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 June 3, 2018, I had made 1319 journal entries, 983 of which have been uploaded 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

There ARE humorous moments.

In the car on the way to lunch today, Kate said, “What city is this?” I said, “Knoxville, Tennessee.” A couple of minutes later, she asked again. I said, “Knoxville, Tennessee, where we have lived for 47 years.” She was surprised as she always is when I tell her this. She said, “I guess that means I’m old.” Though I am only six months older than she, I said, “Think about me. I’m 78.” With a smile on her face she quickly responded, “Well, you’re ancient.” She still has her sense of humor.

While we were at lunch, she asked me at least three more times where we were. One of those times was immediately after I had told her. A similar thing happened on the way home after lunch. She asked me to tell her my full name. Right after I said it, she said, “Say it again.” I did and then asked her to say it. She got the first name but was stumped on my middle and last names. She didn’t express any frustration. She just laughed. I laughed with her. Of course, it’s really sad, but it feels good to laugh, especially when she initiates it.

A Mother’s Love

I got in bed last night about thirty minutes after Kate. That’s rather typical. Sometimes it’s a little longer. She was still awake and said that she had been waiting for me, wondering what I was doing. I had been reading in my chair right beside the bed. Until the past few months, I had been going in the family room and reading so as not to disturb her. When I discovered that left her feeling alone, I started reading in the bedroom. Since I read from my iPad, I have no trouble reading in the semi-dark room. Even though I am nearby, I find that she feels better when I finally get in bed with her.

After snuggling up close to her, she said in a very childlike way, “Tell me about our children.” I did. We talked a few minutes more and she again said, “Tell me about our children.” It was like a child who wants her mother to tell her favorite story once again. Over the past 4-6 months, I’ve grown accustomed to her asking me to tell her our children’s names or sometimes asking “Do we have children?” This was the first time, however, that she has asked in this way, and it opened my eyes to a reinterpretation of her asking.

She asks me other people’s names continuously throughout the day. That almost always occurs when I have said something like “Today we are going to see the Robinsons.” Her typical response would be “What are their names?” When she asks our children’s names, it isn’t usually prompted by anything I’ve said. For example, we may be driving in the car, not even talking, when she says, “What are our children’s names?”

At first, I interpreted her questions as a simple request for information. I also wondered why she seemed to ask about our children’s names as much or more than other people’s names. She should have been able to remember them much longer than those of others.

Last night when she said, “Tell me about our children,” I don’t think it was because she is simply forgetting their names like those of everybody else. It’s precisely the opposite. Her many unprompted requests for their names is because they do matter so much to her. She loves them dearly. They are precious to her, but their names are slowly slipping away. It’s her “mother’s love” for her children that is prompting her questions.

In addition to forgetting their names, I am sure she is forgetting most of the things about them. She hasn’t forgotten her feelings for them, however. She is doing her best to hold on to the last memories she has of them. I intend to do my best to help her.

Update on Sitter

Last Monday, Kate didn’t seem eager for her sitter. When I got home, Anita told me that Kate had been very quiet and not herself. Since I knew she was fine during the morning, I was concerned that we might have a problem with the relationship between Kate and Anita.

Kate got up late this morning. I had to wake her in order to get her lunch before leaving for my Rotary meeting. As I have done at least once before, I gave her the option of staying in bed and having Anita take her to lunch or going with me. She wanted to go with me and got up quickly. She met me I the kitchen when she was ready and asked how I was doing this morning. I said, “Just fine now that you are here. I love you.” Using her hand signals, she conveyed that she felt the same way about me. As I backed out of the garage, she said, “Tell me your name.”

We were running late, so I asked Anita to meet us at Panera. When I saw her walk in the front door, I told Kate that Anita had arrived and that I would be leaving for Rotary. She gave me a concerned look and said something that I interpreted to mean that she didn’t see a need to have someone stay with her. Then Anita walked up to the table, and Kate greeted her warmly.

When I returned home, everything seemed fine. They were both in the family room. Anita had the TV on. Kate was on her iPad. I walked Anita to the car and asked how things had gone. She said Kate was fine today. When I walked back inside, I asked Kate the same question. She also thought things were fine.
I did point out a photo album that Kate’s brother Ken had made for her. Anita said she had not seen it. I suggested that next Monday she have Kate show it to her. I felt better today than I did last week but will continue to be sensitive to any potential issues that arise.

As usual, Kate was ready to leave the house after I came home. Before leaving, she asked, “Where are we?” I told her we were at our home in Knoxville. She went to the bathroom. She asked the same question again. She asked again before we got in the car. She asked another three or four times before we got to Panera where I got her a bagel.

She was very tired at dinner and immediately got in the bed and under the covers when we got home. I let her rest for almost an hour. Then I suggested that she might get up so that she would be able to get to bed at her usual time tonight. She got up quickly and is now working on her iPad.

Update on Salivation Issue

Two years ago this fall I heard Kate burping when she took her medicine. It wasn’t something she did all the time, just periodically. I’ve heard it even in the past few days. It hasn’t been a big issue, but a short time after it started, I noticed that she was wiping saliva from her lips. She used almost anything she could put her hands on. In restaurants, that was mostly napkins. In those restaurants with paper napkins, she would have used her original napkin as well as the small napkins under our drinks before the meal arrived. We regularly ask for more napkins. That was how she began bringing them home and depositing them in a basket in our garage. At home, she used toilet paper and lots of it.

I spoke with her doctor about it. I told her that it did not appear that she was having a reflux problem. It seemed like she was just not swallowing her saliva. When I talked with Kate about it, she found it repulsive to swallow. I was able to get her to try it, but she would never continue.

Despite my sense that it wasn’t a reflux issue, we began to think about the burping. The doctor thought it might suggest reflux after all. She had been on a reflux medication for a couple of years or so. The doctor recommended several ways we might address it. We started by increasing her reflux medication. Then we tried an antihistamine. After that we tried another medication that is supposed to reduce salivation. Nothing worked.

A few months later, her doctor accepted a medical director’s position in a clinic offering free medical care to those who need it. Kate’s new doctor prescribed another medication that reduces salivation. That didn’t work. Finally, we went to a gastroenterologist. He couldn’t find any physical reason for her problem. He did, however, say that as we age we seem to accumulate a little saliva in our throats. He thought that might be causing her not to swallow. We decided to live with the problem. Later, her dentist told me she had observed this among a lot of her older patients.

My update today is to say that the problem continues. She still goes through lots of napkins and paper towels. I keep a supply of both in my car. If we have any extra paper napkins at a restaurant, I am quick to take them to the car for when we need them. I often keep a couple of sheets of paper towels in my pocket. When she doesn’t have a paper product, she often uses her hand. Then she wipes the saliva on her clothes.

I know that she does swallow sometimes. One day at Barnes & Noble, I watched her for a while. During that time, she never wiped away any saliva. As recently as the past week, I also noticed a short time when she was swallowing; however, those are infrequent occurrences. I would like to think this is a problem that will just go away, but it doesn’t look like it.

Feeling Grateful on Father’s Day

When we get to a certain age (not sure when that is, but I must be there), we begin to reflect a bit on our lives, people we’ve met, things we’ve done, places we’ve been. That takes us to how we feel about ourselves. When I do that, I always think of one word that sums it up for me – Grateful. Yes, I am grateful for many things.

I’m grateful to be alive. When I was twelve and some time thereafter, I thought 60 was very old. I knew that I would never live that long. That bothered me because I wanted to live to see the turn of the century. When I was older, I no longer worried that I wouldn’t make it. I was still here. When my dad celebrated his 100th birthday in 2013, my optimism about my longevity took a leap forward. Now it’s 2018, and I don’t believe I am likely to depart this world anytime soon. I am very mindful, however, that life is uncertain. Kate’s diagnosis with Alzheimer’s in 2011 keeps that in the forefront of my mind, but I am very grateful to be here today and enjoying life.

Since it is Father’s Day, I also feel grateful for my dad. Although I never remember his giving me any advice or admonition about making the most of life, he was a significant role model for me. He had a much harder life as a child than I did yet he never complained. He was always optimistic. I could tell by observing how he dealt with problems that he saw life as involving recurring challenges. His job was to figure out how to conquer them. He loved life and the people he encountered along the way. They loved him back.

Kate and I are both grateful for our families. That includes our extended and immediate families. We have two children who have successfully found their places in the world and are raising children that we expect to do the same. Kate and I want to minimize their responsibilities in caring for us, but I know there will be plenty near and at the end of our lives. I am especially grateful for our daughter’s and son’s skills and sensitivities about the aging process. We will be in good hands.

I am grateful for the opportunities I’ve had to experience the world. That began with educational opportunities but extended to life experiences in different places with different people. I never imagined what lay ahead of me when I left for college. Those experiences have had a tremendous impact on my view of the world.

Many people have influenced my life. Of course, that would include teachers, but goes much further to include people I have studied with, worked with, played with and encountered in brief encounters in everyday life as well as international travel.

As I think of people who have been important to me, I naturally think first of my partner in life, Kate. We’ve often talked about how unlikely it was that a beach boy from Florida would meet up with a Texas gal almost 1500 miles away. We came from very different kinds of families and backgrounds. It turns out that we have shared values and interests that have lasted us a lifetime. My dad couldn’t understand why I wanted to go so far away from home when there were plenty of good colleges and universities in Florida. I loved my family, but I am glad I left for a new adventure. My mom said, “You’ll go out there and meet a Texas girl and never come home again.” She and I were both right. It worked out well.

Kate’s diagnosis with Alzheimer’s wasn’t in our game plan, but we quickly decided we would make the most of our time. I am satisfied that we have done that, and we’re not finished. Even as her memory fades, we are enjoying life and each other. She lives in the moment, and I am living with her. That is what I am most grateful for this Father’s Day.

Meeting our Expectations

In my previous post, I mentioned that the Greeleys were visiting us for the afternoon and that I expected to have another great day. It was a very good visit. We showed them a little bit of our world. Kate was late in getting ready, so we had them meet us at Panera. We chatted briefly before driving to Bluefish Grill for lunch. We introduced them to our friends out there, the hostess, our server, and the manager.

We caught up on their lives as well. Scott had recently returned from a three-week trip to Native American land in Arizona and New Mexico. This was another one of his many trips with students. He is preparing a video of the entire trip for them. He showed us three-quarters of it yesterday. Very impressive and very interesting. While Kate and Jan had a conversation, Scott gave me a fascinating Cliff Notes summary of the trip and culture of the various Indian tribes.

At 5:00, I received a phone call from a former housemate at TCU. I told him he called at a good time and would never guess who was with us. When I told him, Kate responded with great surprise and said, “Scott Greeley? I didn’t recognize you.” I was equally surprised at her reaction. Although I know she can’t remember their names, it never crossed my mind that she would have spent more than five hours with them and not know who they were.” I have to believe it was a momentary lapse. I do know that she usually knows my name, but sometimes she forgets. When I tell her, she often says, “I knew that; it just slipped my mind.” Whatever the reason, it got my attention.

Expecting a Good Day

Good morning. It’s a beautiful morning here. I hope it’s the same wherever you are. I slept a little later this morning (6:00) but still got in a morning walk. While walking I finished listening to Bradbury’s Dandelion Wine. It’s been around a good while, but I had never read it. My friends Tom Robinson and Bruce Morton had recommended it to me. Great recommendation. One of the best books I’ve read in a while. The balance of the walk I started Hemingway’s The Sun Also Rises. I thought this was one I had read as an early adult, but I don’t remember a thing. I Know that I read a couple of his books long ago and liked them.

We had a good experience with the sitter yesterday. On Monday, Kate seemed less enthusiastic about her time with Anita. Most of the time I don’t tell Kate I am going to be going out until just before the sitter arrives. Yesterday I told her at lunch. It didn’t appear to bother her at all. About fifteen minutes before Mary arrived, I told her again that I would be going to the Y and that Mary would be with her. Once again, she seemed fine with that. She expressed no reservations at all. When Mary arrived, Kate greeted her as warmly as ever.

When I got home, they were both sitting in the family room. They had been to Panera though Mary said they didn’t stay long. She said that Kate wanted to come back home to see if I had come home. Although that may have been a sign of wanting to see me, it did not appear that Kate had been disturbed at all that I had been gone. After Mary left, Kate commented on how nice she is and what a good driver she is. Now I am eager to see what happens with Anita on Monday.

Over the past ten days we have had an unusual amount of time with old friends. Kate and I have enjoyed that. Today is bound to be another good one. The Greeleys from Nashville are coming in for the afternoon. They’ll be here for lunch.

The couples we’ve seen recently led me to think about our very closest friends. There are five couples. We have known them for more than fifty years. (Scott Greeley, who will be here today, and Kate have known each other since infancy. I know there must be others, but that’s the longest-lasting friendship among any of the people I know.) Each couple has been married over fifty years. All of the men have been college profs though two of us found a home in the business world. We come from very similar religious backgrounds and we share similar religious and political views. All of these ties make for very special times when we are together. Today will be another good day.

At Lunch

Shortly after we sat down to lunch, Kate looked across the table at me and said, “I’m sure glad I married you.” She paused for a moment. Then she said, “What’s your name?” I told her, and she asked, “What’s my name?”

As we prepared to leave, our server wished me a Happy Father’s Day. I said, “I get a double this year?” She and Kate looked puzzled. The server said, “What do you mean?” I explained that this year it was not only Father’s Day but is also my birthday. Kate’s expressed surprise. She covered her mouth with her hand. Then she looked at the server and said, “You gotta get me outa this.”

Mike and Me

I think most caregivers have an interest in how their experiences compare to others. That is certainly true for me. Since Kate’s diagnosis, I have read quite a few books written by other caregivers or people with dementia. The stories and the ways in which they are told are very diverse. I always take special note of both the similarities and differences between their experiences and my own. In general, our story has involved fewer struggles and complications than the ones I have read about.

Last night, I started a new book, Mike and Me, by Rosalys Peel. I was immediately struck by several ways that her experience with Mike was like Kate’s and mine. It’s far too early for me to comment in detail, but one thing stands out. It sounds like their relationship and approach to living with Alzheimer’s is very much like our own. From the outset and the end, they were committed to taking advantage of their time together. They knew there were many aspects of the disease that were beyond their control. Their focus was on those things they could control.

Their story provides an optimistic perspective on a disease that brings with it a host of challenges and adjustments for both the PWD and the caregiver. There have been times when I felt I didn’t want to talk or write about our experiences because we have gotten along so well. Many caregivers gain support and encouragement from the struggles of others. I learn from those. They help me appreciate our own situation, but I draw my greatest support from those who have successfully maneuvered their way through this disease. Interestingly, Twitter has introduced me to many of those stories. Mike and Me is one of those.

PWD are not all alike. Neither are their caregivers. Despite the immediate connection I feel with their situation, I suspect (too early in the book to be sure) there is a difference between Kate’s approach to her diagnosis and Mike’s. Kate has always wanted to be private about it. It’s been 7 ½ years, and she has only told two other people about her diagnosis, her brother Ken, who also has Alzheimer’s, and her best friend Ellen.

Except for the first few months after the diagnosis, she has not talked with me to any extent about it. At first, we had conversations that involved how we felt and how we wanted to respond to it. For several years, she made passing reference to it. I don’t think I have heard her say anything about it for more than a year or two. I seriously wonder if she recalls that she has AD. My natural inclination is to talk about how she is feeling. I can only infer from her behavior. I’m able to tell when she is up and when she is down. I’m glad to say that she has many more “ups.” That is especially true during the past couple of years. In the early stages, she experienced frustration which prompted her low moments. It appears that she no longer associates her behavior with AD. Thus, there is no frustration that I can detect.

Kate’s choice has been to simply live her life as normally as she is able. That may have turned out to be a good thing. She hasn’t let AD dominate her life. That is definitely the case at this stage of her disease. We still enjoy life and each other. She’s happy. That makes me happy.

Yesterday

We had another good day yesterday. It was a good example of how little time we spend at home on a typical day. Kate slept a little later, but we made it to Panera for almost an hour before going to lunch. After that, we came back home. That left us about two hours before our hair appointments at 3:00. Knowing that Kate doesn’t like to stay at home for long, I gave her an option to go to Barnes & Noble. She opted to stay at home.

About an hour and fifteen minutes later, she got up and went to the bathroom. When she returned, she was ready to go. It was 2:30, so I asked if she would like to go for our haircuts then or wait another fifteen minutes at home. She wanted to go the hair salon. That’s what we did. As it turned out that worked well. The person who cuts our hair did not have a 2:30 appointment and took her right in. It was a day for color, so I had time to run back home for a while before returning an hour later for my haircut.

By then it was 4:00. That left us time before we were to leave for jazz night at Casa Bella. I asked if she would like to go home or to Panera. She wanted to go to Panera. I have often commented about the importance of Panera and other restaurants to both of us. It puts us in centers of activity. We often see people we know and engage in brief conversations. In addition, we meet new people who also come regularly.

Although Kate obviously enjoys being at Panera, I have never heard her make a comment about it until yesterday. She loves children and had been watching a young child in his mother’s arms as she got herself a drink. Then she said, “Panera’s a nice place to be.” She went on to say something about the surroundings and the people that we see. When she says things like this, I am reminded of how much she takes in. It’s a happy moment for me. It also makes me think. I’m afraid I sometimes underestimate her. I know it is common for other people to underestimate what people with dementia can understand. We are easily drawn in that direction, even caregivers who should know better.

We left Panera in time to change clothes before going to Casa Bella. When Kate was ready, she was carrying a turtleneck sweater and pair of pants that go with an old warm-up suit I used to wear to the Y in the morning. I didn’t say a word. She brought them to the car but didn’t take them into the restaurant. I would have said something if she had started to do that.

It was another beautiful evening of music and socializing. We sat with one couple we sit with every time we go for one of their musical evenings. That’s three times a month. The other couple has joined us several times in the past few months. They are all interesting people, and we get along well. Kate doesn’t talk much but enjoys being with the group, and she loves the music. It was a terrific way to end the day.