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

Saturday Afternoon Conversation

 

Kate and I had a pleasant day yesterday though she was somewhat confused about where she was for an extended period of time. She also experienced some delusional behavior during the afternoon. Here is a sample of some of the things she said.

As we walked into the family room after lunch, she said, “I remember being here before.”

As usual, she rested and actually went to sleep. She woke up and said, “It’s really nice to be back here.” I said, “Yes, it is.” She said, “You know I was born here, don’t you?”

A few minutes later she said, “It’s a nice place. The owner has done a lot of things.” I asked, “Do you know the owner? She said, “I think I am one of them.”

She moved from the recliner to the sofa to rest a little more. Off and on for an hour she made numerous comments. I jotted down a few of them. In each case, she seemed to be talking with someone else, not me. She often does this while sleeping at night, and sometimes responds to me if I speak to her. Yesterday’s experience was different. It was much more like something I reported on a week or so ago. She was awake but talked in a style that was more like she was dreaming. Her eyes were open and displayed nothing that would suggest she was asleep. She also talks to herself. It was more like that except that I was just a few feet away from her. What she said frequently seemed out of context as though I were hearing her side of the conversation and not the person with whom she was speaking. Here are a few examples.

“She said we could stay this night and see what we like about it.”

“I think I will close my eyes, but not for long. Then I will get up and make some friends.”

Looking up at the ceiling and laughed she said, “I can see you. . . Oh, look.” She was pointing to the trees out back.

“Wouldn’t it be nice if we could sleep here.? That would be nice.”

“I like this room.” <pause> “You know, this is bigger than I thought.”

“Yeah, I like this place.”

“Do you live here? <pause> I don’t remember her name.” (She chuckles.) “Yeah.”

“Well.” <pause> “Uh huh.” (She chuckles.)

“It looks so pretty out there. Those tall trees. I don’t know what that blue thing is. That real pretty blue. Can you see it?  <pause> Uh huh, right over there. You got it.”

“I’ll just rest here a while.” “Yeah, we’ll come back. You’ve been so nice.”

“That girl over there talked with us a little. She lives here. <pause> To live here. That would be fantastic. We’ll just have to see.”

“My goodness, when did you come in. You’re a pretty lady. <pause> Uh huh. There are a lot of people here.”

I wondered what she would be like when I got her up for dinner. She seemed normal. I didn’t notice anything during or after dinner that was like the way she was in the afternoon. It reminds me somewhat of the urinary tract infections that my dad used to get during his time in a skilled nursing facility except that she exhibits the symptoms so infrequently. This was only the second time she has been like this other than when she is sleeping at night or when I am in another room. I will be watching out for any further signs and be prepared to contact her doctor if I think it is necessary.

 

Weekly Data on the iPad

After several years during which Kate worked jigsaw puzzles on her iPad 6-8 hours a day, she has decreased her time substantially over the past few months. She has leveled out the past five weeks. Her total screen time for the past week was 3 hours and 15 minutes. Her daily average was 27 minutes, close to her 4-week average of 25.5 minutes.

The time she would have spent on her iPad has been replaced by resting and looking at photo books. The latter she usually does with me and also with the sitters. Last night was a notable exception. After dinner, she and I spent about thirty minutes looking through her “Big Sister” album that her brother made for her. Then I wanted to watch a football game, and she wanted to continue. She did that for almost forty minutes. I was pleased to see that because that would give her something she could do on her own; however, I can easily see that it might be hard to retain her interest for long since she has such difficulty recognizing the people in the photos. That includes her as well as other members of her family. On the other hand, sometimes she does recognize her mother, her father, her brother, and herself. Maybe that can sustain her for a while. I am sure both of us would like that.

Music Continues to Provide Needed Therapy

Kate and I have relied heavily on music as a form of therapy. Unlike so many other things, that is something that has not yet become a thing of the past. I would have to say though that the way we have used music has changed over the years. At the beginning, we entertained ourselves by attending musical events . These included opera, musical theater, and a variety of concerts. Over time, I included more music at home and in the car. Unlike the early musical events, I chose music for its therapeutic benefits rather than just entertainment. Initially, I used music to calm Kate when she had a panic attack. Those occurred exclusively when I rushed her to get ready to go places. I would play the Second Movement of Brahms Violin Concerto and similar movements from other concertos. That seemed to relax her.

Before we stopped going to evening events, I expanded our music at home with a wider variety of music. A year and a half ago, I bought a number of DVDs of musicals that were a good way to end the day. Kate especially liked Les Miserables which she watched seven times in seven weeks. Ultimately, she tired of videos of musicals, and I have since relied on YouTube videos of concerts or portions of them for our evening time for relaxation before going to bed. Among those, I have found the Andre Rieu and the BBC PROMS concerts particularly good. Often, however, I have done a search on a particular singer. Then I let YouTube follow with whatever their algorithm selects for us. The best thing about YouTube is that they always have new videos and a wide diversity of musical genres.

The musical programs at Casa Bella stand out for the way they combine both music and a social occasion that Kate has been able to appreciate. Music is clearly the greater draw, but the fact that we have sat for years with essentially the same people has made it easier for Kate to enjoy each evening. Over the past six months or so, I have had an increasing concern that she is becoming less comfortable with the social aspects of these evenings. That is largely because we more frequently have been seated at a table with as many as six or seven other people, some of who we haven’t known. That makes it more difficult for Kate to follow and to participate in the conversation. That has made me think about requesting a table for two rather than sitting with a group. Recently, however, we have had some evenings that have given me reason to believe we may be able to continue somewhat longer at our regular table.

This past Thursday was one of those times. There were six of us, but we have sat together with one another for several years now. Of course, Kate can’t remember that, but she is comfortable when she is with them. As I suggested earlier, it is music that is the primary attraction, and last night was the best night of jazz that we’ve had. The singer and the man on the keyboard were superior to others we have heard previously. The crowd responded enthusiastically. Kate was, perhaps, the most enthusiastic, and that may be an indicator of an ultimate problem.

She has always been more expressive of her pleasure than others sitting around us. Off and on throughout most of the songs she likes best, she says both “Wow” and “Oh.” She seemed to be louder this week than in the past. That would fit with her other expressions of emotion lately. This wouldn’t be a problem at all when the audience is applauding, but it seems a bit “over the top” during the music. She can be heard easily at our table and those next to us. The people with whom we sit are very understanding, but I occasionally wonder if this is ever annoying to them. At some point, I may speak with our friends at our table and gauge what I think is best. It may well be that the combination of Kate’s feelings about being with others and emotional behavior will be the thing that leads me to sit at a table for two. Whatever we do music is no less important for either of us today than it was at the beginning of her diagnosis, and I am optimistic that it will remain that way for the foreseeable future.

Problems with Toes, Teeth, and Hair

Kate’s “hair-pulling” is an old story, but I’ve said less about her toes and teeth. They are beginning to play a more prominent role in her personal care. Let me tell you about an episode earlier this week.

It was a very good day. Kate got up to go to the bathroom around 5:30 and went to bed. She got up around 7:30, and we went to Panera shortly after 8:00. We came back to the house and relaxed until lunch. She was in a good mood. We had a nice conversation at lunch. The sitter came at 1:00. Kate received her warmly and didn’t seem disturbed in the least when I left. She was happy to see me when I returned but didn’t express any sense of relief as she has on a few occasions. We had a good experience at dinner.

While we were eating, she told me she was likely to get to bed early. I didn’t think much about it since she often says that but doesn’t get in bed. I have to admit, however, that she has been getting into bed earlier lately now that she hasn’t been occupied with her iPad. That night was one of those times.

First, she went to the bathroom. She spent 20-30 minutes “brushing” her teeth. She didn’t really brush them all that time. Much of the time she was rinsing her mouth with water and using her fingernails like dental floss. She always feels like she has food caught between her teeth. I often help her with flossing, but that doesn’t seem to work. She finally gave up and came back to go to bed. I got her nightly meds and helped her get into her night clothes.

She was disturbed about her teeth. She mentioned she hadn’t been able to get all the “bees” out. She followed that by other words that didn’t fit what she meant. She was talking about something in her teeth. She also talks the same way about things between her toes and in her hair. Sometimes she refers to them as “these little things” and says they are “smart.” She says they know when you’re trying to get them. I was able to calm her by talking to her softly and telling her I would help her. That is when she focused her attention on her toes. She wanted me to get a towel or wash cloth and get “them” out. I followed her instructions, and she felt better.

Then she got in bed and started pulling her hair. It wasn’t long before she became frustrated. She said she was tired and hadn’t been able to finish and would have to do it tomorrow. A few minutes later, she asked me to come over and pull her hair for her. I did that for a couple of minutes before reminding her she was going to rest and work on her hair in the morning. She said I was right that she needed the rest and thanked me for helping her. She was fine after that; however, I don’t expect this to be our last episode with “them.”

A Rare Experience

Kate and I have been married fifty-six years, and I can’t recall a time when we have sat down to breakfast together except when traveling or the few occasions when she has attended a YMCA breakfast with me. The reason is simple. I like breakfast, and she doesn’t. In addition, I have always gotten up earlier than she does. When she was working, she used to have some juice and yogurt just before leaving the house. She continued this after retiring until we started going to Panera for a muffin. Since she started sleeping late almost a year and a half ago, she hasn’t been eating breakfast regularly because we go directly to lunch.

I am not expecting that routine to change, but yesterday morning was quite different. She wanted to get up to go to the bathroom at 5:30. She was back in bed in twenty minutes. I stayed up and got ready for the day. As I was about to dish up my scrambled eggs, I looked at the video cam and saw that she was about to get out of bed. I went to the bedroom and found that she was wide awake and quite cheerful. I assumed she wanted to go to the bathroom again, but she said, “Do we have anything to eat?” I told her I had some scrambled eggs and some granola but no milk. She wanted the eggs. That was quite a surprise, I can’t remember the last time she had scrambled eggs. The only times I recall her having eggs at all is when we have been out for breakfast, and then it is usually pastries, pancakes or Eggs Benedict.

I walked her to the kitchen, got out two plates, and split the eggs between us. She enjoyed every bite and chatted too. I didn’t notice any of her usual grogginess. Having given her half of my breakfast, I needed a small dry serving of granola, but it was a special occasion. It’s a rare day when we have breakfast together.

Two Happy Moments

As Kate continues to decline, I expect that we will experience more sad moments than we have had in the past. I hope that I will be able to say that we still have happy ones as well. That is certainly true right now. Two days ago, for example, she got up early. She seemed to be in a good mood. She did ask my name and our relationship multiple times before she got dressed. Each time I mentioned that I was her husband she was surprised but accepting.

When she was dressed, she asked if she could lie down. I told her she could and then said, “I love you.” As I said it, I remembered the old song “I Love You a Bushel and a Peck.” When I mentioned it to her, she also remembered it. Then she said, “We could sing it together.” I took out my phone and searched for the song. Then I played it through our audio system. We forgot most of the lyrics, so I pulled them up on my phone. We must have sung the song five or six times. It may have been a little silly, but it was fun. Kate really got a kick out of it. I think it also made it easier for her to get up since her already good mood got better. I just know that right after our singing, I said, “Now, I’d like to take you to lunch.” She got right up.

We had another Happy Moment at dinner that night. We were having dinner at Chalupas when I mentioned how nice it was that we enjoy the simple pleasure of being together. She picked up on that and began a conversation about how fortunate we are in so many ways. From there, she gravitated to talking about the people who are not as fortunate as we are in our marriage and many other aspects of our lives.

I enjoy hearing her speak so naturally. She didn’t seem to have a care in the world. She is often concerned about what she should or shouldn’t do or say. She isn’t that way a lot of the time, but she does frequently ask me to watch her or to keep her from doing “something wrong.” She knows she does a lot of things that aren’t right. It’s good to see her at moments when doesn’t have those concerns. They make for quite a few Happy Moments for both of us.

Thinking about Travel

Following all our trips, I consider whether or not we are likely to take others in the future. I am glad to say that our overnight trip to Nashville this past weekend went well. I think Kate should be able to continue this kind of trip a while longer. The key is not the travel itself. It seems like the distance is not a problem for her. I believe it involves the type of situations in which we find ourselves that is more relevant.

For the most part, the kind of things we did were very similar to those we experience at home. Kate wasn’t under any additional pressure. We arrived at our hotel on Saturday with enough time for her to rest about an hour before going to dinner. The restaurant was right behind the hotel. We could easily walk the short distance. We went early, 5:30, and were back in our room by 7:15. It was a pleasant evening. Kate was tired and relaxed in bed while I watched the LSU/Alabama football game.

Kate was able to take it easy Sunday morning. She was awake for about thirty minutes around 10:00. I turned on the TV and watched “Meet the Press.” I woke her at 11:00 to get ready for lunch. She didn’t want to get up, but I was able to use the excuse that we needed to check out of our room. That worked, and we arrived for lunch at 11:45.

We ate at Maggiano’s which is less than a five-minute drive from our hotel. I used valet parking at the mall where the restaurant is located. I did the same thing last time and found that much better for Kate. She can’t remember the restaurant by name or even recognize that we have been here for lunch during each of our last four or five visits, but I like to think she has a comfort level being there. The manager remembers us and always drops by our table to greet us.

From there we drove to see Ellen and were there a full two hours. Although she appeared to have declined a little since our previous visit with her, the visit went well. We arrived in Knoxville around six and stopped at Panera for a quick bite to eat before going home. A couple from our church came in shortly after our food was ready. We invited them to sit with us. We had a nice visit with them and then went home.

The weekend had gone well. It was an easy one for Kate. That is the way these visits to see Ellen usually go. I think we will continue to visit her for a while longer but recognize that both Kate and Ellen are declining. I suspect that when our visits end it won’t be a result of the challenges of travel but their respective health issues that are the cause.

“On the Road Again”

“Real” travel is a thing of the past for Kate and me, but we occasionally take one-nighters. I am writing from Nashville where we will visit our friend, Ellen, this afternoon. She has been in memory care for almost two years. We have visited her about every 4-6 weeks since here stroke four years ago this past August except for a couple of times when she was in the hospital or rehab. Sometimes we also visit with other friends who live here. We’re just visiting Ellen on this trip. As we have done for the past 6-8 months, we stayed in a hotel overnight. That makes it a little easier than going and coming in one day. Besides that, we have a nice meal at one of several restaurants we like. It makes a nice change from our regular routine.

We got off to a good start when Kate woke up early. After a trip to the bathroom, she took a shower and returned to bed. I let her rest until 11:30 when I got her up for lunch. We had a relaxed lunch at Bluefish before leaving town and had an especially good time. Kate said something that led into a discussion about religion. It wasn’t a deep discussion, but she talked about the contribution that make religion makes in support of programs designed to help others.

We had an unusually good time at dinner. We ate at a very nice Italian restaurant. I am grateful that we can still have experiences like this. At some point, I suspect we will discontinue eating out. In the meantime, we both enjoy it and living as normal a life as we can at this stage. I gave out two of my Alzheimer’s cards, one to the hostess who seated us and another to our server.

There were only a few things that might have given clues to her diagnosis. The first was getting to our table and getting seated. She performs both tasks with great care. That’s because she is unsure of what to do. We had to go up one step to the area where our table was located. That adds an extra challenge for her. Getting into her seat presents two problems. One is knowing which chair is hers. That happens even though I pull out the chair, stand there to help her, and tell her “This is your chair.” That seems a simple thing but not to a person with dementia.  The other issue is getting into the chair. She is as cautious with that as going up and down steps.

Along with our bread, we were served a bowl of white beans in olive oil. She prefers butter with her bread, but she asked about the beans. I put a few on her bread plate. She started eating them with her fingers. She liked them. She took the bowl and used the spoon that came with them to eat them as she would a bowl of soup.

The manager stopped by our table near the end of our meal. Kate told him “We come here a lot and really liked the meal.” He looked at her a bit strangely. I suspect he wondered why he didn’t remember her. The answer was clear. This was only the second time we have had dinner there. The first time would have been almost a year ago. We have eaten there for lunch, but that would have been more than five years ago.

Kate went to bed early but not to sleep. She has been up twice this morning to go to the bathroom, once at 5:00 and once at 8:00. She is sleeping soundly as I write this post. I’ll get her up in time to make our noon reservations for lunch. We should be at Ellen’s by 2:00 and head back to Knoxville around 4:00.

For years, I left Kate for a short time to eat breakfast in the dining room or area. I remember preparing signs with large lettering telling her where I was and that I would return soon. I gave that up about a year ago when I no longer felt comfortable leaving here for even a short period of time. Now I just order breakfast from room service. It’s not quite the same, but I like to eat right after getting up. Kate likes to sleep later. With room service we both get what we want though I much prefer breakfast in the dining room to our dark hotel room. Like so many other things, this is something with which I can adapt.

Dreams, Delusions and Hallucinations

Here’s another post in which I will never be able to capture the details. Let me start and see where it goes but understand you will not be getting the whole story.

Kate has talked in her sleep off and on during her life with Alzheimer’s. In the early years, the focus was almost always her teaching and library career. Most, if not all these experiences, involved her speaking to students. She was very deliberate in what she was telling them. Her memories of those days faded away long ago, but she continued her talking just in different situations.

Yesterday morning at 3:00 she had another “dream” experience similar to one she had a week or two ago. She seemed wide awake and very clear-headed. She wanted to go to the bathroom. On the way and back to bed, she looked and sounded normal but she appeared to be “dreaming while awake.” That’s hard to describe, but she talked as though we were someplace away from home. She mentioned other people. Then she said, “What do we have planned for tonight?” I told her we were going to have dinner at Casa Bella. She asked if we were going with anybody. I told her we would go by ourselves and sit with the same people with whom we usually sit. She was pleased we were going by ourselves although I thought she missed the fact that we would sit with others.

I thought that was it, but after we were in bed we spent the next fifteen minutes or so repeating the same conversation. Then we both went back to sleep. This kind of thing has occurred several times in the past. I think she has a dream about some obligation and is concerned about it. In a couple of instances, it was clear that she thought she had an appointment and needed to get ready. Most often, she just asks the question and the repeats it a number of times without any expression of anxiety.

About 10:15, I noticed that she was sitting up in bed. I went back to see if she wanted to go to the bathroom. She smiled as I got near the bed. It looked like everything was fine. We chatted a few minutes. She said, “Where am I?” When I told her we were at home, she wasn’t satisfied with the answer. She wanted to go home. At first, I told her she was at home, but that didn’t sink in.

I tried to divert her attention by taking her to the family room. She enjoyed seeing all things she usually admires, but she still wanted to go home. She was also tired. I led her back to the bed. She didn’t want me to leave her although she didn’t remember who I was. I brought my laptop and sat with her for another thirty minutes before suggesting that we go to lunch. By that time, she had forgotten about going home, and she didn’t say anything more the rest of the day.

When we got home, she had a brief hallucination as we got out of the car. She pointed to something leaning against the side of the garage. She thought it was a girl. There wasn’t anything I could see that might cause her to think that, but I just went along.

She had another unusual experience after she was in bed. She pointed to the ceiling and mentioned something about the “people over there.” I was never able to make much sense out of what she was saying. Then she said she wanted me to help her understand what was going on. I told her I would be glad to and asked what she needed to know. She pointed around the room and said something I never understood. It was another sign of her aphasia. She used a word that had nothing to do with whatever she meant. I think she was talking about all the objects in the room, but I was never clear. Periodically, she would say, “See them over there.” A couple of times, she mentioned animals in the room.

We got through the night without any special “happenings.” She was up early to go to the bathroom and was in a cheerful mood. She has been back in bed for almost two hours. I noticed on the video cam that she is moving around in bed. I’ll check on her. It’s about time to get her up for lunch. I wonder what’s up for today. Clearly, her brain is making changes. I never know where it will lead.

An Example of Kate’s Self-Awareness

Over the past few days, Kate has snapped at me several times. As in the past, she quickly apologized with tears in her eyes and said, “I shouldn’t have said that.” I’ve been struck by her awareness that she has spoken to me in a way she hasn’t done before Alzheimer’s entered the picture. Two nights ago, I was even more surprised.

We had just finished a very pleasant dinner at Bonefish Grill. I started the car, and she said, “May I tell you something?” Her tone of voice made me think she was going to say something nice about my caring for her as she often does. I was surprised when she said, “I know I’ve been hard to deal with lately, and I want you to know I’m sorry.” I was both touched and stunned. Here she is trying to adapt to the changes taking place in her brain, and she feels bad about the way she has treated me. Apart from that, I was amazed that she said this “out of the blue.” I think it had been more than twenty-four hours since she had last snapped at me. That tells me this is something that really disturbed her. That matches her other concerns related to not knowing “anything.” To me it is a remarkable example of her kind heart and self-awareness. It also increases my desire to see that she gets the best care I can give her.