‘Unbearable’ burden for parents
AS Tania Clarence is charged with the deaths of her three children, I spoke to two families about the difficulties of caring for a disabled child.
How do you describe life as a parent of a child with profound or life-limiting disabilities? “Inhumane. Insane. Pushed to the wire.” Henrietta Spink veers from the language of despair to that of hope. “It has been an extraordinary journey,” she says, with some positivity, of the past 26 years spent raising her two sons, both of whom need round-the-clock care. And then: “Our life has been destroyed.”
Henrietta, 52, and her husband Michael, 57, an expert in Islamic art, understand better than most the Clarence tragedy.
“There have been times,” says Henrietta, “when I have wished all four of us were dead. It is remorseless, unrelenting, a situation for which there is no manual, an emotional black hole.”
Henrietta has cared for her sons Henry, 26, and Freddie, 22, since they were born. Henry is severely epileptic, cannot walk or talk, and is incontinent. He exists in a sort of stasis: an adult body suspended in the world of a three-month-old baby.
Freddie is autistic, hyperactive and, although 108kg and 1.75m tall, behaves like a three-year-old. Born with a diaphragmatic hernia — his stomach organs were in his chest at birth — he was placed on life support, where he suffered a stroke, which went undetected for 15 years.
Henrietta and Michael are wiped out with exhaustion. “Every night, one of the boys will need help at some point. Freddie wakes properly at about 4am or 5am, and from then on one of us is up monitoring him. Then I do six lots of washing because Henry is incontinent and I spend two hours a day cooking to ensure they have proper nutrition.”
Managing both boys is utterly time-consuming, meaning it is impossible for either of them to hold down full-time employment, which adds to the financial worries.
Henrietta’s friend Anne Jones (not her real name), who lives in west London, understands. Her son Robert, 26, was born with a rare defect where the band of white matter connecting the two hemispheres in the brain fails to develop normally.
“Robert doesn’t speak — just the odd word, although he understands us well,” Anne says. “But he has no concept of danger, so he must be watched 24 hours a day.”
Anne’s husband Jeremy, an architect, is still working at 70. The Spinks were forced to sell their Battersea home due to debts. “The financial strain is overwhelming, but Michael can’t afford to fall apart,” Henrietta says. “The longing to have time for one another, for sleep, is devastating. The loneliness of our situation is unbearable at times.”—