- The Washington Times - Friday, August 24, 2001

The Summer of '01 will be forever remembered as the Summer of Hospital Hell for me and my family.

We've been hanging out in the harried halls of Providence Hospital in the District so much that I am beginning to know some of the nursing staff on a first-name basis.

Just last week, we took up new residence at a "rehabilitation center" in Virginia. "Rehabilitation center" is a sweet-sounding euphemism for nursing home.

My mother has spent more days inside a hospital than outside since early May. Six weeks ago, the doctors were giving her little time to live.

In fact, when she was finally transferred to a rehabilitation center last week ("Praise the Lord") one of her many doctors told me, "Ms. Washington, I didn't think we'd get here. It was really touch-and-go there."

"Prayer" was the only thing I could think of to answer him.

Actually, praying was the only thing we could think to do for a heart-racing six weeks. My aunts and uncles literally held prayer meetings around my mother's bed. And even in her haziest moments, she would attempt to recite Psalm 23 with me.

It fell to yours truly to figure out how to get her the best care, keep her reasonably comfortable and maintain my sanity and civility under what passes for health care these days. "That's why they call it medical 'practice,'" a friend joked.

Talk about a need for patients' rights. I could write a book. I've never met a bigger group of people who can spend more time telling you why they can't do something as opposed to just doing it. Nike must have written that "Just Do It" motto for medical administrators. At one point, I didn't know whether to cry or curse to get a prescription filled because the D.C. government can't seem to keep my mother's Medicaid records updated.

If there's one thing I've learned as I've tried to maneuver through the maze of managed health care, it's that the sick and shut-in need health advocates. There is no other way to increase their chances of survival.

Someone needs to be there to ask questions, remember answers, fill out papers and argue against the rules or traditions that create so many roadblocks to care.

The way we treat the elderly, especially the poor or indigent elderly, is shameful given what I've witnessed during the past several years I've been the primary caretaker for my mother.

Lately, however, I've noticed more of my stressed contemporaries accompanying parents in doctor's offices, just as we did when our children were young. We are, after all, part of the burgeoning "sandwich generation," squeezed between caring for our children and our parents. Fortunately, I work for an understanding employer.

But too many sick people are just left alone. Their families can't or won't deal with their illnesses, which can take a heavy toll on caregivers as well as patients. It speaks volumes when health care workers think you're special simply because you don't just visit frequently but participate in the feeding or grooming of your sick loved one.

One doctor told me how he had operated on an elderly man in the middle of the night, and when he called the man's son to advise him of his father's procedure and prognosis, the son got angry. Instead of being grateful, he asked the doctor if he was aware that it was 3 a.m.

Even the dedicated doctors, nurses, aides, technicians, housekeepers and administrators can do only so much. Many are overworked and underpaid, and they seem to have as much difficulty remembering ever-changing insurance regulations. So heaven help you.

For example, I discovered that the nurses could not cut my mother's fingernails even though she was scratching her skin raw. So yours truly cut them.

When my mother started to recover and it was time to send her to "rehab," I visited several centers. How's this for sticker shock: One woman politely told me her facility does not accept Medicaid patients. The initial cost is $74,000; the monthly cost $3,000.

I'm glad I followed one bit of advice I got repeatedly from those who have worked in these institutions: Wherever you place your mother, make sure it's near where you live or work so you can visit often.

Being there makes all the difference, I'm told. It's not just so your loved one doesn't feel abandoned but it's the only way to make sure that they get the minimal care they are required to have under the law. That's two hours a day in Maryland (and that's not all for personal one-on-one care.) The rest is up to you.

So, it comes as no surprise to me that reporter Marjorie Hyslop of The Washington Times writes that elder care will be a big issue in the upcoming Maryland gubernatorial race.

The group "6-to-1" seeks to establish a 6-to-1 patient-to-staff ratio in Maryland nursing homes, which currently have about a 12-to-1 ratio, according to the Mid-Atlantic Non-Profit Health and Housing Association.

With the population aging, state and federal governments are facing a major crisis. Nursing homes are routinely understaffed because they have been traditionally underfunded.

You can wait for the politicians and bureaucrats to work it out if you want to. But I think all of us who are maturing or have parents increasingly in need of intensive health care services may need to get busy lobbying for better benefits for all of us.

And we'd better do it before we come face to face with the heart-racing days of Hospital Hell.


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