Canada is having some second thoughts. A couple of weeks ago, leaders announced that they will not allow people suffering from mental illness alone to seek medically assisted death.
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Sean Fraser, the country’s minister of justice, told reporters that “while there is not a perfect consensus on this issue, we believe this is the correct approach.” This seems to be the first sign of curtailed enthusiasm for assisted suicide among our northern neighbors, where one out of every 20 deaths is now the result of this policy. Once we allow others (especially the government) to decide which human lives are worth living and which ones are not, we are headed down a dangerous road.
Though author Robert Kolker does not tackle this theme explicitly, his new book, “The Vanishing Family,” will make anyone wonder when life is no longer worth living. The book is a moving account of a Pennsylvania family in which a genetic mutation gives members a 50-50 chance of early onset dementia. It offers some astonishing glimpses of compassion and a view of human dignity in its fullest sense.
The book profiles nine siblings as they realize they are all at risk for the same disease (frontotemporal dementia) that struck their mother Jean. Over the course of a decade or so, Jean went from being a fun-loving, sociable mother, keeping track of a large Catholic family, to a hoarding alcoholic who barely left the house and didn’t shower. Her husband drifted away, leaving her youngest daughter at home with a woman who didn’t cook or clean or pay bills or have the car fixed when it broke down.
It was only once the siblings started to develop similar symptoms that they became suspicious about what was going on. Signs of the disease start to develop around the age of 40. They begin with confusion and strange new habits, but over time, people suffering revert to an almost childlike state. They lose all social inhibitions, say rude things, stop practicing personal hygiene, and become incapable of speaking or even recognizing their friends and family.
As Kolker writes about one of the siblings, Christy: By her 40s, she was “developing new habits and new behaviors. She seemed unable to do things she used to. To the people around her … (she) seemed to have very little in common with the (person) they once knew.” He writes that “like all people who suffer from dementia,” people with FTD “remain alive and, in their new way, conscious. Even at the advanced stages when Christy started to lose the ability to speak, she had a mind with desires and appetites, fears and joys. They just weren’t what they once were.”
When this happens, when the people you have known since childhood become different, what do you do? How do you care for a person who seems like a stranger?
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The hero of “The Vanishing Family” is Sue. The third child in the family, one who suffered hearing loss as a child as a result of a bout with the measles, Sue was not the most ambitious or accomplished of the siblings. She spent her early working life as a probation officer for juveniles. But when Christy became sick, Sue was the one who stepped up.
She would not allow Christy to be tended to by professionals or placed into a home, and for decades, became her caregiver. “The others in the family were grateful to Sue,” Kolker writes. “For them, life went on.” They got married, had children, moved around the country, pursued fulfilling careers. Sue tells Kolker, “People would call me and say, ‘How’s she doing?’ And there really would be nothing to report. … We were here. We were together.”
Christy aged backward. She became like an unruly teenager, then like a toddler who could not be left unattended, then like a baby who had to be changed multiple times a day. Sue did it all. If Sue wondered about the quality of Christy’s life, she did not say.
Interestingly, even knowing what their future would look like, the siblings who found out they had the genetic mutation did not choose suicide or even leave instructions about ending their lives. There are a few stray comments, but nothing serious. Kolker finds this notable. Why not?
The siblings don’t seem to have any strong religious views. Their upbringing, for a variety of reasons, made few of them want to recreate it for their own families. Maybe instead, they saw the love of one of their sisters for another one and they understood something else — that even living with this terrible disease is still worthwhile.
As Sue says about her sister, “You realize even though the Christy that we grew up with and knew is leaving and gone, there’s still a human being in there to take care of.”
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