- I WAS IN THE MILITARY FROM 1965 TO 1967.
I WAS A COOK IN THE ARMY.
I GOT AN HONORABLE DISCHARGE.
AND I'M STILL PROUD OF IT.
- NOEL HAS HAD PARKINSON'S ALMOST 12 YEARS.
HE WAS DIAGNOSED WHEN HE WAS 60 YEARS OLD.
WHEN WE WERE FIRST MARRIED, WE DID EVERYTHING TOGETHER.
WE PAID THE BILLS TOGETHER.
IT WAS A TRADITIONAL TYPE OF--YOU GO TO WORK,
I'LL STAY HOME, RAISE THE KIDS,
AND YOU BRING HOME YOUR PAYCHECK,
AND WE'LL DO THINGS TOGETHER.
BUT AFTER THE PARKINSON'S, I REMEMBER VERY CLEARLY--
BEFORE HE WAS EVEN DIAGNOSED--
THAT I ASKED HIM TO DO SOMETHING WITH THE CHECKBOOK,
AND HE JUST STARED AT ME AND HE SAID "I CAN'T."
SO OUR ROLES DID CHANGE.
- WHEN WE SAY "ADVANCED PARKINSON'S DISEASE",
WE USUALLY MEAN THE LATER STAGES OF THE DISEASE
WHERE THE MEDICATION EFFECTS ARE NOT AS CONSISTENT.
AND A LOT OF THE NON-MOTOR PROBLEMS OF PARKINSON'S DISEASE
COME TO THE FOREFRONT
AND ARE USUALLY THE BIGGEST CAUSES OF LOSS OF QUALITY OF LIFE.
THEY CAN BE ANYTHING FROM DEMENTIA TO DEPRESSION,
SEVERE ANXIETY, WHAT WE CALL AUTONOMIC NERVOUS SYSTEM PROBLEMS,
LIKE SEVERE CONSTIPATION, URINARY PROBLEMS,
EVEN INCONTINENCE,
LIGHTHEADEDNESS TO THE POINT OF COMING CLOSE OR EVEN FAINTING.
- THIS WHOLE LAST YEAR HAS BEEN RATHER HARD,
BECAUSE HE TOOK A BAD FALL WHEN WE FIRST MOVED INTO THIS PLACE A YEAR AGO.
HE WAS REALLY HAVING TROUBLE GETTING AROUND.
HE NEEDED HELP TURNING, GETTING UP AND DOWN FROM THE TABLE.
IT WAS GETTING TO THE POINT THAT IF HE HADN'T HAD THE HEART ATTACK,
I MIGHT HAVE HAD TO SEND HIM TO A NURSING FACILITY ANYWAY SOON.
- WHAT WE'RE TRYING TO DO WITH THE PALLIATIVE CARE CLINIC FOR OUR PARKINSON'S PATIENTS
IS TO REMAIN AN IMPORTANT FACTOR IN GOING FORWARD IN EASING THEIR SUFFERING
AND IMPROVING THEIR QUALITY OF LIFE,
BECAUSE IN THE ADVANCED STAGES OF THE DISEASE,
OUR USUAL MEDICAL TREATMENTS DON'T ALWAYS PROVIDE THAT.
- SO IT'S A TRANSITION OF CARE FROM ACTIVE, CURATIVE CARE
TO CARE FOCUSED ON COMFORT.
THEIR CURRENT MEDICAL REGIMEN CONTINUES,
AND THEY ALSO RECEIVE CHAPLAIN SUPPORT
AND SPIRITUAL SUPPORT, EMOTIONAL SUPPORT,
SOCIAL WORK SUPPORT.
- YOU KNOW, NO MATTER HOW MUCH TIME YOU HAVE LEFT,
HOW IS THAT TIME GOING TO BE THE BEST YOU CAN MAKE IT?
AND HOW CAN WE HELP YOU IMPROVE YOUR QUALITY OF LIFE?
WHAT DOES THAT MEAN FOR YOU?
- SO A SPOUSE CAN BE A CORNERSTONE IN ADMINISTERING PALLIATIVE CARE,
BECAUSE THEY ARE WITH THE PATIENT, USUALLY, 24 HOURS A DAY.
AND THEY ARE THE ONES THAT ALSO KNOW THE PATIENT THE BEST.
- NOEL HAS BEEN IN THE NURSING HOME SINCE ABOUT APRIL 19th,
AND THE FIRST MONTH WAS VERY HARD.
HE COULDN'T MOVE. HE COULDN'T RESPOND.
I CRIED A LOT.
THEN HE STARTED HAVING THERAPY, AND THINGS STARTED TO GET BETTER,
AND I NOTICED MARKED IMPROVEMENT,
AND HE WAS STARTING TO ENJOY HIMSELF.
ONE DAY I CAME IN,
AND HE WAS IN HIS WHEELCHAIR IN THE DINING ROOM PLAYING DOMINOES,
AND I HAD NEVER SEEN HIM PLAY DOMINOES IN ALMOST 29 YEARS OF MARRIAGE.
WHEN I GO SEE HIM, I EITHER DO PERSONAL GROOMING THINGS,
I READ THE BIBLE TO HIM, WE TALK.
I WHEEL HIM AROUND OUT TO THE PATIO, WE GET FRESH AIR.
I WALK HIM AROUND SO HE CAN SEE HIS SURROUNDINGS.
WE PRAY A LOT. WE SING A LOT TOGETHER.
WHEN HE WAS FIRST THERE, HE COULDN'T TALK,
BUT HE COULD SING.
SO WE WOULD SING.
- SO, IN OUR PALLIATIVE CARE CLINIC,
WE TRY TO, FIRST OF ALL, MAKE THE VISITS A LOT LONGER
AS OPPOSED TO THE USUAL 30- OR 60-MINUTE FOLLOW-UP VISITS.
WE THEN CONVERT IT TO A FULL 2 HOURS,
AND DURING THAT TIME, WE HAVE NURSES, A CHAPLAIN,
A SOCIAL WORKER, IF AVAILABLE, AND THE NEUROLOGIST
TO REALLY GO OVER MANY DIFFERENT ASPECTS OF THE DISEASE AS IT GETS TO THAT POINT.
- IN TERMS OF MANAGING PEOPLE WITH PARKINSON'S DISEASE AND PALLIATIVE CARE,
IT TAKES AN INTERDISCIPLINARY TEAM.
- ALL THE TIMES, THE FOCUS WILL BE THE CAREGIVER,
ESPECIALLY WHEN YOU HAVE END-STAGE PARKINSON'S.
AND WHAT CAN WE DO TO SUPPORT THE CAREGIVER?
- IT WAS DIFFICULT AT FIRST FOR ME.
HE WAS NOT REALLY COGNIZANT, AND HE WAS VERY, VERY SICK.
HE SPENT A LOT OF TIME SLEEPING.
SO I DON'T KNOW HOW IT WAS FOR HIM,
BUT FOR ME IT WAS VERY LONELY.
- OUR MANDATE, OUR MISSION IN THE VA
IS TO PROVIDE SPIRITUAL CARE TO VETERANS AND THEIR FAMILIES.
THIS IS A GAME BUT ALSO A WAY TO HELP CLARIFY VALUES.
IT'S CALLED THE "GO WISH" GAME.
AND IT HAS A WHOLE BUNCH OF DIFFERENT TOPICS ON IT,
AND THEY'RE TOPICS WHICH CAN REALLY BE THOUGHT-PROVOKING.
ALSO, ON PART OF WHAT'S CALLED THE INTERDISCIPLINARY TEAM,
WHICH IS WHAT IS THE PARKINSON'S SUPPORT CLINIC.
AND I'M PART OF THE TEAM THERE,
AND I WORK WITH THE SOCIAL WORKER
AND THE NURSES AND DOCTORS TO PROVIDE A DIFFERENT ANGLE OF CARE.
- WHEN SOMEONE HAS PARKINSON'S AS LONG AS MY HUSBAND HAS HAD IT,
YOU'RE READY FOR PALLIATIVE CARE BY THE TIME YOU NEED IT.
IT'S NOT A SCARY THING. IT'S NECESSARY.
IN FACT, I LIKED IT BECAUSE THE TEAM WAS THERE FOR ME.
THEY CAME TO ME. I COULD ASK ALL THE QUESTIONS I WANT.
I WASN'T ON A TIME LIMIT. THEY SPENT TIME WITH ME.
THEY WERE CONCERNED ABOUT ME AS A CAREGIVER
AND ABOUT HIM AS A PATIENT.
- BRINGING UP END OF LIFE ISSUES
WITH A PATIENT AND/OR A CAREGIVER
IS VERY DIFFICULT.
IT REQUIRES...
IT REQUIRES YOU TO BE SENSITIVE TO THE NEEDS OF EVERYBODY INVOLVED
AND TRY TO BRING UP THIS DIFFICULT ISSUE
AS PLEASANTLY AND COMFORTABLY AS POSSIBLE.
- CHAPLAINS HELP PEOPLE THINK ABOUT AND DEAL WITH END OF LIFE ISSUES
BY BEING WILLING TO GO INTO DIFFICULT CONVERSATIONS.
OFTEN, I WILL BRING UP THE HARD TOPICS.
WHEN I WORK WITH VETERANS WHO ARE EITHER FACING AN END OF LIFE DIAGNOSIS
OR JUST EVEN A LONG-TERM ILLNESS,
THERE IS OFTEN A LOT OF LOSS,
AND IT'S OFTEN A PROGRESSIVE SET OF LOSSES.
WHAT CAUSES SPIRITUAL DISTRESS IS NOT FACING DIFFICULTIES
OR NOT FACING DIAGNOSES OR CHANGES OR LOSS.
AND THE AVOIDANCE OF THESE PIECES OF LIFE CAN BECOME VERY PAINFUL.
- I HAD TO ASK NOEL WHAT HE WANTED FOR END OF LIFE ISSUES
AND IF SOMETHING HAPPENED, WOULD HE WANT TO BE RESUSCITATED.
AND WE TALKED A LOT ABOUT IT.
AND AT FIRST, A COUPLE OF YEARS AGO, HE WANTED TO BE RESUSCITATED--HA HA!
"KEEP ME ALIVE AT ALL COST."
AND NOW HE'S BEEN SUFFERING SO MUCH,
HE'S SORT OF RESIGNED TO, "IF YOU NEED TO RESUSCITATE ME, DON'T RESUSCITATE ME.
JUST LET NATURE TAKE ITS COURSE."
- AN ADVANCED DIRECTIVE ALLOWS A PERSON TO EXPRESS THEIR WISHES
ABOUT HOW THEY WANT THEIR CARE TO PROGRESS
IF THEY ARE NOT ABLE TO SPEAK FOR THEMSELVES ANYMORE.
- THE LARGE PERCENTAGE OF PATIENTS IN ADVANCED PARKINSON'S DISEASE
WILL HAVE COGNITIVE IMPAIRMENT THAT MAKE THOSE DECISIONS VERY DIFFICULT.
SO WHEN WE START NOTICING THAT THERE'S REALLY ANY HINT OF COGNITIVE IMPAIRMENT,
WE START THINKING ABOUT HAVING THOSE DISCUSSIONS,
ABOUT STARTING TO PLAN FOR THE FUTURE WHEN YOU DO HAVE MORE MENTAL CAPACITY INTACT.
- IT'S ABSOLUTELY IMPORTANT TO HAVE YOUR PREFERENCES DOWN ON PAPER.
- ONCE IT'S WRITTEN AND YOU HAVE IT DOCUMENTED,
WE'RE JUST FOLLOWING YOUR WISHES.
EVEN THOUGH YOU CANNOT TELL US, WE ARE FOLLOWING YOUR WISHES
AS IF YOU'RE TELLING US WHAT YOU'D WANT US TO DO.
- IT'S GOOD TO BE PREPARED IN ADVANCE.
I DIDN'T THINK ABOUT IT IN THE EARLY YEARS.
WHO THINKS ABOUT LAST WILL AND TESTAMENT TYPE OF THING?
WHO THINKS ABOUT ADVANCED DIRECTIVES?
HE WAS ALMOST NORMAL IN THE EARLY YEARS.
SO I HAVE POWER OF ATTORNEY FOR FINANCES AND MEDICAL.
I RUN EVERYTHING. I DO EVERYTHING FOR HIM.
IN THE BEGINNING, WHEN WE FIRST STARTED TALKING ABOUT THIS,
HE SAYS, "WELL, I'M GONNA LEAVE THE DECISION UP TO YOU."
I SAID, "NO, THIS IS YOUR LIFE.
"WE SHARE IT TOGETHER, BUT IT'S YOUR LIFE.
YOU HAVE TO MAKE THE FINAL DECISION WHAT YOU WANT."
- SHE WILL MAKE DECISIONS WITHOUT REGRET
BECAUSE WE ALREADY COVERED AND TALKED ABOUT THAT --
WITHOUT GUILT OR SHAME.
YOU SEE WE'RE CHRISTIANS, AND WE'RE BELIEVING THAT
WE'RE GOING TO SEE EACH OTHER AGAIN PRETTY SOON.
I'M NOT HAPPY ABOUT WHAT'S GOING ON,
BUT I'M HAPPY ABOUT THE WAY WE ARE APPROACHING LIFE.