Editor’s Note: We would like to personal thank reporter Kaitlyn Roby who made it possible for us to not only reprint this article but to also use the photos she took.
Keeping the family together…
Since her daughter Vera Wilson was diagnosed with cerebral palsy at 15 months old, Jeanne Keenan has had to fight to keep her only child at home.
Vera, 50, can’t speak, though she communicates in ways those close to her understand. She can crawl, but is usually dependent on a wheelchair and other people to get around. As the West St. Paul mother explains, Vera’s skills are comparable to those of a 1-year-old, and she needs round-the-clock assistance.
After her husband died in 1971, Keenan took care of Vera, essentially alone, day in and day out, until she remarried in 1976.
Vera routinely got sick with various infections, including serious kidney infections, and doctors told Keenan again and again to place her child in a group home. But she refused.
For Keenan, it’s not a matter of heroics or rebellion; she and her husband Dennis just felt a family should live together.
“We’re no one special,” Keenan says. “We just believe in keeping her at home as long as she can be home.”
Looking for a new home…
As difficult as it is to relinquish 50 years of constant care and attention, Jeanne Keenan, at 77, is experiencing chronic health issues. Dennis, 75, does most of Vera’s lifting and placement, which is getting harder even with Vera’s tiny frame.
“It’s like having a baby that never grows up,” Dennis says. “We’ve got a baby that weighs 85 pounds. …
“We just feel like we’re starting to get worn out.”
As Vera approaches her 51st birthday, they’re preparing for her to move into a group home in St. Paul Feb. 1. They spent more than a year vetting numerous group homes to make sure her new setting is exactly what Vera and they want.
Dennis says they’d rather make the decision now, instead of being forced to settle for a less-than-ideal situation in an emergency.
“We’d rather take action now and try to find a place where she can be happy and we can still be in her life, but we don’t have to do the heavy lifting taking care of her,” Dennis says. “We feel confident that there’s a place for her to be.”
And, fortunately, Vera’s new home is just eight miles away.
Support is essential…
The Keenans have received significant support over the years — help from a caseworker, an aide who gets Vera ready for the day, and regular respites, where Vera actually stays in a group-home setting for a few days.
Deb Peterson, a non-residential program coordinator with Dungarvin, has spent an afternoon with Vera each week for around five years.
Their weekly ritual usually starts at Baker’s Square in West St. Paul. Vera selects food off the menu: Peterson shows Vera a picture book with options, and whichever image she gets the most excited about is what gets ordered.
After they eat (Vera needs some help cutting her french toast and using silverware), Peterson takes out the pictures again. “Should we go to the park? Wal-Mart? The library?” And Vera lets Peterson known through vocal sounds and body language what they do next.
Vera responds best to being out and about, around people, Peterson says. One of her favorite activities last summer was “Music in Mears” in St. Paul, where bands played and crowds gathered in the downtown park.
Though Vera’s next step is a group home, organizations like Dungarvin statewide are moving the other direction — to more non-residential services, allowing “persons served” to live more independently, according to Missy Loveday, an operational manager at Dungarvin.
But for Vera, true independence isn’t an option.
And care-giving can take its toll on a family, Loveday adds.
“It’s hard on the family, emotionally and physically,” she says. “It’s a lot of work. You’ve got those rare families that are just dedicated.”
Vera has been surrounded by family and staff who are wholly committed to her. Peterson has actually turned down promotions in order to keep doing what she’s doing — direct care.
“I like helping people; I like making a difference,” she says. “You actually kind of become like part of the family in some families.”
Loveday says it’s rare to have someone as committed as Peterson in the direct-care field.
“We cherish people like Deb,” Loveday says.
Vera has been going to Midwest Special Services on St. Paul’s East Side, or “work” as the parents commonly refer to it, for nearly 30 years. Some of the staff Vera encounters have been there about as long.
There, she socializes and works on her skills through crafts, games and music.
The location actually sees a lot of longevity, according to Lisa Hartman, a Midwest designated coordinator, in those who stay at Midwest and in the families who keep their adult children at home.
According to program supervisor Michelle Zaiger, there are about 100 people served from age 21 to 80. And, with improved medical care, their clients have longevity no one would have anticipated years ago. One woman at Midwest made it to her mid-90s.
Hartman and Zaiger have gotten to know Vera well.
“Vera’s a really sweet, calm young lady with a lot of potential,” she says. “The thing I like about her is when she sits and smiles at you, she makes you feel good and makes the room feel good. She’s a calm presence. She’s very cool.”
Zaiger says she sees both Vera’s affection for her parents and her desire to remain independent while she’s at Midwest.
“She has such a passion for her parents,” Zaiger says.
However, she adds, “She also can tell you with her eyes that when they come to visit here, she doesn’t want them here. This is her space.”
Protecting their child…
Zaiger says the transition from home to group home is often difficult for families, especially for parents from the Keenans’ generation who fought an uphill battle to care for their children on their own.
The prevailing wisdom when Vera was born was to place severely disabled children in institutions, and those who bucked the system had to develop an extraordinary resolve to hold to their decision. Criticism might come not only from physicians but educators, neighbors and even friends and family members.
“What you find, is (the parents) are very, very protective, which is why they’re in their 70s and still taking care of their children.”
Zaiger predicts, though, that Vera will adapt well to the change. She says Vera’s already been through a lot, and her upbeat disposition has helped greatly.
“Vera’s got another challenge to face in her life, and she’s going to do just fine.”
The Keenans had strict requirements for Vera’s new home: it had to feel like a home, and have transportation to Midwest, residents similar to Vera and staff that truly cares.
The parents know Vera would enjoy being in a house full of people, but they are undoubtedly and unceasingly protective of Vera. Still, they know there’s no getting around the fact a time is coming when they can’t take care of Vera.
“We want to have a say in where she’s going to be,” Dennis says. “Our main goal is to keep her happy and healthy.”
Jeanne adds, “It is definitely time she find a home before something happens to both of us.”
When Vera moves out next month, Jeanne says it will leave a “great sadness.”
After 50 years with Vera sleeping in the next room almost every night, Jeanne will soon have to travel to see her.
“It’s going to be hard for me,” she says. “Things have been happening fast — too fast, really.”
Reprinted with Permission from South-West Review. Original article can be found here.
About Kaitlyn Roby
The Statistics in the USA on Caring for Someone…
Jeanne and Dennis Keenan are far from alone in having to decide whether they can continue to care for an adult disabled child as they age.
The National Alliance of Caregiving’s 2009 report marks the first time it asked specifically about people caring for adults; it’s currently conducting research for its 2015 report. Of the estimated 11 million people in the U.S. providing care for a child or other dependent over age 18, the Alliance found:
- 35 percent are male and 65 are female
- 59 percent are married
- 35 percent are caregiving alone, whether they’re never-married, divorced or widowed
- 38 percent are age 50-64
- 10 percent are age 65-74
- 4 percent are age 75 or older.
The majority of adult children being cared for are reported to have mainly long-term physical disabilities — 71 percent of the time — with sometimes overlapping mental health or mental disability issues. Developmental delay or learning disability was cited for 13 percent of the adults being cared for and mental health or behavioral issues for another 41 percent.
Although the Alliance found those caring for a disabled child under 18 reported more hours of care, more stress and more physical problems than those caring for adults, more than half of those caring for adults reported suffering physical strain. Of caregivers for adults, 16 percent say they themselves are in fair to poor health, with 16 percent also saying the care-giving has worsened their health.
People who care for adults also report the care-giving is a financial hardship at a rate of 46 percent. And, according to research compiled at caregiver.org, family members are still the primary caregivers for adults with developmental disabilities. About three out of four adults with developmental disabilities live at home, and one of those four is being cared for by someone over age 60. The average age of the adult receiving care is 38.
The question of how to provide for adults whose parents have cared for them for decades will loom larger as the baby boomers age. As one study summary points out, “One age-related concern is providing support to the family caregivers who themselves are experiencing diminished capacity.”
Reprinted with Permission from South-West Review. Original article can be found here.