College senior Roy Avery defines the difference between a parent and a caregiver this way:
“A caregiver is someone who’s there to help you meet your needs.
”A parent has a vested interest in your well-being and future. They love you.”
Avery, 23, has Duchenne muscular dystrophy (DMD) and can’t lift or position his arms and legs. He relies on a power wheelchair and noninvasive ventilation to help him maintain a B+ average in computer science at Central Washington University in Ellensburg.
Avery also depends on the full-time assistance of his parent-caregiver Ann, who lives with him in on-campus housing.
There’s another crucial difference between parents and caregivers, Avery says:
“Caregivers can quit their jobs for any reason. A parent cannot quit being a parent. It’s their built-in instinct.”
This article is for all parents who are also caregivers to children with serious disabilities. When these children become adults — as more and more are doing — they quite naturally want independence from their parents.
This transition to independence is tricky for all parents, but especially so for parents of children with neuromuscular diseases. As experienced parent-caregiver Patti Hackett asks: “Can you treat someone as independent when they need you for everything?”
Hackett supplies her own answer. “You can.”
’Everybody has a life’
The transition from dependent child to independent adult normally begins somewhere in the teens and ends somewhere in the mid-to-late 20s. Traditional definitions of adulthood include completing school, landing a job, marrying, having children, and establishing emotional and economic independence from parents.
When a child has a disability, the transition to adulthood is less clear-cut. Parental support may always be part of the picture. How then to define independence?
“There are degrees of independence,” explains John Reiss, associate professor of pediatrics at the Institute for Child Health Policy at the University of Florida in Gainesville.
When children have disabilities, instead there may be a move to interdependence, he says. Interdependence may include ongoing physical and financial support, but with boundaries, responsibilities and, Reiss emphasizes, “no victims, no martyrs, everybody has a life.”
A balancing act
In a world of sharply rationed attendant care, parents become more, not less, crucial as children with neuromuscular diseases get older. The free daily care provided by public school ends at high school graduation. Medicaid-funded assistance with daily living tasks varies widely from state to state. Even if funding is available, it’s hard to find qualified people to fill the hours.
Parent-caregivers can get stuck in a kind of limbo, seeing themselves as forever in charge of their children’s lives, even as they give up their own lives in service to them.
“The parent doesn’t give the young person independence and the young person doesn’t give the parent independence,” says Robert Gibson, a research associate at the Institute for Child Health Policy. This dynamic is hard on mental health and marriages. Many parents end up feeling “angry, frustrated, burned out and guilty,” Reiss says.
Marty Stevenson of Frederic, Mich., can relate. Stevenson quit her job to care for her son Tom, 20, who has DMD, when he graduated from high school. Now she works 24 hours a day.
“I hate saying it, but I’m kind of tired of it,” she says. In addition to providing personal care, Marty drives Tom to classes at a local community college and hangs around campus with a walkie-talkie, waiting for him to finish.
At night she arises several times to reposition him in bed. She and Tom frequently bicker, especially about how she’s doing things for him, like putting on his shoes.
Notes Roy Avery, “The hardest part about the transition to independence is the parent having to give up their instinct to tell you what to do.”
His mom, Ann, agrees. “You cannot transition away from being a parent.” But she also realizes that emotionally and mentally Roy is becoming an adult, despite his physical dependence on her.
“So I act like a mother but also consciously work toward my role of being a caregiver to a very separate person. It’s a balancing act that could either smother my son or leave me without time to myself and my needs.”
Envision a future
In order to successfully balance between these extremes, parents need to encourage their children to become as independent as possible. Two key elements help make this happen: starting early and envisioning a future for both your child and yourself.
“Society has the expectation that children will grow up and move out,” Reiss says. “When a child has a chronic condition or limited capacity, parents may not have that expectation, or encourage their children that their goals should be the same.”
Notes Patti Hackett of Rockville, Md., “It’s important for everybody to grow up and have a life.”
For 30 years, Hackett was parent-caregiver to her son Glen Gallivan, who had spinal muscular atrophy (SMA). Gallivan died in September 2003. At the time of his death he used a ventilator, could move only his left index finger and required round-the-clock care. He also worked a steady job out of his bedroom as a horserace handicapper, which brought him an income, great pleasure, national recognition and many online friendships.
Hackett, a single mom, provided all of Gallivan’s care and at the same time telecommuted to her job as director of Healthy and Ready to Work National Center, a federally funded transition program for children with special health care needs (www.hrtw.org).
From an early age, Gallivan was coached to be as independent as possible. At age 4, he was presenting his health insurance card at doctor appointments. At 9, he began signing informed “assent” forms for medical procedures.
At 10, he called in his own prescriptions, and thought up five questions to ask at every doctor appointment. He learned to keep track of his baseline health statistics, like respiratory and heart rates, and urine output/color, so he could report changes when he felt ill. By the time he was an adult, he ordered all his ventilator supplies himself and directed the use of a signature stamp to sign forms.
Naturally, these early lessons encouraged Gallivan to act more independently. This wasn’t always easy for Hackett. When the two disagreed on his pain medication when he was 14, she reluctantly yielded to his wishes.
“It was his life. His body. You need to ask, what can this person decide for themselves?”
Parents must realize, she emphasizes, that “we may speak on behalf of our kids, but we’re just their representatives.”
Experienced parent-caregivers offer these tips for encouraging independence:
- Create opportunities for kids to take charge. For example, have them make lunch by telling a caregiver (with respect and courtesy) exactly what to get out of the refrigerator and how to fix it. Starting about age 12, have them meet privately with their doctor for some part of each visit. Devise realistic chores and make sure they’re completed.
- Help children get used to receiving — and directing — care from someone other than parents. While no one can provide the same quality of care as a parent, outside assistance enables more independence for everybody. Part of adulthood is knowing what to do when a service is provided poorly. Although some children only want care from parents due to embarrassment or discomfort with others, “it sounds harsh to say, but that’s life,” says Reiss.
Knowing how to ask for help from strangers also is a skill, says Ann Avery.
“I put Roy out the door in the morning knowing if his hand slips off the wheelchair control he will have to ask someone for help. Yet, this is a way of becoming independent.”
Gibson says, “Parents need to move from ‘I’m doing it for you’ to ‘I’m here coaching you how to direct others,’ to ‘I’m here as the person you need to direct.’”
- Push ‘em and let ‘em go. Expose children to a wide variety of experiences and encourage their participation in outside activities. Stevenson’s son, Tom, volunteers in public school and church projects because “we all have to give back,” Stevenson says.
- Know that independence can be scary. “I always told Tori to go out there and see what life has to offer,” says Rose Authement of Houma, La. Tori, 21, has SMA type 2, and uses a power wheelchair and Medicaid-provided aides to attend community college.
Not surprisingly, Tori believes parents should “always make your children go to the fullest. Don’t ‘babify’ them.”
While proud of her daughter’s independent mindset, Rose also frets, especially when Tori goes out with friends. “I’m a nervous wreck. I have to give her that freedom but it’s really hard. Do I want to let her go? No. Am I going to? Yes.”
Adds Ann Avery: “I bite my tongue and let Roy go places or do things the mother in me doesn’t want him to do. Sometimes the college social life is hurtful to feelings of self-esteem, but I have to stand off and let those feelings get hurt. They say you should give your children roots and wings — in our case it’s roots and wheels.”
- Don’t take over. “I have the patience of a gnat,” confesses Karen Hofsheier of Omaha, Neb., a full-time caregiver to her son Craig, 29, who has DMD.
“When Craig was younger and still could do things for himself, I would try to hurry him along.”
Although difficult, defer to your child when possible. Ask questions, but respect choices. Sometimes this involves accepting decisions with which you don’t agree — a hallmark of healthy adult relationships.
Be willing to not be in charge of everything. There’s no greater teacher than a mistake, says Hackett, so long as parents are willing to let children experience the consequences. If they forget to charge their wheelchair batteries and get stuck at school for a few hours, they probably will remember in the future.
- Get the right equipment. Technology can be a ticket to independence for both parent and child. Extensively research options in wheelchairs, ventilators, lifts, computer software, environmental control units, even telephone headsets.
Don’t let the price tags deter you — once you know what you want, there usually are ways to get it, Hofsheier says. “We’ve learned how to fight the good fight to get the equipment.”
- Give ‘em room. Don’t hover when peers are around. Find ways to make your son’s or daughter’s living quarters as private and accessible to friends as possible.
Spend time separately even when you’re both at home; Hackett and her son each telecommuted from separate rooms of the house.
- Create your own life. When Ann Avery went to college with Roy, she decided to finish the degree she’d abandoned 32 years earlier. A sociology major, she takes two classes a semester, fitting them around Roy’s schedule.
Hackett made time for massages and pedicures. Hofsheier schedules respite care every Wednesday, even though Craig begs her not to go because he prefers her care.
“I tell Craig, ‘If you want me to continue to do what I do, I need time away,'” she says, adding, “It makes me feel terribly guilty. But you have to take time for yourself.”
Many parents lose sight of their own lives in the intense glare of their children's needs. They do it all alone without looking for outside sources for support. Asking for and finding help are difficult. But caring for the caregiver is an essential piece of fostering independence.
- Talk about it. Together with your child and other health care and social service professionals, develop a written plan for the future. Look at needed services, finances, hopes and dreams.
“Communication and a mutual understanding are helpful,” Roy Avery says. “Think about this transition before you go through it. Consider what you are doing as a parent now, and what will be different when you take the role of a caregiver. Look at the situation from the child’s point of view and vice versa.”
- Relax. No matter how hard you try, there always will be bumps in the road.
“Work out a partnership with your child, but remember that you will always be the mom and it seems that moms inevitably embarrass their children from time to time,” Ann Avery observes.
“Laugh and go on. What are the alternatives?”