An Oddball Film.

DATE September 29, 2000 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Home health caregiver Carole Levine discusses the care
she must provide to her husband, who was injured in an automobile
accident 10 years ago and is now a quadriplegic
BARBARA BOGAEV, host:

This is FRESH AIR. I'm Barbara Bogaev, in for Terry Gross.

Carole Levine is one of many home health caregivers who has changed her
life to care for a sick loved one. Her husband was totally incapacitated by
an automobile accident 10 years ago. She's faced countless frustrations with
the medical bureaucracy while dealing with her own constant exhaustion. But
Levine is also a professional in the fields of medical ethics and health
policy. So when she looks at her problems with home health care, she sees how
it's symptomatic of problems with the larger health care system and ask what
needs to be changed. And that's what she is devoting herself professionally
to now.

Levine directs the Families and Health Care Project of the United Hospital
Fund, which is creating model programs designed to help family caregivers.
She's one of the speakers next week at the White House Forum on Technologies
for Successful Aging. Earlier in her career, she was awarded a MacArthur
Fellowship for her work in AIDS policy and ethics.

Terry spoke with Carole Levine last winter.

TERRY GROSS: You've said that the old-fashioned sense of family
caregiving--chicken soup and fluffing pillows--really doesn't apply to what's
happening today. What kind of medical care is the family caregiver expected
to provide today?

Ms. CAROLE LEVINE (Director, Families and Health Care Project, United Hospital
Fund): Well, many family caregivers are expected to provide really what we
would ordinarily consider skilled nursing care--monitoring feeding tubes,
mechanical ventilators, changing dressings, doing chemotherapy, as well as the
sorts of skills that require technical knowledge, like turning a paralyzed
patient in bed. Those are things that were formerly done by professionals,
but are now being done by family members without much training.

GROSS: You've written, `I feel abandoned by a health care system that commits
resources and rewards to rescuing the injured and ill, but then consigns such
patients and their families to the black hole of chronic custodial care.'

Ms. LEVINE: Right.

GROSS: Now this is what happened to you.

Ms. LEVINE: This is exactly what happened to me. My husband and I were in an
automobile accident in January, 1990, so it's almost 10 years. And in the
beginning, the things that American medicine does so well--trauma medicines,
saving lives, really miraculous sorts of things--all came into play. But then
when it became apparent that he was never going to recover completely, that
they weren't going to be able to restore him to a full-functioning individual,
then everybody drifted away. And the custodial care is a term that ensures,
and others use to indicate a kind of: `We don't want to deal with you
anymore. You're just custodial. We can't help you. You go and take care of
it.'

And I felt because of that tremendous interest in the beginning and that
terrific amount of energy that went into saving his life, that people would be
there to help me deal with his state when he was released from rehab. But
essentially, I was told, you know, `So long, you're on your own.' And that
meant from everybody. So I truly felt abandoned. And I'm not the only one.
Many people feel this sense of abandonment when doctors and the medical system
can't cure and people are left with trying to live not--to live with a
long-term chronic illness or disability.

GROSS: What kind of shape was your husband left in physically, mentally,
emotionally?

Ms. LEVINE: Well, he's essentially quadriplegic. He has had some significant
brain injury from the trauma. He was in a coma for five months, and at his
age--he was then 62--people don't come out of comas the way you see in the
movies and wake up and say, `Oh, what happened to me?' It was a very, very
chaotic, disturbed experience, and he was emotionally truly unable to
understand what happened and cope with this new situation. He had a lot of
physical problems, and a lot of mental problems as a result. Right now, he's
quite stable at home. And he's certainly not the same person he was before
the accident, but he's--I've managed to get him to a state where he needs
24-hour care, but he's not in those terrible emotional upheavals.

GROSS: But when you got him home and started to care for him, he was in
emotional upheaval.

Ms. LEVINE: Oh, he was screaming all night. He wouldn't let the aides come
near him. It was horrible. It was just horrible. I thought I would never
survive the first two months. And there were many, many undiagnosed problems.
He had a very severe sleep apnea. You know, he would fall asleep and stop
breathing, and then he'd wake up screaming. Well, that was attributed to sort
of willful bad behavior on his part when he was in the facility, and it took a
long time to diagnose and treat. And that's much more under control.

But I really was left with no one to kind of help me through that whole
process. In fact, I did have--called on a colleague who saw me and said,
`Boy, you look awful.' And I said, `Yeah, well, come to my house and you'll
see why I look awful.' And she treats cancer patients, and she said, `I can
send you someone who can try to figure out what's happening in your house.'
And she sent a psychiatrist and a nurse, one visit only. They said, `Oh, we
can figure out something here. Your husband needs different medications, and
we need a different kind of environment.' And they put me on the right road
to straightening it out. Without them, I don't know where I would be today,
or where he would be.

But that was because I knew somebody, that wasn't because it was part of my
husband's treatment. It was really just because I happened to be in the
health care world and know a lot of people who have different expertise. So
it's very much hit or miss whether you actually get the kind of support and
help you need to sort out the situation.

And then I've found better home care help, and was able to more or less
stabilize the situation, although there have been many, many ups and downs.
And as I sit here today, everything is fine. But I could go home this evening
and there'd be, you know, some crisis that I can't anticipate. So it's a
very, very, very fragile situation.

I think many caregivers feel always on the edge, and that's why we're so
reluctant to leave the person to do the sorts of things that are given as
advice--take a vacation, do something for yourself. You always feel as though
you really need to be very close and just monitor what's going on, even if
you're not doing it all yourself.

GROSS: What are some of the different stages you've gone through in terms of
how much of your life you should give up to care for your husband? Should you
quit your job? Should you stop seeing friends, or stop going out or stop
going on vacations?

Ms. LEVINE: Well, I, early on, decided--and I guess it wasn't even really a
decision. I knew I was working at a job I really liked and that was very
important. I was then director of the Citizens Commission on AIDS in New
York City. I did not consider giving up my job, although many people told me
that's what I would have to do, both to spend down to get on Medicaid so I
could get some home care for him, and to preserve--you know, I couldn't manage
to take care of him and work. I, early on, decided that I would have to work.
I needed the income, and I needed the stimulation of being able to be out of
the home. And from a very practical point of view, I physically can't do the
kinds of lifting and moving that is required for him, so there would have to
be somebody there anyway.

What I found most distressing was not the kind of well-meaning, `Oh, it's too
hard for you.' You know, `You can't manage a job and this caregiving that you
do at night.' But the kind of pressure I was getting from the insurance
company and from social workers that I had to quit my job and go on Medicaid.
And I felt that was wrong. From an ethical point of view, I thought that was
wrong. I was willing to work, I was willing to produce, I was willing to be a
taxpayer. And somehow the idea that the only way you could get any help was
to become impoverished just struck me as very insidious, so I never did it.

Now the friends and the going out and the vacations, well, that just sort of
drifted away. I mean, I see friends occasionally. I haven't taken a vacation
really in 10 years, but I travel for my job. I try to make those away from
homes as pleasant as possible. There are many things that I can do that I
enjoy. There's a kind of disconnect now between my life and my friends and
the kind of ordinary things that people do, even if they're not, you know,
very extensive or glamorous. Just taking a walk. I mean, those are things
that I have to think about. Can I do it now? And what time do I have to be
back? All that.

BOGAEV: Our guest is Carole Levine. More after a break. This is FRESH AIR.

(Soundbite of music)

BOGAEV: We're featuring an interview Terry Gross recorded last winter with
Carole Levine. She's a health care policy expert specializing in long-term
care.

GROSS: At what point did you realize that the problems of a family caregiver
were bigger and more systemic than your personal problem and it required a new
set of ethical and policy decisions?

Ms. LEVINE: It took me five years to come to the realization that it was not
me that was the problem. I was doing everything that I could. I was trying
to do everything right. And that it was the system that was out of order.
And I started talking to some of my colleagues, and then in one conversation
when somebody said, `Well, what's new in medical ethics these days?' I said,
`You know, there's got to be some way of looking at what the health care
evolution in terms of the pairs, in terms of cost containment is doing to
families. All the talk is about what it's doing to hospitals, what it's doing
to doctors, but has anybody looked at what it's doing to families by pushing
all of this care and responsibility onto them?'

And from that point on, I was able to engage a number of colleagues in
discussions, and they all said, `Oh, yeah. We never thought about it that
way.' And so after some planning, I agreed to join the United Hospital Fund
in New York City, which is a very well-established philanthropy and research
organization, to create a new project that would do just that, to look at the
impact on family caregivers of the changes in the health care system. And
that started in October, 1996.

So it took me a long time. I really saw it as my personal failure rather than
a systemic failure. Now, I mean, maybe--I must have done something wrong, but
the system is surely doing more wrong than just treating me this way.

GROSS: Let's look at some of the systemic problems that are affecting family
caregivers. First of all, how do you think managed care is affecting what
families face?

Ms. LEVINE: Well, managed care certainly did not create the problems, but
managed care has, I believe, exacerbated the problems, made it more difficult,
because the effort to contain costs by keeping people at home, not in
hospitals, having early discharges and cutting costs in every other way has
shifted all of the responsibilities that used to be taken by professionals to
family members. So it's a kind of speeding up of what was happening before.

At the same time, there has been an explosion in high-tech home care, all the
kinds of machines and procedures that can be done at home. So there's a whole
other industry that is pressing to have services delivered at home. And to be
truthful, most people would rather be at home than in a hospital, so there's a
lot of things coming together.

The other part is, of course, an aging population with more chronic diseases;
people's lives being saved, as my husband's was, and yet not being fully
recovered. So there are all of these social and economic forces that are
coming together to create a lot of pressures on families. And for the most
part, families are truly pitching in and trying to do the best they can, but
without much help and without understanding that they, in a sense, are the
bedrock of the health care system. They are providing all of those services
that make the health care system profitable for those who profit, and wrong
for those who are in the non-profit world.

GROSS: And, of course, families are doing this for free. You estimate that
the economic value of family caregiving, which isn't compensated, is about 19
percent of the total national health care expenditure?

Ms. LEVINE: The economic value of free family caregiver labor, if it were
counted in the health care enterprise, would make that trillion-dollar figure
go up by $200 billion. So it's a tremendous amount of free labor. I think of
myself as a health care provider, but an unpaid one. And if we were
organized, 25 million Americans, about three-quarters of them women--if we
were organized as a labor force, we would get a lot more attention than we do.
But we think of ourselves as wives and mothers and daughters, and we are that
too, but we're also providing a very, very significant amount of free labor to
the health care economy. And that should be recognized. It's not necessarily
it should be recognized in being paid, but in being considered and being part
of the planning process and not being just expected to do everything that
nobody else wants to pay for.

GROSS: What are some of the ways you want the family caregiver to be included
in decision-making and consulted with by doctors?

Ms. LEVINE: Well, you know, when people go home from the hospital, there's
something called discharge planning. And in the old days--in the good old
days, so called--there was a social worker who would sit down with the family
and say, `Well, who can come in and help, and for how long? And let me see if
I can get this and that for you,' and try to understand what the family
situation is. And the person going home would not be going home until they
were really pretty well. And so the situation was not as acute.

Now it's a very haphazard, flurried processed of just signing papers. Often,
the discharge planners will present a family with an option and that's the
only one. `You have to take your mother home today, or she has to go to a
nursing home tomorrow. And the only one that we can find available is 100
miles away.' Those sorts of things. So if the family is involved and can
pursue all of the different options and take a little time to make sure that
the situation that they're setting up is the best one possible, they will be
able to sustain it longer.

Time and time again I hear of situations where family members take their
patient home, and within two days that patient is back in the emergency room
because the family didn't know how to handle what was going on or was
unprepared. And that's a very costly way to take care of patients. So it
really would be cost-productive to give a little more time before discharge,
try to set up a plan that has a chance of working and train people to
recognize when the emergency room is necessary and when you ought to be able
to handle it on your own so we don't have this kind of in-and-out process that
is very, very destructive, both to the family and to the patient.

GROSS: You said that the health care system needs to respect the limits of
responsibilities families can actually assume. You've done focus groups with
caregivers. What are some of the most common things that caregivers say they
want from the system?

Ms. LEVINE: In our focus groups, the caregivers said the primary thing they
wanted was more information; information about the patient's condition, about
resources in the community, about how to navigate the system. They also
wanted recognition of the important role they play in the patient's care and
patient's life. They wanted advocacy to help them navigate the system. And
some of them did say, `I want a little time off,' and they didn't mean a year.
They meant an afternoon. So those are the things they mentioned.

GROSS: Well, they say they want recognition. They don't want, like, a
plaque. What do they want?

Ms. LEVINE: They want the health care professionals to acknowledge them as
important to the patient's care and important to the patient's life so that
they're included in discussions about what's going to happen, so that they're
given information about what is likely to be the prognosis, that they are seen
as part of the care team, not just as the person who brings the patient to the
office. That's really what they want. They want to be included, not only
because they're important to the patient's care; they want to be included
because what decisions are made affect them.

I know that one doctor who I met--was not in my case--at one meeting, a doctor
was waxing enthusiastic about home care. `We can turn the home into a
laboratory for training medical students.' Well, that's my living room you're
turning into a laboratory for medical students. Recognize that my home is my
private space and that what you bring in--the machinery and all of that
stuff--affects my life and the life of the rest of my family.

GROSS: I want to get back to your situation at home. You've been caring for
your husband since 1990, when he became a quadriplegic after a car accident
that left him in a coma for five months and affected him on every level. How
much help do you have at home now?

Ms. LEVINE: I have an aide who's with him every day when I go to work and
several hours on Saturday and Sunday to get him up and put him back to bed.
Essentially, I'm the nighttime nurse, unless I have to travel, and then I have
one of the aides stay over. And I pay for that myself. No government help or
insurance help for that.

GROSS: Not qualified for that?

Ms. LEVINE: No.

GROSS: And you think you should be?

Ms. LEVINE: Yeah, I think I should get some help. I think I damn well should
get some help. Excuse me, Terry. But, hey, you know, otherwise if we spend
down and he goes into a nursing home and Medicaid pays for it, everybody pays
for it. I'm willing to pay for most of it, but a little help wouldn't be so
bad. Yeah.

GROSS: Well, Carole Levine, thank you very much for sharing some of your
ideas with us.

Ms. LEVINE: Thank you, Terry.

BOGAEV: Carole Levine is the editor of "Always On Call," a new book about
family caregivers. I'm Barbara Bogaev, and this is FRESH AIR.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Profile: Jug band music from the 1920s and 1930s
BARBARA BOGAEV, host:

Rock historian Ed Ward has been listening to a collection of classic
recordings from the 1920s and '30s that feature another distinctly American
music genre, the jug band.

(Soundbite of music)

Mr. ED WARD (Rock Historian): The jug band was born out of the impulse to
make music with anything you had in hand. The name itself comes from the bass
instrument, a ceramic or metal jug played by buzzing the lips over the
opening, although other devices including stovepipes were also used. Kazoos,
nose flutes, clarinets, guitars, fiddles and harmonicas, anything went in a
jug band. The most famous ones, the ones that made the most recordings
anyway, were in Memphis.

(Soundbite of music)

Unidentified Woman: (Singing) Don't you never let one woman rule your life.
Don't you never let one woman rule your life, 'cause she keep you working
(unintelligible) all the time.

Mr. WARD: Cannon's Jug Stompers featured the banjo talents of Gus Cannon, a
Medicine Show veteran, and Noah Lewis' harmonic. Mingle with blues like
Cannon had a long life, showing up in the repertoire of The Grateful Dead,
while Cannon actually saw some money in the early '60s when The Rooftop
Singers had a hit with "Walk Right In," a song he'd recorded in the '30s.
About Jack Kelly in South Memphis Jug Band, not much other than their names is
known. Although "R.F.C. Blues" shows Kelly was a fine vocalist.

(Soundbite of music)

Mr. JACK KELLY: (Singing) That RFC joined ...(unintelligible) many men. That
RFC joined ...(unintelligible) many men. Yeah, I be walking down through the
lowlands, and have one more...

Mr. WARD: And harmonic virtuoso Jed Davenport had from time to time, Memphis
Minnie and her husband Joe McCoy and his Beale Street Jug Band.

(Soundbite of music)

Mr. WARD: All of these bands formed because of the undisputed king of jug
bands, though, the Memphis Jug Band.

(Soundbite of music)

Unidentified Man: (Singing) Chew that thing, boy. Oh, that Fourth Street
mess around.

Unidentified Group of People: (Singing) Oh, mess around, mess around, mess
around.

Unidentified Man: (Singing) Reaching 80 down in Memphis town.

Unidentified Group of People: (Singing) Memphis town, Memphis town, Memphis
town.

Unidentified Man: (Singing) Go down Fourth until you get to Vance; ask
anybody about that brand-new dance. The gals will say, `You're going my way.
It's right here for you. Here's your only chance.'

Mr. WARD: Led by Will Shade, the guitarist, and with a changing cast of
characters, the Memphis Jug Band was famous for its popularity with black and
white audiences and for its unpredictable stage antics. They left behind over
40 records during their career with songs about everything from cocaine
addiction to unfaithful women to spiders. But jug bands weren't really a
Memphis institution, it turns out. The first ones to record came from
Louisville, Kentucky.

(Soundbite of music)

Mr. WARD: The Dixieland Jug Blowers had recorded behind blues singer Sara
Martin in 1924. And the record executives decided they needed their own
session. "Banjoreno," which we just heard, is a later recording, one of many
they made.

(Soundbite of music)

Mr. WARD: Kentucky Jug Band was another Louisville group. And the "Walkin
Cane Stomp" was a show-stopper. Since the flute you hear was also a cane used
in the dance numbers. And while the Memphis bands incorporated a lot of blues
into their repertoires, most jug bands walked the line between jazz and rag
time.

(Soundbite of music)

Mr. WARD: Whistler's Jug Band's, "Jug Band Special," is a perfect example.
Like most other specialized music, jug band music disappeared from the
recording scene with the advent of the Depression. Although jug bands could
be seen on the streets of Memphis right into the '50s. Revived during the
folk era of the '60s, jug band music is a real milestone in the American
tradition of improvisation in a hotbed of wild and crazy music.

BOGAEV: Ed Ward lives in Berlin. He played music from "Ruckus Juice" and
"Chitlins" Volumes One and Two.

Coming up, a review of the new Lars von Trier film. This is FRESH AIR.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Profile: New film "Dancer in the Dark"
BARBARA BOGAEV, host:

"Dancer in the Dark" is the new film by Danish director Lars von Trier. It
stars Icelandic singer Bjork who performs her own music, Catherine Deneuve and
American actors David Morse and Joel Grey. Von Trier is best-known here for
his film "Breaking the Waves" with Emily Watson. Film critic Henry Sheehan
has a review.

HENRY SHEEHAN:

"Dancer in the Dark" is such an oddball movie that it's hard to pick an angle
to come at it. It's a downbeat musical, stylistic turning point for the
filmmaker, an acting triumph for a non-actor. And like the majority of films
by Lars von Trier, it's about a female saintly self-abnegation for the sake of
a male. Selma, a Czech immigrant to the United States, works in a Washington
state tool and die plant in 1964. Alongside her best friend, a French woman
played by Catherine Deneuve. To add to the national confusion, Selma is
played by the Icelandic singer Bjork. And the movie was shot in Denmark.

Selma is a quiet, self-effacing woman and so is Bjork's performance for the
first 20 minutes or so. Wearing thick glasses, dressed in frumpy clothes and
half-hidden by the industrial press that turns aluminum plates into tubs,
Selma is the quintessential mousy immigrant, a familiar figure to anyone who's
ever worked a factory floor. Selma is going blind and becoming increasingly
sensitive to sound. The rhythms of the machinery provoke a musical fantasy in
her mind which soon takes over the screen. This will happen again and again
throughout the movie as the clickety clack of a train or even the scratches on
the record form the rhythmic basis of a musical number. Music becomes the
medium through which Bjork builds a heart-piercing performance.

This isn't the sour contrast of reality in musical fantasy that made up
"Pennies From Heaven." In "Dancer in the Dark," the musical segments create
not an alternate but supplemental reality where Selma can express truths about
herself, truths she cannot speak otherwise. Selma and her boy Gene live in a
small house on property owned by a local policeman and his wife. They, along
with Deneuve and another factory worker with a yen for Selma, know that she
doesn't have much money, and so pitch in to buy Gene his first bike for his
10th birthday.

(Soundbite from "Dancer in the Dark")

Unidentified Man: It's about the bike.

Unidentified Woman #1: The bike?

Unidentified Man: Hmm. The bike.

Unidentified Woman #1: I cannot give--give Gene a bike.

Unidentified Woman #2: (Foreign language spoken)

Unidentified Man: (Foreign language spoken)

Unidentified Woman #2: No.

Unidentified Woman #1: Gene. Did you ask them to come over?

GENE: No.

Unidentified Woman #2: No, it doesn't--he doesn't know anything, Selma.
Frankly...

GENE: Why, have I done something?

Unidentified Woman #1: No. I haven't got any money.

GENE: I'm almost the only kid in class who doesn't have a bike.

Unidentified Woman #1: I'm--I'm--I'm just not that kind of mother.

GENE: Can't you be that kind of a mother?

Unidentified Man: We'll see. We'll see.

Unidentified Woman #1: Careful. Careful.

Mr. SHEEHAN: This scene, along with many to follow, challenge our notion of
charity. Not just giving to the poor, but charity in a larger, religious and
philosophical sense in which moral obligation rather than whim dictates
giving. This preoccupation has always marked von Trier as a religious
filmmaker, moral rather than moralistic despite the violence and sex, which
populate his films. Selma, we learn, is atoning for a selfish act, bringing
Gene into the world in the first place. He will inherit her eye disease, and
so Selma has moved to the US, works day and night and saves every penny for
the sake of a vision-saving operation for her son. But she has resolved to
tell absolutely no one what she's doing. This leads to operatic complications
and a tragic climax.

Von Trier is a leader of the dogma group, which in the mid-1990s promulgated
an artistic declaration. Films will be shot on handheld video cameras with as
little contrivance as possible. Now, von Trier exposes this lack of
contrivance as merely another contrivance. Video images are nearly square
when they are first filmed. And in "Dancer," von Trier composes images
tightly to that square. But when these same images are blown up and distorted
to fit the rectangular screen, a distancing effect takes hold. On the other
hand, the musical sequences are composed to fit that rectangular shape. Five
years after ejecting the notion of composition altogether, von Trier is making
tentative moves back towards tradition. He is not spurning the dogma
experiments, but integrating them as his movie moves between Selma's daily and
her musical or spiritual life. Von Trier's efforts are not nearly so costly
as his heroine, but there are in their way as daring.

BOGAEV: Henry Sheehan is film critic for the Orange County Register. For
Terry Gross, I'm Barbara Bogaev.
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