Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

Looking Ahead and Making Changes

During the course of Kate’s illness, I’ve always tried to anticipate the future and make necessary preparations. With her changes over the past few months, I’ve been doing a few things that I have held off for some time. The biggest one involves the yard. A year or two after Kate began her “extreme pruning” activity, I began to wonder about the long term impact it would have on the shrubbery. At first, I thought it might be beneficial, but it would come at a time when she could no longer appreciate it. It wasn’t long after that when I suspected the shrubs might be permanently damaged. At the time, she had three things that occupied her time – pruning (“pulling leaves”), editing photos for a photo book on her computer, and working jigsaw puzzles on her iPad. Pulling leaves was her major activity when weather permitted. She could spend as long as 6-8 hours a day in the yard. Because she seemed to enjoy it so much, I made a conscious decision to let her pull leaves as much as she wanted even if it meant having to replace the shrubbery.

When this past spring arrived, it became clear that most, if not all, of the shrubs would have to be replaced. I didn’t want to move too quickly. I thought it might bother Kate. I didn’t want her to feel guilty. I realized she might never make the connection between her pruning and the demise of her shrubs. On the other hand, I didn’t want to risk it. Two or three months ago, I hired someone to start the project. I wanted it to be gradual so that Kate wouldn’t notice. He began by cleaning out the weeds. That’s been a big job. He is still working on that. He has another fulltime job, so he only works on Saturday. Along the way he has taken out four or five good sized shrubs. There are probably another twenty that will have to go. I think we should have the clean up done in the fall. Then we will look at planting new shrubs.

I have been surprised that Kate has had no reaction at all. She has seen the man and his wife working in the shrubs and hasn’t expressed either interest or irritation that I’ve initiated this without consulting with her. In addition to the cleaning out the flower beds, I asked them to use Kate’s existing pots for plants on our patio. I told Kate this was an anniversary present. I had hoped that she might take an interest and enjoy tending to potted plants as she has done in the past. This was an idea that flopped. It turns out that I am the one who tends to them. I really hadn’t wanted that, but that may be good therapy for me

For a long time, I have felt the need to do some serious work to the inside and outside of the house itself. I recently had all of the windows replaced. The next job is painting the outside. I’m going to wait until fall for that.

Our housekeeper passed away in April. Her daughter filled in for her until the end of July. Through a friend I found someone else. She started yesterday with a deep cleaning of the entire inside of the house. She brought a helper, and the two of them worked twelve hours. Like most people, we’ve accumulated a lot of “stuff” that we never use. I’ve spoken with her about helping me clean out a lot of these things. Chief among those are clothes that Kate will never wear again. Most of these are too small for her now. I’m going to feel better when we get organized again.

These changes are a direct result of the changes in Kate’s condition. I wanted to allow her to continue to be the one in charge of the house. That has been her role in the past. Of course, I recognize that I have gradually come to be the one to assume that role, but I haven’t wanted to do anything that I thought she might not like. At this point, I don’t think she will even notice much of what is done. A couple of years ago, I took out the tall entertainment center and the 42-inch TV in our bedroom and replaced it with a much lower cabinet with a 65-inch TV on top. I don’t think she ever realized the change. She never commented on it. By now, of course, she would not remember at all.

Running behind this morning.

It’s a beautiful day today. I woke up at 5:20, a good time for a summer walk of 3.4 miles, cooled off in the pool for 20 minutes, and had breakfast. You might think I had plenty of time to write another post, but somehow I haven’t done it.

This is another morning when Kate would have liked sleeping longer. I woke her at 9:45 so that we could be ready to have lunch with two church friends at noon. We are to pick up one of them at 11:30. Fortunately, Kate got up quickly. She’s a real trouper. She was ready early enough for us to make a stop by Panera for her muffin and a little relaxation before we leave here in about thirty minutes. I am always relieved when I don’t have to rush her.

We have another engagement later this afternoon, so I will be out of touch most of the day. When I have a moment, I will try to catch up on our day yesterday. Fortunately, I don’t have anything unpleasant to report.

Wishing everyone a great day.

Little Things

As we were getting our things together to leave for Panera this morning, I told Kate that I would get her iPad if she would get her cup. This is a fairly routine moment each day. The exception is when she is in a hurry. Then she goes directly to the car and waits for me to get everything. For the second day in a row, she couldn’t think where the cups are located. I don’t every recall her having that experience before. At various times during the day, she frequently goes to the cabinet and gets a cup. It’s a little thing but another marker in her journey.

When we pulled out of the driveway, she said, “What is the name of this street?” That is the first time she has asked that. Based on other things she has forgotten, I suspect she has had trouble remembering the name of our street for quite a while. Then she waved to the neighbors’ houses and said, “Bye, whoever you are.” That is a very common thing for her to do. She hasn’t remember their names for a long time. I find it cute the way the way she says it. She intends to be funny. She doesn’t think either of us knows their names. She sometimes says, “Bye, even if we don’t know your names.”

Kate, Always the English Teacher

At the time of Kate’s diagnosis, we were told that her greatest strengths were likely to stick with her the longest while her weaknesses would deteriorate more quickly. That has proven to be true for her. She has always been geographically challenged. Getting lost when driving to places that should have been familiar was an early sign of a problem. Among her greatest strengths is an ability to handle herself in a variety of social situations with different types of people. I have mentioned many times how well she gets along when we are around friends and strangers. Even when she can’t remember people, she is able to engage in brief conversations as if she did. That has enabled us to remain socially active longer than I expected.

There is another strength that I’ve never mentioned. It is also one that hasn’t disappeared. She got her bachelor’s and master’s degrees in English and taught English for three years before taking a break when our children were born. When they were school age she completed a master’s in library science. Throughout her career, she has always thought of herself as an English teacher. Our grandchildren could testify to that. They have been corrected by “Nan” concerning their use of the English language many times.

She doesn’t limit her corrections to the grandchildren. I am often called to task as well. Even now, she frequently corrects me about one thing or another. If she were reading my writing I know she would have many edits. These days her corrections usually involve my use of specific words that she believes do not capture precisely what I intended or should have said. For example, this morning after she remembered someone’s name, I said, “You’re right.” She said, “I am right sometimes.” Thinking I was supporting her, I said, “You are frequently right.” Then she responded. “It would have been better if you had said, “usually.” I said, “You’re right again.”

I make a point of this because it’s a good illustration of how much her brain is still working and working correctly. Once in a while she says something that surprises both of us. When that happens, she sometimes says, “Don’t count me out yet.” The most appropriate response is, “I won’t.” I know, however, there are many times when I don’t think she will remember something or be able to perform some task. The easy thing is to believe is that she can’t remember anything, do anything, or understand anything. It’s much harder to recognize that even this long after her diagnosis (7 years this past January), she still possesses a good bit of knowledge and skill. I think I’m very good when it comes to recognizing this intellectually. I need to work harder to put that knowledge into action as I care for her during this most challenging time of her life.

We’re back at Barnes & Noble

It’s a little over an hour after my postscript to the previous message. We spent a pleasant 45 minutes in the family room while she worked on her iPad, and I folded the clean clothes. Then she was ready for a change. Before leaving the house, she went to her room for something. When she returned, she had put on a new top over the one she was already wearing and carrying a heavy cotton robe and a pair of shoes. As she walked by the coffee table, she picked up a wash cloth I had just folded. I didn’t say anything. I just waited to see if she were planning to take them with her in the car. When we walked into the kitchen, I noticed that her top was on backwards and mentioned it to her. She took it off. Then it was inside out. She recognized that and started to fix it. Then she stopped and put it under her arm and picked up the robe, shoes, and wash cloth and took them to the car. I never asked why. I have done so on a few occasions, and she hasn’t been able to say. She didn’t bring them into Barnes & Noble. I would have said something if she had done that.

Recognizing People with Dementia (PWD) as More than Patients

The first book I read following Kate’s diagnosis was Jan’s Story by Barry Petersen. I remember thinking it should have been entitled Barry’s Story because it didn’t really tell the story of Alzheimer’s from Jan’s point of view but from his. Since that time (7 years and 3 months), I have had a good bit of personal experience and have read about the experiences of other caregivers and a few people with dementia. That has led me to see that caregivers receive a disproportionate share of the attention. As a caregiver myself, I certainly believe we need and deserve attention. I just don’t want us to forget or neglect the people with dementia.

My first personal glimpse of this came when I tried to locate a local support group for people with dementia. I couldn’t find one. I contacted national and local offices of the Alzheimer’s Association as well as my contacts in the field of elder care and social work. I discovered many opportunities for groups for caregivers, but nothing available locally for Kate. This did not present a major problem for us since she preferred to be private about her diagnosis. A couple of years ago, however, I asked if she might be interested in finding a group. She said she would. That is when my search failed to come up with anything.

Since then, I have read books by people with dementia and found that they, too, believe they don’t receive their fair share of attention. I’m currently reading a book entitled The Lewy Body Soldier by Norman McNamara. He is particularly outspoken about the need to include people with dementia in all planning for programs and facilities for people with memory problems. Kate Shaffer and Rick Phelps are two other people with dementia that have been strong advocates for people with dementia.

I believe there are reasonable explanations for this disproportionate attention on caregivers. I think it all begins with an image of a PWD. The tendency is to think of someone who is in the later stages of the disease. Most of us don’t think about the long period of time before that when one can function pretty well. I believe Kate is now in Stage 6 of the 7 Stage model of the progression of Alzheimer’s. Yet, she functions very well in our social interactions. Most people would never guess that she has Alzheimer’s. It makes me think about the large number of people around us that have dementia and who could contribute in many ways to help us better understand this disease.

As I think about it, I believe that even caregivers often misunderstand the abilities of those for whom they are caring. I know that happens to me. It is evidenced in the struggles that Kate and I have over her independence. I want to help her, but I have a tendency to help where help isn’t needed or wanted. She lets me know. As I pointed out in a recent post, this is a challenging situation. It requires keen observation and ability to adapt as the disease progresses.

Beyond this misunderstanding of the abilities of PWD, it is much easier for people to see and understand their own problems. I can easily see my own problems in adapting to Kate’s behavior, but I have little knowledge of her problems. She has never talked much about hers. I can only infer from what I see. I know she must struggle in ways that I do not recognize. I wish I did. Thankfully, she is not shy in letting me know when I say or do the wrong thing, and it is normally done with an element of love and respect.

Of course, caregivers have considerably more opportunities to make their own needs known. There are many support groups in local communities where they can share their experiences and frustrations. There are also many online communities like those sponsored by the Alzheimer’s Association or a number of groups on Facebook. In addition, there are many books addressing the needs of caregivers and tons of advice for making their role manageable.

I believe there are two guiding principles that could be a starting point for those of us who want to enlarge the focus on PWD and make them a greater part in providing better care. One is to recognize that PWD have a broad range of abilities well into the later stages of the disease and to capitalize on this knowledge. There is much that a person can do and contribute long after the diagnosis. Second, is to recognize there is great diversity among PWD. One approach to working with PWD is unlikely. I have tried to keep Kate and me as socially active as possible. We spend the better part of every day away from home. In some ways, I wish that weren’t so. On the other hand, I believe the kind of social interactions we have at Panera, Barnes & Noble, the restaurants we frequent, the live performances we attend, and our various day trips to visit out-of-town friends have gone a long way to maintain Kate’s ability to get along as well as she has. These things appear to have worked for us. Caregivers and loved ones have to make their own decisions concerning what is best for them. And as I have said before, many people have more complicated and challenging situations than Kate and I. Some are working full time jobs while playing the role of caregiver. Many have a variety of other health issues to deal with. In addition, some face more challenging symptoms like anger and aggression. All that any of us can do is give our best under the conditions we face. I wish everyone the very best as you negotiate this path.

Welcome to Living with Alzheimer’s

Welcome to “Living With Alzheimer’s.” I suspect that you or someone you love has Alzheimer’s or some other form of dementia. If so, I hope you will find words of encouragement and support at this site. You may also find it to be a place where you can learn more about the progression of this disease, but that is not my primary objective. There are many other places where you will find volumes of information about that. What you will find here is, I think, quite different. It is a detailed account of the personal experiences my wife and I have had with this disease.

On January 21, 2011, my wife, Kate, was diagnosed with Alzheimer’s. We were not surprised. We had seen the first signs as early as 5 years before in 2006. The day of her diagnosis I began a journal that represents a chronicle of our lives since that time. It has now grown to more than 1000 pages. It includes the news of her diagnosis, our immediate reactions, how we planned to manage the changes that would affect us individually and as a couple, the frustrations we have had, our relationships with friends, our travel and entertainment, descriptions of the changes that have taken place since the diagnosis as well as how we have coped with the disease.

I never intended the journal to be a place for me to express my personal frustrations although they are included. I have tried as best I am able to convey Kate’s own experiences and how she has felt. Kate’s early decision was not to dwell on her illness. She wanted to focus on living as normally as possible for as long as she could. I respect her decision, but that has meant we have talked very little about her Alzheimer’s or how she is feeling. For that reason, most of the things I have written about her feelings are based strictly on my own observations.

I want to make clear up front that Kate and I have been very fortunate on this journey. Many couples have suffered more frustrations and difficulties than we have. I know because I have been an active reader of books by people with dementia or their caregivers. I also read a lot on the online forums or message boards like those offered by the Alzheimer’s Association or Facebook pages like Memory People and Life with Alzheimer’s. Despite the challenges we have faced, I’d like you to know that it has been possible for us to find happiness while living with Alzheimer’s. We have found the road to encompass highs and lows. I have found personal satisfaction in savoring the highs and try to foster them whenever possible.

The most difficult part for me has been watching Kate gradually lose one ability after another. The remarkable thing is that we are still able to enjoy life together. I know that this will not last forever. Indeed, I would say she is now in the first half of Stage 6 of the commonly used 7-Stage model for the progression of Alzheimer’s. ( Time is running out.

From the time of her diagnosis, we made a commitment to make the most of our time together. I believe we have been successful. Several things have made that possible. First, neither of us has had any other health issues that could have made our lives more difficult to manage. Second, the progression of Kate’s illness has been very slow. That has given us more time than I originally thought we might have. Third, Kate has not (yet) experienced some of the most troubling symptoms of Alzheimer’s. I am thinking especially of anger and violent behavior. That would have made our experience dramatically different. Fourth, our personalities fit in a way that has made it easier to deal with many of our frustrations. Fifth, Kate’s diagnosis came when I was approaching retirement; therefore, I have been free of job responsibilities.  That enabled us to spend more time together. Equally important we have not had to deal with the financial pressures that often accompany this disease.

I don’t want you to think that your own experiences will be or should be like ours. I have come to appreciate the fact that we are all unique individuals before living with this disease. There is no reason to think that we are all the same with respect to our experiences afterwards. Whatever your particular circumstances, I hope that you may find at least a few things of interest on this site, and, perhaps, some of them may be helpful.

Thanks for your visit today,

Richard Creighton

My Blog

It’s been a while since I have mentioned my blog. I am doing so now because I plan to launch it on January 21. That day will mark seven years since Kate’s diagnosis. I don’t know exactly when I decided to start a blog. I know that I had the idea in the early days of this journal. It wasn’t a serious thought at the time. I only intended to keep a record of our lives since the diagnosis. I didn’t know if or when I might make anything public.

My dad spent his last three and a half years in a skilled nursing facility following a stroke and several seizures. Prior to that, he had been a very active email correspondent. The stroke left him unable to use his computer. He had a list of 40-50 people to whom he sent email, mostly the kind that others had forwarded to him. I decided to keep up with these people by sending regular emails updating them on his life and how he was doing. I did this under his name with “And Scribe” typed under his name. In an early message, I explained that it was I who was writing the messages based on what I thought he might say if he could type them himself. I kept that up until the day he died. When I looked back at those emails, I saw that it was a beautiful account of his last years. It was filled with all the highs and lows of his life as well as everything in between. I copied all of them and the replies in a Word file with the thought that I might some day put them in a book. I actually did create an electronic book  although I have never published nor distributed it. That is something I still intend to do, probably on his next birthday on which he would have been 105. It was those emails that initiated my serious thoughts about a blog to capture our own experiences living with Alzheimer’s.

About two years ago, the idea began to take shape. I had read more about others’ experiences with Alzheimer’s and also talked with more people about our own. Upon hearing that I was keeping a journal, people often said, “You ought to write a book.” That provided an additional impetus to publish the journal in some form. Given today’s online world, a blog seemed a natural way to share it.

My first step was to secure an appropriate URL (LivingWithAlzheimer’ I did that in November 2016. Since then I have been waiting for the right time to launch the site. Originally, I thought it would be in late summer or early Fall 2017. I soon discovered there were lots of things I had to do or consider before that would be possible. I enlisted the help of a friend and former colleague, Mark Harrington. He is a multi-talented guy who early in his career worked for a publisher before working as a writer in my company. He left us to work on his own as a writer and IT consultant. It is through him that I have been able to make it a reality. Mark has taken care of all the technical aspects to get the blog online. He has also been a great sounding board for me as I dealt with the many details that are required.

One of the things he recommended was that I read what I had written, something I had never done. I felt that he was right, but it is now over a thousand pages. That’s a lot of reading, and I haven’t yet read everything. In its present state, the site has the look it will have when it is launched to the online community. As of today, Mark has uploaded 706 journal entries. Among those, I have read, edited, and “published” 426. That leaves me with another 280 to read and edit before publishing. Mark has about a year and a half of entries to upload so that I can do my review and editing. There is no way that I will be able to do this before the launch date, but I am trying to get as much as possible done before then. I could, of course, change the launch date; however, I decided that many people will just read the current posts. I don’t expect many to start at the beginning in 2011 and read consecutively through the entire journal. No one is likely to do that.

I expect that 600 or more posts will be ready by the launch date. In addition to posting new entries, I will continue publishing the older posts that I have not completed by that time. Readers (assuming there are some) will be able to read just the new posts or read older posts by selecting them by date or category. I hope that will enable readers to pursue the subject matter that best matches their interests.

I have no idea how many people will visit the site. Even if no one does, I will feel good knowing that I have created an account of what living with Alzheimer’s has been like for Kate and me. It would be nice, however, if at least a few found it relevant to their own lives.

Passing Time on a Cold New Year’s Day

I have often commented on our normal daily routine and how it seems to have worked for us. The flip side of that is the potential problem that can come up when our routine is broken without having alternate activities to take up the slack. Today is one of those days. It is simply too cold. This morning it was about 29. This afternoon it is in the low-30s. That means that Kate has not been outside working in the yard. It is hard to overstate how important working outside is for her. She can do that much longer than working on her iPad. We both refer to it as her therapy. I clearly believe it is the only thing she does that doesn’t demand that she play by any rules. There are no time constraints. No one rushes her. No one tells her that she is doing things the wrong way. Possibly the most important thing is that she believes she is making a positive difference in the yard.

When she can’t work in the yard, that puts a little more pressure on me to entertain her. I addressed that this morning by building a fire in the fireplace in our family room. She and I both have always enjoyed a fire. She used her iPad to work puzzles, and I worked on my computer. I put on some soft music that she would enjoy. It was a very pleasant time. It provided a nice break between our visit to Panera and our lunch.

I wondered how things would go after lunch. Would she attempt to work outside despite the cold? Would she want to go back to Panera or to Barnes & Noble? Would she want to return home and enjoy another fire? My preference was to go home. Fortunately, that is exactly what she chose. After I got the fire going and music turned on, I made a quick trip to the grocery store. I am happy to say that she was still sitting in front of the firepace when I returned. Not only that, but she didn’t get tired of that until 3:00. That is an unusually long stretch for her to be entertained with her iPad.

At 3:00, she looked at me and asked, “What can I do?” I asked if she would like to get out of the house and go to Panera or to Barnes & Noble. She wanted to go to Panera. Before leaving the house, she said, “I could go to the restroom there (Panera).” I told her she could go at the house if she wanted. She said she would do that but didn’t. When we got to Panera, she went directly to the restroom.

When she returned, it was clear that she had been thinking about our past. She talked as though she and I had been talking about Madison where I had been a graduate student at the University of Wisconsin. Her first comment was to ask “the name of that man.” I had no idea who she was talking about. Then she said something about Madison, and I asked if she were talking about the English professor for whom she worked the first two years we were there. That turned out to be right. She talked about how brilliant he was and how approachable he was. She really enjoyed getting to know him. She said she thought Madison had changed her life. I told her I felt the same way. I got up to go to the restroom. When I returned, she said, “I want you to know that I never loved anybody but you.” Then she added something that surprised me. She said, “I admired Mr. Biederman, but I never loved him.” I was surprised because it had never crossed my mind that she might have loved him and wondered what made her think of that now – fifty years later.

We have been here (Panera) almost an hour and a half. She seems quite content, but I have to believe she is going to want a change pretty soon. I am feeling pretty good that we have almost filled a full day without any difficulty keeping her occupied. I wonder what will happen tomorrow. It is supposed to remain cold for the balance of the week.