Parenting & Families

Caregiving

Caregivers Warrant Some Special Respect, 11/28/04

The Columbus Dispatch
By Deborah Kendrick

Columbus resident Claudine Valentine remembers the day she first saw Kim. "She was in that little red wheelchair…had the little plaid dress, white bonnet. I saw those big blue eyes, and thought: 'Oh, my. You belong to me.'"

That was in 1986, when Valentine was a nurse in a residential facility for children with mental retardation and other disabilities — the place where Kim lived. The 7-year-old child Valentine fell in love with is now 25 and, as Valentine puts it, "is like part of my own family."

When Valentine visits her daughters in Marysville, Indiana and Kentucky, Kim often goes with her. Kim is an ardent Elvis fan, so the two have vacationed at Graceland and attend performances of Columbus Elvis impersonator Mike Albert.

Kim feeds herself, but needs assistance with all other personal needs. She communicates with Grandma, as she calls Valentine, with a device that "speaks" for her. Now living in a group home and spending days at the United Cerebral Palsy, or UCP, adult day-care program, Kim spends many holidays with Valentine. "I always check with her dad first," Valentine said, "because her family often has plans for her, too, but I just adore her and love having her here with me."

Lynn Fasone’s sister, Melinda, has severe mental retardation and bipolar disorder. Melinda, 41, requires constant supervision and can be "very challenging". Yet, significant challenges or not, Fasone, also a Columbus resident, decided seven years ago that the safest and best living arrangement for her sister would be to live with Lynn and her husband.

With a 20-year career with the Franklin County Board of Mental Retardation and Developmental Disabilities behind her and seven years of being primary caregiver for a person with significant disabilities, Lynn has seen the socialservice system from all angles.

"I have so much wonderful support," she repeats emphatically. "Melinda is now my job, my main priority, but I couldn’t do it without the support of my husband, of UCP, of a wonderful psychiatrist who specializes in this unusual combination of conditions," and many other support services.

Melinda functions at a level equivalent to a 2- or 3-year-old. Mix that with her 200-pound body, and the tantrums induced by her bipolar tendencies, and maybe, possibly, we can get an inkling of what Lynn Fasone means when she says her sister is challenging. "I’m very proud of Melinda," Fasone said, "and feel blessed that I have so much more support than Mom ever had in caring for her."

Valentine and Fasone are two of the women honored last week as outstanding volunteer caregivers by UCP Central Ohio. The award ceremony is one of many such events around the country held in celebration of National Family Caregivers month.

Paid and unpaid, family members around the country are making daily sacrifices to care for a disabled or elderly loved one. The range of care varies as dramatically as do the individuals with disabilities. That sometimes requires what Fasone calls "total care" — bathing, dressing, constant supervising, needing someone to drop by with groceries or assist with household chores. And some, as Kathy Streblo, executive director for UCP Central Ohio puts it, "just need a good listener, a friend."

Whatever the level of care provided, it is with no small amount of awe and admiration that the rest of us can look at what they’re doing. Even those who are paid as personal-care assistants are often earn less than fast-food workers and often work without health-care benefits.

People who hold in their hands the very essence of quality of life for another human being are more than worthy of a month’s proclamation in their honor. They deserve for more of us to see what they are doing — and then do likewise.

Deborah Kendrick is a Cincinnati writer and advocate for people with disabilities.

Reprinted with permission from The Columbus Dispatch.

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