By Theresa Driscoll and Elenore Parker
October 14, 2013
|The Courtney family of Worcester were helped by|
respite care for Lily, far left, who has Rett syndrome.
Shown: Lily, Leslie, Ginger, Pat and Brady, the dog.
Leslie and Pat Courtney were typically busy parents of six-year-old Ginger and 18-month-old Lily when they noticed that Lily was losing some of the words she knew. Over the course of a few days, Lily lost the ability to sit up or stand, and was having trouble swallowing.
The Worcester family spent the next two months at Boston Children’s Hospital searching for answers to Lily’s sudden and startling decline. Lily could no longer eat or drink and needed a feeding tube for nourishment.
Doctors finally diagnosed Lily with Rett Syndrome, a rare genetic disorder that affects brain development, occurring almost exclusively in girls. Although Rett Syndrome is rare, the statistics still frighten, with the syndrome occurring once in every 10,000 births. In Massachusetts alone, there are approximately 500 children with Rett’s.
Over the next two years Lily’s abilities continued to decline. She hardly slept, butted her head, and screamed continually.
When Lily was three, Leslie realized that she and her husband couldn’t keep up this round-the-clock care on their own. When she applied for services through the Massachusetts Department of Developmental Services, she discovered the Central Mass. Respite Project and realized that respite — or short-term, temporary relief provided to family caregivers — could give her family support that would help them regain some much-needed balance in their lives.
Without respite, Leslie would have had a “complete melt-down,” she says.
“Respite allows the family to be a family,” she says. “Getting a mental and physical break is vital to continue caring for my daughter in my home. It also gives me the opportunity to do things with my 15-year-old daughter, Ginger, who is very physically active. It gives me the chance to actually spend time with my husband – and friends, occasionally.”
In the U.S., family caregivers like Leslie provide most of the long-term care and support. Giving family caregivers a break – or respite – when they need it makes sense, and not only at a compassionate level. Family caregiving is a significant part of the U.S. economy, with an estimated economic value of about $450 billion in 2009. When family caregivers get burned out and can no longer provide care at home, the cost of care is usually passed along to Medicaid.
The concept and practice of using respite services has gained further acceptance in recent years, as studies have documented the need for respite and the outcomes it improves.
According to the American Psychological Association, family caregivers experience significant negative emotional and physical health effects, and higher mortality rates than non-caregivers.
The Journal of Community Nursing has documented how respite can help alleviate stress associated with poor health outcomes: After one year, 64 percent of caregivers of the elderly receiving four hours of respite per week reported improved physical health, 78 percent improved their emotional health, and 50 percent cited improvement in the care recipient. Forty percent said they were less likely to institutionalize the care recipient because of respite.
‘If you are not taking care of yourself, how can you care for someone else?’
A Massachusetts social services program designed to provide family-centered respite care for children with complex medical needs reported striking findings. For families participating for more than one year, the number of hospitalizations decreased by 75 percent and physician visits decreased by 64 percent.
Many families have stories similar to Leslie’s; many of these will be shared at this week’s national conference here in Boston.
The Central Mass. Respite Project, which matches college students majoring in human services to families needing respite, sent the family their first respite workers. Leslie and Pat spent a lot of time teaching the students about Rett’s, and in exchange, the students provided free respite care.
Since Leslie first discovered respite care, she has been able to piece together a strong support network, which allows the family to continue to care for their daughter at home. In addition to word-of-mouth referrals, Leslie has used a variety of ways to find respite, including the Family Support Network and the Massachusetts Lifespan Respite Coalition website, where she found our Brookline-based non-profit, Rewarding Work.
Rewarding Work has recently been enlisted to create a statewide Respite Directory – specifically designed to help families like Leslie’s find respite caregivers more easily. The more extensive directory, which is expected to be up and running by next spring, will explicitly recruit direct care workers who can meet the needs of families requiring respite. However, if you’re a family caregiver who needs respite help now, you should continue to use the state’s current Personal Care Attendant directory.
Leslie says the search for respite care is ongoing, but worth the effort. “Even when you have a good pool of respite workers, they are sometimes transient (college students, for example), and having a back-up plan is crucial,” she said.
She advises family caregivers to seek out respite support. “If you are not taking care of yourself, how can you care for someone else?”
Lily is now 10. She has regained some lost skills, Leslie says, and is happy. She can eat, communicate with her eyes, stands and sleeps. Leslie attributes much of Lily’s progress and the overall wellness of their family to Lily’s respite caregivers, who in providing care for Lily give the family a much-needed break.
Theresa Driscoll and Elenore Parker are with Rewarding Work Resources, a Brookline, MA non-profit whose mission is to help people with disabilities, elders and their families find the support they need to remain living at home or in the communities of their choice.