Kudos to “Dear Carolyn” — Advice for Caregivers of Disabled Adults

While I don’t always agree with the advice columnists dish out, I was touched by this letter in the “Dear Carolyn” column in AnnArbor.com.  For those who care for developmentally disabled adults, having a support structure in place that is not dependent on the exclusive efforts of one person is truly a prudent choice.  Here’s the letter….

Dear Carolyn:My wife has five siblings, one of whom has developmental delays. We are in our 50s and 60s. In June 2008, I was asked to assist in obtaining benefits for one of the siblings (paperwork isn’t this family’s forte). In the process, I became friends with my brother-in-law.

We are in contact often regarding his progress, and I have come to realize he has had to traverse too many complicated and confusing things alone. I think the family may have assumed he understood much more than he actually did. My brother-in-law may not have expressed his confusion, wanting to appear “like everyone else.”

After 18 months, I have not had one request from any of the siblings for an update. If I dropped dead tomorrow, not one of them, including my wife, would have a clue where to pick up the fight for multiple benefits. Does this sound odd, rude or ungrateful to you?

— Nebraska

It’s unfortunate, I’ll grant you that. Without knowing anything about the road this family has traveled, though, I’m not going to judge the condition in which they’ve arrived.

Instead, please consider achieving your moral ends through relentlessly practical (if burdensome) means. Document everything you do for their brother, and draw up clear instructions — updated regularly — for someone to pick up wherever you leave off, should you … “leave off” tomorrow. Invite your wife and/or any remotely cooperative siblings to look over your shoulder, too, so you can teach them what you’re doing. Don’t wait for them to show interest; they may never. Just encourage and equip them to care.

What I appreciate most about this response is her intuitive understanding about this DD man’s family, who have doubtless been coping with his disability all his life. And doubtlessly are relieved to have someone who is willing and capable (the combination is a goldmine!) of handling the minutiae. It’s not that they don’t care. It’s very likely that they’re simply worn out.

It’s a thankless job at times … and one that perhaps this brother-in-law might wish he were getting more appreciation for doing. He’d be in good company — much of the work involved in tending to those with special needs is thankless, hidden, unrelenting effort.

It isn’t easy. But it is important.

If you are feeling overwhelmed and unappreciated today, know that you, too, are doing important work! It might not feel like it at times. And there will be times when you wish you could be doing ANYTHING other than what your hands are doing right at that moment.

It is your task to find the gift in all the unpleasant wrapping. Yours to find the cause of your joy, just for today. Just in this moment.

What is God asking of you right now, at this point in your Lenten journey?

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