Planning for A SECURE FUTURE
Aging parents face challenges as they arrange for the care of their disabled children after they’re gone
PART FOUR OF FOUR
Editor’s note: This is the final installment in a series of articles on issues facing the mentally disabled. P HILADELPHIA (TNS) — Joann Clark and her daughter, Jessica, have been gingerly navigating the limbo between life and death as they discuss what will happen to Jessica after Joann is gone. Joann, 69, is not dying. But chronic obstructive pulmonary disease keeps her tethered to an oxygen tank 24 hours a day, and she has had three emergency hospitalizations in the past few years. She and Jessica, 35, who has Down syndrome and is also legally blind, know what’s coming, sooner than later.
Jessica says her mom’s first hospitalization was a terrifying wake-up call from the future. “I basically had a meltdown,” says Jessica, an only child, who lives with her mother in Glen Mills. “I was crying and scared and nervous. I already lost my dad” — Jim Clark, who died suddenly in 2009 — “and I didn’t want to lose my mom, too.”
The Clarks’ surviving biological family is tiny, including only a aunt in her late 70s and three cousins busy raising kids in already full houses. Joann and Jessica don’t think it would make sense for Jessica to squeeze in with them after Joann is gone.
So they’ve been mulling other options. ‘We’re both sad’
They have talked about Jessica staying put in their present home, which has three bedrooms, and inviting two girlfriends, who also have Down syndrome, to live with her. Relatives of all three would oversee operations and perhaps arrange for a kind of house mother to stay with the young women overnight, in case of an emergency. Their day activities would then be supervised by their current state-paid caregivers.
Or maybe Jessica would live with a family friend they love very much. The Clarks have had preliminary, hopeful discussions with the friend, but they are taking it slowly. Their conversations are tender and painful, requiring everyone to imagine a world without Joann.
She and Joann are sitting in their cozy kitchen on this chilly weeknight, and Joann reaches across the table and holds her daughter’s hand.
“It breaks my heart when I hear her praying and I hate that Jess has got to live this way, worrying about this every night,” says Joann. “I don’t understand the powers that be and why things would be this way. I guess there’s a reason for everything, but I don’t know what it could be.” Jessica leans her head on her mom’s soft arm. “I guess you could say we’re both sad,” she says. Conversations like these play out every day in the homes of aging parents who know that their days of caring for their intellectually and developmentally disabled adult children are numbered. After decades of fiercely advocating for their children’s every need — from education to employment and housing and caretaking — parents must devise a plan for their children’s well-being after they themselves are no longer here.
Along the way, emotions can range from sadness to relief, worry to optimism, denial to acceptance as parents, children, siblings, and extended family contemplate what life might be like under a new arrangement.
The Clarks’ conversations these days might be difficult, but at least they’re having them. That’s not always the case for parents of children with intellectual and developmental disabilities, says Maureen Cronin.
“They just can’t get themselves to a place of really thinking it through and getting a plan together,” says Cronin, executive director of the Arc of Pennsylvania, the state chapter of The Arc, the national advocacy organization for people with intellectual and developmental disabilities. “Parents can’t imagine a world without their child — but they also can’t imagine how their vulnerable son or daughter will survive without them.”
That’s why, she says, it’s common for many parents to say, “I want to die one day after my disabled child dies.”
“It sounds horrible, but those feelings are absolutely real,” says Cronin, whose own son, who had cerebral palsy, died at age 4. “Since the moment a parent learns a son or daughter is disabled, they’re thinking about what will happen to that child after they’re gone.”