The lonely plight of the family caregiver

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Where Is the Mango Princess?

By Cathy Crimmins

Alfred A. Knopf. 257 pp. $24

Always on Call

When Illness Turns Families Into Caregivers

Edited by Carol Levine

United Hospital Fund. 213 pp. $20

Reviewed by Suzanne Gordon

Here's an idea for a sequel to Survivor.

Sixteen people are sequestered in their own homes in a Philadelphia neighborhood. They include a 40-year-old woman taking care of a husband who suffered a traumatic brain injury after falling off a ladder; a 35-year-old man taking care of a wife paralyzed from the waist down in a car accident; a 55-year-old daughter caring for a mother dying a slow death from brain cancer; and a 59-year-old son taking care of a widowed father who has just had a major stroke.

Added to the mix is a 75-year-old woman with diabetes - and a heart condition and no children - caring for an 80-year-old husband with Alzheimer's, and an 85-year-old man taking care of a wife crippled with arthritis.

None of them gets any help from the medical system, private health insurance companies, or Medicare or Medicaid.

When the segment is over, the surviving family caregiver doesn't get - or want - a million bucks. He or she wants understanding from the system, plus free, unlimited home-care services from aides and registered nurses.

Not to worry, you'll never have to watch this ordeal on prime-time TV. Which is why books such as Cathy Crimmins' personal account and Carol Levine's edited collection are so important. They document the suffering this nation inflicts on its 25 million family caregivers.

Although American politicians and conservative moralists love to preach family values, family caregivers, instead of being rewarded, are consistently denied the education, assistance and respite they need.

Humor writer Cathy Crimmins discovered this when her husband, Alan Forman, an attorney at a large bank in Philadelphia, was smashed on the head by a motorboat on a lake in Canada in 1996. He spent five days in a coma in a Canadian hospital. There, with the exception of one bad-apple doctor, Forman received excellent care.

Crimmins' real problems began when her husband woke up with severe damage to the part of his brain that governs speech, memory, movement and personality, and had to be moved back to the United States.

Although this brave book was not written as a policy document, it should be required reading for anyone who thinks single-payer, universal health-care systems are inferior to ours and who still believes managed care actually works.

"I am now a convert to socialized medicine," Crimmins writes in her present-tense account. (The title Where Is the Mango Princess? is a meaningless question her husband uttered after his accident.) "The national health care system up here [in Canada] means that no one has hassled me about Alan's care; he gets what any brain injury patient in Canada is entitled to."

On the other hand, "as soon as we land [in the United States], the HMO vultures will be circling, looking for any way possible to turn down our benefits."

While Crimmins anguished about her husband's condition, insurance cost-cutters refused to provide quality air-ambulance service back to the States. They sent a poorly equipped, rinky-dink plane with no nurses on board, and the trip may have exacerbated his injury. Back in Philadelphia, after Forman's initial stay at the Hospital of the University of Pennsylvania, his HMO gave him only 21 days in a rehab hospital. Utilization reviewers, whose only priority was the bottom line, harassed social workers, nurses, doctors, rehab counselors.

Tying second in the callousness competition was her husband's employer. After a heroic struggle, Al Forman was able to return to work as a bank attorney. Rehab counselors and physicians advised his employers that Forman would be incapable of full-time work. In spite of this, Crimmins writes, "the pressure for Al to return full-time never lets up. I admit to becoming bitter: If Alan had never returned to work, the bank would have been forced to pay three-quarters of his salary in disability benefits for life."

Instead, in a particularly cynical move, the bank finally laid Forman off, "supposedly in an across-the-board reduction-in-force initiative."

Crimmins' book is not a political tract. Indeed, moments of great comic relief punctuate poignant descriptions of her trials as she tries to "balance being a caregiver and being a mom." She talks openly about her husband's "physical clumsiness," his inappropriateness (he can no longer even figure out what outfit to wear to a party or to work), and, worst of all, the terrible daily rages that are so often the result of brain trauma.

Although she is thrilled that her husband made it, she courageously admits that he is not the man she chose and married. "I miss Alan's eyes," Crimmins writes. "His old eyes. The ones that were connected to his original brain. They had a sparkle that's missing now. 'The eyes are the window of the soul,' goes the saying. Is Al's soul different? When I look into his post-TBI [traumatic brain injury] eyes, they seem dull, almost zombie-like. I keep a set of snapshots of the old Al in my office; each time I take them out, his former gaze captures me once again."

Always on Call is a perfect companion volume to Where Is the Mango Princess? It provides useful advice to anyone who ever has been or will be a family caregiver, and it adds insights and policy suggestions that should enrich the broader health-care debate in this country.

The book begins with seven personal essays written by family caregivers. The book's editor, Carol Levine, describes her 10-year saga of caring for a husband left with major personality changes after a car accident. That essay and another, cowritten with Connie Zuckerman and titled "The Trouble With Families," spotlight how members of the so-called helping professions often misunderstand and even demonize the families who bear the major burden of the care of the chronically ill.

In another heart-wrenching essay, Gladys Gonzalez-Ramos, a social work professor, narrates the struggle of her Cuban refugee father to care for a wife with Parkinson's disease.

The second half of the book is devoted to policy explorations. There is an excellent discussion of the economic losses American employers suffer because they refuse to help their employees fulfill their responsibilities to sick relatives. (Someone should send this book to the chief executive officer of Al Forman's bank.) Another essay catalogs the financial costs and economic contributions that families shoulder and provide when they care for a loved one. A complementary chapter explains how insurers and professional caregivers can provide family caregivers the support they so desperately need.

In "The Trouble With Families," Levine and Zuckerman succinctly present the problem and provide a blueprint for a solution. "A system that saves or prolongs lives only to cast patients and families into the abyss of fragmented chronic care and financial and emotional ruin, while at the same time criticizing them for being 'too emotional,' is unjust," they write. "Many families are willing to make enormous sacrifices, but martyrdom is not a good basis for health care policy or practice. When families are pushed beyond their limits, the patient's care is jeopardized, the caregiver's health is at risk, professionals are frustrated, and the health care system is burdened by greater costs."

And here's the million-dollar question: Will the survivor of this year's presidential race have the wit to pay attention to a family caregiving crisis that will only escalate as our population ages and our medical system produces more and more miracle "cures"?