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"The Vanishing Family" | Reviewed by Chris Stuckenschneider
Doctors attribute the rise in dementia to our aging population, increasing numbers of people now living well into their 80s and 90s. A form of dementia that is unique and can be inherited, Frontotemporal Dementia, FTD, is the subject of Robert Kolker’s new book, “The Vanishing Family: Love, Fate and the Quest to End Dementia.”
In a non-fiction book that reads like a novel, Kolker compassionately relates the story of an unnamed Pennsylvania family. Ollie and Jean have nine children, five of whom fall victim to FTD, a disease they had a 50-50 chance of contracting, one that reduces them to shells of their former selves when they are in their 40-60s. This gene was passed on to them by their mother.
Those afflicted with FTD, gradually lose themselves, act out in unexpected ways totally foreign to them, eventually becoming completely dependent on others, but the symptoms they present with, and which grow worse, are different from those displayed by other types dementia and Alzheimer's.
Life didn’t start out foreboding for Ollie and Jean. They held great promise of achieving the American Dream, Ollie educated at Notre Dame, his wife at the university’s sister school, St. Mary’s. The couple actually met on a train going from St. Louis, where they both were raised, to South Bend.
Ollie and Jean married in 1950 and settled in Webster Groves. The future looked bright for the Catholic couple, Ollie pursuing a career in engineering with dreams of starting his own business, while Jean planned on being a mother devoted to her family.
The 1950s found the couple consumed with babies, Kathy, Christy, Sue, Dutch and Mary, all born within a decade. Their 6th and 7th children, Peggy and Scott, arrived in the 1960s, when the family moved to Canton, Ohio, supposedly for a job change but actually because Ollie had an affair with his secretary when Jean was pregnant with their eighth child.
Ollie’s philandering continued and Jean accepted his behavior because they were Catholic “We don’t get divorced,” she told her oldest daughter Kathy. After only living in Ohio for a year and a half, Ollie and the family moved to Pleasant Hills, Pennsylvania “…for yet another shot at the dream.”
Jean excelled at being a stay-at-home-mom, loving her children and challenging them with activities, being an involved parent, taking part in community, while also maintaining her appearance. She was “put together, never leaving the house without stockings, high heels and a dress.”
The older children in the family called the era in Webster the “Camelot Years” and remembered their mother very “differently than the woman she became.
It was only in hindsight that they saw what was happening—how Jean withdrew, fading into the background of her children’s lives.” Jean became unrecognizable as the mother some of the older offspring remembered.
Barb the youngest child, born when Jean was 47, suffered serious neglect as her mother’s personality changed, Jean drank to excess and exhibited bizarre behavior. Often Barb didn’t have enough to eat—her father more distant than ever, escaping his wife’s increasingly disturbing presence.
Years later it was Barb who spearheaded the drive to discover the cause of a disease that was robbing her siblings of their lives, as one by one they succumbed to FTD. In chapters that focus on the various siblings, readers see them deteriorating, with no initial knowledge that they have FTD.
“The Vanishing Family” is a fascinating, heartbreaking book that lays bare a cruel disease for which there now is a test. Barb waited years to find out if she had inherited FTD, prompting readers to wonder how they would deal with a like situation.
This is an important book that’s at once personal and clinical, another page turner by the author who previously wrote, “Hidden Valley Road.”
