Sometimes the best moments are in the evening.

During the past few years, the evening has been our most consistently good time of the day. I say that in spite of the two recent anxiety attacks Kate has experienced. Mornings are a little different. Kate normally needs some time to fully wake up. I think that is one reason going to Panera has worked out well for her. She is able to eat her muffin leisurely while working on her iPad. She doesn’t have to enter into conversation except for the greeting of people we see there. Those are short-term encounters that give her a lift. That gives her a good hour or two to wake up Then she is ready for lunch. When she gets up unusually early, she sometimes wants to come back to the house to nap a little more. That used to happen frequently, not so often now.

I don’t know exactly why the time after dinner goes so well. I do know that I am more relaxed. I believe that is because I don’t feel as strong a need to entertain her. I think of this as a cooling down time. I’ve wondered if Kate doesn’t feel the same way. My recent purchase of DVDs of musicals and operas has certainly given us a regular activity for that time. When we don’t watch one of those, we spend an hour or so in the family room. I always put on some relaxing music that Kate and I both like.

Last night, I had something new for her. When we visited Kate’s brother and his wife in May, they gave us three VHS cassettes with home movies and videos for me to have converted to DVDs. They arrived yesterday. We watched one of them after coming home from our Monday night Mexican dinner.

This particular one consisted of highlights of a Franklin family reunion in 1982. I didn’t recall having seen this video before. I know that Kate didn’t remember. We both enjoyed seeing her parents as well as her aunts and cousins. As you would expect after 36 years, many of them have passed on. The children are grown up with families. It was a special treat for Kate and for me. When we finished, I noticed that she was still moved by what she had seen. I walked over to her chair, and we reminisced about her family and the good times we had with them. It was a beautiful way to spend the evening. What is best is that we have two others, each of which is a good bit longer. That should take care of us for several nights.

Bedtime Conversation

Kate got into bed to work a few more puzzles before going to sleep.

KATE: “I like it here.”

RICHARD: “I do too.”

Five Minutes Later

KATE: “What’s the name of this hotel?”

RICHARD: “This is our house.”

KATE: “You could have fooled me.”

Another Five Minutes Later

KATE: “I just like your being here even if we aren’t talking.”

RICHARD: “Me, too. It would be lonely without you.”

KATE: “Do you know my name?”

RICHARD: “Yes. Do you?”

KATE: “Kate. What is your name?”

RICHARD: “Richard.”

KATE: “Oh, I knew that. I just couldn’t think of it.”

Memory is fading away.

As you have probably detected from my recent posts, Kate’s world is changing. Its getting smaller and smaller. As it does, mine changes as well. I am taking charge of things that just a short time ago, she was doing for herself.
This morning I had an example. She walked into the kitchen where I was working on my computer. She was dressed for the day. I got up to greet her. She said, “Don’t get too close. I haven’t brushed my teeth.” I said, “Well, you could do that now while I get your pills ready for you.” She said, “Where can I find the toothpaste?” I told her there should be toothpaste and toothbrushes in each of the bathrooms. Then I said, “Let’s go to our bathroom, and I’ll show you.” This was a first. She has been brushing her teeth in all three of the bathrooms for years. This goes along with her forgetting how to get ice out of the dispenser of the refrigerator or locating the cabinet that keeps her cups that she takes with her when we go to places like Panera.

When we got to the bathroom, she asked me to look at her top to see if it was on backwards. It was, and she started to take it off. I left the room. A moment later, she called for me. When I got there, she was tangled up in her top. She said, “Can you help me?” I took the top and identified the label in the back and then held it up for her to put arms into the sleeves. She took over from there. This was another first. She does have one long night gown that I have had to help her with several times, but this was an ordinary top similar to all the others she wears. Getting into her night clothes is beginning to be a challenge as well. It is not uncommon for her to start to put on her gown and then put on the clothes she was just wearing.

She is also being more careful to ask for my hand when going up or down curbs and stairs. She has tried to retain her independence with respect to that for a long time. She used to be offended when I tried to help her.

Yesterday she asked me more questions than usual. They were almost all the same ones I hear regularly. The difference was that they were repeated so often during the day. They mostly related to the names of her parents, my parents, and our children. Last night she again picked up the photobook her brother Ken had given her in May. She enjoyed it as much as the first time she had looked at it.

Although she doesn’t express any concern or frustration with these changes, the fact that she continues to ask and to look at her photobooks seems like a serious effort to retain some control of her life. I told her the other day that I would be happy to write down the names of our parents, children, and grandchildren as well as a few things like how long we have been married, places we have lived, and a few of the special things we have done during our marriage. She seemed to like the idea, and I have started with a few of the basics.

When I see changes like these, I always wonder about the future. I always have potential plans for things that may or may not come to pass. One of those has been another possible trip to Chautauqua. Last year I was convinced that going this year would be out of the question. More recently, I have thought that we might be able to go for just a few days rather than staying a full week. I have just about decided to stick with my original plan and not go.

This is our year to have Thanksgiving with Kevin and his family in Lubbock and Christmas with Jesse and her family in Memphis. It is too early to make a decision on either one of these. Right now I intend to make both trips, but I will have to see how Kate is doing as we get closer to the holiday season.

I think we should be able to continue day trips to Nashville for the foreseeable future. I might even consider an overnight trip to either Asheville. At the moment, I believe it is best to continue doing what we have done in the past – take it one day at a time.

More Confusion, But a Good Day

Yesterday we went to Nashville to visit our friend, Ellen, who had a stroke three years ago next month. She had lived in Knoxville until that time. She had the stroke while visiting her daughter in Nashville and has never returned home. We try to visit about once a month. She is now living in a memory care facility. This is the fifth place she has lived since we started visiting her.

Kate got up a little later than I had wanted, so we ate lunch before leaving. When I hadn’t heard any signs that she was up, I went back to the bedroom to check on her. I discovered that she was up and taking a shower. I glanced in the bathroom door to see a mound of clothes on the floor in front of the shower. She often takes her clothes for the day into the bathroom while she showers. What was unusual this time was that she had a variety of clothes, mostly winter clothes. They also included four or five tops and a couple of pants. I came back to the kitchen. When I went back fifteen minutes later, she was sitting on the bed. The clothes that were previously on the floor of the bathroom were now on the bed. It turned out that she had everything but her underwear. I asked if she would like me to get them. She did. When I returned, she said, “Thank you, whatever your name is.” I asked if she would like me to tell her my name. She said yes, and I did. On the way to lunch, she asked my name. I told her and then said, “What is your name?” She took a moment to think and then answered correctly.

She was very quiet on the way to see Ellen. When we arrived, she said, “Does this place have a name?” I told her we were in Nashville and gave her the name of the facility. This way of asking for a name is becoming more frequent now. Mostly, she says, “Where are we?” She has a similar expression when we are at restaurants. She says, “Does this place serve food?” This is a sign that she is ready to eat and thinks the restaurant is taking too long. She has no concept of time, so usually, it hasn’t been long since we ordered that she asks the question. Sometimes it occurs right after the server has walked away after taking our order.

Our visit with Ellen was one of the best we have had. I wish I could say that is because Ellen has improved. That wasn’t the case. In fact, her speech seemed to be worse than the last time we visited a month ago. At the time of our first couple of visits almost three years ago it was very difficult to understand her at all. Over the next year, she improved a good bit, but I would say we were still unable to understand about a fourth of what she said. In February of this year, she had a couple of seizures. They affected her mobility and her speech. Yesterday we could understand very little of what she said.

We got off to a good start. When we walked into her room, Ellen was lying down on her bed. Although I know her daughter had told her we were coming, she had forgotten. She was quite surprised to see us and very emotional about our being there. I don’t know that I have mentioned that Ellen is a very outgoing, take charge kind of person who had many friends in Knoxville. Because so many of her friends are about her age and travel to Nashville is a bit much for many of them, she has had practically no visits from them. We know of only one other couple from Knoxville who has visited her. In addition, most of the others in her memory care unit are unable to converse much. She must be starved for conversation with friends.

It was interesting to watch Kate’s interaction with Ellen. She took much more initiative in the conversation than she has done previously. She brought up the fact that the two of them used to have lunch together every Monday while I was at Rotary. It is interesting that this memory has not disappeared. She remembers other things about our relationship with Ellen and her husband, Gordon, but only when I bring them up. The Monday lunch is more firmly embedded in her memory. Something else was different about Kate yesterday. There were quite a few times when Ellen struggled getting her words out. In almost every instance, Kate tried to encourage her. She said, “Just relax. Take your time. You’ll get it.”

After we had been there a good while, I asked Ellen if the staff played much music for the residents. She said they didn’t. I suspect she just doesn’t remember. Ellen had been a choir director for almost 40 years. She was also a singer and played the piano. We began to talk about music. I mentioned that I remembered her son’s singing “Danny Boy” at a piano recital when our children were taking lessons. Then I remembered that I had a recording of “Danny Boy” on my phone. I played it for her. All three of us enjoyed it. That led to my playing several other pieces. It was a nice interlude in our visit. The music was beautiful. Conversation for Ellen was challenging. We let the music speak for us. At one point, Ellen reached her hand out to Kate who clutched it. I could see tears in their eyes. It was a touching moment to watch and be a part of.

Not long after that one of the staff came in to get Ellen up for dinner. I asked if she knew Ellen was a musician. She didn’t know a thing about her background in music. When I told her she was surprised. She said she was glad to know and would pass that along to the activities director so that she could take advantage of that. I wonder how many people in places like this are not fully appreciated because the people working there have no knowledge of who they were before their memory problems. I suspect this is true for most.

We left Ellen’s and went directly to dinner before driving back home. We stopped at McCormick and Schmick’s. As we waited for our meal, Kate looked across at me, put her hands around her mouth like a megaphone, and mouthed the words “I love you.” I told her I love her too. Then she said, “Tell me your name.”

The ride home was unusual. Normally, we drive this distance with very few words. I usually play music that I know Kate will enjoy. Last night, she was talkative. In fact, we talked most of the way back home. It got its start as we were leaving the restaurant. Our daughter, Jesse, called to check in. She updated us on her family’s recent trip to Florida. Kate was happy to hear from her and to know they had a good trip with the family. That must have prompted her to think about the good things in our lives. She talked about our marriage and how fortunate we are to have found each other. She talked about both of our children. I reminded her that our son, Kevin, and his family have just returned from an exciting trip to the Grand Canyon, Bryce Canyon, and Zion National Park. It makes both of us happy to see our children enjoying life and moments like these with their children.

As we neared our home, Kate said she was tired. Then she mentioned she wanted “to do some work” before going to bed. She quickly added, “You know the kind of work I mean.” I did know, working on jigsaw puzzles on her iPad. We had had another good day.

How well would our strategy work for other couples living with Alzheimer’s?

Yesterday as I reflected life since Kate’s diagnosis, I conveyed how fortunate we have been. I also indicated how important our approach to the disease has been. I didn’t have a good understanding of how well it would work. We simply wanted to enjoy whatever time we had left. We have done that and more. You might think then that I would recommend that others do the same things we have done. In the most general way, I would. The specifics, however, might be very different from what we have done. Let me explain.

I started this journal without any ideas of what our journey would be like or any belief that our approach would make any difference. I was like everyone else when faced with a diagnosis of dementia. It was the biggest crisis of our lives, but we were determined to make the most of it. During those early days, we considered the things we liked to do. Since I am the planner of the family, I simply began to arrange for us to do them. I had no grander plan than that.

I am very careful about giving advice. There are too many differences from one person to another or one couple to another. I would need to know a good bit about the people and their situations before advising them as to what they should do.

Kate and I have been blessed with a number of things that make our experience more positive than that faced by so many others. Virtually all of them are things for which we cannot claim any (or at least full) credit.

1. Kate’s Alzheimer’s has not been of the type that produces some of the most troublesome symptoms of the disease. I know caregivers who have had to deal with severe anger and other difficult behaviors. Kate has been more irritable than before Alzheimer’s, but it has been minor and occurred mainly in the earlier stages.

2. Neither of us has had other health issues to contend with. As we approach 80, we are beginning to feel the effects of arthritis and cataracts and have little aches and pains we didn’t experience when we were younger but nothing of any great consequence right now.

3. I was at a point in my career that allowed me to retire so that I could spend more time with her. I feel for those who are earlier in their careers and must maintain their employment while devoting themselves to caregiving.

4. We share so many common interests that it is no sacrifice for me to “live in her world.” I am thinking of things like our love for music, theater, and travel. Each of these taps into our intuitive rather than rational abilities. Music and theater continue to play a major role in our lives. Our major traveling ended in 2015 when took a trip to Switzerland. Prior to that, but after her diagnosis, we traveled to Africa, New Zealand, Machu Picchu and the Galapagos Islands. We still make day trips to visit friends. In fact, we are leaving shortly for Nashville where we are visiting Kate best friend, Ellen.

5. Although I have a lot of OCD tendencies, neither one of us is the kind of person who likes to control the other. That’s not a little thing. Over the course of our marriage, each of us has allowed the other freedom to be who we are. As her caregiver, I have to change my ways a bit. She doesn’t try to control my behavior now, but I am controlled by my responsibility to her. I live her way as much as I can. Increasingly, she accepts my help as she becomes more dependent.

6. We are both conflict avoiders. We are fortunate that we have been able to work out the many issues that arose before and after diagnosis.

7. Despite my compulsiveness, I am a patient person. That has helped me a lot more after diagnosis.

8. Finally, we have sufficient financial resources to manage the extra expenses associated with eating out, traveling, and the musical and theatrical events we attend.

As I said at the outset, people’s situations are different. I am not ready to say other couples should do exactly what we did. That said, I believe almost any couple could benefit by practicing the point of the Judy Cornish’s The Dementia Handbook. She suggests that caregiving is easier is we focus on what our loved ones with dementia are able to do rather than what they are not able to do. That is, not devoting so much attention to the abilities that they lose (their rational abilities), but on the their intuitive abilities (the ones that derive from our five senses). They retain the latter a long time after diagnosis. The really good news is that most of the things all of us do for pleasure depend on our intuitive abilities. If you are a caregiver, consider what your loved one likes to do and go from there.

I don’t want you to believe that everyone’s journey would go as smoothly as ours. Many things have to fall in place for that to happen. They did for us, and they have for others. If you are looking for another couple’s success, I recommend Mike and Me by Rosales Peel.

Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

The Rest of the Story

After leaving Panera yesterday afternoon, we went directly to Casa Bella for their monthly night of jazz. It was a little different last night. The couple with whom we normally sit were unable to make it. We joined another couple who only come for the evening of jazz and not opera or Broadway. We have sat with them several times but are not as well-acquainted with them. They are a very interesting couple, and both are talkative. That works fine for me, but I’m afraid Kate was left out of most of the conversation. On the positive side, I know that she enjoyed the music.

The best part of the day turned out to be after we got home. Before we left the house yesterday afternoon, she asked me (in sign language, of course) if she should take two of her photobooks with us. I suggested that she leave them home, that she wouldn’t need them at either Panera or Casa Bella. When we got home, she picked them up from the coffee table in our family room and took them back to our bedroom. While I took a shower and got ready for bed, she started going through the photobook her brother Ken had made for her. She took a lot of time carefully looking at the pictures on each page. Frequently, she would call my attention to one she particularly liked. I was encouraged to hear her mention the names of her various family members in the photos. I like knowing that she hasn’t completely forgotten their names. This really is a gradual process, but I notice little differences like having increasing trouble remembering my name as well as her own.

I ended up getting in bed with her, and we both looked at some of the album together. In a little while, she was sleepy. We decided to put away the book and call it a day. I am glad to say it ended on this high note. I had expected jazz night would do that. As it turned out, it only set the stage while her family photos became the main event. I was relieved the day ended so happily, without any more signs of confusion.

I am also glad to report that Kate was up a little earlier this morning and in a cheerful mood. We’re back on track (and back at Panera).

More Confusion

Kate got up from her nap right after I uploaded the previous post. She was ready to get out of the house, so we drove over to Panera. On the way, she asked me to tell her my name. Then she asked me her name. After I said Kate, she filled in the rest. Then she asked my name again. She tried to repeat it and couldn’t. When we got to Panera, she asked the name of the restaurant. Several times over thirty minutes she asked again. She also asked my name again as well as her own. Then she asked my parents names. I thought it was strange that she wasn’t working on her puzzles. I always set up the iPad with a puzzle that is ready for her. Apparently, she left the iPad inactive for so long that it went to sleep. After a while, I asked her why she wasn’t working puzzles. She didn’t realize she could. The iPad was sitting right in front of her. She hadn’t noticed or noticed and didn’t remember how to start it. I turned it on for her, and she is working the first puzzle, and we have been here almost 45 minutes.

Although she has asked almost all of these same questions other times, she seems especially confused today. Each time she asks for the same information, I get the impression that her lack of memory is troubling her. I hope we aren’t preparing for another anxiety attack tonight. As I said in my previous post, I hope the evening at Casa Bella saves the day.

A Slow Start on the Day

Kate was late getting up today. It was a few minutes before noon when she appeared and said she was ready to go. She was dressed appropriately for the day except that she was wearing a bathrobe over her clothes. She was carrying two night gowns over one of her arms. As we walked toward the garage, I told her we were expecting it to be hot and that she might not need her robe. She accepted that without a challenge. I wasn’t going to say anything about the two gowns. Then she started to put one of them on over her clothes. When she did that, I said, “I don’t think you’ll need the night gowns either.” She put both of them down on the island in the kitchen and off we went to lunch.

After we ordered, she seemed tired and confused. She asked me to tell her my name. Then she asked me her name. That was followed by asking if we have children. I told her about them and their families. I pulled out my phone and showed her several pictures taken with them in the past few months. As we went from one picture to another, she kept asking me who the people were. Some of that is related to the size of the photos on the phone coupled with her eyesight. Her vision in one eye is 20/60. She also has cataracts that are affecting her sight as well. I’ve been in conversations with the ophthalmologist about surgery. We had decided to wait until her next appointment in January. I am beginning to rethink that decision.

On the way home, she said asked if she could take a nap. I told her that would be fine. She didn’t waste any time getting into bed. It is now 4:15, and she is still in bed. I woke her 25 minutes ago, but she hasn’t moved. Tonight is jazz night at Casa Bella. We’ll be leaving for that at 5:30. She always enjoys the musical nights. I hope this perks her up, but then I wonder about getting to sleep tonight.

This time I got the right answer.

You may recall that I recently mentioned we had had a strange experience at dinner last Saturday night. I told her about an experience I had had several years ago when I served on a pastor nominating committee at our church. Kate said, “You know what I’m thinking?” I didn’t and said, “I’m sorry, I don’t. She said, “You know.” I assured her I didn’t and asked her to tell me. That upset her. She said, “Just forget it.”

At Panera yesterday, she asked the same question. This time it wasn’t in the context of something I was saying. We had both been silent when she said, “You know what I’m thinking?” This time I took a moment to carefully consider my answer. Then I said, “That you’re glad we got married.” She smiled and said, “That’s it.” I said, “Me too.”

I felt like I had scored a victory. She often says that she is glad she married me. That is why I guessed correctly this time. I think I missed it the previous time because it followed something I had told her. The context in which she asks her questions is often relevant to understanding what she is thinking. If I can’t figure out what she wants, she doesn’t help me. She just gives up. I wish I always said the right thing. I guess that is too much  to ask for.