Posted on

Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

Posted on

Confusion and Something New

Yesterday Kate and I had a nice day although it began with her not knowing that I am her husband. She got up on her own after I had played about fifteen minutes of soft music. My video cam alerted me to the fact that she was getting up. I went back to the room where she greeted me very normally. She asked about her clothes, and I told her they were on the chair beside the bed. As I helped her up from the bed, she said, “Are you my daddy?” I told I was her husband. She was surprised but did not seemed especially disturbed, just confused that she didn’t know/remember that. I decided not to make an issue of it and walked her to the bathroom where she took a shower. On the way she asked again if I were her daddy. When I said I wasn’t, she asked, “Where is he?” I said, “Texas.” She said, “Where are we?” I told her we were in Knoxville, Tennessee where we live. She looked puzzled but did not say anythng more. After her shower, I helped her get dressed. This was one of those times she wanted to do things herself but kept asking for my help.

I don’t recall our talking again about my being her husband until we were at lunch. She was in a playful mood and teased me a bit. In response to that, I said, “I would marry you again if I could.” She reacted as though that would be terrible. I said, “You wouldn’t like that?” She gave me a look that I interpreted as “Are you kidding?” Then I said, “We could just keep on living together.” She reacted quickly with a disapproving look and said, “I’m surprised you would even say that. What would your mother say?” Isn’t it interesting how powerful such feelings are?  This is coming from deep within the recesses of her mind.

In the course of our conversation I mentioned our children. She asked their names and wanted me to tell her something about them. We never got back to talking directly about my being her husband, but it became clear that she recognized that and was happy about it.

I think I have mentioned that she is sometimes confused about the words she wants to use. Sometimes she uses a word that is obviously the wrong one. Often she recognizes it is wrong and will say, “You know what I mean.” Sometimes I do know. Sometimes I don’t and say so. Other times I say I know when I don’t and hope that when she says more, I will understand.

Yesterday I was surprised when something new happened. She didn’t understand the meaning of two words I used in our conversation. The first occurred when I said that someone we saw at another table looked like a student. She said, “What’s that?” I helped her understand by reminding her (she doesn’t remember) of the time she was teacher. It wasn’t long before she asked me what the men at the next table were talking about. I told her I didn’t know, but it looked like they were businessmen. She said, “What’s that?” Then I explained what a business is.

The night before she asked the wife of the couple we had dinner with what the child at a nearby table was holding. She told Kate that it was a phone. Kate asked what she was doing with it. She explained that the child was probably playing a game. I suspect part of Kate’s not understanding what the child was doing relates to her eyesight. I can’t tell how much relates to her Alzheimer’s and how much is a result of the cataract in her left eye.

Twice yesterday afternoon, she saw her iPad and asked me what it was. I told her it was her iPad, and she said, “What do you do with it?” I told her she could work jigsaw puzzles on it and opened the program for her. She continues to be able to work her puzzles, but it is getting more difficult for her. It is like many other abilities. Sometimes she gets along fine. Other times she runs into problems.

All of these things signal how much her world and mine are changing. I can’t help wondering what life will be like six months from now but not really wanting to know.

Posted on

Catching Up

I observe so many examples of “Living with Alzheimer’s” these days that I forget to document them for the blog. That’s a special problem when we have very active days as we had over the weekend. With our trip to Nashville on Saturday and a play yesterday afternoon, I failed to note several things.

One of those occurred yesterday morning. I thought it was noteworthy because I had written a post the day before in which I said that Kate almost always recognizes me as someone she knows and trusts. That wasn’t true yesterday. We were going to a play at 3:00, and I wanted us to have lunch without rushing, so I woke her about 10:30. I began by playing some soft music. Fifteen minutes later, I went in to see about getting her up. When I did, she looked at me strangely, and said, “Who are you?” I asked if she meant how we are related. She nodded yes. When I explained that I am her husband, she was surprised. Then I said, “You do recognize me as someone you know and are comfortable with, don’t you?” I expected her to answer yes, but she didn’t. Instead she said, “I don’t know.” Then I went in another direction. I said, “I am Richard Creighton, and I care about you very much. I’d like to take you to lunch. Would you like that?” She said, “Where are my clothes?” I said, “I’ve got them right here for you on the chair. Wouldn’t you like to take a shower before you dress?” She said, “Where is it?” I said, “It’s right over here. Let me show you.” Then I helped her out of bed and walked her to the shower. From that point on, everything went well. At lunch, she even used my name one time. Interestingly, I don’t recall her asking my name or hers the rest of the day.

One of the lessons I am learning is that explanations don’t seem to have the same power or effect that experience does. This is true for everyone she meets, not just for me. If I tell her we are going to have lunch with someone, she almost never knows who I am talking about. If I give her a little information about how we know them, that doesn’t seem to help. Once we are with them, it appears that she picks up more powerful clues. It’s her intuitive abilities that help more than her rational ones. I am sure that the longer we are with them, the more comfortable she feels. In an hour she picks up more information. This doesn’t mean that she remembers their names. It means she “senses” that they are people she knows and is comfortable with. The same thing seems to occur when she looks at photo albums. At first, she may not recognize some of the people. The longer she spends with the album, the better her recognition.

This discussion of recognition reminds me that she continues to have problems recognizing our house as “our” house. I noted above that she asked where the shower is. It is very common for her to ask where the bathroom is. She continues to want to follow me when we walk into the house, but not always. She also continues to confuse our house with a place we are staying while out of town. For example, after we got home from Nashville the other night, she asked if we were going to sleep here. I believe that is what she was thinking last night when she whispered my name and motioned to me to come over to her. When I got closer, she whispered, “Could you get me something to wear to bed?” I noticed that she had also closed our bedroom door. Earlier she had closed the door to the family room.

Something else that I noticed over the weekend is that she had some very talkative moments. One of those occurred Saturday night, after turning the lights out, she started talking about her mother and how much she helped other people. By itself that would not be unusual, but I was struck by some of her observations about people in general. She said that people have lots of different kinds of problems and generally don’t feel comfortable talking to others about them unless they are people they trust. She explained that her mother was that kind of person and could listen without being judgmental.

She was also talkative at lunch yesterday. Some of that involved teasing me. I said something about her birthday which is today. She asked how old she would be. When I  told her, she asked how old I am. I said, “I’m 78, but I could pass for 50.” (Joking, of course.) She laughed and said, “Have you looked in the mirror lately.”

Her appreciation of comedy has never included slapstick or farce. Yesterday we went to see Arsenic and Old Lace at one of our local community theaters. It’s a farce from beginning to end. She didn’t enjoy it. It seems like most of the local productions are musicals. She can appreciate them because of the music. I don’t think I will get tickets to another play. They demand too much of her. That’s not a great sacrifice. There are plenty of musicals.

Posted on

Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.

Posted on

Little Things and the Importance of Intuitive Abilities

Yesterday was another relaxed day and a very nice one. Even though we had no commitments for the day, I got Kate up before she was ready. Our housekeeper was at the house, and I also didn’t want to eat too late in the day. Fortunately, Kate didn’t make a fuss at all about getting up. She responded to me as though she recognized me. She didn’t ask my name or who I am. She gladly accepted my help with dressing although she did most of it by herself.

When we were ready for lunch and about to get in the car, she called to me in a whisper and motioned me to come close to her. It was like she was trying to keep someone from overhearing her although there was no one around. I walked to her, and she whispered in my ear, “What is my name?” I told her. She asked me to repeat it and then said it herself. As I opened the car door, she said, “What’s your name?” When I told her, she said, “I knew that.”

On the way to lunch, I played a CD of familiar show tunes. She sang along with several of them. I was surprised at her memory for the lyrics. She didn’t get them perfectly, but she did a pretty good job. She also surprised me as we left the restaurant. We were about to step off a curb when she said, “Take my hand.” I immediately sang the phrase “Take my hand; I’m a stranger . . .” She finished it by singing “in paradise.” I was surprised again. That’s an old song, and one that we haven’t heard in many years.

Later after we had returned home, she picked up something that belonged to our housekeeper thinking it was ours. I told her it was the housekeeper’s. She said, “My bad.” I don’t ever recall her using that expression before, and it is obviously of a more recent vintage than the old songs she was singing earlier. Once again she had surprised me.

I continue to believe Kate derives a good bit of pleasure from the puzzle pictures themselves as well as the satisfaction of completing them. She often asks me to look at a puzzle after she has finished it and comments about the colors or how cute the animals are. She has two or three that she works over and over. Both of them are pictures of kittens. One is very colorful. Kate like that. She likes the kitten in the other one. This happened several times while we were at Barnes & Noble yesterday afternoon. Her intuitive abilities are alive and well.

After dinner last night, I turned on the last of the Clemson/Notre Dame game and planned to watch the Alabama/Oklahoma game. As so often happens, my plans changed. Normally, Kate works her puzzles until time for her to go to bed. As I have mentioned before, she is encountering a little more frustration with her puzzles now. There have been a number of occasions in the past several weeks that she has simply put down her iPad and sat without doing anything. That is what happened last night. I saw that she had stopped working her puzzles and knew that she needed a break. I suggested that I find a YouTube video with some music. She liked the idea. I found a series of Andrea Bocelli videos that she enjoyed. That was followed by an old “Christmas in Vienna” concert with The Three Tenors. She watched all of it and was thoroughly entertained. That was an hour. It led to several additional videos of Bocelli with other musicians like Lang Lang and Sarah Brightman. Kate was so engaged that she didn’t want to go bed but did so at my urging.

So what about football? The truth is that I didn’t have a stake in either game, so I didn’t consider it a great sacrifice to give them up. In addition, I also enjoyed the music as well as watching Kate being so engaged. I hope that we will be able to enjoy music together for a long time. It’s a pleasure for me to live in the moment with her. It is also another example of how important intuitive abilities are to both of us. They provide moments of joy I did not expect when Kate was diagnosed.

Posted on

More Signs of Memory Loss and Confusion

For quite some time I have been reporting Kate’s difficulty remembering names and places as well as her confusion. That makes it a challenge for me to convey how she is different now than in the past. Perhaps the best way is for me to say that I don’t think she is on a plateau but gradually declining with respect to both her memory and confusion. There have been two occasions in the past few days that particularly struck me. One of those occurred yesterday morning.

Although it was not a day for the sitter, I wanted her to get up before noon so that she could get ready without my rushing her. I also wanted us to have a relaxed lunch before her 2:00 appointment for a massage. About 10:00, I put on some music to help wake her. It was 10:45 before I tried to get her up. She opened her eyes when I sat down on the bed. She smiled and waved to me with her hand. I asked about her getting up for lunch. She said she didn’t want to get out of bed that she was too comfortable and relaxed. I didn’t leave her bedside. We began a conversation that was one of those I take as a sign of a new stage of her decline. Let me try to capture some of flavor of our conversation.

KATE:            What’s your name?

RICHARD:    Richard.

KATE:             No, your full name.

RICHARD:    Richard Lee Creighton.

KATE:             Say it again.

RICHARD:    Richard Lee Creighton

KATE:             Let me say it. Richard. (unable to remember the rest) What’s your name again?

RICHARD:    Richard Lee Creighton.

KATE:            What’s my name?

RICHARD:    Kate Franklin Creighton

KATE:            That sounds right. What’s your name?

RICHARD:    Richard Lee Creighton.

KATE:            Say it again slowly.

RICHARD:   Richard Lee Creighton.

KATE:            What’s my mother’s name?

RICHARD:   Elizabeth Franklin. Does that sound familiar?

KATE:            No. Did you know her?

RICHARD:    Yes, and she was a very special lady.

KATE:            (Looking surprised) Is she gone?

RICHARD:   Yes, she died 13 years ago, but she lived a long life. She was 90 when she died.

KATE:            What’s your name?

RICHARD:   Richard Lee Creighton.

KATE:            What are you to me?

RICHARD:    I am your husband.

KATE:            (Surprised) You are? What was I thinking? (joking)

RICHARD:    Yes, and we have two children. Our daughter is 50.

KATE:            How old am I?

RICHARD:    You’re 77, but you will be 78 in less than a month.

We talked like this for 15-20 minutes before I said I would be glad to help her out of bed. She didn’t want to, but she let me get her up and take her to the bathroom. While she was showering, she asked my name, her name, and the nature of our relationship. As I noted before, she asked these things without any sign that she was disturbed. She just couldn’t remember them and wanted me to tell her.

We went to lunch at Panera. While we were there she asked some of these questions again as well as “Where are we?” By the time we finished eating, she quit asking all of the questions. I don’t know that is because she remembered or she was wrapped up in her puzzles. On the way home from her massage, she called me by name.

As in one other experience like this she tended to accept that I was her husband but my telling her did not bring back any memory of that. Neither did my name. Not only that but the duration of her confusion lasted longer than usual. More subjectively, it also seems that the way she looked and expressed herself seemed like it was much harder for her to make sense of everything.

We spent two hours at home before going to jazz night at Casa Bella. During that time she seemed quite normal. She didn’t ask any names. She did ask for help with her puzzles several times.

As always, she enjoyed the evening at Casa Bella. She was somewhat more talkative and confident. When we got there, we saw the couple that we went to Flat Rock with last week. We quickly got into two separate conversations. The husband and I talked while Kate talked with his wife. I wish I could have participated in both conversations because Kate was very animated and engaged. She continued to be talkative after we got to our regular table. It was a little noisier last night, and it was harder for her to understand what people were saying. As she has done in recent situations like this, she kept asking us to repeat what we were saying. I really feel for her at times like this. She was ready to participate, but she couldn’t follow what we were talking about.

On the way home, she asked where we were going. I told her we were going to our house. She was surprised and said, “How can we do that?” I told her we were already in Knoxville. That was another surprise for her. When I asked where she thought we were, she said she didn’t have any place in mind. She was pleased to be going home. In a few minutes, she asked where we were going to stay. Again, I told her we would stay in our own home.

When we drove down our driveway, she was puzzled. Then the garage door opened, she said, “Oh, I recognize this.” Once inside she followed me back to the bedroom. She started to close the door to the family room. I told her she could leave it open, that we were the only ones here. She said, “That’s a shame.” She was looking at our house as a hotel or some other form of lodging and not our home. She wished other people could be here to enjoy it. Apart from that confusion, she seemed very normal and showed no sign that she didn’t know me.

At 6:00 this morning she got up to go to the bathroom. I went around to her side of the bed to help her as I have been doing recently. I was surprised that she didn’t sound either groggy or confused. She didn’t want my help getting out of bed or walking her to the bathroom though I did walk with her. She said, “I really didn’t need you but thank you.”

After walking back to her side of the bed, she said, “I just want to look out here a minute.” She was looking at our back yard. She said, “It’s beautiful. They’ve thought about everything.” She still thought she was staying some other place than our home. Then she got in bed. The timing of her trip to the bathroom was just right this morning. It was about two hours later than yesterday. That suits me better. I had had a good night’s sleep.

Posted on

Sleep, Memory Issues, and Confusion

We had no special obligations yesterday, so I let Kate sleep a little later. When I checked on her about 10:30, she opened her eyes. I asked if she were ready to get up. She wasn’t. I got her up shortly after noon. She wanted to sleep longer but got up anyway without making a fuss. As she has done on a couple of other occasions recently, she got up, showered, and dressed reasonably quickly. It was still almost 2:00 when we left for lunch.

When she got up, she looked at me and asked, “Are you my daddy?” I told I was her husband. She was surprised. Then she asked my name. When I told her, she asked if I were her daddy again. This was like another occasion in the past few days. It wasn’t just that she couldn’t remember my name or that I am her husband. It was the fact that she asked so many times in succession. In addition, nothing seemed to jog her memory until we were well into our lunch.

She never seemed frustrated or disturbed, only puzzled that she and I were married. As we pulled out of the garage on the way to lunch, she asked again if I were her daddy. Again she was surprised when I said I was her husband. I commented on the fact that she seemed to be comfortable with me the way she would if she knew me. She acknowledged that she wasn’t afraid of me or bothered by me. She just didn’t know who I was.

When we arrived at the restaurant, I went around to her door and opened it. She said, “Richard” and pointed to her cup in the cup holder. She was asking if she should take it in. I told her to leave it in the car and then said, “You said my name.” She said, “What is it?”

It was no surprise that she pointed to the enlarged photo of Frank Sinatra on the wall of the restaurant and asked me who he is. She must have asked between five and ten times while we were there; however, she did remember that she has bad feelings about him. Before lunch was over she stopped asking my name, her name, and the names of our children. Part of the reason was that I felt as though I were pummeling her with information, and she needed a break. I think it was also a result of her having a longer experience in a restaurant that we frequent every Sunday. We talked with the hostess, our server, and another server we know. I think all of these things helped to bring back bits of her memory. A few minutes before we left the restaurant, she said, “You’re a good husband.” I said, “What makes you say that?” She said, “Somebody told me.”

We left the restaurant shortly after 3:30. In the car Kate asked if she could take a nap when we got home. I told her that would be fine but that I was surprised she was still sleepy since she had only been up less than four hours. When we walked in the house, she asked what she should do. I told her I thought she might like to brush her teeth and spend some time together in the family room. She went directly to a chair in the family room where I handed her the iPad. I went to brush my teeth. Before I finished brushing, she got into our bed for a nap. She was there until 5:30 when she told me she was hungry.

It’s not just names she is forgetting. I notice a number of other little things. For example, she asked me to tell her how to flush the toilet last night. For some time she hasn’t been flushing. I never thought about the fact that she might have forgotten how. Sometimes she doesn’t know where to put her cup when she gets in the car. She occasionally forgets where the seat belt is located though she remembers to put it on. A couple of nights ago after returning home from dinner, she walked out the back of the garage instead of coming into the house. When I explained that we were going in the house, she said, “How was I to know?”

As we returned home after dinner, Kate said, “It looks so different after dark. I’m glad I have a ‘witchie’ to drive me.” This is another instance of her getting mixed up with words. The words are sometimes unintelligible or unrecognizable. In this case she was trying to say “someone to drive me.” I said, “You wouldn’t know how to get home?” She answered, “I could get there. It was just take me a while.” This is one of those little signs of her retaining a sense of independence. It happens most frequently when she asks for my hand going up and down curbs or stairs. She frequently says, “I could do it myself. I just feel better holding your hand.”

These changes are coming about gradually but are frequent. Life is very different now than it was in the early years after her diagnosis.

Posted on

Miscellaneous Happenings Yesterday

Yesterday Kate got up after 12:00. I wasn’t troubled by this since we were going to Flat Rock, North Carolina for a Christmas show that started at 8:00. That is the latest event we have attended in almost two years. I knew she would need as much rest as possible. She had no trouble getting up. She seemed to recognize me and was in a good humor but not ready to engage in conversation. After her shower, she thought I was trying to rush her as she was getting dressed. I was actually trying to avoid rushing her, but I moved too quickly explaining the order of the apparel I had put out for her. She snapped at me. Then she apologized. I said, “That sounds more like the gal I know.” She said, “I was taught to be polite.”

In the car on the way to lunch she worked harder than I ever recall to learn my name. She repeatedly ask me my name almost the entire time we were in the car. She never seemed frustrated, just intent on getting it right. She finally said, “That’s enough. I’m not going to remember it right now, but I will later.” We went through the same thing with her name without the same degree of repetition. Once inside the restaurant she said, “I think we are a perfect match.” I told her I agreed. She didn’t ask my name again.

On the way to Flat Rock, I had the radio on to the news. She was attentive to what was said but couldn’t understand it. She kept wanting me to explain what they were saying. A number of times she said, “You’ll have to explain this to me later.” She does this a lot when she is getting overwhelmed by information. In the early years after her diagnosis she used to say, “TMI.” Now she has forgotten that acronym.

Once we arrived in Flat Rock, we spent about an hour in our hotel room and then went to dinner with our friends. She handled herself well although it was hard for her to hear and/or understand the conversation. She had to ask us to repeat what we were saying several times. She gets confused about items on the table. For example, at two of the restaurants we frequent the butter is in black wrappers. She always thinks they are chocolates. I have to watch or she starts to eat them. She’s only been successful one time and didn’t waste time spitting it out. The other times I have caught her before she puts one in her mouth. I usually remember to unwrap a couple of them put any remaining ones near me to minimize the chance of her making a mistake.

We didn’t have that problem last night, but there was something else. Three of us had either soup or salad before the meal. At the same time, the server brought a basket of small rolls and placed them near the center of the table in front of Kate. Thinking they were hers, she put the basket at her place and ate all of them along with the butter.

Keeping up with things like coats, sweaters, and gloves can be a challenge. I try to watch for these things, but I am far from perfect. Last night she wore gloves to the restaurant. As we started to leave, she could only find one. A quick search produced the missing glove under the table.

When we walked into the lobby of the theater, our friends wanted to buy CDs while we went to our seats. When they met us, Kate greeted them cordially as though we had not been together just a few minutes before.

When we were ready to leave the show, she had lost another glove. We checked with the box office and found that it had been turned in. I should also mention that she has difficulty putting on her gloves. She gets them on the wrong hands so that they are upside down.

As we walked to the car, she asked me where we were going. I told her we were going to the hotel. She was very confused. She thought we were going home. I explained that we were staying at a hotel and would go home tomorrow. She said, “How was I to know?” This is a common experience and is my fault. I know that she can’t remember anything for longer than a few seconds, but she behaves so normally most of the time I tend to forget. In this case, we had spent an hour in our hotel room before dinner. I didn’t think about the fact that she would have forgotten that we were staying in a hotel. There are also times when I assume she won’t understand when she does. It is difficult to recognize those times when she will know something and those times she won’t. I suspect I am not the only caregiver who makes mistakes like this.

Posted on

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.

Posted on

More Signs of Diminishing Memory

It seems like each day brings new changes in memory, sleep, and dependence. Yesterday fell into that pattern. About 7:30, I heard sounds coming from the back of the house. When I checked, I found that Kate had gotten up and was in the shower. I went back to the kitchen before returning another fifteen minutes later. She was in bed in the room where she keeps her clothes. I approached her and asked if she wanted to get up or rest a little longer. She wanted to rest. It was 10:00 when I checked again. This time when I asked about getting up, she said, “Where are my clothes?” I told her they were on the bed and handed them to her. She started to get dressed but wanted my help.

It wasn’t long before she asked who I am. When I said I was her husband, she said, “That can’t be. I wouldn’t have married you.” She didn’t say it in a nasty way, but she really couldn’t grasp that we were married. I could see that I wasn’t going to convince her and dropped the subject and focused on getting ready.

As we drove to Panera, she asked my name and her name. She asked again almost immediately after asking the first time. She also asked while we were at Panera and when we were at lunch. Mixed in with the questions about family names was a question about “where we are right now.” I don’t recall her asking so many times before. It is as though she is grasping to hold on to the names and places that mean so much to her.

When we got home after lunch, she wanted me to tell her what she could do. I suggested that she brush her teeth and then come back to the family room where she could work on her iPad. I told her I was also going to the Y and would set up the DVD of Les Misérables for her and Marilyn to watch if they wanted to. She said, “Can I just go with you.”

I started putting up the clothes I had washed and folded. This involved my moving from room to room. After Kate had brushed her teeth, she called to me several times saying, “Hey” or “Where are you?” Each time I answered she was confused when I told her the room I was in. She no longer knows where I am when I say “Our bedroom.” I’m not sure about the kitchen or family room. What I sensed most was that she wanted to be wherever I was.

Before Marilyn arrived, I told Kate that I was going to the Y. She said, “Don’t leave me.” I told her I wasn’t going to leave her alone, that Marilyn, the sitter, would be with her. She said, “Good.” When Marilyn arrived, I told her and Kate about the DVD I had put in the player and reminded them about going to Panera if they wanted. Kate said, “I think I’ll just go with you.” I told her I thought it would be better if she stayed with Marilyn. She accepted that without any hesitation, but she forgot before I got away and said, “Why can’t I go with you?” I explained. Again, she didn’t voice any objection.

When I got home, Marilyn told me they had watched all of Les Miserables and had been in the family room since it ended. When she left, I walked over to Kate and told her I was glad to see her and that I missed her when she wasn’t with me. She said she felt the same way about me. I kissed her, and she said, “What’s your name?” Then she said, “I didn’t have anything to do.” I told her I thought she had watched Les Miz. She said they hadn’t but she would like to see it. This is another good indication of her problem with short-term memory.

I went to our bedroom before we left for dinner when I heard Kate say, “Hello?” She was obviously looking for me. I reached her as she was coming out of the kitchen. She had a bewildered look on her face. Then when she saw me, she looked relieved. All of these things tell me she is experiencing more insecurity now and that being with me makes her feel more comfortable.