The Unspoken Side Of Caregiving

The Unspoken Side Of Caregiving
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With the growing number of Americans reaching the age where illness becomes more prevalent, much attention has been focused lately on the important role of the caregiver. In New York State alone, some four million people serve as caregivers in one form or another. That's why the state senate passed the CARE act, which went into effect in April of this year. Among other things it requires hospitals, when discharging patients, to offer instructions to the caregivers on tasks they may be required to perform at home, such as administering medications, changing dressings, even how to operate medical equipment.

One area that hasn't received much attention is how to prepare the caregiver for the practical consequences of the death of the patient, particularly if it's a spouse.

This point was driven home to me dramatically the other day when I bumped into a friend whose husband had recently passed away. The first thing she said to me was, "I'm falling apart. There are so many things to take care of it makes my head spin. I didn't even know anything about paying the bills. Ben always used to take care of that."

Over the span of several years, Ben's illness would come and go, and during his better days he kept promising to make a detailed list of everything involved in the running of the household. But then an episode of poor health would derail his good intentions, leaving him list-less in more ways than one.

So now, from his widow's standpoint, it was like inheriting an estate and not even knowing how to contact the gardener.

Instead of being free to mourn the loss of her husband of some forty years, my friend was burdened with endless household matters. "Is this what it's like for everyone?" she asked me, with tears in her eyes. Not for everyone, but sadly for many.

Most households revolve around a division of labor, and it's hard for a spouse or companion to hand over their share of the household responsibilities while they still feel they're able to function.

I'm reminded of how depressing it is for seniors to surrender their driving licenses, when their night-driving eyesight is no longer what it used to be. It's like telling them, "You're no longer fit to drive." Asking a spouse who's been paying the bills all along, to hand over that responsibility, is like saying "You're no longer fit to manage our finances." While that might be the case, the spouse in question is likely to feel that they've just had their driver's license taken away.

So how does a caregiver approach this delicate subject while there's still time?

One way might be to turn the subject around and focus it on the caregiver. "Let me help in paying the bills. All my friends help, and it makes me feel inadequate not to be doing my part." Or, "How about switching responsibilities for awhile, so you'll know how to do the things that I do, in case something happens to me."

At the very least, "Ben" should be encouraged to make that list he's talked about, of everything involved in the running of the household. In general it would be a good idea for the doctor in charge of a declining patient to prepare the spouse/caregiver by raising the question, privately, "Who pays the bills?"

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