May 26, 2010: Gail Sheehy's Passages in Caregiving

 

>> Rooney: TONIGHT ON

"GREATER BOSTON," SHE HAS

CHANGED THE WAY MILLIONS

LOOK AT THE STAGES OF

THEIR LIVES.

NEW GAIL SHEEHY TAKES ON A

MOST PERSONAL ISSUE IN HER

NEW BOOK "PASSAGES IN CARE

GIVING."

AND THE RENEWED PASSAGE TO

BAR ILLEGALS FROM

RECEIVING STATE BENEFITS.

GOOD MORNING, SINCE THE

PUBLICATION OF PASSAGES

MORE THAN A QUARTER OF A

CENTURY AGO, GAIL SHEEHY

HAS BEEN INFLUENCING

PEOPLE ON HOW THEY VIEW

CERTAIN STAGES IN HER

LIFE.

SHE CHRONICLES CARING FOR

HER CANCER STRICKEN

HUSBAND.

THE BOOK IS CALLED

"PASSAGES IN CARE-GIVING,

TURNING CHAOS INTO

CONFIDENCE."

AND GAIL SHEEHY IS HERE.

>> IT IS SO NICE TO BE

WITH YOU.

>> Rooney: I HAVE TO SAY

THERE ISN'T ANYBODY IN THE

WORLD WHO HASN'T

EXPERIENCED THIS OR WHO

WILL EXPERIENCE THIS WITH

A APPARENT -- WITH A

PARENT -- IN THIS CASE, IT

WAS WITH YOUR HUSBAND.

AND IT IS A DISCUSSION

NOBODY HAS.

WHY NOT?

>> NONE OF US ARE

PREPARED.

MY HUSBAND AND I HAD A

WHIRLWIND COURTSHIP OF 17

YEARS.

AND WE SHOULD HAVE SAID

WHO IS GOING TO TAKE CARE

OF WHO.

BUT WE NEVER DID.

THE DAY I GOT THE CALL I

WAS IN THE BEAUTY SHOP,

AND I GOT THE CALL FROM MY

HUSBAND'S ONCOLOGIST.

AND HE SAID IT IS NOT

BENIGN.

THE CYST WE HAD REMOVED

TWO YEARS AGO.

AND THE ONCOLOGIST SAYS

THEY RECUT IT, AND IT IS

CANCER.

AND YOU HAVE THIS GIANT IN

YOUR MIND, SUDDENLY

REDUCED TO A JOHNNIE COAT,

AND IT TAKES A LONG TIME

FROM THE SHOCK UNTIL YOU

GET INTO THE NEW NORMAL TO

BEGIN TO REALIZE YOU HAVE

A NEW ROLE IN YOUR LIFE.

YOU NOW ARE WHAT WE CALL A

FAMILY CARE-GIVER.

BUT MOST WOMEN DON'T SEE

THEMSELVES LIKE THAT.

>> Rooney: IT IS REALLY

THE ROLE OF AN ADVOCATE.

EVERYTHING YOU SAY, THE

PATIENT TUNES OUT.

THEY'RE NOT LISTENING.

AND THEY'RE THE ONES THAT

ARE SICK, AND THEY FEAR

THEY'RE DYING, LET'S FACE

IT.

>> RIGHT.

>> Rooney: SO IT IS THE

OTHER PERSON ABSORBING THE

INFORMATION ABOUT WHAT THE

MEDICATIONS ARE AND WHAT

THE PROCEDURE IS.

YOU NEED THAT ADVOCATE

THERE.

>> EXACTLY.

THIS IS WHY SO MANY PEOPLE

ACCEPT THE FIRST CONSULT.

YOU'RE IN SHOCK.

YOU'RE TRYING TO MOBILIZE.

AND YOU'RE SCAVENGING ALL

YOU CAN KNOW ABOUT THIS

ILLNESS.

AND NOW YOU'RE SITTING,

LIKE WE WERE IN NEW YORK,

AT ONE OF THE BEST

INSTITUTIONS, AND THE

DOCTOR SAID, THERE IS ONLY

ONE TREATMENT FOR YOU,

CLAY.

IT IS RADICAL NECK

SURGERY, AND EVEN IF THE

VOICE BOX ISN'T INVOLVED

WITH THE CANCER, IT MAY

HAVE TO BE REMOVED.

BUT YOU CAN DISCUSS THE

DETAILS WITH THE SURGEON.

>> Rooney: BUT DIDN'T HE

APPRECIATE THE FRANKNESS,

OTHER THAN THE DANCING

AROUND?

>> NO, BUT THE POINT IS MY

HUSBAND WAS SPEECHLESS.

HE IS A COMMUNICATOR.

I STARTED TO ASK

QUESTIONS, BUT BECAUSE I

WAS JUST THE CARE-GIVER,

HE WON'T LOOK AT ME.

HE WOULD LOOK AT CLAY AND

SAY THIS IS YOUR ONLY

OPTION.

AND I SAID TO MYSELF,

THERE IS NEVER ONLY ONE

OPTION.

AND WE WERE HANGING FOR

THE NEXT FEW WEEKS.

AND WE ASKED FRIENDS WHO

KNEW PEOPLE AND HAD THIS

KIND OF CANCER.

AND THEY SENT US TO MASS

GENERAL, TO A FAMOUS

RADIATION ONCOLOGIST, AND

HE TREATED CLAY, AND

EVERYTHING TURNED OUT

FINE.

AS HE WAS EXAMINING MY

HUSBAND, IN HIS CHINESE

ACCENT, HE SAID, "I HEAR

YOUR HUSBAND IS BIG SHOT

IN NEW YORK, BUT THERE

THEY WANT TO CUT OUT HIS

THROAT.

YOU COME TO ME."

AND I SAID, YOU KNOW HOW

THA ARE IN NEW YORK,

THEY'RE CUT-THROATS.

>> Rooney: IT FREAKS YOU

OUT, THE INTERNET, AND

EVERY WORST-CASE SCENARIO,

AND IT SOUNDS MORE LIKE

THIS THAN THAT, AND

SUDDENLY YOU BECOME THE

EXPERT, AND THAT DRIVES

DOCTORS CRAZY, TOO.

>> I ADVOCATE GETTING A

RESEARCH GUIDE IN YOUR

AREA OF ILLNESS BECAUSE

THEY CAN MATCH WHAT KINDS

OF TREATMENTS ARE OUT

THERE, AND PROTOCOLS THAT

MIGHT BE POSSIBLE TO THE

PERSON'S AGE, SEX, AND

BIOLOGY.

AND IT CUTS THROUGH SO

MUCH.

BECAUSE WE ARE NOT

PREPARED TO GO THROUGH

MEDLINE AND PICK OUT WHAT

ACTUALLY APPLIES TO THE

SITUATION THAT WE'RE IN.

BUT, YOU KNOW, THIS IS NOT

ONLY ABOUT MY STORY --

>> Rooney: NO.

NO.

BECAUSE SO MUCH OF WHAT

WE'RE DEALING WITH NOW IS

ALZHEIMER'S AND DEMENTIA.

AND ALL OF THESE PERSONAL

STORIES, AS YOU TELL THE

TALE OF YOUR OWN PERSONAL

STORY.

IT AFFECTS EVERY FAMILY?

>> IT DOES.

THROUGH MANY DIFFERENT

STAGES.

A LOT OF PEOPLE GET TO THE

POINT WHERE DAD CAN'T TAKE

CARE OF MOM, OR DAD PASSES

ON AND MOM IS THERE.

AND THE PEOPLE AROUND MOM

KIND OF DIE OFF OR MOVE

AWAY.

AND WHAT ARE YOU GOING TO

DO WITH MOM?

AND IF YOU LIVE DISTANCE,

WHAT I OFTEN SAY IS HAVE

THE CONVERSATION WITH YOUR

SIBLINGS BEFORE THE

CRISIS.

E-MAIL YOUR SIBLINGS AND

SAY, MOM AND DAD ARE

GETTING OLDER.

THEY'RE GOING TO NEED SOME

MORE HELP.

WHAT ARE YOU GOOD AT.

LET'S ALL E-MAIL AND SAY

THIS IS WHAT I'M GOOD AT.

MAYBE ONE IS A LAWYER, AND

ONE IS A SOCIAL WORKER.

THEY ALL KNOW DIFFERENT

PARTS OF THE HEALTH CARE

SYSTEM OR NOTHING.

MAYBE SOMEBODY IS RETIRED,

OR SOMEONE ELSE HAS MORE

MONEY, AND THEY CAN GO

VISIT MOM AND DAD MORE

OFTEN.

>> Rooney: AND AS YOU

OFTEN WRITE, THESE ARE THE

KINDS OF ISSUES THAT BREAK

UP FAMILIES.

IT OFTEN FALLS ON THE MORE

RESPONSIBLE SIBLING OR

CHILD WHO LIVES CLOSER BY,

AND THEN THE ENTIRE BURDEN

IS ON THEM, AND OFTENTIMES

FINANCIALLY AS WELL.

>> TAG, YOU'RE IT.

>> Rooney: AND IT'S

USUALLY THE WOMEN.

MEN, WHO ARE ACTUALLY IN

THE HEALTH CARE FIELD,

OFTEN WHO ARE BROTHERS,

DON'T SEE -- I CAN'T BE

INVOLVED WITH THIS

HANDS-ON STUFF.

IT COMES DOWN TO, AND I

HAVE TOLD SEVERAL STORIES

ABOUT THIS -- HAVING A

FAMILY MEETING.

YOU SHOULD HAVE A NEUTRAL

MEDIATOR, THE

GERIATRITION, AND OR A

SOCIAL WORK.

THEY CAN THEN DELIVER THE

NEWS TO EVERYBODY AT THE

SAME TIME.

DAD HAS MODERATE COGNITIVE

FAILURE.

HE CAN'T BE RESPONSIBLE

FOR LIFTING MOM IN AND OUT

OF THE CAR.

WE NEED EACH OF YOU TO

COME OVER AND BRING YOUR

CARS AND HAVE A TRAINING

DAY.

ALL CARS ARE A DIFFERENT

HEIGHT.

COME OVER, LEARN HOW TO

LIFT MOM AND GET HER IN

YOUR CAR.

AND MORE OF YOU CAN TAKE

HER OUT AND HELP HER GET

OUT OF HER DEPRESSION,

WHICH IS SO COMMON.

>> Rooney: FIRST OF ALL,

THE OLDER PEOPLE ARE

OBSTINATE OR THEY LIVE

FURTHER AWAY.

YOU WONDER, WHAT ARE THEY

EATING?

HOW ARE THEY GETTING

AROUND?

WHO IS CLEANING THE

APARTMENT?

IF YOU'RE NOT RIGHT ON TOP

OF THEM --

>> THEY'RE GOING TO

PRETEND EVERYTHING IS

FINE.

BECAUSE THEY ARE AFRAID IF

YOU COME AND SEE HOW

THINGS REALLY ARE, YOU MAY

TAKE AWAY THEIR

INDEPENDENCE.

WHAT YOU REALLY NEED TO DO

IS GO AND STAY WITH THEM

FOR A FEW DAYS AND SEE

WHAT IS IN THE

REFRIGERATOR, IS THE MAIL

AND THE MAGAZINES PILING

UP.

AND GENTLY BEGIN TO

SUGGEST HOW MAYBE SOME

NEIGHBORS COULD HELP.

MAYBE YOU GET A CARE

MANAGER.

THAT IS ONE OF THE MOST

VALUABLE NEW PROVISIONS.

A GEREATRIC CARE MANAGER.

HELPING WITH THE DRUGS OR

TAKING MOM AND DAD TO THE

DOCTOR.

STOPPING SOMETHING IN ITS

TRACKS BEFORE IT GETS TO

GOING TO THE E.R.

OR HIRING SOME PEOPLE TO

COME IN AND HELP LOOK

AFTER THEM OR HELP THEM

WITH MEALS AND MOBILITY.

AND TAKING THEM TO

DOCTOR'S APPOINTMENTS WHEN

YOU CAN'T BE THERE.

>> Rooney: WHAT DO YOU

THINK THE DIFFERENCE IS

DEALING WITH SOMEONE LIKE

YOUR HUSBAND, WHO WAS VERY

SHARP RIGHT UNTIL THE END.

HE WAS DYING OF CANCER,

WHICH IS DIFFERENT FROM

DEMENTIA.

IT'S MORE DIFFICULT IN A

WAY --

>> MUCH MORE DIFFICULT.

>> Rooney: HE SUFFERED

FROM THINGS LIKE

DEPRESSION, AND THEN HE

BECAME IMMOBILE TO A

POINT.

>> WELL, HE HAD A FEEDING

TUBE.

BUT YOU WANT TO KNOW

SOMETHING?

WE TEND TO THINK IF WE

LOSE SOME CAPACITY WE

CAN'T GO OUT ANYMORE, IT

IS TOO HUMILIATING.

BUT HE ACTUALLY HAD THAT

FEEDING TUBE FOR 10 YEARS.

AT ONE POINT I SAID, HEY,

I'M GETTING TIRED OF

EATING AT HOME.

I WANT TO SIT OVER

ROMANTIC CANDLELIGHT.

LET'S GO TO PARIS.

AND I WENT TO THE CHEFS

AND TOOK HIM ALL OF THE

BLENDERS, AND I SAID THIS

IS WHAT YOU HAVE TO DO SO

HE CAN ENJOY THE WONDERFUL

FOOD.

BUT HE ACCOMMODATED US AND

WE HAD A WONDERFUL

EVENING.

AND AFTER THAT WE WEREN'T

AFRAID TO GO OUT TO

RESTAURANTS OR A FRIEND'S

HOME.

NORMAL IS AS NORMAL DOES.

IF YOU CARRY IT OFF AS IF

YOU'RE NORMAL, OTHER

PEOPLE WILL GIVE YOU A

PASS.

WITH DEMENTIA, ONE OF THE

THINGS I WROTE ABOUT IN

THE BOOK, WHICH I WAS SO

HAPPY TO FIND, IS NOW

BECAUSE OF M.R.I.s, WE

CAN TELL THE BRAIN

IMAGING.

THERE ARE TWO PARTS OF THE

BRAIN THAT ARE LEAST

AFFECTED BY ALZHEIMER'S

ARE THE CREATIVITY AND

EMOTION.

AND EMOTION WE KNOW

BECAUSE WE KNOW THAT

PEOPLE WHO HAVE

ALZHEIMER'S CAN STILL BE

VERY OPINIONATED AND VERY

NOISY AS THEY GET OLDER.

BUT THE CREATIVITY NEVER

DIES.

AND SO JUST DO PAINTING

WITH THEM OR FINGER

PAINTING OR TAKE THEM TO

AN ART GALLERY WITH A

GROUP.

HOMES ARE DOING THAT NOW.

IT OFTEN WILL RECAPTURE

THE EMOTION AROUND A

MEMORY.

AND HELP TO RECONNECT THEM

TO YOU, THE CARE-GIVER.

>> Rooney: SO MANY

PEOPLE JUST WANT TO PUSH

IT OFF ON SOMEBODY ELSE.

IT'S TOO HARD.

ESPECIALLY IF IT IS A

PARENT.

THEY THINK, WAIT A SECOND,

I'M THE KID.

I CAN'T BE CHANGING YOUR

DIAPERS OR GETTING YOU

BATHED, OR THINGS LIKE

THAT.

IF IT IS THE HUSBAND'S

SPOUSE -- YOU'RE USED TO

THAT KIND OF INTIMACY.

BUT I THINK THAT'S WHAT

SOME PEOPLE GET HOME

HEALTH CARE AIDS BECAUSE

THEY NOT REALLY CONNECTING

WITH THE FAMILY ANYMORE.

>> I SORT OF DIFFER WITH

YOU ON THAT.

I NEVER DID INTIMATE CARE

OF MY HUSBAND WHEN HE

BECAME PRETTY MUCH

BEDRIDDEN.

I WAS THE ENTERTAINER.

I WAS THE ONE WHO COULD

TAKE HIM OUT TO THE JAZZ

CONCERT, AND WHEEL HIM TO

THE PHILHARMONIC, INVITE

FRIENDS OVER, AND GO ON A

CRAZY TRIP, AND SET UP ALL

OF THE PREPARATIONS SO HE

COULD BE IN THE COUNTRY

AND SIT ON THE PORCH AND

LOOK AT THE MOUNTAIN.

I WOULD TAKE AN AIDE ALONG

WITH ME, AND, OF COURSE, I

HAD TO PAY FOR IT, SO I

HAD TO KEEP WORKING.

>> Rooney: YOU DID

REALLY CREATIVE STUFF.

YOU MOVED TO CALIFORNIA

WITH CLAY?

>> THAT'S RIGHT.

THIS IS THE OTHER THING,

WHEN YOU MOVE INTO THE NEW

NORMAL --

>> Rooney: THESE ARE ALL

OF THE STAGES.

>> RIGHT.

AND THEN, BOOMERANG,

ANOTHER CRISIS.

ONE DOCTOR SAID TO US I'M

NOT EVEN GOING TO TREAT

THIS BECAUSE IT IS A

NON-HODGKINS.

I'M GOING TO TELL YOU GO

OUT AND DO SOMETHING YOU

WOULDN'T HAVE DONE WITHOUT

THIS CRISIS AND DO IT

TOGETHER.

>> THAT'S WHAT WE DID.

IT TOOK US A YEAR TO

FIGURE OUT HOW TO DO IT,

WHAT CLAY WANTED TO DO.

WE CREATED A CIRCLE OF

CARE.

HIS COLLEAGUES CREATED IT

BY THEMSELVES TO SEE HOW

TO GET HIM BACK IN ACTION.

THEY FOUND A UNIVERSITY

THAT WAS EAGER TO HAVE

CLAY COME AND START A

MAGAZINE PROGRAM.

AND HE DISCOVERED, AFTER

WE TOOK MANY, MANY WALKS

TOGETHER, WHAT HE LOVED

DOING MOST, REGARDLESS OF

STATUS OR TITLE.

AND IT WAS IDENTIFYING AND

SHAPING YOUNG TALENT.

SO ALL WE HAD TO DO WAS

PICK UP OUR LIVES IN NEW

YORK, WHICH WE HAD BEEN

MAKING FOR DECADES, AND

MOVE TO CALIFORNIA.

BUT IT WAS SUCH A

BENEFICIAL WAY TO TREAT

THAT ILLNESS.

BECAUSE CLAY'S IMMUNE

SYSTEM WAS ON FIRE AGAIN.

AND WE WERE YOUNG AGAIN

AND IN LOVE AGAIN, AND

HAVING A WONDERFUL TIME

MAKING NEW FRIENDS AND

DISCOVERING ANOTHER PART

OF THE COUNTRY.

I COMMUTED, SO THAT I

COULD CONTINUE MY JOB AND

MY ASSOCIATIONS IN NEW

YORK, BECAUSE I KNEW AT

SOMETIME HE WOULD RETIRE

AND WE WOULD HAVE TO COME

BACK THERE.

AND THAT'S THE OTHER

THINGS, I EMPHASIZE THE

STAGE OF COMING BACK.

WHEN YOU GET TO THE CENTER

OF WHAT I CALL THE

LABYRINTH OF CARE GIVING,

AND YOU HAVE TO LOOK AT

THE SITUATION AND SAY, IS

MY LOVED ONE GOING TO COME

BACK TO THE INDEPENDENT

PERSON OR BECOME

COMPLETELY CURED?

USUALLY NOT, IF IT'S AN

OLDER PERSON.

IF THEY'RE GOING TO BECOME

MORE AND MORE INDEPENDENT

AND NEEDY, THAT'S WHEN YOU

HAVE TO PREPARE ANOTHER

PATH FOR YOURSELF TO COME

BACK.

BECAUSE IF YOU GO DOWN

WITH THE PERSON WHO IS NOT

COMING BACK, IT IS GOING

TO BE VERY DIFFICULT.

>> Rooney: YOU ALSO,

THOUGH, DEAL VERY HONESTLY

WITH THE IDEA THAT PEOPLE

HAVE THESE GUILTY

THOUGHTS, LIKE WHEN IS

THIS GOING TO END.

>> THAT'S RIGHT.

>> Rooney: AND WHAT

ABOUT ME?

I'VE GOT TO GET ON WITH MY

LIFE.

>> YOU CAN'T FEEL GUILTY

ABOUT HAVING THOSE

THOUGHTS.

EVERYBODY HAS THEM.

I ONCE SAID TO MY HUSBAND,

WHEN I WAS TRYING TO LIFT

HIM FROM THE WHEELCHAIR

INTO THE BED WITH ANOTHER

TINY LITTLE AIDE, AND WE

WERE STRUGGLING AND

STRUGGLING, AND SUDDENLY I

SAID, HOW LONG DO YOU WANT

TO GO ON LIKE THIS?

AND THEN I FELT TERRIBLE

FOR SAYING THAT.

AND HE LOOKED AT ME AND

HIS EYES POPPED BECAUSE

THAT'S EXACTLY WHAT HE WAS

THINKING.

I HAD TO FORGIVE MYSELF

FOR THAT AND BE MUCH NICER

TO HIM FOR A LONG TIME

AFTER THAT.

WE ALL HAVE THOSE

THOUGHTS.

AND THE FACT IS NOBODY CAN

TELL YOU HOW LONG WHEN

YOU'RE DEALING WITH

CHRONIC ILLNESS.

AND THAT'S WHY I TALK

ABOUT GETTING TO THE

IN-BETWEEN STAGE.

WHERE IF YOU HAVE SOMEBODY

WHO IS CHRONICALLY ILL,

CAN'T BE CURED,ÒLBUT

THEY'RE FAR AWAY FROM

HOSPICE, AND THEY'RE

PROBABLY VERY RESISTANT TO

THE IDEA OF HOSPICE, AS

THEY SHOULD BE.

I MEAN, IF YOU'RE STILL

LIG AND ABLE TO GET

AROUND, AND HOSPICE IS A

SIX-MONTH DEADLINE THAT

THE DOCTOR HAS TO VERIFY.

SO THERE IS ANOTHER

SOLUTION.

PALLIATIVE CARE.

AND I KNOW YOU HAVE IT

HERE IN BOSTON.

>> Rooney: AND YOU SPENT

SOMETIME HERE.

I REALLY ENJOYED THIS

BOOK.

"PASSAGES IN CARE-GIVING"

BY GAIL SHEEHY.

WHEN WE CONTINUE, SHOULD

ILLEGAL IMMIGRANTS GET

STATE BENEFITS?