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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.

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Happy Birthday, Kate.

As a caregiver, I often hear expressions of concern about how I am getting along as well as compliments about my care for Kate. I appreciate that, but I sometimes feel Kate deserves more attention than I do. As I attempt to describe in this blog, this is a journey we are making together just as we have dealt with other challenges during our marriage.

Today is her 78th birthday, and I am thinking about the way she has approached her diagnosis. She accepted it with courage and a positive outlook. I would have been more public if I had been in her shoes, but I respect her decision to be more private. She has never wanted people to feel sorry for her or to treat her any differently than they had done before receiving her diagnosis. To this day, she has told only one person. That’s Ellen Seacrest, her closest friend whom we visited in Nashville on Saturday. I honored her choice for several years, but we were making changes in our lives that I ultimately felt required an explanation to our family and friends.

Consistent with her desire for privacy, she wanted to maintain her independence. I have tried to respect that but confess that I’ve not always succeeded. Over time, she has grown much more dependent. Even now, she prefers to do things on her own, but Alzheimer’s has forced her to acknowledge that she needs help.

She has always been even-tempered. Alzheimer’s has made that more difficult for her. Overall, however, she has been very easy to care for. That is especially true because she is so generous in her expressions of appreciation. It is much easier to care for someone who is grateful. On those occasions when she has been abrupt with me, she has often apologized. She is genuinely kind-hearted. That’s not just the way she treats me. It’s the way she responds to strangers we meet in our day-to-day experiences. I can’t tell you the number of times she has thanked bus boys and other cleaning staff in the restaurants we visit. She also gives warm greetings to other customers. That warmth also extends to her sitters whose names she still can’t remember.

Kate’s sense of gratitude goes far beyond the things that I may do for her. She often talks about how fortunate she has been in her personal life and we have been in our married life. I agree strongly with both of these things, but I am inspired by her recognition of how well life has gone for her. She never mentions the dramatic impact that Alzheimer’s has made on her life. By now, of course, she no longer remembers that she has Alzheimer’s. She has experienced frustration, but her diagnosis has never lessened her feelings of gratitude. She never feels sorry for herself. She views health issues and death as natural events to be dealt with to the best of her ability. It may surprise some people to know that we have found the past eight years since her diagnosis to be among the most fulfilling of our 55-year marriage.

Kate and I share a number of things in common. That’s one of the reasons we have gotten along so well pre- and post-Alzheimer’s. Among those things we have in common is a sense of gratitude. Above all, I am grateful we met and quickly sensed a connection that would be permanent. So on this birthday I want to go on record by saying how much I admire her, especially for the way in which she has handled “Living with Alzheimer’s.” In my book she’s a champ.

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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.

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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.

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Reflecting on Kate’s Intuitive Abilities. Part 2: Taste and Touch

By now you are well aware that Kate and I eat out for all our meals except breakfast. Thus, it should not surprise you that the sense of taste has played a relevant part in our lives. I can’t say, however, that it has brought with it the same degree of pleasure as music and our social experiences. Let me try to explain.

Kate and I are not “Foodies.” By that, I mean that we do not passionately explore a diverse variety of foods and ways in which they can be prepared. When we are traveling and when we dine out for special occasions, we may explore unique and tasty menu items. Since we eat out all the time, we don’t go to a lot of upscale restaurants. Most of them are everyday places.

That does not mean that the taste of food is irrelevant to us. On the contrary, we have found ourselves gravitating to food that we enjoy the most. For several years, I have ordered Kate’s meals for us. I do that based on the things that I know she likes, not necessarily what I think is best from a dietary standpoint. In other words, her taste in food and beverages does matter.

She has always liked Dr. Pepper (DP). It is not available at all the restaurants we frequent. When it is, that is what I have usually gotten for her. Her sense of taste, however, is something that has been changing. She no longer distinguishes the taste of different beverages as clearly as she used to. When she gets a DP, she frequently tells me “Something’s wrong with this.” Within the past year, I noticed that she was selecting a little of each of the beverages in the vending machine at Panera. She was no longer going straight to DP. The fact that she has gained weight has led me to order more iced tea half sweet and half unsweet. She has been happy with that. I still keep DP at home in the small cans but notice that she often doesn’t finish what she pours.

Apart from that, I choose specific food items that she likes. When we are eating a full meal, I often order salmon or scallops for her. She likes both. She also likes sweet potato fries. I order those when they are on the menu. In the sandwich line, she likes mostly turkey. One of the other changes in her taste has involved bacon. She doesn’t like the crispiness of bacon. I now ask that bacon be omitted from any sandwich that has them. Similarly, she doesn’t usually eat lettuce, so I omit that as well. I never get her a salad. The idea of a salad turns her off. That’s ironic because she used to make great salads.

Through experimentation we have settled into a array of items she likes at every restaurant we visit. She especially likes her Italian and Mexican meals, and she loves to add lots of Parmesan cheese to her pasta.

Both of us have always loved desserts. When we first married, we had dessert with every evening meal. Over the years, desserts became more of a treat for special occasions. Now we eat more desserts, about five times a week. That specifically relates to Kate’s desire for them. Don’t get me wrong. I love them just as much as she does; however, I am more prone to monitor what I eat than she is. My first reaction was to discourage eating more desserts. I had a second thought. Dessert is something we both enjoy, and I don’t want to look back and regret that I hadn’t taken advantage of the opportunity share that pleasure.

Speaking of desserts makes me think of the blueberry muffin she gets at Panera. That is something she has really enjoyed; however, now that she sleeps later in the morning, we don’t get there as often. When we do, it is in the afternoon. Then we usually just get something to drink.

Kate doesn’t demand a great deal with respect to her meals. She is getting what she wants. When you couple that with the other benefits of eating out, she is getting along well.

When I began to think of the role of touch in our lives, I initially thought of it as less important than the other senses. After thinking a little more, I’d have to say that it has played a significant complementary role in our overall relationship. Often that comes with routine expressions of affection. I believe we hug more than we did before Alzheimer’s. I know there are times when words don’t seem to be the right answer to a problem. When Kate has had a panic or anxiety attack, I have responded with a warm hug when I wasn’t sure what to say. There are times when we are in the car, usually on the way out of town, that she may reach across and simply touch my arm, hand, or leg. More often that that, she wakes up in the middle of the night, moves closer to me, and puts a hand on my arm. It’s just another way of saying “I love you,” but it’s an important one.

That leaves only the sense of smell. I’m not sure what to say about that except that it is something that I don’t see as having played a significant role in how well we get along with Alzheimer’s. Perhaps this is something I should pay more attention to in the future. Each of other senses, however, has been very important to us, and I expect them to last a good bit longer.

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Addendum for Previous Post

In my previous post I neglected to mention something else that illustrates Kate’s appreciation of things she sees as beautiful. At dinner last night our server brought out a dish with a small cup of Parmesan cheese and another of hot peppers. Underneath them was a paper doily that looked like something my grandmother used to crochet with an outer band of lace. On at least two other occasions, Kate has brought them home. Last night she did so again. She held it in her hand very carefully, trying not to damage it in anyway. Before getting out of the car, she asked me to take it. She said that I was likely to be more careful with it than she. I thought this was interesting in two ways. First, it expressed how much she liked something so simple. Second, she sensed a difference in the way each of us handles our things. She didn’t want it messed up. She trusted my OCD tendencies to protect it.

It also reminds me of how kind she can be in her evaluations. There are many simple things that she appreciates that she might not have before her Alzheimer’s. She is very generous in her own critiques of theatrical and musical performances. She is the same with her attribution of skills of the people she meets. I notice this a lot when I do something simple and very ordinary. She will say something like “You’re so smart.” She does the same thing with many of the people we encounter daily. I think this is a natural outgrowth of her own loss of rational abilities. She still retains an appreciation of such skills and is impressed with the people who still have them.

Seeing beauty in things we take for granted and special skills that we would also overlook gives her more things in life to enjoy than the average person. That’s something else that the longevity of intuitive skills provides to make life enjoyable. How grateful I am for that. That has made living with Alzheimer’s easier for both of us.

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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.

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Recovering from Morning Confusion and Thinking about Life and Death

After her confusion yesterday morning, Kate remained in bed another hour before getting up. I didn’t see any sign of the confusion I witnessed earlier. In fact, I don’t recall her asking my name or hers the rest of the day. When she was dressed, we went directly to lunch. At lunch, she said something about our being friends. I told her we are very good friends. Then she said, “I thought that we were married.” She had obviously recovered from her confusion.

That is a good illustration of the fact that most changes occur a little bit at a time. She started with occasional slips on the names of acquaintances, then grandchildren’s names. Gradually, they became more frequent. Then it was our children’s names. Now it is mine and her own. Memory comes and goes, and will ultimately disappear completely. She is gradually forgetting that I am her husband. I am hopeful that for a good while she will hold on to her feelings that I am not a stranger but someone she will continue to love and trust.

As we took our table at lunch, I saw a former client and his wife at a nearby table. Kate and I went over to speak to them. When we shook hands, he said, “How are you doing?” The way he asked it sounded as though he knew about Kate’s Alzheimer’s. I gave him my usual response that we are “doing remarkably well.” As we turned to his wife, he said that her cancer had returned. I asked about treatment. She said that she had already had surgery as well as chemotherapy and radiation and decided not to pursue anything further. I suddenly felt a kinship with them that I hadn’t felt before. Her husband said they were taking it a day at a time and enjoying themselves. I told him that is exactly what Kate and I are doing.

Yesterday afternoon, we attended a memorial service for a church friend. Her husband is one of several men I contacted a few years ago to explore interest in getting together periodically. He was the only one who declined. I regretted that because I got the impression from our initial conversation that their situation and ours were very similar. We encountered them occasionally at two of the restaurants we frequent. Today’s service confirmed my belief that we shared a number of things in common. He and his wife were extremely close, and they had been able to enjoy life as we have done. I also recall that her decline had been very gradual like Kate’s. Their son spoke at the service and talked about his mother’s Alzheimer’s. Like us, they did not have to face any challenges of other health issues or personality changes. Although the son mentioned the changes brought on by Alzheimer’s, it was a very upbeat account of his mother’s life and what she had meant to her family.

I hesitated going to the service because I didn’t want Kate to be bothered by anything that might be said. I was thinking of passing references to Alzheimer’s. If I had known how much the son was going to say about his mother’s symptoms, I would not have gone. Fortunately, I don’t think Kate picked up on any of it. After the service, she didn’t say a word about the service or anything that was said. She was just the way she would have been had there not been any mention of Alzheimer’s.

In the last three years, two of the spouses and one of the caregivers with whom I had been in contact died. A week ago, I attended a joint memorial service for a husband and wife, both with Alzheimer’s, who passed away within 6 days of each other.

The passing of these friends and the recurrence of cancer for my client’s wife causes me to think about more about Kate and how long she will be with me. In yesterday’s service, the son mentioned that his mother’s decline had been very gradual until the last few months. I hope that will be the case for Kate. I know she would not want to linger for years. That’s a hard thing for a spouse or other family caregiver to say. When I have heard other caregivers express this sentiment, I have recoiled. Now, I am beginning to understand.

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My Dad

Today, the 105th anniversary of my dad’s birth, I am thinking a lot about him. He was a character. Everyone who knew him recognized that. He enjoyed life and invited others to join him. People, especially Kate, tell me I talk a lot, but I had a hard time keeping up with him. He was also a man with a sense of humor that sometimes fell outside the customary boundaries of propriety. Until his stroke in 2010, he was quite active on email. He was one of those who regularly sent jokes to his distribution list. I wasn’t on his list, but several of my female colleagues at the office were. I also learned that his Kiwanis club asked him to be more sensitive concerning jokes about sex and politics.

It isn’t his talkative nature or his sense of humor that I am thinking about most on this day. He was also a devoted husband to my mother. My mother loved to tell about seeing him for the first time in the ninth grade. She said, “Right then, I knew I was going to marry him.” She was right. They married right after high school when she was 17 and he was 18. After Dad’s death, my brother found a batch of old letters. Among them was an Easter card from my mother that she must have given him in the mid-1990s when she was around 80 and before dementia changed her life. She wrote a note that said, “From the first time I ever laid eyes on you, I have loved you – and I will love you forever.”

Mom and Dad were married 70 years and devoted to each other. That is what I’m thinking about today. Mom cared for him a lot until dementia entered the picture. At that point, Dad rose to the occasion and became her loving caregiver. They moved to Knoxville on Memorial Day weekend 1994. I didn’t recognize it at the time, but I am sure now that she was in the early stages of dementia when they arrived. Although I was with them a good bit, it was three or four years later when I realized that. She died in November 2002.

Dad was her sole caregiver right up until her death. She slept in the same bed with him until three days before she died when hospice brought in a hospital bed and put it right beside their bed. My brother, Larry, and I tried to bring in help without success. The only regular help he had was an adult day care center. Every Wednesday morning he dropped her off. Then he went to Kiwanis and did a little grocery shopping. I helped by visiting with them regularly and bringing in meals.

Although Dad was a big talker, I don’t recall his saying much about what was going on. I do remember his telling me that she would get upset with him and then quickly forget. I also remember that he tied one end of a string around her arm and another around his so that he would wake up if she started to get up during the night. I never heard the first word of frustration or complaint. On days when I took them places, I rolled her to the car in her wheel chair. To get there we had to roll across the grass. That adds a measure of difficulty. When I would fold the chair and put it in the trunk, I wondered how Dad, in his upper 80s at the time, could do this on a regular basis.

So, on this 105th anniversary of his birth, I have a new admiration for Dad. At the time, I had no idea what he and my mom were experiencing, nor did I know that I would be walking the same pathway a few years later. Now, I understand his desire not to relinquish her care to someone else. He felt he was the one who knew her best and could provide the best care for her. That took a toll on him the last year or two of her life. Fortunately, he bounced back after her death and lived another 11 years to celebrate his 100th birthday. He was quite a guy.

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A Follow-up to “The Light is Dimming”

I maintain a very active email correspondence with two college friends from TCU, Tom Robinson and Bruce Morton. Tom responded to one of yesterday’s blog posts that dealt with Kate’s recent changes. I am copying his message along with my reply as I believe it sheds a little more light on our present situation.

Email from Tom Robinson

Richard, I just read your blog, and the “Light Is Dimming” is, for me, the saddest one yet. I’m thinking it is for you, too. As you say about yourself, I’ll say, too: I did not realize that Kate would, being this far along, be saddened by her inability to remember. This is the first time I recall your writing about this, so it must be that it is the first time. Of course, maybe she was crying about something else. I don’t know. But I took it as you seemed to – that she was realizing she has a disease and that the loss of memory is not going to stop. It does no good for me to say so, but my heart so truly goes out to you and Kate. I was glad to see the later post where things were somewhat better. What would we do without music!!!

Tom

My Reply

Thank you, Tom. You are reading the situation correctly. The convergence of so many new symptoms as well as the increasing frequency of the old ones tells me Kate is declining more rapidly now. We may still have plateaus, but she is clearly reaching a new low. As I have conveyed and you understood, I had thought because she seemed to have gotten along so well up to this point that she would just drift away without realizing that she has a problem. That has been particularly true since she has been asking me about my name and her own name. She has done so without displaying any sign of being disturbed by it. Regardless of whether she sees her symptoms as a sign of Alzheimer’s or not, I can now see that she is indeed aware of her loss of memory and it disturbs her. 

 As I remind myself, let me remind you that we are on borrowed time. Because it has been 12 years since we saw the first signs of her Alzheimer’s, we could have faced the current situation several years ago. That doesn’t end the pain; it only helps me to put it in perspective. I remain satisfied that we have taken full advantage of the time we have had. I even believe that the way we have approached her diagnosis may have helped us get along for a longer period of time than would have otherwise been the case.

 This is not the end of our good times, but I expect to see more signs of change. It’s not going to stop. That is the nature of this disease. About 30 minutes ago, we arrived home after dinner. She left the kitchen for the back of the house. She came back to the kitchen rather quickly and pointed to the door to the dining room. I asked what she wanted to do. She said, “I don’t know.” I asked, “Do you want to brush your teeth?” It turned out she was asking if that (through the door to the dining room) was where she should go to brush her teeth. I walked her to the bathroom. On a couple of other occasions, she has been disoriented upon arriving at home, but that has been after dark. This time it was still daylight. It is difficult to watch this deterioration of someone you love who had been a fully-functioning adult with two master’s degrees.