Taking the Long Way Home

The woman sat next to me, weeping with weariness and frustration.

She was the fulltime caregiver for her mother with Alzheimer’s. And she wasn’t sure she could take it anymore.

My heart ached for her, but . . .

As a minister, it’s not unusual for someone to approach me with a problem I have no idea how to solve.

I don’t even know the right words to say.

So I’m asking you: What do caregivers really need?

HELD HOSTAGE

How many millions of people are taking care of parents or other relatives with some form of dementia or debilitating illness? How many are giving baths or feeding those who can no longer perform basic tasks for themselves? (An estimated 40-million caregivers in the United States, according to AARP.)

And how much of your life are you supposed to give up to help others?

If I could wave a wand and change one thing in the world, I think it would be to abolish the need for long-term caregiving. We’d all just be happy and healthy until the day we die.

Maybe the caring brings blessings I don’t realize.

But for the unpaid family caregivers I talk to, this period of their lives is grueling and seems endless. They sometimes feel like hostages, even if they are being held captive by their own loving hearts.

WHAT WOULD HELP?

What can I say to them that won’t sound glib or dismissive? Is there a way to reframe the situation that makes it more bearable?

A quick Internet search yields caregiving tips and blogs and quotes, programs and guides and support groups. Have you found any of them useful? Are there books that are helpful?

I know some people arrange for respite care, and others have home health workers who visit. Or hospice. Some have supportive families to share the load.

It may not be the daily tasks that are so exhausting but the unrelenting responsibility for someone’s care. It has to be factored into every decision – financial plans, vacation plans, professional opportunities.

I know so many people who have put their lives on hold to care for an aging parent, sometimes for a decade or more. Some felt they had a choice; many didn’t.

And I never know what to say to them, except I’m sorry. And how good of you to volunteer for this.

THE COMPASSIONATE RESPONSE

If you have been in this situation – or you’re experiencing it now – what would be the most meaningful form of compassion you could receive? Is it words or actions?

And what about your friends and family? Has anyone ever said or done exactly the right thing, something that touched you so much you nearly wept with gratitude?

I really would love to hear about your experience. Because this problem isn’t going away, and I believe I am among legions of people who would be more supportive if we knew how.

I hope you’ll write about it below. (Scroll down a bit.)