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?

Predicting What Comes Next

For as long as I can remember I have followed regular routines. I’ve had many friends who kidded me about eating Kellogg’s Raisin Bran every morning from the fourth grade until three or four years ago. There really were exceptions, but not many. I have applied this same routine to caregiving though it doesn’t work as well. Kate is not naturally inclined to following a regular pattern. When you add Alzheimer’s to the mix, my activities are not as predictable as I would like.

Before this sounds like a gripe session, let me quickly say that Kate is the best person to care for that I can imagine. As we have for our entire marriage, we have been able to accommodate our differences with a minimal amount of effort. We owe that to something we have in common. Each of us wants to please the other.

Alzheimer’s is disruptive to routine. In most respects, some might find it surprising just how routinized our lives are. From the time Kate wakes up, our lives are pretty predictable. It’s before she wakes up that leads to this post. Until a few months ago, I knew about when she would get up each morning. It might vary by thirty minutes to an hour, but she got up around 9:00 and would be ready for a trip to Panera around 10:15. More recently, that has varied from as early as 7:00 to as late as noon. Yesterday, for example, I woke her at noon. She would have slept long if I had let her. I don’t know what time she got up this morning, but she was ready for Panera before 9:00.

In the past year, I have ceased making any commitments before noon. That is sometimes a challenge as it was earlier this week when I scheduled an appointment with her ophthalmologist. We had to work to find a time that was suitable for us and for the doctor. On the whole, avoiding any morning obligations has worked well. That’s something I plan to continue.
The only minor problem for me is on the days we have a sitter. I like to have lunch with Kate before the sitter arrives. About a third of the time, that requires my waking her. I don’t like to do that because she is always slow to wake up. I work hard not to rush her. On quite a few occasions, I have called the sitter and asked her to meet us at Panera. That works, but I would have enjoyed spending more time with Kate before having to leave.

The most important issue for me is wondering if the change in her sleeping pattern signals something else. I may be overly sensitive, but we have a mutual friend whose husband died earlier this year. We had been with them a few months earlier. His wife told me that shortly after we had been together, he started sleeping more. Then he started a decline that ended in his passing.

I recognize that Kate’s change is different from his. Hers is from a pattern that was fairly stable to one that is now erratic. His was from a stable pattern to a steady decline. Rationally, I know that this may not portend anything that should be of concern. As a caregiver, however, I am always sensitive to any signs of change. Most of them have been markers in her overall decline. This sensitivity is very unlike me. I think caregiving has led me to notice little things that I wouldn’t if Kate did not have Alzheimer’s. I have often thought that caregivers spend a good bit of their time either solving problems or trying to prevent them. I believe wondering if small changes in behavior mean something of greater importance is a natural consequence of that perspective on caring for someone you love.

A Minor Bump in the Road

It has been almost ten months since I engaged the services of an agency to provide a sitter for Kate three afternoons a week. I agonized over this for several months prior to taking action. I was concerned about how Kate would respond. It turned out I didn’t need to worry. She responded quite well. During the first couple of weeks we tried several sitters that didn’t work out, but we quickly settled into the two who are with us now. Anita comes on Mondays. Mary comes on Wednesdays and Fridays.

Although things have gone well, I have never completely adjusted to leaving her with someone else. On several occasions, one of the sitters has been unable to be here. In these cases, the agency was prepared to send a new person. Each time I declined. I didn’t want a new person to come in without our meeting her ahead of time. I know we are going to need more sitters as time goes on, but to me it is important to have them come out to the house for an initial interview before I leave them with Kate. That leads me to what happened yesterday.

Last week, I received a reminder of a meeting of an advisory board on which I agreed to serve several months ago. I called the agency to see if they could arrange for either of our current sitters since my meeting is in the morning and this is not one of our regular days. The person with whom I spoke said that they were both assigned to other clients at that time, but she would see if she could do some switching. I waited until Monday and called back to see if she had been able to make a change. She said she was still working on it.

When I hadn’t heard anything by yesterday, I called again. The person who answered the phone told me they were sending a new person. Of course, I told her I didn’t want a new person and that if that were impossible, I would just miss my meeting. I felt the person giving me the news was not as understanding as she should have been. I did not have a problem with their not being able to provide the regular sitters. I did object to their not calling me to let me know. I felt the person I spoke with yesterday was being too defensive and didn’t show  proper concern for Kate’s or my feelings about the situation. That was especially true since I would have to leave for my meeting before Kate would be up. I didn’t want her to wake up and find a stranger to greet her.

This is not a big issue, but it is the second time in the past few weeks that they have surprised me. The first one was a phone call asking me if I still wanted a sitter on Monday. I told them I did but was curious as to why they should ask. She said, “We noticed that you haven’t had anyone that day in a while.” I told her that one of those days was because the sitter was sick. The other was Memorial Day. They had specifically called to see if I would need them on that day. I told her, as I have for other holidays, that would not be necessary. I felt that should not have been construed as a desire or intention to reduce our in-home care. In fact, when we began the service I had conveyed my desire to keep Kate at home. That would eventually involve 24/7 care. It just seemed like they didn’t understand our situation.

As with so many things, I believe the situation could have been handled better on both ends of the line. I should have been more specific about my desires for sitters. I depended on that’s being conveyed to the staff by the representative with whom I made the original arrangements. I think I need to go into the office and meet with each of the staff personally. Communication is always so difficult, especially when you are dealing with multiple people. There are at least 4 different people I talk with at the agency. I believe each of them has individual responsibilities and skills that are different from the others.

As I say, today’s issue is not a major one. I just want the agency to be more of a partner in Kate’s care. They need a better understanding of situation and our long-term plans. I’m going to see if I can facilitate that.

A Thought on Caregiving

At lunch with the Greens the other day, Angela told me a story of how a friend who was a caregiver for his aunt dealt with a situation all caregivers for people with dementia (PWD) face, what to do when your loved one keeps asking the same question over and over. She said he made signs that he could hold up and show his aunt. I said, “That sounds like something done for the convenience of the caregiver and not the PWD.” She went on to explain that she had heard that having a visual helps the PWD to remember.

Having reflected on this a bit, this approach misses something important. From my perspective, one of my pleasures is being able to help Kate with something that she either can’t do or finds difficult or inconvenient to do. Every time she asks me someone’s name, where we are, or anything else she has forgotten, she gives me an opportunity to do something for her.

I believe one of my greatest privileges is to walk with Kate through these last chapters of her life. I intend to keep answering her questions and to do it happily. These are things she wants to know, and I am glad to tell her. It will be sad day when she no longer asks me questions.

Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.

Travel can be confusing, especially in the middle of the night.

My mother had dementia. Dad cared for her without any help except for Wednesday morning when he dropped her off at an adult day care center. That allowed him to go to Kiwanis and then grocery shop. He told me very little about his experiences in caring for Mom. I do remember one thing. He said he tied a string from her arm to his when they went to bed so that he would know if she got out of bed. I feel a real connection to him now that I have become Kate’s caregiver. A large part of our responsibility involves either solving problems or preventing them. His use of string was one of the things he did. I have my own bag of tricks.

When Kate and I are traveling, I try, and usually succeed, in getting a room on the lobby level. That way I can get to breakfast and return to the room quickly. Before leaving on a trip, I also print signs that say “ We are in Lubbock (or wherever). Richard is having breakfast in the lobby.”

It’s impossible to prepare for everything. What happens in the middle of the night is one of those things. Last night, Kate got up to go to the bathroom. She found it easily since I left the bathroom light on and had her sleep on the side of the bed that is close to it. When she came out of the bedroom, she started walking toward the door to the hallway. (I always put on the security latch before coming to bed because she has started to go into the hallway on a previous trip.)

Recognizing that she would have no idea where we were, I said, “Kate, we’re in a Residence Inn in Lubbock.” 

She looked very confused and said, “Who are you?”
Richard: “This is Richard.”
Kate: “My husband?”
Richard: “Yes.”
Kate: “Where are we?”
Richard: “Lubbock.”
Kate: “Why are we here?”
Richard: “We are visiting Kevin and his family.”

She got back into bed and slept until almost 9:00. I can’t imagine what it is like to experience such confusion. I am amazed at how well she takes it. To me it would be frightening.

The Start of Travel Day 2

Good Morning, from Nashville. As I write, it is almost 8:30. I just got back from breakfast. Kate is still sleeping soundly. It was almost 10:30 when she went to bed last night. That’s later than usual for her. For a long time she has called it a day between 8:00 and 9:00. That has been inching up recently. If you’re a regular reader, you know that her sleeping has been become quite erratic. I hope this is not one of those days she feels like sleeping late. We need to leave the hotel by 10:30 in order to get to the airport, check in, and get lunch before our flight at 1:00.

In a way it’s funny how much of a burden someone with OCD tendencies puts on himself. Kate is quite relaxed about the trip. The only time she is bothered is when I rush her. That can be a real problem. I guess I am a little bit like a tour operator. I know there is a schedule we need to meet. In order to do that there are a whole series of things that have to be done before. I’m always at work trying to make this happen without rushing her. I’ve become more successful over time. It’s hard for me to remember her last panic attack. I don’t like to see these.

Increasingly, Kate has helped me by getting up without much problem even when she hasn’t wanted to. I’m going to count on that. I know it takes her an hour or hour and a half to get ready from the time she gets up. That means I can only let her sleep another thirty minutes or so. If she gets up easily, we’ll have no problem. That’s what I am counting on.

There is another thing that I have to plan around when we are traveling. I like to get up early and have breakfast while Kate is sleeping. I realize, however, that she won’t remember where we are. I don’t want her to be uneasy if she wakes up before I get back. Before we leave home, I create signs for each place we stay. For example, I have an 8 ½ x 11” sign that says, “We are at the Residence Inn, Nashville, TN. Frank is having breakfast in the lobby.” In addition, I make sure that I eat quickly or bring my breakfast back to the room. Fortunately, these are insurance measures. Kate almost never wakes up before I return. When she does, she goes to the bathroom and returns to bed.

I feel good about today’s trip knowing that we have a direct flight. In the past, we have changed planes in Atlanta. With Kate’s arthritic knee giving her trouble, that could be a problem. After losing Kate in the Atlanta airport for thirty minutes last fall, I am more than a bit skittish about going through that again.

Kate’s Treats

Yesterday after leaving the orthopedist, we went to Panera. We hadn’t made it in the morning, and Kate said she was a little hungry. I got her a muffin. There’s a nail salon a couple of doors down from there. It had been too long since she had had a manicure and pedicure, and they were able to get her in and out before dinner. I used to see that she went there at least once a month, but somehow got out of the habit. She doesn’t express any special pleasure when she goes, but she used to enjoy it. Besides she needs to have her nails trimmed.

Two or three years ago I also arranged for her to make regular visits to a nearby spa. She goes every two weeks and alternates a massage one time and a facial the other. This is not something that was a regular part of her life before I started it, but I thought it would be good for her to have something that was a treat and something she could do without me (except for making the arrangements and providing transportation). Like the mani/pedi, she doesn’t express a lot of enthusiasm, but I believe she must enjoy it. The only comment she makes is how soft and smooth her skin feels after the facial. She’s right. It does.

Living with Alzheimer’s often involves a bit of “Recalculating.”

Years ago when GPS devices were first on the market, I bought one for my car. I found it can be quite valuable, but sometimes I would take a wrong turn. When I did, the woman’s voice would say, “Off route. Recalculating.” She was determined and wouldn’t stop repeating herself until I followed her instructions.

I’ve always found that a metaphor for life. Everyone has had the experience of heading in one direction (a career goal, a financial goal, personal goals, big goals and small goals) when something happens, and find himself “off route.” Then it is time to recalculate, or, as some would say, “It’s time for Plan B.”

That is a message with which every caregiver for a loved one with Alzheimer’s can identify. It might be especially so for someone like me who is such a creature of habit. We are always encountering surprises and recalculating. We learn to be flexible or simply suffer. I like to choose flexibility. Let me give you several little examples from yesterday and this morning.

For the past two years, Kate and I have eaten almost every Sunday meal at Altruda’s, a local Italian restaurant. We split one of their chicken entrees each week. They have four that we choose from and rotate from week to week. We never have dessert although we both love them. Over the past couple of weeks, I have eaten a little more than I normally do and picked up a couple of pounds, so I decided to watch more carefully what and how much I eat. The server knows us well, specifically that we never get dessert, but yesterday she asked if we wanted one. I promptly told her no. When I did, Kate said, “Well, I do.” We asked what they have. The server showed us the menu but told us that they had a special dessert that was not on the menu – banana pudding cake. It sounded very rich, but I told her to bring us one. It was a bigger piece than I expected. In addition, it had a very thick, calorie laden icing, banana pudding between two of the layers, and icing on top of the bottom layer. So much for my watching what I eat. As I think about the future, I don’t want to look back and wish that I had not worried so much about my weight and put the emphasis on enjoying the experience with Kate. I believe I made the right decision.

Before going to bed last night, I picked up two glasses in the family room, took them to the kitchen, and put them in the dish washer. Last night I had put Kates meds in a small glass and water in another larger one. I noticed that all of the pills were gone from the small glass, but there was a milky colored liquid in the bottom of the other glass. It was obvious that she had dropped some of her pills in the glass of water. A little later, I gave her a Tylenol for some pain in her knee. I put it in a small cup and gave her a larger glass with water. She started to drop the Tylenol in the water. I decided giving her two glasses was confusing her. I won’t do that again. I had only done it because she has been dropping some of her pills and thought putting them in a small glass would prevent that. Solving one problem often introduces another.

Kate has surprised me twice this morning. I didn’t realize it, but she had gotten up while I was taking my morning walk. (I suspect that one of the pills that had dissolved in her glass last night was her Trazadone. That makes her sleep a little longer.) I walked into the kitchen and booted up my computer to check email, Twitter, and Facebook, and to write the story above. Before I got settled, Kate walked into the kitchen dressed and ready for Panera. I told her I would need to change out of my walking clothes and get her morning meds, and we could go.

That’s what we did. We arrived somewhat earlier than usual. After an hour, she was tired and wanted to go home. When we got inside, she went to the bathroom. In the meantime, I started to boot up my computer and turn on some music thinking we might go the the family room and enjoy a quiet morning. Remembering that she was tired, I went back to the bedroom to see if she was in bed. She was looking for her iPad, and said, “What can I do?” I asked her what she would like to do. She thought a moment and said, “Panera.” We had been home less than ten minutes. So here we are again. She is eating a sandwich. We’ll leave in another twenty minutes so that I can get ready for Rotary and the Y this afternoon.

Kate is especially cheerful this morning. It’s been a good morning. Recalculating has worked.