Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, June 5, 1995 TAG: 9506060086
SECTION: VIRGINIA PAGE: A-1 EDITION: METRO
SOURCE: ANDREA HAMILTON STAFF WRITER
DATELINE: NEW YORK NOTE: BELOW LENGTH: Long
Frank MacShane opens the door, bewildered but gracious. He doesn't know who his visitor is, but ushers her in anyway and asks for help.
He's misplaced his wallet, and he has a handful of cash and credit cards he needs to put away. The wallet is found 10 minutes later in the bedroom. He tries but he cannot insert the contents, so the visitor helps.
That settled, MacShane, 67, pauses to smooth his charcoal-gray slacks, adjust his blazer and ask the visitor to remind him what she's doing in his home. And who is she? he inquires, in the deep professorial voice that discoursed on literature and writing for 25 years at Columbia University.
She is there to discuss MacShane's life and how Alzheimer's disease is slowly overtaking it.
Of course, he says. MacShane's discomfort recedes as he settles into a chair and proceeds to talk engagingly about his years as a professor and the books he has written, including biographies of Raymond Chandler and John O'Hara.
He pauses frequently in midsentence to grope for the words that he says run around corners and hide from him. ``It's this damned disease, you know,'' he explains.
More and more Alzheimer's victims are like MacShane, people who fall into a relatively new category called ``early diagnosis'' who are very much aware they are becoming shells of their former selves.
In the past, senility was a catch-all term used to describe older people who had memory and thinking problems; when they could no longer take care of themselves, many were shipped off to nursing homes. But Alzheimer's is a very specific disease, caused by lesions on the brain.
Only an autopsy can give 100 percent confirmation of the disease, but increasingly sensitive tests can confirm the scourge with 95 percent accuracy. It is because of these tests, and greater awareness of Alzheimer's, that people are being diagnosed long before they are incompetent and need 24-hour care.
When the Alzheimer's Association was founded 15 years ago, its primary mission was to help relatives make sense of what was happening to their loved ones. Support groups for caregivers flourished.
But with early diagnosis, many of the 4 million victims across the nation began asking their own questions, and now support groups for them are burgeoning.
``Many of these people can't work anymore. Friends have disappeared. Maybe they've begun to feel like a nuisance around the house. Other people in a support group understand this,'' said Robyn Yale of San Francisco, a clinical social worker who has written two training manuals for patient-support groups.
An Alzheimer's support group in Manhattan declined to allow a visitor to listen in, but two members, MacShane and Cal Stadlen, agreed to be interviewed individually.
According to figures from the Alzheimer's Association, 5.8 million Americans over the age of 65 will have the disease in 10 years, and 14 million in the year 2050.
With early diagnosis, many people live eight to 20 years with the disease, and are mildly afflicted for some time.
For these people, there is still plenty of living to be done, and support groups can inspire them to press on, said Anita Sanborn, executive director of the Denver-based Rocky Mountain chapter of the Alzheimer's Association.
MacShane and Stadlen see their support group as a refuge, a place where they are learning to lose their minds with dignity and humor.
Stadlen, an elfin man with a white goatee, looks much younger than his 80 years. He can't remember what he did yesterday. But he remembers the house he lived in as a little boy. It was in Coney Island, on Mermaid Avenue, and the shower was out back in a shed.
Stadlen has accomplished much since then. He's been married for 54 years. He's had a career producing television commercials, traveled the world, designed and built two homes. He was a sailor and a photographer.
But this once-full life is nearly empty now.
Stadlen doesn't know what day it is when he wakes up in the morning. He has trouble putting a key in a lock or opening a can. He once was one of the enviable people who filled in the Sunday crossword puzzle in ink. Now, he is stymied by the simplest words.
He recently forgot where he was going when he left his co-op apartment in Chelsea, so he rarely ventures out by himself anymore. When he does, he carries a note explaining what he's supposed to be doing.
``The world hasn't shrunk. My role in it has,'' Stadlen said. ``Suddenly, there is nothing.''
His wife, Florence, said the support group helps fill this void, so much so that her husband's week has come to be defined by the meeting.
The groups vary across the country. The focus of the Manhattan group is sharing sadness and trying to come to terms with the disease. Others are forums for socializing, learning how to establish routines to make life easier or discussing plans, including living wills.
``It was quite a relief to find that the other people in the group weren't a bunch of morons, as I sometimes consider myself to be,'' Stadlen said. ``They are lovely people, even in their illness.''
Rea Kahn, support group coordinator for the Alzheimer's Association New York City chapter, has watched many patients approach groups with trepidation.
``There is a huge sense of loss, many fears,'' she said, ``but then they come here and realize they are not alone. They can let down their guard.''
That's comforting for Stadlen and MacShane, but not for MacShane's only child, Nicholas. For more than three years, he has mourned as he has watched his father decline.
At first, there were jokes about his father being an absent-minded professor. His father would say he was too busy thinking about weighty matters to remember names or dates.
But then he couldn't tell time. He couldn't tell the difference between $5 and $500, and he was practically giving money away. Next, he started throwing pots and pans away after he cooked, and calling Nicholas to say he had lost his black poodle, Lily, who always turned out to be at MacShane's side.
Nicholas finally persuaded his father to allow a housekeeper in eight hours a day, and now he hopes he will relent and let the woman, named Rita, move in.
But there is little comfort for the 27-year-old son in this arrangement.
``He's become a prisoner of his own mind. And I am the son who is forced to hire the warden to follow him around and keep him in line,'' Nicholas said.
His father has talked about suicide, but lately has begun latching onto illusions for hope.
``He thinks, `If I can just get rid of Rita, I'll be cured. If I could just start writing again, I'll be fine.'''
These days, Frank MacShane says a good day is when he's with his support group.
``I have the feeling that life is OK. Nobody's cheering, but at least it's OK,'' he said.
``Underneath all of us, there is a lot of angst, and sometimes we're willing to say what's going on, to tell the truth. We have fears, you know. We're all afraid the day will come when they have to put us in a box, or whatever they do with people who can't think or speak anymore.''
As his visitor prepares to depart, MacShane asks for instructions on how to turn on the radio in case he wants to listen to it in the evening.
There's a big red on-off button and he punches it a couple of times.
``Well,'' he says with a doubtful smile, ``that looks simple enough.''
by CNB