Ellen Young believes in finding the positive even in the worst of times. That's why the retired Lutherville social worker wrote "Between Two Worlds -- Special Moments of Alzheimer's and Dementia" (Prometheus Books, $24.95). The book, which will appear in stores next month, encourages Alzheimer's caregivers to laugh and find joy amid the hardships of dealing with the disease.
From her own experiences with her aunt, who died of complications from Alzheimer's at 85, and those of her mother, Mary Alice Parks, 88, an Alzheimer's patient at Keswick Multicare Center in Baltimore, Young wanted to share her survival strategy with other families to "lighten their load."
"When things get really rough, a caregiver has a decision to make," says Young, 62. "Either you're going to laugh or have a nervous breakdown. As a caregiver, you want to be strong and as emotionally healthy as possible. Laughing is an antidote to pain, and it doesn't cost us a nickel."
About 4 million people suffer from the insidious Alzheimer's, but projections estimate that by 2050, 14.8 million people will have the disease as the population continues to live longer, according to the Alzheimer's Education Referral Center in Silver Spring. Almost 48 percent of the population now over 85 has Alzheimer's.
Writing the book provided a cathartic experience for Young, who is contributing all proceeds to Alzheimer's research. She learned within an 18-month period 5 years ago that both her mother and aunt had Alzheimer's. Both started showing symptoms at 80 -- Young's mother would repeatedly call her to remind her of the same thing.
"I wanted to work through my own sense of grief and loss," says Young. "I felt totally devastated. I'm losing my loves. I adored my aunt and mother. We were like the Three Musketeers. And now I was losing two of them."
At the time, Young was already confronting her own mortality: She had been diagnosed with breast cancer and was undergoing chemotherapy treatments.
As a social worker for many years at Union Memorial Hospital in Baltimore, Young had worked with Alzheimer's patients and families, helping with the difficult decision to find long-term care. She was familiar with the cruel face of Alzheimer's.
But as she listened to her mom and aunt banter, she began to find solace in their humorous comments.
"They were so adorable," she says. "They laughed and teased each other. Each accused the other of forgetting things."
Young would chuckle at them, and they would laugh, too. Soon they were all feeling better, she says.
In the book, Young relates a conversation with her mother, a longtime fan of Ronald Reagan. Young explained to her that she and Reagan have something in common -- Alzheimer's. Her mother's response: "I have? He has? Well, Nancy will just have to be jealous!"
Young began recording the humorous conversations to reread when she felt depressed, and realized other caregivers must have similar experiences. She mentioned to Cass Naugle, executive director of the Central Maryland Chapter of the Alzheimer's Association in Baltimore, that she wanted to write about the "cute and funny things" Alzheimer's patients say.
"I was hoping someone would do that," Naugle replied. Young says that gave her the courage to make her dream a reality. The book includes conversations between Young's mom and aunt and the experiences of other caregivers -- both funny and sad.
A husband tells about his wife hiding rolls of toilet tissue and then one day dumping 26 rolls on the bed. He was amazed she could remember where she had hid them all. A daughter recalls her mother periodically not recognizing her father and screaming for him to get out; he had to go to a neighbor's house until her memory returned.
Young devotes a chapter to "Clara," who in her dementia pleads with and swears at furniture she thinks is a person, and who refuses to believe that her son-in-law Tom is not her dead husband Ted come back to life.
At first glance, the notion of laughing at an Alzheimer's patient seems insensitive, but doctors say it eases a caregiver's stress and buoys the patient.
"It's a terrible disease that robs you of that person long before they are dead," says says Dr. Debra Wertheimer, a geriatrician at Levindale Hebrew Geriatrics Hospital and Center in Baltimore. "For that reason, it's important to find anything that makes you smile or laugh and relieves the tension."
Says Dr. Allen Genut, a neurologist in Baltimore who sees about 100 Alzheimer's patients each year: "Remembering the lighter moments gives loved ones something positive to remember about the patient."
So how do you find something humorous when a loved one is spiraling downward?
"The disease is deadly serious and tragic," says Genut, who wrote a forward for the book, "but in the context of daily life, these patients do some extremely funny things, like singing at the dinner table, or a 91-year-old woman who thinks this man, her son-in-law, is trying to take her out on a date. She doesn't really understand what is going on and she's no longer in touch with reality, so she makes it and creates her own little world."
That makes for some special moments, Genut says.
That's what Clara was doing in trying to identify her son-in-law Tom as her husband Ted. The conversation went like this:
Tom: "No, Clara. I'm not Ted, I'm Tom."
Clara: "OK, so you've changed your name."
Tom: "No, Clara, Ted died over 20 years ago."
Clara: "I know, and you came back."
Tom: "Clara, Ted was shorter than you are. See how much taller I am?"
Clara: "Sure, you've changed your height, too."
Wertheimer remembers a patient who knew all the stanzas to the old Chiquita banana commercial jingle. "She would constantly sing every verse. It was sad because she was very elegant, very intelligent, very accomplished and very demented. For a full-time caregiver that could be very wearing, but for an interim caregiver, it could be funny. ... You're not so much laughing at the person but at the presentation of the disease."
Still, caregivers may feel guilty. "Families are uncomfortable about using humor because of the loss of dignity caused by the disease," says Dr. Paul Fishman, a neurologist and professor of neurology at the University of Maryland and a board member for the Central Maryland Chapter of the Alzheimer's Association.
Humor is easily accepted as a healing agent for cancer patients because "The patient has his or her mental faculties intact," he says, but "it's hard to laugh at someone who is losing dignity. Humor is not a show of disrespect. It will not harm the Alzheimer's patient's dignity."
Young says the laughter is lifesaving for a family. "A family becomes focused on only the negative and goes through despair, a collective dark night of the soul when faced with Alzheimer's. This book serves as an antidote, to bring some balance, some reality and a healthy outlook back to the Alzheimer's involved family."
Young's mother has been in a nursing home for six years. Young knows to enjoy the joyous moments. Her mom can't walk because of osteoporosis. Her speech is mostly garbled, her memory fading. But she recognizes Young when she visits. At the end of a visit, her mom "puts my hand on her cheek and says, 'I love you.'"
That's a moment Young cherishes even more than the laughter.
"Between Two Worlds -- Special Moments of Alzheimer's and Dementia" (Prometheus Books, $24.95, 230 pages, hardcover) can be pre-ordered through Prometheus Books at 800-421-0351.
Pub Date: 05/02/99