Caring for Mom & Dad

MERYL STREEP: America is facing a new reality.

Soon, the old will outnumber the young, and most will live longer than ever before.

Hello?

Who's calling?

I'm still alive!

WOMAN (on phone): Thank God!

STREEP: Who will care for them when they are no longer able to care for themselves?

ANTHONY: I had given up my whole life.

My life had become my mom, totally.

STREEP: Today, family caregivers provide 90% of the assistance, even while they struggle to balance jobs and families.

BREANNA: If I am at work but my mind is back home, trying to figure out if my mom is safe, I won't be performing at as high a level.

STREEP: And most struggle to afford caring for their parents.

JANE GROSS: Your mother or your father better have a gazillion dollars, or by the time this is over, Mom and Dad are broke, and so are you.

STREEP: With this aging population, how will we adapt as a nation?

LAURIE PETRIE: People don't need open heart surgery when they're 95.

Medicare will pay for it.

But Medicare won't pay for a bath or a meal or a trip to the doctor.

STREEP: What are the trade-offs facing working caregivers and their employers?

AI-JEN POO: To be able to create the kind of economy that thrives in the 21st century, employers are going to have to account for family.

STREEP: What are the lessons and hopes for a new way of aging at home, surrounded by family?

ANTHONY: This is the building.

This is the door I went through for many...

This is where it all started at.

This is where they brought her to that night.

She had an apartment, and the apartment complex manager called me and said, "We're starting to find your mom just in the parking lot, and she doesn't know where her apartment's at."

And I was like, "My mom?"

She would have got off on the bus stop on the corner of the street.

She'd have walked to... she'd have got off right here and walked to the corner, and I had to go around the block, and then she started running between houses.

She just started running from me between all different houses and stuff.

That's when I had to call the police.

That was a bad night, December 24, 2009.

That's when this journey began.

STREEP: Here in Minneapolis, when Odester Robinson started to show signs of Alzheimer's, it was Anthony, her middle child, who came to her aid.

ANTHONY: When all this happened, I knew I had to be that one, the protector of Momma.

I knew nobody else would do it.

Wouldn't nobody do it like me, wouldn't nobody care for Momma like me because it had to be... caring for Momma had to be 110% because that's what she gave.

So I felt that it was my duty and my right.

It's her turn now.

"You raised us, now you're in a position...

It's my turn."

STREEP: Soon, however, Anthony asked his wife, Donna, to quit her job and help care for his mother.

To make up for the lost income, he increased his hours at work.

He now admits he also wanted to escape his mother's decline.

That was too much for me because I was always used to seeing her a strong woman.

And to see her go from a strong woman to a childlike mind, it was devastating to me.

My mom had three children, and none of the children are doing anything, but Donna's taking on their role, and here I am putting it all on her.

So it was a nightmare for her.

STREEP: Anthony's wife, Donna, asked for a separation.

ANTHONY: I just couldn't handle the part with my mom and that, so I threw my marriage away.

Not that Donna did anything wrong, but because of my stupidity, I threw it away, and I prayed every day, "God, just give me a second chance."

I went into my garage, sat in my car with my pistol and got ready to pull the trigger.

It was that close, that close.

I just wanted to end it.

STREEP: Breanna was only in her 20s when she was forced to choose between caring for her parents or pursuing her career.

BREANNA: I was very shocked when I got the phone call that my mom had Alzheimer's disease.

And I didn't think that that was ever a diagnosis our family would be faced with.

I was living in New York City and I was very focused on my career, and I was working on a political campaign, so when that campaign ended, I needed to figure out what was going to be my next move.

STREEP: Breanna had dreams of pursuing a political career at the national level, but her mother's illness interrupted her plans.

She is not alone.

Nearly 70% of working caregivers caring for older adults confront work-related disruptions, including backing off a career, working part-time, or quitting altogether.

BREANNA: It felt like I was closing a door in front of my own face, and I've worked years and years in my career to make sure that I'm opening all the right doors.

And to close that door where it once was a dream was a really tough day for me.

And I think that was the day that it hit me so far the hardest.

I had to say no to something that I've worked this hard for, for this long, so that I could be back with my family.

(cork pops) (cheering) BRENT OLSON: Friends, family, we thank you for coming.

And God bless this woman.

She's my heart and soul.

BREANNA: Not long after her diagnosis, my dad looked at me, and I'll never forget the moment.

He said, "You know, I knew in time "that God was going to take her body "and she wasn't going to look the same "and things were going to be a little bit different.

But why did he have to take her mind?"

Now, can you get up in here?

Careful.

BRENT OLSON (voice breaking): When we had our first granddaughter born, and I'm thinking, "Man, we've got it.

We've got a granddaughter."

And financially, we were, you know... we were doing, you know... we were okay.

We had, I called it... it was a seven-year plan.

STREEP: With their golden years in sight, the Olsons were on top of the world.

Until they weren't.

In a matter of months, Chris was diagnosed with Alzheimer's and Brent with prostate cancer.

Around the time of her diagnosis, Chris lost her full-time job.

Oh, it hit us hard.

I made a good salary.

I had a good salary.

And that's gone.

I'm worried about keeping the house.

We're running scared, feeling our way, just trying to... We don't know what to do.

You know, figure out... trying to figure out life a little bit.

STREEP: Concern for Brent's health and the loss of Chris's income has added to the family's already heavy burden.

BREANNA: We're a middle-class family, we don't come from a lot of wealth, and so those decisions, just, you know, paying bills, making ends meet now, it's not something that we take for granted and that we actually take lightly.

They're supposed to be retiring, and they're supposed to be enjoying these years together as a very happily married couple of 45 years of wedding bliss.

And instead, my dad is still working, he's probably never going to be able to retire.

And my mom wishes that she could still be working, but is forced home and is lonely.

I struggle on a day-to-day basis to say, "How much can I give, how much can I sacrifice, and how much can I be selfish?"

So as I'm thinking through the decisions in my life, to plan for that next promotion, to plan for when I want to build and start a family, and to plan for all those is all under this cloud of "My mom has Alzheimer's disease," and I don't know where it's gonna go and I don't know how quickly it's gonna happen, but I know I need to be there for her.

STREEP: What caregivers like Breanna will come to realize is that caregiving averages four years.

For an Alzheimer's patient, it is four to eight years and can last as long as 20.

And the rate of Alzheimer's is expected to triple by 2050.

ALICIA: There was a time that I used a tortilla roller and a marble slab to crush my mom's medicines.

STREEP: Five years ago, Alicia's mother went into the hospital for heart surgery.

Within 24 hours, she suffered a massive stroke which left her partially paralyzed, incontinent, unable to speak or eat.

ALICIA: When I first brought her home, I didn't realize how often I needed to give her water.

I was only giving her water when I was giving her her meds, and then she wound up getting dehydrated.

That was a lesson learned.

STREEP: Almost overnight, Alicia was thrust into caring for her mother full-time.

Though deemed "informal caregivers" by the government, nearly half of family caregivers, like Alicia, perform medical services traditionally reserved for a nurse.

ALICIA: I have the bags when we change my mom.

Those are her overnight things that we purchased.

These are the sponges that go underneath her feeding tube.

But I needed to call the doctor, get a thing, and they're $7.50 a box, so I just buy them.

Insurance covers six syringes a month.

We get four packs of disposable pads.

Gloves.

See?

A lot of stuff.

My mom's feeding is covered by insurance.

We hook it up, we prime it, we put it in my mom's tube, and she gets her feeding overnight.

There are times I wonder how much longer I'm gonna be able to do this.

But then I have to step back and remember that I am very fortunate that I am able to take care of them at home.

They're in their house, they're here, it's the same family dynamic that we've always had.

We've been in this house for 20 years.

And we're together, we're family.

She's home.

Huh, gorgeous?

STREEP: Alicia found help at this crucial time from medical advocate Ana Diaz, who has 130 clients in her care.

Ana triages her cases and visits Latino caregivers and their families in their homes.

She's the eyes and ears of this aging St. Paul community.

ANA: How are you?

Alicia's case has a little bit of everything.

I knew what she needed.

It is confusing because the system changed, the laws changed, the rules changed, everything changed, and you have to keep up.

I'm the nightmare for the county and for the HMOs, the nursing homes, because I'm there.

I show up.

When some of my seniors go to transitional care, I show up every day if they don't have a family member.

And even if they do, I show up.

Buenos dias!

Good morning!

STREEP: Ana, a geriatric angel to many, helps working caregivers by taking their family members to doctor's appointments.

They are people who if they miss work, if they don't show up, they're gonna be fired, they're gonna lose the only income that they have.

ALICIA: I've went plenty of times to my bosses just crying because I felt that I was doing them a disservice because I have a lot of work to catch up on.

I am responsible for the care of my mom.

I know what's going on.

I feel that that's kind of my empowerment because she...

I need to take care of her.

STREEP: The number of working Americans who also care for their aging parents is on the rise.

The majority of them are women, often "sandwich moms," squeezed between raising a family, holding down a full-time job, and caring for their parents.

It is a daily juggling act.

Thank you for jumping in and pinch-hitting.

I appreciate it.

See you, bye-bye.

MARY ELLEN: It's coming at you from all ends.

You have a full life, it's wonderful, but there are a lot of days when you might want to trade it.

STREEP: Women often don't realize they've taken on the added responsibility of caregiving until it mounts up.

Mary Ellen McCartney, chief learning officer at Gundersen Health System in La Crosse, Wisconsin, was conducting a survey of her employees when it all suddenly hit too close to home.

MARY ELLEN: The questions that Gallup asked help caregivers self-identify, and that there is a big issue of caregivers even identifying that they, in fact, do that caregiving.

And what was ironic is I was caregiving probably 20 hours a month and didn't even identify myself when I took the survey as a caregiver.

STREEP: Mary Ellen's caregiving began ten years ago with casual trips to the grocery store or pharmacy, but increased to 25 hours a week when her late father needed dialysis three times a week.

MARY ELLEN: Every day, it was just sort of like, "Is it going to work today?"

It is such a tough road.

In those last six or eight months, you know, he would say, ,"This is getting really hard."

STREEP: Trying to fit everything in, Mary Ellen would sometimes wake up at 4:00 a.m. to keep up with her kids' activities.

Oh, your peas are coming up.

Oh, look at that, they're coming up well.

STREEP: Trying to be a good mother and a good daughter prevented her from taking care of herself.

MARY ELLEN: The thing about caregiving: it's not just the caregiving, it's the other components of life with the caregiving.

I remember at one point, I had a problem with my tooth, so I went to the dentist and they said, "Well, you need a root canal."

And then they told me I need to come back two more times to tend to the root canal.

And I just said, "Pull it.

"I don't have time to have two more appointments for the root canal."

It just wasn't a priority to be spending a lot of time on what my needs were.

STREEP: The time Mary Ellen has devoted to caring for her parents is beginning to rival the time she spent raising her kids.

Every day on her way home from work, she checks in on her mother, who has dementia and now lives in a nursing home.

Her role as a caregiver is much easier now, but when she took over her parents' finances, it was hard for her father to accept the fact that things needed to change.

MARY ELLEN: My dad was always really meticulous with his finances.

And so I remember him sitting at the bar kind of over my shoulder watching me do his finances the first time, and I was off in balancing the checkbook two cents.

And he was kinda like, you know, "Where's that two cents?

You gotta find that."

So I pulled out two cents and I put it down and we laughed, and I said, "Dad, you're gonna have to let go, because this is as good as it's gonna get."

So I mean, I think about for them, it's all the things that they have to give up.

It hurts me to sit down, so I may scream with pain.

Ouch!

Hurt me terribly.

Hi, Grandma!

JANET: Tell him to come in!

Both of you come in immediately!

STREEP: At 100 years of age, Janet Wolfe, an actress who has also devoted her life to the arts, has to admit she is slowing down, but doesn't want to lose her independence.

These boys are strangers, but I call them my grandsons.

And they're 11 years old.

They were ten, but now they're 11.

And I'm only 90 years older than they are.

(laughing) 90 years older.

Ooh!

ALISA MATLOVSKY: She was 97, she was still living alone, she wasn't doing anything, she didn't have a cane, she had nothing.

And she fell out of bed when she was 97, and that just started this sort of accelerated, you know, trip toward old age.

STREEP: Most seniors who fall, like Janet, lose their independence and mobility.

But Janet is not one to accept help.

Her daughter, Alisa, hired geriatric care managers to mediate the situation.

PATRICIA MULVEY: We can come in without any emotional baggage.

We order the groceries, we make the doctor's appointments, we take them to the doctor, we get the reports from the doctors, we follow up on what other things have to be done.

The child can go back to being the child of their parent, not their caregiver, not having that burden of responsibility.

Hello?

WOMAN (on phone): Hello, is this Miss Janet Wolfe?

Yes, it is.

WOMAN (on phone): This is Judy calling from California.

JANET: Oh, my God, you're calling from California?!

What are you doing?!

I'm still alive.

WOMAN (on phone): Thank God!

I don't know who the hell it is.

I went to a man called Simeon Golar, who was the Chairman of the Housing Authority, and he said, "Could you start an orchestra?"

I said, "Sure."

And I started one 40 years ago made up of classical black musicians because I noticed that black musicians would go to music school and come out and have no place to play.

I was at some party and I said, "Mr. President, I came over to give you a break."

And he pulled me down on his lap and he said, "Take the picture."

We never got any further than this.

I ought to call him again.

This is Luciano Pavarotti, who was crazy about me, and he gave me free tickets to every one of his concerts.

Oh, this is Roberto Rossellini and Federico Fellini in Rome, where we were making an Italian movie.

I taught the rumba, but all my partners are dead, so I can't dance anymore.

Everybody is dead now that I think of, that I knew.

I used to be interested in theater and dance and classical music, and then I reached 100, and now I'm interested in Kleenex, toothpicks, and diapers.

It's quite a letdown.

Hi, how are you?

You look fabulous!

JANET: What?

DEBBIE RATNER: You look so wonderful!

Are you looking at me?

DEBBIE RATNER: I am!

Something's the matter with you.

STREEP: Debbie Ratner, the geriatric care manager, helped coordinate care and find part-time home health aides.

I'm wondering how everything is going?

ALISA MATLOVSKY: Well, I have to tell you that Christine was a godsend.

I don't know we could have done anything without her.

She's been amazing.

And do you have other aides still coming in?

JANET: Kathleen and Christine!

Kathleen and Christine.

I don't need anybody except to scratch my back.

RATNER: Well, there's a lot more than that, though, Janet.

What?

RATNER: There's all the care that you get.

It's hard to do all those things by yourself at this point.

STREEP: Geriatric care managers' efforts to mediate family dynamics relieves some, but not all, of the stresses of caregiving.

RATNER: That's where the struggle has been genuinely is that she's resisted the care, and they've tried so hard to do all the right things to care for her.

And the fear that goes along with not having the right care in there because she's resisted it.

Is there gonna be a fall?

Is something gonna happen?

Does she need to go to the hospital?

How are we gonna know?

Is she being fed?

Is she eating?

You know, these are very basic levels of life.

When somebody's 100 years old and they still have self-determination, they're gonna decide if they want to eat or not eat.

They have the right to do that.

But it's very painful for the family to watch.

Now I'll have to get a Band-Aid.

That's enough.

Okay, just leave it there.

I'm gonna put a Band-Aid on it.

ALISA MATLOVSKY: It's because of Christine that I haven't had to turn my entire life over to my mom.

I can see her more at times when it fits into my work schedule or when I can actually not feel like I'm being sucked dry.

Saved!

Saved, I'm alive!

MATLOVSKY: I feel guilty every time she goes to the doctor and I'm not with her.

I feel guilty every time she asks me to come in and spend the night and I don't.

And she does it a lot.

"Can you come in tonight?

Come in and have dinner, and you wanna spend the night?"

And, um...

I mean, I... (sighs) I'd like to think that I'm not being a bad daughter.

I want to be a good daughter.

RATNER: Do you feel like things have stabilized now that you have aides in full-time?

MATLOVSKY: I do, but I think that they've stabilized, but I think she's...

I mean, even in the last six months, what happens at the end of your life when you get to be that old is that each month counts for more.

And so a month in my life doesn't see as much change as a month in her life, and a month in her life does show change.

It would be a disaster if we didn't have somebody in place.

JANET WOLFE: What are you talking about, my dying?

No!

I'm 100 years old and four months, and I don't want to die before the boys grow up and go to college.

MATLOVSKY: With my mom, I can't imagine looking back on my life not having given this to her.

I can't imagine, um... You know, I can't imagine saying, "Well, you know, we put her in a home."

This is part of the relationship, you know?

It's a different relationship.

It's really different than it used to be, but it's part of the relationship.

It's the way things are.

Bye, Grandma!

I'll see you later.

Yeah.

Night, Grandma.

See you later for dinner, I hope.

STREEP: When journalist Jane Gross began caring for her mother, she encountered a world she was not prepared for.

JANE GROSS: I was having these mean daughter fantasies about getting in the car and just pointing it and, you know, leaving behind no forwarding number and just let everybody else take care of this.

If I'm reacting this way to being forced to be her mother, imagine how she's reacting to being forced to obey her daughter.

STREEP: Jane's odyssey of caring for her mother lasted four years.

She captured her rude awakening in a book that speaks directly to the crisis in caregiving.

JANE GROSS: There's no question that the flipside of the science that made these long lives possible is these long lives.

And we live too long and we die too slowly.

STREEP: Since 1950, we have added more than a decade to the lifespan of Americans.

But as the golden years stretch out, seniors are commonly riddled with multiple, chronic, and sometimes debilitating illnesses.

JANE GROSS: The baby boom generation, however many million, 76 million, they're all going to get old at the same time.

It's absolutely inexplicable to me that you can have that kind of car wreck sort of staring you in the face as a government and not do anything about it.

AI-JEN POO: We're about to have the largest older population we've ever had in the history of this country, and there are people who want to live at home in their communities, live independently, and there's just no support or infrastructure to make that happen.

So we're a society that hasn't adequately accounted for family caregiving work historically, and now we're at a point, given all of these changes, where that is simply not sustainable.

STREEP: When Jane's mother's health became compromised, she moved back to New York to be near her children, eventually ending up at the well-regarded Hebrew Nursing Home in Riverdale, New York.

JANE GROSS: From the time my mother moved to Florida until the time my mother did in fact wind up on Medicaid, she spent more than a half million dollars.

And my brother and I used to tease her that she must have robbed a bank, because as best as we knew, she didn't have a half a million dollars.

STREEP: Living longer is expensive.

Most older Americans do not have enough savings to cover the costs of living into their twilight years.

Studies show that 70% of adults 65 and older will need some form of long-term care.

The government's Medicaid program covers the cost, but only for people living in poverty.

Medicare, the government's program for health care after age 65, currently covers just a fraction of the costs associated with long-term care.

GROSS: We're all raised believing that people past 65 are the only ones in the country who have universal health care, and they do if they need a heart transplant, and they don't if they need a home health aide or assisted living or a nursing home.

You pay for all of that yourself.

You help them, you spend your money too.

I mean, the money that the children are spending is their retirement money.

There are many scenarios in which by the time this is over, you know, Mom and Dad are broke, and so are you.

STREEP: When Anthony's sister, Rochelle, saw that Anthony was reaching a breaking point, she stepped up to take over the care of their mother.

She looked to her support team of five children to help her with this responsibility.

ROCHELLE: Her presence, when she makes it through that door, it just enlightens the house.

It enlightens us.

You have Tequoia, who's probably in the kitchen and she's cooking because... Oh, I'm so grateful that she's here with me to help and assist with that.

"Her fat cat found the chocolate.

"He said, 'This block of chocolate is mine and all for me.'"

Boy, he can read!

He can read!

ROCHELLE: Everyone has a part, and everyone plays their part.

STREEP: 14-year-old Imani gave up her bedroom to her grandmother.

IMANI: I'm just glad that I can help out in some way instead of it just being my mom or my sister, knowing that I have some type of positive effect to what's going on.

STREEP: Odester is thriving.

One way Rochelle manages the responsibility is by giving her family and Odester a break through adult day services.

It also allows Anthony, who frequently joins her there, time with his mother.

The activities and socialization of adult day services have been shown to reduce agitation and improve sleep in seniors with dementia.

Oh, okay.

Now we're talking!

STREEP: It also gives Rochelle much-needed time for herself.

In fact, a family caregiver intervention program started over 20 years ago at NYU Langone Medical Center has shown that the well-being of the caregiver can delay nursing home placement for seniors with dementia by an average of 18 months.

Anthony and Rochelle enrolled in this intervention when they met Dorothea Harris, a social worker who coordinates the program for African-American families.

The intervention includes assessments, education, and family counseling sessions.

Not long into caring for Odester, tensions escalated between Rochelle and Anthony over finances.

Rochelle asked Anthony, their mother's legal guardian, for more money from their mother's pension to cover out-of-pocket costs.

To call and you not respond, I just couldn't understand, like, what did I do?

What am I not doing?

I'm tired of you calling me about money.

I just don't want to hear it.

ROCHELLE: Every time I call you it's about money, Crow?

90%, 90% of the time.

ANTHONY: Me and Rochelle was going through a thing that she wanted more money to take care of Mom.

I felt that you shouldn't get more money because it's your mom too.

I didn't get anything.

I don't like to deal with the conflict.

It's easy for me to flight.

It's either been fight or flight.

You're gonna always have one that wants to be in control of everything, and I was that one.

Brother is choosing to disregard me and still saying, "There has to be something going on, there has to be more going on," but I don't know what's going on because he wouldn't talk with me.

JANE GROSS: I think that you tend to bring all your childhood baggage.

I mean, whatever your role in the family was when you were little kids, you revert.

I'm gonna put her name up here.

ANTHONY: When Dorothea wrote my mom's name on the board, that's what I focused on.

I said, "It's not even about me, it's about her."

As long as she's okay and she's happy, the money doesn't even matter.

It was like Anthony and I both just magnetized towards that piece of paper.

That's what it felt like, like we were just magnetized towards that paper.

And our focus went right to, "Wow, this is about Mom."

STREEP: For Rochelle and Anthony, it was a turning point.

The intervention helped them to refocus on the primary issue at hand: providing much-needed care for their mom.

Alicia is juggling two jobs.

She's a bookkeeper at her church and an unpaid caregiver for her mother.

Struggling to get by, Alicia learned from Ana that she could actually get paid for her caregiving role through a special Medicaid waiver program in Minnesota.

ALICIA: There was a point where I really didn't want somebody to pay me to take care of my mom because I didn't think it was right.

But then financially, I need somebody.

I need to get some type of...

I feel that I need to, and it's nice that I do get some type of payment.

It's not the rate that I get paid at the church, but still, it's something.

You know, it keeps me afloat.

AI-JEN POO: A lot of people want to work and they want to take care of their families.

It shouldn't be a choice between actually keeping your job and taking care of your family.

That is an outdated and old question.

For us to be able to create the kind of economy that thrives in the 21st century, employers are going to have to account for family.

That's the bottom line.

STREEP: Caregivers who are not supported by their employers frequently are forced to work fewer hours, forfeiting both wages and benefits.

At 50 years of age, caregivers who exit the workforce lose out, on average, $300,000 of income over their lifetime, causing many, especially women, to age into poverty.

This is not the case with Breanna, who recently accepted a job at Target.

Target has launched a new initiative called "Work Different," understanding that flexibility is good for business and, in turn, good for Breanna.

Working normal hours, I'd go to my parents' house in the morning, pick her up, drop her off somewhere, be back at her house.

THAD HELLMAN: Recognizing that there is more than just work, and it's really about you have other things that are going to be a high priority in your life, and recognizing that that's okay.

If you're flexible and accommodating, you can get much better product, and people are much more motivated and much more engaged in what they do if they feel like they've got the other aspects of their life, you know, in good control and that they're doing well in those areas as well.

BREANNA: Having the support from Target and from my leaders to be able to focus attention on family has recommitted, almost, my interest in staying at the company and continuing to want to become a leader and move up in ranks and really have a strong and healthy career here.

If the people that are surrounding you and are supporting you in making those decisions are showing that kind of loyalty towards you, it's hard to not turn around and have that exact same level of loyalty back to them.

STREEP: In an effort to support caregivers and seniors wanting to stay in their homes, the citizens of southwestern Ohio decided to take matters into their own hands about 25 years ago.

They voted in favor of a property tax levy to support vulnerable seniors aging in place.

As a result, the Council on Aging has an additional $41 million a year to widen the safety net for 14,000 aging adults of modest means.

SUZANNE BURKE: In all five of our counties, those funds are largely dedicated to allow seniors who are not eligible for Medicaid but who I would describe as either one financial crisis or one health crisis away from Medicaid to be able to receive services that they can't otherwise afford that would allow them to stay at home.

STREEP: Missy Lairson, a home health aide, is supported by the program.

She has become part of the family to 96-year-old Edwin Hendel, who lives alone in his farmhouse.

Good morning!

Hi, baby!

Hi, how are you?

Your hands are cold.

I know, but I have a warm heart.

STREEP: Missy comes every weekday morning to cover the breakfast shift for Mr. Hendel's daughter, who works.

BURKE: We are providing services for the individual at times that allow caregivers to be at work and to have jobs and to be in a positively contributing to the economy as opposed to being an unpaid full-time caregiver.

You love your eggs, don't you, Dad?

STREEP: The elderly services program provides vital social support.

BURKE: People who are working and who are trying to take care of their parents know how important this is, that if they didn't have that service available, they wouldn't be able to work.

STREEP: Mr. Hendel's daughter, Kathi, married with two children, is a full-time high school science teacher.

Before the elderly services program, she worried about her father around the clock.

KATHI: I was getting up about 5:30 in the morning, and I was getting both my parents started for the day.

Whatever I had encountered in the morning-- you know, sadness, despair-- and so then I had to just kind of strip that off me and get to school and be someone different.

Okay, well, I have to remind you of your medication, okay?

Yeah.

This is right here.

KATHI: When elder services started providing a morning person for me, then I didn't have to do that in the morning, and it made my life so much better because I knew that they were in good hands and I could go on about my day.

All right, Dad, we're going to change the sign here to "Day," okay?

Yeah.

So you'll know it's daytime.

BURKE: With working families, it's very difficult to do everything.

And this levy I think is so appealing to individuals, and why the community supports it is that it's not designed to do everything, to take away what the family can provide.

It's designed to support what the family cannot provide.

KATHI: My parents' property is in three parcels.

Right here listed under the Annual Tax Distribution, it clearly says how much the amount of each parcel goes toward payment towards senior citizens.

You know, to be a daughter of strong people, strong, hardworking people that have never missed paying their taxes-- I doubt that they've ever been late on their taxes in their lives-- it's just nice to see it coming back to them.

STREEP: The levy was the brainchild of a woman named Lois Brown Dale, who saw a need for elderly services more than a quarter of a century ago.

Her daughter, Karen Kelly, worked alongside her activist mother.

KAREN KELLY: The funds were drying up and they were having to go out and do something else.

And they had to create something someway, and that was how to get those dollars in, and it was how to do it, was by a levy.

"We are here to do good."

That would be her guiding principle from the day she was born.

"We are here to do good."

And that is the mission.

STREEP: Lois could see that the Older Americans Act of 1965, created in response to a lack of community resources for the elderly, was inadequate.

Today, the act provides only $8 million compared to the $41 million for the elderly services program Lois started.

BURKE: Aging advocates from across the country are so very jealous because they, like us, see the need, but there are no solutions for them.

STREEP: The most common services the program provides are home care assistance and Meals on Wheels.

Pour that in, and then we'll... LAURIE PETRIE: because you've got the senior, then you've got their family, Kathi in this case.

Many of our clients, they have sons and daughters who work during the day, so they can remain productive.

And then following that line of reasoning, their employers also, who need their employees to be on the job and concentrating on their work, not worrying about Mom or Dad, whether they're safe at home.

So in an indirect way, the levy helps employers, businesses as well.

Stir it a few more times, because it'll make it better.

STREEP: These social services are vital to keeping the elderly safe and cared for in their homes.

And they have demonstrated that services can be provided inexpensively.

The cost averages about $350 a month per person versus an estimated $4,000 to $5,000 a month for Medicaid-funded care in a nursing home.

PETRIE: If we want, in this country, to not institutionalize everyone who's old or disabled, if we want to care for them in the community, that means the community has to step up.

The caregivers can't do it all.

They do a lot of it, they do most of it in this country, but they need support, they need services, they need a helping hand, an extension of what they can do, so that we can keep older people part of the community.

BURKE: 95% of older adults want to stay at home as long as possible.

And from a taxpayer standpoint, home is the cheapest alternative.

So that is a win-win.

In this program, maybe it's $350 a month versus, if they're in a Medicaid facility at some point, $4,000 to $5,000 a month.

And those are all tax dollars.

So why would we not want the solution that makes people the happiest at the cheapest alternative for the taxpayer?

STREEP: On average, more than 70% of the citizens of southwestern Ohio voted in favor of the levy on the latest ballot.

Their vote is helping thousands of aging Americans in Ohio to grow old in their homes.

You used to drive the mailman crazy with those chickens peeping in the mail truck.

Yeah.

STREEP: Studies show that the majority of Americans would rather live and die in their homes.

But many family members are not having the conversation to let their wishes be known.

BUD HAMMES: I think everyone has probably seen someone in their family or some friend suffer because they didn't know what a loved one, a parent, a mom or a dad, wanted, and decisions had to be made, and people were in great moral distress because they didn't know what to do.

STREEP: Clinical ethicist Bud Hammes discovered that caregivers were no better at guessing their loved ones' final wishes than a complete stranger.

To avoid this uncertainty, communication is critical between caregivers and those being cared for.

Bud had started to encourage this form of communication within his community of La Crosse, Wisconsin, back in 1991.

Today, thanks to Bud, La Crosse is no ordinary town.

More than 96% of the adult residents now have an advance care directive at the time of their death, compared to less than 50% of residents elsewhere in the country.

End-of-life planning is initiated at many points of contact within the healthcare community.

Mary Ellen's ailing father and mother participated in advance care planning, which involves a series of conversations with medical professionals.

MARY ELLEN: The nurse explained medically what the quality of his life would likely be like if they did CPR or chest compressions on him when his heart stopped.

Well, that was a game-changer for him.

His belief was always, "If I can't take care of Mom "or if I can't be with Mom in a meaningful way, then I want to be done."

By having the conversations and really understanding the decisions my dad was making, he understood clearly what he did and did not want.

That took a huge burden off me.

I just think I don't know what I would have done if I had to be the person to make that decision.

HAMMES: The planning that we have undertaken here in La Crosse has achieved is in the last two years of life, we use about ten hospital days to care for people.

The national average is 20.

This actually can be done in a way which improves the quality of life of the patient.

I don't know of any patients who say, "I want to be in the hospital.

I want to be so sick, I'm gonna be in the hospital."

STREEP: Quality of life is emphasized over quantity, but there are times when the choice is for more treatment.

HAMMES: I've seen patients who may have a plan to live to a grandchild's birth, and to them, that's an important goal.

So sometimes we end up doing more treatment than we might have been comfortable with because there's a specific human goal that this person wants to achieve.

But overall in the population, most people say, "When I get to this point, all that's left is suffering, and I'd prefer not to go through that."

That's not rationing care; that's understanding the burdens and benefits of treatment and tailoring the treatment to that person's ability to bear those burdens and benefits.

MARY ELLEN: When you're able to orchestrate an end of life that they wanted-- he wanted to be at home, he was able to get his last rites, which was very important to him-- those things allow for a really uncomplicated grief.

Grief can be just about the sadness of the life gone and not about regret, and that's a real relief.

STREEP: To encourage this advance care planning, one of the largest companies in La Crosse offered an informational lunch to its young workforce.

So many employees signed up that the company ended up scheduling five different sessions.

SPEAKER: When you're in the hospital in the moment of having to make a decision, that's not the best time to try to figure out what the best decision is to make.

STREEP: It started when Don Weber, the CEO of Logistics Health, was confronted with his own mother's mortality.

DON WEBER: I was at the hospital next to my mother's bed when her doctor came in and told her that, you know, "Rita, you may live a few hours, a few days, a few weeks, "maybe a few months, a couple of months.

"And so, you know, your heart's failing, and it's not gonna get better."

I often sleep in my chair during the day.

STREEP: After going through advance care planning with his mother and siblings, Don offered his employees the same benefit that he had given himself.

WEBER: She's at peace because we've had this time together.

To have this experience and then not to allow others or to try to inform others how important that is, I really believe that there's a reason for this.

Hey, Linda.

Hey!

Surprise.

Yeah!

WEBER: Taking care of the people who have made us successful and helping those employees, giving them the tools and the resources so, "Hey, if I need to leave every Wednesday afternoon at 3:00 because it's my day to spend with my mother," we support that.

Why wouldn't we?

STREEP: As a former Marine in Vietnam, Don's service shaped his views about how he treats his employees.

DON WEBER: I came out of the Marine Corps understanding what loyalty was.

And you can totally count on the person on your left and your right, you know?

You're there to the end, whatever it takes.

And I would do that for any of my employees, and they would do it for me.

I don't just expect it-- it's there.

But it's a two-way street.

STREEP: Don's investment in his employees' well-being has paid off.

The company has seen a 12% increase in productivity and a 21% drop in turnover rates.

WEBER: I believe that we add more to the bottom line because of these investments to our employees than I think most corporations or CEOs could even imagine.

You know, changing a culture is a long-term commitment.

I see how things are changing in their lives, you know, particularly on the wellness side of things.

They're making better choices, smarter decisions.

They're healthier people physically, mentally, spiritually, all around, you know, and they're bringing their young families up that way.

And I think that the real impact will be on this younger generation in the future.

(cheering) BREANNA: Welcome, everyone, to Blondes versus Brunettes 2014, benefiting the Alzheimer's Association!

Let's go, let's go!

BREANNA: There's a group of us in Minnesota who are banding together as young champions to figure out what can we do to raise our voices and be heard so that we can help other people our age understand that this is our generation's problem to fix.

There are too many people who are in the same position as me and are caring for a parent, and what we've been able to do to give them an outlet to talk about what's going on and to talk to other people who are in similar situations.

(cheering) I'm not saving for vacations, I'm not saving for a house, which I really wish that I could be saving for a house.

I'm putting money aside to care for my mom.

I'm pretty scared for my family's future.

What I'm not scared about is that we're all gonna be facing these fears together and working through them as a unit.

I'm so proud of you.

My word!

ALICIA: My mom would have done it for us.

If something happened to me, my brother or my daughter, she would have taken care of us no matter what it took.

It's kind of like a reverse role.

She took care of us, now it's my time to take care of her.

WEBER: The value and what you get when you are a caregiver, there's so much good in it.

KATHI: We're all going to be there someday.

You know, if we're blessed with long life, we're all going to be at that point.

And wouldn't we want the best care possible?

Wouldn't we want our wishes met?

You think you want two braids again or just a ponytail?

Mm-hmm.

ROCHELLE: It's those treasured times that outweigh those challenging moments.

There is a rainbow where that storm and that peace collides.

It produces such a beautiful thing.

Explore caregiving resources, watch exclusive video, and share your own experiences at pbs.org/caringformomanddad.

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