Explore Respite Care Options for Special Needs Families
Get a helping hand when you need it the most.
In 2007, Bill and Victoria Strong of Santa Barbara, California, welcomed their infant daughter, Gwendolyn, with the typical hope and expectations of first-time parents. Just a few weeks later, though, Gwendolyn began to exhibit symptoms of a severe neuromuscular disease: weak muscle tone, a "floppiness" that prevented her from holding up her head and struggles with breathing and drinking milk. She was diagnosed with Spinal Muscular Atrophy Type 1, or SMA, an often fatal genetic disease that robs children of their motor neurons.
By the time Gwendolyn was stable and the Strongs were ready to bring her home -- along with several pieces of life support equipment -- they were demoralized and fatigued. Fortunately, a social worker introduced the family to something called respite care.
What is Respite Care?
Respite care is short-term care that allows family members and caregivers of children and adults with disabilities or chronic conditions to carve out time for themselves, whether it involves an overdue trip to a hair salon, a much-needed date night for a couple or the opportunity to sit in a quiet room and simply rest.
These family members are often understandably reluctant to leave their loved ones, especially children, in the hands of strangers, even for a few hours. But respite care professionals are trained to handle an array of medical and emotional needs and provide a safe harbor for families.
When Gwendolyn came home, "we were exhausted," Victoria remembers. "I was literally afraid to leave the room or to go to the bathroom." Luckily they were able to find a night nurse to help. She arrived at 11 p.m. the first night Gwendolyn came home, and she stayed in the nursery watching the baby's vitals. Gradually respite nurses were integrated into the family, providing care at night and sometimes during the day.
What Respite Options Are Available?
Like the Strongs, you can hire someone to come at night so you can rest or find someone to give you a hand during the day. You can work with a respite care center or hire a special needs caregiver who can come to your home. You may need help for an hour or you may need a longer break.
To find out more about your options, check out Care.com's Special Needs Respite Care Guide ť
Why Do You Need Respite Care?
Respite Care of San Antonio (RCSA) has been providing respite to families with developmentally disabled children for over twenty-five years. What do all of these families have in common? "They all need a break," says Bert Pfiester, RCSA's president and CEO. "And it's okay to say, 'I need time off, peace and quiet."
"Most families don't realize the importance of respite care when they are dealing with a stressful caregiving situation," remarks Donna Levin, co-founder and vice president of service delivery and operations at Care.com. "A short-break can make a world of difference for the caregiver and the care recipient."
Jill Kagan, MPH, program director for ARCH National Respite Network and Resource Center and chair of the organization's National Respite Coalition, agrees. "Most family members feel compelled to provide care at home to a loved one out of a strong sense of love and personal responsibility," she says. "They want to be able to keep their child at home, which is often the safest and happiest environment, even for medically complex cases. But the continuously high level of stress can take its toll. By providing a break, respite can help bolster a caregiver's physical and emotional health and restore family stability."
It boils down to a simple truth: you can take better care of your child if you're taking care of yourself.
Where Can You Find Respite Care?
The Strongs found their support through both a local respite care program and a hospice service. But where can you find help for your family?
There are options available to match every need and budget, and plenty of organizations to help guide you through the maze. Read about some of these groups in our Guide to Family Caregiver Resources ť
Today Gwendolyn is a vibrant, if fragile, kindergartner, learning quickly and participating in plays and concerts. And respite care played a big part in that growth. Her parents have also started the Gwendolyn Strong Foundation.
"All the services we receive balance our lives and boost Gwendolyn's quality of life," says Victoria. "If we didn't have respite care, our lives would change dramatically. We're a team for Gwendolyn."
The father of a ten-year-old boy with a neuromuscular disorder, Hamilton Cain has written for the New York Times, Men's Health, O Magazine and various online venues. He is also the author of a memoir, "This Boy's Faith." He lives with his family in Brooklyn, New York.