Carol Levine is the editor of “Always On Call: When Illness Turns Families Into Caregivers” (Vanderbilt University Press, 284 pages, $69.95), a collection of narratives, advice, and information on care giving written by caregivers and health-care professionals. First published in 2000, the book has since been substantially updated; a second edition was issued November 26. Ms. Levine, also the director of the Families and Health Care Project at the United Hospital Fund, spoke with The New York Sun about the climate of home care in America.

Q: Families in America have been caring for their sick for generations. What is different today?

A: Fifty years ago, if you had something terribly wrong with you, you got better or you died. You didn’t linger on as you do today. What’s different for family caregivers now is it is far more medically demanding and more long-term. Hospitals are discharging patients earlier and with very complicated equipment and medications that many families are unprepared to handle.

On top of that, family size is shrinking and women who traditionally took care of the sick are now in the work force and unable to play that role. The pressure of this reality is taking its toll on caregivers and their families, and the health-care system is not doing enough to help them.

Are you suggesting families should not be responsible for their sick?

There is a cultural attitude that people are supposed to take care of their families and it’s not anyone else’s responsibility. This American commitment to self-reliance is being pushed too far. Families are beginning to crumble.

I would be the last one to suggest caregiving is not a family obligation. I’ve been taking care of my husband for 15 years under the most difficult circumstances. I do it and I believe in it.

But if you’re assigning acute care to me, don’t you think the professional has an obligation to train me and not just say, Do it on your own? If family caregivers are saving $257 billion a year for the health-care system, shouldn’t that kind of an economic contribution demand in return at least training and support?

It’s not a question of abandoning family members, it’s getting help in a way to do your part without a total sacrifice. This is too important a health issue to be put on untrained family members.

What is happening to families without the support you say is lacking?

The stories I collected in my book are those of survivors. They speak of the amazing resilience of people who are coping with profound changes to their jobs, their relationships to others, and their identity.

A lot of people, however, don’t survive. A lot of caregivers die, get sick themselves, and get extremely bitter at members of their families they didn’t think helped as much as they should have. I’ve heard of families that are really torn apart, overwhelmed with the responsibility of care, and often unable to afford the costs that come along with it.

For example, I met a professional social worker from Cuba who was taking care of her mother suffering from advanced Parkinson’s disease. Having emigrated from the island in the 1970s, the family felt dislocated from their culture. For her father, this isolation and her mother’s condition proved so overwhelming that he ended up shooting the mother and himself. Then there is the story of a rabbi whose wife suffered from an aneurysm, losing her power of speech. As a rabbi, people always came to him for answers, but when he became a caregiver he didn’t know where to go to and how to handle it.

How has this “forced self-reliance” affected you personally?

When my husband became a quadriplegic in a car accident in 1990, I was working in healthcare policy and medical ethics related to HIV/AIDS. I thought I was really clever about medicine, but I learned it didn’t matter how much I knew or who I knew. When it came to chronic care of this ill person, I couldn’t manage the system and get the help I needed. I felt inadequate and responsible.

After five years I began to think it was not my fault, and that the system was not set up to deal with my husband and with a caregiver like me. And placing the whole burden on me was wrong. I realized the world of caregiving had to change and I was going to do something about it.

How does the world of caregiving have to change?

The common perception is that caregiving is a kind of relatively simple, relatively benign activity, where you just give a little assistance here and there. People did not have big health problems. They were just old and frail.

In the ideal world, our policies and our practices would catch up to what is really going on, in terms of support and understanding for caregivers. It would recognize the magnitude of stress this responsibility carries.

Additionally, everyone who is now trained in the health-care field would have some exposure to caregivers. Clinicians would have an opportunity to do home visits to see that the caregiving they had advised was being followed through.

At a policy level, politicians would look at the caregiver as part of a unit of care. Everything is always built around the caregiver, but family members have no rights or recourse. You are just told to do, without having your needs and capacities recognized and addressed.

The system has to step in and somehow work with the family. We are in a crisis mode, and it’s only going to get worse. And as the baby boomers become not only caregivers for their parents, but in need of caregiving themselves, the strain on the system and families will be enormous.

Is there any silver lining for caregivers today?

There is a lot innovation, creativity, and passion directed at this issue through the National Family Caregivers Support Program (www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp) and through many state programs. New York City has a number of excellent programs.

But the efforts haven’t quite come together in a powerful movement that educates and advocates. As a result, a lot of people don’t know about services and whether or not they are eligible. That needs to change.