Posted on

The Day Kate Was Diagnosed With Alzheimer’s

Today is a day that is hard for me to forget. It was eight years ago that Kate was diagnosed with Alzheimer’s. I just finished a quick look at the posts I made during the first ten days after that. (http://livingwithalzheimers.com/the-diagnosis-and-following-ten-days/) At that time we were experiencing all the emotions that surround such news. Kate was initially relieved but very quickly became scared and also angry.  Fortunately, neither of the latter two emotions was long-lasting. Although we were not surprised with the doctor’s news, the reality shook us. We had to sort through those emotions and figure out how to move forward.

At that time the future seemed very blurry. We were simply trying to grasp the diagnosis. We experienced a lot of feelings. We talked about the diagnosis and our future and tried to understand its implications. We couldn’t escape thinking about all the negatives that go along with the disease.

One of the things that struck me was how quickly we went into planning mode. We have been there ever since. That’s not because our plans were wrong. It’s because the situation is always changing and requires answers to new questions or problems. Our initial plans focused on two general areas. First, we needed to address legal and financial issues. That meant meeting with our attorney, accountant, and insurance man. Second, we wanted a plan for our lives in order to take advantage of whatever quality time we had. Somewhere along the way we will probably discover things we overlooked, but that foundation has served us well so far. I thought we would have far less time for living than we have. I never expected that we would be getting along so well after eight years. That is largely because I didn’t understand how much pleasure we could have after Kate’s memory was almost gone.

As we thought about the things we wanted to do, we gravitated to the things we already enjoyed. That included music, theater, travel, and time with family and friends. Each of these has played a significant role in our “therapy.” What is even better is that we are still able to enjoy most of the things that have led to a very happy marriage.

Looking back, I am glad that we responded actively and not passively. At this moment in 2019, I realize how much life we can enjoy while “Living with Alzheimer’s.” I still don’t know how long our good times will last. I know that the time is diminishing rapidly now. We stopped all major travel in January 2016. We made what may have been our last trips to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas. Movies are almost a thing of the past. I sense that non-musical theater and opera are on the way out. Music and social occasions like dining out play an even larger role in our lives now, but Kate’s sleeping late has cut down on our morning social engagement at Panera and our afternoons at Barnes & Noble. I plan to continue our day trips to visit friends as long as we are able. I don’t see anything that would stop that right now.

I can’t help feeling sad as I watch Kate change and imagine what lies ahead. I also recognize that our own experience with Alzheimer’s has been far better than that of most others. The past eight years are among the best of our marriage. I am grateful for that. I also feel a strong sense of determination to see that we make the best of the future no matter what it may bring.

Posted on

A Day of Confusion

For the second time this week Kate did not recognize me when she woke up. These occurrences come only days after my saying that she almost always recognizes me as someone she knows and trusts. That is still true, but it makes me question my optimism as to how long this will last.

As I have seen so often, this failure to recognize me came with a mixture of other signs that she sensed more familiarity than her rational ability could express. She didn’t display any sense of surprise when I walked into the room. She appeared to respond to me as she normally does. Then she said, “Who are you?” I said, “Do you recognize me at all?” She said she didn’t, and I gave her my name and told her I am her husband.” She seemed more puzzled than usual by this news. She didn’t recognize either my name or that I am her husband.

At that point, I decided not to make this a point of discussion. I was confident that with a little time she would put it all together. I suggested that she get up and let me take her to lunch. She responded the way she always does and got up. She let me help her dress. She went to brush her teeth, and I went to the kitchen. In a few minutes, I heard her say, “Hey, where are you?” That, too, is very normal. She doesn’t know her way around the house and looks to me to tell her where she should go. As I walked toward the family room, I said, “I’m in the kitchen.” She was standing in the doorway coming into the family room from our bedroom and saw me. We went back to the kitchen where I had her morning meds waiting for her. When she had taken them, I picked up our iPads and cups and we left for lunch at Panera.

While waiting for our order, she asked my name. I told her and said, “I am your husband.” She seemed puzzled and asked how long we had been married. I told her. She didn’t question me. Instead, she asked me her name. That led to her asking if we have children. When I told her, she wanted to know their names. That led to further conversation about our marriage. I told her we had had many good times during our marriage. She agreed and asked me to tell her some of them. After that, I didn’t see any obvious signs that she didn’t know me.

We stayed at Panera about an hour and a half and then returned home where Kate rested almost two hours. Then we went back to dealership to pick up my car that I left the other day. When the service rep walked us to our car, I walked directly to my side. Normally, I would have opened the door for Kate and helped her get settled in with her seat belt. Before I got in the car, I looked back and she was standing at the rear of the car waiting for me to tell her where to go. It is very common for her not to know which side of the car she should use. I know this but had fallen down on the job. I walked her to the passenger’s door. Once she had gotten in she didn’t know where to put her cup. The service rep was waiting for me at the driver’s door. She is the same one I had given my first “Alzheimer’s card” two days before. If I hadn’t already given her one, I would have this time. There was no need now. She understood.

Last night was Broadway night at Casa Bella. Kate’s confusion continued. She was seated beside the woman whose mother started the restaurant almost 79 years ago. We sit with Signora Rizzo and her husband for all the music nights. We hadn’t been there too long before Kate leaned over to the Signora and said, “What’s the name of this restaurant?” Everyone at the table is aware of Kate’s diagnosis, and Signora Rizzo responded beautifully. She told Kate the name of the restaurant and that her mother had started it. She also gave her a little of the restaurant’s history. Kate was surprised and interested in what she had to say.

I’m not sure why, but it took longer to get our meals last night. Several times after we had ordered, Kate asked me if we had ordered and when we were going to eat. Finally, she said, “Does this place serve food?” Signore Rizzo, who was seated beside me, said, “I was wondering the same thing, Kate.” We have always enjoyed sitting with this couple. The way each of them responded to Kate last night is consistent with the kind of people they are. I hope we have many more music nights together.

These little public incidents of Kate’s confusion are trivial. No one was embarrassed or disturbed, but they do make me wonder what lies ahead.

Posted on

Does Kate know me or not?

In my previous post, I focused on the inaccuracy of our stereotypes (generalizations) of people with dementia. In this post I am specifically thinking about caregivers and the conclusions we reach about the behavior of our loved ones. Many of those situations involve a judgment about things like what stage of the disease the PWD has reached, what she is able to do, and can she be left alone. Last spring, I was trying to draw a conclusion about Kate’s sleeping later in the morning. I wasn’t sure whether that represented a few isolated discrepancies from her previous sleeping pattern or the beginning of a new stage of her disease. After months, I finally recognized that she was, and still is, making a real change.

One of the judgments that caregivers frequently make involves what their loved one knows. It hasn’t happened recently, but I’ve been asked if Kate still knows me. That’s a good question. It’s one that seems to imply that she either knows or doesn’t know me. The best answer I can give right now is that “sometimes she does and sometimes she doesn’t,” but that doesn’t tell the whole story. Let’s take an example of something that happened at lunch a couple of days ago.

When she got up that day, her conversation suggested that she knew me. She didn’t ask my name or relationship, and she behaved in a manner that is consistent with the way she has behaved toward me for years. At lunch, we talked about our children. I presumed that, at that moment, she knew I was her husband. Moments later she said, “Who are you?” I asked her if she meant my name or my relationship to her. She said, “Your name first.” When I told her, she said, “And what are you to me?” I said, “I’m your husband.” Then she asked me to tell her my “full name.” I said, “Richard Lee Creighton.” She tried to repeat it, but only got the first name. She asked me again. Over the next few minutes, she asked a few other times. Once she asked her own name.

In most ways this experience was like many others we have had. In this particular instance, however, I was struck by how blurry the line between knowing and not knowing can be. As usual, I was also amazed at how comfortable she is when she repeatedly asks my name and her own. She displays no sense of hesitation about asking nor does she seem concerned that I might think it strange when she asks. She asks the way she would ask a stranger’s name. At the same time, her words and manner of relating to me suggest she knows me. I feel certain that is the way an observer at another table would have interpreted the situation.

I try not to quiz her too much about what she “knows,” but earlier this week I did. She asked my name and relationship. I told her, and then I said, “Tell me this. You didn’t know my name or that I am your husband, but you did seem to feel that I am someone you know. Is that right?” She said, “Yes, of course.” I didn’t push for any more. As I have surmised on other occasions, she usually recognizes that I am someone with whom she is familiar and someone with whom she is comfortable. It’s just that she sometimes doesn’t remember my name or our relationship.

After living with changes like this for a while, I would say there are different levels of knowing. One is to know my name. Another is to know that I am her husband. Another is to know that I am someone she recognizes. If I were to guess right now, I would say that (1) she usually doesn’t know my name, (2) about half the time she knows I am her husband, and (3) she almost always recognizes me as someone she knows and trusts.

Prior to six months ago, I believe she always knew my name and that I am her husband. She’s made a significant change in that time period. I suspect the next six months will bring more dramatic changes, but I expect she will continue to recognize me as someone she knows and trusts for some time to come, at least that is what I am hoping. I’m also beginning to think of that as the deepest kind of knowing. It’s similar to what we felt when we first met. We didn’t know anything about each other, but our intuitive abilities led us to sense a connection. That is something I don’t want to lose.

Posted on

Sleep and No Sleep

Kate’s sleeping continued to have an impact on our schedule yesterday and early this morning. I wasn’t too surprised when she got up earlier yesterday. It was around 10:00. She got up and showered and then went back to bed. When she goes back to bed like this, she doesn’t usually go back to sleep. Most of the time she just relaxes and runs her fingers through her hair. That is what she did yesterday. Had I let her, she might have stayed in bed too long for us to have lunch together. I didn’t want that, so I got her up and dressed. She was a bit more assertive about her independence getting dressed but had to ask for help several times. Our timing worked out well. Without rushing, we were able to get to lunch and back home about fifteen minutes before Mary arrived.

When we got home, Kate followed me to the bedroom and got in bed just as she had done the day before. That gave me a few minutes to talk with Mary before I left. She told me that Kate didn’t want to get up the last time she was here and that she (Mary) didn’t want to push her too hard. I told her she did the right thing although I regretted that it was 3:15 before she got up.

I walked Mary back to the bedroom before I left and told Kate I was going to the Y. She gave Mary a warm greeting. When I returned, they were talking in the family room. I didn’t have time to talk privately with Mary, but I got the impression that Kate had rested most of the time I was gone.

Around 3:00 this morning, Kate said, “Hey.” I said good morning and told her the time and that she still had a good bit of time to sleep. We didn’t talk much, but I could tell she was awake about an hour.

At 4:30, she got up to go to the bathroom. She got back in bed about twenty minutes later. That put me pretty close to the time I feel comfortable getting up. Having been mostly awake since 3:00, I decided to sleep a little longer and got up an hour later.

Apart from the way her sleep has changed our routine, we had a good time together. She did tease me a little after getting up yesterday morning, but it wasn’t mean-spirited at all. So we enjoyed the day. We just had less time together.

I don’t know what to expect for today. Will she get up early again because of all the sleep she got yesterday, or will she sleep late because she lost a couple of hours sleep during the night? I’m guessing it will be the latter. Fortunately, we have no special commitments. My only concern will be getting something to eat before noon. I have some granola I can snack on to hold me over until she is up.

Posted on

The (Daily?) Report on Sleep and More

Each day seems to give me added reason to believe that Kate is noticeably drifting into another stage of her Alzheimer’s. That’s been true the past two days. As I had suspected, she got up earlier two days ago (Monday). I was in the kitchen when she walked in at 9:25. She didn’t say a word. She just looked at me. I said good morning and asked if I could help her. She said, “I want to take a shower.”  I got up from my chair and gave her a hug. Then I took her hand and told her I would take her to the shower. Like a little child with her parent, she held my hand until we reached the bathroom. Then she wanted me to tell her exactly what to do. I left her in the shower. I checked on her in another fifteen minutes and found that she was back in bed.

Since the sitter was coming at noon, I decided to let her rest a little longer. I got her up over an hour later. That gave me enough time to have her dressed for lunch. I called the agency and asked them to have Valorie meet us at Panera. The timing worked out well. Valorie arrived right after I had ordered Kate’s meal. Although I am sure Kate did not remember her, she gave her a warm welcome, and I left while they waited for Kate’s lunch to be ready.

Even though I had let her rest another hour, having gotten up earlier that morning caught up with her during the afternoon. She was resting in a chair in the family room when I got home at 3:30. Valorie said she had not been resting long, but Kate did not acknowledge me when I came in the room or after Valorie had left. I went over to speak to her. She was awake but tired. After a while, I asked if she would like to lie down on the sofa. She did and continued resting for another two hours.

As in the past, I wondered if she would be able to go to sleep at her regular time that night. At 9:30, she was enjoying working puzzles on the iPad and didn’t want to go to bed. She did, however, accept my suggestion that it might be better to go to bed so that she wouldn’t sleep so late yesterday.

I let her sleep undisturbed until 11:00 yesterday when I turned on some choral music that she likes. At 11:15, I went to her bedside and sat down. She silently acknowledged my presence with her eyes. I asked if she were ready to get up. She nodded that she was not. Then I said, “Your husband would like to take you to lunch.” She said, “You’re not my husband. I wouldn’t marry you.” I can’t remember exactly what she said after that, but it was something that made me think she thought I was Frank Sinatra. I didn’t push her on this. I asked again about getting up. She said, “I’m not getting up.” Then I brought up lunch again, and she said she would like to eat. I told her I would help her get up and dressed. To my surprise, she accepted that. My only explanation is that she is getting used to doing what I suggested and did it reflexively.

Once she was up and dressed, she was in a talkative mood. She teased me (a bit harshly) as we were about to leave for lunch and in the car. Once inside the restaurant, we were greeted by one of our regular servers whom we hadn’t seen in several weeks. We chatted with her as we ordered our meal. I think that changed Kate’s tone a bit. We had a very nice conversation at lunch. During much of the time, I was trying to explain to Kate something I had said or something that the server and I had talked about. Some of our conversation had to do with music. The music on the restaurant’s sound system was strikingly different today. It was mostly 50s music. Kate and I recognized almost every song.

After lunch, we went to Best Buy to return a DVD player that I bought a couple of months ago. It is a different brand than the Samsung TV to which I have had it hooked up. It had never operated as smoothly as the Samsung player we had previously. The trip to Best Buy turned out to be another social occasion. Kate was in a playful mood and talkative.

When we went to the customer service counter, I noticed that the man in front of me was returning one SONOS audio speaker for a SONOS subwoofer. I also have a SONOS system and mentioned that to him. That led to a conversation about our experiences with it. As he finished up his transaction, Kate went over to him and put her hand on his shoulder, pointed to me, and said, “I should have warned you about him. He just talks and talks.” After he left and I was explaining why I was there to the woman behind the counter, she got involved in a conversation with the young man behind us. I didn’t catch all that was said, but she was joking with him, probably about me.

When I was finished, I went to the back of the store where the DVD players are located. I got a salesman right away and told him what I wanted. He led me to it, and we quickly took care of the transaction. As we started to walk away from him, I saw the display of SONOS equipment. I mentioned my audio system. Kate then went over to him and said, “Don’t let him get into this. He will talk all day.”

On the way out we walked past a display of baby monitors. I’ve been thinking about buying something like that to monitor Kate in the morning while I am in the kitchen and stopped to look. Kate had no interest in the monitors, but there were two large photos of babies behind the monitors. She loved them and commented on their beautiful smiles. A moment later, we passed by a life-size cardboard display of a man. She stopped and said goodbye to the man in a way that was very typical of a small child.

When we got home, Kate walked directly to the bed, got in, and pulled the covers over her. She remained in bed for over two and a half hours before I went into the bedroom to see if she was ready to get up. When I sat down on the bed, she looked up at me. I told her we would be leaving for dinner in forty-five minutes and asked if she were ready to get up. She indicated she wasn’t. I told her I would let her rest a little longer and would get her up for dinner. She said, “Good.” This was the first time I had let her rest so long. This meant that she had been up only three and a half hours all day.

As promised, I went back a short time later and got her up. We had nice dinner. As she often does, she said she would probably “crash” when she got home. She didn’t, but she did get to bed at 9:45. That is pretty typical. The question now is what time she will get up this morning. This is another day for the sitter. I hope she will be up in time for us to have lunch before Mary arrives. If not, I’ll let Mary take care of everything.

Sleeping late has made a significant difference in our daily morning routine. I can’t help wondering if we are moving toward a similar change in our afternoons. Just as we have seen a dramatic decrease in the number of visits we make to Panera in the morning, we are beginning to go less often to Barnes & Noble in the afternoon. Our lives are changing.

Posted on

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.

Posted on

The Beginning of a New Year

I let Kate sleep until almost 12:45 yesterday. She was sleeping soundly when I woke her. She smiled and waved. I sat down on the bed and told her I would like to take her to lunch. She said she would like that. When I gave her my hand to help her up, she said, “What’s your name?” I told her, and she asked me to repeat it. She said, “Where are my clothes?” I told her they were on the chair in front of her but suggested she might want to shower first. She asked where the shower is. I took her by the hand and walked her to the bathroom. On the way I said, “Today is Virginia Franklin’s birthday.” She looked puzzled and said, “Who’s that?” I said, “She is Ken’s wife.” She said, “Who is he?” I said, “He is your brother?” She said, “What’s his last name?” I told her. Then she asked, “Who am I?” I told her. When we walked into the bathroom, she asked again, “What is my name?” I turned the shower on for her. When she got in, she said it felt good. Then she said, “I’m awake now.” And she looked and sounded like it.

I left her in the shower and told her she could call me if she needed any help with her clothes. She said, “Why should I need help?” I told her I would put her clothes on the bed by my chair where she usually sits after her shower. In a little while, I went back to check on her. She was in bed running her fingers through her hair. I told her it was 1:30 and that she might like to get ready for lunch. She asked about her clothes. She had bundled them up and thrown them toward the end of the bed. Without asking, I proceeded to get each item of clothing for her. I gave her the opportunity to dress herself. She said she wanted to do it herself, but she kept asking for my help. When she was dressed, she wanted me to brush her hair.

When she was ready, she decided to make up the bed. She had completed one side and asked me to do the other side. I noticed that she had pulled the spread over the bed without pulling up and straightening the top sheet. She was about to put one of several pillows at the head of the bed when I told her I wanted to straighten the top sheet. After I had done that, she picked up a pillow and started to put it on the bed. Then she asked me if that was the way it should be placed. I told her there was a larger pillow that would go on first. She picked it up and placed it. Then she asked if that was the right way. This was one of those little things that happen so often. It struck me that she no longer knew how to arrange the pillows. She had been very particular about that. The large pillows have birds in flight on them. I used to place them the wrong way. She would always correct me. Now she was having to depend on me. She used to make up the bed every day. I remember when she would say, “My mother always said you should make up the bed first thing after you get up.” Three or four years after her diagnosis she rarely made up the bed. I’m not sure what happened, but she started again a couple of years ago. She hasn’t done it as well as she did before, but she does her best. It’s just a little thing, but there are so many of them now.

At dinner, I mentioned something about our having so many good experiences during our marriage. Kate immediately said, “Tell me three things.” Just as quickly, I said, “We had two great children.” She said, “Who are they?” I gave her their names and then went on to some of our travel experiences including our spending a summer in Cali, Colombia when the children were seven and five. That prompted her to talk about giving children experiences that broaden their lives without spoiling them. She felt we had been able to accomplish that.

As we left for home, she said she was very tired and might go to bed shortly after we got there. Then she said, “It may be a little early for bed. I agreed. Then she said, “I can depend on you to help me know what to do.” Then she went into a familiar topic about how comfortable she feels with me. She is beginning to seem more like a little child talking to her parent.

When we got home, she wanted to follow me to the back of the house. She wanted to use the bathroom but didn’t know where to find it. A few minutes later, she used her hand signals to ask if she should sit in her chair in our bedroom where I had put her iPad. I nodded “yes.” It wasn’t long before I said, “I’m glad your my wife.” She responded sternly saying, “I’m not a wife.” I said, “What would you say you are to me?” She said, “A close friend.”

None of these things is new, but it had been a day filled with confusion. It wasn’t like this one year ago.

Posted on

Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.

Posted on

Merry Christmas

It’s Christmas morning, and I am thinking about all the households with young children who have been up for hours and eagerly unwrapping packages. Those are great moments to treasure. They don’t last forever. The children often sleep a little later as they get older. Life changes for all of us as we age. We don’t celebrate the season in the same way we did when we were younger.

One thing doesn’t change. We still have our memories of Christmas. I remember getting my Red Ryder BB Rifle when I was about nine or ten years old. It’s hard for me to believe that my parents allowed me to play with it around the neighborhood at that age. I also remember being excited over the Schwinn Black Phantom I received when I was twelve or thirteen. Those were among my most special Christmas gifts as a child.

The memories of the Christmas season that mean the most to me these days are the ones that Kate and I have shared. We had our first date on December 19, 1961. We went to a performance of Handel’s Messiah. December 19, 1962, we became engaged. On Christmas day six days later, we announced our engagement to Kate’s extended family at the family Christmas gathering at Kate’s home.

Over the years, we have enjoyed the season in different ways and in different places. We spent our first Christmas together with a trip to my home in West Palm Beach. That was Kate’s first time there. We spent our only Christmas alone in Madison, Wisconsin, during my first year in graduate school at the University of Wisconsin.

I have many treasured memories of Christmas Days we spent with each of our families. Until the children were around five or six, we rotated between our parents’ homes. After that, our parents came to us. As our children graduated from college and started their own families, we followed pretty much the same custom. We were introduced to the pleasure of watching grandchildren enjoy Christmas with the excitement that is unique to children.

Kate and I also started taking vacation trips during the first or second week of December. Three or four times we have enjoyed the Christmas season in New York City. That’s my favorite time of the year to be there. We have also enjoyed Christmas season travel to London, Paris, Vienna, and several places in Germany.

This Christmas we find ourselves in a very different place. Next year we won’t travel to be with our children and their families. There is no way for me to know exactly what Kate will be like next year, but she is likely to continue her decline.

Kate no longer has the memories of Christmas that have been so special to us. I tell her about them, and she experiences momentary pleasure in being reminded. She can’t, however, retain and reflect on them. I am sad about this. I’m sad for her, and I’m sad for me; however, there is still good news. Even though her world is growing smaller, she continues to enjoy life. I know from other caregivers that moments of pleasure often continue for a long time. Whatever happens, I retain my memories of Christmas and the joy we have experienced during this season, and I am grateful.

My wish for you is that you continue to create your own Christmas memories to treasure now and for the days to come. Merry Christmas.

Posted on

Traveling to Memphis

Yesterday we left for what I expect to be our last Christmas visit to our daughter Jesse’s house in Memphis. As with our trip to Texas in November, I wasn’t sure that we would be able to make it. About two weeks ago, I felt sure enough to make our lodging  reservations. This will be only the second time we have not stayed with her and her family. At this stage of Kate’s illness, I felt it would be better to have the privacy afforded by staying in a hotel. She can sleep as late as she wants, and we won’t have to worry about any of the mess she makes in the bathroom.

Given how late she has been sleeping, I thought I would let her sleep until 11:30, grab a quick bite to eat, and hit the road between 1:00 and 1:30. As it turned out, she woke up about 10:30. That gave us time to have lunch at the Bluefish Grill, our regular Saturday lunch place.

On several occasions, we have stopped in Nashville to have lunch with friends or visit with our friend Ellen Seacrest. She’s our friend who had a stroke while visiting her daughter in Nashville three years ago this past August. We stopped for a nice visit with her. Earlier in the week, we had seen Louise, the woman who replaced her as choir director at her church in Knoxville. When I mentioned that we were going to see her, she asked if we could take something with us. Yesterday morning she brought a gift bag with a Christmas CD, an assortment of homemade cookies, and a card with greetings and signatures of Ellen’s choir members. That made this visit very special.

Ellen had directed the choir almost forty years and contributed in many other ways to the church. She was well-known and loved. The distance has kept all of her Knoxville friends from visiting her. To the best of my knowledge, we are the only ones who have visited her more than once. Thus, Ellen was quite moved to be remembered in this way. I asked Ellen if she would like to talk with Louise. She was excited when I mentioned it. I called, and Louise answered on the first ring. That began a 10-minute phone call that was certainly the highlight of Ellen’s day. I am so glad I told Louise we were making this visit. After Christmas, I think I will talk with Ellen’s daughter and see how she would feel if we brought one or two of her closest church friends with us on a future visit. That would be quite a thrill for Ellen.

I thought it would make the trip easier if we stayed overnight in Nashville and complete the trip to Memphis today. It would also enable Kate to sleep as late as she would like without getting us to Jesse’s too late in the day. That has worked out quite well though it is increasingly difficult to travel with Kate. There is so much for me to think about and manage. Lots of things come up that would be more easily taken care of at home. I don’t intend to stop all overnight travel. I could easily see staying overnight in Nashville on other trips to see Ellen, but I don’t think we will stay away from home longer than one night in the future. I am also uncertain about how long we might do that.