[♪♪] >> WELCOME TO TONIGHT'S NEXT CHAPTER FORUM WHERE WE WILL BE TALKING ABOUT CAREGIVERRING FOR CAREGIVERS.

THIS IS OUR INITIATIVE ON AGING CALL ADD NEXT CHAPTER THAT FOCUSES ON THE REWARDSES AND CHALLENGES OF CAREGIVING.

I'M Dr. WAYNE TUCKSON, I ENCOURAGE YOU TO GO TO OUR WEBSITE, KET.ORG/NEXT CHAPTER WHERE YOU WILL FIND RESOURCES THAT WILL PROVIDE YOU WITH ADDED INFORMATION ABOUT THIS AND PAST SEGMENTS FROM THIS SERIES.

FOR THE PAST YEAR-AND-A-HALF, MY WIFE AND I HAVE HAD THE PLEASURE OF HAVING MY MOTHER LIVE WITH US.

THOUGH IT'S BEEN AN HONOR AND PLEASURE TO HAVE MOM IN THE HOUSE I WOULD BE LESS THAN HONEST IF I DID NOT ADMIT THIS IS NOT THE SITUATION I FORESAW FOR US AT THIS STAGE OF OUR LIVES.

I HEARD A TED TALK ENTITLED A CAREGIVERS RECIPE TO MENTAL HEALTH DELIVERED BY, AND SHE QUOTED ROSILYN CARTER AS SAYING THERE ARE FOUR TYPES OF PEOPLE IN THIS WORLD.

ONE, THOSE WHO HAVE BEEN CAREGIVERS.

TWO, THOSE WHO ARE CAREGIVERS.

THREE, WHO WILL BE CAREGIVERS.

AND FOUR, THOSE WHO WILL NEED A CAREGIVER.

OUR PARENT NET WEEK PBS HAS A NEW DOCUMENTARY THAT AIRS AND SHARES THE POWERFUL OFTEN UNTOLD STORIES OF FAMILY CAREGIVERS.

BRADLEY COOPER EXPLORES THE ROLE THAT MOST OF US WILL PLAY.

YOU CAN STREAM THAT ON-LINE AND ON DEMAND AT PBA.ORG.

WHILE A CAREGIVER AND THE CARE FOR MAYBE OF ANY AGE TONIGHT WE WILL BE CONCENTRATING ON CARING FOR THE OLDER PERSON, THE PERSON WILL BE A PARENT BUT IT ALSO MAYBE A SPOUSE, SIBLING OR OTHER RELATIVE OR A FRIEND.

WITH THE HELP FROM OUR STUDIO PANEL AND INTERESTING PEOPLE WITH WHOM YOU WILL LATER MEET WE WILL BE EXPLORING MANY TOPICS YOU MAY HAVE PREVIOUSLY CONSIDERED, HAVE CONCERNS ABOUT, AND PROBABLY SOME THAT YOU HAVEN'T THOUGHT ABOUT.

TONIGHT WE HAVE ASSEMBLED PANELISTS WHO HAVE EXPERIENCE WITH CAREGIVERS AND WORKING IN THE ARENA OR BOTH.

MS. VICTORIA ELRIDGE, THE COMMISSIONER OF THE DEPARTMENT OF AGING AND INDEPENDENT LIVING IN THE KENTUCKY CABINET FOR HEALTH AND FAMILY SERVICES.

MS. MARGARET MCCLOSKEY, AN AARP VOLUNTEER AND IS RETIRED SOCIAL WORKER WITH MANY YEARS OF EXPERIENCE.

MARGARET WAS A CAREGIVER TO HER HUSBAND AND PARENTS IN THE PAST.

BARBARA GORDON, THE DIRECTOR OF COMMUNITY ENGAGEMENT AT THE UNIVERSITY OF LOUISVILLE TRAGER INSTITUTE AND INSTRUCTOR AT THE UNIVERSITY OF LOUISVILLE KENT SCHOOL OF SOCIAL WORKER AND SCIENCE.

Mr. ANTHONY JACKSON, Mr. JACKSON IS A PROJECT MANAGER AT LOCKHEED MARTIN AND AARP VOLUNTEER AND IS A CAREGIVER FOR THIS FATHER.

AND AMANDA DAVIS THE NATIONAL FAMILY CAREGIVER COORDINATOR WITH THE KENTUCKY REGIONAL PLANNING AND DEVELOPMENT AGENCY ON AGING AND INDEPENDENT LIVING.

WELCOME TO YOU ALL AND THANK YOU FOR BEING WITH US TONIGHT.

WE'RE GOING TO START BY HEARING FROM KATHY WASHINGTON.

KATHY HAS BEEN A CAREGIVER FOR HER PARENTS AND HUSBAND.

AND WORKED AS A PRIVATE DUTY CAREGIVER AND AGENCY CAREGIVER.

KATHY'S STORY WILL BE WOVEN IN AND OUT OF TONIGHT'S PROGRAM AS WE LOOK AT THE ASPECTS THAT COME WITH CAREGIVING.

>> KATHY WASHINGTON HOW DID YOU BECOME A CAREGIVER?

WHAT IS YOUR EXPERIENCE?

>> MY EXPERIENCE BEGAN WHEN MY FATHER WAS DIAGNOSED WITH PROSTATE CANNER -- CANCER.

AND ALSO OTHER FAMILY MEMBERS IN THE FAMILY WERE SICK AND WE WERE ABLE TO HAVE TAKE CARE OF THEM.

THE OTHER PIECE I WORKED AS A PRIVATE DUTY CAREGIVER AND ALSO AN AGENCY CAREGIVER THAT HAS BEEN MY EXPERIENCE WORKING WITH CAREGIVING.

>> YOU HAVE BEEN A PERSONAL CAREGIVER TO A LOVED ONE AND PART OF THE AGENCY, PRIVATE DUTY CAREGIVING YOU HAVE BEEN ON BOTH SIDES.

TELL US, WHAT WAS YOUR PERSONAL EXPERIENCE WHEN YOU HAD TO DECIDE WHAT KIND OF CARE TO GIVE THAT LOVED ONE, IN-HOME CARE OR A NURSING HOME THERE ARE OPTIONS.

HOW DO YOU MAKE THAT DECISION?

>> OF COURSE A PLETHORA OF OPTIONS, HOWEVER IT WAS PERSONAL.

AND SO FOR ME AND MY FAMILY, WE WANTED TO MAKE SURE MY DAD WAS COMFORTABLE AND TAKEN CARE OF PROPERLY WE DID IT NATURALLY IT'S WHAT WE DO AS A FAMILY MEMBER YOU STEP?

IN AND TAKE CARE OF YOUR LOVED ONES.

I WANTED TO MAKE SURE MY DADDY WAS GETTING THE RIGHT CARE AND MAKING SURE HE WAS CARED FOR PROPERLY AND HIS NEEDS WERE MET.

THERE WERE TIMES AS A CAREGIVER YOU HAVE TO TAKE BREAKS.

AND IT'S ALSO TAXING ON YOU MENTALLY AND WE HAD JOBS I COME FROM A FAMILY OF SIX AND WE ALL HAD JOBS SO WE ROTATED TO TAKE CARE OF MY FATHER.

AND WITH MOTHER WHEN SHE HAD A STROKE WE TOOK TURNS WHILE THE OTHER WENT HOME TO TAKE CARE OF OUR LOVED ONES.

>> WAS THERE EVER ANY FEELING THAT THE BALANCE OF DUTIES AMONGST THE SIBLINGS WERE UNEQUAL OR SOMEBODY HAD TO CARRY THE LION'S SHARE OF IT?

>> YES, SOMETIME IT IS SEEMED UNEQUAL SOME PEOPLE HAVE OTHER STRENGTHS DIFFERENT STRENGTHS WITHIN OUR FAMILY.

ALL ARE DIFFERENT.

FOR ME I WAS THE MOST PROMINENT CAREGIVER.

SO I WAS ABLE ALSO TO RELY ON RESOURCES.

BECAUSE I WORKED IN THE FIELD I WAS ABLE TO CAUSE HEY IS THAT GOING ON HERE?

IT'S A VERY UNIQUE OPPORTUNITY TO BE ABLE TO TAKE CARE OF YOUR FAMILY AND TO HAVE THE RESOURCES AND EXPERTS IN THE FIELD TO SAY, HEY PICK UP THE PHONE AND THIS IS GOING ON WHAT DO YOU THINK.

AND HE HELPED US IN MAKING SURE THAT MY DAD RECEIVED THE PROPER SERVICES THEY WERE IN WESTERN KENTUCKY AND I WAS IN LOUISVILLE AND I HAD NO IDEA WHAT WAS GOING TO HAPPEN.

HAVING RESOURCES IS ALSO VERY IMPORTANT TO TAKE CARE OF YOUR LOVED ONES.

>> BARBARA, KATHY BROUGHT UP AN INTERESTING POINT.

SHE WAS THE PROMISE NENTD POINT PERSON TO TAKE CARE OF THINGS.

MY QUESTION IS: ARE CAREGIVERS BORN?

OR IS CAREGIVING THRUST UPON THEM?

>> I THINK IT'S BOTH.

AND MY EXPERIENCE PROFESSIONAL EXPERIENCE ESPECIALLY, I'VE WORKED WITH CAREGIVERS WHO BEGRUDGINGLY BECAME A CAREGIVER BECAUSE THEY WERE THE ONLY ONE.

I WAS TALKING TO AMANDA ABOUT ONLY CHILDREN.

I KNOW MANY FAMILIES WHERE THERE'S ONE CHILD THE ONLY CHILD AND THEY ARE THE ONLY ONE AVAILABLE TO TAKE CARE OF THEIR LOVED ONE THEIR PARENT OR PARENTS.

I ALSO KNOW MANY FAMILIES WHERE THE CAREGIVER WAS CHOSEN NOT PAUSE THEY WANTED TO BE THE CAREGIVER BUT PAUSE THEY HAD THE MOST RESOURCES THEY HAD THE AVAILABILITY.

THEY WEREN'T WORKING.

AND I ALSO KNOW THOSE WHO WILLINGLY CARE FOR THEIR LOVED ONE BECAUSE THEY ARE A CARRIER.

THEY WERE BORN WITH THAT GIFT OF CARING.

IT IS A REAL THING.

>> IN YOUR HOUSEHOLD, OR YOUR FAMILY YOU BROUGHT YOUR FATHER IN WITH YOU.

YOU'VE GOT SIBLINGS.

HOW DOES THAT DECIDE WHO IS GOING TO BE THE ONE?

>> WELL, MY FAMILY MY SIBLING LIVES FAR AWAY IT WAS BY DEFAULT IT WOULD BE ME.

BUT THAT WAS OKAY.

MY WIFE HELPED SHE HAS THAT DYNAMIC.

SHE WAS MAINTAINING THE LAUNDRY, FOOD WHILE I TOOK CARE OF THE DAY-TO-DAY NEEDS AT MY PARENTS' HOUSE.

I WAS RUNNING UP AND DOWN THE STAIRS FOUR, FIVE TIMES A DAY.

I WOULD CARRY THE FOOD UP AND BRING IT DOWN.

SOMETIMES I DANCE WITH MY MOM A LITTLE BIT.

SHE MAY NOT HAVE BEEN ABLE TO STAND.

JUST TO GIVE HER ENTERTAINMENT AND I LOOKED SO RIDICULOUS SHE WOULD HAVE SOMETHING TO LAUGH ABOUT.

JUST THAT WONDERFUL OPPORTUNITY TO SPEND THAT TIME WITH THEM.

WE SHARED IT BETWEEN MY WIFE AND I.

AND WHEN MY BROTHER DID COME.

HE WAS IN THE MIX AS WELL.

>> YOU HAVE A BIG FAMILY.

ARE YOU THE CHOSEN CHILD AMONGST THE REST?

OR THE SAINT?

IS THAT HOW YOU BECAME THE CAREGIVER?

>> WELL, WHAT A QUESTION.

NO, SO MY FAMILY'S VERY LARGE AS YOU INDICATED.

THERE WERE NINE OF US, SEVEN BOYS TWO GIRLS I WAS THE OLDEST DAUGHTER.

AND BOTTOM LINE IS EVEN TODAY MY PARENTS ARE GONE, BEEN GONE FOR A LONGTIME BUT I AM THE CARRIER.

I CARE FOR MY YOUNGER BROTHER BEFORE HE PASSED AWAY.

I WAS THE PRIMARY ONE THAT THEY LOOKED TO THEY CALLED UPON TO TAKE CARE OF EVERYTHING.

AND THERE'S A LOT OF DYNAMICS BEHIND THAT BUT I'M THE OLDEST DAUGHTER AND THERE IS A OLDEST DAUGHTER SYNDROME IN CAREGIVING.

OFTEN I'VE WORKED WITH MANY FAMILIES WHERE IT WAS THE OLDEST DAUGHTER WHO TOOK OWN THE ROLE.

MOST OF THE TIME WILLINGLY BECAUSE THEY SERVED IN THAT ROLE IN SO MANY OTHER CAPACITIES.

>> VICTORIA, THE DYNAMIC WHO IS TAKING CARE OF THE PARENT IS CHANGING.

IT USED TO BE THAT YES, OF COURSE, IT'S GOING TO BE THE WOMAN.

IT'S GOING TO DO THAT.

ARE WE STILL SEEING THAT TREND?

AND IS THAT A GOOD THING?

>> I THINK IT ABSOLUTELY IS A GOOD THING.

PERSONALLY I HAVE A DAUGHTER AND THREE SONS AND MY MIDDLE SON I WILL BE WILL BE MY CARRIER.

AND IT'S IMPORTANT TO HAVE THE CONVERSATIONS EARLY ON AND IDENTIFYING WHO WOULD BE THE ONE TO STEP UP TO CARE FOR THE PARENTS.

TO THE POINT HAVING THE FLEXIBILITY AND EMPLOYER THAT SUPPORTS THE ABILITY TO WORK AND ALSO TO BE THERE TO CARE FOR A LOVED ONE.

THOSE POLICIES ARE IMPORTANT.

AND MAY ULTIMATELY DETERMINE WHICH OF THE CHILDREN ARE THE CARE 'ER BASED ON THEIR AVAILABILITY.

>> ARE YOU SEEING THIS?

OR USUALLY IT'S GOING TO FALL UPON THE WOMAN IN THE HOUSEHOLD?

>> NO, I HAVE ALL KINDS, MALE, FEMALE, GRANDDAUGHTER, GRANDSON, NIECE, NEPHEW, SPOUSE, NEIGHBOR.

IT'S ANYBODY IT IS NOT JUST THE OLDEST DAUGHTER.

NOT JUST THE WEALTHIEST SON OR WHATEVER THE CASE MAYBE.

IT'S ANYBODY.

>> IN YOUR CASE, MARGARET, HOW IS IT THAT YOU BECAME THE CAREGIVER IN YOUR HOUSEHOLD?

>> WELL, FOR MY SPOUSE, I WAS THE MOST RECENT I CARED FOR, IT WAS JUST ME.

MY HUSBAND AND WE FOUND EACH OTHER LATE IN LIFE I WILL ADD.

BUT HE HAS -- HE HAD FOUR CHILDREN.

THREE GIRLS AND ONE SON.

AND THEY LIVED A COUPLE OF THEM LIVED IN THE LEXINGTON AREA.

ANOTHER ONE LIVED IN ANOTHER CITY.

IN THE STATE.

AND ONE LIVED IN THE WESTERN STATE.

SO THEY WERE SPREAD OUT.

THEY WERE ALL WORKING.

THEY ALL HAD FAMILIES AT THIS TIME I WAS RETIRED.

SO IT WAS JUST NATURAL.

BUT, TO FOLLOW-UP WITH WHAT YOU WERE ASKING BARBARA, I WANTED TO.

I WANTED TO CARE FOR THIS BEAUTIFUL LOVELY MAN THAT I WAITED MANY, MANY, MANY YEARS, BECAUSE WE JUST GELLED SO BEAUTIFULLY.

I THINK SOMETIMES FAMILY DYNAMICS IF YOU GO BACK AND RESEARCH THE FAMILY HISTORY MAYBE SOME WERE MORE WILLING, LET'S SAY, TO BE A CAREGIVER FOR DAD WHILE HE WAS SO STERN I DON'T WANT TO TAKE CARE OF HIM.

THOSE FACTORS DO BECOME HE HAVE DENT SOMETIMES.

SO IN MY CASE I WAS NOT -- DID NOT FEEL PRESSURED.

I DIDN'T FEEL AT THAT TIME I WAS DOING A DUTY.

I DIDN'T SAY WELL, I DIDN'T SIGN UP FOR THIS BECAUSE CLEARLY I DID.

SO I THINK IT'S -- I THINK THOSE WHO BECOME CAREGIVERS BECAUSE THEY DO IT OUT OF LOVE.

SOME MAYBE MORE SINCERE LOVE THAN OTHERS.

BUT IT ALSO IS INDICATIVE OF WHAT THEY WERE TAUGHT AND HOW THEY SEE THE CARE GIVING IN THEIR FAMILIES.

FAMILY HISTORY, I THINK, IN BARBARA'S CASE HAS A BIG FAMILY AND I'M SURE THERE WAS A VARIETY THERE.

BUT I THINK IT'S STILL I MAY BE WRONG BUT I THINK IT'S STILL AT LEAST WHAT I'VE SEEN SO FAR, THE WOMEN ARE THE NUMBER ONE CAREGIVERS AND THEN, OF COURSE, ANTHONY IS AN EXCEPTION.

WE ALL KNOW THAT.

>> ALL RIGHT, ANTHONY, TAKE ME TO THE CONVERSATION YOU HAD WITH YOUR WIFE.

MY DEARLY LOVELY BRIDE, BY WAIT.

>> W50ED A CONVERSATION WHEN WE FIRST MET.

I SAID I THINK YOU HAVE SOME KIDS?

I DON'T BUT MY PARENTS ARE GOING TO LIVE WITH US.

AND SHE LOOKED AT ME AND SAID OKAY WE CAN DO THAT.

I SAID I'M SERIOUS AND SHE AGREED BECAUSE THAT IS SOMETHING THAT I FELT THAT I WANTED TO DO FROM CHILDHOOD.

AND I MOVED TO KENTUCKY FOR THAT REASON.

SO I COULD BE CLOSER AND BE ABLE TO SUPPORT THEM IN EVERYTHING THAT THEY NEEDED TO DO TO MAKE SURE THEY HAD THE CARE THAT THEY NEED.

AND I WAS ALSO CONCERNED ABOUT THE WAY THEY WOULD BE TREATED.

AND WHETHER OR NOT A NURSING FACILITY IF THEY WOULD BE KIND AND CARING AND I RECOGNIZED MY OWN PERSONALITY.

I WOULDN'T BE HAPPY IF THEY WERE MISTREATED.

I FELT COMPELLED TO BE IN THE HOUSE WITH ME AND MY WIFE, THANK GOD, SHE AGREED.

AND WE WORKED TOGETHER AS A TEAM TO MAKE IT HAPPEN.

>> HOW DOES THAT GO?

HERE HIS WIFE IS A SAINT.

YOU TOLD ME TO SAY THAT ABOUT YOUR WIFE.

[LAUGHTER] HOW DOES THAT GO SAYING OKAY WE'RE GOING TO BRING SOMEBODY ELSE INTO THE HOUSE AND YOU ARE NOW GOING TO BE A CAREGIVER FOR SOMEONE?

WHO IS RELATED TO ME?

>> SO, THEY NEED TO KNOW ABOUT RESOURCES AVAILABLE TO THEM.

AND TO KNOW THEY ARE NOT CAREGIVING ALONE.

THERE ARE PEOPLE OUT THERE THAT CAN HELP THEM AND THERE'S RESOURCES THAT THEY CAN TAP INTO TO BRING INTO THE HOME WHETHER THAT'S THROUGH THE OLDER AMERICANS ACT, WHETHER THAT'S THROUGH THE AREA AGENCIES AND AGING AND THE PROGRAMS WE HAVE TO OFFER.

GETTING THEM TO UNDERSTAND THAT THEY THE EDUCATION EDUCATING PEOPLE SO THAT WHEN THEY ARE THRUSTED INTO LIKE BARBARA WAS TALKING ABOUT, ALL OF A SUDDEN THAT THEY KNOW WHERE TO CALL AND THEY KNOW WHO TO CALL TO HELP GET RESOURCES TO HELP THEM WHEN THEY ARE IN THE HOME WITH THEM.

>> IF I COULD SHARE ABOUT THE CONVERSATION, MY SITUATION WAS A BIT DIFFERENT.

IT WAS BEFORE THE NATIONAL FAMILY CAREGIVER PROGRAM WHEN I TOOK CARE OF MY MOM.

AND WE WOULD HAVED HER FROM CLEVELAND, OHIO TO FRANKFORT KENTUCKY AND SHE LIVED WITH US FOR FIVE YEARS BEFORE SHE PASSED AWAY.

MY CHILDREN WERE IN ELEMENTARY AND MIDDLE SCHOOL.

I HAD TO HAVE THE CONVERSATION WITH MY HUSBAND ABOUT BRINGING MY MOM INTO OUR HOME.

AND US TAKING CARE OF HER.

IT IS A DIFFERENT KIND OF CONVERSATION WHEN YOU HAVE YOUNG CHILDREN.

I'M THE EPITOME OF THE SANDWICH GENERATION OUR SITUATION WAS A DIFFERENT CONVERSATION.

I WOULD SAY THAT MY HUSBAND IS A SAINT.

BECAUSE HE DIDN'T GIVE ME ANY TROUBLE.

BUT HE HAD SOME CONCERNS.

I BELIEVE I SHARE WITH YOU, WAYNE, THAT WHEN WE WERE CARING DAKOTA MEYER MOM, SHE DIDN'T HAVE MUCH.

HER SOCIAL SECURITY LITERALLY WAS $365 A MONTH.

PERIOD.

SO WE WERE NOT ONLY COMMITTING TO TAKE CARE OF HER NEEDS AND SHE HAD DEMENTIA.

SHE SHE COULD NOT TAKE CARE OF HERSELF AND WE WERE COMMITTING TO CARING FOR HER ECONOMICALLY.

SHE -- WE HAD TO BUY HER MEDICATIONS BECAUSE SHE HAD MEDICARE BUT THERE'S ALWAYS A COST.

PAY FOR HER MEDICAL BILLS ET CETERA.

WE HAD TO TAKE CARE OF HER BECAUSE SHE DID NOT HAVE THE RESOURCES TO TAKE CARE OF HERSELF ECONOMICALLY.

IT WAS A DIFFERENT CONVERSATION AND A DIFFICULT CONVERSATION AND MANY FAMILIES HAVE TO HAVE THOSE CONVERSATIONS TODAY.

>> TO YOUR POINT, AS FAR AS WHO STEPS UP TO TAKE CARE, YOUR CHILDREN HAVING THAT EXPERIENCE OF SEEING WHAT IT LOOKS LIKE TO TAKE CARE OF GRANDMA IN THEIR HOME AND THERE ARE A NUMBER OF CHILDREN THAT REMAIN IN SCHOOL BECAUSE THEY ARE THE PRIMARY CAREGIVER TO THEIR PARENTS OR THEIR GRANDPARENTS.

AND THROUGH TEAM KENTUCKY, WE HAVE BEEN THERE TO SUPPORT THE CHILDREN, THE ADULT CHILDREN AND ALSO A NUMBER OF OLDER ADULTS THAT ARE CARING FOR THEIR SIBLINGS OR NEIGHBORS AS WELL THROUGH THE PROGRAMS THAT WE OFFER.

>> IN THAT SAME POINT, THOUGH, WE HAVE ALL THE BEST INTENTIONS IN THE WORLD OF BRINGING MOM INTO THE HOUSE.

BUT WHEN YOU BRING SOMEBODY IN THEY HAVE ADDED MEDICAL EXPENSES, AND THEY HAVE OTHER COSTS.

WHAT IS KENTUCKY ABLE TO SAY WHAT PRIVATE ORGANIZATIONS BUT TAX CUT, HERE IS HOW WE CAN HELP YOU.

>> WELL, I THINK FIRST BEFORE YOU LOOK AT THE PRIVATE ORGANIZATIONS FINDING OUT THE PERSON YOU ARE CARING FOR WHAT IS IMPORTANT TO THEM WHAT DO THEY NEED AND HAVING THE DISCUSSIONS EARLY ON AND ALSO THROUGH TEAM KENTUCKY WE HAVE A PROGRAM CALLED CONNECT RESOURCES.

AND IT IS A ONE-STOP SHOP YOU CAN GO ON-LINE AND PUT IN YOUR ZIP CODE AND IT SHOWS THE LOCAL RESOURCES THAT ARE AVAILABLE IN DETERMINING WHAT IS NEEDED.

IS IT A MATTER OF ENSURING MOM HAS MEALS OR TRULY THAT YOU NEED IN-HOME ASSISTANCE DO YOU NEED FINANCIAL ASSISTANCE AND THROUGH CONNECT RESOURCES AT TEAM KENTUCKY HAS ALL OF THOSE AVAILABLE AND IT'S BASED ON YOUR ZIP CODE AND WHAT IS IMPORTANT TO YOU.

AGAIN AT THE HEART IS UNDERSTANDING WHAT IS IMPORTANT TO MY NANNA.

IS IT ENSURING THEY HAVE GOING TO THE LOCAL SENIOR CENTER TO HAVE THE ACTIVE SERVICES AND PROGRAMS OR IS IT MUCH MORE THEY LIKE TO BE ON THEIR OWN IN THEIR HOME?

>> BUT THEY NEED MORE FOOD AND USING MORE ELECTRICITY AND THOSE BILLS ARE GOING UP.

IS THERE ANYTHING TO HELP IN THAT REALM.

>> AT THIS TIME YES, THERE IS.

THROUGH TEAM KENTUCKY THROUGH GOVERNOR BESHEAR'S LEADERSHIP WE HAVE ENSURED OLDER ADULTS HAVE ACCESS TO MEALS.

TO THAT SINCE THE START OF THE TEAM KENTUCKY ADMINISTRATION WE HAVE PROVIDED 17 MILLION MEALS TO OLDER ADULTS ANYONE 60 AND OLDER CAN GET A MEAL THROUGH YOUR LOCAL SENIOR CENTER OR IF YOU ARE ONLY LIVING IN YOUR HOME AND NEED ASSISTANCE WE CAN PROVIDE HOME DELIVERED MEALS TO YOU.

ALSO THROUGH OUR COMMUNITY ACTION AGENCIES FINANCIAL ASSISTANCE IF YOU QUALIFY FOR UTILITY ASSISTANCE AS WELL.

>> OKAY.

IN YOUR EXPERIENCE OF TALKING WITH PEOPLE, HOW DOES IT LOOK WHEN PEOPLE DIVVY UP THE TIME TO BE WITH MOM?

OR DAD?

IN THE HOUSE?

>> YOU HAVE A WHOLE TRIBE OF PEOPLE COMING OUT OF CLEVELAND.

I GUESS NOW WE HAVE TO CALL THEM THE GUARDIANS COMING OUT OF CLEVELAND.

BUT NOT EVERYBODY IS GOING TO BE DOING AS KATHY MENTIONED THE SAME AMOUNT.

IS THERE SOMETHING THAT YOU SAY YOU WILL DO X AMOUNT OF TIME?

HOW DO WE DIVIDE UP AND CONQUER THIS PROBLEM?

>> THAT'S THE REALLY GOOD QUESTION.

I FOUND AS I MENTIONED MY HUSBAND HAD THREE DAUGHTERS AND ONE SON.

AND TWO OF THE DAUGHTERS LIVED IN THE LEXINGTON AREA.

NOW, THEY ALL HAD JOBS AND THEY ALL HAD CHILDREN, FAMILIES SO CARING FOR THEM.

AND THEY SAID EARLY ON THAT THEY DIDN'T WANT INTRUDE BECAUSE WE KNOW YOU'VE BEEN TOGETHER A SHORT TIME, 10 YEARS, AND WE -- IF AND WE DON'T WANT TO INTRUDE.

I THOUGHT WELL, GO AHEAD AND INTRUDE IF HE IS FAILING HERE.

AND ONE OF THEM, DID BECOME MORE ACTIVE WITH HIS CARE.

AND HELPING ME THAN ANY OF THE OTHERS.

BUT I THINK IT'S A PERSONAL THING.

I THINK AS WE WERE SAYING EARLIER, SOMEBODY WANTS TO CARE, WANTS TO CHECK IN IT'S EASY TO SAY WELL, I DIDN'T WANT TO INTRUDE.

WELL, JUST CALL THEN.

AND SAY IS THIS A GOOD TIME?

AFTER WE HAD MOVED HIM TO THE NURSING HOME, I HAD HIM AT HOME UNTIL THE LAST FEW MONTHS.

AND IT DID WEAR ME OUT.

BUT OUT OF LOVE FOR HIM, I STUCK IT OUT.

BUT I HAVE TO SAY THAT THE ONE DAUGHTER DID FINALLY SAY, WOULD YOU LIKE ME TO COME OVER AND SIT WHILE HE WAS STILL AT HOME, WOULD YOU LIKE ME TO SIT ON SUNDAY SO YOU CAN GO TO CHURCH.

AND I WAS LIKE FINALLY.

I THINK IT'S HARD TO SAY HOW DO YOU DIVVY IS UP.

I CAN GO BACK TO MY DAD, BECAUSE WHEN I WAS CAREGIVER FOR HIM, I JUST HAVE ONE SIBLING AND HE LIVES IN MASSACHUSETTS.

SO HE DIDN'T -- COULDN'T DO MANY HANDS ON CARE.

SO HE ASKED ME ONE TIME, WHAT CAN YOU DO TO HELP YOU?

TO RELIEVE YOUR STRESS?

AND I SAID, OH, THANK YOU.

YOU CAN MAKE PHONE CALLS.

QUESTIONS I HAVE FOR DOCTORS, INSURANCE, THINGS LIKE THAT.

FOLLOW-UP WITH THERAPISTS.

WHICH HE DID.

HE SAID NO PROBLEM BECAUSE HE WORKED FROM HOME.

SO THAT WAS A BIG RELIEF.

SO I THINK THE FAMILY DYNAMICS HOW YOU ALL GEL TOGETHER IN THE PAST, AND LOCATION.

LOCATION HAS A LOT TO DO WITH HOW YOU DIVVY IT UP.

SO I COULDN'T DIVVY UP ANYTHING THAT REQUIRED BEING RIGHT HERE.

BUT MAKING PHONE CALLS, HE COULD DO AND HE DID VERY WELL.

>> WE KNOW THAT CAREGIVING CAN BE TAXING ON THE CAREGIVER AND THE INDIVIDUAL BEING CARED FOR.

TO VICTORIA'S POINT, HOW CHRISTIE DUTTON ASKED KATHY WASHINGTON WHAT RESOURCES PEOPLE SHOULD BE AWARE OF TO PROVIDE SUPPORT FOR ANYONE THAT FINDS THEMSELVES PART OF A CAREGIVING JOURNEY.

>> YOU MENTIONED A FEW TIMES NOW, ABOUT RESOURCES.

PUTTING THE RESOURCES TOGETHER AND ALSO YOU ARE HAD IN A GREAT POSITION WHERE YOU ARE AN EXPERT HAVING WORKED IN THE FIELD TO KNOW WHERE SOME OF THE RESOURCES ARE.

FOR SOMEBODY IN THIS POSITION, CARING FOR A LOVED ONE, WHO MAY NEED SOME EXTRA HELP, TELL US SOME OF THE TOP RESOURCES THEY CAN RELY ON?

>> DEPENDING WHAT ILLNESS IT IS THEN YOU CAN REACH OUT.

LET'S SAY CANCER, AMERICAN CANCER SOCIETY.

KENTUCKY ADVOCATE AMERICANS AGAINST CANCER, THE AMERICAN LUNG ASSOCIATION THERE IS A WONDERFUL STROKE ORGANIZATION THAT WORKS VERY CLOSELY WITH STROKE VICTIMS AND HAS A VIRTUAL PLATFORM.

THE OTHER RESOURCES WERE HOME HEALTH AGENCIES, PROVIDE A LOT OF RESOURCES WHEN FAMILY MEMBERS CAN'T.

BUT IT'S IMPORTANT TO UTILIZE THE RESOURCES FOR RESPITE CARE IT'S IMPORTANT FOR THE CAREGIVER.

THERE'S ONE CALLED HELPERS -- HELPERS SOMETHING I APOLOGIZE FOR THAT.

THERE ARE A NUMBER OF RESOURCES OUT THERE AS IT RELATES TO TAKING CARE OF FAMILIES AND ALSO RESPITE CARE.

THERE'S HOME INSTEAD.

THEY COME IN AND PROVIDE RESOURCES FOR INDIVIDUALS THAT MAY NEED SOME TIME OFF.

JUST MAY NEED HELP.

THE OTHER THING FOR YOU ARE A CAREGIVER YOU TAKE CARE OF THEM SOMETIMES FROM THE BEGINNING OF THE STAGES OF ILLNESS TO THE END.

AND IT'S VERY IMPORTANT FOR THAT COMPASSIONATE CARE AS THEY MOVE ON TO THE NEXT AS THEY PASS ON IT'S IMPORTANT THAT PEOPLE KNOW ABOUT THE RESOURCES ON HOSPICE.

HOSPICE IS A GOOD RESOURCE THAT PEOPLE NEED TO THINK ABOUT AND UTILIZE AS IT RELATES TO ILLNESSES AND HAVING TAKE CARE OF YOURSELF AS WELL.

>> IT'S IMPORTANT TO HAVE RESOURCES FOR THE CAREGIVER THEMSELVES BECAUSE THIS IS AN EMOTIONAL, MENTAL LOAD THEY ARE CARRYING WITH THAT.

HOW DID YOU DEAL WITH THAT?

WERE THERE SUPPORT GROUPS?

WAS THERE HELP IN THAT WAY?

>> THERE ARE SUPPORT GROUPS.

ALTHOUGH I DID NOT TAKE THE ONION BUT I THINK IT'S IMPORTANT THAT YOU UTILIZE THE RESOURCES YOUR MENTAL HEALTH IS JUST AS IMPORTANT AS THE PERSON THAT YOU ARE TAKING CARE OF.

IF YOU DON'T CARE OF YOURSELF YOU CANNOT TAKE CARE OF SOMEONE ELSE EFFECTIVELY.

IN MY BIG FAMILY WE HAVE A COUPLE OF PSYCHOLOGISTS AND HOME HEALTH INDIVIDUALS AS WELL.

>> YOU HAVE A BUILT-IN SUPPORT.

>> I'M LUCKY.

HEY ARE YOU TAKING CARE OF YOURSELF AND FRIENDS WOULD SAY ARE YOU TAKING CARE OF YOURSELF?

I'M BRINGING A MEAL OVER ACCEPT THE INDIVIDUALS AND IT WAS HARD ACCEPT THE HELP.

>> BECAUSE IT TAKES A VILLAGE.

>> IT TAKES A VILLAGE.

>> KATHY WASHINGTON THANK YOU SO MUCH FOR YOUR TIME.

>> THANK YOU.

THANK YOU FOR HAVING BE.

>> SO MARGARET, YOU MADE MENTION ABOUT HOW ONE OF THE DAUGHTERS SAID LET ME COVER SUNDAY MORNING SO YOU CAN GO TO CHURCH.

TELL ME ABOUT SELF CARE.

IS THERE SOMETHING THAT SOMEONE HAS TO COME KATHY ELUDED TO IT BUT DO YOU RECOGNIZE YOU NEED IT OR SOMEBODY HAS TO SAY YOU KNOW YOU NEED TO DO SOMETHING?

>> WELL, AS A PROFESSIONAL, I SHOULD HAVE RECOGNIZED IT.

BUT AS THE SPOUSE, AND WORRYING ABOUT HIM AND CARING FOR HIM AND HELPING HIM TO THE BATHROOM AND EVERYTHING THAT IS ENTAILED WITH BEING A CAREGIVER ONCE THEY START TO DECLINE, I WAS NOT VERY GOOD AT SELF CARE.

BUT I DID LEARN PROBABLY TOO LATE TO BE HONEST, YOU SEE I COULDN'T PUT IT IN PERSPECTIVE WHEN IT WAS MY LOVED ONE.

WHEN IT WASN'T DIRECTLY MY SPOUSE, I COULD TELL OTHERS ABOUT YOU NEED TO LOOK AT THESE RESOURCES, YOU NEED TO CALL FOR HELP, CALL IN SOME FAMILY.

BUT I THOUGHT NOBODY CAN TAKE CARE OF MY HUSBAND LIKE I CAN.

WHICH IS TRUE AND NOT TRUE.

WHEN HE GOT TO THE NURSING HOME HE HAD CARE.

I HAPPEN TO KNOW THE ADMINISTRATOR THERE AND SHE IS A FELLOW SOCIAL WORKER SO I FELT FAIRLY COMFORTABLE HE WAS GOING TO BE WELLCARED FOR AND I WAS THERE EVERY EVERYDAY.

WHICH NOT EVERYBODY CAN DO IF YOU ARE NOT IN THE SAME TOWN.

SO I REALLY HAD A HARD TIME REALIZING THAT OTHERS COULD CARE FOR HIM.

AND I REGRET THAT NOW.

SO I'M HOPING THAT PEOPLE WHO LISTEN TO THIS ARE GO TO TALKS THAT ARE GIVEN WHERE THERE'S MORE HERE IN LEXINGTON THERE IS A LOT GIVEN ON THIS AT THE SENIOR CENTER, AND THERE'S AN AARP HAD A LOT OF THEM.

WE HAVE RESOURCE GUIDES WE HAVE IT PREPARED CARE GUIDE AND IT CAN ALL BE DOWNLOADED FROM THE COMPUTER.

SO THIS TO ME IN RETROSPECT, THE SELF CARE WAS THE BIGGEST ISSUE FOR ME.

BECAUSE WE CAN FIND RESOURCES, PEOPLE CAN COME IN.

HE WAS UNDER HOSPICE CARE.

I HAD NURSES COMING IN.

THERAPISTS COMING IN.

ALL THE PROFESSIONALS WERE THERE.

HE HAD TWO CANCERS GROWING INSIDE OF HIM UNFORTUNATELY.

BOTH NOT CURABLE AT THE SAME TIME.

SO HE DECLINED VERY QUICKLY.

WITHIN A YEAR.

YEAR, YEAR-AND-A-HALF.

>> SO SORRY.

>> SO IT WAS SUDDEN.

WHERE SOME PEOPLE IT'S NOT THAT SUDDEN.

THERE'S ALL KINDS OF DISASTERS HERE.

BUT SO I WAS REALLY NOT PREPARED AND YET I THOUGHT THAT I WAS.

>> BARBARA, TELL ME, WE'VE TALKED ABOUT SELF CARE.

BUT I DON'T KNOW WHAT IT IS.

IS IT JUST THE DAUGHTER COMING IN RELIEVING ME FOR HALF A DAY?

IS IT SOMEONE GOING OUT TO GET THE GROCERIES?

IS IT AS YOU TALKED ABOUT YOUR BROTHER MAKING THE PHONE CALL?

WHAT IS SELF CARE?

>> SO SELF CARE IS MANY THINGS.

I DO A TRAINING FOR CAREGIVERS CARING FOR THE CAREGIVER HELPING THEM TO UNDERSTAND THAT IT'S CRITICAL THAT THEY TAKE CARE OF THEMSELVES IF THEY WANT TO CONTINUE TO TAKE CARE OF THEIR LOVED ONE.

THERE'S DATA OUT TO HELP US UNDERSTAND THAT OFTEN MORE OFTEN THAN WE WARRANT CAREGIVERS BECOME ILL AND DIE BEFORE THE PERSON THEY ARE TAKING CARE OF.

AND IT'S BECAUSE THEY ARE NOT CARING FOR THEMSELVES.

INCLUDING NOT GOING TO DOCTOR'S APPOINTMENTS, NOT TAKING THEIR MEDICATIONS PROPERLY, NOT EATING PROPERLY.

SO WE TRY TO BREAK IT DOWN TO THEM ABOUT ALL OF THOSE DIFFERENT THINGS.

THINGS THAT WE DON'T THINK ABOUT AS CARING FOR OURSELVES OR SELF CARE BUT IT'S TAKING THAT MOMENT TO REST.

IF YOUR LOVED ONE IS SUNDOWNING THAT MEANS THEY ARE UP AT NIGHT ALL THE TIME THEN YOU NEED TO TRY TO FIND RESPITE SO YOU CAN HAVE TIME TO SLEEP DURING THE DAY.

OR AT NIGHT WHILE THAT LOVED ONE IS SUNDOWNING.

IF YOU HAVE MEDICAL APPOINTMENTS THAT YOU NEED TO GET TO, YOU NEED TO TRY TO FIND RESPITE ADULT DAYCARE SERVICES SOME OF THOSE THINGS THAT WILL HELP YOU TO BE ABLE TO DO THAT.

THAT IS PART OF SELF CARE.

IT INCLUDES HAVING TIME TO GO TAKE A WALK OUTSIDE.

GET SUNSHINE.

IT'S NOT ALWAYS GOING TO GET YOUR NAILS DONE OR MASSAGE ALTHOUGH THOSE THINGS ARE GOOD, TOO.

BUT IT REALLY ARE THOSE LITTLE THINGS.

AND I DO WANT TO SHARE SOMETHING THAT KATHY SPOKE ON ABOUT RESOURCES.

SOMETHING THAT I FOUND AND I'VE BEEN DOING THIS FOR A VERY LONG TIME.

WELL OVER 40 YEARS.

AND IT'S -- I'VE NEVER GOTTEN AWAY FROM CAREGIVERS NOT ALL, BUT MANY CAREGIVERS WHO HAVE THE MOST CHALLENGING TIME FINDING RESOURCES.

AND OFTEN IT'S JUST THE FRUSTRATION OF THE SYSTEM.

IT'S THE FRUSTRATION OF THE SYSTEM.

AND KATHY LISTED A LOT OF WONDERFUL RESOURCES.

MANY OF THEM ARE NOT FREE.

MANY OF THEM REQUIRE A DOCTOR'S ORDER.

SO UNDERSTANDING THE SYSTEM IS ALSO PART OF SELF CARE.

BECAUSE YOU CAN GET SO FRUSTRATED THAT NOT ONLY DO YOU NOT RECOGNIZE YOU NEED SELF CARE, YOU DON'T SEEK IT BECAUSE YOU CAN'T FIGURE OUT THE SYSTEM.

>> VICTORIA, ISN'T THERE A HIGH ILLNESS RATE AMONGST THE CAREGIVERS?

>> ABSOLUTELY.

YES.

ABSOLUTELY.

AND IT IS SOMETHING THAT TEAM KENTUCKY IS CONTINUING TO WORK ON.

OBVIOUSLY THROUGH OUR MEDICAID EXPANSION UNDER GOVERNOR BESHEAR'S LEADERSHIP TO THAT WE HAVE OPERATED THROUGH THE DEPARTMENT FOR AGING AND INDEPENDENT LIVING A NUMBER OF PROGRAMS TO SUPPORT THE CAREGIVER.

IN MANY INSTANCES THE CARRIE SEEMIENT IS THE FOCUS.

WE ARE FOCUSED ON THE CAREGIVER.

WE ARE WRAPPING UP A FEDERAL GRANT PROGRAM CALLED BRIDGING THE GAP WHERE WE ARE SUPPORTING THE CAREGIVER AND ENSURING THEY HAVE THE RESPITE SERVICES THEY NEED TO CARE FOR A LOVED ONE.

WE ARE WORKING ON ROLLING OUT ANOTHER PROGRAM WHERE IT'S PEER TO PEER AND FAMILY TO FAMILY CAREGIVER.

WE KNOW THAT CAREGIVERS ARE SUCCESSFUL WHEN THEY HAVE THAT SUPPORT SYSTEM.

SO THAT IS SOMETHING THAT WE ARE WORKING TOWARDS ROLLING OUT.

AND EXCITED TO LAUNCH IN THE FUTURE LATER THIS YEAR WHERE WE ENSURE THERE IS SOMEONE TO TALK TO.

AS MUCH AS WHAT WE TALK ABOUT THE SELF CARE COMPONENTS, THE MENTAL HEALTH OF THE CAREGIVER IS AT THE CORE OF THAT.

>> ANTHONY, COULD YOU TELL ME, FROM YOUR EXPERIENCE OF WORKING WITH MANY PATIENTS, PEOPLE IN THIS POSITION, SOMETIMES UNLIKE MARGARET'S BROTHER WHO WANTED TO MAKE PHONE CALLS, SOMETIMES WE HAVE FAMILY MEMBERS THAT ADD THE FAMILY DYNAMICS INCREASE THE HASSLES WHICH WE ARE UNDER.

HOW DO WE NEGOTIATE THAT WHEN CARING FOR A LOVED ONE, PARTICULARLY WHEN A PERSON YOU ARE THE PRIMARY PERSON PROVIDING THE CARE?

>> VERY CAREFULLY.

AND OUR PARTICULAR EXAMPLE WE JUST WANTED TO MAKE SURE THAT THE FOCUS WAS ON MY MOM AND DAD AND WE TOOK CARE OF BOTH MY PARENTS FOR FOUR-AND-A-HALF YEARS.

SO IT WAS TO SIT DOWN AND UNDERSTAND THE OTHER PERSON'S PERSPECTIVE.

WHAT IS IT THAT YOU ARE THINK BEING?

EVEN IF YOU ARE NOT SHOWING THE SAME OUTWARD EMOTIONS THAT IS YOUR MOM AND DAD, TOO.

OBVIOUSLY THERE'S FEELINGS THAT YOU ARE EXPERIENCING AND TRYING TO DEAL WITH.

HOW CAN I HELP YOU?

SO I WAS THE PRIMARY CAREGIVER SO MY BROTHER AND I HE LIVED IN MARYLAND, HE WASN'T CLOSE BY.

IT WAS TRYING TO GET A SENSE WHAT IS IT THAT YOU CAN DO AS YOU MENTIONED BEFORE PERHAPS MAKING PHONE CALLS IN HIS CASE I KNOW HE WANTED TO COME AND HE COULDN'T THAT OFTEN.

WE WERE TRYING TO FIGURE OUT WHAT IS THAT GOING TO LOOK LIKE.

I WOULD LET HIM KNOW I'M WORN OUT TIRED.

IT'S JUST HUMAN CAN YOU COME OUT.

AND SOMETIMES THE ANSWER WAS YES AND SOMETIMES NO.

AND WE HAVE TO TOUGH IT THROUGH.

ONE OF THE THINGS THAT IS A GOOD OVERVIEW IS THE AARP FAMILY CAREGIVERS GUIDE IT GIVES YOU A LOT OF INFORMATION AND TALKS ABOUT THE RESOURCES.

AND YOU CAN REACH OUT AND UNDERSTAND WHAT IT MEANS TO BUILD A TEAM.

AND YOUR TEAM IS NOT ALWAYS YOUR FAMILY.

IT CAN BE A NUMBER OF DIVVIEDS WHO IN SOME CASES ARE PROFESSIONALS AND OTHER CASES THEY ARE YOUR NEIGHBORS.

AND WE WOULD GO OUT FOR A WALK MY DAD AND OUR NEIGHBORS EVERY TIME WOULD WALK UP AND DOWN THE STREET AND SAY HELLO AND ASK WHO IS THAT IS THAT YOUR DAD.

IT WAS A PLEASURE TO MEET HIM THAT INTERACTION WITH OTHER INDIVIDUALS WAS WONDERFUL BECAUSE THEY CAN FEEL ISOLATED AND YOU CAN SEE A DECLINE THAT TAKES PLACE WHEN PEOPLE FEEL ISOLATED.

IT IS A PEAR OF WORKING TOGETHER TO BUILD THAT TEAM AND GET THE RESOURCES IN PLACE.

THROUGH PEOPLE.

>> AMANDA, ANTHONY MENTIONED THE TEAM TELL ME THE DIFFERENCE OF ME TAKING CARE OF SOMEONE IN HOUSE VERSUS A NURSING HOME WHERE PEOPLE ARE THERE?

>> IT IS A BIG DIFFERENCE.

THE PEOPLE AT THE NURSING HOME ARE PAID TO DO THE JOB.

AND YOU AS THE CAREGIVER AT HOME ARE NOT PAID TO DO THAT JOB.

YOU ARE DOING IT WILLINGLY, WHETHER YOU'VE BEEN THRUSTED INTO THAT.

OFTENTIMES THERE'S IF YOU ARE ON MEDICAID, OFTENTIMES YOU WILL BE IN A MEDICAID BED SO THAT IS PAID FOR.

AT HOME YOU ARE HAVING TO PAY FOR A LOT OF THE RESOURCES SUCH AS INCOULDN'T ANYONES SUPPLIES.

COMMISSIONER TALKED ABOUT PEELS.

IF YOU DON'T GET HOME DELIVERED MEALS YOU ARE HAVING TO PAY FOR THE MEALS.

IF THEY HAVE POOR NUTRITION YOU ARE HAVING TO BUY NUTRITIONAL SUPPLEMENTS AND THOSE ARE EXPENSIVE.

THERE IS A COST IN CARING FOR YOUR LOVED ONE AT HOME.

>> AREN'T THERE VOUCHERS OR SOME OTHER PROGRAMS AVAILABLE TO PROVIDE FOR THESE THINGS?

ARE THEY STILL AVAILABLE?

U YES, THEY ARE.

SO WE HAVE A VOUCHER PROGRAM THROUGH THE NATIONAL FAMILY CAREGIVER PROGRAM THAT CAN HELP THE CAREGIVER PURCHASE THOSE INCOULDN'TENT SUPPLIES.

GLOVES, WIVES WE DO BATHROOM EQUIPMENT THAT IS NOT COVERED BY MEDICARE AND MEDICAID AND NUTRITIONAL SUPPLEMENTS BUT IT'S TAILORED TO WHAT THE INDIVIDUAL NEEDS.

PEOPLE WILL ASK ME WHAT CAN I GET AND MY QUESTION IS WHAT ARE YOU PURCHASING?

OFTEN BE MY NEXT QUESTION BECAUSE WE NEED TO GET WHAT THEY ARE PURCHASING IF IT WILL ALLOW US TO DO SO.

>> AND THE PROGRAMS ARE WONDERFUL, THEY ARE WONDERFUL.

I ALWAYS WANTED TO BRING REALITY BECAUSE A LOT OF PEOPLE IN THE PUBLIC ARE GOING TO BE LISTENING TO THIS.

AND I WANT THEM TO TAKE ADVANTAGE OF THESE PROGRAMS.

BUT THEY ALSO NEED TO UNDERSTAND THAT THERE ARE LIMITATIONS.

IT WON'T TAKE CARE OF EVERYTHING.

IT'S VERY IMPORTANT FOR THEM TO KNOW AND UNDERSTAND THAT.

AND THAT BRINGS ME TO THE POINT THAT I REALLY WANT TO MAKE.

WE NEED MORE RESOURCES FOR THESE PROGRAMS AND SERVICES TO HELP SUPPORT CAREGIVERS TO SUPPORT THEM MORE THAN WHAT WE'RE SUPPORTING THEM NOW.

I WILL SAY, TOO, ONE OF THE PROGRAMS THAT TEAM KENTUCKY HAS DONE IN RECOGNIZING WE NEEDED MORE RESOURCES WE HAVE LAUNCHED PACE, PROGRAM FOR ALL INCLUSIVE CARE FOR THE ELDERLY.

IT IS A PHENOMENAL WRAP AROUND SERVICE AND ALLOWS FOR RESPITE ENSURING THAT THE INDIVIDUAL IS TAKEN CARE OF IN THEIR COMMUNITY AND GET TO STAY IN THEIR HOME.

>> I WANT TO TALK ABOUT GRIEVING IN A MINUTE.

BUT FIRST, WE'VE TALKED A LOT THROUGHOUT THIS PROGRAM AND WE WANTED TO END WITH THE FAMILY FOR WHOM THIS DISCUSSION IS THEIR DAILY REALITY.

A WOMAN BECAME HER FATHER'S FULL-TIME CAREGIVER OVER A YEAR AGO DUE TO HIS DEMENTIA.

LAURA ROGERS SPENT TIME WITH THEM AT HOME.

LET'S HEAR THIS.

>> .

>> GET YOUR MEDICINE AND BREAKFAST OKAY.

>> WHEN YOU HAVE SOMEBODY IN THE STATE THAT MY DAD IS IN IT'S 24 HOURS A DAY, SEVEN DAYS A WEEK.

>> MELISSA AND HER PARTNER JEREMY ARE FULL-TIME CAREGIVERS FOR HER 77-YEAR-OLD FATHER DON.

>> WE GET HIM UP AND SHOWERED DOWN AND CLEANED UP.

>> THE REST OF THE DAY IS CENTERED AROUND DON'T CARE INCLUDING MEALS.

MEDICATION AND HYGIENE.

>> YOU CAN'T RUN TO THE GROCERY STORE UNLESS I HAVE SOMEBODY WATCHING HIM.

YOU CAN'T MEET FRIENDS YOUR LIFE IS STOPPED.

>> DON HAS ADVANCED DEMENTIA AND NO LONGER RECOGNIZED HER AS HIS DAUGHTER.

>> I'VE BECOME A MOTHER TO MY FATHER.

>> SHE IS A MOTHER TO A 13-YEAR-OLD DAUGHTER.

>> I GO TO SCHOOL AND HAVE HOMEWORK.

>> AND HELPS HER PARENTS WITH THE GRANDFATHER'S CARE BUT MUCH OF IT FALLS ON JEREMY.

I WAS ABLE TO KEEP MY JOB AND WE OWN A SMALL TRANSPORTATION COMPANY, JEREMY CAME OFF THE ROAD, AND HE HAS STOPPED EVERYTHING TO HELP ME TAKE CARE OF MY DAD.

>> WHAT IS THE HARDEST PART ABOUT IT?

THERE'S NOTHING EASY ABOUT IT.

EVERY BIT OF IT IS 100% DEMANDING.

>> JEREMY AND MELISSA ARE MEMBERS OF THE SO-CALLED SANDWICH GENERATION CARING FOR BOTH AN AGING PARENT AND THEIR OWN CHILD.

>> WAKING UP AT NIGHT BECAUSE HE IS TRYING TO GET OUT OF BED AND YOU ARE SCARED HE IS GOING TO FALL.

SLEEPING THREE HOURS A NIGHT.

THE PHYSICAL AND MENTAL DEMAND BEING 24/7 TO BATHE HIM, FEED HIM, WASH HIM, MAKE SURE HE DOESN'T FALL.

>> THEY MADE MAJOR ADJUSTMENTS TO THEIR HOME INSTALLING A STAIR LIFT, WHEEL CARE RAMP AND DOORKNOB COVERS.

>> YOU CANNOT LET HIM GO TO THE BATHROOM BECAUSE HE MIGHT FALL AND RUMMAGE AROUND THE KITCHEN BECAUSE HE CAN PICK UP A KNIFE AND SLICE HIS HAND.

>> DON IS A VIETNAM VETERAN.

JEREMY WORKED TO SECURE V.A.

BENEFITS.

>> THERE ARE EXPENSES THERE THAT THE V.A.

DOES NOT COVER.

>> AND HE SAYS NAVIGATING THE HEALTHCARE SYSTEM HAS BEEN A CHALLENGE.

>> YOU BECOME A LEGAL INVESTIGATOR TO MIND OUT WHAT TO DO NEXT.

OR YOU ARE CALLING MEDICAID OR MEDICARE.

YOU CAN'T DO THAT WITHOUT A POWER OF ATTORNEY BECAUSE THEY CAN'T ANSWER FOR THEMSELVES.

>> AND THEY WISH THERE WERE MORE RESOURCES FOR DEMENTIA AND ALZHEIMER'S PATIENTS.

>> I WANT PEOPLE TO KNOW THEY ARE NOT ALONE.

>> AND THEIR LIFESTYLE THEY ARE GRATEFUL THEY HAVE ABLE TO GIVE DON QUALITY OF LIFE IN HIS TWILIGHT YEARS.

FOR KET, I'M LAURA ROGERS.

>> MARGARET, TELL ME, THERE IS FROM YOUR EXPERIENCE TAKING CARE OF YOUR FATHER, THERE IS A SWITCH IN THE RELATIONSHIP.

BETWEEN YES, THAT'S YOUR PARENT AND YOU ARE THEIR CHILD BUT SUDDENLY THE ROLES ARE DIFFERENT.

THEY STILL MAYBE YOUR PARENT.

HOW DOES THAT AFFECT YOU?

YOUR MENTAL APPROACH TO THINGS?

>> GOOD QUESTION.

IT DID AFFECT ME.

AND I WAS THE DAUGHTER I WAS THE FEMALE.

AND TAKING CARE OF MY DAD, A MALE.

AND FOR A PERIOD OF TIME AND HE HAD DEMENTIA, WE DISCOVERED AFTER HE WAS WONDERING LOOKING AROUND FOR MY DECEASED MOTHER.

I BROUGHT HIM TO MY HOUSE.

AND TABLES DID TURN.

I REALIZED HE NEEDS A BATH IT'S BEEN SEVERAL DAYS.

AND IT STRUCK ME THIS IS MY DAD.

THIS ISN'T MY SON, THIS ISN'T A STRANGER THIS IS MY DAD.

AND I THINK HE WAS PROBABLY AT THAT TIME HE DID NOT KNOW WHO I WAS.

HE WENT IN AND OUT MORE OUT THAN IN.

BUT I THINK HE WAS FEELING I WAS GETTING THE SENSE THAT HE WAS WITHDRAWING, TOO.

AND I WAS AFRAID HE WAS GOING TO GET COMBATIVE.

AT THAT POINT I HAD TO CALL IN OUTSIDE HELP.

BUT THE ROLES DO CHANGE.

AND I BEGAN TO REALIZE I HAD TO SET BOUNDARIES.

I HAD TO SAY NO, YOU ARE GOING TO BED NOW.

I HAD TO LEARN TO BE MORE FORCEFUL.

AND THIS IS AN INDIVIDUAL THAT I LOOKED UP TO AND ADMIRED AND WOULD NEVER CROSS A DAY IN MY LIFE.

BUT NOW, IT WAS ALMOST LIKE IT WAS A DIFFERENT PERSON.

SO IT'S HARD TO HANDLE.

I THINK THAT'S WHY WE NEED THE EDUCATION AND THE SUPPORT AND THE RESOURCES TO HELP US THROUGH THIS CHANGE.

BECAUSE WE ARE EXPERIENCING A ROLE WE HAVE NOT REVERSAL WE HAVE NOT GONE THROUGH BEFORE.

>> Bill: ANTHONY, IS THERE EVER ANY RESENTMENT AT THE PERSON WHOM YOU KNEW AND WHO IS NO LONGER THERE?

RESENTMENT THEY ARE NOT THAT PERSON ANYMORE?

>> I NEVER FELT RESENTMENT.

I ALWAYS I LOOKED AT THEM AT THEIR PEAK THAT IS WHO THAT IS.

WHEN I WAS A CHILD AND THEY TOOK CARE OF ME THERE WAS NO RESENTMENT.

AND I FELT HOW CAN I HAVE RESENTMENT WHEN EVERYTHING I AM, EVERYTHING THAT I'VE ACHIEVED IS REALLY BECAUSE OF TESTIMONY.

SO -- THEM.

THEY ARE HAVING A TOUGH TIME.

AND RIGHT NOW, IT'S MAYBE THE TOUGHEST TIME BUT I'M TOUGH ENOUGH TOO I WILL SUPPORT THEM AND BE THERE TO DO WHATEVER I HAVE TO.

>> BARBARA WHEN YOUR WORLD IS UPENDED BECAUSE YOU ARE IN -- WHETHER YOU CHOSE OR THRUST UPON YOU -- DO PEOPLE SOMETIMES SAY YOU KNOW I AM A LITTLE RESENTFUL OF THIS AND IS THAT A NORMAL RESPONSE?

>> SO, FOR ME I WASN'T RESENTFUL.

I LEARNED LATER AFTER I GOT MORE KNOWLEDGE AND INFORMATION THAT I WAS GRIEVING QUITE SIGNIFICANTLY THE LOSS OF MY MOTHER BECAUSE MY MOTHER AS I SAID, HAD DEMENTIA, BRAIN DAMAGE CAUSED THAT.

AND BUT I DO BELIEVE IF YOU KNOW AND UNDERSTAND GRIEF, RIGHT, THAT IT DOES COME WITH SOMETIMES RESENTMENT, ANGER, PAIN AND DISCOMFORT AND ANXIETY AND DEPRESSION AND ALL OF THOSE THINGS COME ALONG WITH IT.

WHILE YOU ARE CARING FOR YOUR LOVED ONE YOU MAY EXPERIENCE THOSE THINGS BUT MAY NOT UNDERSTAND WHY YOU ARE FEELING THAT WAY.

I HAVE HAD CAREGIVERS SAY WHY AM I BREAKING DOWN AND CRYING?

WHY AM I CRYING?

I LOVE TAKING CARE OF MY MOM?

WHERE ARE THE TEARS FOR?

AND OFTEN IT'S BECAUSE THEY ARE GRIEVING.

THEY ARE GRIEVING THE LOSS.

IT'S DEFINITELY PART OF SELF CARE.

>> THERE WAS A POINT MADE WHICH WE JUST SAW ABOUT THE LEGAL ASPECTS OF THINGS.

DOES KIP TA PROVIDE SUPPORT.

>> WE CONTRACT WITH THE LEGAL AID SOCIETY TO HELP PEOPLE GUIDE THEM TO IF THEY NEED TO GET THEIR POWER OF ATTORNEYS, LIVING WILLS THOSE THINGS IN PLACE.

A LOT OF TIMES WHEN PEOPLE ARE THRUSTED INTO CAREGIVING THEY DON'T HAVE ANY OF THE LEGAL DOCUMENTS PREPARED, READY, THEY HAVE NOTHING.

AND THEY NEED TO KNOW WHERE TO GO.

I TALKED TO SOMEBODY ABOUT THAT THE OTHER DAY.

WE WORK WITH THE LEGAL AID SOCIETY AND WE ALSO WORK WITH TRAGER, LOUISVILLE INSTITUTE THEY HAVE A LAW CLINIC.

AND SOME PEOPLE CAN'T AFFORD ELDERCARE LAWYER AND SOME PEOPLE CAN.

IT DEPENDS ON YOUR SITUATION WHERE YOU WOULD TURN TO THAT OUT WE HAVE RESOURCES FOR THAT.

>> A QUESTION FOR ALL OF YOU.

AS YOU LOOK BACK... WHAT LESSONS HAVE YOU IMPARTED TO YOUR CHILDREN ABOUT BEING A CAREGIVER FOR YOU?

THERE'S THE JOKE THEY ARE THE ONES WHO DECIDE WHAT NURSING HOME YOU ARE GOING TO GO TO.

I WANT A BRIEF ANSWER.

>> START INVESTIGATING AS EARLY AS POSSIBLE.

I THINK THAT IS THE MAIN AT LEAST FOR MY WIFE AND I.

DON'T WAIT UNTIL THEY BECOME -- OR HAVE DEMENTIA OR GET TO THE POINT WHERE THEY ARE NOT CAPABLE OF SUPPORTING THEMSELVES.

MAKE AN EFFORT TO TRY AND START PUTTING SOMETHING TOGETHER IN PLACE EVEN IF YOU'RE IN YOUR LATE 30s EARLY 40s.

>> HAVE THAT CONVERSATION EARLY.

>> OBSERVATION W MY FATHER AND MY HUSBAND, MY SON WHO LIVES HERE, OBSERVED WHAT I WAS GOING THROUGH AND HIS WIFE.

I HAVE TO SAY.

LIKE A DAUGHTER TO ME.

SO INVOLVE THEM IN CAREGIVING IF YOU ARE A CAREGIVER FOR SOMEONE, SPOUSE, PARENT.

SO THAT THEY ACTUALLY SEE WHAT YOU GO THROUGH.

THE UPS, THE DOWNS, THE TEARS THE GRIEVING, THAT THAT'S I THINK GOING TO HELP US IN THE FUTURE WHEN IT'S OUR TURN.

>> DON'T DO IT IN A VACUUM.

EXPOSE WHAT YOU'RE DOING.

>> LET THEM KNOW WHAT IS GOING ON.

>> HAVE ADVANCED PLANNING DOCUMENT AND TRULY TALKING WITH YOUR CHILDREN EVEN AS TEENAGERS WHERE THESE DOCUMENTS ARE AND WHAT IS IMPORTANT TO YOU.

WHAT IS IMPORTANT TO MYSELF MAYBE DIFFERENT THAN WHAT IS IMPORTANT TO MY HUSBAND AND UNDERSTANDING THAT DIFFERENCE AND ALSO UNDERSTANDING IN THE EVENT THAT MOM OR DAD GETS SICK, WHERE ALL THE PASSWORDS ARE.

AND ALSO WHAT IS NEEDED TO ENSURE THAT WE CAN LIVE AS LONG AS POSSIBLE.

>> PRACTICAL THINGS.

>> I AGREE WITH WHAT MY COLLEAGUES AROUND THE TABLE HAVE SAID.

I HAD A BRIEF MOMENT.

A FEW YEARS AGO WHERE MY DAUGHTERS HELPED TO CARE FOR ME.

IT WASN'T LONG-TERM BUT IT WAS LONG ENOUGH.

AND HONESTLY, ONE OF MY HOPES AND WE DO HAVE THE CONVERSATION IS THAT THEY WILL NOT HAVE TO TAKE CARE OF ME LONG-TERM.

>> AMANDA LAST WORD?

>> LEADING BY EXAMPLE.

MY SON IS 14 YEARS OLD.

MY PARENTS ARE IN THEIR 70s.

HE IS GOING TO WATCH ME MAYBE HELP ME TAKE CARE OF MY PARENTS.

AND HE SEES THE WORK THAT I'M IN AND THE PROFESSION I AM IN.

HOPEFULLY HIM LEARNING WHAT TO DO WHERE TO GO BY US TAKING CARE OF MY PARENTS AND US TAKING CARE OF THE PEOPLE IN THE COMMUNITY.

>> WE WANT THEM 2-D AS WE DO NOT WHAT WE SAY.

DO THE RIGHT THING.

>> THANK YOU FOR BEING WITH US TONIGHT ON THE NEXT CHAPTER FORUM ON CAREGIVING FOR CAREGIVERS.

CAREGIVERS PROVIDE MANY THINGS TO THE CARED FOR INCLUDING A FINANCIAL SAVINGS, ATTENTION, AND THE COMFORT OF FAMENTTY WHICH LET'S FACE IT HOME COOKING DOES MAKE A PERSON FEEL GOOD.

CAREGIVERS FACE MANY STRESSES WHICH TOO OFTEN ARE IGNORED, UNRECOGNIZED OR NOT RESPECTED.

THESE STRESSES IF LEFT UNADDRESSED MAY LEAD TO SERIOUS MENTAL AND PHYSICAL ILLNESSES FOR THE CAREGIVER.

AS A FLIGHT ATTENDANTS SAY AT THE BEGINNING OF EACH FLIGHT PUT YOUR OXYGEN MASK ON FIRST BEFORE HELPING OTHERS YOU WILL BE A BETTER CAREGIVER FOR IT.

IF YOU WANT TO SEE THIS PROGRAM AGAIN OR CATCH OTHER SEGMENTS AND GET CONNECTED TO RESOURCES VISIT OUR WEBSITE KET.ORG/NEXT CHAPTER.

I'M Dr. WAYNE TUCKSON AND THANK YOU VERY MUCH FOR WATCHING.

[♪♪]