Q: Five years ago, you were diagnosed with dementia, probably of the Alzheimer’s type. Your essays describe the vast changes in your life since your diagnosis. Would you share a few examples?

There have been huge changes in the order and sense of freedom in my life. I am at risk, and so are others, when I drive. Therefore, I feel, act, and am like a prisoner in my own home. I am completely subject to others for a pass to visit the outside world. I cannot manage money very well; even transactions at cash registers are sometimes confusing. Therefore, I have no money of my “own”, and I feel, act, and am like a prisoner of others to spend money to meet my own needs and wants. I am at risk for wandering and/or forgetting what I am doing at any given moment, which puts others, like my young grandchildren, at risk. Therefore, I can only spend supervised time with my grandchildren.

Q: Your journey with Alzheimer’s disease began after your daughter visited and noticed, “There is something wrong with Dad.” What changes did she notice? What steps did you and your wife take as a result?

There were subtle changes in my personality that people who interacted with me on a daily basis did not notice, but which stood out like sore thumbs to my daughter. To her, I was suddenly more argumentative, defensive, and sometimes even hostile to other people and their ideas. I was more dominant in conversations (an unconscious attempt to cover up for my lack of concentration), especially in those with more than two or three people. I did not listen as empathetically as I formerly had. I simply was not in her mind and heart the same “Dad” with whom she had grown up.

At first, my wife and I did nothing with the information but puzzle over it. Six months later at my yearly check-up with my internist, I mentioned my daughter’s concerns. He acted on the information and sent me to a neurologist who then sent me to a neuropsychologist. One year later, the diagnosis of Alzheimer’s disease was officially made.

Q: Alzheimer’s disease is a progressive disorder. Your essays do a wonderful job of describing your symptoms and your reactions to them as the disease advanced. How are you doing today, years after some of the essays were written?

The disease seems to progress in uneven ways and at an uneven pace. I go for a while and don’t seem to notice any new or more significant difficulties in thinking. Then I seem to drop off a cliff, free fall for a month or two, and land on another plateau.

My concentration has noticeably slipped. I am always in the midst of doing 10 things at the same time. Currently, I seem to finish a few of them, only to start 10 more. When I write there are now obvious breaks in my concentration. I jump from subject to subject. I can seldom recognize or understand my own errors in my writing and speech. Lately when people point out the errors I still cannot understand them. Word retrieval, especially when speaking, is becoming an annoying and more frequent problem. My personality is more volatile and sometimes changes abruptly. Interaction with others is still stimulating but it more quickly reaches a point where I tire and lose my ability to concentrate.

Q: Soon after your diagnosis, you began writing about your experience with Alzheimer’s. How has writing helped you to accept and cope with your diagnosis?

I am not sure that my writing has helped me accept the diagnosis, but it sure has helped me cope with it. I feel okay (actually more okay, as much as the disease allows) when I can see, read, and re-read what is going on inside and around me. It is easier for me to feel better about myself when others in similar circumstances agree with what I am writing. I know I am not alone. Writing helps me integrate what I know and what I feel, and then re-check it by re-reading.

Q: One of your essays addresses the issue of family members and friends disabling you, rather than enabling you. What do you mean when you say they disable you? How can caregivers enable people with dementia instead?

I want to be all of who I once was for as long as I can (at least that is my feeling right now). I want caregivers to enable, help, and support me to be the parts of myself that I can no longer be by myself.

If I can’t be alone with my granddaughters, at least according to the fearful eyes and hearts of my caregivers, then instead of them simply saying “no, you can’t do it,” I want my caregivers to work with me so I can alleviate their fears of what might happen if I’m alone with my granddaughters. I do not want to feel like I need a chaperone all the time. I do not want to feel like I cannot be trusted. Watch me at a distance. Put me in an environment where I cannot wander away. But, do not just say "no."

Q: Who is your primary caregiver as your abilities decline? What is your relationship like? Is it changing?

My spouse is my primary caregiver. My son left the air force and moved his family across the street to be closer to us. This disease is as stressful on the caregivers as it is on the person with the dementia, just in different ways. My family is not the exception to the rule.

Our feelings are more volatile now. Fear magnifies our emotions, mostly in a negative manner. We argue more about less and do so more intensely. It takes longer for us to figure out what just happened and sort out the moment from the fear and the Alzheimer’s.

At the same time, we are closer. We spend more time together. We talk more, we hug more, we cry more, we laugh more and harder and longer together.

Q: The essay “What’s the Up Side to Having Alzheimer’s Disease” describes the positive changes in your life since your diagnosis. So, all the changes haven’t been bad? 

I am not sure one way or the other. If you paint a masterpiece because someone is threatening to harm your spouse, is that a good thing? If you suddenly start to enjoy today because you are constantly fearful that there may be no tomorrow (even though you don’t admit it to yourself or others), is today better than a month ago? Yes and no? Yes, some things have changed for the better, temporarily. Ask me this tomorrow and I may have a different answer.

Q: In one of your essays, you write that people sometimes say “you don’t seem like you have Alzheimer’s disease to me.” How does this comment make you feel? How do you respond in these situations?

At first, it was confusing. What should Alzheimer’s disease “seem” like in me? Then it became reassuring. I knew I had the disease but at least others did not see it in me. Then it became annoying. How does anyone know if you have a cognitive disease unless you are falling down or can’t speak? Then it became disconfirming. I know for sure that I have the disease; I live with it every minute of the day between my ears. The fact that I am good at covering up the disease unconsciously doesn’t make me feel any better. I know it is getting worse.

Q: Why did you decide to share your essays with others? What do you hope readers will get out of your essays?

I started to write to confirm for myself that I was still okay. I showed a couple of pages of writing to family and friends and they seemed to find themselves in the issues I was writing about. As I showed my writing to more people, more and more of them said they found personal value in it.

I hope that by reading my essays people who share my disease find that they are not alone with their thoughts and problems. I hope caregivers find better insights into their loved ones who may not be as talkative and verbose as I am.

Q: You have become a powerful advocate for people living with Alzheimer’s disease. Why have you chosen to spend your time speaking up and speaking out?

I believe people who live with the diagnosis of Alzheimer’s have an obligation to each other and to themselves to speak up and speak out about their treatment, feelings, and concerns. If they do not or if I do not, who will know how we feel? Who will know what it is like to have Alzheimer’s disease? Cognitive diseases are by definition uniquely more difficult for others to treat and even imagine. We are all limited by our own mind’s ability to know and to imagine.

Q: What are your hopes for your future and the future of Alzheimer’s care?

I have given up hoping about anything, even my own future. I try to live in the present and wring as much joy out of it as possible. I gave up worrying about my future because I was pretty sure I knew what it would be. Thus far, it has not been as bad as I had anticipated.

There are governmental and institutional decisions that are going to be forced upon our society and upon those of us with the disease by the sheer number of people that will live with the diagnosis of dementia, probably of the Alzheimer’s type. I am pretty sure these will be the wrong decisions when measured against human dignity and the enabling of individual human beings to be all they can be for as long as they want to be. But for now, for me, care is an individualized experience. I am focusing on me and those like me who are with me, now.