Wednesday, June 23, 2010

When siblings step in (part 2)

Pat Ellingson (right) grew up in Vancouver in a single-parent family with six children living on welfare. As one of the older kids, she took on the role of caregiver for her younger siblings, including sister Carol (left) who has a developmental disability. What makes Pat unusual is that at the age of 50, she became Carol's primary caregiver. Carol had lived with their mother until she died, and came to live with Pat and her partner Carolyn at age 45. I had a fascinating discussion with Pat about her relationship with her sister.

BLOOM: Describe your sister Carol.

Pat Ellingson: She’s 50 and in some ways she’s very high-functioning. She can’t read or write, but there are a lot of things she can do. She’s had a job for 30 years. She works at Burger King and she’s the hardest worker in the place. She’s in Special Olympics and a star bowler. She curls and swims and plays baseball. She’s a very easy-going person.

BLOOM: What effect did her disability have on you growing up?

Pat Ellingson: I was one of the oldest in a fairly dysfunctional family and just like we didn’t know we were poor, we didn’t know Carol was any different than anyone else. There were six kids, and she was part of the chaos. It wasn’t until I was maybe 10 or 11 that I realized we have to be more protective of her. We knew she had special needs, but she was one of us. We were worried about a lot of things, but it wasn’t until I was a teen and getting ready to move out that I really worried about Carol. As the main caregiver, I started to think: What will happen to Carol? Who’s going to pay attention to Carol and get her in programs? A lot of the support systems in Vancouver are strained to begin with and they do a very surface kind of thing, especially for someone like Carol, because she isn’t in dire need.

BLOOM: Siblings often resent that the family revolves around the child with special needs. Was that an issue for you?

Pat Ellingson: No. Because there were so many kids, and because she had a certain level of ability, no one got any special attention. We were never thinking we can’t have this or that because of Carol, but there was always an underlying, undescribed stress. There were times she was made fun of, and we were always a little on guard, expecting the worst from others.

BLOOM: How did you make the decision to have Carol come live with you?

Pat Ellingson: It was a tough one in some ways but it just seemed to happen somewhat naturally. Carol lived with my mother until she passed away. She went to live with one of my other sisters, but it didn’t work out. We tried to see if she would be accepted into a supported-living program in Vancouver, but we learned she had to be homeless before they would take her. One of the issues was that she did work and was living with family. There are a lot of weaknesses in the system in Ontario, but boy, when you live in British Columbia, it’s the worst. When we knew it wouldn’t work for her to live with my other sister, it became clear that we were the best option. Sometimes you have to step up to the plate. Whether living with us is best for Carol is a continuing question. We’re now at the stage where she’s been accepted into a Community Living program.

BLOOM: What have been some of the benefits of having Carol live with you?

Pat Ellingson: It’s made me understand and appreciate her a lot more. At the end of the day I think it’s made me more empathic and accepting, not just of people with challenges, but of people in general. Carol is easy to be with, she’ll do anything, and she makes you realize you can’t sweat the small stuff. Living with Carol has also given me a very different perspective on everything from how health programs are funded to employment. For example, Loblaw’s has a fabulous hiring ethic when it comes to people with special needs, but at Wal-Mart, they’ll take people with special needs as volunteers, but they won’t pay them. Carol applied for a job at Tim Horton’s and she didn’t even get a call back, and yet the “help wanted” sign was still up the next week. That was a bit shocking to me.

BLOOM: What does Carol do in her job at Burger King?

Pat Ellingson: In Vancouver, she worked on the fry station in the kitchen, and here she’s mostly in charge of cleaning the lobby and tables. Thank God for places like Burger King because it was one of the few places we could get her a job. But what happens is that she’s the hardest worker in the place but she’s taken advantage of. She does all the crap work that the rest of them don’t want to do. But because she wants the job, she doesn’t complain. She's been spit on and even here, in the early days, one employee hit her and was let go. Those are the things we hear about. They roll off her back in many ways. She works four hours a day.

BLOOM: What does Carol get out of her job?

Pat Ellingson: It’s self-esteem. She gets paid. And it’s social and gives her a feeling of worth and confidence.

BLOOM: How demanding is it having Carol live with you?

Pat Ellingson: It’s become part of our life. I think it’s become more challenging the longer she’s been here mostly because we're constantly trying to make it all work as we think it should—as opposed to accepting that if she doesn’t iron her pants that day, what’s the big deal? I always go back to my childhood. If she didn’t iron her pants, it was a reason for others to make fun of her. But being controlling and protective of Carol is not best for her. We have a basement apartment for Carol. She doesn’t cook for herself. She lives in our house and we’re with her as much as we can be, but I’m not sure we're doing the best thing for her. I work a lot. We don’t have any friends who could come and take care of Carol if we’re not able to be there. The ideal would be a hybrid where she could live with us and still receive services so that she’s kept active and she’s not sitting at home alone or bored. But the way the support system is set up, unless she’s out of the home, there is no support. We do need a break, but the amount of guilt is terrible. We’ve been away for three weekends in five years.

BLOOM: What is the community living program she’ll be part of?

Pat Ellingson: We’re going to experiment with her living in an apartment within a stone’s throw of where we live. It’s on a floor where there are other folks with special needs from her bowling team. We hope it will give her more socialization on a daily basis—and then we’ll do things with her in the evenings and on the weekends. The biggest concern that keeps us awake at night is that we’re not going to be here forever. If we’re always doing everything for her, knowing she is capable of doing a lot more than we let her, then who are we doing it for? The easiest thing is to leave her where she is—with us—and the hardest thing is moving her elsewhere because this will be more stress on us and probably in the short term, more time required to make sure she’s okay. We want Carol to have a life that is rich and includes all the things she currently does and one where she’s protected—whether we’re there or not. I was in an almost fatal car accident recently and it struck me: What would happen if I wasn’t here? Thank God I have a partner who is committed to Carol. But she’s 15 years older than Carol. What happens when she’s not here? Who can I leave money to for Carol, and how can I make sure they take care of her? I don’t think you can ever assume that the system will take good and appropriate care of your sibling with special needs. We don’t want her to be thrown into a situation at some point where there’s no family to do the oversight and provide the extra support she needs.

BLOOM: What support will she receive through the Community Living program?

Pat Ellingson: They’ve assessed her to receive six hours a week of care from a support worker. But we know she needs daily care, to make sure she gets up and goes to work and is dressed properly. I don't think it’s that they don't understand her needs, but the program doesn’t have the resources. The plus of placing her there is that some of the other folks on the same floor have 24/7 care, so she’ll have the advantage of that, and all of the support is from the same group of support workers. There are also two things she’s been invited to be part of—a special advocacy group where she’ll be trained to be an advocate for special-needs folks, and a food preparation course. It’s unfortunate that these types of things aren't available to the person if you live with family.

BLOOM: What advice would you give parents?

Pat Ellingson: Every family has its own dynamic. I think it’s important to try to make sure everyone gets attention and to recognize when siblings are helping to care for a brother or sister. Make it something they should be proud of, but also let them know how much you appreciate it. I remember my mom would say: “She’s your sister. It’s what you should be doing.” I think highlighting that caregiving is “over and above” is important.
Pat Ellingson is creative head of children's media at TVO.