Another Marker

Last night before turning on another segment of Fiddler on the Roof, Kate went to our bathroom to brush her teeth. As she passed me in my chair, she said, “Are you my cousin? . . .My brother? I said, “Closer than that.” She couldn’t guess. I said, “I’m your husband.” She said humorously, “My husband? Oh, I am in trouble.”

Over the past few days, she has appeared to be forgetting that I am her husband. It is obvious now. She is clearly forgetting we are married. At the rate things are going, that will soon be forgotten; however, I don’t expect this to change her feeling for me.

One reason I feel this way is that she still retains a strong attachment to me. I am a major source of her security at the moment. I have observed this in her growing dependence on me. More specifically, she verbally expresses this dependence. For example, when I returned home to relieve the sitter yesterday afternoon, she told me she was glad to see me. Two separate times she added, “I feel good when I am with you. I feel safe.” I don’t fully understand what makes her say she feels safe, but she doesn’t know where she is or who are the people around her but me. She knows that I provide the answers to her questions and control where and when we go places. I have become her lifeline. I don’t think I need it, but that provides an additional reason for me to do the very best I can to care for her.

At least she’s not aware. (NOT)

Twenty years ago when my mother was living with dementia, I recall someone’s saying, “Well, at least she doesn’t know.” That was meant as a word of comfort suggesting that she would not have to experience the mental anguish that can accompany the disease. At the time, I felt that wasn’t right. I remember how frustrated she was when she couldn’t remember things or do things that she was once able to do.

I’ve  had much more opportunity to observe Kate, and I have confirmation that I was correct. During the last stage of the disease, people may not be aware of their impairment. For most of the way, however, they are quite aware of many things including their own failings.

Next Tuesday, it will be 7 years and 8 months since Kate’s diagnosis. She is still aware that she is unable to do all the things that she used to do. I don’t have to look far for examples. I checked on her a little before 9:30 and discovered that she was just getting out of bed. I was pleased since she has been sleeping much later. I went back to the kitchen without disturbing her. She likes to wake up slowly, and I thought it best not to rush her.

At 10:00, I went to our bathroom to brush my teeth. I noticed that she had picked up the clothes that I had laid out for her last night but left the top on her chair. At the time, she was in her room. I took the top to her. She was concentrating on her clothes, trying to make sure that she had everything she needed to wear before she got in the shower. I asked if I could help. She said, “I need something to wear.” I told her she had just about everything but a top and that I had it. She had laid the clothes out on her bed. She had the pants I had put out for her and an additional pair. Beside them she had one sock. She realized she didn’t have everything and was trying to figure out what else she needed. After I walked in, she decided to lay out her clothes on a chair next to the bed. She was confused by the fact that she had two tops. I told her I would take one of them and let her wear the other. She took one and put it on the chair. I started to leave the room, and she asked me to wait. She wanted to do this herself, but she wanted me there in case I she needed me. It took her a long time to do this. When she was finished, I said, “You’ve got it.” She gave me a doubtful look and said, “We’ll see.” She, too, knows there are times when she thought she had everything together only to discover she was wrong.

It is painful to watch her work so hard on what we would think to be a simple task, but I still like to give her a chance to do as much for herself as she can. She seems to appreciate this. One thing I do know. She does recognize she can’t do what she used to do, and it bothers her. There will no doubt be a time when she doesn’t.

Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.

Two Events That Brightened Our Day

Yesterday our pastor had invited Kate and me to lunch at noon. Normally, that would lead me to be concerned about Kate’s waking up in time to get ready. That was no problem since we had two of the work crew who installed our new windows  finishing a couple of things. They were here at 9:15. I let her know that one of the workers was in the house and suggested she take her shower and dress in our bedroom and bath. She got up easily which gave us time for almost an hour at Panera before meeting our pastor.

We had a grand time at lunch. Our pastor and his wife had just returned from a trip to Rwanda where their daughter is doing research related to post traumatic stress disorder. We enjoyed hearing about her work as well as their hike through a gorilla preserve. We also shared some of our favorite travel experiences.

After lunch, we went directly to our car dealer’s for a routine service appointment. They have a nice waiting area where we stayed while they worked on our car. I think Kate thought of it as another alternative to Panera or Barnes & Noble. I know at one point she said something about its being a very nice place.

We relaxed at home for an hour before going to Casa Bella for jazz night. The music was unusually good, and we had a guest from Houston at our table. She manages a project that her IT company has with the state of Tennessee. On a previous visit to Knoxville, she had eaten at Casa Bella and learned about their music nights. Normally, she would have flown back to Houston in the afternoon but stayed over a night for jazz night. She is an interesting person, and Kate always enjoys meeting someone with a Texas connection. She sat beside Kate. When she asked her where she was from she couldn’t immediately remember the city. I jumped in and said, Fort Worth. After talking with her a few minutes, Kate asked her where she was from although she had just finished telling us that she was from Houston. No one acted as though they noticed anything inappropriate. I suspect the couple with whom we always sit noticed since they are aware of Kate’s Alzheimer’s.

When we got in the car for home, Kate said, “It’s been a nice trip so far.” She often thinks she is in Fort Worth. I suppose that is what she was thinking.

At home, I stopped in the kitchen for a moment as Kate walked into the family room. She called to me. I went to her, and she said, “I’ll follow you.” She obviously didn’t know how to get to our bedroom. It’s possible that she didn’t even recognize that we were home.

Even with this confusion, we had had a nice day. I am very glad she can still enjoy so many things.

This morning she surprised me when she was ready to leave for Panera shortly after 10:00. She was holding a pair of socks in one hand. I said, “I see you have some extra socks.” She said, “I always need extra socks.” I needed to do a few things before we left and asked if she could work on her iPad while I finished up. After she was seated, she said, “Could you hold these” and handed the socks to me. I said, “Yes” and took them from her. We had  time to get to Panera where we saw several of our friends from a nearby Catholic church who are regulars. We hadn’t seen them in a couple weeks and had been wondering about us. I told them that “we” had been sleeping a little later recently.

Memory Loss

Kate is moving quickly to a complete loss of names. At lunch and on the way home today, she quizzed me about my name, her parents’ names, and our children’s names. It isn’t as thought this is the first time, but she seems to be struggling even more now. I don’t mean that she expressed any outward frustration over her obvious memory loss. She didn’t. It was the whole nature of the conversation that made her efforts seem like a quiet struggle.

She began by asking my name. When I told her, she asked me to repeat it again. Then she tried without success. At one point, I said, “Could I ask your name?” She had to think a minute before answering, but she got it.

Then I asked if there were any other names she would like me to help her with, “like our children’s names.” She said, “We have children?” I told her we did and proceeded to tell her their names and where they live and about their spouses and children. Her eyes began to glaze over. I said, “I think I may be covering too much.” She nodded agreement.

When we got up to leave the restaurant, she said, “What is his name?” I didn’t know who she was talking about and asked her. She said, “The one you were talking to.” It had been about ten minutes since I had introduced her to someone I knew from UT and the symphony. She was frustrated and said, “You could help me if you just gave a straight answer instead of going off on these other things.” I backed off, and nothing more was said. This is not the first time I have asked her to explain something she has said. I don’t think she has ever explained. She just drops it. I think it is too hard for her to remember what she was trying to say.

On the way home, she told me that she wanted to take a nap when we got home. Sometimes she says this but forgets. Today she got in bed after brushing her teeth. She was in bed when the sitter arrived.

She continues to pick up things, mostly clothes, and take them in the car with us. Today she brought a wool turtle neck sweater and a pair of brown shoes. Getting out of the car a the restaurant, she asked about taking the sweater inside. I told her I didn’t think she would need it. She left it. When we got home, she asked if she should take the sweater inside. I told her that would be a good idea and suggested taking in her brown shoes as well. I brought in two decorative pillows from our bed that she had brought with her the other day.

This morning she had rummaged through one of the drawers in my bedside table. I didn’t see anything he had taken out, but I have recently found several things she has taken out of these drawers. My suspicion is thatn she  is confusing my table with the one she has on her side of the bed. That reminds me that the other night she got in bed on my side without any awareness she had done so.

More Confusion

Kate got up without my having to wake her yesterday. We made it to Panera and also got her lunch there without any rush to get back home for the sitter. On the way there, she said, “What would you like me to call you?” I said, “Do you mean my name or my relationship to you?” She wanted to know my name. That occurred several other times during the day. I might not even mention it, but she was also experiencing more confusion yesterday. That and the changes in her sleeping tell me we are headed for the part of this journey I would like to avoid.

A few minutes before Anita arrived, I told Kate that I would soon be leaving for Rotary and the Y. She gave me a look of displeasure. I told her I didn’t like leaving her, but I appreciated her understanding. She seemed to accept that and asked what she could do. I told her that she and Anita could go to Panera or they could spend some time with her family photobooks. Her eyes lit up at the mention of Panera. She said she wanted to brush her teeth and asked me which bathroom she should use. I chose the one she uses most often.

She was still brushing her teeth when Anita arrived. I went back to tell her and to say good bye. Then she asked me if he could use the toilet. I may not mention it much, but one of the changes over the past few months is asking if she can do one thing or another. At first, I thought she was asking for permission. Now I am reasonably sure that she doesn’t trust her own judgment and just wants to know what she should do. Later in the day, she asked if she should take her nightgown with her to dinner. Most of the time she doesn’t ask. For example, on Sunday she brought two bed pillows with her when we went to lunch.

When I was about to leave for Rotary, I said goodbye and walked toward the door. She called my name. That’s a good example of the fact that she doesn’t always forget my name. I turned around to see what she wanted. She whispered, “Aren’t I going with you?” I reminded her that I was going to Rotary and that Anita would take her to Panera. She asked, “Can’t we follow you?” As usual, Kate was very cordial to Anita. I didn’t detect any sign of a problem with her. It’s just that she feels better when I am around.W hen I returned home, I found Kate and Anita trying to locate photos on Kate’s iPad. They had apparently found them while I was gone but couldn’t figure out how to get back to them.

Kate looked more confused during the evening. She didn’t display any indication of anxiety or concern about her memory, but she just looked like she didn’t know what to do next and wanted my guidance. She usually works on her iPad right after dinner. She started but quit in a few minutes. I think she is having more trouble operating her iPad and felt like taking a break. I picked up one of her photobooks. She enjoyed that. When it was time for me to take my shower. She returned to the iPad.  I suggested it was time for her to get ready for bed. She readily accepted that. I am now staying with her as she puts on her gown. She gets confused as to what to do. She frequently takes off the pants she has worn that day. Then she puts her night gown on. This was followed by putting her pants back on under the gown. Everything is getting more challenging for her. I am glad to help, but it is sad to watch her growing dependence.

Another Episode of Anxiety

We had a very nice evening last night. After dinner, Kate spent an hour or more looking through two of her photobooks. As in the past, it was just like seeing them for the first time. We followed that by watching the third of three DVDs of her family’s home movies and videos. This video had just as much impact as the first two. After that, she dressed for bed and then went to the bathroom. When she returned, I noticed that she seemed to be breathing heavily. Then she began to make audible sounds as she breathed. It was like, “Oh . . . Oh . . . Oh.”

We got into bed, and she said tearfully, “I’m sorry I didn’t get everything done.” I said with a soft, comforting voice, “That’s all right. You didn’t forget anything. There wasn’t anything for you to do.” She didn’t calm down immediately. I asked if she could take some slow, deep breaths and relax. That is something she does when she has an attack of acid reflux. I held her for a few minutes and began to talk about her family that we had just seen on the DVDs. That led to talking about our marriage and the good times we have had. In a short time, she relaxed.

I wish I knew what brings on these attacks. This is the third one in the past two or three weeks. Each time it seems to occur without my being able to connect it with anything specific. The fact that she apologized for not doing something suggests she imagined my asking her to do something that she didn’t do. I think I’ve mentioned before that she really wants to please me. That has caused me to try not to say anything when she forgets to get ready to go somewhere or wear clothes I have picked out for her. It makes her feel bad.

Each time something like this happens, I wonder what the future holds. That is truer now than a few months ago.

Bedtime Conversation

Kate got into bed to work a few more puzzles before going to sleep.

KATE: “I like it here.”

RICHARD: “I do too.”

Five Minutes Later

KATE: “What’s the name of this hotel?”

RICHARD: “This is our house.”

KATE: “You could have fooled me.”

Another Five Minutes Later

KATE: “I just like your being here even if we aren’t talking.”

RICHARD: “Me, too. It would be lonely without you.”

KATE: “Do you know my name?”

RICHARD: “Yes. Do you?”

KATE: “Kate. What is your name?”

RICHARD: “Richard.”

KATE: “Oh, I knew that. I just couldn’t think of it.”

More Confusion, But a Good Day

Yesterday we went to Nashville to visit our friend, Ellen, who had a stroke three years ago next month. She had lived in Knoxville until that time. She had the stroke while visiting her daughter in Nashville and has never returned home. We try to visit about once a month. She is now living in a memory care facility. This is the fifth place she has lived since we started visiting her.

Kate got up a little later than I had wanted, so we ate lunch before leaving. When I hadn’t heard any signs that she was up, I went back to the bedroom to check on her. I discovered that she was up and taking a shower. I glanced in the bathroom door to see a mound of clothes on the floor in front of the shower. She often takes her clothes for the day into the bathroom while she showers. What was unusual this time was that she had a variety of clothes, mostly winter clothes. They also included four or five tops and a couple of pants. I came back to the kitchen. When I went back fifteen minutes later, she was sitting on the bed. The clothes that were previously on the floor of the bathroom were now on the bed. It turned out that she had everything but her underwear. I asked if she would like me to get them. She did. When I returned, she said, “Thank you, whatever your name is.” I asked if she would like me to tell her my name. She said yes, and I did. On the way to lunch, she asked my name. I told her and then said, “What is your name?” She took a moment to think and then answered correctly.

She was very quiet on the way to see Ellen. When we arrived, she said, “Does this place have a name?” I told her we were in Nashville and gave her the name of the facility. This way of asking for a name is becoming more frequent now. Mostly, she says, “Where are we?” She has a similar expression when we are at restaurants. She says, “Does this place serve food?” This is a sign that she is ready to eat and thinks the restaurant is taking too long. She has no concept of time, so usually, it hasn’t been long since we ordered that she asks the question. Sometimes it occurs right after the server has walked away after taking our order.

Our visit with Ellen was one of the best we have had. I wish I could say that is because Ellen has improved. That wasn’t the case. In fact, her speech seemed to be worse than the last time we visited a month ago. At the time of our first couple of visits almost three years ago it was very difficult to understand her at all. Over the next year, she improved a good bit, but I would say we were still unable to understand about a fourth of what she said. In February of this year, she had a couple of seizures. They affected her mobility and her speech. Yesterday we could understand very little of what she said.

We got off to a good start. When we walked into her room, Ellen was lying down on her bed. Although I know her daughter had told her we were coming, she had forgotten. She was quite surprised to see us and very emotional about our being there. I don’t know that I have mentioned that Ellen is a very outgoing, take charge kind of person who had many friends in Knoxville. Because so many of her friends are about her age and travel to Nashville is a bit much for many of them, she has had practically no visits from them. We know of only one other couple from Knoxville who has visited her. In addition, most of the others in her memory care unit are unable to converse much. She must be starved for conversation with friends.

It was interesting to watch Kate’s interaction with Ellen. She took much more initiative in the conversation than she has done previously. She brought up the fact that the two of them used to have lunch together every Monday while I was at Rotary. It is interesting that this memory has not disappeared. She remembers other things about our relationship with Ellen and her husband, Gordon, but only when I bring them up. The Monday lunch is more firmly embedded in her memory. Something else was different about Kate yesterday. There were quite a few times when Ellen struggled getting her words out. In almost every instance, Kate tried to encourage her. She said, “Just relax. Take your time. You’ll get it.”

After we had been there a good while, I asked Ellen if the staff played much music for the residents. She said they didn’t. I suspect she just doesn’t remember. Ellen had been a choir director for almost 40 years. She was also a singer and played the piano. We began to talk about music. I mentioned that I remembered her son’s singing “Danny Boy” at a piano recital when our children were taking lessons. Then I remembered that I had a recording of “Danny Boy” on my phone. I played it for her. All three of us enjoyed it. That led to my playing several other pieces. It was a nice interlude in our visit. The music was beautiful. Conversation for Ellen was challenging. We let the music speak for us. At one point, Ellen reached her hand out to Kate who clutched it. I could see tears in their eyes. It was a touching moment to watch and be a part of.

Not long after that one of the staff came in to get Ellen up for dinner. I asked if she knew Ellen was a musician. She didn’t know a thing about her background in music. When I told her she was surprised. She said she was glad to know and would pass that along to the activities director so that she could take advantage of that. I wonder how many people in places like this are not fully appreciated because the people working there have no knowledge of who they were before their memory problems. I suspect this is true for most.

We left Ellen’s and went directly to dinner before driving back home. We stopped at McCormick and Schmick’s. As we waited for our meal, Kate looked across at me, put her hands around her mouth like a megaphone, and mouthed the words “I love you.” I told her I love her too. Then she said, “Tell me your name.”

The ride home was unusual. Normally, we drive this distance with very few words. I usually play music that I know Kate will enjoy. Last night, she was talkative. In fact, we talked most of the way back home. It got its start as we were leaving the restaurant. Our daughter, Jesse, called to check in. She updated us on her family’s recent trip to Florida. Kate was happy to hear from her and to know they had a good trip with the family. That must have prompted her to think about the good things in our lives. She talked about our marriage and how fortunate we are to have found each other. She talked about both of our children. I reminded her that our son, Kevin, and his family have just returned from an exciting trip to the Grand Canyon, Bryce Canyon, and Zion National Park. It makes both of us happy to see our children enjoying life and moments like these with their children.

As we neared our home, Kate said she was tired. Then she mentioned she wanted “to do some work” before going to bed. She quickly added, “You know the kind of work I mean.” I did know, working on jigsaw puzzles on her iPad. We had had another good day.

More Confusion

Kate got up from her nap right after I uploaded the previous post. She was ready to get out of the house, so we drove over to Panera. On the way, she asked me to tell her my name. Then she asked me her name. After I said Kate, she filled in the rest. Then she asked my name again. She tried to repeat it and couldn’t. When we got to Panera, she asked the name of the restaurant. Several times over thirty minutes she asked again. She also asked my name again as well as her own. Then she asked my parents names. I thought it was strange that she wasn’t working on her puzzles. I always set up the iPad with a puzzle that is ready for her. Apparently, she left the iPad inactive for so long that it went to sleep. After a while, I asked her why she wasn’t working puzzles. She didn’t realize she could. The iPad was sitting right in front of her. She hadn’t noticed or noticed and didn’t remember how to start it. I turned it on for her, and she is working the first puzzle, and we have been here almost 45 minutes.

Although she has asked almost all of these same questions other times, she seems especially confused today. Each time she asks for the same information, I get the impression that her lack of memory is troubling her. I hope we aren’t preparing for another anxiety attack tonight. As I said in my previous post, I hope the evening at Casa Bella saves the day.