>> NANCY AND JOHN WERE JUST STARTING TO SETTLE INTO THE EMPTY NEST IN BEVERLY WHEN THEIR WORLD TURNED COMPLETELY UPSIDE DOWN.
>> WE GET THIS DIAGNOSIS, THEY TELL US NO TREATMENT, NO CURE, 100% FATAL, TWO TO FIVE YEARS.
>> THEIR MIDDLE CHILD, PETE, 27 YEARS OLD AT THE TIME, HAD EMMY ATROPHIC LATERAL SCLEROSIS, MORE COMMONLY KNOWN AS ALS.
>> TWO DAYS AFTER HE WAS DIAGNOSED, MY SISTER AND BROTHER-IN-LAW WERE AT OUR HOUSE, SIGN THESE PAPERS.
WHAT DO YOU MEAN?
THEY SAID WE ARE OPENING UP A TRUST FOR PETE.
LITTLE DID THEY KNOW THAT MY BROTHER-IN-LAW THAT MY DECK HAD LOST COWORKER TO MS -- TO A BEFORE PEOPLE IS DIAGNOSED.
>> THEY SET UP A CRUCIAL FINANCIAL FOUNDATION THAT WOULD SUPPORT THE FAMILY IN THE YEARS TO COME.
>> I THINK THAT IS ONE OF THE MOST IMPORTANT TYPES OF ADVICE WE CAN GIVE TO FAMILIES.
IF YOU HAVE AN INDIVIDUAL WHOSE ABILITY TO PRODUCE THEIR OWN INCOME AND TAKE CARE OF THEMSELVES, AND THEY ARE GOING TO REQUIRE PUBLIC BENEFITS, TO ALWAYS HAVE MONEY GOING INTO A
TRUST.
ATTORNEY NEIL WINSTON HAS BEEN PRACTICING PUBLIC BENEFITS LAW FOR 30 YEARS AND HAS A PRACTICE IN SOMERVILLE.
>> THERE ARE NOT JUST A LOT THAT THEY ARE JUST NOT A LOT OF RESOURCES TO GET THROUGH THEIR LIFE, SO IT IS A COMBINATION OF PUBLIC TRUST AND BENEFITS THAT HELPS AN INDIVIDUAL GET FROM
HERE TO THERE.
>> WE WERE LUCKY BECAUSE WE HAD PEOPLE IN OUR LIVES THAT NEW WHAT WAS GOING TO HAPPEN, SO WE LITERALLY STARTED FUNDRAISING FOR PETE’S EPIC CAREGIVING TWO WEEKS AFTER THAT PETE’S
CAREGIVING TWO WEEKS AFTER HE WAS DIAGNOSED.
>> PETE STILL HAD PRIVATE INSURANCE, AND JOHN AND PETE’S BROTHER, ANDREW, WERE ABLE TO TAKE CARE OF HIM IN THEIR CONVERTED GARAGE.
>> WE HIRED A PERSONAL GEAR GIVER, BUT IT WAS MINIMAL COST BECAUSE -- A CAREGIVER BIG IT WAS MINIMAL COST BECAUSE IT WAS THE STRENGTH TO TRANSITION HIM IN AND OUT OF BED, WHENEVER WE
HAD TO GO FOR AN EVENT.
>> SHORTLY THEREAFTER, PETE’S CONDITION DETERIORATED, AND HE NEEDED A MORE INTENSE LEVEL OF CARE.
>> IF YOU CHOOSE NOT TO GO ON THE VENTILATOR, YOU ONLY HAVE FOUR TO SIX MONTHS LEFT.
AND PETE WAS 30 YEARS OLD.
HE AND JULIE HAD GOTTEN MARRIED, AND JULIE WAS PREGNANT.
SO HE OF COURSE -- I WANT TO LIVE, I’M NOT GOING ANYWHERE.
>> PETE’S WILL TO LIVE WAS RESILIENT, AS WAS HIS FAMILY S
' ’S SUPPORT, BUT AS NANCY SAYS, NOT ALL ALS PATIENTS MAKE THAT SAME CHOICE.
>> THEY WERE TELLING HOW IT WAS A GAME CHANGER FOR HIM, BUT NOW WE ARE BEING PULLED OVER HERE TO PEOPLE WHO WANT TO TELL US, YOU UNDERSTAND ONCE THIS HAPPENS, YOU ARE GOING TO PROBABLY BE IN
THE $250,000 TO $300,000 A YEAR HOME HEALTH CARE BILL, BECAUSE INSURANCE IS NOT GOING TO PA FOR HOME HEALTH CARE.
IN MY EIGHT YEARS OF BEING IMMERSED IN THE COMMUNITY, I CAN TELL YOU THAT MORE ALS PATIENTS THAN NOT CHOOSE NOT TO GO ON A VENTILATOR.
PEOPLE ARE CHOOSING TO DIE RATHER THAN PUT THEIR FAMILY IN THAT KIND OF FINANCIAL SITUATION.
>> FOR MANY FAMILIES, THAT COST IS SADLY TOO MUCH TO BEAR.
EVEN THE MONEY THEY HAD BEEN RAISING AND SAVING FOR YEARS WAS NOT ENOUGH.
>> IS TO MAKE JOKES, JOHN AND I ARE GOING TO BE 95 YEARS OLD, PUSHING CARTS IN THE PARKING LOT TO PAY OFF THIS DEBT.
BUT WE ALSO HAD A PARTNER IN THAT.
WE HAVE A NURSING COMPANY, ADVANTAGE NURSING OUT OF NEEDHAM, WHO SHOWED UP EVERY DAY, EVEN THOUGH WE COULD NOT MEET THE BILLS.
NEVER WAVERED ON US.
AND WE WOULD HAVE AN EVENT AND WE WOULD THROW THEM SOME MONEY, AND THEY WERE LIKE, OK, KEEP IT GOING.
>> THE CARETAKING TEAM THEY HAD BUILT ALSO HAD TO TRAVEL WITH PETE TO THE FUNDRAISERS, EVENTS, AND OUTINGS.
>> ON FACEBOOK IT LOOKS WONDERFUL.
WE SHOW UP, WE ARE LIVING WITH ALS.
IT IS NOTHING LIKE IT WOULD TAKE TWO DAYS OF ADVANCE PLANNING.
WE NEED AN EXTRA SET OF ANDS, BUT OF COURSE THAT EXT NURSE COULD NOT JUST COME FOR A COUPLE OF HOURS, THEY WOULD HAVE TO COME FOR THE SHIFT.
SO NOW WE HAVE A DOUBLE BILL.
THOS TRIPS, THE BASEBALL GAME, THE EXPERIENCE ARE SO WONDERFUL AND WERE SUCH A HIGHLIGHT.
>> AND PETE WAS NOT THE ONLY MEMBER OF THE FAMILY JOHN AND NANCY WERE HELPING TO TAKE CARE OF.
>> UNFORTUNATELY, WE LOST JOHN’S DAD EIGHT WEEKS AFTER PETE PASSED AWAY, AND MY DAD HAS BEEN DEALING WITH DEMENTIA ISSUES.
SO BEING THE SANDWICH GENERATION, I WAS TAKING CARE OF MY SON, WORRYING ABOUT WHAT WAS GOING ON IN THIS HOUSE, AND I SAID YOU ARE IN YOUR LATE 80’S, OK?
I NEED YOU TO BE SAFE.
I CANNOT BE WORRYING ABOUT YOU.
>> DESPITE ALL THAT WORRY, THE FINANCIAL IMPACT AND THE HEARTBREAKING LOSS, THERE IS ONLY ONE THING THEY WISH THEY COULD HAVE CHANGED.
>> I WOULD NOT TRADE ONE THING THAT HAPPENED, OTHER THAN PETE HAVING ALS, WHICH EVERY DAY WE WISHED AND HOPED, AND EVENTUALLY THE REALIZATION HAPPENED THAT PETE WAS NOT GOING T BEAT THIS
DISEASE.
BUT THE BEAUTY THAT WE SAW IN PEOPLE, ESPECIALLY THESE NURSE IS EVERYTHING FOR US.
>> THE FRATES FAMILY HAS ESTABLISHED A NEW FOUNDATION TO HELP ALLEVIATE THE COST OF CARE FOR FAMILIES CARING AT HOME FOR A LOVED ONE WITH ALS.