Part I of our Reflections interview with Carol Levine
was in our Spring 2010 issue.
JED Levine (JL): You’ve done some research on the
issue of the younger caregiver. What have you learned?
Carol Levine (CL): With the National Alliance for
Caregiving, the United Hospital Fund did a survey of young
caregivers from eight to eighteen. There are conservatively
1.8 million young caregivers who are taking on significant
caregiving responsibilities, not kid chores. There also are
many young adults 18 to 30 who are caregiving as they
try to negotiate education, jobs, and social life. Some of
them are doing spectacularly well and some of them are
not doing well at all.
We learned that nobody in this country has been
meeting the needs of these kids. “Put them in foster care?”
Not the answer. Some say, “It’s good for them. They’re
learning self reliance and they’re learning to help.” They
do get something out of it, but the overwhelming nature
of it can disrupt their lives, their education and their plans
for the future. There is one good program in Florida—
the American Association of Caregiving Youth working
through the schools.
JL: There’s a difference between personally taking care
of a grandparent and being part of an extended family
CL: Maybe mom is working to pay the bills, and the kid
has to come right home from school because otherwise
grandpa won’t eat. The child’s own development,
education and socialization often gets out of hand.
JL: Many members of our Junior Committee — an active
group of young professionals between the ages of 21 and
35 — used to care for a parent or grandparent and some
still have those responsibilities. Now they’re turning that
interest and experience into something constructive.
CL: I always say, “If you scratch a social worker, you probably
will find someone who was a child caregiver.”
JL: There are so many caregiving alliances, books and
articles. It’s part of the popular culture. Yet, there seems
to be very little action politically or legislatively. How can
we draw more attention to this issue?
CL: The National Partnership for Women and Families, an
advocacy group in Washington, has launched the Campaign
for Better Care to do just that, bringing together the forces
that are supportive of family caregiving to develop policies
and an agenda for change. They have a lot of Washington
clout. The problem is that caregiver, aging, and disability
advocates often have very different agendas and getting
them to agree on key items is not easy.
Caregivers themselves are not generally consistent
advocates. They can tell their stories and that’s effective. But
unless the stories are connected to a policy “ask,” they don’t
further the agenda. The health reform process was focused
on access to care and financing. Everyone points to the
CLASS Act as a major achievement for family caregivers,
and it is a milestone in creating a mechanism for people to
contribute to a fund to pay for long-term care. However,
its benefits will be limited and won’t go into effect for
several years. It will only apply to employed caregivers
who contribute over five years at a still undetermined rate.
Every time something is proposed that would be a change
in service delivery or support for caregivers, we hear “We
can’t afford that” or “Families can do that on their own.”
JL: That’s disappointing.
CL: The one place where there has been some real traction
is in the Veterans Administration. They have a very powerful
case and the families who are taking care of these injured
young men and women have been much more successful.
So, maybe we can learn from them that it’s not a question
of new drugs, it’s basic support that you would need for
a long-term caregiving situation. It’s harder to get people
excited about that.
JL: Alzheimer’s is a long-term illness — it can last 20
years or more. There are so many different feelings: the
initial response to the diagnosis, which is frightening
and upsetting; then acclimating to the various stages
of the disease and mourning the person who used to
be. Caregivers can experience profound sadness, loss,
frustration, anger, guilt, resentment — and at the same
time feel great love.
CL: All in the same day.
JL: When you were facing this, how did you cope? How
did you get through?
CL: In some ways I don’t think I’m through. One decision
I made was to keep working. I knew that I couldn’t
physically provide all the care for my husband, who was
quadriplegic. If I quit my job there’d be no money to pay
for care. I also needed to work for my own sanity. That
was a complication, but it also made it possible for me to
get through those years. For somebody else it might be
JL: Everyone has to find the right solution for themselves.
CL: I found the core of my being was to be a productive
worker. I was told time and again by social workers, “You
have to quit your job because the only way you’re going
to get help is if you’re on Medicaid. Get over it.” I said,
“No. I’m going to work. I’m going to work this out.”
The system says, “Get poor. Or be rich. One or the other.”
And I was in the middle somewhere.
I did get some psychological counseling, a place where
I could talk about what was going on. I have three grown
children with their own lives and their own problems. They
were certainly concerned and involved, but I didn’t want
to make them my support group. One of the myths about
caregiving is that you go through a stage, and then move
on to the next stage. No. It’s up and down, all over the
place. And you never know when it’s going to hit you. I
still feel that way even though my husband died over three
years ago. There are still things that I find hard to accept.
I believe that people who don’t cope well have lost
themselves in their commitment to caregiving. They’ve
forgotten that being a caregiver doesn’t mean losing your
own identity. Being a good caregiver for someone doesn’t
mean that you become that person.
JL: We teach self-care techniques in our Family Caregiver
Workshop that give people permission to have a life. We
let them know that they have to nurture themselves as
well — because otherwise they will not last. When you’ve
drained all your resources...
CL: …you start to feel angry at the person and it’s not
their fault. It’s very tricky. Different people do different
things to support themselves. Some find prayer, religion, or
spirituality helps. Others garden. Whatever works to get
you out of your immediate situation. It helped me that I
had terrific homecare aides for my husband during the day.
That was very important — and very expensive. Fortunately,
for several years my husband received long term disability
insurance from his employer. And I received a MacArthur
Fellowship for my AIDS work, which is unrestricted. Most Fellows spend their money on something exciting like
travel or their work. I spent it on home care.
I’d like people to know how to think about the term
“caregiver.” Many people don’t self-identify as a caregiver
for a long time. I didn’t for five years. If you see yourself
as a caregiver it does not mean that you or your primary
relationship with the person you’re caring for is diminished
in some way. “I’m mother or daughter. I’m the husband.
I’m the partner. I’m not a caregiver.” I’ve heard people say,
“Caregiver sounds too mushy and martyr-ish. I’m not that
at all.” hat’s okay. But you’re not going to find a Web site
that says “Help for husband caring for wife with MS.” You
will find sites that are geared toward caregivers.
In addition, the family caregiver has certain rights and
credibility. You have — or should have — more authority
than people who come to the hospital with flowers. So,
if you don’t like the term in your private world, at least
understand that it has some value when you’re dealing with
the outside world.
JL: There are a lot of reasons why people don’t want to
identify as a caregiver: it’s part of your role as a close
relative, or “She’s my mother. She took care of me. I’m
going to take care of her.”
CL: Exactly. A noble thought and true. But, it’s not the
same today as 30, 40 years ago. Being a caregiver today is
more complicated, demanding and challenging. One thing
I really don’t like is when people say, “You’ve become
a parent to your parent.” A parent is your parent. Your
mother may not remember you, but she’s your mother and
you treat her with respect and dignity as opposed to saying,
“She’s just like a little three year old.” It would help to
mobilize the community of family caregivers if there were
some significant benefit attached — money or a tax credit
or special training or services — something tangible.
JL: Otherwise, you are on your own. Except, of course,
for the resources at the NYC Chapter and at Next Step
in Care. We encourage our readers to take a look at the
caregiver guides and the other valuable information on
www.Nextstepincare.org. Thank you for sharing your
insights with us.
Carol Levine, Director, Family Caregiving Project,
United Hospital Fund
— Jed Levine
Executive Vice President,
Director of Programs & Services