A co-op model of care for adult children
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s.
Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30. We’re in our mid 50s. Our sons have severe mobility limitations and David and Patrick both require vents, but in general
their health is good. They all have wonderful attitudes, great personalities and are a pleasure to be around.
Our two families became friends about two years ago. Recently, we moms realized that — lo and behold — we’re getting older. Physically caring for our guys is becoming increasingly difficult. It’s not inconceivable that they could live 10 or 20 more years. What are we going to do then?
We realized that we need to be able to take breaks from caregiving without feeling guilt or fear that our guys aren’t being well-cared for. Also, our sons need to exercise a little independence from us and know that arrangements are in place to care for them when we’re no longer able. So we began to plan for the longevity we did not anticipate for our children, as well as for our own old age. We’ve come up with an idea we think will work for us and perhaps for others in similar situations.
Respite for all
For about a year now, the Beard and Abramowitz families have been sharing the care for our sons. We’ve discovered that caring for multiple men with DMD isn’t that much harder than caring for one or two. Both of our homes are set up to accommodate multiple persons in wheelchairs.
Sometimes Adele stays with all three guys for a few hours or even up to a week. Sometimes Jason goes to stay at the Beards’, bringing along his nighttime aide. When our guys get together, it’s like adult camp, with respite for all. They enjoy socializing and arguing, watching hockey, waging PlayStation3 battles, ordering Chipotle takeout, having a deep soak in the whirlpool tub or just floating around in the pool with a cold drink.
|The co-op families, from left: Jason Abramowitz, Adele Abramowitz, David Beard, Vickie Beard, Patrick Beard. Oh, and that's Shelby, front and center.
And so we got an idea. Just like a co-op for nursery school, we could form a co-op of care for our guys with DMD. We’ve experienced almost everything DMD can throw at us, including spinal fusion and mechanical ventilation. Over the years, we’ve become mini specialized DMD hospitals. We have an enormous amount of compassion for our guys and anyone who has suffered similarly. Why not share what we have?
There are many guys out there with DMD who are living with elderly parents or in nursing facilities with no family or home life. We imagine these guys have a very boring life. A co-op approach could be a welcome addition to their care.
Turn to each other
A co-op approach offers respite, companionship and even a long-term home to young adults with DMD or other muscle diseases. Participants can pay or trade care hours. With the proper hired staffing to do the exhausting morning regiment, there’s only the need for someone to act as “overseer” to make sure the guys are never without staff.
People can co-op for care when funds are not available, or one family could provide weekly care for a single parent who needs to work full time. In some cases, people even could trade houses, so that each family can get a short break.
Our families have each put our homes into a special needs trust for our sons, with the plan of leaving the homes to them, and anyone who lives with them, when we’re gone.
Of course, we’ll remain active and present for as long as we can — which we believe will be easier with this kind of respite in place. Only in the last few years has there been recognition that our guys are living longer, with greater and more varied needs as they mature in a body broken by DMD. This is a situation that’s going to become even more of a problem as our children live into their 30s, 40s and even 50s.
For so long there has been nowhere to turn for parents of adult children with DMD — but we have realized we can turn to each other. We plan to try to establish a co-op in our area, where families can trade caregiving. We hope that this idea will inspire families in other areas to pool their resources to make life better for both their guys and their families.
It’s 2010 and we’re all still here.
Finding reliable caregiving help and achieving maximum independence are universal concerns for people with neuromuscular diseases and their families.
In this issue of Quest we look at two unique solutions to these problems: this story and "A Happy Compromise".
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