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Perspective is important when caring for an adult daughter with a disability

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February 20, 2017, by Pat Morden, Caregiver Exchange

Joan and Paul Vogel are grandparents in their mid-60s. But unlike many people their age, they’re not taking up new hobbies, traveling the world, or spending the winter in warmer climes. Miriam, their adult daughter with disabilities, will live at home for the foreseeable future.

Many parents of adult sons and daughters with disabilities face the same reality. Joan says for her, it’s all a matter of perspective. “You tend to look at what other people at your stage of life are doing,” she says. “But Miriam brings us a lot of love, she brings a lot of people into our lives, and we really enjoy being a family. As long as we maintain that point of view, we don’t weigh ourselves down with comparisons.”

There were lots of challenges when Miriam was school-aged, and even more when she finished high school at 21. Says Joan, “It was like standing at the edge of a cliff, looking down and saying, ‘What do we do now?’”

What she did was organize a schedule that ensures Miriam has meaningful activities most days of the week, while giving Joan a little time on her own. Miriam has piano lessons, volunteers at local schools and an insurance office, and spends time with three helpers. On the weekends, she accompanies her parents to their cottage in Grand Bend. “We seek the best arrangement for her, and we’re always striving for what that might be,” says Joan.

When the Vogels want to travel, they plan trips that work for Miriam as well. “In the perfect world we would have better in-home supports so that Paul and I could have some respite. But with an adult daughter with disabilities it’s hard to find the right person.”

The future is always a worry, Joan admits. Gord, her brother with a disability, lived at home until he was 18 and then moved to a L’Arche home. When Miriam was just three, Joan and Paul got involved with the nascent L’Arche London group, thinking that Miriam could live in L’Arche community when she was an adult. London now has three L’Arche homes, but there’s a long waiting list. “It’s scary to think about when we’re not here,” says Joan. “Our dream remains that Miriam could be embraced in L’Arche with a peer group she could relate to.”

Again, Joan says it’s perspective that pulls them through. “We tell ourselves we can do it today, and when we get up tomorrow morning, we’ll be able to do it then. We just try to relax into the situation – we don’t know what the future holds any more than our neighbours know what their future holds. So we just say, ‘That’s the way it is, we’re going to have a happy home.’”
 

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