Transcript: Your Health Season 3 Episode 23 | Mar 12, 2002

A slate reads "The advice given in the following program is of a general nature only. Viewers should consult their own medical professional for medical advice specific to their circumstances."

(music plays)

Against a gray background, an animated blue, green and gray grid shows clips of doctors and patients as the white letters of the title of the show fly forward: "Your Health."

Maureen says THIS WEEK.

Barbara McCormack is in her early fifties, with short blond hair and bangs. She wears a dark leopard scarf and orange sweater.

Barbara says NOBODY PLANNED FOR THESE
CHILDREN TO LIVE THIS LOCK.

Karen Parent is in her late forties with bangs and short blond hair. She wears a white turtleneck sweater and brown checked jacket.

Karen says CLEARLY, THE
EXPECTATIONS ON THE PART OF
SOCIETY AND ON THE PART OF
THE HEALTH-CARE SYSTEM FOR
FAMILIES ARE WELL BEYOND
THEIR CAPACITY TO COPE AND
IT'S REALLY QUITE
UNACCEPTABLE.

Maureen says THE STRESS OF CARING FOR
SEVERELY DISABLED CHILDREN.

Paul Caldwell is in his late fifties, with a beard and receding white hair. He wears a gray shirt and patterned orange tie.

Paul says IT'S A PHOTOGRAPH OF WHAT
THE ELECTRICITY OF THE HEART
LOOKS LIKE AT THAT
PARTICULAR TIME.

Maureen says AND ON METHODS 101 THE
ECG.

The animated grid appears showing clips of a woman holding a baby, pills, a surgery, a needle and a man doing exercise.

The title of the program reads "Your Health." The "R" in "Your" ends with an "X."

Maureen Taylor stands next to a screen in a studio. She is in her late thirties with shoulder-length light brown hair. She wears a bright blue blazer and light patterned silk scarf.

Maureen says HELLO, I'M
MAUREEN TAYLOR.
IF THE STORY OF ITY LATIMER
HAS DONE ANYTHING, IT'S
BROUGHT THE ISSUE OF
CAREGIVER STRESS OUT OF THE
CLOSET.
EVERY DAY IN CANADA
THOUSANDS OF FAMILIES CARE
FOR SEVERELY DISABLED
CHILDREN WHO NEED
ROUND-THE-CLOCK ATTENTION.
AND STUDIES SHOW THERE IS A
HUGE COST BOTH FINANCIALLY
AND EMOTIONALLY TO CARING
FOR THESE CHILDREN.

The TV screen next to her shows a picture of mothers taking care of their disabled children.

Maureen continues BUT AS WE DISCOVERED THESE
PARENTS HAVE LITTLE TIME TO
FEEL SORRY FOR THEMSELVES
AND THEY'RE DEEPLY COMMITTED
TO KEEPING THEIR CHILDREN AT
HOME WHERE THEY LONG.

[monitor beeps]
A blue slate reads "Where they belong. Produced by Maureen Taylor."

A clip plays.

A family home video shows a boy looking at a baby.

The boy says ANDREW...

Chris Peters is in his late thirties, clean-shaven with black hair. He wears a dark blue shirt.

Chris says I WAS VERY BUSY HOUSEHOLD,
WE HAD THREE KIDS IN DIAPERS
AT ONE POINT SO IT WAS A LOT
OF CHANGING AND SO ON.
BUT IT WAS A LOT OF FUN TOO
AND IT WAS GREAT TO HAVE THE
KIDS SO CLOSE IN AGE.
SO THEY COULD INTERACT WITH
EACH OTHER.

Jodi is in her mid-thirties with short brown hair. She wears a blue shirt.

Jodi says I REMEMBER MY MUM SAYING
WHEN THEY WERE BORN THEY'RE
GOING TO RUN CIRCLES AROUND
YOU.

Jodi laughs.

Chris records two babies crawling on the floor and says HEY BABIES, HEY?
MERRY CHRISTMAS.

Maureen says CHRISTMAS 1999 IN THE
PETERS HOUSEHOLD, TWINS HAVE
JUST CELEBRATED THEIR FIRST
BIRTHDAY.

Jodi says SHE WAS PERFECTLY HEALTHY,
PERFECTLY NORMAL IF THERE IS
SUCH A THING AS NORMAL.
JUST AFTER THEIR FIRST
BIRTHDAY IN DECEMBER RIANNE
GOT A FEVER AND SHE HAD NO
OTHER SIGNS OF BEINGIM, SHE
JUST GOT THIS FEVER AND WE
JUST WERE GIVING HER THE
TYLENOLS, BATHING HER, KEEP
THE FEVER DOWN, SO ON IT
JUST DIDN'T GO AWAY.

The caption changes to "Jodi Peters."

Jodi continues IT JUST KEPT COMING BACK AND
SO WE DECIDED THAT SHE
SHOULD PROBABLY BE SEEN AT
THE HOSPITAL.
SO CHRIS PACKED HER UP.
IT WAS NEW YEAR'S EVE, 1999.
TOOK HER TO THE HOSPITAL AND
WHILE WE WERE THERE SHE
SUFFERED A SEIZURE FROM THE
HIGH FEVER.

A blurry black and white clip shows an emergency entrance and a hospital room.

Jodi continues SO THEY INTUBE ATED HER AND
BECAUSE SHE HAD EATEN DURING
THE DAY, WHEN THEY INYOU
BAITED HER SHE VOMITED, BUT
BECAUSE THE TUBE WAS IN HER
MOUTH ALL THE FOOD WENT INTO
HER LUNGS SO THEY CALL IT AN
ASPIRATION KNEW MONDAYIA.
AND I GOT A CALL SAYING
THERE WAS TROUBLE AT THE
HOSPITAL AND COULD WE COME
BECAUSE RIANNE HAD HAD A
CARDIAC ARREST.
IN THE PROCESS OF CHANGING
ONE OF HER TUBES, HER LUNGS
WERE SO STIFF THAT THE AIR
JUST BLEW HOLES IN HER
LUNGS.
AND HER LUNGS COLLAPSED.
ALL THE AIR COMPRESSED ON
HER HEART AND HER HEART
STOPPED BEATING.
AND THE REST I GUESS IS
HISTORY.

Jodi walks into her living room. Rianne lies on a bed with a tube attached to her throat.

A female doctor says GOOD MORNING, HOW ARE
YOU.

Jodi says I'M OKAY.
HI, RIANNE.

Maureen says TWO AND A HALF YEARS
LATER THE PETERS LIVING ROOM
RESEMBLES A HOSPITAL
NURSERY.
RIANNE HAS SEVERE BRAIN
DAMAGE AND CHRONIC LUNG
DISEASE.
HER LUNGS HAVE TO BE CLEARED
THROUGH A TRACHIOUS ME TUBE
IN HER TLOET AND SHE IS FED
THROUGH AN IV RUNNING INTO
HER STOMACH.

Jodi says I WAS A LITTLE BIT SCARED
TO HAVE HER COME HOCHLT I
KNEW THAT I WOULD BE THE
PRIMARY CAREGIVER WHILE
CHRIS WAS AT WORK.
I STILL HAD ANDREW AT HOME
AND AT THAT POINT WHEN WE
FIRST THOUGHT RIANNE WAS
GOING TO COME HOME JOSHIA...
JOSHUA WAS AT HOME.
I THOUGHT HOW WILL I DO THIS,
SHE DOESN'T SLEEP AT NIGHT
SO WE NEED THE NURSING HOURS
WE HAVE TO COVER NIGHT
SHIFTS BUT I HAVE MEALS TO
MAKE AND LAUNDRY TO DO AND
RIANNE TO CARE FOR PLUS
TRYING TO SPEND EQUAL TIME
WITH THE BOYS.
AND IT WAS A VERY, VERY
SCARY THOUGHT.

Fast clips show Jodi kissing Rianne, checking her saline solution bag and watching her sons eat.

Jodi continues THE SCARIEST THING FOR ME IS
HER TRACH.
IT HER LIFELINE IN A LOT OF
WAYS.
AND CHRIS AND I CAN BOTH
TAKE TOUT, PUT IT BACK IN.
BUT IF IT COMES OUT WHEN YOU
LEAST EXPECT IT TO COME OUT
OR IF IT GETS PLUGGED, IT IS
VERY SCARY THING.
VERY SCARY THOUGHT TO THINK
THAT, YOU KNOW, I COULD BE
THE DIFFERENCE BETWEEN
LIFE-AND-DEATH FOR HER.

The caption changes to "Barbara McCormack."

Barbara says THERE IS NO DOUBT THAT
THE STRESS ON THE FAMILY TO
DEAL WITH THESE KINDS OF
SITUATIONS IS ACUTE.
I WOULD CHALLENGE ANYBODY TO
SPEND AN EVENING WHEN THEIR
CHILD IS VERY SICK AT HOME
THINKING THAT IN THE NEXT 15,
20 MINUTES YOUR CHILD MIGHT
BE DEAD.
AND YOU DID LIVE WITH THIS
ONCE, YOU LIVE WITH THIS
PERPETUALLY.
YOU COULD LIVE WITH THIS
WEEK IN, WEEK OUT, DAY N DAY
OUT, KNOWING THAT IF
SOMEBODY ISN'T THERE, IF
SOMEBODY IS NOT LOOKING, IF
SOMEBODY DOESN'T TAKE
APPROPRIATE ACTION, YOUR
CHILD IS NOT GOING TO BE
ALIVE.

Barbara sits in a sofa holding Sara. She has brown hair and wears a pink pullover.

Barbara says HOW ARE YOUR HIP DOGS,
HOW ABOUT THE PAIN.

A blond woman says DOING GOOD.

Barbara says JUST HAD SOME VALIUM LAST
NIGHT.

Maureen says 12-YEAR-OLD SARA
McCORMACK WAS BORN WITH A
RARE GENETIC DISORDER THAT
AFFECTS ONLY GIRLS.

Barbara says SHE IS QUADRIPLEGIC, NO
FUNCTIONAL USE OF ANY LIMB.
SHE CAN HOLD NOTHING IN HER
HANDS.
SHE CAN'T SPEAK.
SHE CAN'T HOLD HER HEAD UP.
SHE CAN'T ROLL, SHE CAN'T
MOVE.
SHE'S BLIND.
SHE HAS A SMILE THAT MELTS
HEARTS AT 100 PACES, SHE HAS
A PERSONALITY, SECOND TO
NONE.
AND SHE WILL GET HER
MESSAGES CAN ONE WAY OR
ANOTHER.
SHE IS ABSOLUTELY A DELIGHT.
SHE JUST HAPPENS TO HAVE A
LOT OF NEEDS.
AND AT THE MOMENT WE'RE
DEALING WITH VERY FRAGILE
HEALTH.

A wind chime and toys hang on a wooden structure that sits on Sara’s bed. Barbara makes her play with those elements.

Maureen says LIKE RIANN SARA QUALIFIES
FOR THE MAXIMUM AMOUNT OF
HOME CARE AVAILABLE IN
ONTARIO.
BUT THAT DOESN'T EVEN GIVE
HER MOTHER BARBARA, A FULL
NIGHT'S SLEEP THROUGH THE
WEEK.

Barbara says SARA HAS TO BE TURNED
EVERY HOUR DURING THE NIGHT.
SHE HAS TO BE ATTENDED TO.
SHE COULD VOMIT, SHE COULD
CHOKE, SHE CAN STOP
BREATHING, VARIOUS OTHER
THINGS.
AND SO I USE THAT TO HELP ME
GET A NIGHT'S SLEEP.
HOWEVER, IT DOESN'T... IT'S
NOT QUITE AS GOOD AS IT
SOUNDS BECAUSE I HAVE TO GET
UP AN HOUR OR AN HOUR AND A
HALF BEFORE THE SHIFT ENDS
TO HELP GET SARA READY FOR
SCHOOL.
SO IN FACT THE AMOUNT OF
NIGHT THAT I GET IS AROUND
SIX HOURS.

Jodi says ONE OF US STAYS UP UNTIL
MIDNIGHT UNTIL THE NURSE
COMES, DURING THE WEEK WE
ARE BOTH UP AT QUARTER AFTER
6:00, 6:30 IN THE MORNING SO
ONE OF US IS GETTING A
SIX-HOUR SLEEP AND WE
ROTATE.
BUT STILL, THERE ARE SOME
NIGHTS WHEN IT IS ALL YOU
CAN DO TO KEEP YOURSELF
AWAKE UNTIL MIDNIGHT FOR THE
NURSE TO COME.
NURSING IS STILL AN
ISSUE.
WE HAVEN'T GOT THAT IN PLACE,
SOME NIGHTS WE STILL HAVE TO
DO ON OUR OWN AND I STILL
HAVE TO CARE FOR RIANN ALL
DAYS.
LOTS OF DAYS THINGS DON'T
GET DONE.
AND THAT IS JUST KIND OF
LIFE FOR US.
UNFORTUNATELY.

Jodi prepares a saline solution in her kitchen.

Barbara says WILL YOU FIND THAT MOST
PARENTS WITH PROFOUNDLY
DISABLED CHILDREN, THERE IS
A STAY AT HOME PARENT, IF
THE MARRIAGE IS STILL INTACT,
THAN USUALLY THE MOTHER
STAYS HOME.
AND IF THE MARRIAGE IS NOT
INTACT WHICH SADLY OCCURS IN
EIGHT OUT OF TEN CASES,
NORMALLY WILL YOU FIND THE
MOTHER IS ON WELFARE.
I'M A SINGLE PARENT AND I
NEED TO GO OUT TO WORK.
I NEED TO BE ABLE TO SUPPORT
SARA.
I NEED TO HAVE A LIFE.
I DON'T WANT TO BE ON
WELFARE AND I CHOOSE IT TRY
TO BALANCE MY LIFE WITH
SARA'S NEEDS AND HOLDING
DOWN QUITE A RESPONSIBLE
JOB.
IT'S A REAL BALANCING ACT.

Barbara operates a seat hanging from the ceiling that carries Sara around the house.

Jodi says IDEALLY, IT WOULD BE
GREAT TO HAVE MAYBE THREE OR
FOUR, FOUR-HOUR SHIFTS
DURING THE DAY SO I CAN RUN
DOWN TO THE LAUNDRY AND NOT
WORRY ABOUT IF RIANN IS
COUGHING OR IF SHE IS
VOMITING AND I'M MISSING IT.
TO VACUUM, TO GO OUTSIDE
WITH ANDREW, TO GO TO THE
STORE AND NOT MAKE IT A HUGE
DEAL BECAUSE IT IS DIFFICULT
TO TAKE RIANN PLACES BECAUSE
SHE REQUIRES SO MUCH
EQUIPMENT.
I TAKE HER, BECAUSE I THINK
IT IS IMPORTANT FOR HER TO
BE OUT THAT SHE IS PART OF
THE COMMUNITY.
SHE NEEDS TO BE OUT AND
STIMULATED BY OTHER THINGS.
BUT IT CERTAINLY IS NOT EASY.

Barbara says NOBODY PLANNED FOR THESE
CHILDREN TO LIVE THIS LONG.
TYPICALLY CHILDREN WITH
SARA'S NEEDS, PROFOUND NEEDS
WOULD NOT HAVE SURVIVED VERY
LONG IF THEY HAD BEEN BORN
IT, 30 YEARS AGO.
SO MEDICAL SCIENCE HAS DONE
WONDERS IN KEEPING OUR
CHILDREN ALIVE, KEEPING THEM
HEALTHY, BUT THE SYSTEM IS
STILL EXPECTING THEM TO DIE.
WHEN THEY ARE VERY YOUNG AND
THEREFORE, NOT CONTINUE
NEEDING SERVICE FOR THE LONG
HAUL.

Jodi’s son lies next to her sister.

Jodi says OKAY CAN I PICK HER UP
THEN.

The boy says NO.

Jodi says NOT YOU WANT TO STAY HERE
A FEW MORE MINUTES.

The boy says YEAH.

Jodi says THE WHOLE IDEA OF HAVING
A CCAC PROGRAMME WAS TO GET
THE KIDS OUT OF THE
INSTITUTIONS AND INTO YOUR
HOME.
BUT INTO THE COMMUNITY, BUT
THEY ARE NOT PROVIDING THE
SERVICES FOR US TO BE ABLE
TO DO THAT.
AND YOU KNOW, CHRIS AND I
HAVE HAD A DIFFICULT TIME,
THERE ARE MOMENTS, YOU KNOW,
WHEN I THINK OKAY DID I
SPEAK TO HIM TODAY.
YOU KNOW T IS JUST BECAUSE
YOU GET SO BUSY DOING
THINGS.
AND IF YOU WANT FAMILIES TO
BE FAMILIES AND STAY
TOGETHER THAN YOU NEED TO
PROVIDE THE SUPPORT AND THE
SERVICES FOR US TO BE ABLE
TO DO THAT.

Jodi injects a substance to a tube that stretches out of her daughter’s clothes.

Jodi says THIS IS THE OTHER ONE FOR
YOUR SEIZURES.

Then, Jodi says I TRY NOT TO THINK THAT
FAR AHEAD.
I JUST TRY TO GO DAY-TO-DAY,
KIDS WITH CHRONIC LUNG
DISEASE, BRAIN INJURY,
CHRONIC PNEUMONIAS, DON'T
HAVE A VERY LONG LIFE SPAN.
IT SO I JUST TRY TO TAKE IT
DAY-TO-DAY AND ENJOY THE
TIME THAT WE HAVE WITH HER
NOW.

Barbara says AND I HAVE TO SAY THAT
THERE IS NO DUFERJS IN THE
LOVE THAT WE HAVE FOR OUR
CHILDREN... DIFFERENCE THAN
THE LOVE WE HAVE FOR OUR
CHILDREN, BECAUSE OUR
CHILDREN HAVE DISABILITIES
MAKES THEM NO DIFFERENT IN
ANY WAY WHATSOEVER.
I ADORE MY DAUGHTER.
I LOVE HER TO BITS.
I WOULD HATE FOR ANYTHING TO
HAPPEN TO HER.

Chris says I'M SCARED ABOUT OUR
FUTURE.
WE ARE GOING TO NEED TO HAVE
MODIFICATIONS TO OUR HOUSE
AND THERE IS GOING TO BE A
LOT OF THINGS THAT AM US...
THAT MAKE ME VERY NERVOUS.

Barbara says WE NEED THIS.
THIS IS NOT A LIFE THAT WE
ARE LIVING, THIS IS AN
EXISTENCE.
IT IS AN EXISTENCE, IT IS
PATCHED TOGETHER.
AND YOU NEVER KNOW FROM ONE
DAY TO THE NEXT JUST HOW
GOOD OR HOW BAD IT'S GOING
TO BE.

Chris says YOU KNOW, YOU DO WHAT YOU
HAVE TO DO.
AND PEOPLE ALWAYS SAY HOW DO
YOU DO T YOU DO WHAT YOU
HAVE TO DO.
BUT IT'S AWFULLY TOUGH
WITHOUT HELP.

Holding Rianne, Jodi says YOU KNOW WHAT, RIANN IS
FALL ASLEEP.

The clip ends.

Now, Maureen and two guests sit at a table.

Maureen says I'M SURE
WATCHING OUR STORY ON THE
PETERS AND McCORMACK
FAMILIES YOU WERE BOTH MOVE
BID THEIR DEVOTION TO THEIR
CHILDREN, AND APPALLED THAT
THERE ISN'T MORE ASSISTANCE
AVAILABLE TO THEM.
WE'RE GOING TO EXPLORE THE
EXTENT OF CAREGIVER STRESS,
THE IMPACT ON OUR SOCIETY,
AND WHAT CAN BE DONE TO
ALLEVIATE IT.
BARBARA McCORMACK IS WITH US
IN STUDIO, WILL YOU
RECOGNIZE HER AS SARA AMER.
AND WE ALSO HAVE PROFESSOR
KAREN PARENT FROM QUEEN'S
UNIVERSITY.
KAREN CO-AUTHORED A STUDY ON
HOME RELIEF RELEASED LAST
YEAR.
WHAT WERE YOUR THOUGHTS AS
YOU WATCHED OUR STORY ABOUT
BARBARA'S DAUGHTER AN RIANN.

The caption changes to "Karen Parent. Department of Rehabilitation Medicine. Queen’s University."

Karen says MY THOUGHTS IMMEDIATELY
ARE THAT THIS IS A FAMILIAR
STORY AND THAT CLEARLY THE
EXPECTATIONS ON THE PART OF
SOCIETY AND ON THE PART OF
THE HEALTH-CARE SYSTEM FOR
FAMILIES ARE WELL ONTHEIR
CAPACITY TO COPE WITH.
IT IS REALLY QUITE
UNACCEPTABLE.

Maureen says THESE FAMILIES LIVE IN
ONTARIO.
WOULD THEIR SITUATION BE ANY
BETTER IF THEY LIVED IN
ANOTHER PRO RINSE OR
TERRITORY?

Karen says OH, NO, NOT NECESSARILY.
THE RESEARCH THAT WE DID HAS
FOUND THAT THAT IS A
PREVALENT THEME.
THAT FAMILIES ARE REALLY
FEELING OVERBURDENED IN A
LOT OF CASES AND IT IS
HAVING AN ADVERSE AFFECT ON
THEIR FAMILIES, AN ADVERSE
AFFECT ON THEIR
CHAMPIONSHIPS ARE THEIR...
RELATIONSHIPS WITH THEIR
CHILDREN, SPOUSES.
IT IS HAVING AN ADVERSE FAE
THE MENTALLY,
PSYCHOLOGICALLY, FINANCIALLY,
IT DOESN'T MATTER WHAT
PROVINCE ARE YOU IN, IT IS
THE SAME.

Maureen says BARBARA, YOU HAVE FELT
ALL OF THOSE TYPES OF
STRESSES.
TALK TO ME A LITTLE BIT
ABOUT THE LONELINESS THAT
PARENTS LIKE YOURSELF, OR
CAREGIVERS LIKE YOURSELF
FEEL.

Barbara says I THINK A LOT OF IT COMES
BECAUSE YOU CANNOT LEAVE
YOUR CHILDREN WITHOUT
SOMEBODY BEING PAID,
NORMALLY A NURTION OR
EQUIVALENT TO ACTUALLY LOOK
AFTER THEM.
AND THE MONEY TO DO THAT IS
SO ENORMOUS BA THAT YOU END
UP STAYING HOME MISOF THE
TIME.
WE SUFFER FROM THE FACT THAT
EVERY HOUR WE DON'T SPEND
WITH OUR CHILDREN IS
NORMALLY A PAID HOUR.
AND IF YOU ARE NOT GETTING
SUFFICIENT FUNDING TO DO
THAT, THERE IS A LIMIT TO
HOW MUCH YOU CAN GO OUT AND
INTERACT WITH OTHER PEOPLE.
FOR EXAMPLE,, I CAN'T TAKE
AN EVENING CLASS WITHOUT IT
COSTING ME OVER 100 DOLLARS A NIGHT
TO TAKE AN EVENING CLASS TO
GO TO A MOVIE IS WELL OVER
100 DOLLARS IN NURSING FEES.

Maureen says BECAUSE YOU
DON'T NEED A ABOUT SITTER,
YOU NEED A NURSE.

Barbara says A 34 DOLLAR HOUR NURSE, AND IF
I GET A NURSE THROUGH THE
AGENCY THAT ALREADY PROVIDES
NURSES AT 34, SO TO GO OUT
FOR THREE HOURS IS OVER 100
DOLLARS THAT IS ISOLATING BECAUSE
YOU JUST DON'T GO OUT T IS
SIMPLE, YOU DON'T GO
ANYWHERE.
AND THE FUNDING THAT IS SET
UP WHICH IS SUPPOSEDLY
CALLED RESPITE FUNDING THAT
WOULD ALLOW US TO GO OUT,
WE'RE ACTUALLY USING FOR THE
ABSOLUTE BASIC FUNDAMENTALS
OF DALEY CARE, USING IT TO
CHANGE DIRPS.
WE ARE USING IT FOR FEEINGD,
TO CHANGE TRACH TUBES, TO
SET UP G-TUBE FEEDS.
WE ARE USING IT FOR THE
BASICS OF CARE.

Maureen says AND THE
CAREGIVERS HEALTH IS AT RISK
AS WELL.
HAVEN'T WE FOUND THAT IN
STUDIES, KAREN.

Karen says WE HAVE, THERE HAVE BEEN
NUMBEROUS STUDIES IN CANADA
AND THE U.S. AND GLOBALLY
WHICH SUGGEST THAT
CAREGIVERS DO SUFFER WHEN
THEY ARE ASKED TO DO MORE.
THERE IS A NEW CAREGIVER,
THE TEENAGER COMING UP AND
THEY ARE SUFFERING IN
DIFFERENT WAYS THAT WE ARE
JUST BEGINNING TO UNDERSTAND
AGE THE SENSE OF ISOLATION
THAT YOU HAVE DESCRIBED,
TEENAGERS CAN FEEL
INCREDIBLY ISOLATED BECAUSE
THEY ARE AT HOME, COMBING
HOME AFTER SCHOOL AND CARING
FOR A GRANDMOTHER OR CARING
FOR A MOTHER OR FATHER, AND
THEY DON'T FEEL THAT THEY
CAN PARTICIPATE IN THE
REGULAR PEER ACTIVITIES.
AND IT'S HAVING ADVERSE
AFFECTS ON THEIR DAILY LIVES,
INKREBLD.

Barbara says COMPLETELY DESTROYS
FAMILY LIFE.
THERE IS A CONSTANT
BALANCING ACT BETWEEN THE
TIME THAT YOU MAY BE ABLE TO
GIVE TO YOUR SPOUSE, THE
TIME YOU MAY BE ABLE TO GIVE
TO YOUR OTHER CHILDREN, THE
TIME YOU MAY BE ABLE TO GIVE
TO OTHER FAMILY MEMBERS, TO
YOUR FRIENDS.
AND FRANKLY, OUR CHILDREN
ARE SO TIME-CONSUMING THAT
EVERYTHING ELSE FADES INTO
INCISION, CONSEQUENTLY, OUR
MARRIAGES FAIL, OUR
FRIENDSHIPS FAIL, OUR
CHILDREN BECOME ISOLATED,
AND IT REALLY IS A NO-WIN
SITUATION.
SO THE BURNOUT IS ENORMOUS.
THE HAD HADNESS IS ENORMOUS.
AND I THINK THAT WE WOULD
ALL SAY WE LIVE EXTREMELY
STRESSED LIVES.

Maureen says AND THEN WE HEAR ABOUT
THE STORIES THAT MAKE THE
NEWS HEADLINES, THE
MURDER SUICIDES, THE TRACY
LATIMER CASE AN CAR EBB, I
WONDER HOW MANY DON'T WE
EVEN HEAR ABOUT.

Karen says WELL, THAT'S THE ACTUAL,
MORE OF THE REALITY, THE
ONES THAT MAKE THE HEADLINES
ARE CERTAINLY EXTREME CASES.
BUT MOST PEOPLE ARE LIVING
HOME BY HOME, DAY-BY-DAY IN
ISOLATION.
AND THEY DON'T GET HURT,
THEY CERTAINLY DON'T.
THEY JUST CONTINUE TO MAKE
DUE AS YOUR CLIP SAID.
THEY CONTINUE TO GO ALONG
WITH IT TO THE POINT WHERE
THEY MAY ULTIMATELY THEIR
HEALTH MAYBE COMPROMISED.
BUT NOBODY MAKES THE
CONNECTION BETWEEN THEIR
COMPROMISED HEALTH AND THE
FACT THEY HAVE BEEN SPENDING
UP TO YEARS, FOR SOME 20
YEARS IF YOU HAVE A SPOUSE
WITH MULTIPLE SCLEROSIS OR
ANOTHER NEUROLOGICAL DISEASE,
YOU COULD SPEND YOUR TIME
DOING MINOR THINGS TO HELP
THEM WITH THEIR DIDDEE
LIVING TO THE EXTENT WHERE
YOU WILL SPEND YOUR ENTIRE
TIME HELPING THEM
DYSFUNCTION ON A DAY-TO-DAY
BASIS.
IT TAKES THEM HOSTAGE AND
CHANGES RELATIONSHIPS.
MOTHERS AREN'T MOTHERS ANY
MORE, THEY ARE ATTENDANCES.
WIVES AREN'T WIVES ANY MORE.
THEY FEEL ROBBED, ABSOLUTELY
ROBBED.

Maureen says DO YOU FEEL
SOMETIMES LIKE SARA'S NURSE
RATHER THAN HER MOTHER.

Barbara says VERY MUCH SO, ESPECIALLY
WHEN I'M SITTING WITH A
SUCTION MACHINE SUCTIONING
HER EVERY FIVE OR SIX
MINUTES.
IT RUBS YOU OF A LOT OF HOPE
AND QUALITY OF LIFE
OPPORTUNITY.
I MEAN I HAVE PERHAPS AN
EXCEPTIONAL THAT I HAVE
CHOSE TONE TRY AND CARRY ON
WORKING WHILE I'M A SINGLE
PARENT LOOK AFERING A CHILD
LIKE SARA, THAT IS PARTLY TO
PAY THE MORTGAGE.
She laughs and continues IN FACT WHOLLY TO PAY THE
MORTGAGE BUT AND I'M LUCKY
THAT I HAVE SOME OUTLET.
BUT MOST PEOPLE THAT I KNOW
MOST AM THAT I KNOW ARE AT
HOME ALL DAY LONG WITH THEIR
CHILDREN AND PRETTY MUCH
STUCK INSIDE.

Maureen says WHAT DO FAMILIES
LIKE YOURS NEED SO THAT YOUR
LIFE IS LIVABLE AGAIN.

Barbara says I THINK THAT WE NEED
BETTER ACCESS TO THE FUNDING
THAT IS CURRENTLY AVAILABLE
FOR OUR CHILDREN, TO SPEND
IT IN A WAY THAT IS MORE
APPROPRIATE FOR OUR
PARTICULAR SITUATIONS.

Maureen says EXPLAIN THAT.

Barbara says IT MEANS THAT TAKING THE
BUDGET, THE NURSING BUDGET
THAT IS AVAILABLE THROUGH
THE CCAC AND INSTEAD OF
PUTTING IT THROUGH A
PRESCRIBED AGENCY FOR A
PRESCRIBED LEVEL OF CARE, AN
RPN OR AN RN THAT WE SIT
THERE, LOOK AT THAT AMOUNT
OF MONEY AND SAY HOW CAN WE
BEST SPEND THIS MONEY IN THE
CASE OF BARBARA ANSARA.
OR HOW CAN WE BEST SPEND
THIS MONEY IN ANOTHER CASE
WHERE MAYBE THERE ARE
SIBLINGS OR MAYBE THERE ARE
DIFFERENT FAMILY SITUATIONS.

Maureen says SO IT IS NOT A
ONE SIZE FITS ALL.
KAREN, YOU LOOKED AT
DIFFERENT SYSTEMS, DOES THAT
WORK, WILL THAT WORK.

Karen says IT HAS WORKED IN OTHER
SYSTEMS.
IT IS NOT FOR EVERYBODY BUT
I THINK IT NEEDS TO BE A
CHOICE WITH THE HAD CARE
SYSTEM FOR FAMILIES THAT ARE
WILLING TO TAKE IT ON.
IT ALLOWS THEM THE
OPPORTUNITY TO DEVELOPMENT A
CARE PLAN IN A WAY THAT IS
FLEXIBLE, RESPONSIVE TO
THEIR NEEDS AN BRINGS IN THE
PEOPLE THAT THEY CAN WORK
WITH AND HELP THEM
UNDERSTAND THEIR CHILD'S
NEEDS.
YOU KNOW, THE CONTINUITY IS
SO POOR YOU GET... IT IS A
REVOLUME OFING DOOR, YOU CAN
HAVE UP TO TEN WORKERS IN A
SHORT PERIOD OF TIME WHICH,
WHO IS THAT HELPING.
THAT MEANS THAT YOU'VE GOT
TO RETRAIN EACH TIME.
SPEND THAT ENERGY THAT YOU
DON'T HAVE ANYWAY.

Barbara says AND EVERY TIME HE RETRAIN
I BASICALLY LOSE THE ENTIRE
SHIFT BECAUSE I HAVE TO BE
THERE FOR THE WHOLE SHIFT.
THERE IS NO OPPORTUNITY FOR
ME TO GO AND DO ANYTHING.
SO I AM TRAINING AND
SOMETIMES YOU GET FOUR OR
FIVE DIFFERENT NURSES COMING
IN THE SPACE OF TWO WEEKS SO
YOU SUDDENLY ARE IN
PERPETUAL TRAINING MODE.
AND YOU KNOW, YOU HAVE TO
UNDERSTAND THAT OUR CHILDREN
COMMUNICATE VERY SUBTLEY.
SARA WILL INDICATE YES, BY
RAISING HER EYES.
WELL, IF YOU DON'T KNOW WHAT
ARE YOU LOOKING FOR, THEN
YOU ARE TO THE GOING TO KNOW
THAT SHE IS GIVING YOU A
YES.
SO IT TAKES ALOT OF TRAINING
FOR PEOPLE TO PICK UP THESE
SUBTLE LITTLE HAND GESTURE,
JERKS, MOVEMENTS, EYE GAZES,
TWHAEFER MIGHTING.

Maureen says SO WHEN YOU GET
SOMEONE YOU LIKE YOU WANT TO
HANG ON.

Barbara says AND YOU WANT TO TRAIN
SOMEBODY WHO LOVES YOUR
CHILD.

Maureen says ABSOLUTELY.

Barbara says YOU DON'T WANT SOMEBODY
WHO IS IN THERE FOR EIGHT
HOURS LOOKING AT THE CLOCK
WISHING IT WAS TIME TO GO.
YOU WANT SOMEBODY WHO IS
EQUALLY INVESTED IN THE
WELL-BEING OF YOUR CHILD AS
YOU ARE.

Maureen says JUST FINALLY, KEARN WHAT
IS THE DANGER IF WE DON'T
ADDRESS THE STRESS OF THESE
CAREGIVERS AND THEIR NEEDS.

Karen says I THINK WE HAVE ALREADY
SEEN THAT.
WE HAVE SEEN THE EXTREME
WHERE PEOPLE ARE JUST UNABLE
TO COPE, MENTALLIMNESS, THE
HEALTH OF THE MENTAL HEALTH
OF INDIVIDUALS IS CLEARLY UP
FOR BEING VULNERABLE.
WE SEE WOMEN, THIS IS A
PREDOMINANTLY A GENDER ISSUE,
GENERALLY WOMEN IN THE ROLE
OF CAREGIVERS AND THEY ARE
LOSING THEIR FINANCIAL
SECURITY IN THE FUTURE
BECAUSE THEY HAVE TO GIVE UP
JOBS SO THEY GO PART-TIME.
OR THEY, AND THEY ENUP...

Barbara says IF THE MARRIAGE BREAKS
DOWN, I MEAN THAT HAPPENED
TO ME, ARE YOU EITHER ON
WELFARE OR YOU CAN'T TAKE
THE KIND OF LEVEL THAT YOU
MIGHT PREVIOUS HAD.

Karen says AND REENTER.

Barbara continues I KNOW OF LAWYERS AND
OTHER PROFESSIONAL PEOPLE
WHO CAN'T WORK BECAUSE THEY
SIMPLY CAN'T MAKE ENOUGH
MONEY TO PAY THE ASTONISHING
BILLS THAT OUR CHILDREN
DEMAND.
IT JUST DOESN'T MAKE SENSE.

Maureen says IT'S A COMPELLING STORY,
GOOD LUCK, SAY I HAD TO SARA
FOR US, AN THANK YOU FOR
TALKING TO US.

Barbara laughs.

Karen says THANK YOU.

Maureen says COMING UP…

In a clip, Paul says EACH OF US IS FILLED WITH
ELECTRICITY.
MEASURING YOUR INNER VOLTAGE
ON MEDICINE 101.

The opening sequence rolls again.

Now, Maureen stands next to a screen that reads "Health Digest."

Maureen says AND NOW SOME
STORIES MAKING HEALTH NEWS,
CLOT BUSTING DRUGS THAT CAN
MINIMIZE STROKE DAMAGE MAY
LOCK LATER THAN EXPECT.

The TV screen next to her shows a picture of blue pills and brain images. A caption reads "Longer Lasting."

Maureen continues CURRENT WISDOM SAYS THE
DRUGS SHOULD BE GIVEN WITHIN
THE FIRST THREE HOURS AFTER
SYMPTOMS OF A STROKE.
BUT AUSTRALIAN RESEARCH SAYS THEY MAY PROVIDE BENEFIT
BEYOND THAT WINDOW.
USING A COMBINATION OF TWO
TYPES OF MRI SCANS TO LOOK
AT THE BRAIN, DOCTORS WERE
ABLE TO IDENTIFY STROKE
PATIENTS WHO BENEFITED FROM
THE DRUGS UP TO SIX HOURS
AFTER STROKE SYMPTOMS
APPEARED.

The caption changes to "Drug wait." A picture shows a clock, a needle and blue and red pills.

Maureen continues PEOPLE IN SEVERE PAIN WHO
HEAD TO THE ER COMPLAIN
THEY'RE WAITING TOO LONG FOR
PAIN KILLING MEDICATIONS.
THE SURVEY OF EMERGENCY
DEPARTMENTS IN THE U.S.
ASKED PATIENTS HOW LONG THEY
THOUGHT WAS A REASONABLE
TIME TO WAIT FOR PAIN
RELIEF.
23 MINUTES ON AVERAGE WAS
THE ANSWER.
BUT IN REALITY MOST OF THEM
WAITED ABOUT 78 MINUTES.
THOSE WITH ABDOMINAL PAIN
AND HEADACHES WAITED THE
LONGEST.
PROBABLY BECAUSE MEDICAL
STAFF WANT TO NAIL DOWN A
DIAGNOSIS BEFORE HANDING OUT
POWERFUL DRUGS.

The caption changes to "Research." A picture shows a rat and cardboard boxes.

Maureen continues AND THE UNIVERSITY OF
MISSISSIPPI OUREE HOPED A
RAT BOUTIQUE FOR SCIENTISTS
FEATURING INBRED HIGHBRED
AND GENETICALLY ENGINEERED
RODENTS.
INCLUDING RATS WHOSE BRAINS
HAVE BEEN CHEMICALLY DAMAGED
TO SIMULATE PARKINSON'S
DISEASE AND RATS BRED TO
BECOME OBESE ON A NORMAL
DIET.
SOMETHING FOR EVERYONE.
THE BOUTIQUE HAS BEEN NAMED
THE RAT RESOURCE AND
RESEARCH CENTRE.

(music plays)

Maureen says INSIDE EACH OF
US IS A SMALL GENERATE THEIR
ACTUALLY PRODUCES
ELECTRICITY.
IT'S CALLED THE HEART.
AND THAT'S WHAT
ELECTROCARDIOGRAMS MEASURE,
THE HEARTS VOLTAGE.
PAUL CALD WEM WITH MORE ON
THE ECG.

Paul sits at a table next to a piece of equipment. Behind him, a human anatomy model and lamp sit on a piece of furniture.

Paul says DID YOU KNOW THAT YOUR
ENTIRE BODY PRODUCES SMALL
AMOUNTS OF THE SAME KIND OF
ELECTRICITY AS THIS BATTERY?
EVERY SINGLE CELL WITHIN THE
BODY HAS A DIFFERENT
ELECTRICAL CHARGE ON THE
INSIDE OR THE OUTSIDE.
DURING MANY CELL FUNCTIONS
THIS ELECTRICAL CHARGE
CHANGES.
NOWHERE IN THE BODY IS THIS
MORE APPARENT THAN IN THE
HEART OR THE NATURAL
PACEMAKER CELLS FIRE
REGULARLY TO INITIATE A
HEART CONTRACTION.

The caption changes to "Doctor Paul Caldwell. Family Physician."

He continues IN 1887 A DUTCH FISIOLOGIST
TRIED TO MEASURE THE SMALL
AMOUNT OF ELECTRICITY THAT
WAS PRODUCED BY THESE
PACEMAKER CELLS.
HE ATTACHED SENSE ORS TO THE
LIMBS AND CHEST WALL AND
FOUND HE COULD PICK UP A
SMALL ELECTRIC CURRENT WITH
EACH HEARTBEAT.
WE ARE NOT TALKING ABOUT
ENOUGH CURRENT TO TURN ON A
RADIO HERE.
THAT WOULD NEED 220 VOLTS
BUT HE FOUND THAT IF THE
SKIN HE COULD MEASURE ONE
MILLI VOLT OF CURRENT EACH
TIME THE HEART CONTRACTED
AND BY MOVING HIS SENSORS
AROUND THE BODY HE COULD
PRODUCE A PICTURE OF THE
ELECTRICAL ACTIVITY WITHIN
THE HEART.
HE CALLED THIS TECHNIQUE AN
ELECTROCARDIOGRAPH, ELECTRO,
FROM THE WORD ELECTRICITY,
CARDIOFROM HEART AND GRAPH
MEANING PICTURE.
WE NOW KNOW IT IS THE ECY...
ECG.
TODAY AN ECG MACHINE LOOKS
LIKE THIS.
VARIOUS LEADS OR SENSORS ARE
ATTACHED TO YOUR ARMS AND
LEGS AND ALSO ACROSS THE
FRONT OF YOUR CHEST.

He attaches a red sensor to the palm of his hand.

He continues THESE LEADS SENSE THE
ELECTRICITY IN 12 DIFFERENT
COMBINATIONS AND THEN SPIT
OUT A GRAPH.
IT'S A PHOTOGRAPH OF WHAT
THE ELECTRICITY OF THE HEART
LOOKS LIKE AT THAT
PARTICULAR TIME.
THERE ARE THREE DIFFERENT
PARTS TO THE
ELECTROCARDIOGRAM.

He points to a paper that shows a drawing of the heart and continues THE FIRST PART, THE P-WAVE
SHOWS THE ELECTRICAL
ACTIVITY OF THE ATRIA OR
COLLECTING CHAMBERS OF THE
HEART.
THE NEXT PART, SHOWS THE
ELECTRICAL ACTIVITY WHEN THE
VENTRICLES CONTRACT.
AND THE LAST PART REVEALS
THE ELECTRICAL ACTIVITY VENT
RI... VENTRICLES COME BACK
TO NORMAL.
HERE IS WHAT A NORMAL
ELECTROCARDIOGRAM LOOKS
LIKE.
AND HERE IS AN LEC CHRO...
ELECTROCARDIOGRAM SHOWING
HEART BLOCK, THE PBS WAVES
OF ATRIAL CONTRACTION DON'T
PRODUCE ANY CONTRACTION IN
THE VENTRICLE, THE HEART IS
NOT CONTRACTING.
AND THIS ONE IS A LIFE
THREATENING RHYTHM CALLED
FIBRILLATION OF THE
VENTRICLE MEANING THEY
AREN'T CONTRACTING, THEY ARE
JUST QUIVERING, NO BLOOD IS
FLOWING OUT OF THE HEART.

Next, he points to a steady electrocardiogram and then to a wavy one.

He continues THE ECG IS OFTEN USED TO
DIAGNOSE A HEART ATTACK.
HERE IS WHAT IT LOOKS LIKE.
THE HEART CELLS AREN'T
GETTING ADEQUATE BLOOD FLOW
AND THAT CHANGES THE
ELECTRICITY PATTERNS.
YOU CAN SEE THE DIFFERENCE
IN THE CONFIGURATION OF THIS
AREA OF THE ECG.

Now, he points to a line graph with ascending and descending curves and to another one with a high peak.

He continues NOT BAD FOR SOMETHING
MORE THAN A CENTURY OLD.
IT IS CHEAP, NONINVASIVE AND
GIVES A LOT OF INFORMATION.
AND JOANIE MITCHELL SAYING
YOU TURN ME ON, I'M A RADIO,
I DON'T THINK SHE WAS
TALKING ABOUT HAD TRO
CARDIOGRAM BUS SHE WAS
TALKING ABOUT THE SAME
PRINCIPLES, EACH OF US IS
FILLED WITH ELECTRICITY,
SOME DAYS IT IS THE
ELECTRICITY OF LOVE.
BUT MANY DAYS IT JUST OUR
BATTERIES RUNNING LOW.

Maureen says TO GET TRANSREPRESENT...
TRANSCRIPTS OF MEDICINE 101
VISIT OUR WEB SITE
WWW.TVO.ORG/YOUR HEALTH.
BEFORE WE GO, A LOOK AT ONE
OF THE STORIES WE ARE WILL
HAVE NEXT WEEK ON "YOUR
HEALTH."

A clip plays.

A young woman says WENT IN FOR THE RESULTS
AND THEY DON'T WASTE ANY
TIME TELLING YOU, THEY TILL
AS SOON AS YOU WALK INTO THE
ROOM, LIKE, YOU KNOW, YES,
YOU HAVE INHERITED THE GENE
FOR HUNTINGTONS.
AND IT WAS PROBABLY THE
WORST NEWS I HAVE EVER HAD.

The clip ends.

Maureen concludes THAT IS NEXT
WEEK ON "YOUR HEALTH" I'M
MAUREEN TAYLOR, THANKS FOR
WATCHING.

(music plays)

A final slate reads "Your Health. Email: yourhealth@tvo.org. Fax: 416-484-4519. Mail: Box 200, Station Q, Toronto, ON, M4T 2T1."

The end credits roll.

Executive Producer, Patricia Ellingson.

Host and Producer, Maureen Taylor.

Producer, Cathy Perry.

Director, Michael Smith.

Logo: CEP Local 72m.

A production of TVOntario. Copyright 2002, The Ontario Educational Communications Authority.

Watch: Your Health Season 3 Episode 23