Caring for elderly takes toll on daughters

June 06, 2000|By Susan Reimer

IF YOU are helping to care for an elderly friend or relative, take a look in the mirror. This is what you look like.

You are about 46 years old. You are married. You work, but you also have children of your own at home.

And you are a woman.

The care of the elderly in this country overwhelmingly falls to you. But unlike childcare, which was a five-year problem that tended to improve with time, the care of the elderly is a 20-year problem that becomes more difficult every year.

This responsibility may have arrived suddenly: a phone call with news that Mom or Dad has had a stroke or a heart attack or a fall. But often you have been a caregiver for years before you realized it.

Sunday dinner at Mom's evolved until it is you who are taking meals, you who are cleaning her house, bringing her laundry home with you, arranging for repairs, driving to doctors' appointments.

You don't think of this as a job. This is your mother, after all. (The elderly are overwhelmingly women.) So it does not occur to you that you might need time off, services, money, advice. You would never think of hiring help, and you don't ask for it either.

The result is that you ignore your own well-being. You are exhausted and worried, and it takes a physical toll that you ignore. Your relationship with your siblings suffers. Your immediate family endures the fallout of your fatigue and anxiety. Your work suffers, and so does your career.

You thought Medicare or Medicaid or some other government program would take care of your mother at the end of her life, and you find to your astonishment that this is not so. So you pay. This is the first generation to spend more on medical expenses for their parents than for their kids - about $170 a month, experts say. That's an average 401k or IRA contribution.

But you are determined to do whatever must be done to keep your mother out of a nursing home, even if it kills you. Literally. Studies of the long-term health of caregivers falter because so many of them die soon after the death of the loved one.

There was a wealth of shared knowledge to call upon when you were raising your children - books, pamphlets, magazines, television shows, advice columns in the newspaper, radio call-in shows. But there is none of that to help you learn to care for your mother. You need training - how to move her, bathe her, care for her skin. But you can't possibly get out for classes on this stuff.

And the complexity of her medical condition would confound a team of doctors. Indeed, it has.

There is not one thing wrong with your mother. There are many things. And none of her specialists talks to another, so you are left to sort out the medications and the side effects and the conflicting instructions. You can't tell what is the disease, what is dementia and what is depression, but you wouldn't know what to do if you could.

You want to know what the future holds, and no one seems willing to be honest with you. What is the course of this disease? How long does it last? How does it end? What decisions must I be ready to make?

You don't have a tax-free account to help you pay for this, the way you did for childcare.

There is no one to help you patch together Medicare benefits and insurance benefits, and the paperwork is overwhelming.

There are no lawyers to tell your mother of her rights or to defend her against those who prey on the elderly.

There is no one to help you dispose of the things in her home or to help you furnish her new living space.

God help you if you live even a couple of hundred miles away.

But you don't see this as a burden, a job or even a duty. You see it as an extension of your relationship with your mother.

However, the demands of her failing health are so overwhelming that you are missing out on the richness of this time with her.

Lt. Gov. Kathleen Kennedy Townsend convened a summit at the University of Maryland last week, not to number the troubles that beset those who care for the elderly, but to search for solutions.

The bottom line is that our rapidly aging population is going to put insupportable demands on this country, and families are going to be asked to provide 70 percent to 80 percent of the care, as they are now.

But family caregivers must have help from their community, from their employers and from their local, state and federal governments. They need information, services and some financial breaks. They need the support and flexibility of their employers, the kind new parents have come to expect. They need another pair of hands or two or three. They need understanding and an occasional day away.

Townsend's conference began the work of identifying what is needed. Legislation now before Congress, the Long-Term Care and Retirement Security Act of 2000, would address some of those needs, especially in the area of tax relief. But it is in danger of falling by the wayside as Congress rushes toward adjournment.

This is a great and generous country, Townsend said during the summit. We can do this for our elders. But we shouldn't have to - we can't - do it by ourselves.

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