Living in Two Worlds: Ours and Her Own

I’m not really a writer; I just play one on TV (whoops, I mean this blog). What I mean is that I have neither the desire nor a special talent for writing. That would be especially true if I were writing fiction. Let me explain.

In this blog, I simply attempt to present an accurate account of what “Living with Alzheimer’s” is like for Kate and me. That doesn’t require any special creativity. It does demand that I pay attention to what is going on and write down my observations as quickly as I can. That has worked for a long time. While I wouldn’t say that every post does a particularly good job of that, I do think readers can get a pretty good idea of what life is like for us if they are regular or even periodic readers.

Recently, I find that so much is happening that I can’t remember everything and don’t have the time to make adequate notes during the day. That fact has made me appreciate the writers of fiction, especially those writing about the lives of caregivers and people with dementia. They always seem to have the necessary knowledge of dementia and the ability to write realistic portrayals of what it is like along with telling an interesting story.

For quite some time, I don’t believe I have given proper credit to the work of such writers because, after all, it is fiction. That couldn’t be as good as the “real thing” could it? However, I now feel that my own non-fiction account is somewhat compromised because of my failure to remember relevant events or conversations. There is simply too much coming my way to remember all of it. If I were a fiction writer, I could just create a situation that conveys the same message, but that has two problems for me.

First, is that it seems awkward to mix fiction and non-fiction. The reader might be confused about what is fiction and what is not. I don’t want that. Second, I don’t feel like I am sufficiently skilled to write a convincing fictional account of our lives. With that in mind, let me attempt to describe a significant change that is taking place.

From the beginning, Kate was quite normal. That’s how the story begins for all of us. In fact, she was so normal that she wasn’t concerned at all when she had her memory slips. Sometime later these slips became more common. I heard her say, “I think I have Alzheimer’s.” I gave her the typical, and truthful, response. “Everyone forgets once in a while. You’re all right.” We continued this exchange off and on for the next four years or so. She began to get lost when going somewhere in the car. We had several episodes in which I had to give her directions over the phone or drive to where she was so that she could follow me home. I began to recognize she was right. Finally, we talked with her doctor and went through the process of getting a diagnosis. It really was Alzheimer’s.

When we think of Alzheimer’s, or any other dementia, we tend to see an image of a person who is in the advanced stages of the disease. That is usually the “tip of the iceberg.” For much of the time, a person with dementia behaves quite normally. That is one of the good things I have learned since Kate’s diagnosis. That has enabled us to live rather full lives despite Alzheimer’s.

Now that she has reached the last stage (that can last years), we experience more dramatic changes. For the first time, I see what I have heard other caregivers talk about. It is a blending of what is normal and what is not, or, as I put it in the title, a blending of our world (yours and mine) and her own. She lives in both and shifts almost seamlessly between the two. Increasingly, she lives in both worlds at the same time.

Most often I have illustrated this blending with a story about Kate’s responding to me perfectly normally and then saying something like, “I love you. What is your name?” Now I see it in interactions like we had last night.

We had a good day though she wasn’t as talkative or cheerful. I don’t recall that she asked my name or hers the entire day. We came home from dinner, and everything was fine. I pulled up some YouTube songs from the musical Annie and then My Fair Lady. She enjoyed them. Then we started to get her ready for bed. We started with the bathroom. After brushing her teeth, she washed her face and arms. She rubbed them as though she were trying to get something off. That’s when she said, “Look. Can you see what I am doing?” I said, “Yes, you’re washing your face.” She gave me a look of irritation and said, “No, can’t you see that I am getting them.” (She frequently talks about things that are on her body. Often she gets one on her finger and shows it to me. I’ve never been able to see anything.) Having been through this before, I said, “Oh, yes, you’re doing a good job.” She said, “Well, it takes a while, but it’s worth it.”

From there we went back to the bedroom. Before getting into the bed she sat down and crossed one leg over the other so that she could work on her toes. This is one of her rituals in which she runs her fingers between her toes “to get them out.” She wanted me to watch. I was obedient. Then she wanted me to do it for her. I told her I had another way to do it. I got a hand towel and rubbed it several times between each toe. When I didn’t do it to her satisfaction, she told me I missed a spot and to do it over.

Then she got in bed and started pulling her hair. Again, she wanted me to watch. She said, “I want you to know what I am doing.” I knew what was coming next. She wanted me to do it for her. This time I told her I thought she did a good job and that I wouldn’t be able to do it as well. She accepted that. I should emphasize that during this entire time, she was talking normally as she always does. It was only what she said that was strange.

These days I never know how she will be from one moment to another. It keeps me on my toes in terms of how to respond to her. Fortunately, I’d say that more than 90% of the time when she is in her world, we are able to enjoy our time together. That’s a big plus for me. I know that isn’t true for all couples “Living with Alzheimer’s.” I do, however, believe that is a hopeful message for others traveling this same road. It is possible to live happily with this disease. Kate and I are not alone. I have read a number of accounts of other couples who have had similar success, but most have grimmer stories to tell. I wish everyone were as lucky as we have been.

Good News

My optimism paid off. When Kate finally got up, she appeared to recognize me. Last week, I received a shipment of new clothes I had ordered for Kate online. I selected something for her that looked very nice. That made me think about going to lunch at Andriana’s since we are planning to be in Nashville on Sunday. When I checked with our server to see if she was working at lunch, she wasn’t. I decided to try another restaurant that is nearby, Sunset Café. Like Andriana’s it is a cut above the average places we eat, and we don’t eat there often.

On the way, I played an album of Frankie Valli and the Four Seasons hits. Kate and I laughed about most of them. They are so dated now, but we still enjoyed them. We also had a good lunch. We are now back home where Kate is now resting on the sofa across from me. That is her customary pattern now. She has a hair appointment in thirty minutes. After that we’ll have another break before going to Casa Bella for opera night. That’s sure to be another hit. After a rough start, it looks like we will have yet another good day.

Welcome to Living With Alzheimer’s

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time. It includes the symptoms Kate has displayed as well as things we have done to cope with them. You will also learn about our frustrations and problems of which there have been many.

As of January 1, 2019, I had published 1318 journal entries to this site. In the days ahead, I will continue make new entries. I don’t have a regular schedule. I write them as new things occur. Sometimes I may not write anything for a day or so. Other days I may make two or three entries. In addition, I will continue to upload older posts that I have not yet read to see if they are suitable to be included on the site.

What may surprise you is how much we have been able to enjoy life and each other even as this disease takes a greater hold on us. We have been more fortunate than most couples who travel this road. On the other hand, if you are someone with dementia or if you are caring for someone with dementia, you will recognize many of the things we have in common.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

A Very Good Day: Mood Trumps Memory Loss and Confusion

If Kate were unhappy, frustrated, or disturbed, I could easily have been depressed yesterday. Instead, I am adding this to our long list of good days. It began in the morning and lasted until we turned out the lights for the night. Kate was in an especially good mood. I don’t mean to suggest that her primary Alzheimer’s symptoms were any less than usual. As I mentioned in my previous post, she was especially dependent and insecure at 4:30 a.m. What was different was her mood. She was happy and contented. This was reflected in the way she responded to me and the sitter.

After getting up in the early morning hours and again around 8:30, she slept until almost 11:00. That’s when I checked on her and found that she was awake but still in bed. I sat down beside her and told her I would like to take her to lunch. She smiled and said she would like that. Some mornings she lingers a good while before getting out of bed. This time she got up rather quickly, and we left for lunch about 11:45.

On the way to lunch she asked my name several times. When we got to the restaurant, she continued to ask my name and hers. Consistent with previous occasions, she did not seem frustrated over not being able to remember the names. The style of the conversation was just like an easy one between any husband and wife or two friends. Anyone who might have watched us from a nearby table would never have imagined that she was asking my name, trying to repeat it, failing to do so, and asking again. This was another of those occasions when she wanted me to tell her about her mother. She loved hearing me tell her what her mother was like and how her mother and father met. She was also curious about our children, and I filled her in on them. In our conversations she keeps returning to her parents, her family, and our children. There is no mistaking their importance to her even if she can’t remember their names or much else about them. I love being able to tell her about them. I never tire of it even though it is something I need to repeat over and over and over. This is a sign of adapting. During the early years after her diagnosis, I could not have imagined deriving any measure of satisfaction as her memory vanishes. The people who know this disease say that caregivers need to live in the world of the ones for whom they care. Fortunately for Kate and for me, I am able to do that. It didn’t come overnight. It has been a long slow progression.

On the way home, she asked me the nature of our relationship. I told her we were married. She was surprised. She wanted to know how long we had been married and if we had children. All of these questions were asked innocently as though we had never had the previous conversation while at lunch. As much as I see this, it always takes me aback when it happens.

When we walked in the house, she asked me if she could take a nap. I told her that was fine. She brushed her teeth and then proceeded to get in bed when the sitter arrived. Mary walked over to Kate and gave her a hug. Then she said something that really surprised and pleased me. She told Mary that she was glad to see her, that she wouldn’t want to stay at home by herself. I told Mary that I was about to put in a DVD for them to watch and asked if they had any preferences. They quickly agreed on Fiddler on the Roof. I set it up for them and started to leave. Then Kate said, “She’ll take care of me. Well, we’ll take care of each other.” I left feeling good.

When I returned, they were in the family room where Kate was looking through “The Big Sister” album that her brother Ken had made for her. Mary left, and I sat down with her and went through the album for another twenty minutes. I really enjoy seeing her go through the album. She gets so much pleasure from seeing pictures of herself, Ken and her family. I know this is exactly what Ken was hoping for when he made it. This is something else that provides joy for me as well. It is a very simple pleasure but a powerful one.

It wasn’t long before Kate was ready for dinner. We left for our Friday night pizza. When we got home, we relaxed in our bedroom. Kate worked on her iPad while I watched the evening news. Then I turned on a YouTube video of Messiah.

After we got to bed, I told her I loved her. She responded the way she has on several other nights. She laughed. When she does this it is because she thinks we are in the early stages of our relationship, and it seems too early for love. I said, “You love me, don’t you?” She said, “We’ll see.” I said, “I guess we could just go on living together.” In a serious tone she said, “Don’t ever say that again. I’m surprised you would say that at all.” This situation seems so incongruous. We were lying close together, and my arm was around her. A few minutes later she asked, “Where are we?” I told her we were in our bedroom in Knoxville.

Confusion in the Morning

Kate was getting dressed when I went to check on her at 10:30 this morning. She asked my name. I told her, and she said, “I knew that. I just couldn’t remember. What’s your name again?” I told her again. She said, “Oh, you’re a nice guy.” Then I said something about our being married. She said, “We’re married? How did that happen?”

She sat down in the family room to take her morning meds. I heard her call my name. (She still does pretty well recalling my name when she needs something. I suspect it is a conditioned response. It occurs without thinking.) She had noticed a TCU magazine on the table and asked if she could take it with us. A minute or two later, she had forgotten asking me. She asked, “Is this ours or theirs?” She may have been thinking we were in a hotel. I told her it was ours. She said, “So I can take it with us?”

As we were leaving for lunch, she decided to use the bathroom. She pointed to the door beside her and asked, “Is this a bathroom?” I confirmed her suspicion. It’s just another indication of how the house is becoming less familiar to her.

Acid Reflux?

I don’t know how I could have failed to say something about what may be a recurrence of acid reflux. This is an old problem for which we found a resolution two or three years ago. Since that time she has taken a prescription for Prilosec that had solved the problem. About six months ago, she experienced a couple of instances of the problem. I thought the problem had gone away on its own. Kate said she was eating more slowly which she believed helped to prevent a recurrence

I can’t recall exactly when, but she started using extra paper napkins at restaurants. This typically occurs before she has even eaten anything. As I reflect, it is something that occurs at various time during the day. She goes through lots of toilet paper which I now believe may be associated with this problem. Let me describe the problem as well as I can

Unlike her previous experience with acid reflux, what she is experiencing now does not involve exactly the same symptoms. When she has had the more serious experiences, she has to stop eating. She usually lowers her head slightly and appears to be trying to calm herself. With the current problem, she can continue to eat. As I have already mentioned, she will be having the experience before food arrives at our table

To me it appears that she is simply spitting up saliva. I do not see any visible signs that she is experiencing acid creeping up her esophagus. It is more like the normal salivation collects in her mouth, and she spits it out. I think one reason I haven’t mentioned it before was that it never seemed like something serious. In the past month or so, the problem has become more serious and seems to bother her. In fact, last night she had some difficulty getting to sleep because of it. I suspect it was more than an hour before she got to sleep after going to bed. She got up at one point. I heard her burping in the bathroom next to our bedroom. That led me to give her some Gaviscon. Before she was taking Prilosec, I gave her Gaviscon when she had a problem. It always seemed to work. I have tried it several times recently without the same success. I am not certain that it helps at all. I do know that she finally settled down and slept well during the night

About three weeks ago, I sent a message online to Dr. Reasoner, Kate’s doctor. She suggested that we try several things. She said we could take a second Prilosec in the evening. She also said if that didn’t work, we could try her taking an antihistamine. Finally, we recommended staying away from acidic foods and beverages. I tried doubling Prilosec and could not tell any difference at all. I dropped that. I then tried adding a Claritin with her morning medications. I have not been able to detect a change though I plan to continue to give it a fair chance of success. My reason is that I think her symptoms seem more like a post-nasal drip which sounds like an allergic reaction
One other symptom has made me think of the situation as more serious than I originally did. Within the past 4-6 weeks, I have noticed that she sometimes starts burping when she takes her pills. That made me think there might actually be a gastro-intestinal source of the problem. On the whole, however, I find it very confusing. What I know is that it has become a chronic condition that annoys her. It also concerns me that it might possibly be a symptom of something more serious. Unfortunately, Kate is unable to provide any kind of description. I am hoping that we might have a conversation with her doctor. I think her next appointment is in January or February

Kate does drink a lot of tea and Dr. Pepper. That would be the next step to try. That will be a hard one as these are long-standing habits.

Back Home

We got back in town and went directly to our favorite Mexican restaurant, Chalupas. It was quite a contrast to the meals we have eaten the past few days in Asheville, but it was just what we needed. I know I picked up a couple of pounds while we were away. I need to take some of them off
I brought our suitcases inside. I put mine in our bedroom and Kate’s in her office. I opened hers and took out a few things – her shoes and put them in her closet. I also took a pair of slacks and a couple of tops and put them in my closet so that I would know where they are. I’d like to take them to Texas with us.

In less 30 minutes, I noticed that Kate had moved her suitcase into the family room. Typically she puts it in the kitchen or laundry room when she has unpacked her things. I didn’t think much of it but picked up the suitcase to take it back to our storage room. When I lifted it, I couldn’t help noticing that it was heavier than I thought it should be. I opened it up to find that she hadn’t unpacked anything. She had simply moved the suitcase from the bedroom into the living room. This led me to take the suitcase back to her office where I unpacked everything and hung up her clothes. Then I took the suitcase to storage. She hasn’t said anything. Nor have I. I am sure that she wouldn’t remember anything about it, and it serves no purpose to inquire.

She continues to exhibit other misunderstandings or to have imagined things that didn’t happen. At dinner this evening, she commented on how spicy our dish was. I mentioned that to the server when he asked how we liked our food. Kate told him it was her own fault, that she had asked for it that way. Some time after he had gone, she told me she asked for it to be spicy, that he had not even asked. She just volunteered. Actually, she didn’t say word. I did all the ordering, and spiciness never came up.

On the way home, Kate said it was early. That led me to say we might take a look at what is on TV tonight. Then she said, “I think I will work on my new computer.” I said, “That would be nice.” For weeks now she has periodically mentioned something about a new computer. Each time I have told her she doesn’t have a new one but the same one she has had. This time I just accepted what she said.

Then when we got home, she said, “I think I will stay outside for a little while. I’ll change shoes though. I wouldn’t want to get these messed up.” It has been about 40 minutes, and she is still outside. I think she is still wearing the same shoes. I know she hasn’t been inside, but she might have changed to some yard shoes she keeps in the garage.

More Memory and Deja vu Issues

Nothing dramatic has occurred since my entry last night, but I did want to mention a couple of things. First, we were watching Breaking Away via Netflix when she got up to take her medicine. I turned off the movie while she was away. When she returned, I started it again in the place where we were when she left. In a few minutes when we had reached a place that was clearly beyond where I had stopped before, she said, “I remember this part.” I said, “From when?” She looked at me funny as though I had asked a dumb question and told me “right before I go my medicine.”

This afternoon we went to see a movie that had been produced and directed by a man who had grown up in Knoxville but now lives in New York. In part of the movie, it mentioned that he had grown up here and showed pictures of his house and neighborhood that looked very much like a neighborhood near us. After the film, I made reference to this and discovered that she had either forgotten that he was from Knoxville or simply missed it. We had even talked with someone who sat next to us who mentioned that the producer/director had spoken to his Kiwanis club this past Wednesday. He had talked about growing up here and how that related to his adjustment to being gay. Still she missed the fact that he was from Knoxville.

Tonight we went our for pizza. She walked up to the counter with me to pay. We spoke with the owner who was handling the cash register. He said something to her, and she said, “Oh, yes, you told me that last time.” This was her first time to talk with him. This is similar to what she says to me all the time. It comes up a lot when she asks a question that she has asked before; however, she also says it when she hasn’t asked the question before. I think it must be her way of covering for herself.

It is these kinds of experiences that make me think that she is missing much more of what is said in conversations, plays, movies, etc. than one would otherwise suspect.

Getting Tired

For the past week or so, Kate has been getting more tired than usual. In fact, she seems lethargic except when she is outside working in the yard. Fortunately, she has been doing that more recently as the weather is not as hot.

I probably would not make much of this except that it has been accompanied by less enthusiasm for doing things she would normally like to do. For example, yesterday was PEO day. She got ready without any difficulty, but she did not seem eager to go. She was very lethargic. In the car she closed her eyes as if she were going to sleep.

When I dropped her off, the past president of her chapter, walked over to the car and greeted me but not Kate. Then she turned around and walked up the drive and into the house without waiting for Kate. I felt sorry for Kate. This is the kind of thing that tends to happen when people know you have Alzheimer’s. I don’t think they mean anything by it. I think they believe that the person with Alzheimer’s just doesn’t notice or care. This is similar to the fact that people seem to look at me more when we are together in a social situation. I have to admit that some of this happens (I think) because Kate may communicate less than she used to do. It is harder for her to get into an extended conversation than in the past. I see signs that this is becoming more common.

Another sign of this lethargy occurred this afternoon. After we returned from lunch and a shopping trip, she said she was going to try and rest. Just before 4:30, she came into the kitchen. She seemed a little groggy as though she had just awakened. We hugged. Then she said she thought she would go out on the patio. I opened the door for her, and we both went out and sat for about 30 minutes. She indicated that she was hungry and would like to eat early. I made reservations for 5:30. She seemed tired on the way as well as when we sat down at the table. She was not talkative which is not unusual. When we left the restaurant, I commented on the fact that it was early (6:30) and said that we could watch the movie Breaking Away when we got home. She indicated that she would be ready for bed. We had not gotten very far in the movie when she started falling asleep. I turned the TV off.

Before we left for dinner, Camille called me to say that she would like to invite Kate to lunch sometime and wanted to know when would be a good time. I suggested this coming Monday. I told her to call back for Kate on the landline, and she could ask Kate but first we should establish the time so that I could make sure she is ready. We decided on noon. In a couple of minutes she called back, and I put Kate on the phone. She was thrilled that Camille had invited her. I will have to tell Camille how much this meant to her.

These kinds of things have made me think once again that Kate is going through another period of decline. First, it was the decline in short-term memory. Now it appears that she is losing the ability to focus on things which leaves her with little to do. This may be exacerbated by having to work so hard to follow things that she is withdrawing a little bit. At the same time, she is working so hard that she is worn out.

Knowing is better than not knowing.

Although Kate clearly wanted to know if she had Alzheimer’s, there have been times when each of us wondered which is better. I am now confident it is better to know. It has given us a higher quality of life together than we would have had otherwise. If we hadn’t found out, we would have continued on our merry way as we had been doing before knowing. This is strange because we both (especially Kate) felt for a long time that she had AD. But knowing took away the doubt and made us stop and take advantage of the good time we have together. In every respect, the days since diagnosis have been the best of our marriage. Even as I say this I know that the future will bring on the worst times. At least we will have made good use of our time since Jan. 21, 2011.