Reflections with Carol Levine  

Jed Levine interviews Carol Levine

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 providing care.

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 different.

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 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