>>> LOOKING AFTER LOVED ONES IN NEED MAY SEEM LIKE A SIMPLE DECISION, BUT CARE GIVING, AS SO MANY OF YOU KNOW, IS NO SMALL TASK.

THOSE THAT DO IT, YES, USUALLY ARE WOMEN AND ARE OFTEN FORCED TO MAKE MAJOR LIFE CHANGES WITH VERY LITTLE SUPPORT.

IN HER NEW BOOK "WHO CARES, THE HIDDEN CRISIS OF CARE GIVING AND HOW WE SOLVE IT."

EMILY SHARES HER STORY OF BEING THE SOLE CAREGIVER FOR HER MOTHER AND SHE STRESSES WHY GOVERNMENTS NEED TO VALUE THIS KIND OF VITAL WORK.

>> THANK YOU SO MUCH FOR JOINING US.

>> THANK YOU SO MUCH FOR HAVING ME.

>> I HAVE TO SAY THAT A NUMBER OF COLLEAGUES OF MINE READ YOUR BOOK, AND WE ALL HAD THE SAME REACTION, WHICH IS WE ALL FOUND OURSELVES HAVING TO TAKE BREAKS BECAUSE IT WAS JUST TOO -- IT WAS JUST TOO REAL.

IF IT'S NOT TOO PAINFUL EVEN NOW, TELL US YOUR PERSONAL STORY AS BRIEFLY AS YOU CAN.

>> SO MY MOM, SHE GOT CANCER.

SHE HAD THAT CLASSIC EXPERIENCE OF FEELING MORE AND MORE TIRED.

AT THAT TIME SHE WAS A POWERFUL, BUSY WOMAN AROUND 60.

UNFORTUNATELY SHE HAD LEUKEMIA AND LYMPHOMA.

SO SHE WAS EXTREMELY UNWELL FOR THREE OR FOUR YEARS.

AND IN AMONGST ALL OF THIS SHE HAD CHEMOTHERAPY, STEM CELL TRANSPLANT AND BECAUSE SHE'S SINGLE, BECAUSE MY SISTER HAS LITTLE KIDS I WAS THE PRIMARY DWIFR.

I WAS A CLASSIC YOUNG WOMAN'S LIFE.

I WAS BUILDING A CAREER IN SOMETHING I FELT VERY PASSIONATE ABOUT AND SUDDENLY IT WAS EFFECTIVELY LIKE I BECAME A PARENT OVERNIGHT FOR A PARENT IN A VERY SAD SITUATION.

IT MADE ME REALIZE, THIS IS HAPPENING EVERYWHERE AND NOBODY IS TALKING ABOUT IT.

>> I THINK THERE ARE THOSE WHO WOULD SAY WHY DON'T YOU JUST PAY SOMEBODY TO TAKE CARE OF YOUR MOM IN THOSE YEARS WHEN SHE WAS REALLY DECLINING?

>> YEAH.

SO, IT'S ACTUALLY A VERY COMMON ASSUMPTION THAT YOU CAN ADDRESS THE CARE OF YOUR LOVED ONES BY PAYING SOMEONE, BY OUTSOURCING IT.

YES?

ONE OF THE THINGS I'M VERY CLEAR ABOUT IN THE BOOK IS I SAY SHE HAD CANCER AND IT SOUNDS LIKE ONE EVENT AND IT CHANGED EVERY WEEK, EVERY MONTH.

THERE ARE INFECTIONS.

THERE ARE REJECTIONS OF TREATMENT.

THERE'S DEPRESSIONS.

THERE'S SUDDEN BODILY BITS NOT FUNCTIONING OR SOMETHING CHANGES.

ALSO, LOTS OF PEOPLE WHO NEED CARE PREFER TO HAVE FAMILY MEMBERS DO T RIGHT?

OR THEY MIGHT SAY THEY'D LIKE PAID CARE WORKERS BUT THEY PRETEND THEY DON'T CARE FOR A REALLY LONG STRETCH TIME.

YOU HAVE TO DO IT WHILE YOU WAIT FOR THEM TO COME TO TERMS ON THEIR OWN VULNERABILITY.

A LOT OF PEOPLE WHO CAN'T SPEAK FOR THEMSELVES, LITERALLY CAN'T SPEAK OR HAVE COGNITIVE IMPAIRMENTS.

YOU DO NEED TO DO QUITE A LOT OF WORK NAVIGATING SYSTEMS FOR THEM, CHECKING THINGS ARE BEING DONE AND SO ON.

THE FINAL REASON IS LUCK.

SO I WOULD HAVE WANTED TO BE WITH HER MORE SUPPORTED THAN I WAS, BUT I ABSOLUTELY WOULDN'T HAVE FOREGONE IT.

>> ONE OF THE THINGS I THINK YOU CAPTURE SO WELL IN YOUR BOOK IS HOW -- AND IN OTHER WRITINGS HOW YOUR WORLD GETS SO SMALL.

FROM THE BEDROOM TO THE BATHROOM, FROM THE HOUSE TO THE DOCTOR OR TO THE HOSPITAL.

I JUST WONDER HOW YOU REALIZED THAT, WAS IT WHILE IT WAS OVER OR WHILE TVs GOING ON?

>> VERY MUCH WHILE IT WAS GOING ON.

I WAS VERY AWARE FRIENDS WERE LIVING NORMAL LIVES AND I WASN'T.

A COUPLE OF TIMES I WOULD ARRANGE TO GO ON HOLIDAYS WITH FRIENDS, CLIMBING IN SCOTTISH MOUNTAINS AND THINGS LIKE THAT, AND WASN'T ABLE TO GO BECAUSE MY MOM HAD A TURN FOR THE WORSE OR I COULDN'T GET SOMEONE TO COVER ME TO LOOK AFTER HER.

IT WAS VERY APPARENT IN A VERY PRACTICAL, VERY PHYSICAL BUY HAVE SHRUNK AND CHANGED.

I THINK THIS IS WHY CAREGIVERS END UP SO ISOLATED, RIGHT?

THE SHAPE OF OUR LIVES IS SO DIFFERENT TO WHAT IS CONSIDERED THE NORM.

WE ALMOST DON'T EVEN KNOW ANYMORE HOW TO TALK TO PEOPLE ABOUT WHAT OUR DAILY LIFE LOOKS LIKE.

>> AS WE MENTIONED, THE TITLE OF YOUR BOOK IS "WHO CARES."

WHO ARE WE SPEAKING ABOUT HERE?

WHEN WE TALK ABOUT CARE GIVING, WHO ARE WE TALKING ABOUT?

>> LOVED ONES WHO ARE LONG TIME UNWELL, DISABLED, FRAIL ACTUALLY.

HISTORICALLY THIS HAS BEEN A SMALLER PROPORTION OF CARE GIVING THAN PARENTING WHICH MIGHT BE A PART OF PARENTING.

NOWADAYS WITH LONGEVITY, AGING POPULATIONS, IT'S BECOMING MUCH MORE PREVALENT AND PEOPLE ARE CARING FOR LONGER NOW.

PEOPLE ARE LIVING WITH ADVANCED DEMENTIA FOR 20 YEARS OR SO NOW.

THE SCALES ARE SWINGING IN THE OTHER DIRECTION AND WE HAVEN'T CAUGHT UP WITH IT.

WE'RE TALKING ABOUT MILLIONS OF PEOPLE IN EACH COUNTRY.

56 MILLION ROUGHLY IN THE U.S.A. ABOUT 6 MILLION IN MY U.K., AND ALSO THE ANSWER TO INJURY QUESTION, WHO KEARSE, LATE?

I SHOULD SUBTITLE THE BOONL, WOMEN.

THEY'RE DOING THE MAJORITY OF THIS KIND OF CARE.

AND THAT'S ALSO TRUE IN CAN YOU BE TRIS LIKE SWEDEN WHERE THEY HAVE VERY HIGH RATES OF GENDER EQUALITY BY OTHER MEASURES.

IN THE BOARD ROOM, IT'S STILL WOMEN WHO ARE DOING MOST OF THIS CARE.

IT'S DEFINITELY AN ISSUE THAT IS BOTH OF KIND OF FEMINISM AND OF POLITICS MORE BROADLY.

IT'S VERY MUCH RELATED TO THE CHILD CARE ISSUES.

THE IDEA WE NEED AN INCOME AND WE NEED TO LOOK AFTER PEOPLE.

WE HAVE NOT MANAGED TO SORT THAT EQUATION OUT AT ALL EVEN THOUGH IT'S FUNDAMENTAL TO THE SMOOTH RUNNING OF OUR SOCIETY.

>> WHY DO YOU THINK IT IS THAT WE HAVE NOT FIGURED THIS OUT, ESPECIALLY COUNTRIES THAT ARE WEALTHY IN SORT OF GLOBAL TERMS?

WHAT'S YOUR THEORY ABOUT WHY IT IS THAT IT'S SO LITTLE A PART OF OUR UNDERSTANDING OF OUR SOCIETY?

>> THERE ARE A FEW REASONS WHY WE'RE COMPLETELY FAILING ON IT, AND ONE OF THEM IS THE TYPE OF CAPITOLISM WE HAVE.

SO ECONOMISTS WOULD SAY CAPITOLISM AS WE'VE CURRENTLY CONSTITUTED IT WORKS ON THE BASIS OF OUTSOURCING THE THINGS THAT ARE NEEDED TO KEEP REPRODUCING AND TAKING CARE OF LIFE, RIGHT?

NOT COST IN THOSE THINGS AND WE CAN SEE THAT VERY, VERY CLEARLY IN OUR WORKING POLICIES.

WE DON'T HAVE PAID LEAVE TO TAKE CARE OF CHILDREN OR FOR CAREGIVERS OF SICK LOVED ONES.

THEY'RE NOT HAVING TO PRIETS IN THE COSTS OF THAT SO PROFIT IS ABLE TO BE MADE WITHOUT HAVING TO PAY HEED TO THAT.

NOW ACTUALLY THANKFULLY THERE ARE VOICES IN BUSINESS SPACES THAT ARE KIND OF SEEING THE LIGHT, PERHAPS BECAUSE THEY'RE HAVING EXPERIENCES IN THEIR OWN WORLDS THAT ARE TELLING THEM THEY'RE UNTENABLE.

PERHAPS BECAUSE THR WOMEN LEADERS MORE AND MORE.

PERHAPS BECAUSE THERE ARE ANALYSIS THAT SAY THERE ARE GOOD REASONS TO DO IT FROM A PRODUCTIVITY AND TURNOVER PERSPECTIVE.

THERE ARE GLIMMERS OF HOPE.

THERE'S ALSO THE PROBLEM THAT WE HAVE A VERY GENDERED PERSPECTIVE ON THIS OF WHO OUGHT TO BE PROVIDING CARE FOR SOMEONE.

IT'S NOT FOR ME TO SAY WHO SHOULD DO WHAT WITH THEIR LIFE.

I WOULD NEVER HAVE WANTED TO CARE FOR MY MOM.

I WISH SHE WOULD HAVE NOT BEEN SICK BUT IT IS NOT SOMETHING I WOULD HAVE GIVEN TO SOMEONE ELSE TO DO.

HOWEVER, WE DO NEED TO UNDERSTAND THAT PEOPLE PROVIDING CARE IN THE HOME, THAT'S NOT WITHOUT A COST, RIGHT?

THERE IS A COST THERE AND IT'S A COST BEING BORNE SILENTLY BY WOMEN AROUND THE WORLD.

IT STRIPS US OF INCOME.

IT STRIPS US OF PENSION SAVINGS.

WE WILL HAVE WOMEN WHO ARE ABSOLUTELY IMPOVERISHED BECAUSE THEY CARED FOR SOMEONE WHO WAS A LOVED ONE.

>> I WAS STRUCK BY THE REPORTING ON THIS.

WOULD YOU SHARE A COUPLE OF STORIES THAT REALLY STRUCK YOU?

>> YEAH.

THANK YOU.

IT WAS A VERY IMPORTANT THING, I FELT, TO DO A GLOBAL PORTRAYAL OF IT.

ONE OF THE PEOPLE I ENCOUNTERED WAS A YOUNG WOMAN CALLED IISHA.

WE'RE ABOUT THE SAME AGE, WHICH IS QUITE BEAUTIFUL.

SHE'S IN KATHMANDU IN NEPAL AND I WAS ALL THE WAY IN LONDON.

COMPLETELY DIFFERENT WORLDS, DIFFERENT CULTURES, THOUSANDS OF MILES APART.

IISHA HAD HELPED HER MOM CARE FOR HER DAD WHO HAD CANCER AND THEN HER MOM HAD GOT CANCER SHORTLY AFTER THAT AND SHE HAD BEEN HER MOM'S PRIMARY CAREGIVER.

SO WE HAD SORT OF HAD SIMILAR PATHS THOUSANDS OF MILES APART.

A SEE SHAH HAD BEEN MIDWAY THROUGH AN VERNE BEINGSAL ECONOMICS DEGREE.

LIKE MANY CAREGIVERS, SHE LOST A DREAM THAT SHE HAD.

THAT IS ONE OF THE MAJOR EFFECTS OF OUR FAILURE TO SUPPORT CAREGIVERS.

SHE HAD MAJOR PHYSICAL REPERCUSSIONS FROM THE EXTREME STRESS SHE WAS UNDER.

SHE HAD A BRAIN ANEURYSM A YEAR AFTER CARING FOR HER MOM.

SHE WAS IN A COUNTRY WHERE THERE'S LESS GOVERNMENT PROVIDED SERVICES THAN THE U.K. OR THE U.S., YOU KNOW?

SO IT RELATELY HAD BEEN COMPLETELY ENGULFING FOR HER AND SHE WAS ON HER WAY OUT OF THAT WHEN WE MET.

>> WHAT WOULD IT LOOK LIKE IF UNDERSTANDING THAT CARE IS GOING TO BE PART OF YOUR LIFE AT SOME POINT WERE NORMAL, WERE EXPECTED?

WHAT WOULD THAT LOOK LIKE?

>> I THINK THERE'S LAYERS ON IT.

THE ON THE DAY-TO-DAY PERSONAL LEVEL, IT WOULD LOOK LIKE HAVING REAL STRONG BONDS OF PEOPLE WHO ARE AROUND YOU WHO MAY OR MAY NOT BE YOUR BIOLOGICAL FAMILIES.

WE NEED TO STOORT CULTIVATING THE ART OF CREATING BONDS WITH PEOPLE WHO ARE AROUND US AND CAN STEP IN AND SUPPORT US.

THAT'S TIME AND ENERGY AND WE DON'T HAVE THAT IF WE'RE ALL WORKING ALL THE TIME.

ONE OF THE REALLY KEY PARTS OF THIS IS TO REBALANCE WORK AND CARE, RIGHT?

TO DETHRONE FROM ITS PRIMACY IN OUR LIVES AND TO SAY, YOU ARE HUMAN.

YOU LOVE PEOPLE.

THOSE PEOPLE HAVE BREAKABLE BODIES.

THIS MEANS YOU CANNOT WORK ALL THE HOURS AND DAYS OF YOUR LIFE BECAUSE YOU'RE GOING TO NEED TO DO THINGS WITH KNOWS PEOPLE, WHETHER THEY'RE BABIES OR A KID WITH THE FLU FOR A WEEK OR A PARENT WITH DEMENTIA, YOU KNOW, IT'S ALL THROUGH OUR LIVES.

SO WE HAVE TO REBALANCE THIS.

I READ A REPORT FROM THE U.N. LOST TO CARE EVERY DAY.

HOW MANY CARE DAYS ARE LOST TO, WOULD, RIGHT?

BUT COMING BACK TO YOUR POINT, THERE ARE TRIALS OF FOUR DAY WORKING WEEKS THAT VOF THE SAME AMOUNT OF PAY AS PEOPLE HAD FOR FIVE DAYS.

NO LOSS IN PAY AND THEY ARE TAKING PLACE AROUND THE WORLD AND THEY ARE WORKING REALLY WELL BECAUSE PEOPLE WORK BETTER WHEN THEY WORK FEWER HOURS AND THERE ARE LOTS OF BUSINESSES DELIBERATELY PUTTING THAT INTO PLACE AND POLICY.

WE ALSO NEED TO HAVE CAREGIVERS INCOME, RIGHT?

IT'S SO CRAZY THE ONLY WAY YOU CAN GET PAID IS IF YOU GO AND ENROLL IN A HOME HEALTH CARE SIGNATURE A AND THEY CONTRACT YOU.

WE HAVE TO HAVE A GOVERNMENT SUPPORTED PROGRAM OF INCOME FOR MEME WHO NEED TO PROVIDE CARE.

WE ARE SEEING IN THE U.S. MORE STATES INTRODUCING PAID LEAVE FOR JOBS FOR CARE GIFRGS WHICH IS EXCITING.

THERE'S A MAN IN THE BOOK CALLED ERIC WHO CARED FOR HIS HUSBAND IN MINNESOTA.

ERIC EMAILED ME THREE DAYS AGO, HE SAID, EMILY, WE'VE WON PAID CAREGIVERS LEAVE HERE IN MINNESOTA.

I HAD TO TELL YOU.

IT IS HAPPENING.

IT'S HAPPENING IN LOTS OF STATES.

I THINK THESE THINGS ARE POSSIBLE BUT THEY WILL NOT BE POSSIBLE UNLESS WE ALL SHOUT FOR THEM.

THEY ARE THE TIREDEST.

THEY ARE THE CAREGIVERS.

WE NEED EVERYONE TO BE DOING AS WELL SO IT'S NOT ALL ON THOSE THAT ARE ALREADY BEING BROKEN BY THE SYSTEM WE HAVE TODAY.

>> I DON'T WANT TO GO INTO THE DETAILS, BUT WATCHING SOMEONE YOU LOVE WITHER AWAY IS SO HARD AND, YOU KNOW, YOU WERE THERE 24 HOURS A DAY 7 DAYS A WEEK FOR YEARS AND WHY IS IT YOU DIDN'T JUST WANT TO WALK AWAY?

WHAT MADE YOU WANT TO WRITE THIS LIFE FOR OTHER PEOPLE WHO ARE LIVING IT NOW.

>> FOR ME, I FEEL LIKE IT'S A MORAL OBLIGATION.

I AM MUCH MORE YOUNGER THAN THE NORM.

I THOUGHT, CAN I USE SOME OF MY LIFE FORCE?

I DON'T HAVE CHILDREN YET.

I HAVE THIS SPACE AND ENERGY WHERE I COULD DO THIS THING.

COULD I HELP MAKE A DIFFERENCE?

I COULDN'T SWITCH OFF THE KNOWLEDGE IN EVERY STREET, WORKPLACE, COMMUNITY THERE'S SOMEONE RIGHT NOW GOING THROUGH WHAT I WAS GOING THROUGH, YOU KNOW?

AND THAT FELT TO ME LIKE I HAVE TO WRITE ABOUT THIS.

I HAVE TO PUT THIS IN PEOPLE'S FACES BECAUSE THAT PAIN IS SO REAL TO ME.

IT WOULD HAVE FELT LIKE AN IMMORAL ACT NOT TO DO SO.

>> WHAT WAS THE HARDEST PART OF IT?

>> THE HARDEST PART OF MY EXPERIENCE WAS WATCHING HOW HARD IT WAS FOR MY MOM, IF THAT MAKES SENSE.

WATCHING HER BE SO DESPERATELY UNHAPPY TO BE DYING.

SHE GOT VERY SICK.

SHE WORKED VERY LONG HOURS HER WHOLE LIFE, SOMETIMES SIX DAYS A WEEK.

WORK, WORK, WORK, WORK, WORK.

SHE GOT SICK WHEN SHE WAS AT RETIREMENT AGE.

THE ONLY TIME SHE GOT SICK TO POTENTIALLY GO OUT AND ABOUT WHICH WAS A COUPLE OF MONTHS WHICH OVERLAPPED WITH THE SAME TIME OF THE U.K. LOCKDOWN.

SO I WITNESSED THE KIND OF DEPTH OF SUFFERING THAT'S TAUGHT ME A LOT, I WOULD SAY, ABOUT HOW I INTEND TO LIVE MY LIFE AND HOW I HOPE I'M ABLE TO LOOK BACK ON MY LIFE IF AND WHEN I COME TO A PLACE WHERE I AM HAVING TO WITNESS MY OWN INCAPACITATION IN THAT WAY.

>> SO BEFORE WE LET YOU GO, THERE IS ONE THING YOU SAY OVER IN THE BOOK.

IF YOU THINK THIS DOESN'T APPLY TO YOU, YOU'RE WRONG.

EVERYONE IS GOING TO LIVE THIS STORY AT SOME POINT, EVERYONE.

I WONDER WHO DO YOU HAVE IN MIND WHEN YOU SAY THAT?

>> A FRIEND OF MINE DESCRIBES THE BERK IN THE EARLY STAGES.

I ENCOUNTER PEOPLE WHO THINK THIS IS AN ISSUE THAT IS ABOUT ALL THE PEOPLE.

THIS IS SOMETHING ABOUT GERIATRICS OR PEOPLE WHO AREN'T THEM, AND I JUST WANT TO SHAKE THEM AND SAY, FOR THEIR OWN GOOD, YOU KNOW, THIS IS COMING TO YOU.

IF YOU THINK YOU'RE FREE TODAY, IF YOU THINK YOU'RE INDEPENDENT IN SOME KIND OF GRAND WAY, YOU'RE NOT.

IF YOU LOVE ANYONE AND THEY ARE IN A HUMAN BODY, YOU SHOULD EXPECT TO PROVIDE CARE AND IF YOU DON'T PAY ATTENTION NOW TO WHAT CARE LOOKS LIKE, YOU'RE GOING TO HAVE THE MOST HORRIFIC EXPERIENCE WHEN CARE DOES COME.

IN THE BOOK I'M SAYING, LISTEN TO US.

PLEASE MAKE THE CHANGE WE NEED.

>> WE THANK YOU SO MUCH FOR TALKING WITH US.

>> THANK YOU.