The bond between siblings is special.
Brothers and sisters are a child’s first peer group, teachers, confidants and rivals. That makes the bond between siblings long-lasting and powerful.
But that bond can be tested when a sibling has special needs and a brother or sister is called upon to become the caregiver after the parents die.
“There is an undeniable bond between siblings which can be especially close when one has special needs,” said Joanne Gruszkos, founder and director of the SpecialCare Program, MassMutual. “But along with this relationship comes a unique set of circumstances and a great deal of responsibility.”
More than 54 million Americans have a disability, so the likelihood of caring for a sibling with special needs is high. According a 2012 study sponsored by MassMutual, only one-third of siblings surveyed feel financially prepared to assume the responsibilities of being the primary caregiver, even though 80 percent predict they will take over that role.
“For sibling caregivers, it’s critical to not only set realistic expectations, but also prepare financially, emotionally and physically,” Gruszkos said.
She said the unique circumstances faced by sibling caregivers include:
• Suddenly discovering they’re expected to become the caregiver once their parents no longer fill that role.
“The sibling caregiver may never have been told that they are going to have that responsibility,” Gruszkos said. “All these years, they may have had a brother-sister, brother-brother, sister-sister relationship, and now all of a sudden, they’re being thrown into a parent-child, caregiver-child relationship without any understanding of what that brings with it.”
• Not being equipped financially to be a caregiver.
“The secondary problem could be that there’s no money set aside to care for the person with the disability, and that may fall on the sibling caregiver,” Gruszkos said.
As parents age, responsibility for caregiving is more likely to fall on a sibling, so families need to prepare.
Parents of special-needs children need to talk with their other children about what provisions have been made for their special-needs sibling after the parents die. It’s especially important to talk with the sibling you want to take over caregiving.
“That’s so important that parents feel comfortable raising the issue with their other children,” Gruszkos said. “Most importantly, children should be asking questions. They should ask their parents outright, ‘What have you planned? What do you think is going to happen? What if?’ Get them to have the dialogue so at least all the feelings can get out on the table.”
Much of it has to do with family dynamics.
“In some families, there are very good, positive, supportive relationships where future caregivers want the responsibility,” Gruszkos said. “There are others who have felt neglected, abandoned – ‘My parents are putting all their time and energy into my disabled sibling and I got nothing. Why would I want to take care of that kid? He ruined my life.’”
That’s not the case with Mandy Dockweiler of Richardson, Texas, who will be the successor caregiver for her 29-year-old brother, Max Adamczyk, who is intellectually/developmentally disabled.
“I never really consciously thought, ‘I want to make this big decision and do this for my brother,’ ” she said. “When it came up, it was, of course that’s what I would do. I’ve always assumed that that’s what I’ll do when the time comes.”
The 37-year-old Dockweiler and her brother are very close.
“As kids growing up, we all had certain responsibilities,” Dockweiler said. “One of mine was baby-sitting Max with a lot of regularity … That’s partly where the bond really developed.”
Dockweiler’s family has heightened awareness of planning for a child with special needs because her father, Matt Adamczyk, is a special care planner for MassMutual in Dallas.
“We began special care planning a long time ago,” he said.
Siblings eventually become adults and may start their own families. That has to be considered.
“The situation with Max’s siblings is changing over time,” Matt Adamczyk said.
For example, when her parents asked her about 18 years ago to succeed them as Max’s caregiver, Dockweiler was single. Today, she’s married and has adopted two daughters, ages 9 and 12.
Max also has two brothers, one in Michigan and the other in Ohio. To keep them apprised of Max’s life, the family recently spent two weeks with each brother’s family, “so they stay aware of what he likes to do, what he doesn’t like, what’s in his best interest,” Matt Adamczyk said.
“We’re reviewing the various roles for the siblings – executor, guardian and trustee,” he said. “We’re trying not to put the whole load on any one of the siblings.”
Know where you stand financially before you take on caregiving of a sibling.
“You’ve got know your own financial foothold before you take on (caregiving for a sibling) because you could be assuming expenses and debt that you’re not going to be able to handle,” Gruszkos said.
Establishing a special needs trust can help. The purpose of the trust is to manage the family’s financial resources while maintaining the child’s eligibility for public assistance benefits.
It’s also important to talk about what impact taking in a special-needs sibling will have on the caregiver’s life.