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Programs give caregivers a break

Denise Egebrecht, left, and her daughter, Jaqueline, share their home with Egebrecht’s elderly mother, Eleanor Schwartz, who has Alzheimer’s disease and has trouble moving around. A $1,000 respite care grant provided temporary relief.

New York Times

Denise Egebrecht, left, and her daughter, Jaqueline, share their home with Egebrecht’s elderly mother, Eleanor Schwartz, who has Alzheimer’s disease and has trouble moving around. A $1,000 respite care grant provided temporary relief.

Denise Egebrecht needed a break.

It had been three years since her 86-year-old mother, Eleanor Schwartz, moved in with her and her husband in their home in Johnsburg, Ill. Her mother has Alzheimer's disease and has trouble moving around, so Egebrecht helps her with her shower each day, makes sure she's fed and takes her on small excursions to the mall in a portable wheelchair. The routine includes occasionally reminding her mother of what day it is and where she's living.

Egebrecht does all this while also raising her 8-year-old daughter, Jaqueline, and working full time.

"My mom took care of me all of my life," says Egebrecht. "Of course I'm going to take care of her now. She'll live here as long as she's able."

But money was an issue. For a time, Egebrecht was out of work, having lost her job last year. Although her husband was still employed, without her salary she found it increasingly difficult to pay $180 a week for the adult day care center Mrs. Schwartz attends regularly.

Then, through the Family Alliance office in her town, Egebrecht heard about a $1,000 "respite care" grant sponsored by the Alzheimer's Foundation of America.

Intended to give primary caregivers the break they so often need, the grant money must be used to pay for temporary substitute care, said Carol Steinberg, executive vice president of the Alzheimer's Foundation. Egebrecht applied for and received the grant, which meant her mother could continue to go to the adult day care center and Egebrecht had time to find another job, which she did.

Egebrecht is one of the growing numbers of Americans facing the financial squeeze that can come from caring for elderly parents. About 30 percent of adult children in the United States contribute financially to their parents' care, according to the Pew Research Center. On average they pay $2,400 a year for everything from uncovered medical expenses to making sure the refrigerator is stocked each week. The money often goes to parents who diligently saved all their lives, but in the face of longer life spans and chronic illness, the savings just isn't enough.

With all of the overwhelming emotional and medical aspects of caring for elderly parents, it's natural to ignore the consequences of spending large amounts of money on them. But often adult children end up ignoring their own savings and retirement accounts or, worse, go into debt because they're taking care of their parents, says Tim Casserly, a lawyer in Albany, N.Y., who specializes in elderly care issues.

And if you jeopardize your own finances now, you risk putting your children in the same tough spot down the line.

One way out of this bind? Take full advantage of the hundreds of government and nonprofit programs and services geared to the elderly. "There's lots of help out there, but also lots of reasons why families don't use it," Casserly said.

Some people may think their parents have too much money to qualify, but many programs are available to elderly people with incomes exceeding $100,000. Or the parents may be too proud to accept help.

What's more, these services can be difficult and time-consuming to find. And it can be a challenge to deal with the paperwork and red tape, especially when you're already overwhelmed by the daily demands of taking care of an aging parent.

Here is expert advice and several resources to make the search for help easier.

The first step: Have the hard talk.

"So often I see clients who are in the middle of this situation but know very little about their parents' finances," said Henni Fisher, a Brooklyn, N.Y., clinical social worker. Your parents may be unwilling or unable to give details. Or you may be uncomfortable bringing up the subject.

Reassure your parents that you're not trying to take control away from them; you're simply trying to make sure that they have everything they need and that you understand everything they want.

During this conversation or series of conversations, ask about one of the largest expenses for older people: assisted living or nursing home facilities. Do your parents have long-term care insurance to help with this monumental expense? If not, should they get it?

The documents: Make sure your parents have the proper paperwork in place.

In an emergency, you'll need legal authority to act on their behalf. Make sure your parents have signed a durable power of attorney authorizing you or some other trustworthy person to take over financial decisions — including signing checks and paying bills — on their behalf.

Keep in mind these other necessary documents: A durable power of attorney for health care (also called a health care proxy) authorizing someone to make medical decisions when your parents cannot; and a living will outlining your parent's wishes if life support is needed.

These forms may be available at a local senior center. Or a lawyer who specializes in elderly issues can answer questions and help put this paperwork in place. To find one near you, go to the National Academy of Elder Law Attorneys (

Hiring an outsider: Many families find relief when they hire a geriatric care manager. These consultants, who can cost from $50 to $200 an hour, will assess your parents' situation, offer counseling and help you find the services you need.

Programs give caregivers a break 10/28/09 [Last modified: Wednesday, October 28, 2009 4:30am]
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