The Cost of Growing Old in America

>> SO WHAT DOES IT MEAN TO AGE IN AMERICA WHEN BASIC TASKS LIKE BATHING, GROCERY SHOPPING, PAYING BILLS BECOME JUST TOO DIFFICULT.

WHO CAN THE ELDERLY TURN TO FOR HELP?

PROFESSIONAL ASSISTANCE IN NURSING FACILITIES ARE EXPENSIVE.

SO MORE THAN 80% OF AMERICANS OVER 65 RELY ON FAMILY AND FRIENDS.

AND AS OFTEN, LUCY SCHILLER KNOWS WELL, IT'S NO SMALL TASK.

HER NEW BOOK, "AGING OUT," DRAWS ON HER PERSONAL EXPERIENCE, CARING FOR HER OWN GRANDMOTHER DURING THE COVID-19 PANDEMIC.

AND SHE SPEAKS TO HARI SREENIVASAN ABOUT REALITIES OF IT TODAY.

>> Reporter: THANKS.

LUCY SCHILLER, THANKS SO MUCH FOR JOINING US.

YOU'VE WRITTEN A BOOK RECENTLY CALLED, "AGING OUT, AN EXPLORATION OF CARE GIVING COMMUNITY AND HOW AMERICANS GROW OLD. "

NOW, IT TAKES A GOOD DEEP DIVE INTO WHAT I WOULD CALL THE ELDER CARE INDUSTRY IN THIS COUNTRY, BUT IT WAS PERSONAL.

WHY DID YOU START THIS?

>> THAT'S A GREAT QUESTION.

ONE OF THE REASONS I STARTED IT WAS BECAUSE I REALIZED I KNEW ALMOST NOTHING ABOUT THE DAILY REALITIES OF WHAT IT'S LIKE TO BE AN OLDER PERSON IN THIS COUNTRY.

AND THE MAIN WAY I KIND OF REALIZED IS THAT LEVEL OF IGNORANCE IN MYSELF WAS BY HELPING TO TAKE CARE ONE OF MY GRANDMOTHERS IN THE BEGINNING OF THE COVID PANDEMIC.

WE TOOK HER OUT OF THE LIVING ASSISTED COMMUNITY.

I MOVED UP KIND OF THE ONLY PERSON IN MY FAMILY WITHOUT A JOB, SO VERY CONVENIENT.

I MOVED UP AND LIVED WITH HER FOR A FEW MONTHS, AND SAW FIRSTHAND SOME OF THE REALITIES OF WHAT IT IS LIKE TO BE AN OLDER PERSON IN THIS COUNTRY.

I ALSO KIND OF REALIZED I KNEW NOTHING ABOUT THE INNER WORKINGS OF WHERE SHE HAD BEEN LIVING FOR THE PAST TEN OR SO YEARS, YOU KNOW.

I VISITED THE ASSISTED LIVING FACILITY ON OCCASION.

BUT THAT IS A FAR CRY, YOU KNOW, FROM ACTUALLY RESIDING INSIDE OF IT.

>> YOU'RE RIGHT.

IN THE LANGUAGE OF ELDER CARE, SHE NEEDED HELP WITH HER ADLs, HER ACTIVITY OF DAILY LIVES.

SHE NEEDED SOMEONE TO MASSAGE HER FEET TO HELP PUT ON HER SHOES TO MAKE HER FOOD AND DO HER LAUNDRY, TO KEEP HER PLACE CLEAN, TO GO GET GROCERIES TO STAY ON TOP OF THE MANY MEDICATIONS AND HEALTH NEEDS TO MAKE DOCTORS APPOINTMENTS AND GET HER TO THEM.

AND THIS WAS YOUR FIRST EXPERIENCE WITH THIS.

YOU KNOW, IT'S INTERESTING.

SO MANY PEOPLE, JUST READING THAT LIST ALONE WOULD SAY, WOW.

THAT'S A LOT.

THAT'S A FULL-TIME JOB.

AND YET THE PEOPLE WHO ARE CARING FOR SO MANY OF THEIR LOVED ONES IN THIS COUNTRY ARE DOING THAT IN ADDITION TO A FULL-TIME JOB.

>> YEAH, VERY OFTEN, AND MAYBE IN ADDITION TO RAISING THEIR OWN KIDS OR ANY NUMBER OF OBLIGATIONS THAT THEY MAY HAVE.

SO IT IS A HUGE AMOUNT OF WORK.

IT IS ALSO, I WOULD SAY, A HUGE AMOUNT OF WORK JUST BEING AN OLDER PERSON AND NEEDING THAT LEVEL OF HELP OR EVEN JUST KIND OF WANTING, YOU KNOW, FAMILY CLOSE BY OR A LOVED ONE OF SOME CLOSE BY TO CONNECT WITH AND TALK THROUGH THIS REALLY INTERESTING AND COMPLEX PHASE OF LIFE WITH.

>> YOU ALSO POINT OUT CULTURALLY, WE STILL, I MEAN, WHILE WE SAY WE RESPECT OUR ELDERS AND WE WANT THEIR WISDOM.

HAS A PART OF SOCIETY, WE STILL SEE THEM AS A COST.

NOT NECESSARILY AS A BENEFIT.

>> YEAH, ABSOLUTELY.

WE CAN LOOK AT THE WORD ENTITLEMENT.

BUT THAT'S A WAY IN WHICH PEOPLE REFER TO SOCIAL SECURITY AND MEDICARE.

I KNOW IT IS AN ENTITLEMENT, BUT THAT WORD SORT OF HAS A DOUBLE MEANING, WHICH COULD BE NASTY OR POINT TOWARDS AN IDEA OR A SENSE THAT OLDER PEOPLE ARE ENTERING SOCIETY.

THAT WAS SOMETHING THAT WAS REALLY INTERESTING WHEN STARTING TO WRITE THIS BOOK BECAUSE I FEEL LIKE NOT ONLY WAS THAT COMING INTO THIS TOPIC WITH MY GRANDMOTHERS, BUT I ALSO FELT LIKE ALL OF A SUDDEN, THERE IS THIS REALLY SENTIMENT IN THE AIR.

THIS ANTIBOOMER RHETORIC, WHICH HAS BEEN AROUND FOR A WHILE, AND I'M REMEMBERING IN THE BEGINNING OF THE PANDEMIC.

PEOPLE WOULD TALK ABOUT THE BOOMER REMOVER THAT COVID WAS.

BUT ALSO, YOU KNOW, JUST THIS IDEA, WHICH IS KIND OF AN OLD CURRENT IN AMERICAN LIFE OF OLDER PEOPLE BEING A DRAIN ON SOCIETY AND SPECIFICALLY TAKING RESOURCES AWAY FROM YOUNGER PEOPLE.

THERE IS ACTUALLY A LONG HISTORY OF THIS TYPE OF ARGUMENT IN AMERICAN CULTURE AND AMERICAN POLITICS.

SOCIAL SECURITY PROGRAMS AND MEDICARE PROGRAMS, AND I THINK IT VERY OFTEN HAS BEEN USED ACTUALLY TO FIGHT AGAINST SOCIAL PROGRAMS AND SOCIAL WELFARE PROGRAMS IN GENERAL.

>> IT IS A NATIONAL MEDIAN COST FOR SEMI-PRIVATE ROOM IN A NURSING HOME WAS $110,000 A YEAR IN 2025.

HELP IRANIANS KIND OF EXPLAIN THE LAY OF THE LAND HERE.

HOW DID THIS BECOME A FOR PROFIT INDUSTRY?

WHO OWNS IT?

WHO IS PROFITING?

GIVE ME AN IDEA OF WHEN PEOPLE GET OLD IN THIS COUNTRY IN GENERAL WHAT IS HAPPENING TO THEM AND WHERE ARE THEY GOING?

>> YEAH, SO MEDICARE WAS PASSED IN THE LATE 60s.

AND WITH THE PASSAGE OF MEDICARE, THERE WAS A HUGE SUDDEN SPRINGING UP OF NURSING HOMES, AND THE NURSING HOME INDUSTRY.

A LOT HAS CHANGED KIND OF LIKE CLIFF NOTES VERSIONS.

THERE WAS A MOVEMENT, PARTICULARLY IN THE 70s IN RESPONSE TO CONDITIONS IN THESE EARLY NURSING HOMES TO MAKE SURE NURSING HOMES WERE ACTUALLY PLACES THAT OFFER GOOD QUALITY CARE AND DIDN'T, IN FACT MAYBE EVEN GET PEOPLE MORE SICK THAN THEY WERE WHEN THEY ENTERED AND WERE, YOU KNOW, SOLID PLACES IN WHICH AN OLDER PERSON WITH DISABILITY COULD RECEIVE QUALITY CARE.

SINCE THEN, THERE'S BEEN ASSISTED LIVING FACILITIES IN THE RISE OF THE LIVING FACILITIES.

SO WITH NURSING HOMES, GENERALLY YOU PAY FOR THOSE VIA MEDICAID.

YOU HEAR ALL THESE STORIES, RIGHT, ABOUT PEOPLE HAVING TO SPEND DOWN IN ORDER TO QUALIFY FOR MEDICAID IN ORDER TO ENTER A NURSING HOME.

WHAT THAT MIGHT MEAN IS YOU MIGHT HAVE TO SELL YOUR HOUSE IN ORDER TO GET INTO A NURSING HOME.

NURSING HOMES COULD BE FOR PROFIT.

THEY COULD BE NON-PROFIT.

THERE'S A WHOLE RANGE OF THEM.

THEY'RE NOT, YOU KNOW, YEUN FORMALLY BAD OR YEUN FORMAL UNIFORMALLY.

THERE'S PRIVATE EQUITY NOW IN THAT SPACE.

ASSISTED LIVING IS ANOTHER PART OF THAT LANDSCAPE.

WITH ASSISTED LIVING, YOU HAVE TO GO WITH WHAT'S CALLED PRIVATE PAY.

IF YOU'RE ENTERING AN ASSISTED LIVING GENERALLY SPEAKING.

IT'S NOT ALWAYS THE CASE, BUT VERY MUCH THE MAJORITY OF THE CASE OF THE TIME, YOU'RE PAYING OUT OF YOUR OWN POCKET.

THESE PLACES COULD BE EXPENSIVE.

>> GIVE ME AN IDEA OF HOW MUCH.

>> ANYWHERE FROM PROBABLY LOWER END, $5,000 A MONTH TO WAY, WAY HIGHER THAN THAT.

THERE IS ALSO WHAT ARE CALLED CONTINUING CARE RETIREMENT COMMUNITIES, WHICH THAT'S THE TYPE OF THING SOMETIMES PEOPLE THINK OF, YOU KNOW, WHEN THEY THINK OF AGING IN A REALLY NICE PLACE.

YOU ENTER, YOU PAY A LOT OF MONEY.

YOU ENTER AT A CERTAIN AGE THAT YOU AGREED UPON, KIND OF CONTRACTUALLY WITH THIS PLACE, AND THEN YOU SORT OF AGE THERE WITH WHATEVER YOUR BODY DECIDES TO DO.

MAYBE YOU NEED TO GO INTO A MEMORY CARE FACILITY.

MAYBE YOU DON'T NEED TOO MUCH HELP.

EITHER WAY, YOU'RE KIND OF SURROUNDED BY PEOPLE WITH ALL SORTS OF EXPERIENCES OF OLDNESS IN THERE.

AND THEN FINALLY, AGING IN PLACE.

WHAT THAT TERM TENDS TO MEAN IS YOU'RE AT HOME, AND THAT YOU'RE NOT IN A FACILITY OF SOME KIND.

YOU ARE AGING IN A PLACE OF YOUR OWN KIND OF DESIRE AND MAYBE FAMILIARITY.

SO THERE'S BEEN AN INCREASE IN KIND OF STATE SUPPORT IN SOME WAYS FOR THAT OPTION.

THERE ARE CERTAIN PLACES THAT, YOU KNOW, HELP YOU INSTALL GRAB BARS IN YOUR BATHROOM, IF THAT IS SOMETHING YOU NEED.

OR PROVIDE YOU WITH REIMBURSEMENT FOR CARE TAKING, CARE GIVING SERVICES.

PEOPLE COMING INTO YOUR HOME.

>> THERE IS MEDICARE, AND THAT IS, YOU KNOW, THE OPTION THAT SO MANY PEOPLE GET BECAUSE THEY'RE NOT QUALIFYING.

THEY DON'T HAVE LOW ENOUGH INCOME FOR MEDICAID.

WITHIN MEDICARE, THERE'S A BIG FORK IN THE ROAD OF MEDICARE AND MEDICARE ADVANTAGE PLANS.

FOR MOST PEOPLE, AGAIN, THAT ARE NOT IN THAT PART OF LIFE YET, HAVEN'T DONE THE HOMEWORK.

WHAT'S THE BIG DIFFERENCE AND WHAT'S HAPPENED TO THIS?

>> THAT'S A GREAT QUESTION.

SO FIRST OF ALL, I'LL JUST NOTE THAT MEDICARE DOES NOT COVER LONG-TERM CARE.

THIS IS SOMETHING THAT VERY OFTEN SURPRISES EVEN OLDER PEOPLE THEMSELVES WHEN THEY GET TO A MOMENT OF NEEDING TO SUDDENLY PAY FOR LONG-TERM CARE.

SO THAT'S A REALLY KIND OF IMPORTANT BASIC FACT HERE.

MEDICARE ADVANTAGE IS WHAT I WOULD CALL THE PRIVATIZED ARM OF MEDICARE.

SO MEDICARE, AS YOU SAID, IT'S A PUBLIC PROGRAM.

THERE'S ONE MEDICARE.

THERE ARE ABOUT 4,000 MEDICARE ADVANTAGE PLANS.

AND WHAT THESE ARE ARE INSURANCE COMPANY BROKERAGE PRIVATE PLANS THAT STILL BILL MEDICARE, THE PUBLIC INSURANCE OPTION FOR PEOPLE FOR THEIR SERVICES.

MEDICARE ADVANTAGE PLANS HAVE BEEN REPORTED, YOU KNOW, TO BE DRAINING THE MEDICARE FUND, PARTICULARLY COMING FROM A NEW YORK TIMES REPORT ON IT.

INSURANCE COMPANIES THAT ARE USING AND SELLING MEDICARE ADVANTAGE PLANS, DEVELOPING THESE KIND OF SYSTEMS TO MAKE PATIENTS APPEAR AS SICK AS POSSIBLE AND THEN BILL ACCORDINGLY.

DENIALS OF CARE IN MEDICARE ADVANTAGE PLANS ARE RELATIVELY HIGH.

OFTEN MEDICARE ADVANTAGE PLANS ARE HEAVILY MARKETED TO PEOPLE AND PARTICULARLY, I SAW A STUDY THAT UNDERLINES THEY'RE VERY OFTEN MARKETED TO BLACK AND HISPANIC PATIENTS.

THEY ALSO ARE VERY OFTEN INVOLVING WHAT WE ARE PROBABLY ALL FAMILIAR WITH AT THIS POINT, THE PRIOR AUTHORIZATION THAT YOU NEED TO BE AUTHORIZED BY YOUR DOCTOR OR YOUR INSURANCE COMPANY RATHER FOR A PARTICULAR PROCEDURE BEFORE THEY DECIDE WHETHER OR NOT THEY'RE GOING TO REIMBURSE YOU.

A LOT OF REPORTING HAS BEEN DONE ON THIS THAT MEDICARE ADVANTAGE PLANS, THERE ARE MANY STORIES OUT THERE ABOUT PEOPLE SUDDENLY REALIZING THEIR SURGERY ISN'T GOING TO BE COVERED BY THIS PLAN THAT HAS OFFERED THEM ALL OF THESE WONDERFUL FREEBIES.

THEY COULD BE ANYTHING FROM INCREDIBLY AFFORDABLE AND CHEAP TO INCREDIBLY EXPENSIVE.

I WOULD SAY THE PERSONALIZED PRIVATIZED VERSION OF MEDICARE.

SO YOU CAN REALLY KIND OF CHOOSE ALMOST AN A LA CARTE TYPE OPTION, WHAT YOU WANT FROM YOUR INSURANCE PLAN, WHETHER OR NOT IT'S GOING TO WORK FOR YOU DOWN THE ROAD, YOU KNOW, FINGERS CROSSED.

>> HOW DOES AGING IN THE OPTIONS YOU HAVE IN AMERICA DIFFER BASED ON YOUR RACE OR YOUR INCOME LEVEL OR YOUR GENDER?

>> WELL, STATISTICALLY, THE PEOPLE WHO TEND TO MAKE IT TO OLD AGE ARE WHITE WOMEN.

SO THAT'S A PRETTY IMPORTANT FACT TO CONSIDER.

IN MY BOOK, A REVIEWER JUST POINTED THIS OUT, WHICH I THOUGHT WAS A REALLY SMART POINT.

THAT A LOT OF MY SUBJECTS ARE THE PEOPLE WHO I'M SPEAKING WITH IN THE BOOK ARE WOMEN.

BUT YOUR CLASS REALLY, REALLY INFLUENCES YOUR EXPERIENCE AS AN OLDER PERSON.

SO, YOU KNOW, FOR INSTANCE, IF YOU'RE ON MEDICAID, THAT IS GOING TO WHITTLE YOUR OPTIONS IN A PARTICULAR DIRECTION WHEN IT COMES TO LONG-TERM CARE, YOU KNOW, THAT MEANS YOU'RE ELIGIBLE TO GET INTO A NURSING HOME.

BUT THAT DOESN'T NECESSARILY MEAN YOU'RE GOING TO BE GOING INTO AN ASSISTED LIVING FACILITY OR A CONTINUING CARE RETIREMENT COMMUNITY, BOTH OF WHICH ARE KIND OF THE PROVINCE OF MORE MONEY TO PEOPLE.

AND IT'S A PART OF MY BOOK.

YOU KNOW, I TOURED SOME OF THESE PLACES.

I HAD THIS STRANGE EMOTIONAL EXPERIENCE IN A CONTINUING CARE RETIREMENT COMMUNITY BECAUSE I JUST FELT LIKE NO ONE I KNOW IS GOING TO BE ABLE TO EXPERIENCE SOMETHING LIKE THIS.

THIS IS AMAZING.

IT'S BEAUTIFUL.

IT'S LIKE ALL OF THESE OLDER PEOPLE.

THERE WAS A WOOD WORKING SHOP.

THERE WAS A SWIMMING POOL.

THERE WERE PEOPLE MAINTAINING THE GARDENS OUTSIDE.

IT'S A PLACE WHERE RESIDENTS REALLY RUN THE PLACE.

IT'S LIKE VERY INSISTENT ON RESIDENT AUTONOMY AND SELF-DIRECTION.

AND I THOUGHT THIS IS THE IDEAL, YOU KNOW?

IF YOU'RE DECIDING TO LIVE IN A COMMUNITY RATHER THAN NECESSARILY AGE IN PLACE INSIDE YOUR OWN HOME.

AND YET, YOU KNOW, IT WOULD BE FINANCIALLY OUT OF REACH FOR NEARLY EVERYONE THAT I KNOW, MYSELF INCLUDED.

>> YOU KNOW, I WONDER IF --DID YOU FIGURE OUT WHY WE DON'T WANT TO TALK ABOUT AGING AS MUCH OR WHY?

WE JUST DON'T TALK ABOUT IT MORE.

IT'S NOT A PART OF THE SOCIAL CONVERSATION?

>> I THINK A RELUCTANCE TO TALK ABOUT DISABILITY IN PUBLIC LIFE.

YOU KNOW, AGING VERY OFTEN INCLUDES SOME LEVEL OF DISABILITY.

THAT'S SOMETHING A LOT OF PEOPLE STILL IN THIS COUNTRY FEEL UNSURE ABOUT HOW TO TALK ABOUT FOR THEMSELVES, YOU KNOW?

OR MAYBE FOR A LOVED ONE.

I THINK, YOU KNOW, A LOT OF INK HAS BEEN SPELLED ABOUT WHAT KIND OF YOUTH OBSESSED WE ARE IN THIS COUNTRY, WHICH I THINK IS TRUE.

BUT I THINK THERE IS ALSO A PRODUCTIVITY OBSESSION IN THIS COUNTRY.

BUT I THINK THERE IS A REAL DISCOMFORT THAT WAS RELAXED.

WITH STOPPING WORK AND HOW TO FEEL LIKE A MEMBER OF SOCIETY WHEN YOU'RE NO LONGER IN THE WORKFORCE.

AND MAYBE, YOU KNOW, YOU'RE NO LONGER IN THE WORKFORCE BECAUSE YOU HAVE A DISABILITY AND YOU'RE NOT, YOU KNOW, A PART OF THE WORKPLACE THAT YOU ONCE WERE.

OR MAYBE, MAYBE YOU'RE RETIRED.

OR MAYBE YOU'RE JUST IN A DIFFERENT LIFE PHASE.

>> WHEN YOU LOOK AT THIS UNIQUELY AMERICAN PROBLEM IN SOME WAYS.

IS THERE SOMETHING WE COULD ADOPT?

ARE THERE COUNTRIES DOING IT BETTER?

WHAT IS A GOOD IDEA WE COULD STEAL?

>> UM, WELL, TO BE HONEST, I WOULD JUST SAY UNIVERSAL HEALTHCARE ACROSS THE SPECTRUM WOULD BE A WONDERFUL PLACE TO START.

YOU KNOW, ONE OF THE THINGS I REALLY WISH WE COULD DO IN GENERAL IS JUST HAVE MORE INTERGENERATIONAL CONNECTION.

A PERSON WHO I LOOKED AT IN THE BOOK IS AN ACTIVIST, MAGGIE COWN.

SHE WAS A HUGE ADVOCATE, AND LIVED WITH YOUNG PEOPLE AS AN OLDER WOMAN FOR DECADES.

I SPOKE WITH SOME OF THEM WHO REMEMBERED WHAT THAT EXPERIENCE WAS LIKE FOR THEM SO MANY YEARS, YOU KNOW, AFTER THE FACT.

AND THEY FOUND IT TO BE TOTALLY LIFE CHANGING.

SO I THINK THAT'S SOMETHING A LOT OF OTHER COUNTRIES HAVE THAT.

WE ACTUALLY ALREADY DO HAVE SMALLER VERSIONS OF THAT HAPPENING IN THE UNITED STATES IN VARIOUS CITIES.

BUT I THINK IN GENERAL, YOU KNOW, MAYBE IF WE COULD TALK ABOUT IT ON AN INDIVIDUAL LEVEL FOR A SECOND, LIKE, YOU KNOW, THINKING OF YOURSELF AS SOMEONE WHO IDEALLY, AND I'M SPEAKING HERE AS A YOUNGISH PERSON, IS GOING TO GROW OLD.

LIKE I DON'T WANT TO PRECLUDE CONNECTIONS WITH OLDER PEOPLE CURRENTLY IN MY LIFE.

I WANT TO LEARN FROM THEM.

I WANT TO CONNECT WITH THEM.

I WANT TO BE SURPRISED AND CHANGED AND MOVED BY THEM IN THE SAME WAY I COULD DO FOR THEM.

AND THE THEN I THINK MORE THAN ANYTHING, LIKE TRYING TO THINK ABOUT DISSOLVING WALLS BETWEEN OLDER PEOPLE AND YOUNGER IS SOMETHING TO REALLY THINK THROUGH, PARTICULARLY AS YOUNGER PEOPLE WHO HAVE REALLY BEEN STEEPED IN, I WOULD SAY, A LOT OF ANTI-OLD PERSON RHETORIC FOR MANY YEARS NOW.

>> THE BOOK IS CALLED "AGING OUT. "

AUTHOR, LUCY SCHILLER, THANKS FOR YOUR TIME.

>> THANKS FOR HAVING ME.