2019 | - Part 38

January 17, 2019

Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

January 16, 2019

Sleeping Later Doesn’t Always Mean Later

As I have mentioned in recent posts, Kate now sleeps later than she used to although sometimes she surprises me. Today was one of those. I was listening to a book by Donna Leon while taking a 30-minute walk around the house. (Yes, I know it sounds boring to walk in the house, but listening to books helps. Besides I no longer feel comfortable leaving Kate alone.) Just as I was ending my last circle from kitchen, to family room, to living room, to dining room, and back to kitchen, Kate opened the door to the family room. It was 7:30, very atypical for her. In fact, I think this would be the earliest she has gotten up during the past eight or nine months.

When I walked over to her, she asked, “Where are my clothes?” I often put them out before I go to bed but didn’t do so last night. I intended to do that this morning but thought I would have more time. I told her I would help her. She asked again where her clothes were. I detected that she wasn’t just asking the location of her clothes for the day. She was looking for all of her clothes to pick out something. She no longer knows where we keep anything. A little later I discovered that she had been in my closet. She was no doubt looking for her things.

I walked her back to her room. As we walked along the hallway, she stopped to look at a picture of her mother when she was in her late teens or early twenties. She said, “Who is that?” I told her it was her mother and said, “She was a beautiful woman.” She said, “Is she gone?” I told her she had died thirteen years ago. She was sad. Then I showed her pictures of her grandparents and the old Franklin home in Fort Worth. When we got to her room, I asked if she would like me to pick out something for her. She did. I gathered several things together, and we walked back to our bedroom.

I laid out her clothes on the bed and she said, “Don’t you want me to take a shower?” I told her that would be nice, and she said, “Who are you?” I gave her my name and explained that I am her husband. She was mildly surprised but not alarmed by the news. We walked into bathroom where I turned on the shower and left her to bathe.

I learned two lessons. The first is that I should be sure to get her clothes ready the night before. The second involves a new video monitor I set up yesterday. It is simply a small Amazon Cloud Cam that connects to my computer, iPad, and iPhone. It seems to work well, but it’s of little help if I don’t check it. <g>

January 16, 2019

A Nice Day with Touching Moment at the End

Like most of our days, we had a variety of experiences yesterday. Kate woke up on her own at 10:00 which worked well since I had a 1:00 appointment to have my car serviced and wanted to eat lunch prior to that. As usual, she was slow to be ready for much conversation, but she appeared to recognize me and smiled when I first saw her.

As we drove away from the house, she said something that surprised me. I don’t remember what it was, but Kate thinks I underestimate her abilities and expressed it to me. That led to her saying, “Men are like that. Women could probably do a lot of things better than a man.” I said very playfully (at least I intended it to be playful), “But I’ve been a “womenslibber” for a long time. She laughed and said (very skeptically), “Are you kidding?” I decided not to extend the conversation any longer and let it die. This kind of talk has never been part of our ordinary conversation until very recently. I don’t know what prompted it, but she has brought up the topic on a number of occasions in the past few weeks.

It was one of those days when she was especially concerned about “where we are.” I repeatedly told her during lunch, and she worked hard to remember. She just couldn’t. During lunch, she asked me to tell her about her parents. I mentioned both their names, and she immediately picked up on her mother’s qualities. It intrigues me that she focuses so much more on her mother than her father. She has always loved both of them. When we talk about her father, she always speaks affectionately about him. On the other hand, her mother receives the lion’s share of her comments. I believe that relates to the fact her father died almost twenty-nine years ago, and it has only been thirteen years since her mother passed. In addition, her mother lived with us the last five and a half years of her life.

We had appointments for haircuts in the afternoon, and I discovered a new issue that we are facing. A couple of weeks ago Kate’s brother’s wife, Virginia, mentioned that pulling one’s hair is something that is common among people (women?) with dementia. I think she was responding to some of my posts in which I said that Kate has acquired a habit of running her fingers through her hair. She starts near her skull and pulls a few strands of hair upward. Virginia said that this can lead to infections of the scalp and that I might ask the hairdresser to watch for this. Today was my first time to ask her to be attentive to this. I had forgotten to do so; however, as we were about to leave, she approached me and said that she had seen some places on her scalp that show a bit of irritation. She, too, had seen this kind of thing before. The big question is “what can we do about it?” My first step was simply to tell her that the hairdresser had noticed the irritation and suggested that she not run her hands through her hair as she had been doing. She was very responsive; however, it’s impossible for her to remember. It was not long before she got into bed and began again. I reminded her, and she stopped. I am sure that she will not remember. We may have a problem on our hands.

I had just finished paying the check after dinner when Kate said something about our relationship. It wasn’t long after that when she looked at me and said something about the possibility of our getting married. She could tell by looking at me that I didn’t know exactly what to say and responded before I could answer. She said, “It’s just something we could think about.” I said, “I love you and have good news for you. We are married.” She said, “We are?” I said, “Yes. We’ve been married for 55 years, and they have all been good years.” As I said this, I feared that by telling her the truth might cause a different kind of reaction. She might have taken that as a sign that “something” is seriously wrong with her. (On several occasions, she has been concerned about that and no longer remembers that she has Alzheimer’s.) Instead, she was happy, and her eyes filled with tears. We sat there for a few minutes holding hands across the table. This is the second time she has suggested our getting married. In both situations I have been touched by this tender expression of her feelings and was glad she was happy when she learned that we really are married.

January 15, 2019

Our Appointment with the Ophthalmologist

The biggest event on Kate’s birthday was her semi-annual visit to her ophthalmologist. We have been monitoring her cataracts for the past several years. During the previous two visits, they had reached a point that her doctor said we could go ahead or wait a little longer. After our discussions, I decided her vision wasn’t poor enough to necessitate surgery. Since the last visit, however, I had noticed what I thought was a significant decline in her vision. She was being exceedingly careful when going up or down stairs or curbs as well as pavement with light and dark sections or cracks. I wasn’t sure if the problem related to her Alzheimer’s or the cataracts or something else. Yesterday’s examination confirmed my suspicions about the decline and that the cataract in her left eye is the problem. We spent most of our time talking about the procedure itself and how comfortable the doctor felt about doing it with Kate at this stage of her Alzheimer’s. She was quite comfortable but said it was my call. At first I said I wanted to think about it and would call back with an answer. We talked a little bit more, and I decided to go ahead. We made an appointment for surgery on February 12. We have no plans to follow up with the right eye since it is a long way from requiring surgery.

It was interesting to observe Kate during yesterday’s examination. At the very beginning the woman who took care of the initial eye test asked how she had been getting along, if she had noticed any changes since last time. Kate said she could see just fine and had no problems. As the technician was about to jot that down in her record, I asked if she would like my impression. Then I told her that I thought the cataracts were causing more problems now.

It wasn’t easy for her to follow the instructions. When asked what she could see, Kate often asked, “Where?” She actually expressed some irritation when the technician tested her peripheral vision by holding up her fingers and asking how many fingers she could see. Twice Kate said in a stern voice, “Wait a minute!” The biggest challenge involved her reporting if she could see the “Big E.” That’s the one that encompasses the whole screen and must be 12” high. Kate first said that she couldn’t see anything. I think this was a result of her Alzheimer’s and not her eyes. I believe she saw the E but interpreted it as a bunch of lines and not a letter. Finally, she recognized it as an E.

The exam made me more appreciative of the challenges Kate has seeing everyday things. This happens a lot when we are in the car. I will say, “Look at that” and point to something. We often have passed whatever I was pointing out before she can figure out where to look. There are also many times that she doesn’t see objects that are in plain sight, for example, the clothes I lay out for her. She doesn’t know what to focus on. I believe this is largely a problem created by Alzheimer’s and not a physical problem with her eyes.

Having made the decision to have the surgery, I am now eager to see how much her vision improves. I am optimistic that it will help her feel more secure when she goes up and down curbs and stairs and across pavement. It would be great if it also makes it easier for her to work her jigsaw puzzles. We’ll soon find out.

January 14, 2019

Catching Up

I observe so many examples of “Living with Alzheimer’s” these days that I forget to document them for the blog. That’s a special problem when we have very active days as we had over the weekend. With our trip to Nashville on Saturday and a play yesterday afternoon, I failed to note several things.

One of those occurred yesterday morning. I thought it was noteworthy because I had written a post the day before in which I said that Kate almost always recognizes me as someone she knows and trusts. That wasn’t true yesterday. We were going to a play at 3:00, and I wanted us to have lunch without rushing, so I woke her about 10:30. I began by playing some soft music. Fifteen minutes later, I went in to see about getting her up. When I did, she looked at me strangely, and said, “Who are you?” I asked if she meant how we are related. She nodded yes. When I explained that I am her husband, she was surprised. Then I said, “You do recognize me as someone you know and are comfortable with, don’t you?” I expected her to answer yes, but she didn’t. Instead she said, “I don’t know.” Then I went in another direction. I said, “I am Richard Creighton, and I care about you very much. I’d like to take you to lunch. Would you like that?” She said, “Where are my clothes?” I said, “I’ve got them right here for you on the chair. Wouldn’t you like to take a shower before you dress?” She said, “Where is it?” I said, “It’s right over here. Let me show you.” Then I helped her out of bed and walked her to the shower. From that point on, everything went well. At lunch, she even used my name one time. Interestingly, I don’t recall her asking my name or hers the rest of the day.

One of the lessons I am learning is that explanations don’t seem to have the same power or effect that experience does. This is true for everyone she meets, not just for me. If I tell her we are going to have lunch with someone, she almost never knows who I am talking about. If I give her a little information about how we know them, that doesn’t seem to help. Once we are with them, it appears that she picks up more powerful clues. It’s her intuitive abilities that help more than her rational ones. I am sure that the longer we are with them, the more comfortable she feels. In an hour she picks up more information. This doesn’t mean that she remembers their names. It means she “senses” that they are people she knows and is comfortable with. The same thing seems to occur when she looks at photo albums. At first, she may not recognize some of the people. The longer she spends with the album, the better her recognition.

This discussion of recognition reminds me that she continues to have problems recognizing our house as “our” house. I noted above that she asked where the shower is. It is very common for her to ask where the bathroom is. She continues to want to follow me when we walk into the house, but not always. She also continues to confuse our house with a place we are staying while out of town. For example, after we got home from Nashville the other night, she asked if we were going to sleep here. I believe that is what she was thinking last night when she whispered my name and motioned to me to come over to her. When I got closer, she whispered, “Could you get me something to wear to bed?” I noticed that she had also closed our bedroom door. Earlier she had closed the door to the family room.

Something else that I noticed over the weekend is that she had some very talkative moments. One of those occurred Saturday night, after turning the lights out, she started talking about her mother and how much she helped other people. By itself that would not be unusual, but I was struck by some of her observations about people in general. She said that people have lots of different kinds of problems and generally don’t feel comfortable talking to others about them unless they are people they trust. She explained that her mother was that kind of person and could listen without being judgmental.

She was also talkative at lunch yesterday. Some of that involved teasing me. I said something about her birthday which is today. She asked how old she would be. When I told her, she asked how old I am. I said, “I’m 78, but I could pass for 50.” (Joking, of course.) She laughed and said, “Have you looked in the mirror lately.”

Her appreciation of comedy has never included slapstick or farce. Yesterday we went to see Arsenic and Old Lace at one of our local community theaters. It’s a farce from beginning to end. She didn’t enjoy it. It seems like most of the local productions are musicals. She can appreciate them because of the music. I don’t think I will get tickets to another play. They demand too much of her. That’s not a great sacrifice. There are plenty of musicals.

January 14, 2019

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 78^th 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.

January 13, 2019

A Nice Visit with Ellen

I try to arrange for us to visit about once a month with Kate’s good friend Ellen who lives in a memory care facility in Nashville. Our last visit was the Saturday before Christmas. On Friday, I realized that we are going to be tied up the next three Saturdays and scheduled a trip to see her yesterday. It was a day when everything seemed to go well. Kate surprised me by getting up around 10:30. That gave us time for lunch and still get away before 1:00. That gets us to Nashville later than I would like, but that works best for Kate.

The visit with Ellen was a good one. We chatted for about an hour. That is challenging because it is more difficult to understand her with each visit. We could only understand about a quarter of what she said. Fortunately, her mind is clear enough to understand us. We ask lots of “yes-or-no” questions. She either speaks the words or nods to answer. Her son is a Facebook friend who went to Clemson. I brought up some of his recent posts that included photos of his children and his trip to the Clemson/Alabama game. She enjoyed seeing those.

As we have done on our visits over the past six months, I played some YouTube videos of musical performances. Yesterday I focused on opera. She wasn’t familiar with Kristine Opalais and Jonas Kaufmann, so I played several arias and a duet of theirs. She was entranced, and so was Kate. It’s a very touching experience for the three of us. Ellen and her husband, Gordon, were neighbors of ours in the early 1970s. Our children grew up together. We celebrated many birthdays, holidays, and other special events together. Ellen was Kate’s closest friend in Knoxville. After Gordon’s death in 2013, Kate and Ellen became even closer. They had lunch together every Monday while I was at Rotary and got together at other times as well. Ellen’s stroke almost three years ago changed both their lives. With Ellen’s limited ability to communicate, music has been a powerful way for us to connect. It is truly an emotional experience. Kate was moved to tears through much of the music yesterday and frequently reached out to grab my hand. It will no doubt become even more difficult in the future as both Ellen and Kate decline. In the meantime, I intend for us to continue our visits and sharing a connection that only music can provide.

January 12, 2019

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.

January 11, 2019

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.