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KEN VERDOIA, HOST:
Stay with us, I'm Ken Verdoia, and up next in the and up next in the KUED studios we'll be live to explore local challenges and local support associated with care giving.
We'll also have a phone bank open for you to call to receive a free packet of information on
caring for aging family members what to expect, how to prepare, where to turn.
Stay tuned for more about resources in our communities, next on hand in hand, Utah care giving.
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KEN VERDOIA, HOST:
Welcome back to our studios at KUED for hand in hand Utah care giving. I'm Ken Verdoia.
Just about 15 years ago, as a much younger public television producer, I had the opportunity to spend the better part of a year shaping a documentary on the aging of our state and the nation. And the challenges represented by the needs for more care giving and more support services. Well, when that documentary, "Shades of Gray," was completed, I was pretty confident that I was about as well informed as anyone could be on aging and care giving.
And then… then I was forced to confront how little I actually knew.
My father became ill, and was forced into a difficult and achingly limited medical retirement
with endless complications, which eroded the emotional and physical health of my mom.
Care giving became part of every waking hour for me for the next ten years. I was more tired, more confused, and more frustrated than I ever thought one person could be.
But I also had priceless moments, met many good and decent people, and when it was over realized I'd experienced something as profound and essential to life as the birth of my children.
Now, you or someone you know is probably dealing with issues of care giving right now. Tonight KUED, along with its partners, AARP Utah, the Utah coalition for care giver support, the Utah commission on aging, and Salt Lake County aging services, want to open the door to resources to help you more effectively address your role as a care giver, or a future care giver.
During the course of our show, a phone number will appear on the bottom of your screen, you see it right there. Feel free to call 585 5465. That's 585 link, at any time during the next half hour,to request a free packet of information, or you can visit our web site at any time,
KUED.org/caregiving.
Joining me now is one of the first experts I encountered many years ago when I took up the subject of aging in society, and the challenges and opportunities that are part of this profound shift in the American profile.
Dale Lund is a professor of gerontology and sociology at the University of Utah, he's been doing research on the topic of family care giving for 25 years.
Right next to Dale is Nancy Stallings, she's a program manager for the care giver support program at Salt Lake County aging services. That program offers information, classes, support, resources, and services to care givers of frail older adults. Nancy, Dale, thanks for being here.
I started with my own confession, the bottom line is, I'm like so many millions of Americans. I walked into care giving absolutely unprepared, without having had what they call
"the conversation." What is "the conversation," Dale? And why is it so important?
DALE LUND:
Well, it's important because families usually don't have that until there's a crisis, and then
emotions are high, and there's not as good of opportunities for the entire family to share their
opinions.There's a lot of opportunity to have discussions that we just simply don't take advantage of, and we hope that this program will, you know, help families identify, this is a particular time, and this program is identifying the issues that they probably should be discussing.
KEN VERDOIA, HOST:
Nancy, I guess I confessed that mine was care giving by crisis.
NANCY STALLINGS:
Right.
KEN VERDOIA, HOST:
In default, in each and every circumstance a crisis forged, or forced a conversation. But if we could turn this around and say, what would be a better timing to have a conversation about care giving? When is a better time for that to occur?
NANCY STALLINGS, MAM:
Well, before you even really get into the crisis. Maybe when you start to think, ah, my parents
are getting older, or my parents' health is starting to be more of an issue. And just think
about all the what ifs, you know. It's the Garry Larsen cartoon with the crisis clinic going over
the falls, and as you say, that's really not the time. So thinking about, what would I do if my
parents needed to move to a different house? If they could no longer do the stairs?
What would I do if I had to provide personal care? What would I do if I always had to take my
parents to the doctor because they no longer drive? How will I manage a job and care giving?
And think about the possible scenarios, and then start looking. There are so many resources
available, and just that what if. You know, we do really good jobs at shopping for cars, or
planning for weddings, and some of those things. Planning ahead really, really makes good sense.
KEN VERDOIA, HOST:
And often times it can be characterized, unfortunately, as somehow hastening the inevitable, that you're trying to will this upon a situation. Dale, if you could give a piece of advice based on 25 years in dealing and studying so many people in the care giving situation, if you could give a piece of advice to each person out there, saying, "I'm right at the tip of this iceberg,"
what would you recommend to them?
DALE LUND, PH.D.:
Well, there's several things. One is to be aware that you're about to make a lot of sacrifices.
You need to identify people who can help you do assessments of how this care giving is playing out in your life, and what impact it's having on you. Because many care givers get so directly involved in managing all the different tasks that they have to perform that they lose sight of how it's impacting other relationships, how it's impacting their work.
KEN VERDOIA, HOST:
Great point. It can be at times like quick sand.
DALE LUND, PH.D.:
Exactly.
KEN VERDOIA, HOST:
I used to liken it as treading water, that I was treading water as fast as I can, but that wasn't
really true, because I could never see the side of the pool. It was really like quick sand, the
more I tried, the more effort I made, it seemed the deeper I sank, and the less control I had.
And that was very frustrating.
DALE LUND, PH.D.: RIGHT.
That's where the role of other people come into play, because you might be sinking and you're unaware of the fact that you are sinking as deep as you are.
So one other piece of advice I'd give is because of the sacrifices you make, and the fact that you may not be aware of them, you need to have other people be willing to let you know how these, you know, decisions that you make are playing out in your life.
KEN VERDOIA, HOST:
You're almost talking like a reality check.
DALE LUND, PH.D.:
It is, yeah. It's very much a reality check. And you need to be prepared that the decisions,
that what you do is a constantly changing target. I know in discussions that we've had of your
care giving situation, that it plays out very differently over a period of time.
So the types of help that Nancy provides, and what she's aware of, are needed at different times, different services for different situations.
KEN VERDOIA, HOST:
And that's right, one size doesn't fit all, does it? I mean it's a very individualized experience.
NANCY STALLINGS, MAM:
It does. We all experience it differently, and it does change, as you say. Some wise person once said, "when one is sick, two need help." And the advice that I would add to yours is that it's not, it really is not possible, or realistic to think that one person is going to be able to
manage this alone.
KEN VERDOIA, HOST:
Well let's characterize who that one person is. Because there have been some deeply held
stereotypes about care giving. And invariably the person that steps up, I don't know if they step up as much as they have it all dropped on them, is the woman.
NANCY STALLINGS, MAM:
Typically that's true. A middle aged daughter, female, often working part time, or full time
outside the home, you know, maybe children, grandchildren, job responsibilities, and sometimes these elections in families can be very interesting based on the family dynamics.
KEN VERDOIA, HOST:
I've seen, since I've had the opportunity to experience care giving, I've had the opportunity to
talk in certain care giving support circles, as well. And I've been amused at times how the
decision was made. Well, since you're the woman, you're better at care giving, therefore you will take the lead role. Which is fine if you're the male, because that gives you the opportunity to go out and golf while your sister steps up and deals with most of the care and meeting the needs of mom and dad. But that is changing also, over time, as well, isn't it, Dale? Aren't we seeing a greater evolution of a male role in care giving, as well?
DALE LUND, PH.D.:
Oh, there is. And it's a myth that men can't be good and effective care givers. It just isn't
appropriate to use that as a cop out, or like you have a waiver to be exempt from it. Because
even in our own local community there are some very prominent people who speak at conferences, and they're males, and they're the care givers, and they're doing extremely well.
KEN VERDOIA, HOST:
Just a reminder, as we go through our discussion today, at the bottom of the screen remember to call in for those free packets of information. And let me just recommend to you, in addition to all the local resources that will be in that packet, you'll also receive a national care giving hand book, which was prepared in conjunction with the national documentary.
This is an exceptionally good resource. It asks you the very pertinent questions that I wish I would have asked myself back then, which I had to learn from experience. So I highly recommend this packet of information.
Remember, there is no obligation, there is no financial commitment whatsoever.
We're delighted to join with our partnering agencies to send this to you, whether you're in a
care giving situation right now, or you think you might be one in five years or ten years, call
for that packet of information. Believe me, it will serve you well. Tell me about the sandwich, Nancy.
NANCY STALLINGS, MAM:
Well I think sandwich, you know, we've often thought, well, caring for grandparents, and now it's parents, older, older parents, we're living longer so we have more generations alive. And
sandwich is, I'm in the middle, I'm the peanut butter and I may have grandchildren or children that I'm care giving for in some degree, and I also may have parents, spouses, siblings, partners, friends, because we're in tribes now, that we're not just living with our families of origin.
So we're in the middle, and we're caring up and caring down the line. And each one of those care giving situations has a whole different need, a whole different list of resources. And demands, as well as the rewards.
You know, I think care givers do this because, well, they feel the obligation, they love, they
feel whatever it is that motivates them to do this. But I think a lot of times we overlook the
gifts, and you hinted about that. You know, the gifts, the things that we learn about our
parents, about our care receivers, as well as ourselves when we're going through this.
KEN VERDOIA, HOST:
And Dale, we're talking about, broadly, about the need for greater awareness.
But this is a compelling societal issue. This isn't just an individual challenge, it's really
something our whole society is facing, is it not?
DALE LUND, PH.D.:
Right. In fact every aspect of our society probably has something to offer in terms of solutions for the care giving problems. There are work place opportunities for employers to make arrangements through their human resource offices to provide services for their employed care givers, there's opportunities for religious organizations to provide services, such as respite for the care givers.
Government certainly has an obligation to do what's needed also in terms of funding and
development of federal policy. So every aspect of our society probably has something that they should be offering.
KEN VERDOIA, HOST:
Correct me if I'm wrong, and I know you will, but one piece of information that I was reading
just before we came on air, in the year 2000, approximately 39 million older Americans, elder
Americans were in need of care. By the year 2050 they expect that to more than double, to
80 million. Is that reasonable to assume that this is something that families alone can address the needs of, or is this going to take a coordinated response, the likes of which we still have to fashion?
DALE LUND, PH.D.:
Most the research indicates that about 80 percent of all the care giving that takes place is done by families as it is. One of the concerns that I have in our research is that if we continue to have policies that expect families to do even more and more, there are a lot of damages that care givers experience that may be long term and may be never correctable. And we need to factor in those kinds of impacts when we expect families to go beyond even the 80 percent.
KEN VERDOIA, HOST:
Now, Nancy, let's assume, and I know this isn't a great assumption, because right out there,
right now, there's someone who's looking at this program, and they just started walking down
this pathway. If you could say, okay, take a deep breath, and do one or two things, what would you tell that person right now who's just beginning this progression down the path of providing care for an elderly family member or friend?
NANCY STALLINGS, MAM:
The first thing is to realize you're not alone. We're all, you know, probably everyone that's
watching this is a care giver, or will be, or will need a care giver, or has been one.
So realize you're not alone. And then give yourself permission to go out and look for resources, to start talking to people, and start asking and saying, "I need help. I need to know more.
I need to understand more. I need to know where the resources are. I need some ideas about having these conversations.
And I need to give myself permission to go through this and to say, it's okay to be stressed." This is a very challenging, even in the best of circumstances, it's very challenging. So give
yourself permission, and find the help, find the others who are doing this. Because the best
advice is also from other people who are doing this. It's not like a college course. This is a
life experience, and finding other people who are in this are some of the best ways to get
through it.
DALE LUND, PH.D.:
I'd agree with Nancy completely in terms, I think one of the key words is forming partnerships to help contribute to the solutions of care giving. One thing we haven't mentioned, too, is the need for respite services.
NANCY STALLINGS, MAM:
That's right.
DALE LUND, PH.D.:
Our research has clearly led to the fact that respite's probably the single greatest service
need that care givers have. Respite simply means having some time away. There are many
care givers who are dedicated to being the heroic care giver, and that concerns me because as a hero they don't want to acknowledge that they need help or that they need time away.
KEN VERDOIA, HOST:
And so many times you see the care giver going down themselves, because they've sacrificed so completely to provide the care.
DALE LUND, PH.D.:
Right.
KEN VERDOIA, HOST:
Dale Lund, Nancy Stallings, thank you so much for your time and your contributions this evening. Once again, for a free packet of information on care giving and resources throughout the state, or to arrange to participate in one of four conferences that KUED and our partners will be staging in Utah on care giving and support, please call 585 5465 at any time, or visit our web site at KUED.org/caregiving.
So what does the future hold for Utah's aging population? Well, one University of Utah professor says this state, which views itself as very young and very homogenous, faces some interesting and even surprising projections.
PAMELA PERLICH, PH.D.:
Our population is becoming older, browner, for lack of a better word, more culturally diverse,
more religiously diverse, more linguistically diverse, so our aging population is becoming much more diverse as well.
KEN VERDOIA, HOST:
As an economist and demographer, Dr. Pamela Perlich dedicates her career to understanding the changing face of Utah's population, and how those changes can redefine a sense of place. Americans have been alerted to the graying of the nation for more than 20 years, and Utah is not immune.
PAMELA PERLICH, PH.D.:
We have this idea that Utah is forever young, but in reality what's going to happen very soon
is that the number of school age kids in the state are going to be outnumbered by the number of people 60 and older. Now, we think that that's going to occur at the state level probably about 2035 or so, but here in the county, our capital county, we're looking in 20 years from now, about 2028, 2030, there and abouts, where there will actually be more people over the age of 60 in the county than what there will be school age kids.
KEN VERDOIA, HOST:
Simply stated, do the math. At one time our nation had six, seven, or even eight workers for each retired individual. But nationally, and in Utah, that ratio has withered.
PAMELA PERLICH, PH.D.:
One of the ways the demographers like to show population distribution is with a population pyramid, and these population pyramids visually represent the age and sex distribution.
On the left side of the pyramid are the males, and on the right side are the females, and they're in five year age groups.
So when we start out with this 1870 pyramid, the thing that really strikes us is how fat the
bottom is, when there were lots of kids per capita. But as we allow this dynamic pyramid to run its course, then we see by 2050 the numbers of people in the younger age groups relative to the older age groups declined, and we see that bar on the top just expand. That's the aging of the population, that's that part of the population being a greater and greater share. By 2050 we should be approaching about a fifth of our population over the age of 65.
KEN VERDOIA, HOST:
An aging population creates many potential challenges for a state like Utah.
It can impact our plans for building schools, for example. But a more profound impact may be found in how individual lives are impacted. People of working age will feel pressure, financially and emotionally. They will be sandwiched.
On one hand trying to raise their children, on the other trying to provide care giving to elderly
parents.
PAMELA PERLICH, PH.D.:
The sandwich generation is really a sort of common parlance for this dependency ratio, this idea that there are fewer working age people per non working age people, both youth and elders. And that here in Utah the number of youth per working age person is going to stay pretty constant.
But into the future the number of elders per working age people are going to increase quite
dramatically. So the stress on that sandwich generation, which is actually a different group of
people over the years, many generations will experience this sandwiching That that burden will be higher and will be greater as time goes on.
KEN VERDOIA, HOST:
So operators are standing by. The phone number for the resource packet, 585 5465, or 585 LINK.
You can ask for details about the upcoming care giving conferences near you, as well.
Now I spoke of my own experience when the documentary blurred into the actual story line of my life. A good friend, Senator Patricia Jones, knows how public policy can seem to resonate with personal experience. Senator Jones has sponsored legislation creating Utah's commission on aging.
She was invited to participate in the White House conference on aging, but she's also a daughter, and knows what it means to provide support for her parents.
Allen Ormsby is director of the Utah division of aging and adult services, and among his many duties, Allen's agency provides services to Utah's seniors to remain independent in their own homes. Prior to his appointment as director he was a developer of legal services for the state of Utah.
And Senator Jones, let me come to you. What's the greatest realization you've had, as an astute, capable state legislator, and also a care giver, what is the first thing you've learned about yourself in care giving?
SEN. PATRICIA JONES:
The first thing I've learned is there are many services out there. We just need to know where to look for them. And I have asked many people, have you ever heard of 211? Very few people have ever heard of 211, including myself, until I was two years into the legislative process, and now I know it's a great resource to find information.
KEN VERDOIA, HOST:
So Allen, this is probably kind of a mantra that gets chanted to you time and time again,
"If only I had known." But as you look at it, as we try to sort out this difficult, and I'll
use the word difficult relationship between private, personal responsibility, and public agency
responsibility, how do we divvy up that load? Is there a way to say there's a formula that works?
ALLEN ORMSBY, J.D.:
I don't know that there's any specific formula that works. Care giving is such an individual
thing, and people need help at various stages along the care giving spectrum. I mean a care giver may start out taking care of their grandparent or taking care of their parent, and be doing just great. And then the burdens seem to get worse and worse, and maybe the health of the care
receiver is getting worse and worse.
And the sad part about that is, once those crises start to happen, the care giver finds themselves in a situation where they don't have time to even go and look for help. And so then things really start to fall apart quickly. So there's probably no one set answer, other than people need to know about the resources in advance, and have those difficult conversations with their parents or their grandparents, with even their spouse, well in advance.
KEN VERDOIA, HOST:
Senator, in a family oriented state such as Utah, is there perhaps a bit of institutional
reticence to say, oh, it's not appropriate to go outside of the family, or we shouldn't be
putting this responsibility on public agencies? Have you heard that voiced from time to time?
SEN. PATRICIA JONES:
I have, and it's both in the legislature and with families here.
KEN VERDOIA, HOST:
It does.
SEN. PATRICIA JONES:
It's probably the biggest barrier, is this reluctance to call and have people help you, whether
it's government or your neighbor or your church, or whatever it is. It's this pride that we have.
And oftentimes we need that kind of help.
So I know a year ago, right now, we had to gather my family together, because my father will be 90 this year, and my mother's 85, and we had some decisions to make about his care. He needed to either go into assisted living or stay at home.
You know, what do we do with him? The problem is, or the challenge, is that I'm the only child here. I have four siblings who live from Florida to Hawai'i, Texas and Washington. And so they all flew in and we all sat down and had our conversation.
KEN VERDOIA, HOST:
It's a much different relationship, though, when someone flies in with the greatest of intention, and participates in problem solving, but then flies out.
SEN. PATRICIA JONES:
Yes.
KEN VERDOIA, HOST:
And then the resident daughter stays on guard, mans the wall, if you will, against the challenges to the health and well being of the parents. It becomes a weighty responsibility, doesn't it?
SEN. PATRICIA JONES:
It does. Luckily my mother is, her health is relatively good. But nevertheless, it does fall on
her, and I'm a backup.
But we have had tremendous help from the county. You know, they put in a walk way for my father, a ramp so that he can travel in his jazzy up to his home, and it has made a tremendous difference. In fact, I think that and the grab bars that they put in his home kept had in his home. And with the good care of my mother, primarily.
KEN:
Allen, how do we equalize, in a state such as Utah, which has a dynamic urban population, yet a very large rural base, that also has many elderly people in need, how do we rise to the occasion
of meeting rural elder needs when we've got such an urban based population?
ALLEN ORMSBY, J.D.:
Yeah, that's a challenge that we wrestle with all the time, that issue of, you know, resources
for the urban versus the rural areas. And I will say that I think our state has done a very good
job of finding ways to get resources out into the communities. We have twelve area agencies on aging in this state, and of course the majority of those area agencies on aging represent rural communities. And the types of services that you'd find in Salt Lake, or Davis county are also
available in the outlying areas of the state.
It really is a remarkable thing, and just to build on something Senator Jones said, there are a
lot of our seniors who don't have family, who don't have anyone.
Maybe all of their children who have moved away, or maybe they didn't have children. And I think that's one of the important roles of government and public services, is to find those individuals who don't have community, and don't have family, and fulfill those needs for them.
KEN VERDOIA, HOST:
One of the most gratifying aspects of my own experience was talking to someone from the state, or an area aging agency, who translated for me. Because I did not understand the language. When I
went into this, I didn't know the difference between Medicare and Medicaid. And this is 20 years
of a career in journalism, but in a practical sense, I didn't know the practical implications of
sorting through how to provide for health insurance coverage of an elderly parent, and how to ensure that their gaps were covered.
So I would assume that this is one of the most frequently called upon services that we can provide in an agency just to help people basically understand the language of the system.
ALLEN ORMSBY, J.D.:
Absolutely. And care giving, our care giving support programs, they're very cost effective.
They're very, very inexpensive when you take a look at, you know, comparing them, say, to the cost of skilled nursing care.
We can provide information, we can provide a very small amount of services, like the grab bars, like the ramps, that help people stay independent in their home as long as possible, and as long as it's safe. That's a real cost savings to the state, and it honors the dignity that our seniors want. You talk to every senior, and they'd like to stay in their own home if it's possible, and where it's safe, we think that's the right place for them to be.
KEN VERDOIA, HOST:
Now let me, in a responsible sense, address an issue. This state has such a fundamental
commitment to its families and its children, and providing a safe and learning environment for
them.
We've just come out of a legislative session where there's been a great emphasis on public ed., an indication as a manifestation of that love for the next generation. And yet we have this exponentially growing senior population that needs service support as well.
As a state, we know how families can get pulled and sandwiched, but is the state itself being
sandwiched right now, as we see this rapidly changing face of Utah as a big family?
SEN. PATRICIA JONES:
I don't think that some of our lawmakers understand the gray tsunami that is about to hit us.
And it was very interesting, when I was sponsoring the commission on aging a couple of years ago, the lack of information, and lack of knowledge about what will hit us, and is starting to hit us
right now. I think it will come, it has to come, because we have to deal with it, because it
will be upon us, and is upon us right now.
But what I have found is there's a lack of interest, perhaps, in funding some of the programs,
these very programs that I have just talked about in helping my own father, if we did that it
would save us thousands of dollars state wide, because it would keep people in their homes,
which is where they want to be.
KEN VERDOIA, HOST:
And Allen, please take that up. Because this notion of home care with a little bit of support as
opposed to institutionalized or nursing care, long term assisted care, it's the difference of
night and day, I would imagine, in terms of expense.
ALLEN ORMSBY, J.D.:
It is, it really is. And you know, I don't want to say that there isn't a role for institution
based care. There certainly is.
When people get sick enough that they, you know, you can't recreate an emergency room in a person's home. But for many of our seniors, they can either delay or altogether avoid skilled nursing care if we can provide just a limited number of services. I liken it to a buffet. You know, if you're hungry and you want all the services that are available on a buffet, that's great for you.
But if all you want is a little bit of cottage cheese and fruit, then you know, go and get that
one thing. And that's the services that we provide. We provide those very limited services that just are enough to help people stay in their own home.
KEN VERDOIA, HOST:
So a person sitting at home right now, as we talked about earlier, turning to this program, and
saying, "I'm right there," what would you say is the greatest thing, or the most important thing
they can access right now by contacting either the state or their local six county, whatever it might be, area on aging? What should they first look for?
ALLEN ORMSBY, J.D.:
I think they should first ask themselves, what are the needs that I have? And try and think it
through in a very comprehensive way. Because oftentimes we'll hear people call up and say, you know, I need Meals on Wheels. But really they need meals, they need transportation, they need a ramp built into their home. So think through those issues in a more comprehensive way and ask themselves, you know, what really are my needs?
And then think about ways that they can supplement the existing, informal network that they have.
Because that informal network is incredibly important. And we never want to replace that.
We just want to supplement it and help where we can.
KEN VERDOIA, HOST:
Allen Ormsby, director of the division of aging and adult services, and state
Senator Patricia Jones, thank you both very much for joining us tonight.
Remember, our operators are still available to take your call for the free packet of care
giving information.
You can reach us at 585 LINK 585 5465.
That's for the resource packet with absolutely no obligation or strings attached.
A pamphlet on its own cannot change your world, but a ray of light, or a guiding hand in those moments of uncertainty and challenge can make a world of difference in your life and the lives of others.
Thanks to AARP Utah, the Utah commission on aging, the Utah coalition for care giver support, and Salt Lake County aging services, for their partnership tonight, and for KUED.
I'm Ken Verdoia, good evening.
