Jeffrey D. Allred, Deseret News
MIDVALE — Julie Kvam does a stiff-legged little hop down the staircase, skipping the last two carpeted steps. She lands upright with a curtsy and a slight nod of her curly blonde head. Then she grins as if she'd just aced an Olympic hurdling event.
"Ta-da!" the 51-year-old proclaims loudly before walking to the dining room table to ruffle her dad's hair.
Russell Kvam is the most important person in her life these days. He cooks for her, takes her places, speaks for her, keeps her safe and loves her whole-heartedly. But he is also 83 years old and he knows he won't always be able to care for her. Both are healthy, but she is aging at an accelerated pace, common for someone with Down syndrome. And he is, he admits, growing old as a natural course of events.
Caring for her is very different than it was when she was a baby whom he or his wife Pat could pick up. Pat died a few years ago. He has swapped youth and vigor for experience. While time has increased Julie's size and some of her physical abilities, she will never grow up in a traditional sense. Nor will she ever be able to live independently. While he's done his best to line things up, eventually her care will pass to others; he's confident her two older brothers will see that her needs are well met.
Family provides the bulk of care for individuals with severe disabling conditions who cannot take care of themselves. Sometimes, the sheer work of physical care changes as small bodies become adult-sized. Time doesn't stand still for their caregivers, either, who may find a task that was doable at 40 quite daunting at 70.
New Yorker Patrick Donohue thinks about that a lot as he carries his daughter Sarah Jane, now 7, with him. She suffered a traumatic brain injury at the hands of a nurse when she was five days old and has never walked or talked or fed herself, though he hopes someday she will. He is 41 and throws all of his energy into a foundation that bears her name to help drive policy and research he hopes will let her one day be independent. In the meantime, he worries that because she's an only child who should live a normal lifespan, he will likely not always be her main source of support. No one waits as backup in the wings.
Who will take over care and what it will look like is never far from the thoughts of aging caregivers, a population nearly impossible to quantify, though there are hints. For example, 400,000 Americans live with Down syndrome, their disabilities a spectrum from mildly impaired to dependent. Brain injuries also cross a spectrum, but each year, 750,000 Americans suffer one severe enough to require emergency care. Hundreds of thousands of Americans live with severe developmental disabilities and physical injuries and diseases that mean they will likely always require care.
As health care and education options improve and those who are frail live longer and more fulfilling lives, even more parents must plan care for when they can no longer provide it. With Down syndrome, for instance, the life expectancy was 25 in 1983; some now live into their 70s, said Beth Finkelstein, executive vice president of the New York-based National Down Syndrome Society.
"It's really important for families to plan ahead for aging and for the transition," Finkelstein said.
The plan itself hinges not only on the individual's disability, but the family's resources, whether other relatives will step up and much more. Details combine to determine if someone needs a group home, in-home assistance or nursing home care and whether resources exist to make it possible. It all involves adjustment and perhaps a physical move.
"It needs a purposeful trajectory," said Finkelstein, who noted that love and companionship flow both ways and such an intertwining of lives must be handled with care.
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