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'A surprising and cruel blow'

Diagnosed with Alzheimer's, one is adrift in anger, anxiety-and left to accept what cannot be changed

By Bill Orme-Johnson, Globe Staff, 4/8/2001

The National Alzheimer's Association last week warned of an "imminent epidemic" as up to 14 million of today's baby boomers develop Alzheimer's disease. For most of them, the process that will eventually destroy their memories, their lives, and their savings has already begun, the report warned. It urged Congress to invest in research now.B ehind the policy and health care considerations are personal stories. Here, one man tells his.

I know that I have a progressive, irreversible brain disease that has no cure. I will die from it. My father also had a memory disorder, diagnosed as senile dementia when he was in his 70s. In the early stage of his illness, he started coming home and taking midday naps, just like I did, so I suppose in some ways I should have expected this, or at least recognized the symptoms. Denial is often a helpful coping strategy in the beginning.

I now understand the shame my father must have felt. He was a brilliant engineer, a very smart man, and a great card player - in fact, a professional gambler. But when he began to lose his skills at the card table, his friends started shunning him. Later, as the disease progressed, my father withdrew inside himself.

I also remember how necessary it was to be very patient with him, especially when he was speaking. I sometimes wonder if I have become difficult to communicate with, and if I, too, am testing the patience of my family and friends.

My own diagnosis came almost five years ago, in June 1996, when I was 58. For the two years before that, I remember being very tired, so tired it was hard to do my job as a professor of biochemistry at the Massachusetts Institute of Technology. My lunchtime naps grew longer and longer and started to take over my life. My ability to take initiative in my job was gone.

At the same time, I became short-tempered, disorganized, and could no longer handle my workload. My family, colleagues, and friends were concerned, and at their suggestion I saw a psychiatrist, who treated me for depression.

But my symptoms grew worse over the next year, and my wife consulted a neurologist at Massachusetts General Hospital, where after a battery of tests I got my diagnosis of dementia - probably Alzheimer's disease. Even though I had known something was wrong, the diagnosis still came as a surprising and cruel blow.

It soon became difficult to focus on any task long enough to complete it. The disease forced me to stop publishing research articles and mentoring students, which was a major part of my job. My supervisors suggested extended medical leave. I finally decided to take an early retirement.

Early retirement meant an end to my life as I had known it. I felt, and still often feel, like I am no longer an adequate adult. And I was very angry - at my colleagues, at my diagnosis, and at how my life was changing. I had to give up many outside activities such as board memberships, being executor for my mother, and some church activities. It was a real killer to have to admit to myself and to my family that I could no longer undertake those responsibilities.

I felt crushed by my realization that I could no longer drive safely, and depressed when I had to give it up. I am now homebound unless someone takes me out, adding to my feelings of profound dependence on others.

At MIT, when I started showing changes and symptoms at the start of my disease, I felt the same lack of support my father must have felt. I think that everyone thought that I was lazy and just avoiding work.

In such a brainy environment as MIT, a disease such as dementia seems especially threatening. I wondered whether my colleagues worried that what I had might be contagious. When you are valued for your brain power, losing it makes you feel more than just devalued; it makes you feel worthless.

When I was diagnosed, I remember feeling some relief knowing what was causing the changes in me. At first, I was grateful that I didn't have something more life threatening, such as a brain tumor. I also felt, at the time of my diagnosis, a real fear for the future for myself and for my family, even though I already knew that my wife, Carol, is a brilliant coper.

Now, after more than four years, I feel that my situation is stabilized. We have learned a great deal about my disease, and there is power and comfort in this knowledge and understanding of why I do certain things and what lies ahead.

Alzheimer's steals one's abilities in a particularly cruel way. On one hand, I remain able to communicate complex thoughts at most times, to write and read. I can still play the guitar, plucking away at my folk music and singing along. But, at the same time, I am unable to perform some of the most basic of daily tasks; for example, I cannot set the table. I often become disoriented and cannot find my way from one room to the next.

It is hard to be so keenly aware of how many simple things I can no longer do - to so often reach for a memory or a word, only to find it gone.

The unevenness, this seemingly arbitrary pattern of loss, makes the disease particularly hard for others to understand.

People who have Alzheimer's are only the most visible victims of the disease; their families are very much victims also, and that is certainly true in our home. My wife - a former trial lawyer who is now an assistant dean of students at MIT - has the difficult extra burden of caring for me, as well as for our three daughters, Dolly, 16, and twins Maggie and Ruth, 13.

My family no longer has a fully functional father or husband. The fact that I can't drive and don't work anymore symbolizes for me my lack of ability to provide for my family. I am unable to do everyday household chores.

As nurturing and understanding as my family is, it has been very painful to lose my role as guardian, and I worry about not doing my part financially. I feel, sometimes, that my children no longer regard me as an authority figure and they look to their mother for advice and guidance. It has been very difficult to be protected, rather than be the protector.

Yet I believe that my family will be stronger and more compassionate for our experience. I have moved beyond depression and anger, and reached acceptance of my disease - at least most days.

I have found friendship and support in places I never thought I would. About three years ago, my wife and I joined a patient support group at the Alzheimer's Association in Cambridge. It has been a tremendous help. The group is for people with early-onset dementia, under the age of 65. Because we're younger than typical Alzheimer's patients, we have different family and financial issues and our caregivers are spouses, not children.

The group is a safe spot in my life, and I look forward to returning there every two weeks. It involves me in a very deep and emotional way. I can talk freely about anything, and feel that all the members are my friends and soulmates. We talk about coping, caring for our families, and our feelings - from anger to sadness, fear and, often, joy. We learn about our memory loss illnesses, new research, and strategies for coping.

It is extremely gratifying to realize that even though we have a memory disorder, we can be a crutch, a listener, an advice-giver, and a friend to others. For me, that offers much validation. And the easy humor and camaraderie of the group is a great comfort to us all. We laugh a lot.

About two years ago, Carol suggested I go to the Boston Alzheimer's Center day program in Jamaica Plain, because although I was safe at home, I had nothing to do, so I often slept all day. At first I was apprehensive; the center represented something negative to me, because I was less clear about what my needs were at that time. But I went, and I am happy with that decision. Now I lead my own guitar group once a week, and am able to stay more active physically, mentally, and emotionally. Being involved and accepted makes anyone feel more positive about themselves; it's no different for people with Alzheimer's.

I have also found ways to help cope with the effects of Alzheimer's. One is by leading an orderly life. That is a challenge, of course, when living with teenagers, even without a diagnosis of dementia. But, with Carol's help, I have benefited by having a regular routine, such as going to places at the same time, on the same days. I don't leave home without my organizer and a notepad.

I know how important it is for me to retain and use what I have. Through the support group, I have spoken to groups of people with memory loss, caregivers, physicians, and college students. It has been very gratifying for me to know that I can still be a "professor" of sorts, and that the old brain still does work, at least a little.

If there is one thing that I want to impart to others, it is this: Please remember how terrifying dementia can be. Those of us who have it are fearful every minute of every day, although we sometimes do not show it. We need a great deal of emotional and physical support to help us find and use all that brain power we still have.

I have had many positives in my life since I was diagnosed with dementia. I have reached acceptance of what I can't change, without losing hope for a cure, or a drug to delay changes - if not in my lifetime, at least in my children's.

I have taken some control by learning all I can about my disease but, of course, I am not always able now to remember what I have learned. But one lesson is unforgettable: I have learned that there is strength gained for us in our failings.

Editor's note: Elaine Silverio, an Alzheimer's specialist, assisted in the writing of this article.

For more information or support dealing with Alzheimer's disease or a related disorder, call the Massachusetts Alzheimer's Association, 617-868-6718.

This story ran on page 01 of the Boston Globe on 4/8/2001.
© Copyright 2001 Globe Newspaper Company.