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The Longest Time Kate Has Not Remembered Me As Her Husband

The past couple of days have been similar to a few other days this past week. Once again, Kate was up early. Shortly after getting to the bathroom, she said, “Who are you?” I gave her my name and told her I was her husband. She said firmly, “No.” I said, “I’m a friend, and I can help you with anything you need. She didn’t ask again until we were on the way to Panera around 9:00 when she asked, “Why am I with you?” I said, “Well, you’re my wife.” She gave me a look of astonishment and said, “What’s a wife?” I explained, but she was not ready to accept that we are married. I said, “Let’s say we’re very good friends.” That usually works, but it didn’t this time. She didn’t want to hear that either. At Panera, the subject came up again with the same reception. Except for her reaction each time I told her we were married, she acted very normally with me. Nothing would have suggested that we weren’t husband and wife.

At lunch, I said, “I think I might make you my girlfriend for life.” She was insistent that would not happen and told me not to say anything more. I didn’t until we were on the way home from dinner when she said, “Why am I with you?” as she had done that morning. I gave her a similar response and she did the same. I didn’t say anything more until she was in bed. I sat down on the bed beside her. She smiled at me, and I said, “I love you. Do you know how long we have been married?” She smiled again and said, “How long?” That was the first sign of recognition the entire day.

Kate started the day even earlier this morning. She was awake at 6:20 when I got up. I asked if she wanted to got to the bathroom. She said, “Not right now.” I told her I would be in the bathroom and to call me if she needed me. I had just gotten to the bathroom when she called.

She used the toilet and then asked, “What now?” She pointed to the shower. I hesitated a moment because it was so early. I knew she would want to go back to bed. Sometimes, however, she doesn’t want to shower. I quickly decided this was an opportunity I didn’t want to pass up. I told her I would get the shower ready for her. Before getting in, she asked, “Who are you?” When I told her my name and that I am her husband, she didn’t believe it. I told her we were friends. That worked.

After her shower, she wanted to lie down again. I turned on an album of cello adagios at a soft volume. I dressed and told her I would be in the kitchen and to call me if she needed anything. I asked if she wanted me to turn off the music. She said, “Oh, no. Please leave it on.” It was one of a number of reminders in the past few days of how much she enjoys music. It is now 8:30.

BREAK

It is now 10:15. Right after my earlier entry, I heard her say something. I went to the bedroom. She hadn’t called me. We spoke for a few minutes. She surprised me when she wanted to know who I was. I gave her my name and told her I was a friend and that I could help her with anything she needed. She didn’t show any signs of wanting to get up, but it also didn’t look like she was ready to go to sleep. I asked if she wanted to get up. She said she did but needed some clothes. I told her I would get them. She was surprised that I would know where to find them. I told her I knew a lot about her and that I knew her parents. She asked their names. Then she asked my name. I said, “Kate.” She recognized her name and asked for her full name. I said, “Kate Franklin” (her maiden name). I got her dressed without a problem. Even if she didn’t remember that we are married, she clearly trusts me.

The first real spark of life came when she reached the family room. She noticed all the usual things, the room, the flowers, the flowers on the patio, the back yard, and the photos. We spent about fifteen minutes just looking around as she enjoyed what she was seeing. When we started for the kitchen where I had laid out her morning meds, she said, “Don’t you hate to leave this place?” I explained that it was ours and that we would be coming back after getting her a muffin. She was surprised and happy.

We are now at Panera. She stopped working her puzzles and is finishing up her muffin. That means we will probably head back to the house shortly. We won’t be there long before going to lunch. She is happy. I am happy. I am optimistic about the rest of the day.

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A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

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Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”

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Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

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Early Morning Conversations

Day before yesterday, Kate was awake around 3:30. The same thing happened this morning shortly after 4:00. Both days we had the kind of conversation that I have reported on before. She went through the usual questions. “Where am I?” “What’s my name?” “Who are you?” She did not seem anxious at all. In fact, this morning our conversation began when I heard her laugh. I asked what was funny. She said, “The two of us are just lying here.” I’m not certain why that was funny. She didn’t say, and I didn’t ask. I find that asking “why” questions is always unproductive. She can never come up with an explanation though she sometimes says, “I don’t know.”

Both conversations were very repetitive. By that, I mean that she asked the same questions very closely together over and over though not in rapid-fire succession. They were very relaxed the way you expect for a conversation in the middle of the night. Here’s an example.

Kate:              “Where am I?”

Richard:        “You’re right here in our home. This is where we live.”

Kate:              “Oh, good. <pause> Where am I?”

Richard:        “This is our home. We live here. We’ve lived here for twenty-two years.”

Kate:              “Oh. <pause> Where am I?”

During the conversation, I also mentioned that we live in Knoxville and that we have lived here forty-eight years. Several times she also asked her name as well as mine, but her focus seemed to be on her immediate surroundings.

We talked about forty-five minutes night before last, not as long last night. Each conversation ended when she gradually stopped talking and went back to sleep.

The repetitiveness of her questions is an indication of just how short her short-term memory is at this stage. I have also noticed it in other situations. Sometimes her memory works as though it is controlled by a switch that turns off right after you tell her something. Other times it is like the switch is turned on and off again quickly. For example, yesterday we looked at a few family photos on our entertainment center. She pointed to one of her mother and said, “That’s my mother.” She looked at the next photo of her grandfather and asked who he was. I told her. Then she looked back at the picture of her mother and asked, “Who is she?” We had just seen the picture of her and her brother on the cover of her “Big Sister.” She recognized herself immediately. A few minutes later. we looked at the same picture on the entertainment center, and she didn’t recognize herself. Similarly, she will know my name one minute and not the next. It’s just another mystery of the way the brain works – or doesn’t.

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Kate doesn’t always remember I’m her husband, but she still feels secure with me.

It is impossible for me to know how much of the time Kate remembers that I am her husband. I used to be able to identify specific moments when she didn’t. For a while I noticed these moments were longer in duration. More recently, she has brief moments when she knows and doesn’t know. She used to ask my name and our relationship a lot. Sometimes she still does that, but she asks much less frequently than before. She seems to be adapting to not knowing.

What I consider of greatest importance is that she continues to recognize me as someone with whom she is familiar and trusts. Even in those moments when I know she doesn’t remember I’m her husband, she is very comfortable with my helping her with toileting, showering, and dressing. Increasingly, she has become more comfortable just having me around. That has been obvious in her reactions to my returning home after the sitter has been here. In those cases, she has been very relieved when I walked in.

This emotional dependence is also evident in lots of little things that occur on a daily basis. For example, yesterday I had a United Way committee meeting during the lunch hour. Our sitter was scheduled to arrive at 1:00, and I needed to leave the house about 11:30. I asked a church friend, Martha, if she would take Kate to lunch and get her back home for the sitter. Kate has known and liked her for a long time. They used to eat lunch together regularly when Kate was the church librarian and Martha was an assistant to one of the pastors.

It had been at least six months since they had seen each other, and Kate didn’t remember her but had retained a good feeling for her. When Martha arrived, Kate greeted her as naturally as I had hoped. I knew everything would be all right, and it was. Although I had told Kate she would be going to lunch with Martha while I went to my meeting, Kate assumed that I was going to lunch with them. When she discovered I wasn’t, she had a sad look on her face and said, “You’re not going with us?” I told her I was going to a meeting. She said, “I’m going to miss you.” I told her I would miss her too, but I knew that she and Martha would have a good time together. As she got in the car, she said, “I’m almost embarrassed to say it, but I’m going to miss you.”

As I said, this is a little thing, but I took special note of it because she seemed so comfortable with Martha. I hadn’t expected her to be concerned that I wasn’t going with them. I am sure their lunch went well. I haven’t talked with Martha, but I will.

At dinner last night, Kate asked my name. Then she tried to ask our relationship, but she couldn’t figure out how to say it. I said, “ Do you mean ‘How are we related?’” She said yes, and I told her we were married. She said, “No.” I said, “What about being good friends?” She didn’t like that and suggested that we might be like cousins. Then she said, “But that wouldn’t be true.” Then I suggested that she think of me as a helper. At first, she liked that. Then she changed her mind. About that time our food arrived, and we never finished the conversation.

After we were home, I had the impression that she still did not think of us as a married couple. Then our son called. We had a nice conversation with him. Our granddaughter had begun her freshman year at TCU on Monday, and he updated us on how the move had gone. During that conversation, it must have been clear that we are married. She didn’t express any concern or doubts about our relationship the rest of the evening.

It strikes me that she must be experiencing this kind of shift from knowing and not knowing other things as well. That would include other people, our house, and where we are. There were times yesterday that she thought our house was someone else’s house. She has never said anything that suggests she perceives these shifts as strange. What I do recognize are those moments when she doesn’t seem to know anything. That is when her anxiety attacks occur.

This very morning brought another illustration of her dependence on me as a source of security. She had gotten up early to go to the bathroom and gone back to bed. About forty-five minutes later, I heard her call for me. When I reached her, I asked if I could help her. She said, “I don’t know.” In the past, this is what she has said when she was have an anxiety attack. The difference this time is that she didn’t seem to be frightened or unnerved as she has before. I asked her if she would like to bring my things to the bedroom and stay with her. She said she did, and thanked me when I returned. Then she asked my name. I told her. Over the next thirty minutes, she asked the same question again. She didn’t ask, but I got the impression that she didn’t remember our relationship. She did, however, tell me she was glad I was with her. In this case, I wasn’t doing anything but sitting next to her in my chair as she tried to go back to sleep. It took quite a while before she was asleep, but she was relaxed.

In the past few days, I have also noticed an increased desire to hold my hand while we are out. She has said, “I want to make sure I don’t lose you.”

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Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

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I spoke too soon.

Not long after uploading my previous post, I went back to the bedroom. I saw that Kate was awake and walked over to her. She was having a similar, but milder, attack like those she experienced the past four mornings. I said, “Are you all right?” She said, “I think so. I don’t know.” I told her I would like to help her if I could. I asked if she would like me to bring my laptop to the bedroom and stay with her. She nodded. I returned and put on some music.

She never went back to sleep. I doubt that she had been to sleep since getting up to go to the bathroom at 7:45. Around 9:30, she sat up on the side of the bed. She was still confused, but she didn’t seem to be troubled the way she was earlier. She said, “What now?” I told her I thought it might be good for her to get dressed and get her something to eat. I mentioned getting a muffin. She didn’t say anything, but she looked as though she had never heard of a muffin.

I helped her to her feet and told her I wanted to show her something. We walked hand-in-hand to the hallway outside our bedroom. We stopped at a picture of her grandmother. I told her this was somebody very important to her. Then I explained that she was the first member of Kate’s family to attend TCU. She was pleased about that. I was glad to see her response because a few days ago I mentioned TCU, and it didn’t mean anything to her. That was a first.

After talking with her about her grandmother, I focused her attention on the next photo. It was her mother when she was around 19 or 20. Kate didn’t recognize her but was taken with the picture. As she often does, she noted her mother’s eyes and smile. She commented more extensively than usual on this and other pictures that I showed her. I can’t remember exactly what she said, but she interpreted her mother’s personality based on what she saw in her mother’s face. By this time, she seemed just fine.

We went on to two other photos, one of her grandfather on her father’s side and then her father. From there we walked into the family room where I showed her a picture of our daughter’s twin boys when they were about 5 or 6. As we entered the room, she said, “You’re really helping me.” She always likes children whether in person or photos. Thus, she was enthralled at the twins’ picture. Again, she tried to interpret their personalities from what she saw.

I took her to the sofa and asked her to sit down so that I could show her something else. I picked up the “Big Sister” album and called her attention to the cover picture. This time she didn’t recognize either herself or her brother, but she was taken with the children, especially their eyes and smiles.

We talked about them for a few minutes. Then she said she was cold. She was still in her nightgown and bare feet. I suggested we get her dressed. I helped her stand up and, as we walked to the bedroom, she said, “I’m bouncing back thanks to you.” I was particularly struck by her recognition that she was “bouncing back.” It had been thirty minutes since she had gotten out of bed. I was surprised that she could remember how she felt that long ago. Once again, we had found our way out of what might have been a crisis. It’s a relief when this happens.

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Another Morning of Anxiety

As I have described the past three mornings, yesterday Kate’s memory was almost completely blank again. In some ways this isn’t unusual. Over the past year she has often not known where she is or who she and I are when she wakes. The difference the past few days is the anxiety that accompanies it. In the past, I would tell her. Then she seemed to be all right even though she might ask the same questions again right away. During each of the past few days she has been more concerned, even frightened, about not knowing these things. The first experience on Saturday was the most intense. It also lasted an hour.

Her experience yesterday was different in that it was milder and shorter in duration. She was very sleepy. I didn’t attempt to show her any pictures of her family. I focused primarily on comforting her. I did play the same music I had played the previous days. I got in bed with her. She began to relax and fell asleep within fifteen minutes. I brought my laptop back to the bedroom and stayed with her until it was time for lunch. She was fine when I got her up.

We met one of our associate pastors and his wife for lunch at Casa Bella. Kate has always liked him and his wife. She wasn’t talkative, but she enjoyed being with them. They probably would never have imagined the state she was in a little earlier. Her ability to bounce back is another way in which we have been fortunate.

This morning at 7:45, she started to get up. I went to the bedroom. She was unusually alert and seemed like she didn’t need my help. I walked her to the bathroom and back to bed. She thanked me and said, “You’re really a nice guy.” She is asleep again. We’re off to a good start. I’m hopeful that she will be fine when I get her up for lunch.