Caregivers in Need of Care: Who Needs Who?

My son Charlie needs a lot of care---always one-on-one at least. Jim and I are his sole caregivers at this time. We love our days with him, and, well, we get tired. (And Charlie does best when he is very active, as in regular bike rides and walks that are a couple of miles, and long swims in the pool---tiredness-creating activities and we ain't getting any younger.)

Carers breaking due to stress, says a June 8th BBC report about Wales. According to the report 75% of carers had reached their "'breaking point'" and "68% had not had a respite break for more than a year and, of these, a third have never had a one."

Here in the US, the June 6th New York Times reports on how the economic downturn has "placed special stresses on the estimated 44 million Americans who provide care for an elderly or disabled relative or spouse, many of whom have already made themselves financially vulnerable trying to balance work and family." The New York Times describes three families, in which adult children have had to leave their jobs to take care of elderly parents who require round-the-clock care. Says 55-year-old Marianne Szalega:

“There isn’t going to be anybody around to help us, so we have to prepare for our own future,” she said.

“But how?”

Both she and her sister, Carol Szalega (who lives with their parents), have no children.

All of this rings a lot of familiar notes for Jim and me. Throughout the years, my parents have been dedicated to watching Charlie for many hours on their regular visits here (they live in California), but they've themselves gotten older and have their own health problems. (And I'd love to take Charlie on a quick visit out to see them and the rest of my family, but the last two trips out to California have been very tough on Charlie, who seemed completely unmoored without his familiar surroundings.) We've had some fabulous young women babysitting over the years, but they've moved onto other things and aren't as available. Taking care of Charlie comes with numerous responsibilities and we can't just ask anyone. We're on the mile-long waiting list for respite services in New Jersey, along with a lot of other families, and I'm not even sure if the respite workers would be the right match for Charlie.

And yet, our many efforts and energies over the years to take care of Charlie have taught Jim and me how it's not a one-way street of dependency. Of course, Charlie relies on us for, oh, pretty much everything. But more and more, we've realized how we depend on him. Taking care of Charlie has made me much more aware of how I much I need other people---Jim, Charlie, so many people at my job, so many friends all over the Internet, my parents, various aunts and uncles and cousins. It's not just that Charlie is disabled and "has needs"; more and more, we feel that we, even while we're taking care of him, a lot more is being given back.

This post to be continued later today.