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.

At the time of this site’s launch on January 21, 2018, I had made over 1100 journal entries. As of that date, I had uploaded almost  550 of them 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

 

Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

Sleeping Changes

It is 11:22, and Kate is just getting up. Even that is only after I started gently waking her about 10:50. I hate to wake her, but the sitter will be coming at 1:00, and we need to get lunch before then. As I have noted before, since coming down with the flu, she has been sleeping more. That has meant getting up later since she has still be in going to bed about the same time. Last night we went to Casa Bella for dinner and didn’t get home until 9:00. Still, this is unusually late for her to get up.

Although I think she should be over with the flu now, it may be that this is one of the aspects that is hanging on. She is not coughing much at all now, but once in a while she does. It sounds very much the way she did when she got sick almost two weeks ago. Her being tired may be another residual symptom.

I’ll continue to monitor her sleeping to see if this represents a more permanent change. I have to remind myself that two or three years ago, she was sleeping more than she has in recent years. The difference is that she was taking both morning and afternoon naps. She gave that up a good while back though she had a long nap while the sitter was here two days ago.

I have very carefully arranged for the sitter to come in the afternoon so that Kate and I could spend the mornings together. If she starts sleeping this late every day, I will spend much less time with her. On a day like today, I will have about an hour or so with her for lunch. Then the sitter will have her for four hours. When I return, it will be within an hour of dinner time. Then we are winding down for the day. That would be a big change for me. I’m not sure I am ready for that.

The Magic of Music

For those who have been active readers of this blog, you will understand how important live performances (theatrical and musical) have been to Kate and me. During the past year, the appeal of movies has declined substantially for Kate. I hate that. For most of our marriage, they have been almost as important as seeing events on stage. I wonder if and when the same will occur for live performances. I feel optimistic that it will be a while, especially after last night.

It was Broadway night at Casa Bella. We shared our usual table with the parents of the woman who currently operates the restaurant and another couple with whom we have sat on several other occasions. It was a terrific social occasion with them, and the program was outstanding. In recognition of Valentine’s Day, the music featured love songs from the past like Irving Berlin’s “Always,”  “Moon River,” and “The Twelfth of Never.” Since the audience was made up largely of people in our generation, you know it was a happy crowd.

What makes the difference for me, of course, is how Kate responded. Once again, she loved it. She exclaimed, “Wow” after every piece with enthusiastic applause. We’ve been attending these musical evenings at Casa Bella for almost five years. She has loved every one. We always leave very happy as we did last night. It is wonderful to know that we have three nights like this every month.

Getting Back to Life as Usual

Yesterday Kate and I took what I would call our first steps in getting back to normal after the flu. Kate was up somewhat earlier, and we got to Panera before 10:30. The best news of the day was that Kate’s cough has virtually stopped. That made for a much nicer day. We went directly from Panera to lunch and were back home in time for the sitter. Kate is still tired. She got right into bed when we got home. That is where she was when the sitter arrived. I brought Mary in to say hello and told Kate I was off to the Y. She remained in bed and stayed there another two hours or more according to the Mary. That is the first time I recall her resting so long with the sitter here.

I went to the bedroom about fifteen minutes ago to see if she were still sleeping. I saw that she was up. When I walked into the bathroom, I noticed that she had had another accident and went to get a towel to clean it up. When I returned, she was standing by our bed with her underwear and a pair of pants in her hands looking a bit confused. I asked if I could help her, she nodded. I asked what she needed. She said, “Something to wear.” In moments like these she looks so helpless. It is painful to watch. I went to her closet and picked out a top to go with the pants she had picked out (the ones she had worn yesterday and thrown over a chair beside the bed). I gave her the top, and she proceeded to the bathroom to take a shower. She can be very groggy in the morning anyway, but the kind of confusion I saw this morning can only be another sign of Alzheimer’s. It is just a little thing, but I see little things like this making their way into our lives. There’s no way to stop it.

This afternoon Kate has a facial at 2:00. Then we have Broadway night at Casa Bella this evening at 6:00. I am optimistic about our having a nice day.

Happy Valentine’s Day

I didn’t need a special holiday to celebrate our bouncing back from the flu. It is enough just to feel better. Today is clearly our best day in almost two weeks.
First, let me follow up on my previous post. In that one, I commented on the fact that Kate had not been in a good mood up until near dinner time. I am glad to say that she cheered up at dinner. She takes special pleasure in going to Chalupas where we eat on Monday nights. As I have described elsewhere, it is an especially friendly place where she feel very comfortable.

After that, we came back to the house where we adjourned to the bedroom where I watched the evening news, and she worked on her iPad. That has come to be a very good time of the day for us. We are both relaxed and without any obligations and know that we can go to bed any time we want.
Yesterday was a good catch up day. The only item on our agenda was haircuts at 3:00. Kate was up much earlier yesterday; so we arrived at Panera early. We stayed there about an hour and then came back to the house for another hour before going to lunch. After lunch, she was tired. She rested until time for haircuts. It was a quiet day but a nice one.

Today the sitter is coming again. I had cancelled last Wednesday and Friday because of the flu. I will go to the Y and then have coffee with Mark. We’ll have a Valentine’s dinner at 5:30 since they are booked up later. It should be another nice day.

Still Recovering from the Flu

We continue to make incremental steps forward in our recovery; however that isn’t the most important thing about which I’d like to comment. That relates to her mood today. She has been a little depressed, something that I don’t see that often. Part of the reason it made an impression on me is that she had a very good night’s sleep. She got up close to noon on Saturday and 11:00 yesterday. Today, I finally woke her up at 12:20. I didn’t rush her. She got up slowly, and we didn’t get to Panera until 2:00. Earlier this morning, I decided not to go to Rotary and to cancel the sitter. I think I did the right thing.

When she was ready, she was not cheerful. I didn’t think much about that at first. She is often not ready to engage in conversation when she gets up. She needs a little time. We were at Panera about an hour before I looked across the table and noticed that she was looking bored. I knew she was ready to go home. I asked to make sure, and she confirmed my suspicions.

It was about 3:15 when we arrived home. Recognizing that she was a little depressed, I asked if she would like to work in the yard. It’s not a beautiful day, but the temperature is warmer than we have had in a while. She indicated that she did not. I suggested that we might find a movie on TV or Netflix and watch it. She said okay without any enthusiasm. While she went to the bathroom to brush her teeth, I explored movies. I suggested an old Cary Grant and Audrey Hepburn movie. She indicated she didn’t want to watch a movie. I asked if she would like to look at some of our old photos from or past travels. She didn’t want that either. Then I gave her the iPad and told her to work on it in the family room, and I would find something. I found some old family photos her father had taken along with a couple of albums of our own and took them to the family room.

I sat down beside her and told her I wanted to show her something. I gave her the album with her father’s photos and let her look through them while I watched along with her. She enjoyed seeing them and took her time moving from one page to another. I was feeling good.

When she finished, I said, “Now let me show you something else.” I reached for a box of photos of our own and was going to show them to her. She said, “Do we have to do this now?” I told her no. I had already put on some music that I thought she would like and said we could enjoy the music while she worked on her iPad. She got up and went to the kitchen. In a minute, she had gone outside. I thought that might be a good thing. She hasn’t worked in the yard for more than a week. I think that is mostly because of the weather week before last. Last week, it was the flu.

She was outside for about twenty minutes before coming back inside. She asked if I were ready to go. I told her to give me a minute, and we would go. So here we are back at Panera where we are likely to stay for another 20-30 minutes before we head to Chalupas for dinner. I surely hope she feels better before bedtime tonight.

Reflecting on Kate’s Social Isolation

Much is written about the social isolation faced by people with dementia and their caregivers. Isolation has had a significant impact on Kate. Until her diagnosis, she was a very active volunteer librarian at our church. She took this position after working  as a librarian/media specialist with the Knoxville schools. She derived much satisfaction working at the church. Even though she was a volunteer, she spent a lot of time there and developed a good relationship with the staff. She was included in their staff meetings and social activities. She often went to lunch with several of the staff on a regular basis.

In addition to the staff, she also got to know a lot of the church members and their children. Sunday school teachers often came to her for resources for their classes. If she didn’t have anything in the church library, she would find the appropriate material elsewhere and get it to the teacher. She developed a strong collection of books and media for children. As our church has a lot of young married couples, we added lots of children. Parents brought their children to the library. Kate loves children and cultivated relationships with them. She offered story time for children in Sunday school and in our weekly day school. Kate’s volunteer work at church became a central focus of her life. She only gave it up when she recognized the symptoms of Alzheimer’s made it difficult to manage her responsibilities the way she wanted.

After her resignation, I invited her to join the Sunday school class that I was teaching. She tried it periodically but never fully engaged. We had a lot of class discussion. I think she found it too difficult to follow.

Beside the church, she had two other important social connections. One of those was her very close friend, Ellen Seacrest. Gordon and Ellen had been good friends since the early 1970s. Our children grew up together, and we spent a lot of time together socially. They were the couple with whom we celebrated New Year’s Eve many years. After leaving her volunteer position at church, the relationship between Kate and Ellen grew stronger. Then after Gordon died in 2013, they became even closer friends. Except for Kate’s brother and his wife, Ellen is still the only person she has told about her Alzheimer’s. Two and a half years ago, Ellen had a stroke while visiting her daughter in Nashville. She was in the hospital followed by rehab. Several months passed before she moved into assisted living in Nashville. Although we visit her almost monthly, it is not the same as having her in town. In addition, Ellen’s speech was affected by the stroke, and it is very difficult to understand what she is saying.

I should add that Kate has had three other close relationships since we have lived in Knoxville. One of those died quite a few years ago. Another, Ann Davis, moved out of state for a number of years. She and her husband now live in Nashville. We often stop to see them when we are there to visit Ellen. The third close friend moved to Arkansas following her marriage after the death of her previous husband with whom we were also close friends.

There is one other social connection that was important to Kate but is now broken. That’s PEO. She had been involved with them for more years than I remember, At one time she was their chapter’s President. She frequently hosted meetings in our home and was occasionally in charge of the program. She was never close friends with any individual members, but she enjoyed and respected the members and valued PEO’s mission. She was especially supportive of PEO’s grants and scholarship program for women to attend college. Over time Kate’s memory of the members began to fade. That was especially true since they only meet once a month. The result was that she no longer felt comfortable going to meetings. For a while, I encouraged her to go, and she agreed to do so. Eventually, I sensed that when she was with other members, the conversation didn’t involve her as much. She didn’t know who was talking or grasp what they were saying. She simply couldn’t keep up. One time when I reminded her of her next meeting, she told me she had resigned and wasn’t going anymore. I never pushed her after that. I spoke with one of the past president’s who had been sending me all communications since Kate did not read her email. I informed her that I thought it best if Kate resigned. She suggested that she simply go on inactive status. I agreed to that. We still pay her annual dues as well as making a contribution to their annual fund drive, but Kate is no longer involved.

This is a sad story. Kate, who had had several very strong social connections, now found herself without a close friend in Knoxville. I know that she is not the only person with Alzheimer’s who has faced this problem. It can be hard to avoid and requires some initiative and creativity. The good news is I have found ways to address her isolation. I’ll say more about that later.

Addendum To My Previous Post

Now the story gets funnier. After finishing my previous post, I told Kate I was going to the men’s room and would be right back. She said she was ready to go home anytime. That surprised me because she has never indicated a desire to leave Barnes & Noble. I’m not sure we have ever stayed less than an hour and a half sometimes two and a half hours.

When I returned from the men’s room and sat down at the table, Kate asked again where the bathroom was. I told her we should get our things together and I would show her. Then we would go home.

We arrived at home, I remembered it was time for her to take a Tylenol, one of the other things recommended by her doctor. She asked me, What now?” I reminded her that she had wanted to come home and that she could work on her iPad. She said she would like to do that and would come to the family room. I gave her the Tylenol and asked where her cup was. That was silly of me. Of course, she couldn’t remember. I know that. Why then did I ask? I told her it was probably in the car and stepped out the door to get it. As I brought it inside, she was getting another cup. At any rate she was going to take her Tylenol.

I went to get her iPad. When I returned to the laundry room, she wasn’t there. I looked around the rest of the house. She wasn’t anywhere. Then I thought she might have gone to the car. That is where she was waiting for me. I went out and reminded her that we had just gotten home and that she had said she wanted to work on her iPad in the family room. She said, “Oh” and got out of the car and came inside where she is doing just that. She is happy, and I have a moment to make this post. In another thirty minutes we will leave for dinner. Then we will be back home for what has become one of the nicest times of the day. We’ll turn on the TV. I’ll watch a little news. Then I will shower and watch a little of tonight’s Olympics before going to bed. Except for her grumpiness at the start of the day, Kate has been in a good humor. All in all, it will have been a good day in the Creighton house.

We’re on a different schedule today.

Kate slept unusually late this morning. I decided that given the flu, rest would be a good thing. I checked on her just after 11:30. She was still sleeping soundly. That gave me plenty of time to have my breakfast, wash, dry, and fold two loads of clothes, as well as checking the morning email and spending time on my blog.

In addition to rest, I know that she is supposed to get her Tamiflu approximately every 12 hours. That led me to wake her at noon. When I got to the bedroom, I saw that she was already up. I went back to the kitchen which serves as my office. I continued to work on another blog entry on social isolation that I will probably post on Monday while waiting for Kate to get ready.

Kate finally walked into the kitchen about 1:15 not knowing at all what time it was but ready to go. She was a little grumpy. In a cheerful tone of voice, I told her I was so glad to see her, and I wasn’t going to do anything to upset her day. She smiled. I gave her a hug, and she was fine. I had already decided to skip Panera and go straight to lunch at Bluefish. It was 2:00 when we sat down at a table. By this time I was already getting an impression that we were both making steady progress recovering from the flu. Except for having slept so long as well as several times she coughed, Kate seems back to normal. I also feel better but know that I still need another day or to before I am where she is now.

We left the restaurant at 3:05. I knew that Kate would not want to spend the rest of the afternoon at home; so I had brought our iPads and cups planning to go directly to Barnes & Noble. That is where we are now. Before settling down at my iPad, I had one of those experiences that every parent knows about but might not think of in connection with a person with dementia and her caregiver.

I selected a table for the two of us and gave Kate her iPad while I got her a passion fruit tea with lemonade. I returned to the table with her cup. Then I took out my iPad. Before I could start, she asked me where the bathroom was. It is located off the main area; so I don’t feel comfortable letting her go or return on her own. I closed my iPad and carried hers and mine as I led her to the restroom. I waited right outside and brought her back when she had finished.

This kind of shift from one thing to another is not a big deal, but it happens so often that it can be a problem for the caregiver. I should note that sometimes I can predict such things. In fact, this was one of those times. I had thought of asking her about going to the restroom at the restaurant. Then I thought I would wait until we arrived at Barnes & Noble. That plan failed when I forgot to do it. It’s another illustration that as a caregiver, I am frequently making these kinds of mistakes. There is just so much to remember.

Bizarre Case of Imagining Things

At lunch today, Kate asked me something about “a guy who wanted to make her naked.” I had no idea what she was talking about and said so. She looked frustrated with me and indicated I must have remembered. She went on to say that she had been in the restroom, and there was a man and a woman. The man wanted to disrobe her and walk her around the restaurant and parade her outside. She said she knew that I would not let that happen. I assured her that was the case.

A moment later, she asked me the name of our server. I told her it was Sandra. Then I said that reminded me of someone who was in her bridge club years ago. I could see that she didn’t recall and went on to tell her the names of each of the members and their spouses. She said, “Where was this?” I told her it was right here in Knoxville. I noted that two other members of the club as well as the two of us are the only remaining living members. She said, “Where was this? In North Carolina?” It was clear that she had little or no memory of the bridge club of which she had been a member for more than twenty years.
Then she asked me our daughter, Jesse’s, middle name. I told her. She asked what her last name is. She followed that by asking her husband’s name. After I mentioned the twins, she asked their names. I said something about having a son in Texas, and she asked his name.

These are not names that are lost forever. They come and go in her memory, but they are signs that the names will be forgotten sometime in the future. When I encounter moments like these, I am amazed that she functions as well as she does.