December 24, 1999
The Health Unit is a partnership with
the Henry J. Kaiser Family Foundation.
CAROL CUMMINGS WARNER: You have to drink all the water you can. That's good.
SUSAN DENTZER: Just a few days before Thanksgiving, Carol Warner's 84- year-old mother, a stroke victim, landed back in the hospital with severe dehydration.
CAROL WARNER: That's the best thing you can do is drink water.
SUSAN DENTZER: For several days, Carol and her siblings thought their mother was near death. But then Augusta Cummings recovered.
CAROL WARNER: The minute you heard us dividing up the furniture the other day you woke up.
SUSAN DENTZER: Now Cummings has moved to a place where she's likely to live out the rest of her life, a Northern Virginia nursing home. Her daughter says she's improving.
CAROL WARNER: The main crisis issue we had to deal with was severe dehydration. Her skin was so dry that she was scratching at her arms and her legs herself. And now we're trying to get those wounds healed. And when she was in the hospital she was having little mini- seizures and would throw herself against the bed rails, which exacerbated that problem.
SUSAN DENTZER: Even with her mother getting excellent care from the home's professional staff, Carol Warner finds looking after her needs is an all-consuming job. In that, she's much like the other 25 million family caregivers in the United States.
CAROL WARNER: See, there are the fish, over there.
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SUSAN DENTZER: Sometimes those families are in effect extended ones, like Carol Warner's 13 longtime friends. All were graduates of the class of 1962 at Yorktown High School in Arlington, Virginia. Back then, they were all members of the same school service organization. After graduation, they stayed in close touch, making sure to get together at least once a year, says group member Joan Loftis.
JOAN BERKEY LOFTIS: We talked about other things: Getting married, having children. But then more recently we began to discuss our elderly parents and other relatives that we were supporting.
SUSAN DENTZER: As grandparents and then parents grew disabled or died, the 14 friends found themselves facing similar struggles. Linda Roger's mother had Alzheimer's. Brenda Vieregg's mother died a protracted death from cancer. More and more, they talked about the common problems they faced, including dealing with their own sense of loss, says group member Linda Veatch.
LINDA STALEY VEATCH: When we would get together and different people were talking about their parents so much. And someone-- and it may have been Linda-- at one point said, you know, this is what we talk about all the time now; maybe we ought to write a book about it.
SUSAN DENTZER: So they did, in numerous sessions around Linda Rogers's dining room table, and through a frenzy of e-mails sent back and forth across the country. "The 14 Friends' Guide to Eldercaring" was published earlier this year by Capitol Books.
CAROL WARNER: It amazes a lot of people. They say, "how in the world did 14 women agree on anything, much less a whole book?"
SUSAN DENTZER: But they did agree on fundamental issues like the need to preserve the dignity of elderly parents or to share the care-giving role. And in so doing, they waded into what is likely to become a major national issue in years to come, says Dr. Ezekiel Emanuel of the National Institutes of Health.
DR. EZEKIAL EMANUEL: As the baby boom generation ages, by 2030, one out of every five Americans is going to be over 65. And a significant portion of them are going to need assistance. Secondly, each family, as we know, the birth rate has declined, so each family has fewer children. So that responsibility for the elderly is going to fall on fewer people.
SUSAN DENTZER: And according to a major new survey of caregivers of the dying that Emanuel oversaw, the preponderance of them are likely to be women.
DR. EZEKIAL EMANUEL: Three quarters of the spouses who provided care were women, three quarters of the children; it was the daughter, not the son. If you look at siblings, it was the sister, not the brother. Even among friends it tended to be women, not men friends. SUSAN DENTZER: The 14 friends know these statistics because they live them. WOMAN: It isn't always fair.
WOMAN: It isn't fair.
WOMAN: No one said life is fair.
SUSAN DENTZER: The friends' intimate experience with care giving allowed them to settle quickly on topics for their book. One of the most important was the frustration that care giving brings. Linda Rogers learned that in dealing with her mother's gradual mental deterioration before she was diagnosed with Alzheimer's.
LINDA GILBERTSON ROGERS: There is no way you're going to avoid frustration. And you just have to find ways of dealing with it. We had... my mother would call me on the phone and say, "Linda, you've taken my keys." She would repeat this every ten seconds. The phone would ring again: There she would be telling me I had taken her keys.
SUSAN DENTZER: What's often required in situations like this, the friends agreed, was a technique that they called breaking the code.
ALICE BECKLEY MacDONALD: They say this, but what are they really saying? So everything that is a problem, let's take this and say, beneath it all what are they really saying?
SUSAN DENTZER: The phrase is shorthand for trying to understand the loved one's worries and then looking for simple solutions. And that's just what Linda Rogers and her siblings did.
LINDA GILBERTSON ROGERS: We just got all kinds of keys, and we put the keys all over the house. So when she would call, I would say, "go look in the drawer. They're right there." (Laughs) So she could find the keys and deal with that in an instant.
SUSAN DENTZER: Another subject the friends emphasized was the need for sharing the caring of a disabled or dying loved one. While her mother was dying of pancreatic cancer, Judy McLeod commuted for several hours each weekend to help her father and aunt provide care.
JUDY SHERWOOD McLEOD: Each family has to figure out a different scheme of how it can happen, because there is usually one person who seems like they get it all. And they have to be able to get help from the siblings. And that is not always easy. Some of the people haven't been natural caregivers, some people live longer distances. So I think what we want to say is this has to be something that is out on the table, that people talk about, how can we share this?
SUSAN DENTZER: The friends had other advice to pass along, as well. They stress the importance of finding practical ways to preserve a loved one's dignity, even as he or she struggles with embarrassing or debilitating loss of function.
BRENDA JONES VIEREGG: My mother-in-law had to deal with incontinence for a long time before she died, and I think actually, it is a problem that many, many older women have. And it is probably one of the biggest thieves of dignity. It is a reason that elderly women often refuse to visit their friends, to go out, to do anything social, because they are tremendously embarrassed by it. There are a lot of products on the market that can help, things like deodorizers in rooms, clothes that have Velcro fastenings instead of buttons. When you are going out, make sure that you will be sitting in a restaurant at a table that is very near a bathroom. Those kinds of things that you can think of ahead of time will really help protect your elder's dignity.
SUSAN DENTZER: In the book, you use the phrase, "guilt is a four-letter word."
LINDA STALEY VEATCH: What we mean by it being a four-letter word is that guilt is so nonproductive. I mean it can totally incapacitate you. It makes you not make the right decisions. And you have to really ask yourself, if I'm doing everything that I can, then you shouldn't let anyone else make you feel guilty about what you can't accomplish.
SUSAN DENTZER: And that means, the friends say, never say never-- including vows not ever to place a loved one in a nursing home. You need to stay flexible, because with eldercaring, the only constant is change.
CAROL CUMMINGS WARNER: I don't feel any guilt right now for putting my mother in this long-term care facility, even though every older person's fear in life-- my mother included, very specifically-- that they don't want to go to what is a nursing home because it's like the end of the line. And yet we are just calling it long-term care. And this is the best we can do so we are not going to feel guilty. We have to do this for her to get the right care, the proper care.
SUSAN DENTZER: Finally, the friends say, it's inevitable that eldercaring will unleash a flood of emotions. Brenda Vieregg recalls her mother's illness and death.
BRENDA JONES VIEREGG: I still get weepy when I think about it. My mother was my best friend, and it was a lesson to me that the reason eldercaring is so difficult is that, besides the physical work which we all can do when you're caring for somebody, it involves the longest relationship of our whole life. And so you bring all of the emotions of that relationship into the caring process.
SUSAN DENTZER: These messages have struck a chord with thousands of people who've bought and read the 14 friends' book.
WOMAN: You need one. in the house.
SPOKESPERSON: I need one.
WOMAN: Yeah, you sure do.
WOMAN: I should get it. Thank you.
WOMAN: Do all 14 sign it?
SUSAN DENTZER: Although they've become caregiving experts, many of the 14 friends keep the book close at hand to reread when the going gets rough. Carol Warner did that during her mother's recent hospitalization, even as her friends rallied around to provide support. Many of them recalled Mrs. Cummings fondly from their younger days.
WOMAN: If there is such a thing as a Virginia lady, it is Mrs. Cummings.
WOMAN: I think so, too.
LINDA GILBERTSON ROGERS: One of the really fun things that I remember about Mrs. Cummings, I was at their house as usual, and she was downstairs. This was the ultimate lady. She was changing the filter in the furnace and she looked at me and she said, "Linda, never learn how to do this." (Laughter) "Once you learn how, it's your job."
CAROL WARNER: And she probably had on a silk blouse.
SUSAN DENTZER: How do you feel now about Carol going through this with her mother?
WOMAN: Proud of her. Very proud.
WOMAN: It's hard. (Laughter)
SUSAN DENTZER: Why proud?
WOMAN: Because she is doing it with such love.
BRENDA JONES VIEREGG: It makes me proud to have carol for a friend and the rest, the other 13 of this group. It is the hardest thing that I've ever done, and I think everybody in this group feels that way.
CAROL CUMMINGS WARNER: Mother, you want to put this under the tree? We'll put it right here. We'll put one here.
SUSAN DENTZER: The "14 Friends' Guide to Eldercaring" will be published in paperback next spring.
CAROL CUMMINGS WARNER: Do you? All right.
Editor's Note: Since the airing of this piece, Augusta Cummings passed away at the nursing home in Northern Virginia.