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

The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.

Awake Again and Confused

Having a video camera in our bedroom has helped me monitor Kate in the morning while I am in the kitchen. The only problem I have encountered is that I need to watch it constantly. Several times Kate has gotten out of bed while I was reading or working on my computer. One of those was this morning.

After my previous post, I returned to the kitchen since Kate was sleeping soundly. At 10:30, I decided to check on her. I saw the light was on in another bedroom. I walked in and found Kate. She had gotten up and was confused about where she was. She was wandering about. I asked if she wanted to go to the bathroom. She said she didn’t but wanted to lie down. I walked her back to our bedroom. She was shaking from fright. She held my hand all the way. As she got in bed, she asked, “Where are we?” I told her that we were in our home in Knoxville. That didn’t stick. She asked me several other times within a minute or two. I told her she seemed confused. She nodded. I asked if she knew that I am her husband. She said, “Yes.” She asked where we were again. Then she said, “What’s your name?” I said, “Richard Creighton. Do you remember that I’m your husband?” She said she did. She asked if she could rest. I told her she could and that I would get her up when it was time to go to lunch. I asked if she wanted me to stay with her. She said, “Please.”

It is now 11:05. I will let her sleep until 11:15. Then I will wake her for lunch. We are going to one of our local theaters for a 3:00 performance of Mamma Mia, so I can’t let her sleep much longer if I want to avoid rushing her.

Addendum to Previous Post

In yesterday’s post, I mentioned a variety of Kate’s behaviors that suggest to me that she is nearing the last stage of the 7-Stage model of the progression of Alzheimer’s. During the night and this morning, we had two other experiences that reinforce my conclusion.

At 3:30, she started to get out of bed. I asked if she wanted to go to the bathroom. She did, and I walked around the bed to assist her. She seemed amazingly alert. She didn’t want my help except to direct her to the bathroom. I asked if I could do something for her. She said, “I just want to get dressed.” I explained that it was early in the morning, and it would be better to go back to bed. She looked puzzled when I suggested that. It wasn’t until after she left the bathroom that I was able to convince her that she should go back to bed. She seemed wide awake and didn’t go back to sleep immediately. As we lay in bed, she said, “Do you do this for everybody?” I didn’t know what she was talking about but said, “Only for you.” She laughed. Then she said, “Who are you?” I said, “I am Richard Creighton, and I’m your husband.” She laughed again and said, “Oh, please.” Then she asked again, “Do you do this for everybody?” That was followed by my answer and her asking “Who are you?” again. This sequence of questions and answers must have been repeated three or four times. Then I told her I was going to sleep.

Shortly after 7:30, I noticed on the video cam that she was moving in bed and went to the bedroom to check on her. When I approached the bed, I said, “Good morning.” Her eyes were open. She looked at me, but she didn’t say anything. It was clear she was having a very different experience than the one that occurred at 3:30. I told her that it looked like something was bothering her and said I would like to help. She still didn’t say anything. I asked if she could tell me what she was concerned about. She didn’t answer. I said, “Is it something that is hard to explain?” She nodded that it was. I repeated that I would like to help her. Then I told her I had been eating breakfast and asked if she would like me to stay with her. She grabbed my hand and nodded. I told her I would get my breakfast and come back to stay with her.

It is now thirty minutes later, and she appears to be asleep. I’ll stay a little while longer and then go back to the kitchen. She can appear to be so different from one time she wakes up to the next. I can’t help wondering what she will be like when she gets up for the day.

She is definitely making more changes now. Another one that I neglected to mention in yesterday’s post is that she is having more trouble expressing herself and stumbles with the pronunciation of a greater number of words than in the past. She sometimes has trouble remembering and pronouncing simple words like “shoe” or “toes.” She often passes it off and says, “You know what I mean.” As you would expect, this is a concern for me. For the past four years, I have observed the effect that speech has had on our relationship with Kate’s friend, Ellen. She suffered a stroke and has never been able to speak so that we can understand everything she says. At one point, we could understand 60-70% of what she said. During our recent visit, that had dropped to 20-25%. The way Kate is beginning to stumble over her words is similar, though less serious, that our experience with Ellen. Difficulty with speech is another of the signs of the later stages of Alzheimer’s. Life continues to change for us and more rapidly now than in the past.

Taking Stock of Where We Are

I’ve read that one of the first questions most people ask after hearing their diagnosis is “How long do I have?” That was true for Kate. I think the best answer is “It’s hard to be sure.” Kate’s doctor said, “I’ve had patients who lived for another twelve years, but it can vary a lot.” I’ve heard the same figure other places and also 8-10 years.

I was among those who wanted to know “how long?” However, having learned that we had less time than I expected before her diagnosis, I found it more helpful to focus on the present. Kate and I wanted to make the most of that time. On a continuing basis, I have felt knowledge of the various stages of Alzheimer’s is useful.

There are at least two widely accepted models that identify the symptoms that are characteristic of each stage. One has three stages. The other has seven. If I use the 3-Stage model, I believe Kate is in the latter part of Stage 2. The Alzheimer’s Association says that is the longest stage and can last many years. That seems to fit with Kate’s experience.

I have paid more attention to the 7-Stage model. Perhaps that is because it seems somewhat more precise. I know that’s a bit strange to say in that both models describe general characteristics. Not everyone exhibits exactly the same symptoms. I would say that Kate has been in Stage 6 for more than a year. Her recent changes suggest that she is nearing Stage 7. Here is how WebMD describes the symptoms for these stages.

Stage 6: Severe Decline

As Alzheimer’s progresses, your loved one might recognize faces but forget names. He might also mistake a person for someone else, for instance, thinking his wife is his mother. Delusions might a set in, such as thinking he needs to go to work even though he no longer has a job.

You might need to help him go to the bathroom.

It might be hard to talk, but you can still connect with him through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.

Stage 7: Very Severe Decline

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period.

To get an idea of where Kate fits in these models, I think it is better to consider the kinds of behaviors that are now becoming commonplace. Here are a few things that have occurred in the past few days.

Confusion about Where She is

I don’t think she ever is quite sure of where she is with respect to the city of Knoxville. Increasingly, she doesn’t recognize that she is in her own house. She seems to ask where she is less frequently and assume that she is in Fort Worth. Leaving the restaurant the other night, she asked where her childhood home was located. I told her Fort Worth. She asked if I could drive by her house. I told her we would and planned to drive by one of our former houses in Knoxville. It turned out she forgot rather quickly. I just drove home. She never realized what happened. When we arrived home, we looked around the yard. Then I led her into the house. She asked if we were spending the night. I said yes. She wanted to know if I had everything we would need. I told her we did. She didn’t know it was our house. This is not a new experience. It is just more common now.

Having Milder, But More Frequent Moments of Anxiety

It’s been about ten months since Kate’s first attack of anxiety. It occurs when she seems to be aware that she doesn’t know where she is, who she is, or “what is going on.” Altogether she has had only five or six of them. Three occurred in the past week. One was yesterday morning.

She looked sad and/or slightly frightened when I woke her at 11:00. I asked if I could help her. She nodded. I asked her to tell me what was wrong. She didn’t say anything. She closed her eyes and looked so sad. I said, “I think I am your best friend. I would love for you to tell me what’s troubling you so that I can help.” She started to cry but didn’t. She didn’t say anything. I said, “I wonder if you might feel better if you got up and let me take you to lunch.” She nodded agreement. I proceeded to pull the covers back and help her out of bed. I walked her to the bathroom where she used the toilet and then brushed her teeth. Then we walked back to the bed where she sat down to get ready to dress. She said, “I am so glad you’re here.” I said, “You know that I will always be with you. We’re a team. We have been for almost 56 years. We always will be.” She said, “I know. We just clicked.” I said, “Yes, from our first date.” She again said, “I’m so glad I have you.” Then she said, “What is your name?” I told her, and she asked, “What is my name?”

When she had almost finished dressing, she said, “I’m feeling better now.” I said, “I think it was good for you to get up and dressed.” She said, “Yes, but I think it was also talking with you and knowing that you are always with me.” That was one of the many times that I was fighting back tears. We went on to have a nice day.

Recognizing Our Relationship

My guess is that she can’t remember my name or hers most of the time. About six months ago, I would have said she remembers that I am her husband about half the time. I would say that has dropped to 25% of the time. The good news is that she still responds to me as someone she “knows and trusts.”

Heightened Emotions

As she has lost almost all her rational abilities, her intuitive ones have become much more apparent. Her feelings for the beauty of nature, especially trees, are much more noticeable. I had someone refill the pots on our  patio and front porch with new flowering plants. She loves them. I did the same thing last year and hardly got a reaction.

She has stronger feelings about normal items in our environment and wants to take them with her when we go out. The other night she picked up one of the decorative pillows from our bed and took it to the car with us. When we got in the car, she asked what to do with it. I told her I would put it in the back seat. Last night, she wrapped her nightgown around her arm as though it were an injured arm. She was planning to take it to dinner with us.

There are numerous other examples of her emotional attachment and feelings about things. She has developed a ritual of looking at her ceramic cat and a photo of her father each time we are about to leave the house. On only a few occasions has she recognized him as her father.

She has been sensitive to sudden noises for a long time. Now she is frightened even by noises that are not loud. She is bothered by music in restaurants much more than in the past. It seems like almost anything can frighten her.

Music is even more important. She likes for us to sing together. Yesterday, we went to lunch at Applebee’s. It’s just a short drive from our house. I told her I was going to play some music she would like and turned on “Edelweiss.” It hadn’t finished when we arrived at the restaurant. As we walked to the entrance, I started singing it for her. She joined in. We didn’t get far before we stopped. The fellow serving as host opened the door for us. Once we had ordered, Kate wanted us to sing again. I hesitated for a moment. We were early, and there was no one seated around us. I started singing “Edelweiss.” She sang along, carefully following the words as I sang them. It was another touching moment.

She responds with sadness to the news or any other information that involves people who experience some kind of trauma. At Casa Bella this past Thursday, the woman sitting next to her told us about a fire that occurred in the restaurant years ago. Kate didn’t grasp that this was an old incident. She immediately took the woman’s hand with her own hands. She had such a sad look on her face. It looked like she was about to cry. I explained that this was something in the distant past. Then she was all right.

She also responds with a sad look and tears in her eyes when good things happen. Her response to her Mother’s Day cards is a good example. Another would be her response when I tell her I love her.

The heightened intuitive abilities have also been accompanied by changes in her aesthetic tastes. As we go through the laundry room to our garage, she often stops and looks at the items on the counter and admires the arrangement of things. Sometimes she moves some of them to other places she likes better. At restaurant, she sometimes uses her napkin as a place mat and carefully places her flatware on it.

Feeling More Dependence on Me

She asks me for directions on many things she would not have had to do before. For example, last night she asked me where to put her iPad after she had finished using it. Normally, she would just leave it wherever she was at the time. She has a greater sense of not knowing what is the right thing to do. She sometimes asks if she should take all the pills I put out for her. In restaurant, she sometimes asks me where to put her napkin. Over the past month or two, I have started cutting her meat for her. She likes that and has shown no effort to retain her independence.

At the same time I see her adapting well with the sitters, I also see signs of greater dependence. When we arrived home after lunch yesterday, the sitter was waiting for us. Kate said, “Who is that?” I said, “That’s Mary. This is my day to go to the Y. Mary is the one who will be staying with you while I am gone.” She looked disappointed and said, “How long will you be gone?” I said, “A couple of hours.” It’s nearly four hours that I am gone, but I know that she can’t tell how much time has passed. I think “a couple of hours” sounds better than “four.” When she heard that, she shrugged, and we got out of the car. Mary had gotten out of her car and greeted us. Kate responded like she was a longtime friend. Naturally, I felt good about that.

Once inside, Kate followed me to the bathroom where I was brushing my teeth. While she brushed her teeth, I went to the family room where Mary had taken a seat. Before I could say anything, Kate walked in and with a smile on her face said, “Richard said I could go with him.” I hated to tell her I was leaving, but that was the only thing to do. Fortunately, she accepted without protest though she looked disappointed.

There are two other things I should add. One is that she didn’t have as good a time at Casa Bella the other night. We were seated at a larger table with three other couples. That is just too much for her. At first, she seemed to try to be a part of the conversation. She ultimately sat back quietly. I hope that we will be at our regular table in the future.

The other thing is that she has seemed much more childlike in the past few weeks. That’s a little hard to describe, but it is evident in the way she expresses herself.

The rapidity with which the changes are occurring suggests to me that it won’t be much longer before she will be in the late stages regardless of whether I use the 3-Stage or the 7-Stage model. We have gotten along “remarkably well” during the earlier ones. I am hopeful that will be true as we go forward, but it is the stage everyone wishes would never come. I am no exception.

Making Plans

We face important decisions at every stage of our lives. It’s no surprise that seniors confront them as well. Some decisions are more significant than others. For example, when should I retire? What will I do after retirement? Sooner or later (we always hope the latter) we face things like giving up driving. That’s a big one. Few people want that. It’s a critical sign that we are giving up some of our independence.

An even bigger one is where we live as we age. It’s no secret that most of us want to continue living in our own homes. As our population ages, there is a growing effort to support seniors in their effort to accomplish just that. As with so many things, finances play a key role in such decisions. The combination of personal preference and finances accounts for the fact that most seniors do live in their own homes. At the same time, there are increasing options available for those who might feel the need to do otherwise.

I will turn 79 one month from today. That was the age of my parents when they talked with Kate and me about moving from West Palm Beach to Knoxville. We encouraged them, and they moved here in 1994. They lived in their own apartment. It worked out well for us and for them. I didn’t realize it at the time, but my mom was probably showing the early signs of dementia before then. Four years later, she was diagnosed here in Knoxville. I suspect their age and their health situations were strong motivators in their move. They loved South Florida and wouldn’t have wanted to leave otherwise.

At my age and with Kate’s Alzheimer’s, I find myself in a similar situation. For several years, I have thought about our options. Kate and I have lived in Knoxville for 48 years. We have invested our lives in this area. I find it difficult to think about moving away. On the other hand, Kate and I long ago agreed that we wanted to make life as easy for our children as possible with respect to their care for us. There is no way to relieve them of all responsibility, but there are ways to make it easier.

One of those would be to move closer to them. Right away that becomes a problem. Our daughter lives in Memphis, our son in Lubbock. If we move close to one, we are much farther from the other. Despite that, Kate has always wanted to go back to Texas, and our son is in the elder care business. He is a care manager who works with seniors and their children to meet the needs of both the parents and their children. He is familiar with all the senior resources that are available in the Lubbock area. If we were going anywhere, that sounds like a perfect option.

I’ve thought about this a long time and have mentioned it to both of our children, but I’ve never taken any steps to explore moving out of our current home. During the past six to eight months as Kate has declined, I have become increasingly concerned about what would happen to her if something unexpected happened to me. Could this be the same motivation that influenced my parents’ move?

For years, I have been reasonably familiar with Knoxville’s continuing care retirement communities (CCRCs) as well as the independent living, assisted living, and skilled nursing facilities (including memory care). I haven’t seriously considered any of them for Kate and me, but I have felt three of the CCRCs were possibilities for us should we ever have the desire or need.

Two or three months ago, I decided I should get more specific information about one of the CCRCs I believed was most suitable for us. Each week I meant to call but never got around to it. In the meantime, Kate’s condition has noticeably declined. Two weeks ago, I decided I needed to take action. I called for an appointment. Two days later, I spent almost three hours with the marketing director and one of his staff. They took me through all the details of their community and what it has to offer. Because I have visited several residents over the years, I was familiar with some things, but there were many things I didn’t know. One of those was about a new building that will be completed sometime during the first quarter of 2021. All but three of the apartments were pre-sold. Nothing was available among the existing buildings.

I took several days to think about it. Then I arranged another meeting with the intention of making a deposit on one of three apartments that were still on the market. I met with them again, got a little additional information, and wrote a check for the deposit. I have thirty days to make a final decision. If I decide to go ahead, I will have to put down a larger down payment. If I decide this is not for us, they will return the deposit. Until then, I plan to weigh all the benefits and potential downsides. My friend Mark Harrington once told me that when he is facing a choice like this he flips a coin to determine which way to go. Then he sleeps on it overnight before making a commitment. If he feels comfortable with the decision the next morning, he commits himself. If not, he looks to the other option. In a way, that is what I am doing with my decision. I’ll see how I feel at the end of thirty days.

Thoughts on Caregiving and Stress

One of the major topics among caregivers and the professionals who provide services to them and to their loved ones is caregiver “burnout.” Marty Schreiber, the author of My Two Elaines and a former governor of Wisconsin, is a very active speaker at many conferences and workshops across the country. He vividly presents his story of trying to “do it all” himself and the toll it took on him. He encourages caregivers to care for themselves and to recognize and seek help when it is needed.

I share his views and have worked hard to minimize my own stress. I watched my dad deteriorate as he cared for my mom. I am much like Dad, but I am not resistant to bringing in help.

At one time or another, almost all of my friends have asked how I am doing and if I am getting help. I appreciate their concern. I am concerned as well. I do, however, believe that I am doing quite well. That’s not to say I don’t experience stress. I do, and it’s increasing. The good news is I’ve been able to manage it pretty well. Let me explain.

My stress seems to come from two distinctly different sources. One is the sheer number of responsibilities I have. The other is a psychological one that relates to watching Kate lose one ability after another with the knowledge that it only gets worse. In this post, I will discuss the stress arising from my responsibilities as Kate’s caregiver.

The 36-Hour Day is, perhaps, the best-known resource for families who are caring for someone with dementia. As the title conveys, the responsibility for caring for a loved one with dementia requires more time than anyone has available. The responsibilities increase as our loved ones decline. If we try to do everything, something has to give, that is, some things will go undone. Often that means caregivers neglect to take care of themselves. Up to now, that has not been a major problem for me. There are several reasons.

One is that I have help. I engaged sitters for Kate a year and eight months ago. I have someone with her three afternoons a week, four hours each time. That enables me to get to my Rotary meetings, to the Y, run errands, and meet with friends. In addition, I have help with house cleaning and the yard. That means I can focus my attention on Kate.

I don’t participate in a support group, but I feel I get support in a variety of other ways. I have two longtime friends from college with whom I am in daily contact by email. One lives close enough to us that we are able to get together several times a year. We have other friends who are close enough for us to make daytrips to see them as well.

Regular readers of this blog know that we eat out for all meals but breakfast and attend live performances like the music nights at Casa Bella and local theater productions. They are both beneficial for Kate and for me. We are not socially isolated. We have church friends and staff that check in on us. I am on a steering committee at United Way and meet with them monthly. I meet for coffee with Mark Harrington every Friday after finishing at the Y. In addition, I stay in touch one or two other friends who are caregivers. I shouldn’t fail to mention this blog and my involvement with Twitter. All of these keep my mind occupied as well as having therapeutic value for me.

In addition, my responsibilities as a caregiver have not been as daunting as those of most others. Quite a few people our age are dealing with other health issues along with dementia. Apart from an occasional cold, neither Kate nor I has had any other health problems to deal with.

Some caregivers face a variety of problem behaviors from their loved ones. Although Kate has been more irritable than she was before Alzheimer’s, she is good-natured, loving, and most appreciative of what I do for her. It would be much harder for me to cope if she were not.

Finally, I believe my past experience with caregiving has helped me. I am now in my thirtieth consecutive year of caregiving. Most of that was with our four parents and my dad’s significant other. Some of that involved overlapping care of three at a time. Fortunately, we had fulltime professional care for both of Kate’s parents. Each of our parents’ situations was different and helped to sensitize me to a broad range of issues. I haven’t felt that I was caught off guard when Kate was diagnosed.

All of this is to say that I haven’t experienced the same degree of stress that faces so many caregivers. I am very fortunate. As I write this particular post, I should note that my stress is at its greatest level. I find myself slipping to take care of a wide range of obligations. Most of them are inconsequential. For example, I had purchased tickets for us to attend a local variety production of Broadway music at one of our local theaters this past Sunday. It is something we would have enjoyed, and we had no other obligations. I simply forgot to put it on my calendar, so we missed it. There are other things that relate to the maintenance of the house that get less attention than they deserve. I have plans to address them a little at a time over the next year. As Kate declines further, I will retain additional help and will likely participate in one or two support groups, but, for now, my stress is still at a manageable level. I am grateful for the concern and support I receive from those around me.

A Great Day

It seems like it’s been a while since I reported on having a great day. I’m really happy to report that we had one of those yesterday. It was a day of simple pleasures, but Kate was in a particularly good mood. She was happy and talkative. The only rough spot we had was when she got up. The first thing she said was “I want to get out of here.” I explained that we were at home and got her to look out the window to the back yard. She remembered it but said again that she wanted “to get out of here.”

Apart from that she got dressed, and she seemed to have forgotten about her eagerness to leave. In fact, she was ready to leave earlier than I wanted as the restaurant where we were having lunch doesn’t open until 11:30. I stalled a little bit. She waited happily until I was ready.

We had a 1:30 appointment at Starbucks with a representative of TCU. He was in town meeting with alumni. By chance, I noticed him at Carla’s where we had lunch. He was wearing a TCU lapel pin. Kate was excited to meet someone from TCU, and we spoke briefly while he waited to see another graduate.

We went home. It was during that time that she spent time with her Mother’s Day cards that I mentioned in my previous post. She closed her eyes for about ten minutes. I feared it might be difficult for her to get up when it was time to leave, but she got up quickly.

The day before I had sent the TCU rep an email letting him know about Kate’s Alzheimer’s. I didn’t want to depend on slipping him a card if she did or said something he might think strange. As it turned out, that was a good thing. As we talked, she forgot he was from TCU. Something came up about his job with the university. She was excited to learn (once again) that he worked there. He showed us pictures of his family and told us the names of his wife and three children. It wasn’t long after that when Kate asked his wife’s name again. That would probably gone unnoticed if she hadn’t asked his wife’s name three or four other times after that.

After I had ordered drinks for Kate and me, she whispered in my ear “How am I related to you?” I said, “I am your husband.” She said, “I was hoping you would say that.” During our meeting, she was very talkative and, for the most part, what she said was accurate. I believe it was knowing his connection to TCU that sparked her enthusiasm. We chatted for an hour, and I believe she talked at least as much as I did. I think she may have talked more. I deliberately held back a number of times to let her say what she had on her mind. I love seeing her when she is so enthusiastic.

She remained cheerful the balance of the day. She has seemed more childlike in the past few days. That was definitely so yesterday. That is sad as I know that is another sign of change. On the other hand, it is good to see her happy.

She commented on death a couple of times yesterday. One occurred as we walked from the car to the hair salon where she got a shampoo. I don’t remember what she said, but it started with “When I’m gone, I want you to . . .” I think I was so taken by the way she said it that I blanked on what she wanted me to do. During our meeting with the TCU rep, she said, “We all have to die. We might as well accept that.” It didn’t seem to fit in context with what we were talking about. I believe I may be overly sensitive about her recognition that something is wrong with her. When she talks about death, it makes me wonder if that is prompted by that recognition. Since she can’t remember things for very long, I doubt it. At the same time, her intuitive abilities are still sharp. Maybe she subconsciously senses she will go before me.

After dinner, we watched a YouTube video of a PROMS concert of music by Rodgers and Hammerstein. It was a good way to finish a very good day.

I hope today will be as good. She was up at 2:00 this morning and seemed rather clear-headed for that time of morning. She even called me by name a couple of times. As I walked her back to bed, she said, “Thank you. I really appreciate all that you do for me.” I said, “I do it because I love you. We’re a team. We always will be.” She agreed and said, “We’ll get through this.” That is something she says periodically. On several occasions, I have asked her what she meant. She said, “You know.” But I don’t. Could it mean her Alzheimer’s?

More on Mother’s Day Cards

After lunch yesterday, Kate and I relaxed at home for a short time before leaving for an appointment. She took a seat in the family room. I showed her the two Mother’s Day cards she had received from our daughter and her boys and asked if she would like to look at them. She said, “Of course!” She picked up the one from our daughter first and commented on the “beautiful” colors on the front. Then she opened it and read the message. I asked if she would like for me to read it for her. She declined at first but changed her mind when she stumbled on a few words. When I finished reading it to her, she did just what she had done yesterday. She was in tears and held it in her arms and clutched the card to her chest. She said, “I’m gonna take this with me.” I’m not sure where she thought we were going. She may have been thinking about a move to Texas. That still comes up once in a while.

After finishing that card, she read the one from her grandsons. She had the same reaction to it. It wasn’t long before she wanted to lie down on the sofa. She held both cards closely. She wanted to know if she could take them with her. I told her they were her cards and she could do whatever she wanted. She said, “They’re mine? They don’t belong to anyone else?” She read through the cards one more time while lying on the sofa. Then she put them under one arm and closed her eyes for a short nap. It was touching to see her experience so much pleasure.

Kate’s Emotions Bring Touching Moments

Kate received Mother’s Day cards from our daughter and her twin boys on Saturday. I put them on the island in the kitchen with the intention of giving them to her the next morning. When we came home from dinner, she saw them and asked what they were. I told her, and she wanted them. I gave the cards to her and helped her read them. Then she took them back to the bedroom where she looked at them again and put them on her bedside table.

That night she picked them up and sat down with them while I took a shower. She was still looking at them when I got out. She must have looked at them a full 30 minutes. She had a beautiful smile on her face.

After she was dressed and ready for lunch with the sitter yesterday, she picked up the cards and took them to the family room where she sat down and looked at them once again. Knowing that she has trouble reading, I asked if she would like me to read them for her. She did. As I read each one tears filled her eyes, she wanted me to read them again. Then she took the cards in her arms and held them tightly against her chest and said, “I’m going to keep these forever.” She paused and said, “And I’m going to tell my children not to ever throw them away.”

I’ve never seen her react so emotionally to cards. In fact, I have been surprised at how little interest she has had in them in the past. I think the explanation lies in the fact that she is at a new stage of the disease. It seems like she is moved even more now by all those things she experiences intuitively. That is true for music, for the beauty of nature, her interest in children, and to expressions of love and concern for her.

I can think of two other examples from yesterday. One involves a ceramic cat that sits on the floor one side of the fireplace. She passes it every time we leave the house. Yesterday, as usual, she stopped to look at the cat and commented on his eyes. She doesn’t confuse him with a real cat, but she loves him almost as much.

The other involved one of the paper doilies that she brings home from one of the restaurants we visit. She loves them. That was obvious when she held one in her hand and wanted to take it with us to dinner last night. It’s like her emotions are in overdrive. She is becoming more childlike. Her rational abilities are almost gone. Her intuitive ones sustain her. For me, each of these things brings a moment of sadness, but I am grateful and touched to see her enjoy such simple pleasures.

It Was a Good Day.

After her confusion first thing yesterday morning, Kate was fine when she got  two hours later. We had a nice Mother’s Day lunch at Andriana’s and returned home around 3:00. When we went to bed, I wondered if we might have another night of conversation. Fortunately, we both slept well.