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QUESTION: What led you to become involved in this area?
MINTZ: Well, I am a care giver. And my husband has multiple sclerosis.
He was diagnosed when he was 31 and I was 28 so we have been dealing
with this for a long time. And my experiences with that, the great emotional
upheaval that it caused and the depression made me realize what an impact
care giving has, and a friend and I were talking one day, she had been
caring for her Mom with Parkinsons. We realized that although our issues
were different, she and I were dealing with a lot of the same things.
And that with not much help out there for us. And so we got angry. And
we decided we were going to try and do something. And that eventually
led to the formation of NFCA.
QUESTION: And that was when?
MINTZ: Six years ago.
QUESTION: And you set as an agenda for yourself, as an organization,
what?
MINTZ: We see ourselves as a voice for family care givers and that
is indeed what they tell us that they would like us to be. An information
source, a source of support and a voice - a voice to the media, a voice
to the general public, a voice to the healthcare system, to the community
at large, to policy maker.
Care givers are so invisible. And we don't want to be invisible any
more. We need people to pay attention to us because we are doing so
much for our loved ones and in turn for this country, and we just need
some help in the process.
QUESTION: Let's talk about what you and all family care givers are doing.
Can you quantify for us the value that family care giving net provides.
MINTZ: Yes. There was a study done a year or so ago that projected
that what family care givers are doing for free is valued at approximately
$196 billion a year. That's such a huge number. It is so much more than
formal home care services, which are about $32 billion, and nursing
home services which are about $83 billion.
So we are literally underpinning the health care system in this country.
We provide over 80 percent of the home care services, over 90 percent
of all long term care services. And with people coming out of the hospital
quicker and sicker, as we say, there is just more and more of a burden
on family.
QUESTION: In fact, that number, when it was revealed, looked to be roughly
equivalent to what was being spent at the time on Medicare.
MINTZ: And yet, Medicare does not help a lot with much of what care
giving is, which is custodial care. There are no Medicare dollars for
custodial care unless it is ancillary to a very specific medical need.
And so a lot of the help that families need just isn't out there, unless
you have the means to buy it yourself in the marketplace.
QUESTION: Some other interesting facts about family care giving, and
indeed care giving in particular at the end of life, emerge from the
recent study published in the New England Journal. We were just talking
about a moment ago, suggesting that women far and away, provide the
preponderance of family care giving.
MINTZ: Oh yes. I mean that's absolutely true. It is a good 75 percent
of care giving is provided by women. We are the traditional care givers.
And so in many ways that is not surprising. But it is getting so much
harder than it used to be because now we have many more two income families
than we ever did before.
We also have families dispersed around the country rather than clustered
around neighborhoods. And so there's not a lot of that typical family
support that we ever got before.
And so it is just making it so much harder for women to take on this
care giving role. And care giving itself is harder because people are
living longer with chronic illness and disabilities. People who perhaps
would have died on the operating table, or, you know, in the ER, are
being saved because of the wonders of medicine. But this in turn creates
care giving families.
But what we haven't done is put in place the social systems that we
need to help care giving families. You know so we have two tracks running,
medicine and healthcare and social services and they are not in the,
at the same speed.
QUESTION: Why do you think that is?
MINTZ: Well, I think there are many reasons. One reason is because
care giving is thought of as a women's issue. I think because care givers
are isolated. In fact that's one of the things that care givers say
is the biggest difficulties of care giving is the sense of isolation.
And so, care givers have not been their own advocates.
Care givers have not been a voice for change and we are like 25 million
separate individuals rather than a voice of 25 million people knocking
on the doors. And care giving itself, I mean especially if you are dealing
with intensive level. Care giving can be so overwhelming. You don't
have a whole lot of energy for fighting battles.
QUESTION: Some of the programs that this group offers are intended very
much to redress that situation. Let's talk a bit about those.
MINTZ: We have a "Share the Care" focus.
QUESTION: Let's talk about that.
MINTZ: Share the Caring is our theme for the National Family Care Givers
Month. It was our theme last year and our theme this year, and I think
it probably should be our theme forever, because it is such a fundamental
message, that care givers need help. And yet, there is not enough of
it out there.
And we can define help in many ways. We can certainly define it in a
public policy way. We can define it in a social services way and we
can also define it, you know, in the very basic sense of people caring
about people and helping each other. Whether it is family or friends
or the faith communities that abound in every community, but there's
lots of kinds of help that families need and it doesn't all have to
be formal help, although that obviously is a significant piece and help
from the healthcare system is obviously an important piece. But I don't
think individuals necessarily recognize how much of a help they can
be.
QUESTION: Give me an example. What's a good way that care givers could
support one another?
MINTZ: Well, it is not so much care givers, care givers support each
other with emotional support and tips on how to do something. But if
you are needing actual help with your care giving situation, it is probably
not likely that another care giver is going to be able to give it to
you because they are doing their own care giving.
But an example of the kind of help that we get, is that my husband has
what they call a personal emergency response system, it is a buzzer
that he wears around his neck when he is alone. So that if something
happens he can press that buzzer and help will come. And the people
who are initially contacted are our neighbors. And so they have agreed
to be there for us if they are home when an emergency call comes in.
They all have keys. And we've used that system. And other times for
instance, if Steven has fallen out of his wheel chair, I can't pick
him up. Just the difference between 105 pound woman and a 140 pound
guy and so I don't hesitate for a moment to call, you know, one of our
neighbors and they don't hesitate to rush over. And you know, in two
minutes they pick him up. And it is just such a comfort knowing that
we have that sort of bond on the street and that people are looking
out for each other. So that's a very simple explanation.
There are more formal ways that people can help as well. There was a
book written some years ago, actually called "Share the Care."
That defined very organized system, that people could put together with
multiple people, and just doing little bits of help whenever they wanted
to. And it calls for a schedule, and it is a wonderful system that has
been replicated. In fact, here in Maryland, one of the Montgomery County
Council women, Betty Ann Kronke has ALS, Lou Gehrig's disease.
And there is a Share the Care group called, Betty Ann's Bunch that helps
out her and her husband and that's a formal way that friends and neighbors
and even just acquaintances can pitch in and do something for a family
that really needs some help.
QUESTION: You also have a program to try to raise awareness of this
in safe communities, which you alluded to earlier.
MINTZ: Yes we do. It's something that started last year. We had done
a survey of the Washington Area Safe Community to find out to what extent
they were reaching out to care giving families. And what we found was
that there didn't seem to be very many formal programs. That if somebody
went to the congregation you got a sense that they might try and help.
But that there weren't very many programs that had a structure or that
people would automatically know about. And to highlight some programs
that we did find, and to begin to raise awareness, we held an interfaith
service downtown at the church of the President, the one just across
from Lafayette Square. And it was so successful everybody who attended
felt so moved, and said it gave them such an awareness about care giver
issues, we decided to expand on that this year and so what we did was
we created, in addition to this interfaith service of protestant, catholic
and jewish one, and put them on disk and made them available through
our National Family Care Giver's Month Outreach effort.
And then we also created a how-to guide to give people ideas of just
the structural things that have to go to to put together a service.
And we created a pamphlet for congregations that list a number of ways
that congregations can reach out and help care giving families.
Some of them feel very simple, absolutely no cost, such as mentioning
the name of the primary care giver as well as the person who is ill
when you are saying prayers for people who are sick. I mean that acknowledges
our existence and it says that we too are hurting in this process. I
mean that is a very simple thing, and the other things are obviously
more complex, a loan closet of equipment that perhaps some people have
used and don't need any more, putting together an entire parish nurse
type of ministry would obviously be a very comprehensive way that congregations
can help. Putting together _____- the care groups when somebody is really
in need is another alternative.
QUESTION: What feedback have you gotten from this effort? Any anecdotes
that have come back from congregations who've taken up these services?
Or taken on some of these programs you've mentioned? Have you...?
MINTZ: Not yet. We haven't gotten the feedback just yet because we
are still within the realms of the month, but I was talking with a woman
today from Easter Seals, who had attended our interfaith service. And
she said she wasn't able to get it out of her head and what she would
like to do is see if Easter Seals working with some other groups in
the Baltimore County area could replicate our service over there.
So, I guess, yeah, there's an anecdote. We had gotten a call from a
church in Washington State and when they had gotten the pamphlet they
were so impressed with it they called back and ordered 400 more of them,
because they wanted to distribute them to other people.
So we know that it touches people. That they recognize some of the issues
of care giving in a very deep and emotional way. If they participate
in a service like this. And we hope it will spur more congregations
to begin to reach out to the care givers within their midst.
QUESTION: As you know, some of the key actors in this piece that we
are putting together are the 14 friends who called, who have put out
a book recently providing advice to people about how to deal with care
giving issues surrounding their elderly parents. Excuse me, I forgot
to turn this off.
[phone ringing]. Do you want to change tape or anything while we're
... We can stay with it? Great.
Ready. Okay. As I was saying the 14 friends play a central role in
the piece we are putting together. How typical is that approach as far
as you know of people coming together, recognizing that there are systemic
issues that all families face and it is time to come to grips with them
and share their advice with the world.
MINTZ: Well, I don't think it is all that common. But I think it is
wonderful that they've written this book because it will get more and
more people to think about it. And in some ways we are at the tip of
the iceberg on this issue. In that people who are baby boomers now are
beginning to feel the impact of their parents age. And people have been
talking about this for a while and certainly those who have been living
it are feeling it, but more and more people are now beginning to have
to deal with it.
And so, I think we will start to see, you know, more people coming up
with creative ideas. We'll see more formal programs being put in place.
There are some really interesting projects being tried around the country
and but the creativity of individuals trying to help individuals sometimes
come up with the best solutions. And getting help from people you know
is more comfortable usually than getting it from strangers. And so when
friends can help out, that's really great.
QUESTION: Some of the themes brought forward in this book may in fact
be familiar to care givers but probably people who haven't spent much
time thinking about the issues find them a bit of a new, they shed new
light on issues. One of them is the women talked about the importance
of attempting to preserve the dignity of your parent or your loved one
who needs care giving, in the face of some just very difficult circumstances
and circumstances that are designed in a way to sort of undermine that
dignity.
How big an issue have you found that to be in your own experience? And
how do care givers in your acquaintance deal with that?
MINTZ: I think it is a very big issue. I mean so much of care giving
goes on behind closed doors. It goes on in in bedrooms and bathrooms
and deals with a lot of personal issues and so the whole question of
dignity is always coming up. And being sensitive to the fact that everybody
wants to preserve their independence as much as they can, is something
that we have to, that you have to take into account.
And often there is a sort of tug of war between the care giver who wants
to help and the person who needs the help. That often that person will
resist the help as long as they can because they either don't want to
admit that they need it, or because of a sense of shame in getting assistance.
And yet the care giver sees the dangers and the care giver feels the
pain of not being able to cure the problem, and so wants to help.
And so that can create a whole lot of communication friction. Certainly
did in our household until we came to an understanding about it. And
you hear people say, when we are dealing with elderly parents, the idea
of role reversal and parenting your parent, and I think we've got to
get rid of that notion.
We are not parenting our parents. They are adults. If they are mentally
competent, they can make their own decisions even if we don't necessarily
like them. And it is a helping role and obviously it used to be that
they were always helping us and so there is some reversal in that sense,
but the idea of parenting your parent, I think is not a good thought.
That it is adults helping adults.
QUESTION: And that's really, anyway a better way to think of it, adults.
The adult daughter helping my adult mother. But not the parent of my
mother.
MINTZ: Correct.
QUESTION: Another issue that the women focused on. Again very important
issue, was helping your parent, or your loved one, make transitions
and the importance of going, in a way even vary on the side of going
more slowly. You mentioned the problem of being able to spot the dangers,
recognizing that the parents desires and the difficulty of making these
transitions is going to be such that often these things are going to
happen more slowly than one expects.
MINTZ: Yes and more slowly than the care givers want. And it is a question
of becoming comfortable with situations, whether it is becoming comfortable
with an increasing disability, whether it is becoming comfortable with
the idea of relocating.
You know, we are beginning to see a reverse location of parents going
to the Florida and other spots like that for retirement. We are now
beginning to see some parents moving back to be close to their adult
children as they are getting on in years. And those kinds of transitions
take time. We have to do a reverse in our heads about what we thought
life was going to be.
And you know, it is a double edged sword. If we let things take their
natural course of people getting comfortable with something they may
then be more comfortable with it when they make the decision but it
may take so long that a crisis occurs in between and so it is a double
edged sword.
QUESTION: Big issue, care giver burn out. A big word describing a lot
of different phenomena whether it is depression or what have you. Let's
talk about that. How big an issue is it?
MINTZ: For intensive level care givers, it is a very big issue. In
a survey we've done of our members, who tend to be care givers who are
providing you know over 21 hours a week of care or so, and have been
at it for quite a few years, 61% reported depression. And I've had clinical
depression three times. So I know it is real.
They also reported high levels of sleeplessness, over half of the people
reported that. Forty one percent I believe it was, reported back problems.
Another 25% you know, talked about headaches or stomach aches. A lot
of stress induced related ailments. You hear stories about care givers
who after the care giving is finished become ill themselves. Develop
cancer or what have you.
I remember a woman writing to us who had been caring for her husband,
he died and shortly thereafter she was rushed to the emergency room
and it turned out she had a total depletion of potassium. And the doctors
asked her "Hadn't she felt tired?" Because that's the primary
symptom and she said, "Of course, I felt tired. But I was a care
giver and I was working and I just expected to be tired." And yet
she almost died because she wasn't taking the time to monitor her own
health.
So care giver burn out is a very big issue. There's, I don't have an
exact statistic and I don't know where it comes from but you hear people,
in care giving, say this very often that the main reason that people
enter a nursing home is care giver burn out.
QUESTION: And in fact it does appear true that is a leading contributor
to people who are in nursing homes.
MINTZ: It is exhausting. It is emotionally exhausting and it can be
physically exhausting. And we don't get vacations. You know, we are
exploited workers in many ways. We talk about respite care as if it
were a luxury. And it is not a luxury. It is very much needed by care
givers.
QUESTION: Let's talk about some things that should be done from the
standpoint of both social services, perhaps on a local level, and then
also more broadly, public policy changes, and public policy that you
see are necessary.
MINTZ: I think the first thing we need to do is recognize that illness
and disability is a family affair. That one person has a clinical diagnosis
of Alzheimers or Cerebral Palsy or MS or whatever it is, but that entire
family and in particular the primary care giver, is also effected. And
so we need to look at more family focused medicine rather than just
patient focused medicine.
I believe we certainly need an overhaul on the Medicare system and I
am hardly the first one to say that. But Medicare was developed in the
60's for people who at the time were in their 60s and dealing with acute
care sorts of problems. Right now it is dealing with people who are
in their 80s and with chronic care problems. And it is really not set
up to do that in a meaningful way. And chronic illnesses and disabilities
require different types of care than acute care and our entire healthcare
system, actually, is modeled on acute care needs.
And so we need to recognize the difference between acute care and chronic
care and put in place programs that support chronic care. Because that's
more than healthcare. It does need the social services. It needs transportation
and it needs home care and other issues like that.
QUESTION: We have a few demonstration projects around the country and
have had for some time that are attempting to do that, social HMOs being
one. That a model to pursue, or are there other models?
MINTZ: Well, you know, I don't think there is any one answer. There
are some very interesting programs out there. The state of California
has a care giver focused program that is actually funded by the State
out of its department of mental health. It is an organization called
The Family Care Giver Alliance. And they actually have resource centers
in various parts of the state, care giver resource centers.
Well, that's a great idea. I've got a friend who lives in Santa Rosa
who uses the resource center that is in that area for respite care.
But I mean that's one state that has a full program like that. And there
are some Medicaid waivers out now that are looking at something called
Cash in counseling. The idea being of instead of predetermining what
services people need, or that a service will pay for two hours of this
and no hours of that, it is giving people the option to manage their
own care and letting them, with guidance decide how those available
dollars should be spent. To me that makes so much sense.
Whatever we come up with needs to be flexible. That is a key word because
each care giving circumstance is so different. You may heal faster than
the guy down the street and you may have exactly the same operation.
We can't legislate how care giving families are going to take care of
themselves. We have to give them the support and the means to do that,
whether it is some financial help, whether it is more and better health
care that deals with chronic conditions, assessments of care givers.
People just assume that family is going to take care of somebody after
there has been a stroke or a heart attack, but nobody assesses the ability
of that family to be able to do what they have to do, or assesses the
help of the care giver. I would like to see, as part of every basic
medical exam, the question asked, "are you a care giver?"
My primary care physician should know that. Because it has implications
for my own health.
QUESTION: Let's talk about a couple of other things that exist currently
and you tell me whether they are sufficient or need to be expanded or
changed. We have the US Administration on Aging, with the area agencies
on aging supposed to be providing a lot of the services you describe.
Sufficient?
MINTZ: No. I mean, obviously, it is great that the agencies are there.
Some of them are stronger than others. And it is certainly a place for
people to start. But it doesn't obviously serve everybody and it can't
do everything. And there was the President's initiative this year for
a family care giver support program, which would have been able to expand
services available to care givers through the agencies. But that hasn't
gone anywhere.
So even though there is a a lot of agreement on the need to support
care givers, I mean, it is mom and apple pie, how can you be against
us? But when it comes to putting the rubber to the road, even though
it was such a small amount of money in the scheme of things, it didn't
happen.
QUESTION: Another initiative put in place several years ago, the family
medical leave act. Enough?
MINTZ: It's a great start. It recognizes that families need help when
babies are born or to care for loved ones, but what's been found is
that for the people who haven't used it but wanted to use it, or didn't
use up all of the 12 weeks that they could have the main reason was
they couldn't afford to. Because it gives us the right to take the time
and have our job there, but it doesn't provide salary and so now there
is actually a movement afoot being led by the National Partnership for
Women and Families to find ways to provide compensated care, so that
more people can take advantage of it.
QUESTION: By way of mandating that, or ?
MINTZ: Well, one of the things that they are looking at is seeing if
monies from the unemployment system can be used. I mean if you were
fired, you would get unemployment insurance, but if you are caring for
a loved one, you don't get anything. And so that's one avenue that is
being explored.
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