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When you run into a problem, you use whatever skills you have to solve it.

Kate and I stopped for lunch before our visit with Ellen. Shortly before we left the restaurant, she went to the restroom. Knowing she wouldn’t remember where we were sitting, I kept watching for her to come out. As I might have expected, she took a wrong turn to get back to our table. I saw her approach the entrance to the kitchen and thought she was going to ask for help. I got up from our table and walked toward her. She was talking with one of the employees. Before I reached them, they had turned and started walking back to the restroom. Kate saw me and said she would be right back.

I returned to the table and waited. All the while, I was wondering what had happened in the ladies room. I thought perhaps something wasn’t working or that Kate might have broken something. In a few minutes, Kate and the employee walked over to me. Kate said, “She is going to tell you something that I want to remember.” The employee told me that Kate had seen a quote by Eleanor Roosevelt that said, “A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” Kate just beamed and said, “Isn’t that a great quote. Now make sure you remember that.” Kate thanked the employee and asked her to say it one more time.

As we walked out I saw the employee and went over to thank her myself and let her know about Kate. She was a very compassionate woman and had already guessed. Kate walked over and gave her a hug. It was one of those moments that hit me once in a while. Tears instantly welled up in my eyes, and we said goodbye.

As we continued our drive to Ellen’s, I thought more about Kate’s predicament. She saw the quote and must have read it several times. She wanted to remember it, but finally had to recognize that she couldn’t. She knew she couldn’t take me into the ladies room to read it and remember it. What does one do when caught like this? If its really important, you have to ask for help. She did just that, and she hit the jackpot. She found a caring person who was not just willing to help but to do so in such a sensitive manner.

I am also reminded of John Zeisel’s book, I’m Still Here. He makes the point that although the person with dementia may lose some abilities, they retain others for a long time. Kate is well into her journey. It’s over seven years since the diagnosis. By my own judgment, she is well into Stage 6 of the seven-stage model. Nonetheless, she retains amazing skills in casual social interactions. She has amazing insights about me and many social situations. In addition, she works hard to solve problems that would not have been problems before Alzheimer’s, like putting clothes on. It’s a challenge to distinguish the front and back of most of the tops she wears. Often when I start to help her, she stops me. She wants to do it herself. The saddest thing of all is when she has to give in and ask me for help. I’m beginning to think more about Eleanor Roosevelt’s quote about women and tea bags. Kate is in “hot water,” and she’s showing just how strong she is.

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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.

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Is it better to know or not to know?

I am currently reading (that is, listening) to The Inheritance by Niki Kapsambelis. It is a fascinating account of two true stories. One is about the efforts of medical researchers to understand Alzheimer’s and uncover a way to prevent and/or cure it. The other is about a family that has experienced the disease over several generations. The part I read this morning deals with the family members’ opportunity to be tested for the gene that is the carrier for the disease. Most of the family chose to know. Others did not. What do you think you would do?

This question led to my reflecting on our decision to find out if Kate’s symptoms were just part of normal aging or if she had Alzheimer’s. Too much time has passed for me to recall clearly when we started asking ourselves that question or exactly how each of us felt about it. I do remember that Kate wanted to know. I also recall that I didn’t have the same desire. Knowing how little there is that one can do to change the ultimate outcome of the disease, I believed we could just go on living our lives as fully as possible.

I recall that by the time we initiated the process for her to be tested, we were pretty sure, but not confident, that she had dementia. Kate had been the first to notice the symptoms five or six years before. I began to notice more after she had mentioned her fear that she might have Alzheimer’s. We seem to have reached the decision to find out at the same time.

When her doctor gave us the results of her PET scan, Kate said she was relieved to know. I remember that she accepted the diagnosis quite calmly. I can’t say the same for me. Immediately, I felt a deep sense of sadness. I choked up. The doctor handed me a tissue to wipe the tears. You might think that if we were already prepared for the answer the doctor delivered to us, I would have responded more like Kate. In retrospect, I think we both responded in ways that are consistent with our personalities. I remember our daughter’s having a bicycle accident when she was twelve or thirteen. As we were with her in the emergency room, it was Kate who was as steady as a rock. I don’t know that I showed it on the outside, but I was a wreck on the inside.

The impact of the news wasn’t limited to that moment. Kate remained calm, but the news did take its toll on her for a short period of time after that. We talked talked a good bit in the weeks that followed. We talked about the implications and how we should respond. When should we tell our children? Our extended family? Our friends?

It wasn’t long until we began to realize that there really was no impact on our day-to-day lives. We began to feel the way we did before the diagnosis, but, for me, the impact has remained as a central part of my life. I made an abrupt change in the way I responded to her forgetfulness and other symptoms of her illness. Now I understood why she was doing so many of the things she did. I became a more understanding husband.

I tend to be a planner and quickly went into planning mode. As her caregiver, I haven’t stopped yet. The plans are always changing as necessity demands. I believe that getting the diagnosis was the right thing for us. Knowing was the catalyst for our taking advantage of our time together. We thought we were already doing that, but the diagnosis caused us to shift into high gear. That is how we plan to live as long as we are able.

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Both of Us Are Adapting

As the year ends, we are experiencing some things that are just like they were a year ago. That is, most of Kate’s symptoms are very similar to a year ago. There are, however, two differences. The first is not surprising, but it bothers me. Her memory is clearly worse. Second, she and I are both adapting pretty well to the changes that we have experienced not only this year but the preceding seven years since her diagnosis. Let me give a quick example that occurred this afternoon.

Apart from our routine daily events, Panera, lunch, and dinner, the only thing on our agenda was a birthday drop-in for a woman with whom we sit at Casa Bella for their musical events. She was 93 yesterday. The drop-in was between 2:00 and 5:00. We returned home from lunch shortly before 2:00. My intention was to be at the party around 3:00 but with no firm time. As we got out of the car, Kate asked, “What can I do?” I told her we would be leaving for the party in about forty minutes and that she could work on her iPad for a while or go outside for a short time before getting dressed for the party. She had forgotten about the party. I had told her multiple times including just before we got home. She chose to go outside. It is like a magnet for her.

I let her stay outside for about thirty minutes. Then I called her in to get dressed. She came in right away, something that is new over the past year or so. I walked to her room with her and showed her some clothes that I had picked out for the party. She liked what I had chosen and started to get ready as I left the room. In a few minutes, I went back to our bedroom where I found her dressed in the same clothes she had been wearing. I mentioned the party and told her she hadn’t put on the clothes I picked out. She had forgotten the party again. She didn’t remember any clothes I had picked out. She followed me back to her room where she had thrown her top on a chair and the pants on the floor. She had put her sweater back in the closet.

This time she put on the clothes I had picked out. More significantly, from the standpoint of a change in her is that she very happily accepted my suggested clothes and put them on. In the distant past, she would have asserted her independence. As the year closes, I find that she commonly accepts my suggested changes in her clothes when I think it appropriate, now. This surely makes things easier for me. As I have noted before, though, this comes at a cost because I know that her increasing dependence is associated with the progression of her Alzheimer’s. I don’t like to see that.

I, too, have adapted over the course of Kate’s illness. I now do a better job of not fretting about her wearing good clothes to work in the yard, or to wear clothes that are somewhat soiled, or to avoid any rigid time constraints. All of these things have helped us handle our situation with a minimum of frustration. I emphasize “minimum.” It would be next to impossible to avoid all frustration. I am glad to say that my sense of frustration is a very minor aspect of my feelings. I find that sadness for Kate and for our relationship is a much bigger emotional issue.

The year has been marked by highs and lows. I haven’t gone back to read my posts from the past few months, but I believe I was in a more upbeat mood several months ago. I sense that as the year closes, I am less upbeat as I consider that the latter stages of her illness appear closer and closer.

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The Sitter is Still Working Out

Today was the first time we have had a sitter since before Christmas. We had missed three days while we were in Texas. I wondered if this would present a problem for Kate. I should not have worried. When the sitter arrived, Kate saw her pull into the garage as she (Kate) was about to go outside. She said, “Who is that?” I said, “That’s Mary. She is going to be here while I go to the Y.” Kate greeted Mary warmly as she entered the door. They both went outside while I got a few last-minute things taken care of before leaving. As I drove down the driveway to the street, I stopped where Kate was standing in a flower bed with Mary. She (Kate) asked where I was going. I told her the Y. Then she pointed to Mary, smiled, and said, “She’s my guard. I can’t get into any trouble.” I waved goodbye. Once again, I felt good that the sitter is working out as I had hoped.

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It’s Beginning To Look A “Little” Like Christmas

Like everyone else Christmas is a special season of the year for Kate and me. We used to do all the things that usually accompany the season. Kate always loved these things, decorating the house, shopping for just the right gifts, and sending Christmas cards. Over the years, we have done less. Sending Christmas cards was the first thing to go. I don’t recall exactly when that happened. I am reasonably sure it preceded Kate’s diagnosis. Come to think of it, that might have been one of the earliest signs of her AD. I do know that it was things like that that caused me to recognize she was making changes that didn’t match her long-standing personality.

Since the diagnosis, decorating the house had become a priority only when we were entertaining during the Christmas season. We gave up hosting any Christmas events several years ago. For several Christmases, we have done next to no decorating. It was never something that I had been actively involved with. My responsibility was the tree and in the past four or five years an additional tree in the front yard. Our area garden club sponsors an annual Christmas tree sale and encourages everyone to put a Christmas tree in our front yards near the street. Apart from that and a wreath, I don’t think we put up any decorations last year. I know we haven’t had a real tree for a while.

This year, I felt like I should take the lead and do a little more. First, I tried to convince Kate to help by locating our decorations and going with me to buy a few things. She wasn’t interested; so I took care of this myself. I bought a new wreath and put it on the front door. I bought some red bows and ribbons and attached them to some greenery and put one in each of the windows on the front of the house. Yesterday afternoon, I also put up the outdoor tree and the lights. I located a small artificial tabletop tree for a table in the family room. I found several hangers for the mantel. Now if I can only find the stockings, we’ll be set. Years ago, Kate had bought a 3-foot Santa that she has always placed in the family room. I have done that. This is only a tenth of what Kate used to do, but it is something, and we plan to enjoy the Christmas season. We would have done that anyway, but I am thinking this may be the last Christmas that Kate will be able to appreciate. I’d like it to look a little like Christmas.

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It Helps To Be Flexible

Many times I have remarked how fortunate Kate and I have been throughout this journey. I hope you have also been able to tell that that doesn’t mean we don’t face many of the same challenges that others are having. Caring for someone with AD always requires daily adjustments. For example, Kate and I got home from Panera about 10:15. As usual, she asked if she could “pick a few leaves” and then asked me where she should start, the back or the front. Usually, I just say wherever you want. This time I said, “Why don’t you start along the driveway.” We came inside. She brushed her teeth and then went directly to the back yard instead of the driveway. Of course, this was no problem because it doesn’t make any difference to me where she works in the yard. It’s just an illustration of the everyday things that occur because her memory is gone.

I should add that we are going to a Christmas special at the Flat Rock Playhouse this afternoon. Although this won’t be a “dress up” affair, I didn’t want her to mess up her clothes working outside. I didn’t mention this to her because I knew she wouldn’t be able to remember it. As we were approaching the time for us to leave for lunch, I looked out back and saw that she was sitting in a flower bed pulling up weeds. I knew that meant a change of clothes. It also mean adjusting our time schedule by going to lunch a little later. This didn’t bother me because I had already thought about going straight to Flat Rock from the restaurant. It worked out fine.

I relate this incident because it so illustrative of what happens everyday. As someone who has OCD tendencies, I generally follow through on my plans once they are made, but that doesn’t work with someone who has dementia. The result is that I often find that we start on one plan and shift to another before we even take the first step. It really pays to be flexible.

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Another Positive Experience With The Sitter

This morning I finally woke Kate at 11:00. It took her over an hour to get ready to leave for lunch; so that meant we didn’t have as much time as I would have liked before Anita, the sitter, was scheduled to arrive at home. Rather than rush Kate, I decided to call Anita and ask her to meet us at Panera where we were having lunch. That worked out well. That allowed me to leave and go back to the house to get ready for the Y. Kate and Anita stayed at Panera.

Once again, I am finding that four hours is not a lot of time when I go to the Y. After exercising, I met Mark Harrington for coffee. He is my technology guru and has handled the technical aspect of this website. We try to get together once a week. When we parted, I dropped by the ATM for some cash. Then my four hours was just about up.

When I arrived at home, Kate was sitting in a flower bed behind the house as she cleaned out some of the weeds. Anita told me they had taken a drive after leaving Panera. They had gone across town to Krispy Kreme. When they got back home, she said Kate went straight to the back yard. They had had a full afternoon themselves.

As Anita was about to leave, I thanked her. Kate quickly chimed in and said, “I’m the one who should be thanking you.” Then she walked over to Anita and gave her a hug. I never imagined things would go so well. It makes me happy.

After Anita was gone, I said, “So you went to Krispy Kreme.” Kate gave me a strange look. It was obvious that she didn’t remember going there.

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Flexibility Required

2017-10-21 (5:39 pm)

We’ve had a nice day. We made another visit to Sadie’s café for a cranberry scone and a large slice of pound cake, one of my favorites. We were there for about an hour before coming back to the hotel for another hour. As we were leaving the hotel room, Kate said, “Haywood Park.” I knew she was trying to show me that she recalled the name of our hotel. Of course, it was wrong again. I didn’t say anything, but the look on my face must have given away my thoughts. She said, “That’s not right?” I shook my head and told her it was the Hilton. She accepted it without a problem.

We met our son, his wife, their son as well as Kate’s brother, Ken and his wife, Virginia, at our favorite BBQ place for lunch. It was good to see each of them. We had seen our son in September, but it had been June since we had seen the others. It was especially nice to see our grandson who is now a freshman at TCU.

At lunch, we learned that the powers that be had decided to “stripe” the stadium by having people in certain sections wear black shirts while others wore gold, the University’s school colors. The section in which we were to sit was asked to wear black, and we didn’t have black shirts. To rectify this, we stopped by a shop and bought black golf shirts with the WF embroidered in gold on the front.

We got back to the hotel where Kate wanted to rest. It wasn’t too long before she wanted to get out of the room. This, as I may have said before, is not unusual. I suggested we go to Panera where we are planning to meet Ken and Virginia in the morning. Just before 5:00, I suggested we go back to the hotel before leaving for the football game at 5:30 or shortly thereafter.

When we got back to the hotel, we discovered that all the parking spaces were occupied. We ended up parking on the street about a block from the hotel. As we did this, I noticed a lineup of buses with TCU colors. It appeared that they were going to the stadium. I thought this was fortuitous as I didn’t really want to drive the car to the stadium and fight the traffic. I checked and learned that it is a free shuttle service to and back from the stadium.

Then we walked back to the room where Kate had wanted to rest before leaving for the stadium. We hadn’t taken but a few steps when she said, “Do we have to go to the game?” I hesitated a moment and said we didn’t have to go but that I had wanted to go. We tossed this around a few minutes, and I decided it was better not to push her even though she had said she would go. We came back to the room where I sent a text to our son and his wife informing them of our decision. Then I took our tickets to the front desk of the hotel and asked the man behind the desk if he knew someone who might like the tickets. He did.

The truth is that I didn’t have my heart set on the game at all. I did believe it would have been nice to be with our son and his wife for the game. It was that experience and not the game itself that was important to me. I also have to confess that I’m the kind of person who makes plans and then follows through on them. Thus, it requires a good bit of adaptability to decide not to go to a game for which we bought tickets a couple of months ago, bought shirts for a few hours ago, and came back from Panera to get ready to go to the game an hour ago. On the other hand, it illustrates two things I believe are relevant. The first is that living with Alzheimer’s involves lot of changes in plans. Second, it illustrates the importance of adaptability. If I were less adaptable, I would be miserable. As it is, I am disappointed, but I understand the need for the change. I feel for people who have more difficulty making this kind of change.

 

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Travel, Confusion, and Learning How to Address It

Kate came into the living area of the suite to which we had been upgraded. She looked very groggy and confused. I asked her if I could help her. She gave me a confused look. Then I took a more direct approach that is not like me. I said, “Let me tell you where we are. We are at the Haywood Park Hotel in Asheville, North Carolina.” She said, “Oh, yeah.” I went on to tell her that we were going back home this morning and that we had no time schedule to meet. That seemed to satisfy her. Then she asked, “Can I rest a little?” I told her that would be fine. Then she said, “If I can find where to go.” I said, “Let me show you.” Then I walked her to the bedroom.

I find that I am always learning and changing the way I approach things with Kate. My normal style is not to be abrupt or too directive. I know she does not like to be controlled. There are times like this one, however, when she is disoriented or in need of direction. In this kind of situation, I have learned enough to know that she won’t realize where she is when she wakes up when we are traveling. I can make things easier for her by simply telling her and not acting as though she does know.

Three weeks from tomorrow we leave for Texas where we will spend a week visiting family and friends. I will need to remember how important it is to provide regular information of where we are, what we are doing, etc. in order to maintain her comfort level in strange surroundings. This is more difficult than it sounds. It is amazing how easy it is to fall back on the way I have related to her over the course of our marriage. In so many respects, she continues to appear quite normal, even to me. That makes me want to respond to her in the way I would have before her diagnosis.