a good friend. She said she liked being with me and felt safe with me. What she said was especially interesting since she had said similar things to me when I assumed she recognized me as her husband. It gave me a different perspective about the things she says about me. I’ve always interpreted them as words that she would only use for a husband, but it became clear to me that there may have been many other times that she has thought of me as a good friend.

To date, I don’t think the truth has caused any problem, but another incident at lunch yesterday came closer to being just that. In that case, she brought up her mother and wanted me to tell her something about her. I began with “She was . . .” Kate quickly said, “Was?” In an attempt to soften the impact of what I had said, I explained that her mother had died thirteen years ago. Then I told her that she had done a really good thing for her mother. I told her that she had cared for her mother the last five and a half years of her life with the help of six or eight paid caregivers. Kate was very sad and teary. As I told her a little more about her mother, she recovered, and all was well. It did make me think about whether to tell her the truth again. She seems to want the truth, but I don’t want to hurt her. Knowing when it is best not to be truthful can be tricky.

Early this morning we had an experience that was a precursor to the one I wrote about in my earlier post. At 1:30, I started to get a cramp in my leg. I got up. When I got back in bed, I noticed that her eyes were open. She looked like she wanted something. I asked if she wanted to go to the bathroom. She did and wanted to know where it was. I told her I would show her. We walked to the bathroom. I asked if she wanted fresh underwear. She did. She thanked me. Before returning to the bedroom, she said, “You must have a wonderful wife.” I told her I did. She said, “She’s very lucky to have you. What’s her name?” I said, “Kate.” As we walked back to the bed, she kept thanking me. She said, “I don’t know what I would have done without you.” Before getting in bed, she asked where we were. I told her Knoxville. She said, “I mean where are we right now.” I said, “We’re at our house.” She said, “We are?” She didn’t press me for any further explanation. I was glad. At that time of the morning, I didn’t want to test my judgment about telling or not telling the truth.

Once in bed, she thanked me again. She seemed a bit nervous, not quite shaking but uneasy. I said, “You’re going to be all right. You are safe. I am right here with you. I’ll always be with you.” It wasn’t long before she said, “I feel better now. Thanks to you. <pause> What’s your wife’s name?” I told her. In a few minutes, she asked again. This time when I told her, she said, “That’s my name.” She was relaxed and soon asleep. I got up to record our conversation and returned to bed at 2:35.

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.

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.

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.

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.

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.

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.

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.