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The 'Care' Juggernaut

By Mary Johnson


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"Caregiving" is a growth industry, if you can call something a "growth industry" whose workforce remains mostly unpaid.

People in the U.S. get 21 billion hours of assistance annually, 31 hours per week on average, says the Disability Statistics Center.

Despite the perception that it's an "elder issue," fewer than half of the 13.2 million of us who get help with things like bathing, dressing and heavy housework are over 65 years old, says DSC director Mitchell LaPlante.

The label used today for the people who do your bathing, grooming and dressing is not the independent living movement's term, "personal care assistant," but "caregiver."

There is an enormous pressure on the relationship when the personal assistant is also the spouse, the child, the parent. It shifts the relationship; distorts the relationship. More.

'Caregiver' is a term cooked up to make family members feel good about getting stuck holding the bag," says longtime California disability activist Patrick William Connally, head of the Disability Rights Enforcement, Education, Services group. Like many disability activists, Connally is wary of the concept.

"'Giving' is something done freely," he says, "and so has no accountability." To the disabled person, he means.

Attention focuses on "caregivers," not the crips who need services.With "caregivers" shaping the debate, the independent living movement approach to personal attendant services is nowhere to be found in the public discussion.

Susan Geffen Mintz started the National Family Caregivers Association out of a "sense of anger and isolation," she told Halftheplanet.com recently. "Our value to the country as a whole, the sheer dollar value of what we provide, is about $196 billion a year." Mintz said that she had become "really angry at how completely ignored I, as a caregiver, was by the healthcare system."

A panoply of books, organizations and websites provide information and support to the caregiver. Publishing giants like Random House, Simon & Schuster, Times Books, Little, Brown and Co. produce books with titles like Caregiver's Handbook: A Complete Guide to Home Health Care; Preventing Caregiver Burnout; Kind Words for Caring People: Daily Affirmations for Caregivers and Rosalynn Carter's Helping Yourself Help Others: A Book for Caregivers. The online bookstore Amazon.com lists over 250 titles on "caregiving." Beth Witrogen McLeod's Caregiving: The Spiritual Journey of Love, Loss, and Renewal is in the top 5 percent of books sold by the online bookstore.

There's Caring magazine and Today's Caregiver magazine. Besides the National Family Caregiver Association, there's the Family Caregiver Alliance, the Caregiver Assistance Network, the Caregiver Network, The Care Guide at http://www.careguide.net. There's caregiver.com; caregiving.com; caregiving.org, caregivers.com. Some include links to nursing homes and assisted living facilities. None that we could find included any links to organizations of disabled people, or to independent living centers or other independent living movement resources.

Medical professionals "either don't know about us," says Diane Coleman, director of Progress Center, an independent living center in Illinois, "or if they do they don't respect us enough to refer their clients to us," she says, consciously choosing a word other than "patient."

The oldest of the groups focusing on the "caregiver" is the Well Spouse foundation, started in the 1970s by Maggie Strong, following the success of her book, Mainstay: For the Well Spouse of the Chronically Ill. The Foundation's website (www.wellspouse.org) contains stories from members:

"Well, it's been 12 years of emptying catheter bags and finding that the easiest way to clean up the mess after a BM at night is to not have anything on her below the waist as I bed her down."

"I cannot leave Chuck alone as he requires supervision. I feel like I have two children.

"The man I married, made plans with, laughed with, loved with, made a baby with is gone."


When I broke my neck," says Marca Bristo, head of the National Council on Disability, " and I was single at the time -- I remember people in rehab, really enlightened rehab professionals, talking about the danger of placing one's intimate responsibilities on a family member, especially your significant other."


"It's bad to have a family member working for you," says Woody Osburn, head of the alliance of Ohio's 9 independent living centers known as the Statewide Independent Living Council. "Paternalism rears its ugly head. They see you, the person who has acquired the disability, as no longer able to direct your own care; no longer able to live a normal life."

But there's usually little choice. It costs money to hire outside workers.

The "medical model," says Osburn, is now permeating the slow move toward what in jargon-laden terms is now being called "home and community-based services." That's about nothing more than money, said Osburn and everyone else we talked to. Medicalizing a service turns it into something that those running a business providing the service can get a lot of money for. It doesn't take a rocket scientist to figure that out.

"The bottom line is always money," says Osburn.

It's not a medical position. They just can't seem to get that; that it's not medical," says Osburn. "It's a relationship with someone who comes into your home and takes care of your most personal needs, but it's not medical.

"And you don't need them to come in with a white uniform and a nametag. When I go to a meeting, I don't want somebody trailing a long with a damned white uniform and a nametag," says Osburn. "I've actually had agencies send me someone with a uniform on. I send 'em back."

Even when the money to hire a worker isn't a problem, other things are. It's sometimes hard to tell who has the problem with it, but "caregivers" often reject outside assistance, either saying they don't want someone else in the house, or saying the disabled person opposes it. A number of those we spoke to talked of a scene in Bill Moyers' recent series on dying, "On Our Own Terms," in which a woman taking care of her husband with ALS intimates that he doesn't want strangers coming in. Coleman says, "I got the impression that he was willing for someone to come in; but the wife says 'no; it wouldn't be acceptable for someone else to wipe his butt' -- and it looks like she is going to be the martyr and he is going to have to die an earlier than natural death.

"But the dynamic of that relationship was seen by the Moyers producers as, I guess, 'healthy under the circumstance.' Those of us in the movement see it as a very unhealthy relationship."

Activists recall someone asking the hospice nurse at the trial at which Jack Kevorkian was found guilty of murdering Thomas Youk whether Youk was getting a home service worker as part of his hospice benefits. The nurse reportedly said that "the family had refused it for privacy reasons."

Those "assisting with a dying patient's last days must be sensitive to the fact that caregivers may not be used to outside help and may be reluctant to hand over the care that they have been providing," Mintz says in an online guest commentary on the Moyers site.

Mintz has called "caregivers" "part of the healthcare team." And although she refers to her husband, Steven Mintz, in her interviews and we learn he has had multiple sclerosis for decades, he seems to remain a nonentity in her campaign -- never a quote from him, never a discussion of their relationship other than that she's his "caregiver." It's hard to tell if this is paternalism or not. But the silence suggests that it is the "caretaker" rather than the disabled person running the show.

Bristo says that the "excessive public attention paid to the 'poor family member who is burdened by this disabled person,' generates a great deal of sympathy toward those people.

"And the disabled person is lost in that equation."

Chris McGonigle, in her 1999 book, Surviving your Spouse's Chronic Illness, published by Henry Holt, reports a man saying, "I diaper her, I bathe her, I care for her. And then I'm supposed to switch into seeing her as a sexual being? It's incest. She's my child now."

"'Caregiving'" said Osburn, "really makes families dysfunctional."

McGonigle told Wemedia.com's Kevin O'Leary that her own husband, who'd had multiple sclerosis, had given her permission to have an affair. "That was his gift to me."

"There is an enormous pressure on the relationship when the personal assistant is also the spouse, the child, the parent," says Bristo. It "shifts the relationship; distorts the relationship."

People see caregivers as almost angelic," she says. "But who knows what goes on behind closed doors?"


"You're sucking the life out of me like a vampire," Manhattan editor George DeLury wrote in his diary not long before killing his partner, Myrna Loeb of Manhattan, who had multiple sclerosis. DeLury was hailed by the right-to-die movement as a "compassionate hero" and served four months; a year later his diary was published and reviewed favorably in The New York Times Book Review.

"The 'caregiver' gets to take on the role of the martyr and victim, and the person with the disability becomes the perpetrator," says Coleman, who also heads Not Dead Yet.

"There are circumstances in which we have a duty to die," wrote bioethicist John Hardwig in his cover article for the Hastings Center report, a leading bioethics journal. "As modern medicine continues to save more of us from acute illnesses, it also delivers more of us over to chronic illnesses, allowing us to survive far longer than we can take care of ourselves."

The piece was published in the spring of 1997, which, as Coleman reminds us, was when the U. S. Supreme Court was considering two cases on assisted suicide. Although the Court ruled against it, the movement known as the "right to die" continues to gain momentum.

Seventy percent of those who sought Kevorkian's "assistance" in dying, says Coleman, were not people with terminal conditions but with disabilities. Many felt they were burdens on their families and yet did not want to go into a nursing home.

Hardwig's concern that we are living longer than we can "take care of ourselves" is what leads Not Dead Yet to the conclusion that one of the bigger threats to us are our unpaid family "caregivers" who would do us in. And most disabled people know it at some deep level, although few people acknowledge it openly even today,

I wanted to keep on living and I knew my husband was getting tired of waiting for me to die," says Susan Golden, now divorced. "I started making advance directives very quickly when I saw what was happening."

What was happening, said Golden, was that her husband was "getting rougher and rougher" with assisting her with personal care. It took her nearly a decade, though, she said, to admit she was being abused. And she thinks that's not unusual because "you so slowly move into the dynamic. Your spouse, or your family, tells you 'we're doing this for you because we love you' and there's all kinds of anger that gets hidden.

"It's very subtle. How do you break out of something when the person doing it says, 'I love you?'"

A 1997 national study of women with physical disabilities conducted by the Center for Research on Women with Disabilities found that 25 of the 31 women interviewed in the first phase of the study experienced abuse.

Golden believes that people with what she calls "adult onset degenerative disabilities" -- like multiple sclerosis, ALS or Friederich's ataxia, which she has -- are the most vulnerable, because they've never encountered the concept of independent living and learned the strategies that are now taught to people with spinal cord injuries in rehabilitation. And those we interviewed said that support groups for people with these disabilities generally focused on "symptoms and medical treatment."

"What you see are diagnostic support groups," says Coleman, wondering why some professionals "seem to think it's a good idea to have a significant number of people who don't have a clue talking to each other."


Disabled people are still perceived as somebody's burden," says Bristo. "That's understandable on some level," she says; people are under strain when there's no assistance available." The solution, she says, involves "opening up choices" -- having the will to fund attendant services out of public money.

"Until we really have some sort of a national program of personal assistance services that is supported in a manner that really gives people choices," says Bristo, "we are never going to break the possibility of people going into nursing homes, because that's where the money is; that's where the services are going to get paid for.

"And we're never going to intervene in that 'I do it myself because I don't want my loved one to go into an institution, but it's too hard for me' conundrum."

"I know I would find it hard to have to depend on a workforce of 'saints,'" says Connally.

Hemlock Society Founder Derek Humphry, in his 1998 book, Freedom to Die -- People, Politics and the Right to Die Movement, writes, "in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice."

The cost savings also occurs in emotional terms. McGonigle, in her book, talks about a woman "pushing her wheelchair-using spouse by the top of the stairs thinking, 'I can end all this here,'" writes Wemedia.com's O'Leary. Family "caregivers" are helped when the disabled family member, the "burden," dies.

When ADAPT says to the media, 'What do you want? Nursing homes or personal assistance?' we're asking the public to identify with people with disabilities," says Coleman. "The public just isn't reacting to that message."

People with disabilities -- disability activists, independent living activists -- "are the front edge of the coming wave," says Coleman. "We're the advance guard. We know what's coming; what's going on; we have a way of being in the world. We've basically figured it out, how to be in the world with a disability. And the independent living movement says, 'let us share our expertise with everybody else' -- but nobody wants it.

"My guess is that they think we couldn't possibly have the answers because we are, after all, disabled -- and 'disabled' means 'incompetent.'

"Almost everybody who's been successful in living with disability is going to point out the attitude issues are the dominant issues. People feel as though their lives are transformed when they find a new identity as part of a movement -- a community," says Coleman. But far too few ever find that new identity, and nobody, it seems, is leading them to it.

Golden learned of independent living only because, when she and her husband were newcomers to Toledo, she chanced to go to a Welcome Wagon presentation for new residents that happened to be held at the local Easter Seals office, where she happened to learn that there was something called the Abilities Center of Toledo.

Coleman recounts a recent talk she had given to a group of medical students. "After the presentation, one of them came up to me and said he'd just now figured out that there was this other idea out there" -- by which he meant the independent living philosophy that it's OK to be disabled, that not all disabled people wanted to be cured. "And this was in 1998," she adds, decades after independent living had started in Berkeley and spread across the nation; years after crips had taken up the idea of disability pride.

Coleman thinks the independent living movement "is functioning within tremendous constraints," mostly financial. "We too often find ourselves talking only to each other."

George DeLury, in an online message in 1997, lashed out at Not Dead Yet and the disability rights movement: "If the energy put into [fighting the 'right to die'] were put into development and advocacy of specific and broad protections of the disabled, I suspect their general lot would see great improvement." Like much of society, DeLury, a New York book editor, seemed unaware of the decades of activism to get public funds shifted to in-home support which would be controlled by the person needing the services.

Virtually no one in the media seems to have ever heard of the Medicaid Community Attendant Services and Supports Act now in Congress, a bill that would change the Medicaid system to require states to offer in-home services as an "entitlement." Nursing homes are now the only such "entitlement."

Yet, as Golden points out, for many people, Medicaid, the program "for the poor," isn't going to help them anyway. Private insurance and Medicare are where changes need to occur; and despite what seems to be a lot of effort by the caregiver groups, nothing seems to be moving Congress on that front, either.


What does it feel like to not ask for something you need because you don't want to burden your family, so you go without?" asks Bristo. "That, in the disability experience, is the real internalization of oppression. You set aside what you want, rather than burden someone.

"Yet if we could fast forward and imagine this nation being, like some European countries where having personal assistance is a given, then people wouldn't be faced with that choice of the nursing home or nothing. It would relieve an enormous amount of stress on families, and over time, it would begin to alter the public perception toward significantly disabled people and the people who relate to them."

We're not there yet.

For National Family Caregiving month, the National Family Caregivers Association urges members to write their local newspapers about their problems as caregivers. It even offers sample stories to use as models for telling their own stories in a letter. One sample reads like this:

"My name is Betty. I am 58 years old. I am the sole caregiver to my husband, John, 64 years old, who was diagnosed with primary-progressive multiple sclerosis in 1985, three months following his retirement. He is paralyzed from the upper chest downwards -- and is losing ground every day.

"By necessity I have learned to use power tools, do plumbing chores, get urine out of the carpet, recognize possible pressure sores and dress a 6'5", 240-pound dead weight. All the errands, car servicing and driving are my responsibility.

"I do all the cooking, shopping, cleaning and laundry and have learned to give haircuts because the outside world really isn't wheelchair accessible.

"Our only socializing is with other disabled couples because wheelchairs, trembling, infirmities and system failures make former friends and even family uncomfortable and eventually distant. I miss the hugs, the snuggling, the hand holding, the love making, the dancing, and the strong shoulder to lean on. Depression, loneliness, hopelessness, and fear. . . . are my constant companions."

The concepts that formed the bedrock beliefs of those first independent living gurus, people like the first independent living center's Ed Roberts, concepts that have infused the sensibilities of the independent movement for decades, have never reached people like "Betty" -- or the people propelling the "caregiver" movement.

What will it take to make that happen?

Mary Johnson is editor of Ragged Edge magazine.


Nursing home fear.

"I cannot talk to Carol about the nursing home; she just blows up. The doctors have advised me not to tell her until she arrives at the nursing home. I guess I should plan on spending a great deal of time with her in the nursing home if and when it happens. . . .

"Our children try to help a little with their encouragement and support in an emotional way. I know they will be glad when Carol is finally admitted. Perhaps because they don't want the responsibility of placing her if something happens to me.

Rev. Robert L. Webb, Cedarville, IL, in a Well Spouse Foundation newsletter, reprinted on their website at http://www.wellspouse.org/article6.html.

Not an 'elder issue'.

A statistic often recited by those in the "caregiving industry" is that nearly one in four U.S. households contains someone caring for a relative or friend who is over 50. However, the Disability Statistics Center points out that fewer than half of the 13.2 million adults who get help with things like bathing, dressing, heavy housework are over 65 years old.

Americans need 21 billion hours of assistance yearly, according to National Center for Health Statistics data released by the DSC last fall. Very little of it is paid for with public funds. Medicaid paid most of the cost for only 127,000 people and some of the cost of only 232,000 people in the U.S.

  • 14.8 million adults in the U.S need help with things like bathing, dressing, heavy housework (called "activities of daily living" -- ADLs, and "instrumental activities of daily living" -- IADLs). Over 13 million (13.2) do receive some help with these things, but mostly in the form of informal, unpaid services, primarily from a family member.

  • Most assistance is unpaid -- 88.4 percent -- averaging 31 hours a week.

  • Only 14 percent of people ages 18-64 get any paid assistance. The average number of hours of paid assistance these people get is 17 hours.

  • People ages 18-64 who need assistance get less paid assistance than do people age 65 and over.

  • 6.2 million people age 65+ need assistance; the hours of assistance they need averages 71 hours of assistance a week.

  • Slightly over a third (37.5%) of these people get paid assistance. The average number of hours of paid assistance these people get is 18 hours.
  • Data are from the 1994-95 National Health Interview Survey conducted by the National Center for Health Statistics. The Disability Statistics Center is a National Institute on Disability and Rehabilitation Research Center.

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