Posted on

After Dinner Last Night

Kate had gone to brush her teeth after returning home from dinner last night. I took the clothes out of the dryer. In a minute, I heard her call to me. When I reached her, she was in the bathroom and said, “I like this place where we’re staying. It’s so spacious and attractive.” I said, “Yes, it is.” I didn’t say anything about its being our home.

A little bit later she took a seat in the family room. She looked out to the back yard and said, “This is a nice place. Look at the trees. They’re so beautiful.” I agreed, of course. Once again, I didn’t say anything to suggest that she was confused.

Before going to bed, Kate went to a bathroom off the guest room next to our bedroom. She seemed to take an unusually long time. Then I heard her call my name. When I answered, she said, “Where are you?” I said, “In our bedroom.” She said something that made me realize that she didn’t know where that was.  I said, “I’m right here.” Then I walked to the hallway where she was standing. It wasn’t until she saw me that she knew where to go. I wonder how long she had been looking for me.

Posted on

Increasing Difficulty Dressing

I checked on Kate at 8:45 this morning. She had just gotten up. In her arms she had gathered the clothes I put out for her. She was headed to take a shower. I asked if she would like to use the one in our bathroom. She said it didn’t matter, so I suggested she use ours. I got everything ready for her.

A little later I checked on her again. She had showered and was starting to get dressed. I looked in the bathroom and discovered she had used the two towels I put out for her. In addition, however, she had gotten into two drawers of other towels. She had tossed at least three different hand towels on the floor, only one of which appeared to have been used. In addition, she had pulled out another bath mat that was on the floor along with several wash cloths. She continued to dress while I took care of the bathroom.

After another 45 minutes, I checked, and she was still not dressed. She had misplaced several things and was searching for them. This is becoming common. Although I have each item laid out so that she can see each one, she seems to pick up one thing and put it someplace else. The items are usually thrown someplace so that it they can be hard to find. That is particular hard when something like black socks are thrown on our dark blue rug. It can be difficult to find them.

We are in one of those in between stages. She is already accepting my help in picking out her clothes, but she still likes to dress herself. I can understand that. I think I would be the same way. I am trying to let her do just that but checking on her periodically so that I can find the things she has misplaced. I suspect that is a major reason it takes her so long to dress. I know that some of that time is trying to identify the front from the back of her top and pants and then to put them on correctly, but some of it has to be trying to locate the things I had put out for her. We are, of course, moving toward the time that I will play a major role in her dressing. At the rate we are going, that won’t be long. In the meantime, we’ll stick with what we are doing now. I want her to retain as much independence as she can.

Posted on

An Interesting Support Group for People with Dementia

A few weeks ago, I posted a conversation that I had with Kate’s brother, Ken. In that conversation, we focused on his diagnosis of Alzheimer’s at age 70, the same age at which Kate was diagnosed. Unlike Kate, he has chosen to be more public. For example, he told his children right away. Kate has told only one person, her best friend Ellen.

Another example of being more public is that Ken joined an Early Memory Loss support group rather quickly. That was in 2014, and he is still participating. Originally, Kate didn’t want to be in a support group. A few years later, she changed her mind. I told her I would look for one. I found that there are many groups for caregivers but not for people with dementia/Alzheimer’s. I even contacted the national office of the Alzheimer’s Association. They told me they had experimented with them, but they had never had much success.

Thus, when Ken mentioned his support group, I was eager to learn more. Last week we had a conversation about it. I’d like to share it with you.

RICHARD: Ken, you have previously told me about your early memory loss support group. I’m preparing a new blog post and wanted to learn a little more about it. How did you find out about it? Did you inquire with your local Alzheimer’s Association or some other organization?

KEN: Well, it turned out to be pretty easy. We learned about it from my neurologist. He encouraged us to call them to gather information and to arrange a visit to their different programs.

RICHARD: Is this group part of a state-supported program. Do you know of similar groups in other places?

KEN: No, it is a local non-profit agency program that depends on both professionals and volunteers who are responsible for different parts of our regular agenda. I’m not aware of other groups here, but I have heard there are some in Austin as well as other major cities.

RICHARD: Tell me a little more about your group and how it works.

KEN: The program has two groups. One is for those who are in the early stages of the disease. That’s the one I’m in. The other is for those in the more advanced stages. We meet in a local church every Friday from 9:30 to 2:30. That may seem like a long time, but we have a regular agenda that we follow. Each part is designed to address the various needs of people with dementia.

RICHARD: Who leads the group?

KEN: We have several people who are responsible for different parts of our agenda. Some are volunteers from the community. There is a paid director who is in charge of the program and usually a social worker in charge of the individual group meetings.

RICHARD: I’m curious to learn more about what you do over five hours.

KEN: I’d be glad to fill you in on that. The first two hours we deal with current events. We have a couple of volunteers, one of whom is a radio talk show host, who come in with a collection of news articles they think would be of interest. They cover a variety of topics that have been in the news over the past couple of weeks. They are not intended to be a summary of the current news, but things of personal interest that are intended to generate discussion. They are distributed in print form to everyone in the group. We take turns reading to the rest of the group. We often have a lot of discussion as well. Of course, that varies with the topic. When we are finished with one article, we go to the next one.

I’ve especially enjoyed this part of the program. The topics are interesting and the people in the group have a variety of opinions they are glad to share.

Then we have thirty minutes of exercise. It consists of a series of chair exercises that all of us are able to do. It involves a lot of stretching and bending. It just keeps us limber.

At noon, we have a working lunch that lasts for two hours. This is more like what you might expect in a support group. The leader generally opens the meeting by asking if there is anything in particular that anyone would like to talk about. Sometimes there is. Sometimes there isn’t. In either case, the leader always has a topic for us. We talk about a lot of things that are of general interest to people with dementia.

The last hour of the day we focus on the arts, especially music and art, but we also include special topics of general interest. This portion of the program is led by someone who has skills and knowledge on a particular topic. For example, we had an interesting program by a woman who was knowledgeable about the history of butlers in England. That is something we knew little about and made for an interesting presentation.

RICHARD: I want to thank you for taking time to help me learn a little about your group. I can easily see why you have enjoyed it. I only wish there were more programs like it.

KEN: It’s been a pleasure, Richard. I’ll look forward to talking with you again.

Posted on

Last Night and This Morning

I was glad to see Kate get to bed a little earlier last night (9:00). That is something I am trying to encourage as a way of getting her to wake up earlier in the morning. I joined her about 45 minutes later. The other day, she told me the Russian choral music I like was beautiful. That and the fact that she was still awake led me to play that album as we went to sleep. It is very relaxing. I often play it while I meditate. I don’t know how long it was before we were asleep. I know that we only heard a portion of the album and that Kate mentioned several times how beautiful the music was.

This morning Kate gently opened my closet door where I was getting dressed. She was a bit groggy as she usually is when she gets up. She was looking for the bathroom. This is the first time I have been aware of her not remembering where the bathroom is. Of course, I am usually in the kitchen when she gets out of bed, so I wouldn’t know. Anyway, she was very confused. She was still dressed in her night gown but carrying the top she had worn yesterday. She said something about getting dressed. I told her it was still early (6:30) and that she might want to go back to bed after using the toilet.

I wondered how long she would sleep. It wasn’t long until I knew. She was up about 8:30. She had already taken her shower when I asked if I could help her. She told me I could get her something to wear. I put her clothes on the bed and showed her where they were and left her to get dressed. She was ready to go about 9:45 wearing exactly what I had picked out except for the shoes and socks. I considered that a small victory.

She has been in an unusually good humor this morning. As we drove away from the house, she said, “You’re a good guy. And you’re a good husband.” The she added, “What is your name?” When I told her, she said, “I knew that.” Then she asked my full name. I said, “Richard Lee Creighton.” She started to repeat it. Then she asked me to tell her again. When we arrived at Panera a few minutes later, she said, “Richard Lee Creighton.” She was beaming. We’re off to a good start.

Posted on

One of Those Sad Moments

At lunch today, I said something to Kate about her mother. Then she said something that suggested that her mother was still alive. I said, “Your mother passed away.” She looked shocked, and I said, “Yes, she died in 2005, and you can feel good about the way you took care of her the last years of her life.” Then I said, “You were a very faithful daughter.” She said, “I’m her daughter?” She looked very sad, and her eyes filled with tears. I gave her the whole story of how she had made arrangements for her mother to move to Knoxville to live with us. I talked about a conversation we had one night that led to her contacting a friend about an agency that had provided in-home care for her husband who had recently died. I also told her that the caregiver who was in the house to greet her when her mother arrived was holding one hand when her mother died and that Kate and I were holding her mother’s other hand. She seemed to be comforted by this.

This was the first time she has ever given any sign of not remembering her mother’s death, so it caught me off guard. It raises the question I have read others talking about. Should I have told her the truth? In this case, I didn’t have time to consider the best way to respond. I believe I did the right thing. I suspect that she will forget again sometime, but I expect that she will remember most of the time, at least for a while. If she were further along, I would probably let the subject slide by without saying anything at all.

Regardless of what was or wasn’t right about the way I handled the situation, it was sad to see the memory of her mother’s death slipping away as well as the sadness she experienced when I told her.

Posted on

Kate and Music

Yesterday’s musical experience with Ellen had gone so well that after we got home last night, I turned on our TV to YouTube. I did a quick search of several other types of music videos we might enjoy with her or just for ourselves. I noticed a performance of Dvorak’s “Symphony from the New World” by the New York Philharmonic. I’ve loved it since I was introduced to it in our high school band and orchestra. I turned it on while Kate was working jigsaw puzzles on her iPad. In a few minutes, I noticed that she had put the iPad down and was absorbed with the music. It was 43 minutes long, and she watched the entire performance and loved it.

I’ve often mentioned that music has played an important role in our marriage starting with our first date. I don’t believe I have ever said that Kate’s musical tastes have always been narrower than my own. She has always enjoyed some classical music, but it has been limited to a few familiar works. We have had season tickets to our local symphony since the late 1980s. She has always attended because I was drawn to the music. She was not. In recent years, she has been even less enthusiastic. I think we attended only one concert this past year. The primary reason is that she is often tired after dinner. Except for our music nights at Casa Bella that start at 6:00, we haven’t scheduled anything at night in a long time.

Given that she hasn’t enjoyed classical music as much as I do, I’ve been somewhat surprised and pleased that she now seems to enjoy a much broader range of music like the Dvorak symphony she watched/listened to last night. Even more surprising is her appreciation of some of my favorite sacred choral music. She has never liked what she refers to as my “monk” music. Just yesterday, I played an album of sacred music by a Russian choral group and asked how she liked it. She said, “It’s beautiful.” I couldn’t believe it.

I’ve begun to wonder why the change. Could it be that its because she has heard me play so much classical music over the years? That would be a reasonable guess and, perhaps, the correct answer. On the other hand, could it have something to do with her Alzheimer’s. Maybe she has become more dependent on music as she has lost her ability to engage in other types of pleasure like working in the yard or working on photo albums on her computer.

I don’t think I will ever know for sure, but I am inclined to think that our binging on music since her diagnosis has led to a greater appreciation of a broader range of musical genres. We’ve been attending opera night at Casa Bella for most of the time since her diagnosis. The same is true for attendance at both the Live in HD at the Met productions and live opera performances as well. In addition, as part of my own therapy, I play music virtually the entire time I am at home. Thus, she has been exposed to music more than ever before. To me, the “why” is not so important. It’s just something I wonder about. The best thing is that we are enjoying more music together than every before.

I should also add that she doesn’t like all music. She frequently comments about the music we hear in restaurants. She tends to prefer softer more melodic music. That includes a lot of older songs and ballads and songs from popular musicals. I am sensitive to these preferences in my own musical selections. It seems to work for both of us.

Posted on

Yesterday was a full but good day.

A lot happened yesterday, and I know I won’t be able to capture all of the relevant things I would like. That’s probably a good thing. I’ve always admired people who seem to be able to recall the details of their experiences during a day. I’ve never been particular good at that, but I’ll try.

I need to back up to Sunday. That afternoon Kate took a two-hour nap. I finally woke her up and suggested we go to Barnes & Noble. I was concerned that she might not be able to get to sleep that night. It turned out that I was right. She was in a talkative mood at bedtime. I don’t know when she got to sleep. I know she was awake about 11:30. That concerned me because I knew we planned to drive to Nashville yesterday morning to have lunch with our friends Ann and Jeff Davis before paying a visit to Kate’s very close friend, Ellen, who is now in a memory care facility.

Kate surprised me. I knew that she was awake when I got up at 6:00, but I expected that she would go right back to sleep, and I would have to wake her to get ready. Instead, I heard her getting ready about 7:30. This was another time that I had gotten our bathroom ready for her shower only to find that she had gotten up earlier and showered in another bathroom.

She had already picked out the pants she wanted to wear. I went to her closet and picked out three tops and let her choose the one she liked best. I also put out her shoes and socks. When she came out ready to go, she was wearing a golf shirt that must have been mine by the size of it. It fit her like a tunic and had TCU emblazoned on the shirt pocket. She was also wearing shoes and socks that were not the ones I had picked out and didn’t match as well. I didn’t say anything about the shirt, but I did bring her the shoes and socks. She didn’t complain at all and simply changed them.

Before leaving, I mentioned that we were going to have lunch with the Davises. She frowned and said, “You’ll have to tell me something about our children that I can tell them.” I mentioned a few things. We both realized this wasn’t going to work. She said, “You’ll just have to do the talking.” I should emphasize that she wasn’t upset about visiting with the Davises; it was her own insecurity about her memory. This is another good illustration of how long into this journey she has been able to recognize her problem and to be insecure about it. She exhibited a similar reaction after our visit with Ellen.

As it turned out, the conversation with the Davises went very smoothly. A lot had happened since our last visit, so Kate didn’t get put on the spot to say anything about our children. They asked about our children, and I answered for her. It was a nice visit.

From there we went to Ellen’s. We found that she had declined noticeably since we saw her three weeks ago. We could understand very little of what she said. We also found she is beginning to exhibit a few of the symptoms that accompany dementia. One of those occurred shortly after we arrived. I had taken a DVD of Les Miserables. I had intended to play a portion of it later in our visit, but communication was so difficult that I put it on not long after got there. Initially, Ellen was quite interested. She was even a little disturbed when some of the staff were talking loudly and made it more difficult for us to hear. Then she turned around in her wheel chair and started to leave the room. I asked where she was going. Through a few words that I could pick up and her gestures, including touching her hair, I discovered that she thought she had an appointment with the hair dresser. I checked and found that the hair dresser doesn’t come until Wednesday. Then Ellen wanted us to go back to her room where we spent almost the entire visit.

Once we reached her room, I got out my iPad and opened the YouTube app, and we had an hour-long “concert” of music performed by the Mormon Tabernacle Choir. That was a winner. She and Kate became engrossed in the music. We only stopped when it was near the time for us to leave, and Ellen wanted to use the bathroom. I called one of the attendants to help her and closed up the iPad.

As we walked to our car, Kate said, “I’m so sad.” She was disturbed to see Ellen had changed. She also seemed to be concerned that the staff had no awareness that Ellen was a musician (singer, pianist, choir director, and TV producer). We had mentioned this to someone the last time we were there, but, of course, the message doesn’t get around to everyone. Then Kate said, “I’m so glad I have you to take care of me.” I don’t know exactly what was going on in her mind. It sounded like she was thinking about herself and happy that she was at home under my care. In the car, she expressed her appreciation to me. She said, “I couldn’t get along without you. Well, I could get along, but it wouldn’t be the same.” She paused and said admittingly, “I really couldn’t get along without you.” She displays far more awareness of her situation and other people than I would have expected at this stage.

We capped off our day by eating at the same place we had eaten the last time we visited Ellen. It’s a bit fancier and pricier than what we are accustomed to but made for another special time together. I had a delicious sangria followed by an Ahi Tuna entrée. Kate had grilled trout that was quite good. She said it as “OK,” but she ate all of it along with the creamed spinach that came with it. We topped it off with a calorie-laden bread pudding.

The trip home was uneventful. That’s a good thing. It was another good day for us.

Posted on

Connecting with Friends, Discovering More Memory Problems

Kate and I are at that age when we take greater interest in connecting with old friends. We’ve done some of that in the past few weeks. The first is a long-time friend of Kate’s, Meg Wright, who lives in Dallas. She and Kate grew up together in Fort Worth, and Meg was a bridesmaid in our wedding. We don’t see her often, but we have enjoyed getting together with her when we are in Dallas. The last time was almost a year ago. She called a few weeks ago to speak with Kate. They had a nice chat. After they were finished, I sent her an email letting her know how much Kate had appreciated the call. When she replied, she indicated that she may be in the early stages of dementia herself. She said they were experimenting with some medications and was going to check in with the doctor soon. I have followed up with her in a couple of emails including this past week. Nothing is definite yet, but the signs point to dementia. I would have wanted to stay in touch regardless, but now I feel it is especially important to be someone with an encouraging word for her.

On Friday, I placed a call to Reggie Stone who lives in Raleigh. He and I became close friends in Madison where we were both PhD students in sociology. We both began our careers as professors and ended up in the business world. We were very close and had remained in touch for quite a few years. Somehow in the past ten years, we have had very little contact. I decided to end that with my phone call. They were not available at the time, but his wife and I connected via email and set up a phone call yesterday afternoon. Reggie and I talked for almost an hour. It was like old times, at least for me. I hope the same for him.

In our conversation, I learned about a second heart attack and their move to a continuing care facility. He and his wife, Dot, are still active and enjoying themselves, but it seems their lives are also changing. Reggie told me that he no longer drives nor works on a computer. When I asked him a question about something that had happened in the past, he said his memory was not as good as it used to be. I followed up with an email to Dot who confirmed that he has not yet gotten a diagnosis but is encountering memory issues.

In an earlier post I mentioned last week’s meeting with a church friend whose daughter may have early onset dementia. The problem they are having now is getting a clear diagnosis. All of these recent contacts with people I know illustrate that dementia is a more common experience than we often realize. It also encourages me to play a greater role in doing what I can to encourage and help others who are currently living with Alzheimer’s. At this point, my primary role is to care for Kate. I hope that this blog may benefit some people. In the years ahead I may be able to do more to satisfy my desire to help other caregivers and people with dementia.

Posted on

Confusion at Dinner

Tonight at dinner Kate said, “Where are we staying tonight?” I told her we were staying in our very own home that wasn’t far from the restaurant. I could tell by the question that she must have thought we were out of town. A little later, I asked our sitter for something. After that, she said, “I like traveling with you. Do you know why?” I said, “No, why?” She said, “Because your nice . . .” She couldn’t think of how to say what she wanted. I said, “Do you mean nice to the people who serve us?” She said, “Yes.” Once again, it sounded like she thought we were out of town. As we drove away from the restaurant, she said, “Exactly (with emphasis on that word) where are we now?” I told her we were in Knoxville and going to our home that was only a few minutes away. She seemed to accept that, but before we got home she said something else that made me think she was thinking we were not in Knoxville. I just don’t remember what it was.

This is not an unusual occurrence. As I reflected on it, it didn’t seem so strange at all. If she can’t remember where she is, every place can seem like we are some other place than home. For some reason that had never struck me before. This becomes just another example of how important one’s memory is.

Earlier we had been talking about our parents. I commented that I wished we had asked her mother and father to tell us what their parents were like as they were growing up. At our younger ages, we never thought of asking that. Now all we know about them is biographical information – where and when they were born, when they married and died, etc. We really don’t know a thing about their personalities and what they were like as parents. At some point, I mentioned something about her mother’s having married her father. She looked startled. She said, “My mother married my father?” I told her they were married in 1936 and asked, “Are you surprised?” She definitely was.

We had a very pleasant meal and are enjoying a little music and relaxation before adjourning to the bedroom to watch a portion of Sound of Music. Before we sat down, she was looking for her iPad. I knew it had been on the floorboard of the car on the driver’s side. Even though I was sure that I had come in with it, I went out to check. It wasn’t there. That confirmed that it must be in the house. I took a quick look around and didn’t find it. I told her I would use the “Find My iPhone” app to locate it. It frequently comes in handy. I got my iPad and walked from the kitchen into the family room. Kate was just walking into the family room from one of the bedrooms. I was focusing on the app and pressed the button to sound the missing iPad. It sounded immediately. It was in Kate’s arms. She had obviously forgotten that it was lost and I was trying to locate it.

Even with the confusion, we are getting along at the moment as if none of this confusion had occurred. It’s just an ordinary day.

Posted on

Kate and Humor

Although Kate enjoys humor, she’s never been a kidder. I grew up with a dad who lived his whole life as a kidder. The week before his 100th birthday and two weeks before he died, a young staff member at his nursing facility asked what advice he had for someone who wanted to live as long as he had. He answered, “Don’t die.” He was a light-hearted guy who saw humor in just about everything. He was even a “cut-up” in the emergency room where we made any number of visits. I tend to be a more moderate version of him. That may be having an impact on Kate right now. I find that she teases me a lot as her Alzheimer’s progresses. Not being a kidder by nature, it often fails to come across as humor though I recognize it as such. I’ve had a few examples of that already today.

Out of the blue at lunch, she said, “Those are the ugliest glasses I have ever seen.” That’s the first time I recall her saying anything about my glasses. Usually, she comments about my nose. That has been something of a family joke. Dad had a moderately bulbous nose that seemed to be more pronounced as he got older. I inherited his nose and have been kidded about that before.

Kate also frequently says, “I’m glad I married you even though you’re not handsome.” As we were driving home from lunch, she said, “I think husbands should be handsome, and wives should be beautiful.” Then she added, “I compromised a little in your case.”

I tend to be careful about running a red light and often stop the moment the caution light appears. Kate has always thought I overdo that. Today, I went through a caution light when I could have easily stopped. I said, “I should have stopped. I could have.” She said, “You shouldn’t worry about it. You’re a good guy.” Then she said, “Who are you?” She wasn’t kidding this time. I told her, and she said, “Who am I?”

That leads to something else she kids me about, my last name – Creighton. She likes her maiden name (Franklin) better. She often expresses this preference when I tell her my name. She passed up that opportunity today. In fact, a few minutes later, she said, “I think it’s a good thing that women take their husband’s names.” I asked her why. That put her on the spot. She didn’t say anything for a moment or two. I could tell she was thinking. Then she gave me an explanation that seemed not to make any sense at all. I said, “So you don’t think it would have been good for me to take your name?” It became clear that I was going too far. She said, “Let’s not talk about this right now. This is getting silly.”

We’re back home now, and she is resting on the sofa across from me in the family room. I have a Chris Botti album on the sound system. It’s a beautiful day though warmer than I would like. It looks like we’ll have a peaceful afternoon.