A Whole New Me:
By Les Dennis, Ph.D

Posted 17 June 2003

Editor's note: Reprinted with permission from Perspectives - A Newsletter for Individuals with Alzheimer's Disease or a Related Disorder. Les Dennis was diagnosed with Alzheimer's in January, 2000. His first article appeared in Perspectives in November of that year. Since then, he has been writing his autobiography

Barbara and I have been married for 45 years (isn't that amazing!). We have two sons, and we have had six grandchildren, one of whom died. I have had many occupations: paper boy, freight handler, railroad clerk, labor leader, grade and high school teacher, CIA operative, lobbyist, professor at Loyola University, Chicago, and many more. I earned my Ph.D. from Loyola at the age of 61. I have traveled all over the world, from the Arctic to the Antarctic. I have been in 79 countries so far. I haven't done time, yet. Anything else?

Me

In the academic year '97-98 I realized that I was regularly forgetting things. I would have to go up to the 12th floor where my office was and then down to the second floor for teaching. I would discover that I had left material on the 12th floor, and I would have to go up to the 12th floor to pick up things that I left. I knew something was wrong, but I tried to hide it. I had finished my dissertation and was accredited, but I felt totally worn out. In 1998 Barbara began to see a personality change as I got angrier and angrier. Things were wrong with me - I was crabby, had lost my ability to read, and was getting feedback from my family that my driving was not very good. I resisted when Barbara and my sons pushed hard to see what was going on with extensive medical testing in 1999.

We went to the Northwestern Medical Hospital in Chicago and went through many procedures. It was clearly something in the brain, and I definitely had dementia. I was diagnosed as early-onset Alzheimer's with frontal lobe problems in January, 2000. I did not understand any of this, and I did not want to understand. The diagnosis was horrifying. First I thought it was an almost instant death, which I could prepare for. Then I found out I could live many, many years, like Ronald Reagan. That was beyond horrifying to me. I did not want to be an automaton. I wanted to die, and quickly. I was strongly suicidal, but I tried to cover it from my family. I went down very deep into a pit that I felt must have been built by me. Nothing was right. I could not read or write. The computer, my very old friend, was something I could not comprehend. I was a slug. Some of the medicines were terrible, making me sleepy day and night.

Finally, one day, I woke up. I sat at the computer and finally started typing. I was hot. I was really going. Then I did a spell-check and I was horrified. It was all garbage. Nothing made sense. Slowly, very slowly, I have hobbled my way back to writing. Every two lines, I do spell check. I only check those two lines. Then I go on to the next two lines. It is slow, slow, slow, but it does work. I also regularly go back and catch some of the mistakes I did not see at all. Isn't AD a lot of fun! Why do I use the two-lines method? It would embarrass me endlessly otherwise. I just can not do it any other way. Is it pride or pain? Probably both.

Memory

An interesting thing has happened in the process of writing this long autobiography. I believe I am gaining memory! I began inserting pictures in my biography. It seemed weird at first. But pictures, it seems, connect me back to things I have forgotten. Suddenly, I have been flooded by memories of family and things I had forgotten, all largely because of the "assault" of pictures. Connections seem to be getting better. It also seems that sitting at the computer is slowly bringing back computer skills I had completely forgotten. Who knows what will happen under the auspices of AD?

The most difficult part of AD is memory loss. I can recall many long-term memories, but few current memories. Words that I used yesterday can be gone tomorrow, or even right now. Many times I know exactly what I want to say, but it does not come out in the same way. My ability is, at best, sporadic. (Note: the previous six words took 12 minutes to write). I often forget the beginning and jump to the end. Or, I often just forget what it was in the first place.

Support Groups

Support groups are probably good for most everyone, at least occasionally. I was never a fan of them, but when I went to my first group, I had just lost my right to drive, and I was pretty angry. I felt they were a bunch of strange people, but I went along. The one really good thing was when we mixed the patients and the caregivers together. That produced an expression of need by the patients that the caregivers had not noticed. When the opportunity came to go to the Northwestern University's ongoing support group, I jumped. Darby Morhardt, a social work-er, is in charge of the group and she seems to know a great deal of our problems and concerns. Our group is diverse. We have about 16-17 members and we have developed a camaraderie that is deeply intertwined. We can talk openly. When one has a problem, all try to help. When there is a sickness, we console. The caring and concern is obvious and beneficial. We are also very funny. We laugh with each other, and we laugh at the disease. We often have a dark humor riding with us. All of us patients look forward to the weekly one and a half-hour meeting.

The Buddy Program

Northwestern also has a marvelous system for new medical students. They are encouraged to connect with a selected Alzheimer's patient for their first term. The patient and the student learn from each other. My buddy is Jeff Craft. This is our second term, and it has been a great experience. We go to movies, go out on excursions, visit at home, and so on. It is a great way to teach would-be doctors to understand patients. Jeff is one of the brightest people I have known, and I know he will be a great man when his program is finished.

Me and Jeff

Change

Through this period of AD, I have changed significantly. I understand people a lot more. I am far more mellow than I have ever been. Some friends have run away and many others are very good to me. When they ask about AD, I explain it as best I can. In some cases, I have to explain to others why I can't get some words out or seem confused. I am concerned about people who have the disease. I have a desire to help people with AD and ease them into a better sense of their disease. I have also had people ask me if perhaps they have AD. I let them talk more and then I simply say 'Well, it appears to me that you have it. But then, I am not a doctor, and neither are you.' I suggest that they do not go to a family physician but instead, to a neurologist.

People often ask me what advice I would suggest to help people with AD. First of all, if you are a medical type, shut up and try to listen to the patient. You might actually learn something of value. If you are a patient, be assertive. You must make them realize that you are a real live person, and you want answers. If you do not get answers, find a better doctor. If you are a caregiver, I am truly sorry.

If you are at the stage where you can travel, do it! We have spent money on travel and it is worth it. Why not get out and do those things you have always wanted to do? If you can't do that, almost anything's better than sitting around. Why die on a gurney? You could have been written about in the AARP bulletin like I was (March, 2002, Diagnosing Alzheimer's Early Can Pay Off). There is a great big world out there, and I have seen a lot of geriatric types out there doing things. Walk. Run. Push your buttons! I love gardening, so I volunteered at the Garfield Park Conservatory in Chicago (see photo on front page).

Although I loved teaching and many other things I did, I really find lots of things to do and ways to help people. So, this is me, now. It is a long, way from the paper boy I was, or the labor leader, or the CIA operative. I am kinder, gentler, and I hope I have expressed my desires to my family. I feel they will respect them. Until that time, I'm getting out and doing things, always!

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Contact: LISA SNYDER, MSW, LCSW
Publisher and Executive Editor
Alzheimer's Disease Research Center
University of California, San Diego
9500 Gilman Drive- 0948
La Jolla, California 92093
Phone: 858-622-5800
Fax: 858-622-1012
Email: lsnyder@ucsd.edu