Second Opinion with Joan Lunden

>> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.

>> In 1981, the term "sandwich generation" was coined to describe a group of Americans who are caring for children under 18 and older relatives at the same time.

Well, today, millions of families are facing the dual challenge of sandwich caregiving as the population ages and as Americans are having children later.

Joining us today is Dr. Roger Oskvig, a specialist in geriatrics and aging at the University of Rochester Medical Center... >> The stress of being a caregiver, particularly when you're taking care of multiple generations, is an inflammatory process in the body.

>> ...Christine Peck, a licensed social worker with Lifespan... >> I think one of the most stressful things is always feeling like you have to do for, instead of doing with.

>> ...Grace Whiting, president and chief executive officer of the National Alliance for Caregiving... >> Are you aware of how hard it is for families to try to balance all this in addition to whatever grief or complexity they have in their life?

>> ...and Shelly Pollard, who will share her story of love and caregiving in the sandwich generation.

>> It's a journey.

It's definitely a journey.

It's just not, one day, you're in charge.

It's just a slow, gradual change.

>> I'm Joan Lunden, and it's all coming up on "Second Opinion."

Those caregivers who are part of the sandwich generation spend at least 21 hours a week on uncompensated care.

Nearly three-quarters of them are employed full time, and about 60% of them are women.

And today we meet one of those caregivers.

So, we want to welcome you to the program, Shelly, and for sharing your story with us, because you are a full-time worker and you have a teenage daughter at home -- I think, about 15 years old -- those easy years -- but in 2018, your dad was involved in a pretty bad car accident.

Tell us how things changed at that point.

>> So, sure, Joan.

Thanks so much for having me.

My caregiving journey really changed with that episode.

Kind of about two years ago, I had a mother who was in a assisted-living facility, a dad who was pretty healthy and was taking a lot of care, just making sure he was seeing her regularly; keeping her mind straight by playing cards with her; and managing all her assets.

And then, about two years ago, Dad started having some challenges.

He'd been a diabetic for a long period of time, on insulin, type 2 diabetes, and it was just getting harder and harder to manage.

And then he also had some cardiac issues and having fluid in his heart and just lots of trips back and forth to the E.R., night after night after night.

Then, in 2019, he had a pretty severe accident, totaled his car, and we were very blessed that everyone walked away, including my then-81-year-old dad.

But after that, the state revoked his license.

So, when that happened, Dad knew he couldn't see Mom at the pace he was seeing her, because he was going just about every day.

And then we had to make some tough decisions about what would be best.

And so, as a family -- my father, my sister, my brother-in-law, and I -- decided to try and find a place that would be good for both parents.

It was a hard... >> Yeah.

>> ...a hard thing to do, because we very different needs.

Mom needed kind of constant care, and Dad was very independent.

We were lucky to find the perfect place.

But in the midst of all that -- all those decisions -- was right when my daughter was transitioning from middle school to high school.

You know, that's always a rough -- >> Yeah.

>> ...or can be a rough time for kids.

>> And you're working full time.

I mean, that's a lot on anyone's plate, but it's a rather common story, Doctor, for a lot of caregivers.

In fact, probably most of the caregivers in the country.

And you know, how do you guide?

As a gerontologist, you're dealing often, I suppose, with your patients and their adult children.

How do you help guide them through that difficult transition?

>> My typical format, when daughters and sons begin to be worried about their parents, is I bring the parent in with their children, and tell the children they're not allowed to talk at all during the visit, but I'm going to talk with the parent.

And so what I'll do is say, "There are some indications that we are concerned about -- about your driving or about your cooking.

The first time you put yourself or somebody else at risk of harm, that goes away.

And just need to be prepared for it.

And that's what I'm going to tell your children to do."

So, the independence that may feel like it's being taken away is my order that they have to carry out to protect them.

>> You're kind of saying, "This is going to happen, and you can blame me."

>> Yep.

>> Because guilt is a very big part of this.

You know, just the guilt.

Even though you know, in your heart of hearts, that a parent needs more observation all the time and more help, you still deal with the guilt.

>> Yes, and I would imagine that Shelly, like many individuals, gets that plea from their parents, just like you do from your teenager, about, "Don't leave me here.

Take me home.

I want to go to someplace and visit.

I want to see my brother on the East Coast," and that sort of thing, and the guilt just gets layered on.

>> Yeah.

>> I'm just struck by that approach, and I'm wondering, one of the things we've talked a lot about in Washington is these new models of healthcare delivery that allow people to engage in shared decision-making and that it's not necessarily a switch that goes on and off.

But even in somebody that might have dementia that the family is sort of negotiating that experience over time.

And the people who are caring for that friend or family member, that those folks are thinking about, I guess, less like the way you would treat your kids and more like it's sort of your third act in life as you get older.

And so what types of things can caregivers be helpful in supporting that person with?

And where does that person's voice really need to shine out?

So I'm intrigued by that approach of the caregiver sort of sitting quietly, and also interested to know whether people actually do sit quietly.

>> I was going to say, and whether they could do that and be quiet.

>> I did not.

>> Yeah, and, Shelly, what changed?

I mean, once your dad went into -- and he was in independent living.

But what did it -- How did it change life for you -- your relationship, your ability to communicate?

How did you kind of change that role as a caregiver?

>> So, I have a very supportive family.

My sister and I are team players in the care of my family.

Her husband is the three -- So, we're the Three Amigos.

I think what changed the most was just, when people get slower, and I've got to commute an hour from work to come see Dad, and it's taking him a longer time to get to his question.

I think you lose a little bit of patience.

And just taking over more responsibility was harder for Dad.

Like, I do his medicines now, 'cause his medicines almost need three degrees to do the 37 pills he takes.

And so going to more of his appointments was the first step.

Then, taking on more responsibility, like asking him about his bills and where things were kept.

And it's -- it's a journey.

It's definitely a journey.

It's just not, one day, you're in charge.

It's just a slow, gradual change that I welcomed because I had great parents.

But it was tricky.

It was tricky 'cause I was often deciding between a doctor's visit with my parents and a school activity for my child.

>> See, what's what we see.

That juggling act is so -- Because you had a daughter going to a new school and at a tough age -- you know, those young teen years.

Is Shelly's story common to what you see all the time, Christine?

Because you're a social worker, so you deal with people every day.

Is that a pretty common story?

>> It's very common.

And there's really a misperception that when you have a loved one that goes into a supportive but independent living situation, that there's more supports and a caregiver may have reduced responsibility.

So, in some ways, you have some reduced responsibilities, but as I hear, Shelly, you talk about there's still medication management.

>> Yeah.

>> There's still, you know, making sure that your parent has everything that makes them comfortable and special toiletries and everything else that they need.

>> Laundry -- I did the laundry for a long time.

>> Laundry, right, right.

>> There's Shelly shaking her head "yes."

>> [ Chuckles ] >> And so, while there are wonderful supportive housing options for older adults, that offer socialization and so much more, there is still the caregiving responsibility of maybe in a little different way.

And then the guilt.

>> Oh, yeah.

The guilt was horrible.

When you have to have your 10-year-old -- say, "We're gonna go see Mimi," and she's like, "Well, I wanted to go to my girlfriend's house."

And you're like, "Well, we're gonna go see Mimi first."

And a 10-minute visit turns into an hour, because Mom got sick.

Or the nurses are asking you questions, or you don't like the way her room is set up.

And my daughter had a lot of sacrifices, even the times in the middle of the night, I'd get a call and I wouldn't know, "Do I take my daughter with me to the hospital while I care for a parent?

Or do I call someone to come here in the middle of the night?"

I mean, there's a lot of balances and juggling you do.

I'm really blessed I have a supportive network... >> Yeah.

>> ...between my child's family and great, great friends.

>> But this is a teaching moment right now, Shelly, for everybody that's watching, that that's one of the things that really makes the journey much easier, is when you have the ability to pull in family members or friends to have that supportive team.

Grace, we're hearing Shelly's story, but talk to us about the numbers of Americans, in this country, who are all dealing with this sandwich caregiving situation.

>> Yeah, so, there's lots of different ways, I think, we can be sandwiched.

And in the research that we've done with AARP, we do a study roughly every five years called "Caregiving in the U.S." And that most recent report, we think there's 53 million Americans who are caring for someone of any age, with a healthcare need or a functional disability.

What's, I think, most fascinating about these families who are sandwiched is, about 11% of that 53 million are the sandwich caregivers.

The other thing I would say, it's interesting, Shelly, to hear you talk and, Christine, to hear you talk about that sense of guilt.

And, Joan, I think you're right to raise it.

We ask about that emotional stress on caregivers, in addition to other kinds of stress -- financial, health, and wellness.

But we also asked if people felt like caregiving brought a sense of meaning and purpose into their life.

>> Yeah.

>> And it's only about half of caregivers that say yes to that, and part of the difference is that attitude and having that additional support around you so that you can balance the positive and the more stressful sides of caring.

>> Well, because, otherwise, it can just become so overbearing and so stressed.

Clearly, the numbers show us that caregivers -- people giving care to someone else -- have more health problems, even have shorter life spans.

What do you -- How do you advise families?

>> This description of a sandwich generation actually is a good analogy, because what you have is the nutrient, Shelly, in between two pieces of bread, her parents and her daughter.

And so the important thing is that you take care of the nutrient in that sandwich because if that fails, the bread on both sides loses what they need.

>> Shelly, I know that your mom passed away earlier this year.

I'm so sorry that you have to deal with that.

But how did that affect you and also your dad?

>> The passing of my mother was challenging.

My parents would have been married 59 year this year.

>> Wow.

Okay.

>> So you can imagine how hard it was.

And when Mom had been hospiced prior to her -- She started declining, we put her in hospice, and she was just getting hard to look at.

She had some really bad mannerisms, and Dad was still going every day.

And I remember saying to him one day at lunch, "Daddy, you don't have to go every day.

I worry about your health and your mental capacity, going to see her when this is such a hard time."

And he looked at me like I was 2, and he said, "That's my wife.

That's what I'm supposed to do."

And so that type of relationship was a one-of-a-kind thing.

And so the challenge with Mom's passing, the hardest thing was COVID-19 and that he'd been quarantined for the past six months, that we weren't able to have a homegoing service for Mom.

So that was the hardest thing about my mom's passing -- not being able to check on him like I would have, the family dinners we would have had every weekend if it hadn't been this time.

>> And, Grace, though, I also want to take you to the fact that what are we doing, as a nation?

What are we doing to help financially support caregivers?

Because these are complex situations when care is needed that people often don't even know how to provide, and it's all unpaid.

>> That's right, Joan.

So, there's a lot of initiatives at the federal government that are in the works.

One is the Department of Health and Human Services had a federal advisory council called the RAISE Family Caregivers Act.

And essentially, they're coming up with a plan -- a national strategy -- for how we're going to support caregivers in several different domains.

There are, right now, additional funds that have gone into the National Family Caregiver Support Program.

And this is actually a partnership with community-based organizations, and folks can go to eldercarelocator.gov and find, in their county, what type of resources might be available to help take some of that weight off of their shoulders.

We also encourage people to really think about, "Where is it that I need help?

Is it -- What type of activities?

Is it the nursing type activities are real high-touch?

Is it medical tasks, like giving injections or managing meds?

Or is it sort of the coordinating of finances and those other things?"

Because there's not a lot of paid support programs for caregivers.

>> Yeah.

>> I would say, if you're caring for a veteran, they just expanded the Veteran Caregiver Support program to include veterans from earlier conflicts.

Originally, the program was just 9/11 vets.

So, that's one place, is to check in with the V.A.

And the other is under the Medicaid program.

Sometimes and in some states, you can receive financial support if you are caring for a friend of family member.

But it varies.

I actually think folks like Dr. O are going to be a great place to start, just in terms of some of those initial things.

"How do I do this?

Where can I find more information?"

And talking to a physician who can help guide you and your family through that can be really useful.

>> Yeah, I think what you were saying -- >> It's hard to ask for help, though, sometimes.

People find it hard to ask for that help.

>> Yeah, and I think -- she said that's a role for a primary care practitioner.

Women disproportionately are responsible for physical care of that high-touch, as Grace called it.

Men tend to regress to the roles of managing property and finances and things like that -- the technical things that are task-oriented.

>> But women, who it primarily falls on, we're wired -- hard-wired -- as caregivers.

So sometimes it's hard -- It would be very difficult, I'm sure, for a lot of women to say to their two brothers, "Hey, you get in there and you figure out how to do this, as well."

>> [ Chuckles ] >> I hear people laughing.

>> Right.

>> Was that you, Grace?

>> Yes.

It's changing, though.

It's changing, 'cause when we look at the cohorts by age, everybody from Gen Z to the Greatest Generation is in caregiving.

When you look at Millennials and younger, men and women are equally as likely to provide care.

Now, some of that may be they're not doing as much of that high-touch toileting and helping somebody take a bath and get dressed, but I do think that attitudes are changing.

Part of this is recognizing that men may care in different ways.

They haven't been socialized to take on those care roles, so where we see younger men starting to do that, you know, encouraging them that it's okay, there's nothing "feminine" necessarily about caring.

We all have a role to play.

>> I think those roles differ between even same-gender children.

I know my sister and I have very different styles of how we care for our parents.

My sister loves to make the family meal, and I was picking Mom up and buying her clothes.

I mean... >> Yeah.

>> You know, I had to figure out how to buy DD 42 bras.

I mean, that's not something I ever had to do.

And so, even my sister and I have very different styles of caring for our parents, but we work well together.

I think that's the biggest thing, and I think my advice for everyone is always faith, family, and friends.

That's the only way you'll get through it.

>> What do you worry about, as a physician, about the health of all of these people, with just so much on their shoulders?

>> Well, I think you introduced it earlier.

They really need a close relationship with their physicians to maintain their health.

The stress of being a caregiver, particularly when you're taking care of multiple generations, is an inflammatory process in the body.

It ages the heart, it ages the kidney, it ages the liver, it ages the brain.

Life expectancies are shorter for individuals the longer that you are a caregiver.

All of that has an impact, and you need somebody that's your ally that's looking out for you and saying, you know, "We need to manage all of this.

We need to make sure you're healthy, because if you're not, they don't have you."

>> Absolutely.

But we don't want to end without talking about the silver lining that definitely comes...

I mean, I know I had it with my mom when I was back with her as much as I was during the process of -- of being in charge of her healthcare.

>> And being part of your -- your parents', your loved ones' healthcare team is so important.

The more that you learn and understand about, you know, their challenges, and the more that you can learn and understand about their strengths and be able to spend more quality time and be able to focus more attention on -- you know, we talk about the child becoming the parent, and, you know, there are times when you feel like that you need to make choices on behalf of your parent, but you don't want it to be like that all the time.

You know, I think one of the most stressful things is always feeling like you have to do for instead of doing with and really having that, you know, coming back around to that positive relationship -- like both, you know, Shelly mentioned, and Grace, too, about being able to come back around and hear each other's voice, and there are very -- there are precious moments that are part of the caregiving experience.

>> What do we need to do to better this situation for 53 million Americans?

>> So, part of this, I think, is really from a -- from a policy level, thinking about how we can build better pathways.

You know, can we make it easier for physicians to spend time with family members?

Can we make it easier for service providers who give things like respite to really connect with people so that, you know, the caregivers don't -- you know, it's not sort of the end of the line?

I think the other thing is, right now, one of the biggest things we're seeing is that sense of isolation, and so it's funny, as we were talking about different siblings, like, I know that I'm -- I -- ironically enough, I probably would be a terrible caregiver.

[ Laughter ] I feel like I would be coming in and, like, clapping and be like, "Buck up, you're fine."

You know?

And so...

But then I think about all the caregivers that I know that we interact with, and how selfless you have to be to take on that role that you forget to advocate for yourself.

So that same energy that, you know, I might not be very good at doing the day-to-day caregiving, I can apply that more sort of advocacy part and advocate for that person, whether it's within the health systems, you know, it's helping with insurance, helping to get other services for the person, you know, noticing what they're going through, or even calling Congress and saying, "What are you doing about this?"

You know, and I think that's something for a lot of people to think about, 'cause they see people in their network who are doing caregiving, and they say, "Gosh, what can I do?"

And I think not just asking that question in our heads, but going to people and saying, "How can I help?"

you know, that would go a long way.

And then bringing it to the people who control these systems, whether it's the doctor, you know, your health insurance company, or your congressman, saying, "Are you aware of how hard it is for families to try to balance all this, in addition to whatever grief or complexity they have in their lives?"

And let's give them back that chance to just be with that person and to love them, and to not have to constantly be trying to do all these other things we ask them to do.

>> Such great advice.

Shelly, I mean, as somebody who has gone through this journey yourself, dealing with all the complexities of it, what would you say to other caregivers?

>> Count your blessings.

Know it's a journey.

And find someone who can support you.

>> Such great advice today.

Thank you all for being a part of this panel and addressing a -- a complex situation that so many Americans deal with every single day.

And, of course, thank you for watching.

Find more information about the series at secondopinion-tv.org, and you can also follow us on Facebook and YouTube, where you can watch today's episode and much more.

But from all of us here at "Second Opinion," we encourage you to take charge of your healthcare.

I'm Joan Lunden.

Be well.

>> When our communities need help, Blue Cross and Blue Shield companies step up with partnerships capable of preparing meals for thousands of families in need, because it's not just about health insurance.

We believe it's our responsibility to expand care to rural communities, protect our heroes with safety equipment, support local nonprofits.

These are our stories to help build stronger communities for the health of America.

>> "Second Opinion with Joan Lunden" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.