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Not Everything Goes As Planned

As someone who likes to plan ahead, I may inadvertently convey that everything goes more smoothly for us than it does. Let me assure you that it doesn’t. I plan, but my plans don’t always work out. I am reminded of a cartoon that I saw on our church bulletin board years ago. It said, “God’s response to a five-year plan: Ha. Ha. Ha.” When my plans go awry, it is sometimes not my fault. Other times, it is. As my caregiving responsibilities increase, I notice that it is more the latter. Here are a few examples of the kind of things that I am slipping up on.

As you know, Kate and I go to Casa Bella the first three Thursdays each month. Because we are regulars, we don’t make reservations. We only call if we are not going to be there. The first Thursday in November I slipped up. We were just finishing dinner at another restaurant when I received a call asking if we were still coming. We rushed over and enjoyed the program.

This past Tuesday I was to “attend” a conference call meeting for a committee on which I serve. Although it was on my calendar, I forgot it.

Early last week I received a package with a cardigan sweater that I ordered online. I tried it on to make sure it fit. It did, but I had a little difficulty getting the zipper to work. It took me a couple of tries. It wasn’t until yesterday that I decided to wear it. This time I was unable to zip it at all. Now I need to send it back. In the meantime, I had thrown out the package and accompanying label and instructions should I need to return it. In this case, I didn’t create the problem with zipper, but I normally hold on to packaging and other materials just in case. For some reason, I didn’t follow my normal procedure. It’s not a big deal to correct the problem, but it creates an extra task that I could have easily avoided.

A week ago the father of someone with whom I have worked professionally died. His service was yesterday afternoon. I hadn’t worried about our making it because I had written it on my calendar for 2:30. That should have given me plenty of time to get Kate ready and to have lunch before leaving. Kate has been tired this week. It was just after noon before she got up. This required me to rush her a little more than either of us wanted. She got ready quickly, and we left for lunch right after 1:00.

Knowing that the service was 25 minutes away and that we didn’t have a lot of time to eat, I decided to stop by Panera. When we arrived, it was unusually busy. We couldn’t park as close as we usually do, and it was cold and rainy. Once inside I discovered a long line waiting to order. There were very few seats, so we sat at a community table. Kate is a slow eater. In fact, she does everything more slowly now. It was 1:50 when we left for the church. We arrived with six or seven minutes to spare only to discover that the service was over. It was a short service and started at 2:00, not 2:30 as I had entered on my calendar. That left us with a long 25-minute drive home.

These are all things that anyone could do, but they are not typical for me. I take this as another sign that being a caregiver has an impact in ways we may not perceive or expect. It is easy to become distracted. As we left Panera yesterday, I extended my hand to help Kate step off the curb. As I did, I was carrying an unfinished cup of coffee in my other hand and spilled it on my coat and shirt sleeve. So much for having everything perfectly under control.

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Two Personal Experiences with the Power of Music

When I checked Twitter this morning, I saw a tweet about music and its “profound power, particularly when it comes to memory.” This observation is now commonplace among those who write about dementia and those who live with it. Kate and I have always been drawn to music. Our first date was to a performance of Handel’s Messiah. We have attended many musical events over our marriage. Regular visitors to this blog know that we have binged on music since her diagnosis. I don’t believe, however, that I have ever mentioned two early experiences that Kate and I had that illustrate the impact that music can have on people whose brains have been damaged through stroke and/or dementia.

The first occurred with Kate’s father in the Fall 1989. After experiencing a stroke on Veterans Day, he didn’t speak. Knowing that the stroke had damaged his brain, we wondered what he was able to process. Did he recognize us? Did he understand what we were saying? How was he feeling?

On a Sunday morning not too long after his stroke, we were visiting him along with Kate’s mother who turned on the television to the Sunday morning service at the family’s home church where her father grew up. Not long into the service, a longtime friend and member of the choir sang a solo. We looked over at her father and tears were running down his cheeks. I still choke up when I recount this story. It was a sign to us that although his brain had been damaged, he could still connect with us in some way.

The second story involved Kate’s mother. She, too, had experienced a stroke that affected her speech but not to the same extent. She didn’t speak much and that diminished over time. She hadn’t been able to attend church for at least a year or more. On one of our last visits with her in Fort Worth, Kate asked her mother’s pastor if he could come to the house to serve home communion for her mother.

He came out that Sunday afternoon. We sat around a table on the back porch where he conducted the service. At the end, he said, “The Bible says, ‘And then they sang a hymn.’” Then he led us in “Amazing Grace.” As we sang, we noticed her mother singing as though she did it every day. When we finished, she spoke right up and said, “I think we need something to break the solemnity of this occasion.” She burst into a children’s song. I think it was “This Little Light of Mine.” It was an emotional experience for all of us. Music spoke to her and through her to us. That was the last time I heard her speak or sing so well.

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Nothing Special, But a Nice Day

It’s a cool, rainy morning in Knoxville. Both the neighborhood and the house are very quiet except for some soft piano music playing in the background. I had planned for us to visit our friend Ellen in Nashville today. The weather report changed my mind. It is supposed to rain a good bit and might snow as well. Either way, I’d rather not be on the highway.

I trust that Kate and I will have another good day. We usually do. That was true yesterday. Kate was up surprisingly early (before 9:00). She had gotten up to go to the bathroom and went back to bed. I checked on her at 10:00. She wasn’t asleep but very relaxed and didn’t want to get up.

When I went back about about 10:20, she asked me what she should do. I suggested getting up and taking a shower. She said she didn’t want to take a shower. After she had been to the bathroom, she changed her mind. This was another day she wanted my help to the bathroom, toilet, and shower.

One thing was different yesterday. She knew me as her husband. She may have asked my name one or two times, but she knew we are married and mentioned things during the day that made that clear.

We were able to leave for lunch by 11:30. That made it easy to return home for the sitter at 1:00. Before she arrived, I pulled up a series of YouTube videos with Christmas music. The first one I previewed was Handel’s Messiah. I told her that was a special piece of music for us because we attended a performance of Messiah on our first date in 1961. I have mentioned this a number of times during this Christmas season, so I was surprised to see that she responded emotionally. Her eyes immediately filled with tears.

I left Kate and the sitter with the videos running. When I returned four hours later, they were still watching. Kate said, “You should have been here for the beautiful music.” Mary said that Kate had rested part of the time and may have actually fallen asleep for a little while. She couldn’t be sure.

We relaxed at home for another thirty minutes before going out for our Friday night pizza. We came back home where I watched the evening news while Kate worked on her iPad. Following the news, we watched a portion of Messiah broadcast by the BBC. It was a good way to end the day.

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A Case of Caregiver Error

I feel like I do a good job caring for Kate, but like everyone, I make mistakes along the way. That happened yesterday. In an earlier post I mentioned that I was going to my doctor’s office for my labs prior to an appointment next week. I knew I needed to allow sufficient time to get Kate ready without rushing her. Since she had gone to bed at 7:30 the night before, I hoped it would be easy to get her up. I was wrong about that. The big problem, however, is that I was writing a post yesterday morning and let time get away from me. I looked up and saw that it was almost 9:30, and we needed to leave shortly after 10:00 in order to be on time. I went to the bedroom. Kate was sleeping soundly. I tried to be very careful in waking her. I didn’t want her to feel rushed. I sat down on the bed and put my and on her shoulder. When she looked up at me, I told her I was sorry to wake her and explained why I was doing it anyway. She didn’t say much and made no effort to get up. When it was just before 10:00, I told her I really needed her to get up, so she did.

The problem then was that she had a mild panic attack. It has been a long time since this has happened. This reminded me of why I work so hard to avoid rushing. I think the problem is that she wants to please me. When she has to rush, she can’t think clearly at all and panics. In this case, she appealed to me for help. She wanted my help getting her out of bed. She held my hand all the way to the bathroom. She wanted to shower but didn’t know what to do. I helped her and then walked her back to the bedroom to dress.

We were ready to go by 10:30. It had only been an hour since I first tried to wake her. That was a record, but it came at her expense. I felt bad about it. She was calm when we left the house. I apologized to her on the way to the doctor. By then, she had forgotten everything. She tried to make me feel better. She said I hadn’t rushed her at all. She was just fine. I appreciated that. I still felt bad because I could have avoided the whole thing.

The rest of the day went well. The Bluefish Grill is located near the doctor’s office, so we went there for lunch. When we got home, we had about thirty minutes before Kate’s appointment for a massage. After that we spent a couple of hours at home. She was tired and asked if she could take a nap and wanted to know where she should go. I told her I would be in the family room and suggested she join me and rest on the sofa. She rested until it was time for us to leave for opera night at Casa Bella. It was a good night for music and conversation. It was decorated for Christmas, and everyone seemed to be in the Christmas spirit. The crowd was a good bit louder than usual but was respectfully quiet during the program. We both had a good time and went to bed right after returning home. It wasn’t another night of “pillow talk.”

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Another Unusual Conversation

After finishing the previous post, I put up my laptop, turned out the light, and got in bed. I quickly discovered that Kate was awake. It was about 9:45, more than two hours since she had gone to bed. I’m not sure how long she had been awake. I suspect it had only been a short time. It could have been the whole time she had been in bed, but I doubt it. It was clear that she was wide awake. She was very talkative. We (she) must have talked thirty minutes before going to sleep.

She began by telling me what she was doing. She wanted me to feel her cheek. I told her it felt very smooth. Then she explained how she made her skin feel that way. She said, “You just wet your skin.” As she said this, she put saliva on her finger and rubbed it across her forearm. She explained that our skin dries out as we age. We can keep it soft by moisturizing it. I was a bit like a psychotherapist. I didn’t say much except to express facilitative comments. She said she was very interested in this and was going to do more study about it. It is hard for me to remember everything she said. I know she  talked about doctors’ knowing these things from their study but that she had learned it on her own through experience. She wanted to know and understand more. She kept saying, “I am really interested in this.” As she talked, she said “this” a lot. At several points, I didn’t understand what “this” was but didn’t stop her.

She made a gradual shift in the conversation. She started talking about the two of us and our relationship. She never asked my name during the entire time. In fact, she used my name several times. On the other hand, it was clear that she did not recognize me as her husband. It reminded me of our previous conversation in which she said, “I think we are going to make a great team.” She made reference to “the other people.” It appeared that she thought we were part of a group at work.

An interesting sidelight is that we were lying next to each other in bed, a very intimate situation. I have no idea where she thought we were. Certainly not in an office somewhere, but she was very circumspect the entire time. It was a very tender conversation without any passionate expressions of love.

She got into this by saying things like, “I feel very at ease with you. I feel I can tell you anything.” I said, “I feel the same way about you. We have a very special relationship.” I kept trying to steer the conversation in the direction of our love for each other. She didn’t rebuff my efforts, but she talked more about her respect for me and not love. It was only late in the conversation after I said I loved her that she acknowledged that she was beginning to feel the same way about me.

Knowing that I would be unable to remember everything that she said, I reached over to my bedside table and got my phone to record our conversation. I am inserting excerpts from that conversation below.

KATE:            I feel more that way now. (That she could tell me anything.)

RICHARD:    More than you used to?

KATE:            I think so.

RICHARD:   I think that’s because we’ve been together so long.

KATE:            Yeah. That’s right, but anyway, Richard, I think we can work together. Not just the two of us but with all the others.

RICHARD:   Who are the others?

KATE:             Sure.

RICHARD:   I think we’ve had a good relationship.

KATE:            I think we have too. And I imagine that it’ll be getting better. I’m feeling more at ease with you. It’s kinda hard to say, but now I’m probably going to be <pause> I have always been honest with you, but I would probably be more (she stumbled on the word she wanted)

RICHARD:    Revealing?

K                    Thank you. Now I could say this to you and ask you to come with the right word and don’t think anything about it.

 

RICHARD:   Good, I’m glad you feel that comfortable.

K                    I’ve always felt fairly comfortable with you, but I’m feeling much more comfortable now. And I think that’s important.

R                   I do, too.

K                    For you and for him

R                   Wait, for me and for Him? Him Who?

K                    You.

R                   I’m so glad we’ve been together a long time.

K                    Well, it’s long and not.

R                   It doesn’t seem as long as it has.

K                    There have been many short times we have worked together.

R                   Well, we’ve been living together though.

K                    Yeah? Right. (expressing her disbelief with a laugh)

R                   We’ve just lived together 55 years.

K                    (again laughs in disbelief) Huh? Don’t throw that on me.

R                   You don’t believe that?

K                    No.

R                   But you do admit we’ve had a good relationship.

K                    Oh, yes. Absolutely! I think from the beginning, it was just ‘Yes, I think he’s just a guy guy, but it wasn’t anything too overhead.’

R                   Now what is it?

K                    It’s getting kinda overhead.

R                   It’s getting overhead?

K                    Oh, yeah. <pause> Oh, yeah. <pause> Much more respect. Liking to be with you. Being willing to say what I really want to tell you. Well, I’ve aways been honest with you.

R                   You know that I love you, don’t you?

K                    You do? <pause> Well, I think I’m loving you.

R                   You do. That’s good. That makes me feel good. I’ve loved you a long time.

K                    Well, I like to be with you so much, so that’s the same. That’s the same. I feel I can always talk with you, be honest with you. And I’m impressed with so many of the things you are able to do. I respect you.

R                   Thank you, Baby.

K                    Well, I’m telling you the truth. The more I get to know you, the more I respect you and like you. And I think that’s wonderful.

R                   I’m so glad.

K                    This is the most  . . I don’t know how to say it. But we understand each other, and we respect each other.

R                   I think we do.

K                    And those are two important things.

R                   And loving each other is important too.

K                    Oh, yes.

R                   You know, this month on December 19 we celebrate the anniversary of our first date in 1961.

K                    WHAT?? 1961??

R                   1961.

K                    That’s a long way. We’ve always connected. <pause> In different ways now. More real honesty. Revealing ourselves and what we think.

R                   You’re very special to me.

K                    You’ve very special to me.

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A Montage of Surprises, Confusion, and Frustration, But a Good Day

People who know me well understand that I like routine and predictability. For more than six months I have been looking for Kate to get up on a schedule. I would definitely like it to be somewhat early. Around 9:00 would work well for me. Since I get up between 5:30 and 6:00 most mornings, that would give me plenty of time to myself and also allow me to spend time with Kate. For a while it looked like she would sleep as late as 11:30 to 12:30. Within the past two weeks she surprised me by getting up between 9:00 and 10:00. More recently, she has slipped back to sleeping late again. That has made me think she is settling into late pattern rather than an early one. But is she really settling into a pattern at all?

Figuring I had plenty of time this morning, I was slow getting Kate’s clothes ready for her. When I checked on her shortly before 9:00, I found that she was up and looking around for clothes. She was confused and had been going through a closet in a guest room where she keeps her dressiest clothes, the ones she never wears these days. She was glad to see me and wanted my help. I took her to the room that we call “Kate’s room.” We used to call it her office, but she gave up any activity of the kind that she would do in an office. It has the closet where she keeps all her everyday clothes. I grabbed one of the new sweaters I had bought the day before along with a pair of pants and walked her back to our bedroom where she could take a shower in our bath.

Her confusion continued. She wanted me to tell her what she should do for each step. As I was doing this, she said, “Who are you?” I said, “Do you mean ‘What is our relationship or my name?’” She wanted my name. I went back to the kitchen while she showered. When I returned fifteen minutes later, she was in bed. She almost always gets back in bed after her shower. Since she had gotten up earlier than I expected, I decided to let her relax a while.

I returned forty-five minutes later. I assumed she would still be in bed, and she was. When she saw me, she said, “Are you my daddy?” I told her I was her husband. She was surprised but didn’t challenge me. I told her I would like to take her to lunch. She gave her customary response, “Where are my clothes?” I showed her and then helped her put them on.

We ate at the Tupelo Grill for lunch. She wasn’t talkative, but we had a nice time. It was three weeks since we had been there, so we had conversation with our server about our respective Thanksgivings. A little later we had another conversation with her about our Christmas plans.

On the way home I turned on the radio. George W. was beginning his remarks at his father’s service. She listened attentively. When we got home, she wanted to stay in the car to listen to more. I told her I would turn on the TV, and she could watch the rest of the service inside. She liked that and quickly became engaged. She especially liked the music, but she was trying to follow everything. She was still watching when the sitter arrived. I was pleased to see that she gave the sitter a warm welcome before leaving.

When I got home, she and the sitter were seated in front of the TV though Kate was working on her iPad. They had not left the house at all. Apparently, the service and follow up afterwards had held her attention. That was a rare event. I was glad to know that she showed such interest. I am sure she couldn’t follow much of it, but she could sense the emotions of the moment.

After coming home from dinner, she started working on her iPad. Several times she asked for my help. At least one of those times, she had accidentally opened a different app. The others, however, involved her having trouble putting the pieces in place. Once was when she first opened a puzzle. The pieces were scattered across the screen, and she didn’t know what to do. This was not the first time this has happened; however, it always surprises me. Since she works puzzles six to eight hours a day and had just finished a puzzle, it seems like her “autopilot” would take over when a new one is opened. She encountered another problem that also seems surprising. There was only one piece remaining. It was the bottom, left hand corner piece and was clearly visible (to me, at least). She couldn’t figure out how to finish the puzzle. I showed her the piece and then showed her the place where it was to go. A few minutes later, she became frustrated and asked me if she could go to bed. It was just before 7:30. I told her that would be fine and got her night clothes for her and helped her get into them. I am hoping this will make it easy for her to get up in the morning. We will need to leave for my doctor’s office by 10:00.

Tomorrow I have my labs in advance of an appointment next week.

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A Good Day

Yesterday morning, I walked into our bedroom at 11:00 to check on Kate. She looked like she was asleep but opened her eyes as I approached her. She smiled and asked, “Who are you?” I said, “Would you like to guess?” She said, “My husband?” I said, “We’re off to a good start?” She smiled. She asked my name and then hers. I told her and said I would like to take her to lunch. She said she was hungry but needed her clothes. I pointed them out to her and asked if she wanted to shower. She didn’t. That helped us get ready more quickly than usual.

She was in a good humor and showed a good understanding of my personality. As we walked out of the house, she spit on the floor of the garage. Then she said, “I know that bothers you.” I said, “What makes you think that?” She said, “You like everything just right.” I don’t say much about this, but she frequently says things about me (mostly my OCD tendencies) that are right on target. It continues to amaze me that her feelings for people and things are so strong even as her memory fades.

At home, in the car, at lunch, and the balance of the day, she frequently asked, “Where are we right now?” As I have said before, this is a common experience. It just occurred more yesterday.

The weather this week and next is supposed to be cold, so I wanted to get her a couple of new sweaters. I took her to a department store not far from the restaurant where we had lunch. I had mentioned this before lunch, and she frowned. She doesn’t care much for shopping. It could be that it is too confusing for her to look at her options and make a decision. After lunch I didn’t tell her where we were going. I just drove to the store. We got out and went directly to the sweaters. I picked out three things in the right size and asked how she liked them. They were fine. She wasn’t excited about having new clothes, but I felt better than we have more options now.

We had dinner with friends we had met at Casa Bella on their Broadway nights. We have gotten together with them on several other occasions. Kate was less active in our conversation than the three of us, but she enjoyed herself. We will be with them this coming Monday night at Casa Bella for their annual Christmas dinner and again next Wednesday for a concert a short drive from Knoxville. It’s good for both of us to expand our social connections.

When we got home, we watched a series of YouTube videos of Christmas music sung by the Tabernacle Choir. She was enthralled by them. When I turned off the music, she talked about how much she enjoyed our being able to share in the music together. As I helped her get ready for bed, we had another special moment. She thanked me “for all you do for me.” She said she thought we were a good match for each other.  It wasn’t until she said, “I think we are going to make a good team.” that I realized she was talking as though we were not married but anticipating it. She was optimistic about our future together and stumbled over her words. I said, “Do you mean ‘mature together?’” She said, “Yes, we’re going to mature together.” Then she mentioned that she was going to want children and thought I felt the same way. As we got into bed, she said, “This is the first time I have felt like a real grown up.” She continued to talk about how good she felt about us. It was interesting that she never asked my name, her name, or the names of her parents. She was absorbed in our relationship, and so was I.

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Special Moments Yesterday

Not every moment of every day is special. Some are discouraging, sad, or trying. As I have noted many times, we have experienced relatively few of those. I find that we have enough uplifting moments to offset those I would like to forget. Some of those involve planned events like our regular dinners at Casa Bella for their music nights or our visits with family and friends. Many of them occur without any planning at all. They just happen without any prior expectation. That was the case yesterday.

It was a day for the sitter. This was only the second time that Valorie has been with us. She will now be our regular sitter on Mondays. I was especially eager to get Kate up a little earlier than usual. As time passed and Kate had not gotten up on her own, I began to think of a new plan for the sitter. I decided to let her sleep until 11:00. That would leave an hour for her to get showered and dressed before I left at noon. It would relieve me of the pressure of getting her up and dressed and to Panera for a sandwich before I left. I would simply let the sitter take her to lunch while I go to Rotary. Assuming it worked, it would be something we could do on a regular basis from now own.

At 11:00, I went into the bedroom and sat down on the bed next to Kate. She looked up at me and smiled. We began a fifteen-minute conversation that for me was as tender a conversation as we have ever had, and she didn’t even know my name.

RICHARD:               “You look relaxed.”

KATE:                       “I am.”

RICHARD:               “I’m glad.”

KATE:                       “Where am I?”

RICHARD:               “You’re in your very own bed in our house in Knoxville, Tennessee.”

KATE:                       “We have a house?”

From this point, we went through our usual conversation, at least in the words that were spoken. She wanted to know my name, her name, and her parents’ names. If you read these posts with any regularity, you can pretty easily grasp the content of the conversation. What was different about this one was the tone. She was very relaxed and sleepy. I responded in kind. It was much more like a father talking with his young child. She was trusting me as the person with the answers to her questions. I am touched by her growing dependence.The difference between this situation and with a child is that she can’t remember. A child can or will learn. That’s not going to happen with Kate.

Our conversation ended when she said she was sleepy and wanted to rest some more. I explained that I would be leaving and that Valorie would be with her. She didn’t remember Valorie, but I told her she was here last week and that she had liked her. I also explained that Valorie would be happy to help her with her shower and clothes if she needed help. She was comfortable with that, and I left her to rest. Equally important was the fact that I was comfortable. I let go of my desire to get her up, dressed, and to lunch. I accepted that this change needed to occur. It enabled me to have an easy conversation with Kate rather than pushing her to get up when she really wanted to stay in bed.

When Valorie arrived, I explained that Kate was still sleeping and talked with her about helping her get up and to the shower and dressing. I made it clear that this was the first time anyone else had helped with these things but that I thought Kate would be cooperative. When I arrived home, they were both in the family room. I walked Valorie to the door. She said she had helped Kate with the shower (not sure exactly how much help she had to provide) and getting dressed and that Kate accepted willingly. I was delighted. I have known we would face this step sometime and wondered how we might make a smooth transition. It turns out to have been easier than I expected. Of course, it may not be this way every time, but it’s a great start. Having the sitter assume this responsibility will ease my stress a good bit. I won’t have to worry about pushing her to get up.

After Valorie was gone, Kate and I sat side by side on the love seat in our family room and looked at one of the photo books of her family. This is one put together by her brother Ken and her cousin Sharon. It is the story of the Franklin Family Veil. One of Kate’s aunts bought the veil in Brussels in 1924 for her wedding. It has been worn by many brides in the family since that time. It contains a bit more narrative than some of the other photo books. I read to her, and she loved seeing the photos. I was touched again to share in that moment.

I try to make a point of moments like these because it is so easy to think her memory loss would prevent our experiencing such pleasures. It is true that there are things we did before that are no longer part of our lives, but much of that is offset by other things that she can appreciate. There will be a time when those will diminish as well. I’m not going to worry about those right now. I’d rather focus on these special moments that still come our way.

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Confused But at Ease

Yesterday I decided to let Kate sleep a little later than the past few days. I checked on her at 11:00 and found that her eyes were open. I asked if she would like to get up. She asked me to give her a little more time. I went back in twenty minutes. She was awake. I told her it was getting close to the time we should leave for lunch and thought she should get up if she could. She indicated she was hungry.

I said something about her having slept later than she had during the time Virginia and Ken were visiting. She said, “Who?” I told her again. She didn’t recognize who I was talking about. I said, “Ken is your brother.” There was no sign of recognition. She said, “What’s his name?” I repeated his name. She usually says she likes the name “Franklin.” This time it meant nothing to her. She did ask where he got his name. I told her from his mother and father and that they were also her parents. She wanted know their names. I told her. She wanted me to repeat their full names. She asked me to do it again. She wanted me to say each name (first, middle, and last) slowly so that she could repeat each one. When I had done this, she wanted to know my name. I told her and told her I am her husband. She was surprised. I told her a little bit about our courtship and then our marriage in her home church. She was still puzzled but accepted what I had said.

Two things struck me about this experience. The first is that it’s one more time that it took her a while to acknowledge that we are married. It’s getting harder for her to remember that. The second is that she continues to trust me as someone she knows. She shows no sign of fear. She seems perfectly comfortable with me. I am grateful for that.

All of this must have taken fifteen minutes. She finally got up a little after noon. She took a shower and then got back in the bed. I got her up just after 1:00. It was 1:45 when we left for lunch. Just before leaving, she walked out of the bathroom with a tube of toothpaste and a toothbrush in her hand and asked, “Are we going to stay another night?” I told her we were. Then I took them back to the bathroom.

The rest of the day went quite well. I saw no indication that she forgot that I am her husband although she did ask my name a number of times. At lunch she said something affectionate and immediately asked my name. Then she laughed in recognition of how strange it sounded to pair those two things. Twice she mentioned that she remembered coming to the restaurant with her mother although her mother had never been there.

There is one other thing I haven’t commented on before. The restaurant where we eat each Sunday has several prominent photos of Frank Sinatra, and much of their music features him. One of the photos was taken when he was arrested for seduction and adultery in 1938. Kate asked me about the photo the first time she saw it. I explained and also said something about his mob connections. I didn’t think much of it, but every Sunday she asks me who he is multiple times. When I say his name, she always responds negatively. Today, for example, she said, “He’s a rat.” Then she said, “I don’t know why I feel that way.” It’s another good example of how well she can hold on to feelings while she so easily forgets names and other facts associated with them.

I was about to finish this post when I recalled one other example of the power of feelings. Last night I played several YouTube videos of Christmas music when I suggested it was time to get ready for bed. She got up from her chair to walk to the bathroom. As she did, she commented on the beautiful music and how special it was that we could share it together. Then she asked my name. A few minutes later she called me by name. She hasn’t completely forgotten it yet.

When she came out of the bathroom, she said, “I’m glad we came here.” A few minutes later she asked where we are and how I found “this place.” I told her I couldn’t remember. She thanked me for bringing her here.

As I was helping her get into her night clothes, she said, “I wonder what my mother would think of this. <pause> I think she would approve.” Then she thanked me and said, “I don’t know what I would do without you. I mean it. I really don’t know how I could do it.”

All of these things are signs that she is still able to feel, enjoy, and appreciate things. I am grateful. We have made the most of that ability in the past and will continue to do so even as the names and recognition of people and places recedes from her memory.

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A Good Last Day with the Franklins

Late yesterday afternoon, Virginia and Ken caught a flight back to Texas. It was a very good visit for us, and, I believe, for them. I really hated to see them go. Given Ken’s own Alzheimer’s diagnosis, one might expect them to be understanding of our situation, and they are. They are also very thoughtful guests and were long before Alzheimer’s entered both of our worlds. They are the only people I know who can visit and make you feel like you are the guest. That’s a good thing; they make you feel special.

For me, the highlight of the visit was the first afternoon when Kate and Ken spent over three hours together going through family photo books. Even though Virginia and I were in the kitchen the whole time, it was special for us to know they were having such a special moment together.

Each day Kate slept late and would have slept later if I hadn’t gotten her up. Yesterday she was especially tired, but she got up without a fuss. I hated to wake her, I felt like the time with the Franklins was too precious to let her sleep too long.

I’ve reported on two recent social situations in which Kate’s conversation has been unusually bold as though she were working to get attention. She had one of those experiences yesterday before going to lunch. I think she was trying to be humorous, but it wasn’t working. It was totally unlike her. It continued for a time at lunch, but she soon settled down.

Kate and Ken have a cousin whose husband had Alzheimer’s. I know that she used to carry small cards that she gave to people letting them know of her husband’s diagnosis and asking for their understanding. I’ve kept that tucked away in the back of my mind for a  long time but haven’t felt a need for them. These recent experiences have led me to believe otherwise.

After returning from lunch, we had another hour to relax before the Franklins left for the airport. I have to admit to more than a bit of sadness as their departure approached. I can’t predict if and when the four of us might be together again. As I have said in other posts, I know it is unlikely that we will make another trip to Texas. I also know that Kate will not be the same if they are able to visit us again. In that sense, this visit was another of those “last moments” that become treasured memories.

There were a number of things that made our time together special. The obvious one is the sibling relationship between Kate and Ken. It is also the longevity of our relationship as couples. We have lived apart all that time, but we have visited in one another’s homes many times. We have shared responsibilities of parent care. Now there is something else that unites us. We are all living with Alzheimer’s. Throughout their visit, I could sense that connection. Ken and Virginia were very understanding about things like getting started in the morning and my having to step aside to help Kate get ready. It was a little like having a support group at our house for the entire visit. I’ll miss that.