I WAS IN THE ARMY FROM 1956 TO 1976.
- WELL, WE MET ON A BLIND DATE MANY YEARS AGO,
LIKE 55 PLUS YEARS AGO.
AND HE DID KNOCK ME OFF MY FEET.
- I WAS DIAGNOSED JUNE OF 2003.
- THEY'RE A VERY, VERY CLOSE COUPLE
WHO AS DISEASE PROGRESSED,
DALE HAS TAKEN ON MORE AND MORE OF HIS CARE.
- SHE FEEDS ME, AND SHE COOKS FOR ME.
AND...
SHE...GETS ME WHERE I GOT TO GO.
AND...
SHE PUTS BACTINE ON MY SCRAPES,
AND...HELP ME BATHE... AND DRESS.
SHE HAS GOOD TASTE IN SHIRTS.
AND...
SHE...PUTS ME TO BED AT NIGHT.
- HE FALLS ALMOST EVERY DAY.
I DON'T THINK WE'VE HAD HARDLY MAYBE 2 OR 3 DAYS
THAT HE HASN'T FALLEN.
AND THEY'RE ARE ALWAYS NEAR FALLS.
HAD A TERRIBLE FALL IN THE GARAGE AND HIT HIS HEAD,
AND YOU KNOW, THE BLOOD WAS SPEWING,
AND WE ENDED UP GOING TO THE EMERGENCY ROOM.
- I'VE BEEN FORTUNATE.
THE ONLY THING I'VE BROKEN ARE A COUPLE OF FINGERS SO FAR.
TO SEE IT IS VERY SCARY,
AND YOU JUST KIND OF FEEL LIKE YOU'RE SITTING ON A--
I FEEL LIKE I'M SITTING ON A KEG OF DYNAMITE.
I THINK IT'S NORMAL TO HAVE NEGATIVE FEELINGS
WHEN YOU'RE DEALING WITH SOMETHING THAT'S VERY DIFFICULT.
I DON'T SCREAM BUT I TALK LOUDER.
ONE DAY I SAID TO HIM, "PLEASE DON'T DO THAT."
AND I DIDN'T THINK ABOUT IT, BUT HE SAID,
"YOU DIDN'T ASK ME THAT VERY NICE."
AND I SAID, "WELL, I SAID PLEASE."
HE SAID, "BUT YOU USED PLEASE LIKE A 4-LETTER WORD."
HA HA! I SAID, "I'M SORRY."
MANY CAREGIVERS WILL MENTION THAT THEY FEEL GUILTY
THAT THEY'RE NOT ABLE TO DO MORE
OR THAT THEY FEEL...
THEY FEEL GUILTY ABOUT THEIR NEGATIVE EMOTIONS,
AND THE FIRST QUESTION I ASK THEM IS
DO THEY THINK THAT THEY'RE PERFECT?
- I'M A HUMAN BEING, YOU KNOW, AND I DO MAKE MISTAKES.
AND GOOD LORD DOES FORGIVE ME, AND I HAVE TO FORGIVE MYSELF.
- AS PARKINSON'S DISEASE PROGRESSES,
THE RELATIONSHIP WITH THEIR SPOUSE CHANGES A LOT.
- WHEN YOU BECOME A CAREGIVER
FOR SOMEONE WITH PARKINSON'S DISEASE
OR A SERIOUS DISEASE,
THE NUMBER OF HATS YOU WEAR INCREASES
AND THE FREQUENCY WITH WHICH YOU WEAR THOSE HATS INCREASES.
- I WORRY ABOUT THE ROLE CHANGE THAT'S HAPPENED, YOU KNOW,
AND THAT THAT'S JUST REALLY VERY DIFFICULT.
- SO AN EXAMPLE OF THAT MAY BE THAT THE SPOUSE
IS NOW HAVING TO MANAGE AND TAKE CARE OF ALL FINANCES
OR MANAGE AND TAKE CARE OF YARD WORK OUTSIDE.
- MAKING DECISIONS BY MYSELF OR DISCUSSING IT WITH THE KIDS,
BECAUSE JERRY REALLY--WE'RE NOT DISCUSSING THOSE KINDS OF THINGS THAT MUCH ANYMORE.
CAREGIVERS OFTEN DESCRIBE A LOSS OF RELATIONSHIP,
AND WHAT THAT REALLY MEANS IS JUST THE SHARED INTIMACY
THEY'VE HAD OVER YEARS CAN BE REALLY IMPAIRED.
- THAT'S ONE OF THE HARDEST THINGS THAT WE'VE LOST,
UH, IS THE INTIMACY WE HAD.
BUT YOU KNOW, WE HUG, WE KISS, YOU KNOW.
WHEN I GO IN TO GET HIM UP IN THE MORNING,
I ALWAYS GIVE HIM A BIG KISS,
AND WE NEVER GOT TO BED WITHOUT KISSING EACH OTHER GOOD NIGHT.
- WHEN YOU HAVE PARKINSON'S DISEASE,
THERE'S SO MUCH DECLINE IN YOUR FACIAL EXPRESSION
AND YOUR GESTURES THAT IT'S OFTEN HARD TO TELL
WHAT A PERSON WITH PARKINSON'S DISEASE IS FEELING
UNLESS THEY REALLY TELL YOU.
- WITH THE MASKING THAT COMES ALONG WITH PARKINSON'S,
YOU CAN'T TELL WHETHER HE'S LAUGHING OR NOT.
- SO REALLY WORKING HARD TO COMMUNICATE
ABOUT WHAT'S GOING ON WITH THEM
AND ASKING THEIR SPOUSE ABOUT HOW THEY'RE DOING
IS A VERY HELPFUL THING.
- TALK TO EACH OTHER ABOUT IT.
I THINK YOU REALLY NEED TO TALK ABOUT SOME HARD THINGS.
- PEOPLE WHO FEEL LIKE THEY WANT TO BE HEROES
OR THAT IT'S THEIR DUTY TO BE 24/7 ALWAYS
TYPICALLY BURN OUT.
- I KNEW I COULDN'T DO IT ALL,
AND THAT'S ANOTHER REASON I GOT HELP EARLY ON,
AND I ALSO STARTED THINNING OUT MY OWN ACTIVITIES
BECAUSE I FIND WHEN I'M TRYING TO DO TOO MUCH
THAT I GET REALLY SHORT AND I GET REALLY TIRED.
- WELL, CARE GIVING IS HARD ON THE CAREGIVER.
AND THERE HAS TO BE...SOME... TIME OF RELIEF.
- ASSESSING FOR CAREGIVER STRAIN, IF WE WANT TO USE THAT WORD,
IS REALLY IMPORTANT FOR CLINICIANS TO DO,
AND IT'S NOT ALWAYS EASY TO TELL.
SOMETIMES IT'S OBVIOUS.
THEY'RE SO STRESSED, AND THEY ARE SO DEPLETED
THAT THEY CAN'T BEGIN TO HIDE IT.
- SHE WAS TALKING ABOUT SOMETHING,
AND I JUST BROKE DOWN IN TEARS.
AND, UH, SO YEAH, A COUPLE OF TIMES THAT'S HAPPENED IN THE OFFICE.
- OTHER TIMES IT'S NOT AS OBVIOUS,
EVEN IF YOU'RE SENSITIVE TO IT
BECAUSE THE NATURAL TENDENCY WHEN YOU'RE A SPOUSE,
A HEALTHY SPOUSE, IS TO FEEL THAT THE REAL FOCUS
SHOULD BE ON THE PERSON WITH THE ILLNESS.
- YOU DO TRY TO BE STRONG, THOUGH.
- IF CAREGIVERS SEEM LIKE THEY HAVE A LOT STRAIN,
I OFTEN WILL REFER THEM TO SOCIAL WORKERS,
TO PSYCHOLOGISTS OR OTHER MENTAL HEALTH PROVIDERS FOR SUPPORT.
- WE TRY TO TAILOR OUR INTERVENTIONS
TO MEET THE PERSON WHERE HE OR SHE IS.
AND SO ONE DAY WE MAY BE DOING NOTHING BUT SITTING DOWN AND LISTENING
AND DOING SUPPORTIVE COUNSELING, ENCOURAGING,
AND THE NEXT DAY WE MAY BE PROVIDING A LOT OF LINKAGE TO RESOURCES.
- THE PERSON WITH PARKINSON'S DISEASE
OFTEN FEELS LIKE ALL THE GIVING IS ONE DIRECTION,
AND IT'S SO HELPFUL WHEN THEY FEEL LIKE THEY CAN DO SOMETHING FOR THEIR SPOUSE
WHO'S DOING A MILLION DIFFERENT JOBS AND DOING A MILLION DIFFERENT THINGS.
AND ONE OF THE THINGS THEY CAN DO
IS TO JUST ACKNOWLEDGE HOW HARD IT IS FOR THEM.
- WATCHING MY WIFE WORK TO KEEP ME GOING...
IS HARD.
SHE'S BEEN WITH ME FOR 55 YEARS AND HAS BEEN THROUGH A LOT.
- AND THE SECOND THING IS TO ENCOURAGE THEM TO TAKE TIME FOR THEMSELF,
AND IF THAT MEANS SOMEBODY ELSE HAS TO COME STAY WITH THEM
WHERE THEIR SPOUSE DOES THAT, THAT'S SO VALIDATING.
[DOORBELL RINGS]
- WELL, HELLO THERE. HOW ARE YOU?
- HOW'S JERRY DOING TODAY? - HE'S DOING PRETTY GOOD.
- OK. - SO GOOD TO SEE YOU.
JERRY SAID HE DIDN'T REALLY WANT ANYBODY,
THAT HE DIDN'T NEED ANYBODY,
AND I SAID, "WELL, I DON'T KNOW THAT YOU DO, BUT I DO."
AND HE'S REALLY BEEN VERY OPEN TO THAT.
- IT'S BEEN VERY EASY FOR ME.
I'M NOT...SUPER SELF-CONSCIOUS WHEN I HAVE TO BE ASSISTED.
- SHE'S FREE TO DO MANY OF THE OTHER THINGS
THAT NEED TO BE DONE IN THEIR HOME.
- I'VE ALWAYS SHOPPED, MAJOR SHOPPING,
LIKE ONCE A MONTH OR SO.
WE USED TO GO GROCERY SHOPPING TOGETHER,
AND NOW I GO BY MYSELF.
MAINLY I GET PRODUCE AND FRESH VEGETABLES AND THINGS LIKE THAT.
WITH 2 OF US, THERE'S NOT THAT MUCH OF MAJOR SHOPPING ANYMORE.
- CAREGIVERS WHO ARE 24/7 TRULY NEED TIME AWAY.
- OH, I DON'T KNOW ABOUT THAT. I THINK I'M A LITTLE CRAZY.
- I HAVE A GROUP OF LADIES.
THEY GET TOGETHER ON MONDAY MORNINGS,
AND I JUST STARTED GOING BACK.
I TRY TO GO TO THAT GROUP ALMOST EVERY MONDAY,
BUT I CAN'T ALWAYS MAKE IT.
- RESPITE CARE SIMPLY MEANS TIME AWAY FROM THE DUTY THAT YOU HAVE.
- IT CAN OCCUR IN THE COMMUNITY
WHERE THE PATIENT WITH PARKINSON'S
GOES TO A PLACE WHERE THERE'S TRAINED PROFESSIONALS TO HELP CARE FOR THE PATIENT
OR THERE CAN BE PEOPLE THAT COME INTO THE HOME,
AND THE SPOUSE, THE CAREGIVER, CAN THEN LEAVE
AND DO THINGS THAT SHE FEELS SHE NEEDS TO ATTEND TO.
- I THINK OF IT AS THE TIME TO SORT OF FILL UP YOUR TANK
SO YOU CAN COME BACK AND BE RE-ENERGIZED TO DO THE JOB AT HAND.
- THERE'S RESPITE CARE FOR THE VA, THROUGH VA,
AND LIKE YOU CAN HAVE A WEEK.
I THINK. I'M NOT QUITE SURE, BUT...
I'M NOT QUITE-- I'M NOT READY TO GO THERE.
I DON'T THINK JERRY'S QUITE READY TO GO THERE EITHER, SO...
AND I'M HOPING I WON'T HAVE TO DO THAT, BUT I MAY.
- MANY PEOPLE HAVE MANY BUILT-IN SUPPORTS
EITHER THROUGH THEIR CHURCH OR THEIR FAMILY
OR JUST THEIR SOCIAL CIRCLE.
- YOUR FRIENDS AND LOVED ONES WANT TO HELP YOU,
AND THAT'S THEIR WAY OF SHARING, YOU KNOW,
THEIR WAY OF BEING A PART OF THE FRIENDSHIP, YOU KNOW?
AND WHEN YOU LET PEOPLE HELP YOU,
IT'S SUCH A BLESSING FOR THEM AND FOR YOU.
- I THINK THERE ARE ALSO SOME GREAT CAREGIVER SUPPORT GROUPS OUT THERE
FOR PARKINSON'S DISEASE.
- SHE HAS HER BIBLE STUDY GROUP THAT SHE MEETS WITH.
- WE BOTH HAVE A REALLY STRONG FAITH,
AND THAT'S JUST BEEN REALLY WONDERFUL.
I DON'T KNOW WHAT I WOULD DO IF I DIDN'T HAVE THAT.
- CARE GIVING IS JUST SIMPLY HARD
AND THAT AS A PROVIDER, A HEALTHCARE PROVIDER,
IT'S AS IMPORTANT TO CARE FOR THE CAREGIVER
AS IT IS FOR THE PERSON WITH PARKINSON'S DISEASE.
- WE NEED TO TELL CAREGIVERS THAT THEY'RE DOING A TREMENDOUS JOB
AND THEIR JOB IS OBVIOUSLY INCREDIBLY IMPORTANT
IN THAT THEY'RE A VALUABLE MEMBER OF THE CARE TEAM.
- MANY CAREGIVERS DESCRIBE A SILVER LINING OF CARE GIVING.
THEY TALK ABOUT MEETING PEOPLE THAT THEY WOULDN'T HAVE EVER MET BEFORE.
THEY TALK ABOUT A CLOSENESS OF RELATIONSHIP
BECAUSE THEY NEED EACH OTHER MORE.
- LIFE WAS NOT PERFECT AND LIFE DOES HAVE LOTS OF PAIN WITH IT.
BUT THERE'S A LOT OF GOOD THAT COMES OUT OF THOSE THINGS, YOU KNOW.
I'VE SEEN IT THROUGH MY LIFE OVER AND OVER AGAIN.
- SOME PEOPLE HAVE TALKED ABOUT THE PERSONAL GROWTH
THAT THEY THEMSELVES HAVE ACHIEVED BY DOING SOMETHING SO DIFFICULT
AND RECOGNIZING THAT NOT ONLY DID THEY DO IT,
BUT THEY DID IT PRETTY DARN WELL.