Hi Sy,

Thanks for that informative book review.
It was very well written.
I had hoped that Senate Bill to help
Care Givers would get passed this Session,
but I have been unable to find that it did.

just me,
Marjorie



This appeared in this the Book Review section of this Sunday's Philadelphia
Inquirer. The lonely plight of the family caregiver By Suzanne Gordon 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"? Suzanne Gordon is the author
of "Life Support: Three Nurses on the Front Lines," and coauthor of "From
Silence to Voice: What Nurses Know and Must Communicate to the Public."