Carol Levine joined the United Hospital Fund in New York City in October 1996 where she directs the Families and Health Care Project. This project focuses on developing partnerships between health care professionals and family caregivers, who provide most of the long-term and chronic care to elderly, seriously ill, or disabled relatives. Ms. Levine also directs The Orphan Project: Families and Children in the HIV Epidemic, which she founded in 1991.
By way of introduction, could you describe your personal and professional experience with the topic?
My husband and I were in an automobile accident in January 1990, and he suffered very severe brain damage. He was in a coma for four months, and then in a rehab facility for a long time. Eventually I brought him home, where he has been since. He is totally dependent. He is quadriplegic and has some significant brain damage. So I’ve been caring for him with the aid of a home care aide during the day, but I’m the night nurse. I had been working in health care and medical ethics for many years. Then in 1996 I began to become professionally interested in what seemed to me to be my impossible personal situation. Then I joined the United Hospital Fund in New York to develop a project to create awareness and resources for family caregivers. I’ve been working on this for almost ten years.
I speak to a lot of caregivers in my work. I would say the majority of them are not caring for a spouse; they are caring for an elderly parent. But there are many spouses among them.
What kind of adjustments to the care relationship surprised you from your own experience?
The big surprise was that there was no help for any of it, and that it was just assumed that I would just take over his care without any training, without any support, without any financial backing, without anything. It was as though the medical system was saying, “Okay, we saved his life, now you take him.” As a professional involved in health care, I expected more and thought I could make the system work. I just thought that there would be more available through any number of mechanisms to help me. I was willing to do it, it never occurred to me that I wouldn’t do it, but it also never occurred to me that I would have to do it all by myself, and essentially that’s what I have to do. So that was surprising, and infuriating.
It’s different with a spouse in the sense that spouses are legally responsible for the care of each other. You are not legally responsible for your parents; you may be a good person, good daughter, good son, but you literally don’t have to pay for their care. And you don’t have to take them into your home. If you do take them into your home, you have to treat them without abuse or neglect. But if you don’t make that choice, you are not responsible. They can become eligible for Medicaid, for example, and you don’t have to give up your job. That has made a difference for me in terms of what’s available in financial assistance. So it is different for spouses beyond the question of the relationship. It’s different in terms of the actual benefits and services that are available.
Are there challenges in internal dynamics of spousal relationship?
Yes, of course. As much as you may love your parent, and I took care of my mother through the last year of her life—long distance care giving which has its own challenges—there is certainly a sense of loss. But it’s different with a spouse because this is the person that is, in a good marriage at least, your closest friend, your lover, your helpmate. And if you have been married for a while, you’ve adjusted to a certain kind of sharing. And it may not be fair, but it is what you are used to. Then all of a sudden, that person can’t do some or all of the things he or she used to do. Having to do those things, taking over some of the responsibilities, might be very difficult to deal with, or might be wonderful. In either case, you’ve lost the very person who would be there to support you if he or she were not the person needing help. So when you are taking care of a parent, you have a partner you can talk to about the problem and get advice, and get some acknowledgement and some sympathy or some help, some physical help. When the person you would turn to is the person in need, you are deprived of that support, and that’s very, very hard. So it’s very different.
Are there any rewards?
Not for me. People do feel rewards, but I don’t see a single one. I’ve become tougher, I’ve become more cynical. I’ve become more protective than I thought I ever would be towards my husband. He is older than I am. I thought he was always the one who would be protecting me. Now he can’t, and I have to protect him. So, I guess if I had to look for a reward I would say it’s the knowledge that I’ve done the very, very best anyone could have done in this awful situation. I feel absolutely no sense of guilt that I could have done anything better. A lot of people don’t always feel that, so I guess that’s a reward. I feel that through my work, not through the caregiving directly, I’ve moved the field in a positive direction and through the United Hospital Fund’s support of many innovative projects we have demonstrated that health care providers and family caregivers can work together as a team. I’ve become a better writer because I’m liberated from any kind of concern about what people might think of me. What can they do to me that the world has already not done? Other caregivers do feel rewards. They become more spiritual. They get closer to the person they are caring for. Fine, good, God bless them. But I don’t.
Sometimes I say, what have I learned? I’ve learned how to crawl under a hospital bed and reattach a motor, that’s a really important life skill. I’ve learned not to trust the healthcare system. What people tell you is often not what actually happens. Or if it is, that’s great, but I have to double-check everything myself. I’ve learned to be extraordinarily vigilant because no one understands his care better than I do. I’ve learned that the people you think will be your friends and will be there with you are not necessarily the ones who do come through, and that people that you might not have anticipated would stay with you; some of them do. So friendships based on the past don’t always work out. Some people can’t deal with illness and disability at all, and some people, surprisingly, can. I guess I’ve learned to accept whatever it is. I don’t get mad at people when they don’t call me or they avoid me, which they do.
What is that quality that the people who get it have? And what is it that people who don’t follow through are afraid of?
They are afraid of it happening to them. Somehow they are afraid it is contagious. They wouldn’t say that, but that’s what they are afraid of. They are afraid they will say the wrong thing or do the wrong thing. But the most common reason, if they were honest, would be, “I don’t want to be near him, because then it would happen to me, and I couldn’t take it if it happened to me.” And sometimes they will actually say that.
I moved twice after the accident, but we had also moved before the accident. We had moved from a suburb where we had a lot of good friends, and a great group of people whose kids all grew up together. I don’t see those people very frequently because they are still up there in the suburbs. But every once in a while I will meet somebody from that earlier period and I can tell by the terrified look on their faces, they are thinking, “Oh, my God, did Howard die and I didn’t hear about it? How do I ask how he is? Wouldn’t it be awful if he died and I don’t know about it?” So I put them out of their misery right away and make some remark that lets them know he’s still alive, at home, and reasonably alert and aware.
We hear over and over again that it’s important for the caregivers to take care of themselves, but it can be just as overwhelming to try to figure out how to do it. Do you have suggestions, again, personal and professionally in this field? What should they be sure to do?
I’m the worst person to ask this because I tell everybody the same thing and I don’t do it myself. I went through a very horrible period where I really needed hip replacements, but I couldn’t quite figure out how to do that. Finally it just got so bad that there was no choice. I just was going to die if I didn’t get it done so I managed to do it, but it really took a serious debilitating episode to make me do it. A lot of caregivers don’t have regular doctors and it’s hard sometimes. It’s especially hard for women who have quit their jobs so that they could take care of somebody, and then don’t realize that losing your job means losing your health insurance. So that’s something they hadn’t really counted on. So there can be money issues as well as just time issues. But mostly it’s a question of priorities, and it just does not seem to be a big priority.
What to do about it is to make doctor’s visits more flexible, and more predictable so that when you go to the doctor and your appointment is for two o’clock, you are not sitting there at three-thirty waiting to be taken in. That’s care giving time that you can’t take, and if that’s the way it’s going to be, you are likely to avoid it. So I would think there should be some way of making more caregiver friendly office visits. “This person is a caregiver, she has to be seen when we say we are going to see her, she can’t take four hours. She has to be seen within fifteen minutes of arrival.” You know, there are simple little things like that make it so hard that no one really wants to think about. Why don’t caregivers go to the doctors or follow diets, or exercise, or go to the gym? Well, hey, wait a minute, it takes a real effort to do any of that stuff. When am I going to do it?
Are there policy changes or community changes that we can make to better support giving care at home?
Well a lot of things would make a difference. One of the things is giving caregivers better support and training because a lot of their anxiety comes from not being sure of what they are supposed to be doing and whether they are doing the right thing. In the beginning that’s an enormous source of terror. I think respite is clearly one of the things that is important to do. But respite programs have to be very well run and very, very sure that they are providing the best possible care for the care recipient because caregivers are afraid that if they leave, something bad will happen. And the care recipients don’t want it either. They want you to be there. You have to develop a confidence that the service is actually going to do as good a job as they possibly can. Whether those things are affordable would be very important too.
There are all kinds of other things that communities can do in terms of supportive services and having people who can help out with specific tasks, and having more feeling that somebody would be available in an emergency if you need them. I’ve been thinking, actually how ill-prepared we were in this country for Hurricane Katrina — how unprepared the system is for dealing with all those people at home. Everyone is now talking about better plans for evacuating nursing home residents. Well, fine, but what about all of us who are at home? Those of us who, if there is no electricity, can’t get out of the house? All those who nobody knows are there? There is no way to register people. I live in a city in an apartment, but if you live in a rural area and something bad happens, there’s no way. Neighbors might know that you are there, but they are busy saving themselves. They are not all necessarily going to be able to help you. So, in my apartment building, I asked the management to keep a list and update it of all the people who would need assistance if there were some problem. That would be elderly people, and that would be people who have disabilities, and that would be people with young children who might need assistance. The problem is they have their list in their management office, and it would not be available to us in an emergency. But even beyond that, I don’t know whether anybody would actually do anything. I live about twenty blocks from the World Trade Center site. We went through this a little bit on 9/11 but that was different because as horrible as it was, it did not affect services. We were in a lockdown zone for a while, but it was confined to a fairly specific area.
So we need to have some confidence that someone knows that you’re there, and you are there alone and you really can’t do anything without some help. That would make you feel a little bit better. I think communities ought to have some plan for assistance in the case of emergency. But on a day-to-day basis, it is very hard to think exactly what could be done.
Is the funding, as far as getting help, paying for all these things?
No, there’s no financial help unless you are very, very poor and then you can get some modest help, but otherwise you get no help whatsoever. So there’s nothing, I don’t know of anything. Nobody will pay for what they call for custodial care, which is what my husband, they think, needs. I find that an offensive term. There is no financial help. There is consumer directed care, which everybody wants to do. And I say I’ve had it for at least fourteen years. I hire, I fire and I pay. I have the ultimate consumer directed care. As I said, I, as a spouse, am responsible for this. You can’t walk away from it unless you walk away from your spouse, which, you know, most people don’t want to do. So you’re trapped, you’re in this situation where your own future — your own retirement, so called, should it ever happen — is totally at risk because you are spending everything in the care of the one person who needs the help right now, and you can’t think about what you might need at some point in the undetermined future.
Illness does strange things to people. You don’t quite know what it is going to do, but it’s the change of roles and the change of relationships that’s the really tough, hard stuff. The problem is that most advice you get, if you get advice, is hard to follow, and is not particularly realistic. I think you just have to deal with what you can deal with and not deal with what you can’t.