TOPICS > Health

Extended Interview: Caregiver Suzanne Mintz

April 26, 2005 at 12:00 AM EDT


SUSAN DENTZER: I’ve described to you the status of the Briseno family, what they’re coping with. Does that sound characteristic of what families with these heavy care giving responsibilities go through?

SUZANNE MINTZ: The Briseno family is dealing with a very heavy load. The majority of care giving families aren’t caring for somebody who is both quadriplegic and brain damaged. So, they are, I would say, the epitome of the most extensive kind of family care giving there is.

SUSAN DENTZER: Is it possible to quantify how many families around the country are coping with a burden this intense or do we know?

SUZANNE MINTZ: I don’t think we know. We do know that there are more than 50 million people in America who are dealing with some level of care giving, which could be people at the beginning, who are helping Mom with the groceries and then you have the Briseno family all the way at the other end.

We know that over half of the care giving population, so more than 25 million people are putting in on average more than 20 hours a week, so the equivalent of a half time job. So, people are doing a lot of hands-on, heavy-duty care giving.

SUSAN DENTZER: Your organization has worked with others in the past to quantify what this care would cost in dollar terms. Let’s talk about that. All of this care giving that’s going on around the country, what’s its economic value?

SUZANNE MINTZ: The conservative estimate of the economic value of family care giving is $257 billion a year, which is more than twice the combined total for paid nursing home and home care services. And these numbers came out in 2000 and they are equivalent to everything we spent on Medicare in 2002. So, you can get to see the ramifications. We’re talking huge numbers here. Family care givers are literally underpinning the health care system of America.

SUSAN DENTZER: Mr. Briseno quit his job to stay home to take care of, help take care of his child. How typical is that?

SUZANNE MINTZ: Like less typical for a man to leave the workforce to stay home. But families make very hard economic choices. People leave the workforce. They may cut back to part-time. They may not take a promotion that requires travel. So, people make all kinds of decisions in order to provide care, many of which have a negative economic impact.

SUSAN DENTZER: The–in Jay’s case, Jay Briseno’s case, the family is getting a great deal of assistance from the Veterans’ Administration, both in terms of dispatching around the clock, almost around the clock nursing care, certified nursing assistants, home care, et cetera. How typical is it that families have this kind of important safety net to fall back on?

SUZANNE MINTZ: Most families don’t have access to that level of assistance. The services that families need for the most part are the services of the home care, of the home care aids who can come in and help get somebody get out of bed, help them shower, help them eat, do all the things that we call activities of, of daily living. That is not covered by Medicare or private insurance. So, people who get that kind of service have to pay for it out of pocket and it adds up. And so, many, many people are just hanging out there, on their own.

SUSAN DENTZER: Would you say that, in that respect, the Briseno family is fortunate? Having experienced this horrible tragedy in their lives, are they nonetheless fortunate in a sense to have this safety net to fall back on?

SUZANNE MINTZ: They’re very fortunate that they’re getting the level of assistance that they are getting. I don’t see how they could possibly care for Jay totally on their own, given the level of his injuries.

SUSAN DENTZER: What, what do we know about other wounded individuals who have returned now from Iraq, how great the scope is of the care giving that is going on, the family care giving aspect? Do we have enough data? Do we know whether Jay Briseno’s situation is typical, atypical, at the extreme, et cetera?

SUZANNE MINTZ: I don’t think we know, at this point. We certainly don’t have any data on that. But I think any time you take a young person in their 20s and they come home from serving their country with injuries that literally have taken away what would have been a normal, a normal life, we are dealing with tragedies of significant proportions here.

Even someone who has had an injury, let’s say, a leg amputated and so they could go on in life and have a relatively normal life. It’s still never normal in the sense that healthy people would think about. When you are dealing with chronic illness or disability, your life is outside the norm and people who haven’t experienced things like that, families who are not living with people who need assistance on that level don’t have a clue. Most of it goes on in bedrooms and bathrooms and so the rest of the world doesn’t see.

SUSAN DENTZER: Let’s stay on that theme. What are a typical range of feelings and emotions that families going through this kind of situation experience?

SUZANNE MINTZ: Well, there’s a great deal of loss. Care giving families grieve and I call it perpetual grief, because unlike when somebody dies and you can come to some resolution, in care giving if the person continues to go down, to go down hill or even if they stay the same but they’re passing milestones in life, there are losses. What you would have anticipated at–especially with a child, let’s say.

You know, you would have anticipated them achieving at age 10 or 12 or getting married when other kids are getting married or in my own circumstance, my husband has multiple sclerosis, which is a degenerative, neurological disease. Each time you go down another step, there is the loss of whatever independence he still had beforehand. There is the fear of can we cope with this. What else is it going to take for us to maintain some level of quality of life?

And so the grief goes on and on and just maybe when you feel like you’ve gotten over some of it, something else happens. And so, it doesn’t mean you walk around with, you know, this cloud over your head all the time, but there is this level of sadness that is always perceptible in family care givers.

SUSAN DENTZER: This family seems to have coped to a great extent by drawing heavily on their religious faith. They don’t go so far as to say that they think this was all of God’s plan; that their son would be so tragically injured. But they do believe that Jay is walking hand in hand with God at this moment; that God wills him to recover; that he will, in fact, recover and they live out their religious faith day in and day out, to wit, tomorrow will be there when communion is brought to him, as it is several times a week by a, by a priest.

Put that into context for us. Is that a way that families cope typically? And if they don’t have that religious faith, what other sources of comfort do they turn to?

SUZANNE MINTZ: People turn to religion a great deal. Research shows that it is one of the largest ways that, that people cope with, with care giving. People who don’t have a deep religious faith have to find that support within. And I think even people who do have religious faith have to find that inner strength that they didn’t know that they had.

We actually did some research some years ago and found that answer came up a great deal; that people found an inner strength that they didn’t know they had; that you find that if you don’t–you really have two choices. You can fall apart or you can find an inner strength. And I’ll sometimes joke, I have suffered from clinical depression four times. And I tell people, I tried falling apart and that was awful.

So, the only way to go is to go with your inner strength and find the resources within you to, not just cope, because I think coping doesn’t give you a high quality of life, but to reach out and find the resources and the assistance that you, that you need to maintain a good quality of life.

SUSAN DENTZER: As we’ve said, there are many seriously disabled individuals and family care givers in the country who don’t have either the Defense Department or the Veterans’ Affairs Department to offer the extraordinary support that the Brisenos have. What needs to be done for all of them?

SUZANNE MINTZ: A great deal needs to be done to support care giving families. When you think about what it is that we are doing, when you think about the fact that care giving really is a new phenomenon–people forget that in 1900, the average age of death was 46 and people died from infectious diseases. Now, the average age of death is 77.7 or something to that extent and people are dying from chronic conditions. So, they live for a very long time with disabling conditions. So, care giving is something that goes on, not just for a couple of months, but for years and years and years.

And medical science continues to find ways to save people. It is likely that Jay Briseno would not have lived if he’d had his injury, let’s say, 10 or 15 years ago. The technology may not have, have been there to, to save him. So, the wonders of science are, in essence, creating care giving families.

So, in some ways, we are in uncharted waters. And families get no education. I mean, doctors go to school for umpteen years. Nurses go to school for a long period of time. Home care aides get some level of training. Family care givers do not. We are out there on our own trying to figure out. At the same time, we’re dealing with the emotional aspect of it.

There is a reason that doctors don’t operate on their own families. We [caregivers] operate, if you will, on our own families all of the time. So, there is a total disconnect between what society is asking of care giving families and what it is doing to enable us to be as good as we can be at the job of family care giving.

There are huge financial consequences for care giving families, lower incomes and higher out of pocket medical expenses and we are not looking at those issues in any significant way. We are not assessing a family caregiver’s ability to care. What if an 80 year old woman is caring for her 85 year old husband? What shape is she in? What is her level of health and can she really take on this job?

So, there are lots of issues out there that have not at all been addressed, because family care giving has not been thought of as the huge health and social policy issue that it really is.

SUSAN DENTZER: The Briseno family had a choice, which is that they could have elected to have Jay go into a nursing home and, perhaps, spend the rest of his life there. To some degree, they have taken this care giving responsibility and all the burdens upon themselves. What can we say about other families that make that choice and is there a pattern in how families decide to assume the burden of care giving in their homes, as distinct from relying on a nursing home?

SUZANNE MINTZ: Most care is provided at home. Most people want to be home, who, you know, are in need of care and most families want to provide care at home. They want to have as normal a life as possible. They want to give people as high a quality of life as they possibly can. And nursing homes definitely have a role to play. There are times when both the person needing care and the person providing it would be much, much better off if somebody is in a nursing home. But that’s not the answer for most, for most people.

In, in a situation like Jay’s, when he’s in his 20s, nursing homes are not set up to care for people who are in their 20s. Who would his room mates be?

His family would still be a care giving family. They wouldn’t be doing as much day to day care, but they also wouldn’t be in a position to be giving him the kind of moral support and warmth and love on that constant basis that they are by having him at home.

It is a total act of love. It is definitely a sacrifice and, but I’m sure they can’t imagine doing it any other way. They may reach a point when his level of care is so intense from a medical standpoint and they are so exhausted themselves that they can’t do it any other way. But hopefully, they will be looking at what is coming down the pike, looking at their circumstances and evaluating them as they go. The last thing you want is for decisions like that to be made during a time of crisis.

SUSAN DENTZER: The family has told us that their biggest challenge is dealing with the issue of outside care givers to support them in their personal care giving, specifically, turn over a month of care giving staff, the certified nursing assistants, the home care providers, not having somebody on, on the seventh day of the week, but having coverage to some degree the other five and six days. And that this is just an ongoing source of stress to them.

How typical is that?

SUZANNE MINTZ: That is very typical. The people who provide home care services get very low pay. Many of them do not get any health care benefits of their own. You can generally make more money and get better benefits working at McDonalds.

So, people who are taking on this task are doing so for many, many reasons and are–and it’s hard work. It is extraordinarily hard, physical work. It’s hard emotional work, especially if you’re dealing with a patient who might be aggressive or, or angry. And so, if you have an opportunity to better your situation, whether it’s going from one agency to another or getting another job, you’re likely to take it.

Plus your own life probably has so many stressors. If you’ve got your own kids and there’s a snow day, it’s going to impact their ability to be where they need to be. They may not have a car and have to rely on public transportation or, if they have a car, it’s not a 2005 model most likely. And so, they may just run into just, you know, more car problems than the rest of us.

So, there are so many issues involved because we are putting the care of our most vulnerable people in the hands of people who have not had extraordinary amounts of training, who are very, very low paid and don’t generally have a career ladder that they can follow. So, everything is against the ability of a home care aide to really stay on track and stay with a family over the long haul. It’s a very, very big problem and it is one they were going to need to solve because the boomers are coming and more and more people are going to need help.

And it will reach a point where it’s not going to matter how much money you have. There just may not be enough people there to provide the care.

SUSAN DENTZER: What should we, as a nation, be doing about that?

SUZANNE MINTZ: One of the things that we think needs to be done in the short term is the–have the Institute of Medicine prepare a report, IOM studies, bring together the brightest minds in multiple fields to look at the available research and to create an action plan on how we should deal with an issue.

In 1999, the IOM came out with a report called “To Err is Human.” And since then, the whole world of patient safety is turned upside down and we certainly have not solved all the problems of patient safety, but we sure are beginning to pay attention to them. We think that an IOM report would bring the level of attention to the issues of family care giving that are required, because family care giving affects every single sector of society. It affects the work place. It affects community services. It affects schools. It affects the work place. It affects government, of course. It affects health care.

And we need to have a blueprint that looks at all of those components of society and how we are going to bolster families so that they continue, can continue to provide the care that they want to provide and to do it in a way that supports their loved ones and supports themselves. We don’t need to be creating additional patients in the, in the process of helping people who are chronically ill and disabled.

So, that’s something in the short term that we are looking for. The issues are huge in terms of what has to be done to transform our medical system, which is so focused on acute care. And when you’re talking about family care giving, you’re talking about chronic care, which is a very different kind of medicine.

SUSAN DENTZER: One of the benefits that the Briseno family is able to draw on is respite care from the VA. How typical is that and how urgent is the need for respite care and other comparable types of, ways of shoring up families’ ability to deliver care?

SUZANNE MINTZ: The fact that the Briseno family can get several weeks of respite a year is very atypical. Most families don’t get that at all. If you think of family care givers, in a sense, as being self-employed people, then finding time for vacation is something that they need to do on their own. It’s certainly not paid and you need to put in place other care givers, so that you can get, get away.

Some family care givers have a whole level of guilt around the idea of doing anything that they perceive as good for themselves. So, sometimes people are just hesitant to, to take respite even if they could. But it is complicated to put the arrangements in place to, to make it happen and so, not nearly as many people have access to respite care as they should.

The care giving is a really hard job and family care givers need respite and deserve respite. And if you’re own 24 hours a day or even if it’s not 24 hours a day. If you’re on seven days a week, for weeks and weeks on end, it’s going to impact your abilities. And so, it is in everybody’s interest that family care givers get a break.

SUSAN DENTZER: What should people, what should Americans in general think as they see our story about the Briseno family? At one level, of course, they’ll see perhaps the story of the tragedies of war time. On another level, though, they might read this as a larger statement about ongoing transformation of our society, as you said a moment ago. What should be the essential take home message for the American public about stories like that of the Briseno family?

SUZANNE MINTZ: I think the take home message is that, sooner or later, every family in America is going to be a care giving family just by nature of the fact that, we are an aging society. And that we are all in this together. That people need to reach out and help each other. That family care giving is more than a one person job and there are so many ways that friends and family and neighbors can help, whether it’s bringing in a meal every Tuesday for the next month, whether it’s saying to a family, don’t worry about the snow in the winter, don’t worry about cutting your grass in the summer. We will take care of it for you.

There are lots of little things that people can do just to relieve some of the, the pressure and it doesn’t all have to be related to the hands-on care, which obviously many, many people might be hesitant to do. But you can relieve the pressure of all the other activities of life and just by being there, by letting people know you care and are willing to do something, that let’s the family care giver and that entire family know that they’re not alone.

SUSAN DENTZER: And at the governmental level, in terms of things that we will need to think about doing, you mentioned the need for an IOM report. What is the take home message?

SUZANNE MINTZ: The take home message is that, family care givers are underpinning our health care system and need some help in the process. That we are, in essence, we are, in essence, penalizing care giving families these days by not giving them support and assistance.

Family care givers who leave the work force are lessening their ability to provide their own care in the future, because they’ll have lower social security benefits. If they leave the work force, they have less money to pay for many of the things that are not covered by Medicare or private insurance. People can spend $1800 a year just on adult incontinence products. That’s an awful lot of money for what everybody else thinks of as a normal bodily function.

So, there are lots of expenses that aren’t covered. That is an issue that Medicare certainly could, could look at. Doctors are not paid to spend time counseling families and coordinating with their colleagues. And yet, care coordination is one of the most important issues when you’re dealing with chronic illness, because most people have more than one doctor when they’re dealing with chronic illness or disability. And the only continuity is, indeed, that family care giver.

So, we are wasting millions and millions of dollars, because we are not providing good continuity of care and good care coordination and we could be giving better care, improving patients’ safety, saving a lot of money, decreasing the burden on families and patients by just re-looking at what are the priorities in terms of how we care for people with chronic conditions.

So, there are lots of things that can be done, whether it is adding additional benefits, which obviously raises, you know, the issues are there’s not a lot of money around. But we can revamp how we spend existing dollars and help care giving families and patients and all of America in the process.

SUSAN DENTZER: The Briseno family survives by, I think, in large part by believing that Jay’s recovery will continue and that it will be some day complete. And they may even be waiting for divine intervention to accomplish that. How do families in similar situations cope?

SUZANNE MINTZ: I think every family care giver in America wants a miracle. We want to wake up one morning and a loved one is well. And most of us don’t think that’s going to happen, but that gives you some sense of the emotional pain that you’re living with when you love someone whose life has been impacted by an injury, in Jay’s case or, you know, by, by an illness.

And because that doesn’t happen, because each morning you wake up and the illness or disability is there and, indeed, may be worse than it was the, the day before, you try everything that you possibly can to make life as good or as easy as possible. And for some people, that means becoming an advocate, whether it’s an advocate with your loved one’s doctors or an advocate in the activist, political sense.

Other people aren’t as assertive as that and find other ways to fulfill their need to try and bring about change, to try and make things, things better. And everybody does need an advocate. And so, for those people for whom it’s not a natural part of their personality, they need to find other people help stand up for them, because that is a very necessary thing, because the resources are not just easily there.

The health care system is not care giver-friendly. It is not easy to get what you need out of the, out of the system, as it were. Social services are not in plentiful supply and there are waiting lists. And so, care giving families need to be resourceful.

And it is very, very hard to reach out for help, because care giving goes on so much in bedrooms and bathrooms. It’s very private. And Americans are brought up to believe that they should be strong and independent. So, reaching out for help is something that happens over time. You have to get over a whole lot of pride in order to let other people into the intimate parts of your life.

But it is well worth it, because when you know that there are other people there for you, it takes away a lot of fear and it just physically makes things easier.

SUSAN DENTZER: How common is it for a family to experience burn-out?

SUZANNE MINTZ: Oh, it’s very common to experience burn-out. And like with anything else, there are levels of burn out. You can burn-out for a short period of time and then there are people who totally burn-out. And there has been research that shows that family care giving, stressful family care giving can actually age you a whole lot faster, as much as ten years.

So, sometimes I joke and say, hey, I’m a hundred and four, you know.

But they can prove it now at the cellular level, that family care giving, because it is so stressful, can actually do that, can age you and take years off your life. Other studies have shown that among a certain group of family care givers, they actually have a higher mortality rate than the rest of the population. So, family care givers are literally giving their lives to care for their loved ones.

And all we need is a little bit of help to make it easier.

SUSAN DENTZER: Where would you say care giving is on the national agenda at the moment?

SUZANNE MINTZ: Oh, I think care giving is not on the national agenda, unfortunately. We do have the national family care giver support program, which was passed in 2000. It is up for re-authorization right now. It is not likely to get additional funding. So, everybody hopes that, at least, it will stay where, where it is and not be cut. But it needs so much more than it has now. But that is just one program. It is the only program that has care giver in its, in its title.

I think the expectation, especially in policy circles, is that families are doing what they’re supposed to be doing. That we’re supposed to be honoring our fathers and mothers as God and Moses talked about on Mount Sinai.

The family care giving today goes far beyond that, because of the wonders of medical science and so, family care giving has become in many ways part of the whole health care continuum, part of the whole health care process. And if we are asking families to do the jobs that health care professionals used to do, to me, it’s only logical that we should be giving them some assistance in that process. We should be giving them some education to do that. We should not be penalizing them. We should not be putting their own health at risk.

SUSAN DENTZER: And just a moment ago, you mentioned the National Family Care Givers’ support program. We should probably just tick off quickly what the elements of that are and what is inherent in the process now, re-authorizing the program.

SUZANNE MINTZ: The National Family Care Givers’ Support Program provides services to care givers of the elderly. It provides information and referral services. It provides some level of counseling and education. It can provide some respite care as well and in extraordinary circumstance, some direct assistance. It is delivered through area agencies on aging across the country. And so, the larger agencies have gotten bigger pools of money and, obviously, tend to be in a better position to provide more comprehensive services.

So, it is spotty about the level of care that is provided around the country. But it is more than we ever had before. And now it does need to be re-authorized and we are in that budget process as we speak. So, it is important that people hear that it is vital to the care givers of America that, the National Family Care Givers’ Support Program be re-authorized with more funding than it even has right now, because there are so many family care givers who are not getting any help at all. And again, this only helps a certain portion of family care givers.