Giving Out My First “Alzheimer’s Card”

About a week ago, I mentioned ordering small cards with a message that I could discreetly give to people in a public situation. The message says, “My wife has Alzheimer’s. Sometimes she may say or do something unusual. Your patience and kindness are appreciated.” This afternoon we took my car to have it serviced. On the way, Kate noticed a TCU alumni magazine on the floorboard of the passenger side. She had left it there on a previous trip and hadn’t remembered seeing it at all.

When we arrived at the dealer’s, she took it inside with her. As I was talking with the service rep, she kept interrupting to show me pictures and articles. She also commented when she would see “TCU” in a headline. She didn’t recognize that it was a TCU magazine. Several times she asked, “Who is that?” All of them were faculty, students, or alumni. In one case, she asked the rep if she knew the person. When she didn’t, Kate said, “I think she’s a celebrity of some kind.”

While we were in the office, the sales rep from whom I had purchased my last two cars walked in to say hello. That led to a brief conversation about new cars and the new safety features, specifically the indicator that lets you know when a car is in your blind spot. Kate didn’t understand and asked, “What in the world are you talking about?” We tried to explain, but she couldn’t understand “blindspot.” When the service rep took us to our loaner car, Kate seemed confused about which side of the car she should get in. I felt this was a perfect time for such a card. I took one out of my wallet and handed it to the service rep and took Kate to the passenger’s door. When I returned to the driver’s door, the service rep gave me a smile of acknowledgement. I wonder how many of these cards I will distribute.

A Lesson for Alzheimer’s Awareness Month

One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.

This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.

So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.

Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.

Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.

I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.

We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.

Update on Clothes

I recently mentioned the number of recurring themes in my posts. From very early, one of the most persistent ones has been Kate’s clothes. When I say “clothes”, I really mean a variety of issues that involve clothes. At first, it was simply finding clothes for Kate to wear. She didn’t hang them up after wearing them. They were scattered on the floors and furniture of three bedrooms. The problem was exacerbated by her gaining weight and not fitting into her clothes. That led to issues of buying new ones. We went to the stores where she had shopped for years. They tended to stock nicer lines of apparel than suited her needs. They were also expensive. She still wanted to be actively involved in the purchase decisions. She selected things that she wouldn’t wear every day, and she attended fewer special occasions. She was becoming less and less attentive to soiling her clothes. Over time, she started wearing her good clothes to work in the yard. At first, I would get her to put on her yard clothes, but later I gave in.

One of the big steps forward was Kate’s cleaning up the mess in the three bedrooms. We never talked about it. One day she just started picking things up. As she did, I starting discovering the ones that fit and giving the ones that didn’t to our housekeeper. Then I arranged the clothes in the closet she used most often. I put all the tops on the left side arranged by color. I put all the pants on the right side, also arranged by color. Until recently, that had kept me busy because Kate never hung them back in the places I intended.

Kate continued to gain weight. That meant I had to buy larger sizes than in the past. I finally resorted to catalog shopping. That worked very well. I have bought pants, tops, sweaters, jackets, underwear, shoes, and socks. I had to experiment a little with the sizes. That meant a few returns on some of my first orders and off and on since then. I have found several brands to choose from. I have also settled into pants that stretch at the waist. I also buy at least two and sometimes three identical pants in the same color. Online shopping has certainly made my life much easier.

She was still picking out the clothes she wore each day six to eight months. That meant that she sometimes picked out something that was not quite right for either the weather or the occasion. Neither of us liked my having to be so involved with her daily attire.

Now everything involved with clothes is easier except for keeping them clean. The problem isn’t getting her clothes soiled from working in the yard. She no longer works outside. It arises from toothpaste she gets on her tops and food and sauces she gets on tops and pants. That has me washing a lot more now than in the past. OxiClean and I have become good friends. The washing itself isn’t a big problem. In fact, I find that washing and folding clothes are almost therapeutic. That has surprised me because I resisted taking over the laundry responsibilities for a good while. Initially, I tried to prevent as much soiling as I could. Of course, that was a battle I couldn’t win. It’s still hard for me to deal with her clothes getting dirty so quickly. It is not unusual for me to get her a clean top to wear and discover it has toothpaste across the front of it before we leave the house. That’s the OCD in me coming out and is my problem, not hers.

Issues surrounding her clothes present very little problem now. She has things that fit. I know where they are. When she needs something new, I know how to get it without leaving the house. Some of this has come at a cost. The major reason some things are better is that Kate is now more dependent on me for help. I determine what she wears day and night, and I am increasingly taking more responsibility for getting her dressed. I don’t mind any of those things; however, I wish for her that she were able to do more for herself. That’s a sad thing.

Not Everything Goes As Planned

As someone who likes to plan ahead, I may inadvertently convey that everything goes more smoothly for us than it does. Let me assure you that it doesn’t. I plan, but my plans don’t always work out. I am reminded of a cartoon that I saw on our church bulletin board years ago. It said, “God’s response to a five-year plan: Ha. Ha. Ha.” When my plans go awry, it is sometimes not my fault. Other times, it is. As my caregiving responsibilities increase, I notice that it is more the latter. Here are a few examples of the kind of things that I am slipping up on.

As you know, Kate and I go to Casa Bella the first three Thursdays each month. Because we are regulars, we don’t make reservations. We only call if we are not going to be there. The first Thursday in November I slipped up. We were just finishing dinner at another restaurant when I received a call asking if we were still coming. We rushed over and enjoyed the program.

This past Tuesday I was to “attend” a conference call meeting for a committee on which I serve. Although it was on my calendar, I forgot it.

Early last week I received a package with a cardigan sweater that I ordered online. I tried it on to make sure it fit. It did, but I had a little difficulty getting the zipper to work. It took me a couple of tries. It wasn’t until yesterday that I decided to wear it. This time I was unable to zip it at all. Now I need to send it back. In the meantime, I had thrown out the package and accompanying label and instructions should I need to return it. In this case, I didn’t create the problem with zipper, but I normally hold on to packaging and other materials just in case. For some reason, I didn’t follow my normal procedure. It’s not a big deal to correct the problem, but it creates an extra task that I could have easily avoided.

A week ago the father of someone with whom I have worked professionally died. His service was yesterday afternoon. I hadn’t worried about our making it because I had written it on my calendar for 2:30. That should have given me plenty of time to get Kate ready and to have lunch before leaving. Kate has been tired this week. It was just after noon before she got up. This required me to rush her a little more than either of us wanted. She got ready quickly, and we left for lunch right after 1:00.

Knowing that the service was 25 minutes away and that we didn’t have a lot of time to eat, I decided to stop by Panera. When we arrived, it was unusually busy. We couldn’t park as close as we usually do, and it was cold and rainy. Once inside I discovered a long line waiting to order. There were very few seats, so we sat at a community table. Kate is a slow eater. In fact, she does everything more slowly now. It was 1:50 when we left for the church. We arrived with six or seven minutes to spare only to discover that the service was over. It was a short service and started at 2:00, not 2:30 as I had entered on my calendar. That left us with a long 25-minute drive home.

These are all things that anyone could do, but they are not typical for me. I take this as another sign that being a caregiver has an impact in ways we may not perceive or expect. It is easy to become distracted. As we left Panera yesterday, I extended my hand to help Kate step off the curb. As I did, I was carrying an unfinished cup of coffee in my other hand and spilled it on my coat and shirt sleeve. So much for having everything perfectly under control.

A Case of Caregiver Error

I feel like I do a good job caring for Kate, but like everyone, I make mistakes along the way. That happened yesterday. In an earlier post I mentioned that I was going to my doctor’s office for my labs prior to an appointment next week. I knew I needed to allow sufficient time to get Kate ready without rushing her. Since she had gone to bed at 7:30 the night before, I hoped it would be easy to get her up. I was wrong about that. The big problem, however, is that I was writing a post yesterday morning and let time get away from me. I looked up and saw that it was almost 9:30, and we needed to leave shortly after 10:00 in order to be on time. I went to the bedroom. Kate was sleeping soundly. I tried to be very careful in waking her. I didn’t want her to feel rushed. I sat down on the bed and put my and on her shoulder. When she looked up at me, I told her I was sorry to wake her and explained why I was doing it anyway. She didn’t say much and made no effort to get up. When it was just before 10:00, I told her I really needed her to get up, so she did.

The problem then was that she had a mild panic attack. It has been a long time since this has happened. This reminded me of why I work so hard to avoid rushing. I think the problem is that she wants to please me. When she has to rush, she can’t think clearly at all and panics. In this case, she appealed to me for help. She wanted my help getting her out of bed. She held my hand all the way to the bathroom. She wanted to shower but didn’t know what to do. I helped her and then walked her back to the bedroom to dress.

We were ready to go by 10:30. It had only been an hour since I first tried to wake her. That was a record, but it came at her expense. I felt bad about it. She was calm when we left the house. I apologized to her on the way to the doctor. By then, she had forgotten everything. She tried to make me feel better. She said I hadn’t rushed her at all. She was just fine. I appreciated that. I still felt bad because I could have avoided the whole thing.

The rest of the day went well. The Bluefish Grill is located near the doctor’s office, so we went there for lunch. When we got home, we had about thirty minutes before Kate’s appointment for a massage. After that we spent a couple of hours at home. She was tired and asked if she could take a nap and wanted to know where she should go. I told her I would be in the family room and suggested she join me and rest on the sofa. She rested until it was time for us to leave for opera night at Casa Bella. It was a good night for music and conversation. It was decorated for Christmas, and everyone seemed to be in the Christmas spirit. The crowd was a good bit louder than usual but was respectfully quiet during the program. We both had a good time and went to bed right after returning home. It wasn’t another night of “pillow talk.”

From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

Adapting to Changes in our Morning Routine: Part 2

Those who know me well understand that I don’t like change. I do, however, grasp that change occurs whether we like it or not, and the question is how to successfully adapt to it. Living with Alzheimer’s demands a lot of change. When I first noticed that Kate was sleeping late in the morning, I tried to determine why. What I really wanted was to be able to control it so that it didn’t impact our whole morning. I didn’t want a whole morning to myself.

That led me to do several things. The first was to consult her doctor. He suggested eliminating Trazadone from her daily meds. That resulted in her sleeping less time in a 24-hour period; however, it meant she went to bed a little later. Her pattern that had been so regular for years was disrupted.

Along with that has been a change in my whole morning routine. I was most concerned about her getting up early enough on the days we have a sitter. I wanted time for us to have lunch together before the sitter arrived. The other concern involved what time we eat lunch on the days we don’t have a sitter. We have eaten as late at 2:30 a number of times. Since I eat an early breakfast, I am ready to eat as early as 11:30 though eating between 11:30 and 12:30 works fine.

These two concerns led me to focus on getting her up earlier, not to get to Panera at the time we had been going but to be ready for lunch around noon. That meant that I let her sleep until 10:00 or 11:00 before attempting to wake her. Most of the time that gave her enough time to prevent her feeling rushed. Over the past week, it has been more difficult for her to get up.

Yesterday I tried something different. It was a day for the sitter to come at 1:00. At 10:15, I put on some music to gently wake her. About 15 minutes later, I checked on her. She was still in bed but awake. I asked if she would like me to take her to lunch. She said she would. I told her I had put her clothes out and the bathroom was already for her to shower. Then I left to give her a little time. When I returned thirty minutes later, she was sleeping soundly. I decided not to push her and try a little later even if it meant that the sitter took her to lunch. At noon, I checked again. She was awake but still in bed. I told her that this was a day for me to go to the Y and that Mary would be coming to stay with her. I asked if she would like to go to lunch. Again, she said yes.

After she was up and still having trouble getting going, I decided that I could ask Mary to meet us at Panera. I’ve done that a number of times before. As it turned out, we got to Panera only a few minutes before Mary, so I ate lunch with the two of them. When I finished, I left for the Y. I found that worked well and am prepared to do that on a regular basis if needed. It takes a load off me. I don’t have to be as concerned about waking her. It also allows Kate to do what she wants – sleep and take her time getting ready.

When I got home, Kate was resting on the sofa. Mary said they had stayed at Panera for a while before Kate wanted to come home. I gathered Kate had been resting a good bit of the time I was gone. That is another of my concerns. She seems to be using the time with the sitter to sleep. It’s hard for the sitter to control that, and that might easily explain something else that is happening.

Every change brings about responses that lead to other changes. My concern now is letting her sleep so much during the day that she can’t sleep at night. Until the last few days, that has not been an issue. During the past three nights, however, she has gone to bed early but was still awake an hour or two later. I want to avoid that’s becoming a pattern.

So, where does that leave me? The ideal resolution of the problem for me would be to wake her up at an earlier time. That should help her get to sleep more easily. I think I will try that for a few days and see how she responds. It seems worth a try. I may also be able to take advantage of those few times she gets up on her own. She did that a few minutes ago. She’s in the shower, and its only 10:10. That’s not a bad start.

Looking ahead, I believe that I will engage a sitter for at least a couple of mornings a week. I am not ready to do that just yet. Kate is just beginning to require help getting dressed, and I am not sure she would like someone new helping her. One thing is for sure. The changes are not going to stop. I will need to adapt.

Confusion Early in the Day

The other day before leaving for dinner Kate said, “Let me go to the bathroom first. It’s better to be prepared.” I immediately thought about the Boy Scout motto, “Always Be Prepared.” I was never a scout, but I remember that motto. That led me to think about its application to caregiving. (Yes, I relate almost everything to caregiving.)There is little question that those of us playing this role and those for whom we care benefit from being prepared. Of course, one of the things we learn is that there is no way prevent everything. I was reminded of that yesterday morning.

Several weeks ago, Kate fell out of the shower in one of the guest baths. Since then, I have tried to encourage her to use our bathroom. It seemed to me that it would be safer since it has a walk-in shower. Knowing that Kate uses multiple towels after showering and that she grabs whatever she can find, I hang two bath towels on a hook in our shower for Kate each morning. I keep a third towel on the counter directly across from the shower and place a bath mat on the floor beside the shower door. I also put out her clothes and place them on the chair on her side of the bed. I thought that would make it easy to find them because that is where she used to put them. That’s my effort to be prepared.

Sometimes that works quite well. Sometimes it doesn’t. Yesterday was a good example of the latter. I was in the kitchen around 7:45 when I heard a sound from the back of the house. I got up to check and noticed that Kate was in the bathroom next to our bedroom. I heard water running and assumed that she must have been taking a shower. I thought my preparations had been in vane. I went back to the kitchen. Fifteen minutes later, I heard another sound. This time I found Kate standing in the doorway to the family room. I asked if I could help her. She said she would. I asked if she had seen the clothes I put out for her. She didn’t remember. We walked to our bedroom where I saw the top I picked out. It was still on the chair. I located the others on the floor in a guest bathroom along with another pair of pants, top, underwear, bra, and two pair of shoes. I walked to another bathroom and found an additional pair of pants and bra.

Kate was obviously confused. Her memory doesn’t allow her to remember where she puts anything. I tried to envision what must have been going through her mind. It was clear that she had been in her closet and picked out additional clothes. My guess is that she had forgotten she had more than enough to wear in one bath and went back to her closet to pick out another pair of pants but took them into a different bathroom.

At any rate, I got her clothes together and helped her place them in our bathroom where she wanted them. I never quite understand this because she never dresses in the bathroom. She always brings the clothes to our bedroom after her shower. I left her to shower and returned to the bedroom about ten minutes later. She was drying herself off.

At 9:45, I checked on her again. She was resting in bed. I asked if I could help her. She said, “You could get me some clothes.” I told her they were right beside the bed. She asked for underwear. They had been with the rest of her clothes, but I couldn’t find them. I just got another pair from her drawer. I do wonder where the others went.

Before writing this post, I went to Google for more information about the Boy Scout motto. I thought being prepared meant “preventing” problems. According to Boy Scout Trail it means that one is “always ready to do what is necessary to help others. It also means you are ready, willing, and able to do what is necessary in any situation that comes along.” I like that. It’s a great message for all of us who are caregivers, especially at those times when we are most frustrated. I try to follow it. As I write this, I can’t help thinking of Kate. When she pays me a compliment, I often say, “Well, I try . . .” She stops me and says, “You don’t try. You do .  .” I’d like to think that’s what she would say if I told her, “I try to follow that motto.”

Adapting to Changes in Our Morning Routine

For most of my life I have been an early riser. I simply like being up early. As an adult, that has meant getting up, exercising, and going to work. After I retired, I continued getting up between 5:00 and 6:00. Over the past few years, I have made a number of adjustments to my morning routine. For a while after retirement, I dropped by the office for a couple of hours. Gradually, I stopped that to spend more time with Kate in the morning. I continued going to the Y three days a week and started walking the other four days. Over a year ago, I began to feel less comfortable leaving Kate by herself. That ultimately led to my engaging a sitter three afternoons a week. I started going to the Y during that time rather than in the morning. Until recently, I felt all right about leaving her early in the morning to take a morning walk.

Two things occurred that caused me to change again. The first, and to me more serious one, was Kate’s experience of an early morning anxiety attack. This was one of those times when she was upset at not knowing where she was or who she is. I was worried about her having another attack and my not being here to comfort and calm her. Simultaneously, I had a pinched nerve in my hip. This occurred when I stepped up my walking from 2.5-3.0 miles each morning to 3.0-4.5 miles. I decided I should take a break from both the Y and my morning walk.

One of the consequences of this change has been a reduction in my “reading” (actually listening) time. I have missed that as much as the exercise itself. I have always found it much easier to listen while walking or on the stationary bike or treadmill at the Y than simply sitting in a chair at home. I seem to be more distracted at home. I decided to try it anyway. I started listening 30 minutes each day. It didn’t feel right, but I discovered that it worked much better if I closed my eyes.

The hip is better now, but I still don’t want to leave Kate. Over the past few days, I’ve walked in a circle that takes me from our kitchen, family room, living room, dining room and back to the kitchen. I walk for 30-40 minutes while listening to a book. This is not the best arrangement. It is clearly a compromise, but it seems to be a good way to gradually get back into walking and listening. It is definitely not a long-term plan.

An additional issue is that the reduced exercise and reading have been an important part of my effort to minimize stress. That has been unfortunate in that it has occurred at the same time Kate is declining more rapidly. On top of that, Kate’s sleeping later in the morning means we are not as regular in making our morning trips to Panera. We are beginning to lose touch with that community of friends whom I have always recognized as helpful stress relievers. That, in turn, means I feel more stress than I have before. I am looking at other possibilities to right the ship. I’ll address that in another post.

Miscellaneous Notes from Yesterday

For the second day in a row, Kate got up on her own, this time about 10:25. She didn’t shower, so we made it to Panera shortly after 11:00. She was in a very cheerful mood. On the way to Panera, she whispered, “Tell me your full name.” That is the first time I recall her whispering in the car. She does it periodically at home. I’m not sure why. I suspect it is because she either thinks we have guests in the house or that we are staying in someone else’s home.

At lunch, she said, “What’s the name of this restaurant?” I told her, “Applebee’s.” In the next few minutes she asked two other times. The last time she said, “I know I’ve asked you before. I should remember that.” I said, “That’s all right. You can ask as many times as you want.” Then she asked my name. I told her and reminded her we have been married 55 years. She said, “Do we have children?” I told her we do, and she asked their names. I am no longer surprised at these conversations. They happen every day. I am just happy that she is able to ask so naturally without being too self-conscious about it. That is so much better than those moments when she is completely disoriented and has an attack of anxiety.

Following the experience we had last night, we spent some time in the family room. When I was ready to take my shower, Kate told me she was getting tired and having a little trouble with her puzzles. I told her I would put on some music in our bedroom, and she could get ready for bed. I brought her a night gown and put it on the bed. She was unsure of what she should do and asked, “What do I do now?” I told her to take off her clothes and put on her gown. She was still confused. I walked her through each step. When we were finished, she said, “I am glad I have you. I know that if something goes wrong, I know you will take care of it.” I definitely feel appreciated. I know that some caregivers work faithfully and don’t hear words like that. That’s another reason to be grateful.