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Caring for Her Father on His Terms

Family: Maureen Reagan has learned how to cope with her famous father's debilitating illness.

August 07, 2000|JANE E. ALLEN | TIMES HEALTH WRITER

Like other children of Alzheimer's patients, Maureen Reagan has developed new ways to communicate with her dad since his 1994 diagnosis.

During good days when former President Ronald Reagan is laughing and responsive, and bad days when he's not, her behavior reflects the understanding that communication is about making the patient comfortable: "This isn't about us, it's about them."

The 59-year-old daughter of Reagan and his first wife, actress Jane Wyman, recently shared her insights into communicating with the nation's best-known Alzheimer's patient. Although she never lost her composure during an interview, the emotional toll of her dad's illness was clear.

Alzheimer's has narrowed the boundaries of Ronald Reagan's life unthinkably, from the international arena of Cold War politics to a simple routine in the Bel-Air home he shares with his wife, Nancy. As the disease has worsened, Maureen's ways of coping and connecting with him have evolved.

She and her beloved 89-year-old father, once dubbed the Great Communicator, shared a love of politics (she's a former Republican National Committee co-chair) and "were always very gregarious with each other." But because Alzheimer's patients don't react well to loud voices, the former actress and talk-show host has learned to tone hers down. Discussions of politics have given way to quieter moments together.

As the busy wife of a Sacramento lobbyist and the mother of a 15-year-old daughter, she makes the 500-mile trip from her Sacramento home to see her dad as often as possible. As a visitor--not his caretaker--she has become increasingly aware of her father's reactions to her arrivals and departures.

Years ago, she began to "sort of slide" into a room, becoming "part of the furniture," so her sudden presence wasn't jarring. She'd unobtrusively join her father by the pool or pick up an art book he particularly liked and "carry on what he was doing." The fundamental idea was to "not make a big deal" about her arrival.

Just as important, she's conscious about leaving.

"Usually when I leave, I say, 'Goodbye, Dad. I love you. I'm leaving. Is that OK?' And he says, 'No.' It's very hard. Sometimes I just wait until he gets up to go to bed and gets interested in something else and I slip out."

One of her biggest emotional challenges came after she was bedridden throughout 1997 because of a bad reaction to interferon treatment for melanoma, a potentially deadly skin cancer, and couldn't leave home.

When she first visited her father after the absence, she found him pacing between two doors to the den, agitated because people he didn't recognize were in the room.

Those people included her.

"He kept asking, 'Who are those people?' " she recalled. Finally, she came up with a strategy: "I picked up a book he liked and he was OK. The next time, I went prepared to leave" if he became upset at her presence, but fortunately, he acclimated.

Today, when she visits with her husband, Dennis Revell, and their daughter, Rita, "there are times he knows who I am. I can tell when he's engaged with us and when he's not. When he's not, there's no purpose in pursuing it."

Rita, adopted six years ago, has only known her granddad with Alzheimer's. "She understands perfectly," Maureen says. "I also teach her it isn't about you, it's about him."

The whole family has had to adapt to his changing capabilities.

In the early stages of the disease, Maureen tried to make conversation easier for her father by sketching in background details.

Instead of asking, "Oh, Dad, do you remember. . . ?" she'd say: "Dad, you probably don't remember this but. . . ." and offer a synopsis.

As her father's powers of conversation waned, it became important that no one talk about him in the third person when he was present.

Reagan recalled that when Dr. John Hutton, a family friend and former White House physician, would stop by, her father "was absolutely engrossed in our conversation. I felt like we were entertaining him. We didn't talk to him as if he was not there."

That's important because with Alzheimer's patients, "you never know at any moment what they're retaining," she says. But sometimes when they're upset or anxious, it's best to "just back off. The moment will pass."

Reagan says her father's Alzheimer's makes her fighting mad. As a board member of the Alzheimer's Assn., she travels the country speaking out for more research dollars and early intervention.

"One of the things that keeps me going is I'm angry. This is how people must feel when they're at war. Most of us who are dealing with this disease today know we will lose our battle," she says. But if the fight leads to progress, patients "will not have left us in vain."

As her father's illness has progressed, she's learned to find joy in the small things: "I consider it a very good day when I get several smiles and laughter. Then I know it's been a wonderful day. There's nothing nicer than the sound of his laughter."

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