Welcome to Living With Alzheimer’s

January 1, 2020

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 and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

At the time of this site’s launch on January 21, 2018, I uploaded almost  700 journal entries. Since then, I have added 1000 more. I continue to write new posts, but  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.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. The past year Kate has declined significantly and is now in Stage 7 of the 7-Stage Model of the Progression of Alzheimer’s, but our relationship remains strong. She expresses more irritability now, but she is also much more dependent and very appreciative of what I do for her. Yesterday, she thanked me for taking care of her, and said, “I don’t know how you do it.”  None of us knows what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

Ken and Virginia’s Visit

Today is the last full day we have with Kate’s brother and his wife. The visit has gone well. We have focused on being together. Except a short drive through the continuing care retirement community that we will be moving to next year, we haven’t done anything special apart from eating out. I was interested in learning more about Ken and Virginia’s move to a similar community this past November. They seem to have adapted well. In their case, it involved a change of cities. They are now closer to family. We have had time for conversation.

I was especially pleased when Kate and Ken had an hour or so to look through a book he had recently given her. It contains a large collection of photos of their hometown of Fort Worth. Virginia and I adjourned to the living room, so we couldn’t hear their conversation. The fact that they spent so much time was a good sign that Kate enjoyed it. This was right after returning home from lunch yesterday. That is a time she normally rests. They finally stopped because she was tired. Ken mentioned that she also began cry as he read and told her about several of the photos. One involved the deaths of a basketball team many years ago.

It helps that Virginia and Ken are sensitive to Kate’s need to rest and have gone back to their hotel an hour or two each day. They understand that she has to work hard to keep up with a group. We have followed our daily routine though she has gotten to bed later at night. I think it is good for her to have a little extra stimulation. I feel very strongly that she and Ken should make the most of this visit. The next one is likely to be very different.

The only concern I have had is maintaining Kate’s involvement in our conversation. Virginia and I are the talkers in the group, and we have dominated. There is a certain inevitability to this. The nature of the conversation has to be rather limited for Kate. I also recognize that she is approaching a time when it won’t be possible for her to join in a conversation no matter what the rest of us do; however, I don’t want her to feel excluded from the group. I hope this afternoon Kate and Ken will have time for themselves. I may also step back from the conversation and let the three of them have some time.

What makes for a good day?

It is far from unusual for me to say that Kate and I have had a good day, but what are the elements that make it so? Number one on the list is Kate’s happiness. My contact with other caregivers suggests that I am not unique. Whether caring for someone or just living with someone who is perfectly healthy, one’s happiness is vitally linked to the feelings of the person you love. Fortunately, Kate is typically happy.

There are a number of other things lead me to say we’ve had a good day, and they all play a role in Kate’s happiness. They include my not having to wake her, getting up early enough to make a trip to Panera and return home for a rest before going to lunch, having a rest after lunch, and having time for other pleasures like looking at photo books, reading, social interaction with friends/family, and events like our music nights at Casa Bella.

That is exactly what happened yesterday. Kate woke up on her own before 8:30. She was in a cheerful mood, and we were at Panera about shortly before 9:30. She was tired from getting up early and ready to go home at 10:00. She rested for an hour. Then I told her I would like to take her to lunch. She thought that sounded like a good idea. We went to one of our favorite lunch places and came back for another rest for about an hour and a half.

When her rest was over, I suggested we look at her “Big Sister Album.” While we were going through it, Ken and Virginia arrived. The flew in from Texas for a long weekend visit. It was our first time to see them in a while. We enjoyed visiting with them and then went to Casa Bella for Broadway Night. It was an excellent program featuring music from the 1940s. We were familiar with every song. To top it off the singers and accompanist were quite good. We don’t normally pack in this much in a single day, but it was all done at a leisurely pace. It was a good day.

Delusions, Hallucinations, Dreams, and Paranoia

It is common for people with dementia to experience delusions, hallucinations, dreams, and paranoia. From time to time I have mentioned some of Kate’s experiences with them. They appear to becoming a regular part of our lives.

One of the most common is believing there are other people in the house. I usually discover this when she puts her finger to her lips and very softly says, “Shhhh.” Other times she makes references to “them.” I have never figured out who they are, but sometimes, like yesterday, she explains that they will hear us and “spread the word.” She went on to say how they like to gossip. I told her I didn’t think there was anything bad that anyone might say about her. She thought I was naïve. We were in the car on the way to dinner, and it wasn’t until we got to the restaurant that she was diverted to other things.

When we arrived home, she stopped to look at something on top of the dryer. She put her finger on several places. Then she told me she couldn’t catch them. I didn’t go back to look, but I didn’t see anything as we walked through the laundry room.

Something else is becoming more common. It is the little “thingies” in her hair, around her eyes, and between her toes. Running her fingers between her toes has become as much a focus of attention as pulling her hair. After she was in bed last night, she called my attention to something new. She thought “they” were on various parts of her body. She was trying to rub them off. I asked if they were painful. She said they weren’t. She rubbed her finger across her chest. Then she held her finger up and said, “See.” I told her they were quite small. Fortunately, her concern didn’t last long. I think that coincided with my starting a YouTube video of a Julie Andrews concert. She focused her attention on that. I’ve read about other caregivers using diversion techniques to solve problems like this. I am now grasping the value of that with Kate. Since memory doesn’t last long, redirecting attention often works.

Talking in her dreams is also more frequent. Prior to Alzheimer’s, I don’t recall her having these experiences. They don’t occur with any regularity. They are periodic and there have been a couple of themes. In the early years after her diagnosis, they focused on her classroom and/or library experience. She explained or gave instructions to her students. That disappeared long ago. I take that as a consequence of her loss of those memories.

More recently, her dreams have dealt with young girls or women who live in impoverished circumstances. They include her work with a program to provide education for them or to establish such a program. One of those occurred two nights ago when I got into bed. I thought she was asleep, but she started talking to me about our working together to create a program that would help people in need. I could never figure out exactly what she wanted to do but told her I would help in any way that I could. This conversation lasted fifteen minutes or so. I am pretty sure that she was awake. That makes me think about the difference between hallucinations and dreams. I suppose I would use the term hallucination if it is an experience she has when awake. The same experience while she is awake would be a dream. Whatever the definition, Kate has more of these experiences than she has before.

Most of these experiences do not bother me. The ones that do are those that disturb Kate. The most common type involves other people who might be out to do some harm to her. So far, these experiences have only involved her belief that people are saying or would say bad things about her. As we were about to leave the house last night for dinner, she was frightened by something and held herself close to me. She didn’t want to talk about. Then later while she was brushing her teeth, she insisted I remain right beside her while she brushed her teeth. It wasn’t said in anger, but fear. I wonder what lies ahead.

Cheerful Days

In many ways the past two days were like a lot of other days we have. The difference was that Kate was cheerful all day long. Both days she awoke early and was in a good mood.

As she got out of bed on Tuesday, she called me by name. I took her to the bathroom. Afterward, she wanted to go back to bed. I told her I would be in the kitchen if she needed me. I added that I would stay if she preferred. She told me it would be all right if I left; however, she looked as though she wanted me to stay. I told I would be glad to bring my things to the bedroom and sit in the chair beside her. That made her happy.

Instead of leaving when she fell asleep, I stayed until it was time to get her up. That worked well because she woke up periodically and saw that I was there. Several times we chatted briefly. When it was time to get her up, I asked if she was ready. She said yes. I didn’t rush her at all. I told her I would get some clothes for her. It was another fifteen minutes before I told her I had her clothes. She got up very easily. I the the gradual process helped.

It wasn’t long before the sitter arrived. I hadn’t mentioned that I was leaving and thought she might be uneasy as I left. That turned out not to be a problem. She greeted Cindy with a hug and wasn’t phased when I told her I would be going to Rotary. The rest of the day went smoothly as well.

Yesterday was Kate’s birthday, and I was hoping she might have another good day. My wish was granted. She never showed any excitement or interest in its being her birthday; however, she did appreciate the emails, cards, and calls she received. She was especially touched by two cards. One of those was from our daughter. Kate was in tears as I read it to her. The other was from our twin grandsons. She was taken by the cards design. It had a pop-up when she opened it. She was fascinated by it and looked at it for a long time.

The celebration continued at dinner last night. After I had given the server our order, Kate noticed shrimp on the menu. The server, whom I had told about her birthday, asked Kate if she liked shrimp. When Kate said she did, the server said, “I’ll treat you to a shrimp cocktail.” Kate has always loved that. Although her eyesight complicated eating it, last night was no exception. Several times she dipped the tail of the shrimp in the sauce and took a bite.

The day ended with phone calls from our children and Kate’s brother and his wife who will be here for a visit tomorrow. That should be good for her as well.

Our experience does not mean there was any improvement in Kate’s memory or her confusion. For example, yesterday afternoon while she was getting her hair done, I went to the ATM at the bank across the parking lot. The stylist told me later that while I was gone, Kate said, “Where is my, uh, boyfriend?”

As we prepared to leave home for dinner, Kate said, “Let’s get out of here. I wanna go home.” There isn’t a way to stop the fundamental symptoms of Alzheimer’s, but, thankfully, we are still able to enjoy ourselves. I am grateful for that.

Visiting Friends

I have talked a lot about the role that music and eating out have played in our lives, but I haven’t said as much about our connection with friends. I am thinking especially of friends who live out of town. With one exception, our friend Ellen who is in memory care in Nashville, Kate and I don’t see them frequently, but they, too, have provided with a support network that continues to be important to us. Saturday, we visited Ann and Jeff Davis, a couple we first met in graduate school at the University of Wisconsin. Later, John and I were colleagues at the University of Tennessee. They moved away more than twenty years ago and now live in Nashville.

Kate has changed a lot since we last saw them, and I was glad when Ann sent an email asking if we might plan a visit. Kate’s memory of them has diminished, but I thought she would probably respond well to them once we were together. For the most part, I was right about that.

After taking our seats, we quickly broke into two different conversations, one between Ann and Kate, the other between Jess and me. It sounded like Kate was doing well though I recall her dodging a question she couldn’t answer by tossing it to me.

We were there a couple of hours. The conversation soon drifted to one among the four of us. That can be, and was, hard for Kate. She wanted to be involved, but that is difficult. Her poor memory means her vocabulary is substantially reduced and she doesn’t remember the past and is not familiar with current events. That’s makes it tough. She didn’t, however, say anything that made me think she was uncomfortable. That’s good.

As I look to the future, I am hopeful that we will continue with these trips. Right now we have another one scheduled to see Jan and Scott Greeley in Nashville two weeks from now. That’s another special connection for Kate. Her parents were close friends of Scott’s parents. Kate and Scott were crib mates in the early days of their lives. She no longer retains a memory of their times together, but she almost always beams when I mention a visit with them. At this time in our lives, relationships like these are especially meaningful.  We have shared a lot of experiences together, and I plan to keep them up unless it becomes uncomfortable for Kate.

Unanticipated Issues

Yesterday things were going well. Kate woke up early, showered and dressed without any difficulty. I was especially pleased because we were going to visit friends in Nashville, and I was eager to eat an early lunch before our departure. We were also early enough to get to Panera for a short time and get back home for Kate to rest another hour.

Lunch went well until very near time to leave when she started looking for her napkin. At first, I didn’t know what she wanted because she couldn’t remember the word for napkin. When I asked if she was looking for a napkin, she said she was. I pointed out that she had put under her plate with her utensils. She didn’t understand and said, “Where is it?” I pointed to it. She pointed to her salmon and said, “This?” I told her it wasn’t and reached across the table to point at it. She didn’t see it. Then I put my hand on it and said, “This is it.” That didn’t work. Then I asked her to pick up her plate. She didn’t understand. I picked it up and put it to the side. Then I showed her the napkin and told her she could wipe her hands with it. That didn’t work either, so I said, “Let me show you.” I got up and went to her side of the table where I picked up the napkin and started wiping her hands. Her mood changed immediately. She said, “I wanna’ get out of here.”

It was a frustrating situation for both of us. I didn’t have any trouble understanding that she was having two problems, both of which are directly related to her Alzheimer’s. One is her vision. The other is her ability to understand directions. I was trying hard not to show my frustration, but I wasn’t successful. As we left the restaurant, she said she couldn’t do anything right. I thought she was upset with me, but it turned out she was only thinking about her inability to follow my instructions. I felt guilty for making her feel that way. After we had been on the road to Nashville about fifteen minutes, she was fine again.

This episode is a good example of how quickly things can change. It is also a reminder of something I already know. I need to be very careful how I respond in situations like this. She is very much aware of her problems, and I don’t want to diminish her sense of self-worth.

Increasing Dependence

I have often commented on Kate’s dependence on me with respect to finding the bathroom, the full variety of bathroom activities, dressing, and helping with most other activities of daily living (ADLs). That continues, but I have observed other ways in which she is dependent. I’d sum it up by saying they involve my being a security blanket.

I mentioned one of those in my previous post when she didn’t want to go to lunch with the friend I had asked to take her. She has been to lunch with her on a number of occasions before and after her diagnosis, and, yet, she wouldn’t agree to go with her yesterday.

Yesterday she had a similar experience with the sitter. This one was with the sitter who has been with her more than two years. Kate wanted to rest after lunch, just fifteen minutes before Mary arrived. That’s not unusual. When I returned four hours later, she was still resting in her recliner although awake. I asked Mary if she had been there the whole time. She had. Mary said, she has encouraged her to get up, but Kate didn’t want to.

After Mary left, she asked me to show her to the bathroom. As we walked hand in hand, she expressed her feelings more clearly than she usually does. She conveyed that she liked Mary, but she said, “It’s good to be with somebody you really know.” She was relieved that I was home. When we reached the bathroom, I started to leave. Then she asked me to stay in case she needed help with anything. I frequently sense that she is at ease with me even when she doesn’t know my name or our relationship. This time, however, it seemed like she both knew me and that she was very grateful I was home.

As she finished washing her hands, I started toward the kitchen. When she came out of the bathroom, she didn’t see me and called to me. I went back to her. She was so relieved when she saw me that she was almost in tears.

We went to dinner at a nearby pizza place. Before I stepped away from the table to pay for our meal, I told her I was going to pay and would be back. I know she can’t remember, but there was no one ahead of me. In addition, The check out wasn’t too far from our table, and she has never been uneasy before. As I approached the table after paying, I saw that she had a worried look on her face and was looking all around for me. When I walked up to her, she said, “I am looking for my husband.” When she looked more closely, she recognized me. Again, it was an emotional experience for her.

Here is my own interpretation of what’s happening. She is sinking deeper into a state in which she can’t remember anything. That makes her afraid. I am the one who is most often with her and helps her. Of course, we also have a bond that is very strong after fifty-six years of marriage. When you put these things together, it’s not difficult to see why she might feel dependent. This has an advantage with respect to helping her with so many things. She still likes to retain some independence, and I think that is a good thing. Normally, however, she is usually receptive to me help. That makes caring for her much easier.

A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.