Posted on

A Very Early and Unusual Start Yesterday

It seems like almost every day brings something new. It happened again yesterday morning. I got up to go the bathroom just before 4:30. When I got back into bed, Kate pointed toward the bathroom and said, “Is he still there?” I said, “No, he’s gone.” Then she started to get up. I thought she wanted to go to the bathroom. I asked if that was where she was going. She said, “No.” One of the interesting things was that she appeared to be wide awake. She showed no signs of grogginess the way she usually does when she wakes up. In this case, I don’t think she was really awake. I think she was sleep walking and talking in her sleep. The way she talked just didn’t sound the way she would normally talk. It was more like she and I had been in a conversation, and she was continuing it. I suppose it was more hallucination than anything else. Maybe she was having a dream.

Then she began to look for a light. She finally found the lamp on the table beside my bed and turned it on. I didn’t understand everything she was saying, but it seemed clear that she was planning to get up for the day. I told her it was 4:30 in the morning and that we ought to go back to sleep for a while. She turned off the light and went to the bathroom where she said she was going to brush her teeth. She took longer than I thought was necessary, and I got up to check on her. She had squeezed toothpaste into a plastic cup that she keeps on the counter and filled it with water. Then she started turning the mix with her tooth brush. I helped her get toothpaste on her brush and suggested we get to bed. Then she asked if someone was going to clean up the mess she had made. I told her to leave it and someone would take care of it. When she got up later, she seemed fine.

At lunch, I said something about our having lived in Raleigh after finishing graduate school at the University of Wisconsin. She asked, “What were we doing in Raleigh.” I told her that I was on the faculty at NC State. She said, “What did you teach?” It was telling that nothing rang a bell as I told her about our time there.

She was also a little confused at dinner. We ate at our regular Friday night pizza place. As we walked in, she said she liked their “Christmas lights.” There were no Christmas lights. In fact, I didn’t see anything that looked like lighting that she would have confused as Christmas lights. Fortunately, she didn’t turn that into a conversation. I don’t think I could have carried that off for very long. It wasn’t long before she said, “I think I’m going to miss this place.” I took that to mean Knoxville. It’s been a while since she has said much about our moving to Texas, but she has said several things lately that convey that is still on her mind.

When we got back home, she responded to our house as though it is not the house in which we are currently living. She wanted to brush her teeth and asked me where the bathroom is. I showed her. A little later, she specifically asked me who lived here. I told her it was our house and that we had lived here for 21 years. She found that puzzling. She didn’t remember it at all.

She was also very tired and got into bed a few minutes after 8:00. I hope that means she will get up early today. I’d rather not have to rush her. We are going to Nashville to visit her friend Ellen.

Posted on

Still Having Great Times

Earlier this week, I saw a tweet that staff at facilities often view all of their dementia patients as though they are in the late stages and treat them accordingly. I replied that I believe most people do the same thing when they learn that someone has dementia. We only think of the symptoms that occur in the late stages. I believe that is the reason many friends and family members take so long to recognize that someone has the disease. Although the pace at which Alzheimer’s progresses varies from person to person, there is often a long period of time during which the person with dementia is able to function quite well. Some experts say that the disease may begin as early as twenty years before getting a diagnosis. I’ll never know the starting point for Kate. I know that she thought she had Alzheimer’s at least five years before her diagnosis. That will be thirteen years ago in January.

During that period of time, Kate’s symptoms have gradually become more and more obvious to her and to me. They are less obvious to many other people we are around. I am grateful for that. It has allowed us to continue an active social life much longer than I would have expected. It’s not just that we are active. We still have very good times. That was true yesterday.

It was one of those days when she slept late. It took me over an hour to get her up. We didn’t get to lunch until nearly 1:00. Despite her wanting to stay in bed, she was in a cheerful mood. We didn’t do anything special until the evening. It was jazz night at Casa Bella. The music was beautiful, and the crowd was especially enthusiastic. Kate may have been more enthusiastic than most. The program always consists of many ballads and standards with which people our age are quite familiar. At one point, I looked across the table at Kate and noticed she was mouthing the words to many of the songs.

For the past year, another couple has joined our table for jazz night. Last night, Kate sat by the wife and I sat by her husband. During one of the breaks, I asked the man if he was aware of Kate’s Alzheimer’s. This is something I like for people to know because she sometimes says or does something that might seem a little unusual. He said he and his wife were aware. Then he added that if he didn’t know, he wouldn’t be able to tell. He felt she gets along quite well.

I thought she was especially alert yesterday. I had NPR on the radio and Kate asked, “What’s her name?” She was referring to the newscaster, but I wasn’t sure and said, “My name or hers?” She laughed and gave me a look that said, “Are you kidding?” and said, “You thought I forgot your name?” I didn’t say a word about how often she does ask.

There were other times during the day that she did ask my name. On the whole, however, she seemed to relate to me as her husband. Something else I have noticed makes me feel she comes in and out of those moments when she doesn’t know me. That is in bed at night. She often rolls over and puts her arm around me. There are also times that she wakes up when I get up to go to the bathroom. In those cases, she often moves closer to me and puts her arm around me when I get back in bed.

We are approaching seven years and ten months since her diagnosis, and thirteen years since the first signs. Kate’s symptoms are much greater now than at that time. She has declined significantly more in 2018 than in any other year. That has been especially true in the past six months. But we still have great times, and I am hopeful they will last a while longer.

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.

Posted on

A Conversation at Dinner Last Night

As Kate continues her recent decline, she is more cognizant of her deficits than I might have thought. I believe this is one reason she is expressing more attachment to me. She knows she needs and depends on me. At the same time, I am becoming more sensitive to the fact that I am slowly (and now not so slowly) losing her. Each of our responses to her changes were captured in a brief moment at dinner last night.

She had asked my name and where we were. Then she said, “I’m going to try to do better (remembering).” I said, “As we age, it’s just harder to remember things.” She looked at me and said very calmly, but seriously, “You know it’s more than that.” A moment later, she said, “I’m just glad I have you.” I said, “You know I will always be with you.” Then I added, “Till death do us part.” Then we both acknowledged our inability stop that ultimate separation.

I don’t know that she remembered that she has Alzheimer’s and didn’t pursue it. Her comment does reflect an awareness that her memory problem is not just a matter of getting old. It reminds me of how she felt as far back as 2006 when she believed she had Alzheimer’s. She knew then and she knows now that her problem is serious. It’s not something that everyone experiences.

My response to her also reflects my deeper feelings about losing her. I don’t want to let her go, but that is something I can’t control. I do want her to be secure in knowing that I really will be here for her “till death do us part.”

Posted on

A Full Day Yesterday

Despite Kate’s getting up unusually early yesterday, she didn’t nap at all. Part of the reason was that, except for two hours, we were gone all day. I had fully expected her to want to return home from Panera for a nap before lunch, but we stayed there until meeting our pastor for lunch at another restaurant. We had a very good visit with him and took a longer-than-usual lunch. Kate handled herself beautifully. She had been the volunteer church librarian for 19 years. Our pastor commented about the contribution she had made in that role. It didn’t take any encouragement for Kate to speak up about the library and how she managed it. I love seeing her get opportunities like this. On so many other occasions, she finds herself in conversations in which she is unable to contribute much.

We had just enough time to freshen up before Kate’s bi-weekly massage. Kate was in the waiting area of the spa when I picked her up. I said, “Did you enjoy it?” She said, “What?” I said, “Your massage.” She said, “I didn’t have a massage.” That’s a striking example of how short “short-term memory” can be.

After that, we came home for two hours before going to dinner. During that time, we relaxed in the family room, she on her iPad and I on my laptop with music playing all the time, of course. It was a very pleasant time. We followed that by going to dinner at Bonefish Grill.

Near the end of our meal, Kate wanted to use the restroom. It was located in a direct line from our booth to the back of the restaurant, but I walked her there to avoid any confusion. Then I went back to our booth and sat on her side of the table so that I could watch for her when she came out. I wasn’t surprised when she walked out of the restroom and took an immediate left instead of walking straight to our seats. When I caught up to her, she was entering the section where the bar is located. I called to her, and she turned around. She looked very relieved. When we got back to our seats, she thanked me for getting her. Then she said, “I didn’t panic at all.” Moments later she confessed that she was worried and thought I might not be able to find her.

On the way home, Kate said, “If someone were to ask where we live, what would you say?” I told her. Then she said, “Who are my parents?” That prompted me to tell her not only their names, but that her Dad was from Fort Worth and her mother from Battle Creek. Then she asked how they got together. As I told her about their meeting in Michigan, falling in love, their marriage, and her mother’s moving to Texas, she was excited just as though this were the first time she had every heard the story. For her, of course, it really was like the first time. She showed no recognition at all of her mother’s being from Michigan or anything else I told her.

I wasn’t surprised that Kate wanted to get ready for bed soon after we got home. First she brushed her teeth in the guest bath next to our bedroom. When she came out she didn’t know where to go. I heard her say, “Hey” and went to her. I brought her to our bedroom. A few minutes later she left to get something. She got lost again. Again, I heard her say “Hey.” This time she had made her way to the kitchen. It’s just another example of how even the things she has held on to the longest are drifting away.

Posted on

Early Start Today

Last night, Kate was tired and had trouble working on her iPad when we returned from dinner. I’m not sure her problem with her puzzles relates only to being tired. She seems to experience increasing difficulty remembering how to open her puzzle program or how to get a new puzzle once it is open. As I have mentioned before, she is also asking for my help when she has only one or two pieces left. It should be pretty easy to see where the pieces go with a 16-piece puzzle, but it is not easy for her. It is not unusual for her to ask me to finish the puzzle for her. She finally gave up trying and got in bed around 8:00. When I joined her closer to 10:00, she was awake. I got the impression she had been awake the whole time.

Around 5:30 this morning, she must have had a dream. She moved close to me and put her arm around me and held tightly. She did not appear to be awake. Neither she nor I said a word. I put my arm around her. She was very tense. As I held her, she relaxed. Since we didn’t speak, I don’t know if Kate remembered my name. The way she reached for me made it clear that she recognized me as someone she knows. I take it as another sign that she looks to me for security.

About 8:30, I checked on her. I expected her to be sleeping soundly. To my surprise, she was getting dressed. I helped her briefly, and she was ready to leave for Panera and her muffin shortly after 9:00. It’s a little like old times. As we walked in, we spoke with a couple we have seen most frequently on our visits. The man and I have connected, and each of us has missed seeing each other.  We arrived before a Bible study group from a nearby Baptist church. That gave us a moment to speak with one of their group whom we have known through musical circles in town. We also said hello to a young woman seated at the table next to ours. She is a medical student who often spends time at Panera studying. Kate went over to her, and they spoke for a few minutes. Since she didn’t get as much sleep as usual, I suspect Kate will be ready to go back home and rest a bit before we go to lunch, but we’re off to a good start.

Posted on

From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

Posted on

More Confusion This Morning

For the second day in a row, Kate has not known my name or that I am her husband. I checked on her around 9:30 to see if she were awake. She looked up at me as I walked into the room. She didn’t say anything. I told her it looked like she had had a good night’s sleep. Then I asked if she wanted to get up or continue to rest. She didn’t hesitate in choosing to stay in bed. Shortly after 10:00, I went back to her bed. I wanted her to get up so that I could get her to lunch before the sitter arrived. I told her I would like to take her to lunch. She was agreeable and slowly got up out of bed with a little boost from me. She is beginning to want my assistance when she gets out of bed, the car, or some chairs.

She said she wanted to go to the bathroom and asked where it is. I pointed in the direction on the other side of the bed and said, “It’s right over there.” She didn’t understand. I told her I would show her the way. Once she was in the bathroom, I left her and went to the kitchen. About fifteen minutes later, I returned and saw that she was sitting in a chair beside our bed. She hadn’t dressed and said, “Are you the doctor?” I can’t be sure what prompted her question, but the fact that she was undressed and might not have known me might have had something to do with it. I told her I wasn’t a doctor, that I was her husband. She gave me a look of disbelief and said, “What’s your name?” I told her. Then she asked her name.

I asked her if it was hard to believe that I was her husband. She said it was. I said, “It seems like you trust me.” She said, “Why do you say that?” I said, “Well, you’re sitting there without your clothes on and you don’t seem concerned at all.” She said, “I guess you’re right. You’re a nice guy.” I didn’t pursue it further but helped her with her clothes, most of which she took care of herself.

The subject of who I am came up again in the car on the way to Panera. She still found it hard to believe I am her husband. She asked my name again. I mentioned that we have children. She was surprised and asked who they are. When I told her their names, she said that she liked those names.

Before taking our seats at a table, she asked if I would mind getting her drink. That is one of only a few times she has asked for my help with the drink machine. Sometimes I volunteer to do it for her when we have to take a seat that is not close to the machine. She didn’t say anything more about me or the children. She was occupied with her puzzles.

Since we were running late, I called the sitter and asked her to meet us at Panera. When Marilyn arrived, Kate was very cordial as she usually is. When I told her I was going to Rotary and the Y, she said, “What am I going to do?” I told her that she and Marilyn could stay at Panera for a while and then go home anytime they wanted. She asked if Marilyn knew how to get there. I told her she did and left for Rotary. It was one of those times that I felt all right leaving her.

Posted on

Recovering from Morning Confusion and Thinking about Life and Death

After her confusion yesterday morning, Kate remained in bed another hour before getting up. I didn’t see any sign of the confusion I witnessed earlier. In fact, I don’t recall her asking my name or hers the rest of the day. When she was dressed, we went directly to lunch. At lunch, she said something about our being friends. I told her we are very good friends. Then she said, “I thought that we were married.” She had obviously recovered from her confusion.

That is a good illustration of the fact that most changes occur a little bit at a time. She started with occasional slips on the names of acquaintances, then grandchildren’s names. Gradually, they became more frequent. Then it was our children’s names. Now it is mine and her own. Memory comes and goes, and will ultimately disappear completely. She is gradually forgetting that I am her husband. I am hopeful that for a good while she will hold on to her feelings that I am not a stranger but someone she will continue to love and trust.

As we took our table at lunch, I saw a former client and his wife at a nearby table. Kate and I went over to speak to them. When we shook hands, he said, “How are you doing?” The way he asked it sounded as though he knew about Kate’s Alzheimer’s. I gave him my usual response that we are “doing remarkably well.” As we turned to his wife, he said that her cancer had returned. I asked about treatment. She said that she had already had surgery as well as chemotherapy and radiation and decided not to pursue anything further. I suddenly felt a kinship with them that I hadn’t felt before. Her husband said they were taking it a day at a time and enjoying themselves. I told him that is exactly what Kate and I are doing.

Yesterday afternoon, we attended a memorial service for a church friend. Her husband is one of several men I contacted a few years ago to explore interest in getting together periodically. He was the only one who declined. I regretted that because I got the impression from our initial conversation that their situation and ours were very similar. We encountered them occasionally at two of the restaurants we frequent. Today’s service confirmed my belief that we shared a number of things in common. He and his wife were extremely close, and they had been able to enjoy life as we have done. I also recall that her decline had been very gradual like Kate’s. Their son spoke at the service and talked about his mother’s Alzheimer’s. Like us, they did not have to face any challenges of other health issues or personality changes. Although the son mentioned the changes brought on by Alzheimer’s, it was a very upbeat account of his mother’s life and what she had meant to her family.

I hesitated going to the service because I didn’t want Kate to be bothered by anything that might be said. I was thinking of passing references to Alzheimer’s. If I had known how much the son was going to say about his mother’s symptoms, I would not have gone. Fortunately, I don’t think Kate picked up on any of it. After the service, she didn’t say a word about the service or anything that was said. She was just the way she would have been had there not been any mention of Alzheimer’s.

In the last three years, two of the spouses and one of the caregivers with whom I had been in contact died. A week ago, I attended a joint memorial service for a husband and wife, both with Alzheimer’s, who passed away within 6 days of each other.

The passing of these friends and the recurrence of cancer for my client’s wife causes me to think about more about Kate and how long she will be with me. In yesterday’s service, the son mentioned that his mother’s decline had been very gradual until the last few months. I hope that will be the case for Kate. I know she would not want to linger for years. That’s a hard thing for a spouse or other family caregiver to say. When I have heard other caregivers express this sentiment, I have recoiled. Now, I am beginning to understand.

Posted on

A Confusing Start

It is a few minutes after 9:00. Ten minutes ago, I heard Kate cough and went to check on her. I poked my head in the room and saw that she was awake but still in bed. I walked over to her, kissed her on her forehead and said, “Good morning.” She gave me a puzzled look and we had the following brief conversation.

KATE:            “Who are you?”

RICHARD:    “I’m Richard Creighton, and I am your husband.”

KATE:            “Who am I?”

RICHARD:    “You are Kate Creighton.”

KATE:            “I don’t know who I am?”

RICHARD:    “I can help you with that. You are the daughter of Elizabeth and Charles Franklin who loved you very much. You were very special to your daddy.”

KATE:            “What are their names?”

RICHARD:    “Elizabeth and Charles Franklin.”

KATE:            “Who are you?”

RICHARD:    “Richard Creighton, your husband. Does that surprise you?”

KATE:            “Right now, I just feel like I’m crazy.”

RICHARD:    “You’re not crazy.”

KATE:            “I hope not. It sure feels like it.”

RICHARD:    “I think you’re just a little bit groggy. Would you like to get up or rest a little more?”

KATE:            “Rest.”

RICHARD:    “I want you to know that I am here to help you if you need anything. Would you like me to stay here in the room with you?”

KATE:            “What do you want?”

RICHARD:    “I was going to the family room.”

KATE:            “That would be all right.”

RICHARD:    “Call me if you need me.”

KATE:            “What’s your name?”

RICHARD:    “Richard Creighton. You could just say ‘Hey” if that would be easier.

KATE:            “Oh, good.”