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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.

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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.

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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.

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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. (https://www.alzheimers.net/stages-of-alzheimers-disease/) 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

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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’s.com). 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.

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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.

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Lingering Colds

Kate and I are still nursing the colds we have had for a few weeks. We had been recovering slowly, but steadily, until this week. Yesterday and today, I have been much better, but Kate is worse. The past two nights she has coughed a good bit. She still seems to feel all right. I am glad about that.

It looks like a quiet holiday weekend for us. That is probably a good thing in terms of our colds. I haven’t even made reservations for a New Year’s Eve dinner. I will probably attempt to do that today.

Tomorrow afternoon we have a drop-in to celebrate the 93rd birthday of a woman with whom we sit at our musical nights at Casa Bella. They are also celebrating the baptism of a new baby in the family. I am planning for us to make that unless our colds make that unwise.

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Making Use of Time While the Sitter is With Kate

At the moment and for the next hour, I am at Whole Foods. This isn’t something I planned. It just seemed to be the best option for me right now. I left home shortly after the sitter arrived. Normally, I would have gone to the Y, but I had a meeting at United Way at 2:00. At the last minute, the meeting was changed to 3:00. Then I thought I might get together with Mark Harrington who is helping me with the technical aspects of getting this journal ready to be launched as a blog. He and his wife have recently moved to a new house. It turns out that he has a commitment to meet someone who is doing some work for them.

That has left me in a peculiar situation. I usually have a definite plan for the four hours the sitter is with Kate. Today I didn’t. The good news is that I always have things I can do with my journal. Almost all of them involve reviewing all previous entries and putting them in categories so that readers can sort through them for things of special interest. I don’t foresee that I will finish doing that before my launch date in January.

Having a bit of time that I need to fill is not something that happens very often. I either have plans or I have other commitments that demand my attention. For a while, I was concerned that four hours was not sufficient time for me to do the things I needed or wanted to do. For that reason, it feels funny to leave Kate with a sitter. It is as though I have a sitter but don’t need her today. I wonder if other caregivers ever find themselves in this situation.

That reminds me that yesterday I spoke with the agency that provides the sitters. We were making arrangements for the January schedule. They asked if I would want someone on New Year’s Day. I told them I didn’t.

I just got a call from my contact at United Way. They are now thinking of handling the 3:00 meeting by phone because of the weather. That is fine with me. That may give me a little more time this afternoon.

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My Doctor’s Visit

Yesterday I had a routine appointment with my doctor. Since this was a day when I wasn’t covered with a sitter, I took Kate along with me. This was the second time I have done so. As with other things lately, she didn’t ask why I was taking her. I simply told her I didn’t want to leave her at home.

It was an interesting visit. For the first time, I was given a memory test. This was something initiated by Medicare. I can easily understand the need for it, but I was taken aback by being asked to take it. I had taken Kate into the examination room with me and was curious to see how she might respond. She heard the nurse explain the procedure, but she continued working the puzzle on her iPad. This was a much abbreviated test compared to the ones Kate has taken. It involved two simple questions that I have heard quite a few times. First, she gave me three words to remember. After she said them, she asked me to repeat them to her. Then she asked me to draw the face of a clock followed by drawing where the hands would be for 11:10. That was it. Before she left the room, she asked me to tell her the three words again. I am happy to report that I passed with flying colors.

When the doctor came in, I commented on my taking the test. I told him I could understand the reason for it but felt it was a little premature in my case. Then he launched into quite a lengthy response. He pointed out how easy it is for someone to cover so as to keep others from recognizing their memory problems. Once again, I was looking to see how Kate was responding. I saw her smile, but she continued with her iPad.

That led to doctor to talk about words for various things in room, for example, his lab coat, the lapel on his coat, a pin on his lapel, etc. At one point, he said something that involved English grammar. That is when Kate spoke up and was perfectly correct about her observation. It was an interesting example of what the psychologist had told us during Kate’s testing for Alzheimer’s. She said Kate’s greatest weaknesses would be the things she would lose first, and she would retain her greatest strengths the longest. I would say the psychologist was right on target, at least for Kate.

I had told my doctor about Kate’s diagnosis long ago and have mentioned it to him on subsequent occasions; however, I still wondered if he remembered. He spoke very naturally about Alzheimer’s and it symptoms. It was something he dwelt on, but it was directly related to the memory test I had taken as well as my own remarks about it. Kate never said anything to suggest she even heard any of this. She did, however, pick on the grammatical issue. It reminds me of something she says to me occasionally when I am surprised at something she remembers: “Don’t count me out yet.”

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More On Kate And The Sitter

When I arrived home this afternoon after going to Rotary, the Y, and Whole Foods, I found Kate and the sitter in what we used to call Kate’s office. I now just refer to it as Kate’s room. She still has an office chair, a desk and a printer in there, but she hasn’t used them in several years. She keeps most of her clothes in the closet and uses it as a dressing room as well as retreat when she is tired of being in our bedroom or the family room.

Kate was sitting on the bed, back to the headboard and legs stretched out in front of her, working jigsaw puzzles on her iPad. Anita was sitting in a chair watching something on the TV. I asked if they had been back to Panera. Anita said they had. That would have been Kate’s third time today. I took her for her breakfast muffin. Then I took her there for lunch before I going to Rotary. As Anita was leaving, I thanked her. Then Kate said, “I thank you too. I felt better having you with me.”

I had wondered if the sitter provided Kate with a sense of security. Her comment suggests that she does. Perhaps that is why she has been so accepting. At any rate, it always makes me feel good that she is so comfortable with my leaving her with a sitter.