LEWISTON – Those who suffer most from Alzheimer’s disease might not be those who die from it.

The caretakers – the spouses, children and siblings – suffer just as much, according to a pair of speakers Thursday afternoon at the Great Falls Forum.

“Mine is the story of one caregiver’s journey, but there are so many others,” said Buckfield’s Suzanne Johnson, author of a recently published memoir that documents her mother’s illness and her father’s struggle to care for her.

“All that I can do is offer what I witnessed,” she said.

Her book, “Til Death Do Us Part,” was recently published by Just Write Books in Topsham. Culled from her own journal and notes her father kept during her mother’s 15-year bout with Alzheimer’s, she originally wrote it as a gift to her father and family.

Her mother, Beatrice Legendre, was a registered nurse, an athletic healthy woman who raised three daughters. Born on a central Maine farm, she had amassed a life’s worth of memories when she was diagnosed.

“And then, all of these were swept away like dust,” Johnson said. She watched her mother transform from the household bookkeeper to a woman befuddled by numbers, and from an adult to a person with sometime childlike innocence.

The transformation was almost as stark for her father, Raymond. A hard-working man all his life, he was comfortable leaving the role of housekeeper to his wife and daughters – until Beatrice’s sickness.

“He took over all of the responsibility,” she said. He cooked, he cleaned and he kept her impeccably dressed. Eventually, that included bathing his wife as well.

The second speaker was Auburn’s John Mauro, whose wife, Deborah, died Feb. 15 after eight years battling the disease. She was diagnosed at 49 – quite young, he said.

“There is a lot I’ve discovered since I first learned to spell ‘Alzheimer’s’,” he said. He’s spent the last few years as an activist, encouraging efforts to find a cure for what he calls a national epidemic. Current estimates place the number of Alzheimer’s sufferers at 4 million. That’s expected to increase to 16 million by 2050.

“That will bankrupt Medicaid and Medicare,” he said.

The forum is a monthly public platform for thought-provoking speakers and discussion. It is sponsored by the Sun Journal, Lewiston Public Library, St. Mary’s Regional Medical Center and Bates College. This season’s remaining speakers are Mike Brady, professor of adult education at the University of Southern Maine on April 19, and Lewiston High School teacher Joan Macri on May 17.