Talking With Carol Levine: What Policymakers Can Do for Caregivers

The author of "Always On Call" offers holiday survival tips for caregivers and a wish list of government resolutions for 2009.

In the heat of this fall's presidential campaign and the economic disaster that dominated it, most people may not have noticed that more attention was paid to the views of Joe the Plumber than to the plight of the family caregiver. One person who did notice was Carol Levine, the director of the Families and Health Care Project of the United Hospital Fund (FHCP) and the Orphan Project: Families and Children in the HIV Epidemic, which she founded in 1991.

What kind of help do caregivers want? What kind of help do they need? How likely will they be to get help from a new administration and congress? These are the kinds of questions that absorb Levine and FHCP, which focuses on the development of policies and programs that support family caregivers.

Levine knows both the political and deeply personal challenges of caregiving. For 17 years, until the death of her husband, Howard Levine, in 2007, she worked by day on behalf of family caregivers at the United Hospital Fund and by night as caregiver for her husband, who sustained serious brain injuries in a car accident at the age of 61. No wonder she named her 2000 book, a compendium of information and powerful personal caregiver stories, Always on Call.

Earlier this year, in an article in the New York Times Magazine called "Two Husbands," Levine wrote evocatively of the personal emptiness that overcame her long before Howard Levine's death, when she felt she lost him to "a series of reminders of what was and what might have been. It was a kind of widowhood with a living partner. And so it went for years and years and years. I thought it would last forever."

In an interview with, Levine offered her holiday advice to other caregivers who have "lost" a spouse or parent to Alzheimer's, stroke, or another illness that affects the brain. She also shared her thoughts on what caregivers should ask for and expect from the new government in Washington.

Can you describe the experience of feeling that you lost your husband twice?

After his accident, I felt that the wonderful, vibrant, intellectually stimulating, and exciting man that I'd been married to for 30-some years was gone. The loss was profound, but only after he physically died did I realize the enormous grief I had experienced at the earlier loss.

He wasn't the same person. And he was a difficult person because of his brain injury and his frustration at being so limited at what he could do and experience. I loved him still, but we were no longer partners. I was his caregiver -- which is not to say that I wasn't his wife and protector, but it was very different.

So I felt that I had lost him the first time, but I couldn't exactly say that. And then when I lost him for real, I kind of missed them both. When I used to come home to our apartment, I wouldn't take off my coat. I'd always go right into his room, and he'd say, "Hi, Bird (his nickname for me), how are you?" I had gotten so used to that -- it was a reassurance that he was still there.

Do you have advice for other caregivers who are facing the holidays in a similar situation?

You have to be in the moment. Enjoy the holidays the best you can, because this is where you are now. Don't tear yourself up comparing this holiday with holidays 10 or 25 years ago. There's plenty of time to relive those other moments, but don't let them spoil what is this moment.

There's usually something you can focus on. Maybe it's a young child, maybe it's a special food -- it can be very small things that really matter a lot -- and it doesn't have to be a re-creation of the best Christmas you ever had. A certain nostalgia and sadness around some of the holiday events are inevitable, but maybe they weren't as perfect as you remember anyway! So don't romanticize them.

My other advice is to keep things as normal as possible. Don't try to make huge changes around these times. Try to orient other family members about what to expect and how to behave, so that you don't find yourself taking care of them. You know, if people haven't seen Dad or Mom or another loved one in six months or a year, they may be shocked. And try to time things so that and the person you're caring for doesn't get overtired. Limit the holidays to the really important people and the most meaningful parts to you, and skip the stuff that's not essential.

With a new administration taking over in January, what kind of policy changes will you be working for?

It was very clear in the campaigns that long-term family caregiver issues were not on anybody's agenda. I have a feeling that it's going to take a major effort to put them on anybody's agenda because of the economic catastrophe, if I may use such a bold term, and because the emphasis in the proposals to date has been on access to care.

I understand that access to care is a crucial issue. On the other hand, unless we deal with the long-term care and quality of care, what are we getting access to? We really need to have a vision that goes beyond being able to get a physical and have your immediate needs taken care of. This has to be access to a more comprehensive and more coordinated set of services.

Once we do get long-term care on people's agendas, we need to start with redefining it to include the care that family caregivers provide in the home and in the community. Right now policymakers think of long-term care as nursing homes, assisted living, formal home care -- they exclude from consideration the bulk of it, which is not paid for and is provided by family members. When they do consider it, it's to think, 'We can get the family to do it, so we don't have to pay for it.' But it has to be a much broader agenda.

So I would start there: When we talk about long-term care, what are we talking about? This kind of romanticization of community care has got to be replaced by a realistic view of what it takes for a chronically ill elderly or disabled person to get good quality of services and have a good quality of life, and by acceptance of the idea that the caregiver is not made into a 24/7 unpaid provider of care. I don't think that message has gotten through to policymakers yet.

What kind of help do caregivers want most?

Some caregivers have very, very modest expectations. Some don't even have an idea that they ought to be thinking about what might be helpful to them. Typically, when I talk to family caregivers and we do surveys, they respond to the question "What do you need?" by saying what the patient needs. That's where your mind first goes, not to yourself, and until those needs are met, you don't feel good as a caregiver about asking about anything for yourself.

Making Medicare more attuned to people with chronic conditions is one thing that would be of enormous help to caregivers, who now must deal with all the limitations of current Medicare policy.

Why do you think that is, given that caregiving is becoming a huge reality and a big industry?

Because it's women's work. It's largely poor, immigrant women -- people who don't have a lot of clout -- and in some areas, there just aren't the people to do it. I must say that I couldn't have done what I did without really superior homecare aids, but I found them and trained them myself. Otherwise, it's not that the quality of care is always bad -- it's just that it's variable.

Workforce issues are enormously important, and they go together with the long-term care problem. We need a major national effort to upgrade this work so that those who want to do it and find it rewarding -- and many people do -- get the kind of status and options that they deserve, and that those who don't want to do it full-time don't have to.

You've said that not having to be a caregiver 24 hours a day saved your life.

I couldn't have done it. I'd be dead. First of all, I couldn't physically move my husband or get him in and out of bed. There was no way I could do the intensive level of care that he required on my own. I did 12 hours a day and managed the rest, so it's not like I didn't do anything. But I couldn't do this heavy-duty lifting, and he didn't want me to. He was proud of me for being able to work. I felt that it was a suitable, acceptable compromise. It wasn't great, it wasn't horrible -- it was acceptable. It was right for us.

Now, I would never say that's right for everyone. People make their own choices. But caregivers ought to have options. There are many extraordinarily devoted men who are caregivers and give up jobs, but that doesn't seem to be expected of them in the same way that it is of women.

Why do you think we need to change the way we look at the unit of care from the individual to the family?

Normally, Medicare, Medicaid, healthcare insurance, and health policy in general sees the beneficiary as an isolated individual. Even if a husband and wife are covered by the same insurance, there's no family context. So for doctors, nurses, even social workers, and other people who provide services, who is the client or patient? It's the person who's the beneficiary.

The other people around that person are supposed to be resources and not individuals in their own right. You matter only in how you're able to support that person and what you're able to give, not in respect to what you yourself may need to be able to do that and what your limitations as a resource are.

What do you wish you had known when you were caring for your husband?

I wish I had realized how hard it was going to be to get basic healthcare for my husband. The physical barriers to ordinary care were astonishing to me. For example, all people with disabilities know this, but doctor's offices are set up for healthy people, not people with disabilities, whether cognitive or physical.

The exam rooms are small, they don't really allow for wheelchairs, the tables are high, there's no special equipment for people to get X-rays or other tests. You go in and the nurse says, "Hop up on the exam table."

What that does to a person with cognitive problems is to make them very anxious, very agitated, and then they're not cooperative. And the reaction of the technicians and others was to blame me, the caregiver, for my husband's crankiness: "Tell him to be quiet." I encountered that a lot.

One time we were in an office and a secretary said to me in a loud voice, "Can't you move that wheelchair?" I said, "That wheelchair is not a wheelchair -- it's my husband!" Then you get a dirty look and attitude. I was trying to be so protective of him and at the same time understand that these were busy people with a lot of stress. I didn't want to go in and make myself unpopular. But it was very hard.

About three years before the end, I did find a physician who came to the house, and that made a huge difference because he could examine my husband in his own setting. We couldn't do the things you do in an office, but at least he did get to see him in a situation where he was not so stressed out.

Anything else you wish you'd known?

That transitions are extremely difficult. I didn't realize how hard it would be when my husband had to go into the hospital or come out, go into rehab or come out. The discharge process and the whole experience of going back and forth are really traumatic. I wish I had better known how to handle that.

I had a lot of bad days during those 17 years, but one of the worst was when Howard went from the acute setting, where I thought I finally understood what was going on, to a rehab setting, which was totally different and where there were many different expectations of me.

In acute care, nurses and aides take care of everything and keep family members out of the picture. You're a visitor. In rehab, I was expected to do laundry, feed my husband (when he finally went off the feeding tube), and keep him quiet and submissive, although he was frustrated and angry, as are many brain injury patients.

In acute care, following the main doctor's lead, everyone acted as though Howard would recover fully. In rehab, it was assumed that I knew that he would not fully recover and so my questions and prodding were seen as "denial."

We have a new campaign and website, Next Step in Care: Family Caregivers and Health Care Professionals Working Together, which we'll be launching in the new year, with a lot of materials for family caregivers and providers to try to make people in these admittedly difficult and rushed experiences at least a little more informed.

Does the material goes beyond the typical discharge summary people receive when leaving the hospital?

Oh, yes. Altogether, we have 16 guides for caregivers and 3 for healthcare providers. For example, one is a guide to medication management, because people are taking so many meds. Yes, the discharge nurse will give you a list of the prescriptions, but then you need to know what they're for, how to make sure that all of the ones that were routine before are back on the list and whether or not the dosages have changed, and what to do when the pharmacy and the hospital formularies are different. That's a big source of confusion and error.

Then there's a family caregiver needs assessment, a "real-world" introduction to homecare and rehabilitation. It's mostly to assess what things you can do, what things you could do if you were trained in it, and what you just aren't going to do. It gives family caregivers the sense that they're entitled to ask for help and not be expected to do everything. There's a kind of expectation that if you're willing to do one thing, you're willing and able to do everything. And that's just not the case.

Another important area is the Health Information and Privacy Act (also known as HIPAA, the Health Insurance Portability and Accountability Act, designed to protect patient privacy and confidentiality of medical information). That has been so misinterpreted by healthcare providers. This guide is for providers and family caregivers to know what it's for and how it should not be used as a screen to keep caregivers from getting the information they need.


about 9 years, said...

about 9 years, said...

Carol, I appreciated your honesty in acknowledging that you felt you lost your husband due to the brain damage as he changed so profoundly but more on point was the fact that you couldn't admit it openly. I too, felt the same when my husband suffered a massive stroke in 1997. He was 47 and I was 41. It has been like there can be no negative comments about him or any inference to any suffering on my part. That was 13 years ago and when i could no longer care for him at home his family and one of our daughters made my life a living hell. It's as if no one counts but him and I can certainly identify with your PTSD symptoms. I feel these experience modify our personality as well. Things are 98% better for me but I still feel in limbo because the grieving never ends and I can't move on. I wonder if there will come a time when the grief ends and I can move on and become enlarged by this experience rather than shrivel up and wall myself off so that all my relationships are affected. It is hard enough to care for someone whithout being criticized. I cared for my husband at home 8 1/2 years and it is if this doesn't matter to anyone. During which time I suffered emotional and physical abuse at his hands. I feel as if I trapped in a bad nightmare that will not end.