Posted on

Predicting the Future and Planning Ahead

Among the news dominating the airways today is Hurricane Florence as it approaches the East Coast of the U.S. It reminds me that at some time or other all of us find ourselves attempting to predict the future and consider our options. Of course, some things are easier to predict than others. Predicting the path of a hurricane has improved decidedly over the years; however, a lot of the things that you and I try to predict are much less reliable.

That leads me to comment on my own expectations for the future with respect to Kate’s Alzheimer’s as well as how I will respond to it. First, I’d like to say that I have recognized the importance of living in the moment with Kate. Just about everything we do is geared toward making the most of our time together. I am satisfied that it has worked to our benefit.

On the other hand, I tend to be a planner. I believe in the value of making preparations for the future. For me, that has meant understanding the various options available to us depending on Kate’s situation. Since Kate and I played a significant role in caring for my mother, who had an undiagnosed form of dementia, and Kate’s mother, who had vascular dementia, I have been painfully aware of where the journey ends. I am also well-acquainted and experienced with the variety of care options that are available to us during the progression of her illness.

As far as knowing if and when we might need to exercise one or more of these options, I’ve been far from omniscient. My mother died about four years after her doctor (actually, the social worker) told us she had dementia. My dad and I knew it sometime before then. If I had known then what I know now, I would have approached the doctor earlier. I suppose I was like most people. I just thought she was experiencing normal memory loss that accompanies aging. Besides that, I didn’t recognize ways in which Dad and I might be proactive in making Mom’s life easier. Looking back, I think Dad intuitively did the right things. He kept her actively engaged. Even near the end of her life, he usually took her with him when he went out. Of course, he had little option since he would never accept our getting help.

Kate’s mother died six or seven years after a stroke that led to her vascular dementia. For almost that entire period of time, she received in-home round-the-clock care, a year or two in her home in Fort Worth and almost five and a half years in our home in Knoxville.

Based on these two experiences, I never would have guessed that Kate and I would be able to enjoy ourselves so much at this stage of her illness. My approach as always has been to continue to do all that we can for as long as we can. At each stage, I have tried to look ahead to be prepared. Along the way I’ve asked myself the following questions. How long can we live a normal life?

How long will we be able to travel?

What will happen to our annual trips to Chautauqua?

When will I have to seek in-home care?

Will I be able to keep her at home as her mother did for her father? As my father did for my mother? As we did for Kate’s mother? If so, when will need 24/7 care and for how long?

Will I need to consider either or both of us moving to a care facility of some type? Independent living? Assisted living? Skilled nursing? A continuous care facility?

Shortly after the diagnosis, I thought that in 5-7 years we would be unable to have much pleasure. Within a couple of months, Kate and I both realized that we were living just as we were before. For the most part, that continued for another year or two. I realize now that this varies from one person or family to another. We have been more fortunate than I expected the entire way.

As far back as 2014, I thought our international travel was over. We traveled to New Zealand for three weeks. In May 2015, we took a trip to Switzerland for a similar period of time. That trip convinced me that was our last trip of that nature. It was simply getting too difficult for me to manage her and to handle the travel arrangements as well. In the Fall 2015, I made initial plans for a Mediterranean cruise from Barcelona to Amsterdam for May 2016. I could cancel without a penalty until the end of February. As Christmas approached, I began to question the viability of those plans. I decided to take a one-week cruise to the Caribbean in January 2016 just to see how well she (and I) got along. That experience convinced me to cancel our May cruise. Kate simply didn’t enjoy it as much as I had hoped. I think everything was too unfamiliar for her. It was simply too confusing.

Spending a week at Chautauqua during the summer was one of our favorite things. In 2016, for the first time we spent three weeks there. I was anticipating that as our last time there. I was wrong. I decided to try one more time. We went back in 2017 for a one-week stay. We enjoyed ourselves, but I was convinced that we would not be back. This time I was right.

Making the decision to engage in-home care was a big step. I never felt that I really wanted it from an emotional standpoint. I did, however, believe it was important to seek help if I wanted to care for Kate at home for the entire journey. This past Friday we completed our first year with a sitter. Once again, my guesses regarding the future were not accurate. That is probably a year or two later than I might have guessed after her diagnosis. We began with a schedule of three days a week for four hours each visit. That is still our schedule. I’ve moved slowly on increasing in-home care. I am grateful that we have been able to enjoy many pleasures a good bit longer than I expected, but I see more dramatic changes ahead. That is raising new questions about the future.

I suspect that this fall or winter I will add additional time. I haven’t been particularly good at predicting the future. I hope it won’t be necessary for a while longer.  I’ll say more about that and the possibilities for long-term care in Part 2.

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

Kate changes. I change. Things don’t always work out.

As Kate has been sleeping later in the morning and also becoming more dependent, I have been making my own changes. I know that I have talked a lot about living in Kate’s world, and that it has worked. I’m not sure that I have also stressed that caregivers must also engage their rational abilities as well. That means shifting gears to solve or prevent problems. I’ll give you an example of what happened this morning.

It has become increasingly challenging for Kate to select her clothes in the morning. She has tried selecting them the night before, but she usually forgets some of the things she will need (e.g., her shoes, socks, a top, etc.). I decided to address this issue last week and have been selecting her clothes either the night before or in the morning before she is up. This has worked pretty well.

You may remember that she fell out of the shower last week. I decided it was safer for her to shower in our bathroom that has a walk-in shower. Some mornings, she chooses our bathroom anyway. This past week I caught her before she was about to use a shower in another bathroom and suggested that she use ours. That worked.

When she showers, she often uses several towels. That usually means at least two bath towels. In addition, she often uses one or more hand towels and, sometimes, the bathmat. When she finishes she drops or throws them on the floor or counter tops or whatever is nearby. That’s not a problem for me when she is using another bathroom; however, it conflicts with my OCD when she uses our bathroom. I try to keep all the towels, toothbrushes, and toothpaste in their “proper” places. That means a clean up after she showers. Since she doesn’t know which towels are hers, she often gets mine. To solve that I started keeping two on top of the counter directly across from the shower and pointed them out to her. Once or twice she has used at least one, but she still opens a drawer and pulls out one or two other hand and/or bath towels.

When I had the bathroom redone, I had two hooks installed inside the shower to hold towels. That way the person showering could dry off without opening the door. That gave me another idea. After my shower last night, I hung two bath towels for her on the hooks. In addition, I left the original two towels for her on the counter in case she wanted more. I thought I had it made. I had adequately addressed the problem, for me anyway. The shower issue was no problem for her. It was solely mine.

Now I can tell you the results I had with my little experiment. Kate went to bed earlier last night, so I thought about the possibility that she might wake up earlier this morning. I checked on her once or twice, and she was still sleeping. I got busy on my own things. When I checked on her again, I discovered that she had already showered and not in our bathroom, so I hung her towels back on the towel rack where they are normally kept. I can’t say that my plan for the shower didn’t work. I just slipped up and didn’t get to her quickly enough.

Next I noticed that she had left all the clothes I had put out for her right where I had put them last night. She had gotten out her own clothes except for a top. I went to her closet and brought one to her. I also got her a pair of shoes and socks. She suggested that I let her take care of the rest, and I did. When she was ready to go to Panera (yes, we were early enough for that), I noticed that she wasn’t wearing the top I had picked out. I didn’t say anything because the one she picked out was just fine. This often happens. I am never sure if she just didn’t want to wear the one I picked out or if she misplaced the one I had given her. I think both of those things happen from time to time. I don’t worry about this. The important thing is that she has a top to wear. However, it’s one more example of the things that I do to prevent a problem only to discover it didn’t work the way I intended. I’m just glad our problems are not bigger than this, except for her Alzheimer’s itself. That, of course, is the biggest issue we have faced in our entire marriage.

Posted on

What is different between caring for a parent and caring for a spouse?

Sometime during the late summer or early fall of 1993, I received a call from my mother. Calls like this one were always from my mother, not my father. In our conversation, she brought up the topic of their planning ahead and thinking of moving out of West Palm Beach to some place that would be closer to either my brother or me. We didn’t settle anything in that conversation, but after that I talked with Kate and then Larry who talked with his wife. Together we decided that being near to us would be a good option, and over Memorial Day weekend in 1994, I flew to West Palm Beach and drove them to Knoxville. The movers delivered their furniture the following day.

Although I knew that my dad had had several medical problems over the years, I didn’t think that might be the motivation for their move. I still don’t know. I do know that three or four years later, the social worker at their gerontological practice informed us that Mom had dementia. She approached the subject with us very delicately, but we already knew. Exactly when we became aware I am not sure. It wasn’t right away. Now that I have had a little more experience with dementia, I feel sure that she was showing signs of dementia before their move. She died in 2002, four or five years after the social worker gave us the news.

I spent a significant amount of time with my parents immediately after they arrived in Knoxville and through her death. After her diagnosis, I was particularly attentive to helping Dad to the extent I was able. I was still working and traveling, but I was with them a good bit. During the last year or two of Mom’s life, I frequently took them an evening meal. Larry and I worked with the social worker to design a plan for their care as Mom’s condition worsened. Dad was never receptive to having anyone come in to help. Neither was he interested in moving to an assisted living facility. He didn’t have the financial resources to pay for it, but Larry and I were already subsidizing their income significantly and would have been willing to pay for it.

Looking back, I am amazed that Dad was able to handle her care so well. I never heard him complain. He did many things to keep her active. They delivered Meals on Wheels. They volunteered at a local senior center. They attended a local theater. They made a lot of friends. When she died at home, he was turning her every two hours. Fortunately, that lasted only a day or two.

I thought I understood exactly what he was going through as her caregiver. Since Kate’s diagnosis, I feel I really understood very little. I also feel quite different about Kate than I did about my mother. I loved Mom, but I never felt as troubled or sad as I have felt about Kate. I have also read a lot about other caregivers who cared for their parents. As a result, I have made two observations. First, I realize how easy it is for sons and daughters to miss the many signs of dementia. Second, I am often surprised at how long it takes for us to take action. These go hand in hand. Unless we are living with our parents, we don’t fully grasp the symptoms of dementia.

I don’t believe that I have felt differently about Kate’s Alzheimer’s than that of my mother’s because I loved Mom any less. I believe it’s because sons and daughters whose parent is not living with them never have sufficient information to fully understand what is happening. It is easy to miss. Many of the people who have known Kate have been surprised to know that she has Alzheimer’s as well as how far along she is. That is because they don’t have the same opportunity to observe all of the symptoms. They see her doing much better than they can imagine. They generally imagine the latter stages of dementia.  They don’t understand how much time there can be between the first signs and the state of a person at the end. In addition, they don’t understand that someone with dementia still retains many capabilities even as they lose others.

Of course, there is something more that makes me respond differently to Kate than to my mom. That’s the nature of the relationship itself. At least in successful marriages, the two partners live such intertwined lives that in a way each becomes a part of the other. At lunch on Tuesday, I noticed a “Yin Yang” tattoo on the arm of the hostess. I pointed it out to Kate. It was no surprise that is something that has faded from her memory. She asked about it, so I pulled up a picture on my phone and then explained the meaning of it. As I did, I thought it applied beautifully to our marriage and that of many other couples as well. In significant ways, we are very different personalities, but we complement each other. We also overlap in other important ways. During the past 55 years, we have shared many highs and lows together. There is no other person with whom I have shared so many significant experiences. In our particular case, that has been especially important in helping us adapt to the changes brought on by Kate’s Alzheimer’s.

It also means that what happens to her also happens to me. When she suffers, I suffer. When her life changes, my life changes. This helps me understand the difference in the way I feel about her compared to the way I felt about my mom. Not living with my mom, I never fully understood what she was experiencing. Perhaps more importantly, the love relationship between a husband and wife is quite a bit different from the love one has for a parent. It isn’t that it’s any less. It’s just different.

Posted on

So, how am I feeling?

I am sometimes asked how I’m doing? I know the question is asked because people hear so much about the stress experienced by caregivers. As someone who has read a lot about dementia and caregiving, I am quite familiar with the dangers we face. One of the things I’ve learned is that over 60% of caregivers die before those for whom they care. As a result, I am very sensitive of the need to take care of myself as well as Kate. So, how am I doing?

I believe I am getting along quite well. Does that mean I don’t experience any stress? Not at all, but I do a lot of things to ease that stress. I just finished reading Support the Caregiver by David Davis and Joko Gilbert. In their book, the authors identify a variety of ways for caregivers to care for themselves. I was glad to see that I have used all of them. I’ve relied on three in particular. Exercise, reading, and social engagement (one of my choices for “Me Time”). How much time I have devoted to them has varied. For example, Kate’s sleeping late in the morning has put a dent in my social contact. Though our morning trips to Panera began for Kate, I found it has been just as important for me. Thankfully, we are still able to eat out and make it to Barnes & Noble in the afternoon. That is good for both of us. In addition, I get together for coffee with a friend every Friday and maintain an active email communication of two close friends from my college days at TCU.

Having less social contact in the morning and the number of desserts we are now eating has led me to increase my exercise. Previously, I was averaging just under 3 miles each morning. My new average is over 4 miles. Very quickly I dropped about 4 pounds that I had wanted to lose for several months. Of course, I could have given up the desserts, but I don’t want to look back some day and say, “I wish I had enjoyed more desserts with Kate.” It’s not just the dessert; it’s those moments of sharing one together. Since my reading is actually listening while I walk and at the Y, that has also increased my reading time. That’s an extra bonus.

Within the last 4-6 weeks, I have added another way to care for myself. I have begun to meditate. I had read so much about the benefits of meditation, I just had to try it. I’m not ready to say that has made a difference in how I feel overall, but I have found it very relaxing. Right now I meditate in the pool for 20 minutes after getting home from my walk. I was motivated to use the pool because I enjoyed cooling down after walking. It won’t be long, however, before the water will be cooler than I like. When that happens, I may sit on the patio. As the fall weather approaches, I will move to the family room.

One of the things I have learned is that there are many forms of meditation. I was influenced by a book that dealt with mindfulness, being mindful of one’s self as well as one’s surroundings. It would come as no surprise that I incorporate music with meditation. I have several albums of sacred music that are very peaceful. I always begin with my eyes open and take in what each morning looks like at the back of our house. The neighbor behind us has a dense growth of trees. That has sensitized me to the sometimes subtle, sometimes dramatic differences each day. Some days the trees are perfectly still. Not a leaf seems to be moving. This morning the trees were swaying in the wind. Although morning can be an active time for birds and squirrels, sometimes I see hardly a sign of either. During the last part of meditation, I close my eyes and listen more carefully to the music and the sounds of nature.

I find that I become very relaxed. When my timer goes off, it feels a little like waking up from a sleep. It’s a good feeling, and I don’t like to end it abruptly. I don’t hurry to get back inside. When I am back in the kitchen (my office), I continue to play very soft music for an hour or two. That is working especially well now that Kate is getting up later. This is becoming another of my options for “Me Time.” I don’t schedule anything in the morning unless it is necessary. I started doing that for Kate. Now I feel that works for me as well.

All of this is to say that I am mindful of the need to take care of myself and believe I’m doing a pretty good job of it; however, I still haven’t said how I feel. The answer is I feel good most of the time. I especially enjoy my time with Kate. I treasure each moment with her because I feel they are drifting away. I have sad moments. Those are usually the times when she is down, but they also occur when I see new signs of her decline. I am continually adapting to her being able to do less and less. At the same time, I have a sense of satisfaction that we have done the best we can to take advantage of our time together. That’s a good feeling. Just as important, I know that we will continue to enjoy ourselves. I hope that we will be able to do that a good while longer.

Let me conclude this post with something I read in Support the Caregiver the other day. The authors distinguish between being “sad” and experiencing “sadness.” They suggest having sadness is an “appropriate and healthy emotion for the loss of a loved one.” Being sad prevents one “from moving forward into a healthy and productive life.” I am not sad, but I do have moments of sadness. I believe the same is true for Kate.

Posted on

Living in the Moment

People often talk about the importance of mindfulness and living in the moment.  That is something that has taken on greater meaning for me since Kate’s diagnosis. I believe we’ve done a good job of that. More recently, as Kate’s memory has declined, living in the moment has come to be more literal for her. For that reason, I find myself trying even harder to make those moments as pleasurable for her as I can.

I have a plan in mind for each day. I try to avoid rushing her, but I do select a variety of things for us to do every day. A good example would be our morning trip to Panera. I know it’s something she likes to do, but I don’t wake her up. At least twice last week, she slept until almost noon. In those cases, we went directly to lunch. There are occasions when I do wake her. That happens on a few occasions when I have made lunch plans for us.

Yesterday was one of those. My brother Larry and his wife, Margaret, were passing through Knoxville. We were supposed to meet them at Casa Bella for lunch at 12:30. Knowing that it can take up to an hour and a half for her to get ready, I started gently waking her around 10:00. She seemed quite tired, so I let her sleep a little longer. She finally got up just after 10:30. I had all her clothes out for her. That enabled her to get ready without rushing.

At 11:30, I got a call from my brother. They were making better time than anticipated and were to arrive at the restaurant a couple of minutes after noon. At that point, Kate was still not dressed. I decided it might be better if we ate at a place closer to our house. That kept me from rushing Kate. The alternative plan worked perfectly. We were walking from our car to the restaurant as they drove up. We had a pleasant visit with Larry and Margaret, and they were on their way less than two hours later. That gave us the opportunity to come back to the house for an hour before getting our hair cut.

After our haircuts, we had another hour before we needed to leave for Broadway Night at Casa Bella. It was another good evening of music, food, and fellowship. We were home by 9:00. This is the only evening activity I schedule these days. All three of the local theaters have matinees on Sunday. We always attend those. This is the way I manage to keep us active but not racing from one thing to the next. It seems to be working.

I wonder if my management of this schedule qualifies as mindfulness on my part? I am clearly trying to be mindful of Kate’s needs, but I often discover I overlook other things that I should have done. I may have to meditate on this.

Posted on

An Example That What Works for One Person May Not for Another

On Monday I had gone to Rotary and to the Y while the sitter stayed with Kate. I had a little time after that and dropped by Whole Foods to connect with their Wi-Fi. While I was there, I saw a friend of Kate’s. I learned that she had recently moved in with her parents to help her mother take care of her father who has Alzheimer’s. It sounded like her father was getting along about as well as Kate. I mentioned our having binged on musical and theatrical performances as well as keeping active by spending time at Panera, Barnes & Noble, and eating out for our meals.

Kate’s friend is a former art teacher in the public schools. That led me to tell her about Judy Cornish’s thoughts about rational and intuitive abilities. I thought that with her artistic background she might be interested in Cornish’s distinction and its implications for caring for someone with dementia. She was interested and then told me her father was a retired band director. Music had been an important part of his life since childhood.

We swapped stories for a while. Then I mentioned our going to Casa Bella three times a month for their music nights. She felt her parents would enjoy the music, but she had concerns about their getting out so much. My impression was that they were not as comfortable getting out in crowds. They prefer to remain at home a good bit of the time. I realized quickly that what has worked for us was not going to be applicable to them.

I may have been sensitized to their situation because of a couple of tweets I saw in the past few days. One had said something about the importance of recognizing that we are not all alike. The other mentioned how uncomfortable some people could be when thrust into many public situations. They eat out infrequently and prefer to enjoy the comforts of home.

As we talked further, it appeared that the friend’s parents were getting along fine without getting out the same way that Kate and I have done. She said her father plays music all the time as he has always done.

I noticed one other similarity and difference from what I have chosen to do. Her mother and I share a common feeling that we don’t like leaving our spouses to the care of someone else. The difference is that I have engaged sitters to be with Kate three afternoons a week. This is a case where my head (rational ability) overrules my heart (intuitive ability). After our experience with our parents and the reading I have done on caregiving, I believe it is best for Kate if I give myself breaks. My plan for the future is to increase that care as her needs change.

Ultimately, I hope that will enable me to keep Kate at home. Time will tell if that is possible. I don’t feel I should commit myself at this time. Since Kate’s diagnosis, I have tried to be sensitive to the changes that are taking place and adjust our activities accordingly. I gave up international travel in 2015. We are now approaching the end of air travel domestically and sticking with day trips or overnight trips to destinations that are not too far from home. I am approaching the rest of our journey with an open mind with respect to what is best for the future. Right now, I believe it is best for me to keep her with me. That could change if I had any significant health issue. I am going to be optimistic.

Posted on

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.

Posted on

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?

Posted on

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.