TAKING TIME OUT FOR THE REST OF YOUR LIFE
by Anita M. Caldwell
Movies. Dining out. A weekend in the country. For many people who are caregivers to a family member with a neuromuscular disease, such time away is unthinkable.
But for parents who do manage to take a break from caregiving, the time away -- or respite -- is the best rest of their lives, needed to maintain their own health and that of the family.
"Any time someone gives you a break, it's respite," said Joan Lafferty of Nashua, N.H., whose sons, Joseph, 11, and Peter, 13, have Duchenne muscular dystrophy. "Sometimes we go for a walk with the dog," said Lafferty, a part-time CPA.
Her husband, Tim, is a sales representative who works at home but travels frequently. "To find time for each other, when you don't have to focus on the children's needs, it refreshes you and recharges you," she said.
Medical experts and health care professionals agree: Parents need a break from the extra demands of caregiving for a child with special needs. According to the National Family Caregivers Association, more than 25 million people nationwide are family caregivers. A 1997 NFCA survey showed that caregivers spend more than 20 hours a week on caregiving duties, with most of that time spent on housework, meals, feeding and dressing. Eighty-two percent are female and 74 percent are married. Their greatest problems include frustration, 67 percent, and no consistent help from family members, 76 percent.
Jamie (left) and Chris Carrier use their respite time to go to the movies or for shopping. The couple's son, Cory, has spinal muscular atrophy.
Suzanne Mintz, president and co-founder of the NFCA, compares respite to the gasoline pump at the local service station.
"Respite is the fuel you need to keep on going," said Mintz, who cares for her husband who has multiple sclerosis and uses a wheelchair. "When we see the gas light come on [in the car], we fairly soon afterward stop and get gas. We need to recognize our own little 'gas tank empty' light."
Some indications that you've run out of gas, Mintz suggested, include exhaustion, feeling grumpy, poor decision making and impatience. Other symptoms of stress-related ailments include insomnia, indigestion, trembling, teeth grinding and jaw clenching, sweaty hands, changes in appetite, dizziness, stomachache, headache or back pain.
"The best gift [parents] can give their loved ones is to take care of their health," Mintz said. "We're their lifeline."
Maintaining that lifeline may be as simple as having a neighbor or friend come to the house for an evening. Sometimes an older child can provide respite for a few hours. In situations in which a child with a neuromuscular disease needs help with feeding, using a breathing apparatus, toileting or lifting, various health care agencies offer respite services.
Respite services vary from state to state and community to community. In addition, because many respite services are funded with state and/or federal money, parents may need to meet certain requirements to receive help. For specific suggestions, see "Where to Get Respite Help."
Before contacting an agency or organization for respite services, however, parents should determine what kind of respite care they need.
"Sometimes your exhaustion is purely physical, and you need something as simple as a long, uninterrupted nap," Mintz of the NFCA said. "Other times you may be looking for emotional replenishment -- a chance to escape from the routine duties of caregiving and rediscover the parts of yourself that may have been neglected in the maze of jobs that fill each day. You may find such a break in church, at a museum, or under a favorite tree by the side of a pond."
Joan and Tim Lafferty receive a respite allotment from the Area Agency for Developmental Disabilities in Nashua, N.H., under the state Division of Health and Human Services. That allotment goes toward baby sitters and short-term respite. Through Medicaid, the couple has a home health aide two nights a week.
"Having two sons with muscular dystrophy, after a while you get tired," Joan Lafferty said. "Emotionally, it's nice to know someone's coming for that little break."
Ardin and Kathy Freestone of Soldotna, Alaska, have been using respite services for about two years. Their respite provider comes in three times a week.
"It's a relief," said Kathy Freestone, who has four children ranging in age from 6 to 14. Justin, 14, and Adam, 9, have Duchenne muscular dystrophy. "Working full time, then caring for the children and the special needs of the boys, it takes up a lot of time."
Freestone said respite offers her and her husband a chance to "be together as a couple." She is an assistant manager for a local convenience store and her husband, a former oil field worker, receives disability income.
The couple uses respite care from Frontier Community Services, under the state Department of Mental Health with Developmental Disabilities. Ardin Freestone said he has been extremely pleased with the agency and the break respite care provides him and his wife.
"If we want to take off and see a show or get something to eat, we can just go and not have to worry about it," he said.
Worrying about whether your child is being properly cared for is among the greatest reasons why parents resist respite care, health professionals say.
"They've become the expert," said Joe Fitzpatrick, a clinical psychologist and MDA support group facilitator in Portland, Maine. "A piece of them doesn't want to give that up and a piece of them doesn't trust."
Fitzpatrick said that a child with a disability often becomes the focus of the family, and parents tend to put themselves second.
"They do feel guilty to go out and have fun," Fitzpatrick said. "'I feel guilty running when my child isn't running anymore,'" he cited, as a common example of how parents feel. "If the parents are burnt out, then they can't present the stable foundation the kids look for."
Fitzpatrick said a child's disability shouldn't stop parents from continuing the parts of their lives that make them a couple and, therefore, a family.
"Kids have enough struggle with thinking that they're different," Fitzpatrick said. "Kids look to [parents] to normalize things as much as possible. It's like the foundation of a house. If the foundation isn't strong, the building crumbles."
Respite care is a way for mom and dad to get back in touch with who they are, Fitzpatrick said. It's a critical piece of survival when there's a chronic illness in the family.
But respite has to be respite.
"Respite is not talking about chronic illness for two hours," he said. "This is a break -- mentally and physically."
For most couples, respite has to be scheduled and both parents must take their respite time, both together and separately.
"You have to make it a date," Fitzpatrick said. "Make it that formal. There has to be an extreme commitment to do it. One parent may not feel good about going golfing every Saturday if mom won't go shopping when it's her turn. If one does, someone feels guilty and someone feels furious."
Arlene Marquis of Litchfield, N.H., thinks couples hesitate to use respite care because they're afraid something will happen when they're not home. Guilt becomes a barrier to respite.
"Things still happen, even when you're close by," said Marquis, whose 8-year-old son, Daniel, has spinal muscular atrophy. "We can't always be there," she said. "[Daniel's] a regular kid. We've just accepted it and we don't let that fear keep us from doing things or keep him from doing things."
Marquis and her husband, Paul, a design engineer consultant, have four children plus a daughter who died in 1993 as a result of SMA. Marquis, who home-schools her children, is a strong believer in respite.
"It's so good," she said. "It's so important not to have any of the kids sometimes. But with Daniel, there's so much physical work with his care, it gets draining."
Marquis has been able to rely on her mother, but at 70 years of age, her mother now needs a little extra help. Marquis' eldest son, Adam, 15, helps with such tasks as lifting and toileting Daniel. Marquis also has help from a neighbor she met through MDA who understands the needs of someone in a wheelchair and can lift Daniel on her own.
Besides giving the parents a needed break, health experts say, respite care allows the child to develop relationships with those other than family members. This helps children learn to communicate their needs, a skill they may need to use in managing personal assistants later.
Ellen Berk, a clinical social worker and MDA support group facilitator in Englewood, Colo., said it's important for parents to help children with disabilities develop a strong personality so people can see past their physical disabilities.
"Their greatest fear is that no one will love them," she said. "You want to foster healthy relationships and independence. You can be too dependent on each other and not have separate adult lives."
One way to promote a child's independence and identity is to make sure parents take time for themselves.
"When you're dealing with any chronic illness, no one can be in crisis. You have to have a break from that in order not to get burned out," Berk said.
"Everybody in the family should learn how to lift, or work with a ventilator, but they don't have to do it all the time. That creates a potential crisis," she said. She advised that children with disabilities develop "their own system for maintaining their health. You can't join them in their body, in their illness."
Mintz of the NFCA said respite is a time for renewal.
"I usher in the ritual of respite," Mintz said. "Massage. A bubble bath -- yes, for the guys, too," she said. "Candlelight, soft music, a cup of tea and, to be really decadent, a piece of chocolate. But it must be done by candlelight."
Quest thanks Loews Cineplex, Mikasa stores, Keaton's Arizona Grill, Heritage Highlands Golf & Country Club and Omni Tucson National Golf Resort for assistance with the photos in this article.
Where To Get Respite Help
To find out about respite services in your area, you can call the local Medicare or Medicaid office, local Department of Social Services, the state's Department of Health and Human Services, state Department of Children and Youth Services, as well as churches and synagogues. In addition, your school district might have information about respite care.
Linda Baker, director of Access to Respite Care and Help (ARCH), said most respite care is covered under Medicaid through several types of Medicaid waivers. Federal regulations don't permit Medicaid to cover costs for respite care because it's considered a non-medical expense. But states can design their own waiver programs and many states have more than one waiver.
The Home Community Based Service (HCBS) waiver, for example, is considered the leading source of funds for respite care, and about 70 percent of state HCBS waiver plans include respite care, according to the ARCH National Resource Center for Respite and Crisis Care Services. Under this waiver, families may need to meet low-income requirements so check with your state's Medicaid office to find out.
Another waiver, the Personal Care Benefit waiver, doesn't specifically target money for respite care but does allow a person with a disability to use the services of an attendant or outside caregiver. Use of this service can give a break to the primary caregiver, most often mom or dad.
In addition, the Personal Care waiver is based on the income of the individual needing the care, not on family income, so more families may be eligible for such assistance, according to the ARCH National Resource Center.
While eligibility for waivers varies from state to state, potential funding for respite services may be found in several federal statutes. Although respite care is not specifically mandated by any of these statutes, it may be listed as one of many family support services that are eligibile for funding. In most cases, a state or locality has the authority to fund or not fund respite services.
For example, in 1986, the government provided states with funding to start up respite care under the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act. But in 1996, that legislation, and the funding, were consolidated into the Community Based Family Resource & Support (CBFRS) Grant Program. As a result, Baker said, states can elect to fund or not to fund respite through that grant program. While some respite organizations may not be able to survive the loss of financial assistance, those that started with federal funds and then sought funding elsewhere most likely will be able to continue, she said.
Meanwhile, during the last two years, legislation has been proposed in many states to create respite programs for all disabilities and all age groups, said Jill Kagan, chairperson of the National Respite Coalition. Such legislation is largely a result of coalition effort. To date, coalitions have been formed in 26 states and more are expected in the coming months, Kagan said.
Another avenue of help families can try is the Child Health Insurance Program, which was enacted as Title 21 of the Social Security Act in 1997. The program helps states provide health care assistance to low-income children in addition to what they may receive under Medicaid.
For more information on respite care, contact the following organizations:
ARCH National Respite Locator Service
Chapel Hill Training Outreach Project
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
Family Caregiver Alliance
425 Bush St. Suite 500
San Francisco, CA 94108
(800) 445-8106 (CA only)
Medicaid and Medicare
Health Care Financing Administration
(410) 786-7144 (Medicaid hotline)
(800) 638-6833 (Medicare hotline)
National Family Caregivers Association
10605 Concord St.
Kensington, MD 20895
National Parent Network on Disabilities (NPND)
1200 G St. NW, Suite 800
Washington, DC 20005
National Respite Coalition
4016 Oxford St.
Annandale, VA 22003