Send this story Print this story

Adjust text size

'A curious kind of widow'
Wife charts the ravages of her husband's Alzheimer's disease

by Diana Reynolds Roome

Watching the personality and intelligence of her husband fade away over 12 long years under the relentless assault of Alzheimer's disease, Ann Davidson kept meticulous notes about what was happening to both of them.

Published this year — the 100th anniversary of Dr. Alzheimer's labeling of the syndrome — "A Curious Kind of Widow: Loving a Man with Advanced Alzheimer's" is the second book to come out of the Davidsons' long and painful struggle.

Her first book, "Alzheimer's, a Love Story," tells of the diagnosis at only 59 and the slow decline of Dr. Julian Davidson, a Stanford professor of physiology who, ironically, specialized in the neurobiology of the brain. He had been physically strong, and would jog daily and cycle to work on campus until he started losing his way.

"This was the most shattering thing that had ever happened to Julian and me. ... It blew our lives apart," said Davidson, who has volunteered as a family consultant for the Alzheimer's Association in Mountain View for the past four years. "It's a very dark, grim story."

Yet she has portrayed a vibrant sense of their life together — including struggles with her own exhaustion, impatience and despair — that makes the book constantly engaging in spite of the sadness. The book's unflinching honesty gives readers the raw details of mental decline without sentiment or cynicism, and sometimes even with humor.

For several years Julian was agonizingly conscious of what was happening to him. Even during the advanced stages of the illness, his words were often gibberish but his sentences had a poignant internal sense to them, as if he knew perfectly well what he was saying but was inadvertently speaking a language nobody else could understand. Sometimes the words even sound like poetry, of the Lewis Carroll, "Jabberwocky" variety.

"Oh it's terrible! The gavin and the gibbins. Did you go to see the aberiz?" he exclaims one morning at 3 a.m. Unable to remember how to remove his pajamas to go to the toilet or even how to lay his head on the pillow, his distress is awful, but his humanity and dignity come through despite the confusion, humiliation and absurdity.

While taking care of her husband, Davidson is also dealing with other family dramas, such as her 84-year-old father's life-threatening diabetes and an unexpected crisis that leads to her daughter's family of five moving in with her just as Julian's deterioration seems to be reaching a point of no return.

"Terrible and wonderful things happened," said Davidson, whose first book came out of journals written "to relieve the pressure." There were moments of lucidity and reconnection with Julian. For example, one day out of the blue, he said, "I used to be intelligent. Now I'm just a free and simple man," and once, after keeping her up most of the night because he couldn't figure out how to lie down, he said, "I'm so sorry. I'm a good person ... and you're my big chief."

At other times, he looks at the newspaper upside down, and the effort of choosing matching socks reduces him to tears.

"Everything that is essential, he lost. But I was so deeply moved by Julian's personality, which was there — even though so damaged, bizarre and far from the mainstream — and I just couldn't turn away from that."

Davidson learns to catch and cherish the increasingly fleeting positive moments, never letting herself forget that Julian still experiences his life — drastically simplified and reduced, but still meaningful to them both. What she never does is abandon the essential Julian she believes is still there somewhere.

"A Curious Kind of Widow" ultimately focuses on the decision to place her husband in residential care after six years of caring for him herself, which was, for Davidson, "like a little death." This painful event, which can feel like a betrayal, resonates with anyone who has had to consign a loved one to residential care for any reason.

"Caring for someone with advanced Alzheimer's is overwhelming, backbreaking, emotionally draining and eventually impossible," said Davidson, who hopes that the book will encourage readers to talk to people who are going through this experience — both the caregiver and the patient.

"The patient can feel incredibly isolated and removed from life; they know they can't participate but they still need friendship, someone to indicate that they're happy to see them."

The caregiver, too, especially when part of the patient's family, is desperate for companionship and acknowledgment of what they're going through — a kind of compassion that Davidson calls "the freeing space of acceptance."

"Many are sympathetic but they don't know how to express it," said Davidson, who advises, "Don't avoid the word [Alzheimer's] and live with an elephant in the room."

When people offer a kind word and even practical help, it can make a big difference.

At one point in the book, Davidson phones the Green Library at Stanford, where her husband had a study for many years, and somebody there asks after him in a way that seems especially caring. "No matter how awkward the moment," she writes, "when problems are acknowledged instead of ignored, comfort comes."

As a volunteer for the Alzheimer's Association, Davidson often talks to people who have just received a diagnosis.

"They are stunned and don't have a clue what to do next," she said. "But people need to know they don't have to go through it alone. We have great resources in this area — we're very lucky."

The Alzheimer's Association, for example, runs early stage support groups for people with a recent diagnosis, as well as information and support groups for family members and even an online shop. Available help runs the gamut from advice on legal, financial and other practical issues, to painting classes for Alzheimer's patients.

Davidson's portrait of the final stage of a long and vital marriage amounts to a courageous act of sharing. In "A Curious Kind of Widow," she offers hope of salvaging life and love from the tides of forgetting.

INFORMATION:

"A Curious Kind of Widow: Loving a Man with Advanced Alzheimer's" by Ann Davidson, 2006, (Fithian Press)

Where to go for help

The Alzheimer's Association, in Mountain View, runs frequent workshops, ongoing support groups, and informational events throughout northern California. Call (800) 272-3900 for details or visit www.alznorcal.org.

Among the workshops:

* Maximizing your Memory, an interactive workshop with tips and strategies for improving memory, including ways to tell the difference between normal memory loss and dementia.

* Maintain Your Brain offers the latest scientific research about simple changes for a brain-healthy lifestyle.

* Alzheimer's: Beginning to Cope addresses challenges confronting families, and includes information on research, diagnosis, treatments and community resources.

Discussion groups:

* Inner Resource Center is an eight-week class in Los Altos for caregivers and family members.

* Memories in the Making, art therapy for Alzheimer's patients, is held at day and residential centers such as Rosener House, in Menlo Park, and Palo Alto Commons and Avenidas, in Palo Alto.

Other resources:

* The Veteran's Administration, Palo Alto, (650) 858-3915

* For in-home care, try Home Instead, Mountain View, (650) 691-9671, www.homeinstead.com