When caregivers have to choose which care is best

By Mike Foley
The Greenville (S.C.) News

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Often, the decision must be made in a flash, usually in the muddled aftermath of a near disaster. But caregivers also may be forced to find an answer after days and weeks and months of exhausting toil when they accept that, finally, they need help.

Most move-ins to assisted-living or nursing homes are crisis driven, says Shirley Paulk, a registered nurse and vice president of Arbor Co., which owns numerous assisted-living centers.

"Usually the caregiver has been thinking about it for a long time," Paulk says, "and then something happens. It forces them to make a decision now."

On the Web • U.S. Administration on Aging Eldercare Locator: www.eldercare.gov or 1-800-677-1116 • Aging Solutions: www.aging-parents-and-elder-care.com • AARP's information on proving care at home: www.aarp.org/confacts/caregive/parentshome.html

Caregivers of the elderly, whether they are children, grandchildren, a spouse or even a niece or nephew, have distinct fears about giving up some or all of the care of a loved one.

"There's the fear that you can't meet the obligations you've made," Paulk says. "You also fear that you'll fall out of grace with the loved one.

"And our greatest fear is not knowing what to do, and having to make a choice."

Don't wait for a crisis

Caregivers often go to great lengths to try and care for their loved one.

"In counseling families, it's been our experience that many families wait until they're near exhaustion before they seek assistance," says Lenora Rosenberger, manager of professional services for St. Francis Homecare, a division of Bon Secours St. Francis Health System. "Everyone has a phobia of nursing homes, and I think a lot of times adult children make promises to their parents like, 'I'll never put you in a nursing home.'

"And with that in mind, they finally get to a point where it's just unsafe for them to care for a family member and they have to."

That type of broken promise, and the anguish that goes with it, doesn't have to occur, Rosenberger says.

"We try to encourage people to talk about this way in advance and explore some of the options," she says. "You know, if I get to the place where I can't care for myself, is it an option for me to move in with my children? If not, what are my options?

"Planning ahead is much better than planning in a crisis."

When people are struggling about what to do with parents who need more care than the family can provide, a grieving process occurs, Rosenberger says.

"The same steps are involved," she says. "You have the disbelief. You have denial sometimes. You have acceptance. And they vacillate back and forth between those things."

When, where to seek help

Before a precipitous event such as a stroke or a terminal illness occurs, caregivers can attune themselves to know when to seek help, says Dr. Bill Logan, director of geriatric care services at the Greenville (S.C.) Hospital System.

"You'll hear this from someone who's taking care of an older parent, 'Momma ain't right,' " Logan says. "And Momma probably isn't. Between the ages of 30 and 80, you lose 30 percent of your brain mass. They say it's the part you don't use, but I'm not so sure about that."

The elderly will have functional decline; that is, they'll gradually lose the ability to do daily tasks.

And they can succumb to dementia or delirium, or other mental problems such as Alzheimer's disease. Some of those are treatable, and patients can recover after hospital stays, therapy and other rehabilitation.

Other times it's permanent, and the decline can neither be reversed nor halted. That's when caregivers have to decide whether they can handle the care themselves, or whether they need help.

To make the best decision on what to do, Rosenberger says a primary-care physician is the best resource.

"What you need to do is talk to them," she says. "You say, 'Here's what's going on. I'm having difficulty meeting his needs. Dad is not as independent as I think he needs to be, or he could be. Is there any service we could get for him in the home to assist?' "

Then the physician will call an agency so an evaluation can be made, Rosenberger says.

Long-distance care

"But in our mobile society, the children have moved away from mom and dad. Trying to make arrangements and take care of them long-distance, they may not be able to manage."

There are also financial considerations. A private sitter who can cook, clean house and help with daily living is preferable if the family can afford it, Rosenberger says.

If the situation requires assisted living outside the home, where medical care is available when needed, or a nursing home where 24-hour care is available, that's yet another hurdle to clear for everyone involved.

The best thing a family can do is learn all they can and make a clear choice. Many families struggle to provide care for a loved one from six months on up to years before they decide to seek help. When they do, Paulk says, "You're not just helping yourself," she says. "You're helping your loved family member."

Copyright © 2003 The Seattle Times Company