Caring for a Disabled Sibling
By Holly St. Lifer
Children who grow up with a sibling with special needs often feel like they’re the only ones. But according to a survey conducted by a division of the Department of Health and Human Services, more than one fifth of US households with kids have at least one child who is disabled. The total number in this country is 10.2 million.
For many, deciding who will care for a sister or brother once parents die or become too frail, is rarely discussed. So we thought it fitting to get a conversation going. We spoke to three women, all 50-plus, who have disabled siblings.
Joanne Vargas had a younger brother, Robert, with Downs Syndrome. (He died this year at 61 of Alzheimer’s disease.) He lived with their parents for most of his life until their father died and their mother became too old to continue the daily caretaking alone. Although Robert was “high functioning and jovial, and could be understood, get dressed and bathe and feed himself,” he needed constant supervision.
Since she was ten, Terri Lee Ryan’s sister Lisa has been in multiple group homes and intermediate care facilities. Her parents continue to bring Lisa home every other weekend. Nonverbal, she has tantrums when she can’t be understood. She’s hyperactive. When Terri Lee’s parents die they expect her to assume the same level of commitment to Lisa.
Clare Mauch, is the oldest of four siblings and her sister, Allyson is the youngest; they are ten years apart. She always lived at home with Clare’s parents until their father died and like Joanne’s mother, Clare’s was unable to do it alone. Clare moved Allyson into her house for a year while she scoped out the best home for her. Although Allyson “can point to make her needs known,” she can be volatile and sometimes pinches and bites herself and others.
Why did the responsibility fall on you? Was it openly discussed?
Joanne: We never formally talked about it but it was always understood. I have a younger sister but I was divorced, and my daughter was grown, whereas my sister had her husband and younger kids. I also lived in the same house with my parents; we had a two-family. So I just stepped in. But I wouldn’t have had it any other way. With all the great times I was able to share with Robert, I wanted to be the one with him.
Terri Lee: I have made it clear to my parents for 50 years – although I have to reiterate it almost every time I speak to them – that I don’t want the responsibility. I continue to stay strong in communicating to my father that my relationship with Lisa won’t be the same as theirs. I don’t think it’s selfish to say I matter. I didn’t ask for a disabled sibling. I have a right to my own life.
Clare: Because I’m the oldest I assumed a lot of the responsibility while I was living in my parent’s home. It was never openly discussed and after my father died in 2005 there was no plan in place. I remember thinking: I’ve got a husband and two daughters in middle school, what am I going to do? My other siblings were also married with much younger kids. With trepidation, I took Allyson into my home temporarily. Because I’m a school psychologist I knew assisted living could be a good situation and that there were medications that could help with her volatility. We found a good home five blocks away and that’s where she is now. My mother was not happy about it but she has come to accept it.
Can you remember a time when you felt particularly resentful?
Joanne: I never felt resentment. Growing up my sister and I had a lot of friends and no one minded coming over our house and being around Robert. He was always friendly and the life of the party. When we were much younger, I sometimes felt embarrassed if he acted out in the street; I remember people would stare when we were out of our neighborhood. That seemed strange to me and I’d feel bad and protective of him.
Terri Lee: It was more of an awareness that no matter what I was going through Lisa always took precedent. She was born with a club foot and had other health issues that produced constant drama. She got the croupe a lot for example and I can remember her often turning blue. Or she’d get frustrated because she couldn’t communicate; I have one memory of her punching her fist through a glass door and cutting a vein. Rationally I understood she needed a lot of help but I still felt ignored and angry about it. I think it’s important to acknowledge those feelings that result from always being pushed aside without feeling guilty about them.
Clare: I resented a lot of things; that I was never free to go and do as easily as my friends, that Allyson’s needs took top spot over the rest of us, that we were all frequently pinched and bitten and that’s just the way it was. When I left my parents’ home for college I realized there were options available for Allyson and families like mine that my parents would never begin to consider.
Was there a defining moment when you thought, “My sibling can no longer live at home?”
Joanne: Soon after my father died, I was at work and I got a phone call from the home health aid that came in to help my 90 year-old mom. “Robert’s pajamas are on his bed and he’s gone.” My mom was asleep in her chair. I was in a panic but all I could do was call the police. Normally, he’d get picked up by a school van to attend a day program but sometimes he didn’t want to go. On this particular day I figured out he’d probably changed his mind and gotten on the city bus that ran by my house. I knew he wouldn’t get off until the end when the driver would say, ‘last stop, everyone off.’ The police sent out cars to the end of the bus line. Meanwhile, Robert had gotten off the bus, crossed an 8-lane highway, walked to a gas station and told a man there that he wanted to go to school. He handed the man the school phone and the kind soul called the school and made sure Robert stayed with him until the police arrived.
Terri Lee: My sister hardly slept so we were always up all night with her. My mother was totally against sending Lisa anywhere but my father took us into the kitchen one morning and said we were going to put her in a home and that if we didn’t we’d all be destroyed. He made it clear this wasn’t up for discussion. I felt relieved. The house went from chaotic to silent. I thought my parents would pay more attention to me but that didn’t happen. They knew she’d never come home again on a full-time basis and it felt like a death to them. So it affected their marriage and there was a lot of arguing.
Clare: It was more like a slow and steady progression of wear and tear on me and my family. Allyson was dependent for all things, dressing, toileting, bathing, eating. I was very tired. I had to make sure my children were never hurt when she was out of control. I needed more breaks than I got and was grateful when we found a home for her.
Do any of you have closing thoughts?
Joanne: I think it’s impossible to articulate the emotions that go along with the caretaking of anyone. So I feel like my responses to your questions seem cold. The biggest toll is having to make decisions for them throughout their lives and always hoping you’re making good ones and doing the right thing.
Please keep this conversation going. If you have a disabled sibling, FiftyisthenewFifty would like to hear from you.