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.
Society, including governments, need to plan, too. Expanded lifespans, a growing population and budget-crushed economies make it hard to meet all the needs for assistance, Finkelstein said. Out-of-home placement is not easy to find, waiting lists long. Still, she said, the solution that's chosen may be less important than coming to it before there's a crisis.
Mary Noble did that. The retired school teacher from Idaho Falls, Idaho, moved her daughter Patti, now 46, into assisted living a decade ago because her health and medication management had become too complicated to handle at home.
Noble was pregnant with twins when she contracted rubella. Patti, the smaller twin, suffered the effects while her sister, Becky, didn't. Patti is legally blind, has dwarfism and a disease that affects joints and muscles. She has had four joint replacements — three for her hips and one knee — and uses a wheelchair. She was born with one kidney, which has created other complications.
Her parents, who are divorced, share guardianship and have provided for her in their wills. Twin Becky looks after her, too, Noble said. One day, the responsibility will be hers.
Different conditions and paths
Osteogenesis imperfecta — a collagen disorder whose primary feature is brittle bones — brings no mental impairment, so those who have it experience a very different trajectory than, say, someone with a developmental disability. Most with OI will attend college and have careers and raise families, said Mary Beth Huber, director of program services for the Osteogenesis Imperfecta Foundation, based in Gaithersburg, Md.
Still, some will require care their entire lives. Planning and preparation matter.
"There is much more training for independence than in the past," she said — a truth that crosses medical conditions. Even language reflects it. What were called "pediatric conditions" in part because one sometimes did not get to grow up are now called "pediatric onset," meaning it started, but does not end in childhood.
A rehabilitation expert at the Virginia Commonwealth University Medical Center in Richmond, Va., Jeffrey S. Kreutzer, professor of neurosurgery and psychiatry, helps whole families cope with the aftermath of such brain insults as traumatic brain injury, Parkinson's, tumors and prefrontal dementia, among others. His team looks at emotional, cognitive and physical well-being of the affected person and those who support him.
"One of the core concepts of care is to understand where people are in the life cycle," Kreutzer said. Regardless of the condition, families need education to understand its characteristics and available resources, along with emotional or psychological support and skill building. That three-part approach to managing chronic illness or severe disability helps families hold it together and move forward, he said.
Kreutzer has noticed a progression with caregiving that's fairly typical. He talks of a 40-year-old who was assaulted; the resulting bleeding in his brain left him dependent on others. For a time, he lived with his parents. After they died, he moved to another state to live with his sister. "That's one rule of thumb," Kreutzer said. "Immediate family members tend to take care of the person. A person can get 'passed down' to family members."
Because she has no siblings, 7-year-old Sarah Jane's prospects could be more limited, Donohue said. It bothers him that systems of outside-of-family help focus so heavily on long-term care designed for the elderly. If something happened to him, his daughter would not belong in nursing homes designed for geriatric cases, any more than a young soldier wounded in war belongs with octogenarians, he said.
Whatever happens to Julie Kvam, it will not be her first transition. When she was young, she went to a specialized school and lived for several years in a small group home, her family near. They lived in Washington then, where her dad was a railroad station agent, her mom the postmaster. They moved to Arizona when they retired and it was there that Pat Kvam suffered a stroke and Russell Kvam cared for her, too. Pat never recovered from the stroke. Eventually, they moved to Utah to be near one of their sons and, finally, Pat moved into full-time care.
They always encouraged Julie's interests and talents, something that matters in spite of disability. Huber said as children age, it's crucial to nurture their spirits and help them grow up as much as possible, to take risks that are appropriate, to live full lives. She likes a book, "Reflections of a Different Journey," a series of interviews with adults with disabilities. The authors asked what the subjects wish their parents had known. "Time after time, they said that 'when my parent encouraged me to be my best, to follow my dream, even though it was hard for both of us, those are the things I'm most grateful for,'" Huber said.
It comes down, she said, to accepting some risk. Allowing a baby with brittle bones to roll over is both risky and emotionally hard. But it's an important milestone. The challenges just get bigger. "What do you do when a child does not want an aide in school any more, when the child is ready to drive. ... Every stage requires assessing risk," she said.
The Kvams taught Julie to swim and bowl. She's pedaled "probably 40,000 miles." He takes her with him to the store, where she lights up and strangers smile at her infectious demeanor. "She's a happy girl," he said, who likes to hide his stuff and giggles and talks to herself. Her "pacifier" is a pair of sticks from pompoms now long gone. They are always nearby, a soother.
Such details are part of care's transition. Finkelstein said families sometimes make know-me books that outline not only medications and mannerisms, but words that will calm when the child is upset or what television shows or treats bring pleasure. It's knowledge only a caregiver can share. And it, like the person being cared for, can be passed on with love.