>> MY MOTHER WAS VERY METICULOUS. SHE COLORED HER HAIR FORM AGE 16. SHE WAS A MARILYN MONROE BLONDE; A VERY, VERY SWEET LADY AND SHE WAS A DIFFERENT PERSON. SHE WAS HAGGARD LOOKING, HER HAIR WASN'T DONE, THE HOUSE WAS DIRTY. I WAS LIKE WHOA, WHAT DID I JUST WALK IN TO? SHE CAME TO VISIT ME IN NEW YORK AND WE WERE WALKING DOWN THE STREET AND SHE WENT TO THE WRONG DOOR WAY AND I MEAN I HAD LIVED THERE 10 YEARS AT THAT POINT AND SHE DEFINITELY KNEW WHERE MY APARTMENT WAS. SHE WOULD LEAVE TO GO TO WORK, ABOUT FIFTY MILES AND EVERY DAY SHE WOULD CALL AND SAY CALL ME BACK IN A FEW MINUTES AND WHAT WAS HAPPENING SHE WAS GETTING SLEEPY AND WOULD PULL OVER AND TAKE A NAP. >> HE WOULD COME INTO THE ROOM AND SAY, WHERE IS MY PENCIL? HE'S AN ACCOUNTANT, I WOULD GO, IT'S IN YOUR OFFICE. I WAS LIKE WHAT ARE YOU TALKING ABOUT? FIVE MINUTES LATER, WHERE IS MY PENCIL? IN MY MOM'S CASE, THIS PERSON TALKED TO HER ON THE TELEVISION AND SHE WAS ABLE TO TALK WITH THIS PERSON BACK ON THE TV. FIRST TIME, YOU WOULD THINK SHE'S JUST JOKING BUT SHE WAS SINCERE. >> WHEN YOU CALL HERE ON THE PHONE SHE WOULD BE GOOD FOR THE FIRST 5 OR 10 MINUTES AND THEN ALL OF A SUDDEN THE SWITCH WOULD HIT AND IT WOULD BE THE SAME CONVERSATION AGAIN. WE STARTED FIGHTING A LITTLE BIT AND HE WOULD JUST SAY WEIRD THINGS OR DO WEIRD THINGS. HIS MEMORY WAS FINE AND I WENT THROUGH THE CHECK LIST OF THINGS ON-LINE AND HE PASSED WITH FLYING COLORS ACTUALLY. HE REMEMBERED PEOPLE'S NAMES, HE WASN'T LOSING HIS KEYS, HE WASN'T GETTING LOST. IT WAS REALLY MORE OF HIS PERSONALITY WAS CHANGING A LITTLE BIT. >> WE HAVE PEOPLE WHO ARE STRUGGLING ALL OVER THE PLACE AND IT'S TIME TO QUIT ACTING LIKE THIS IS A RARE DISEASE, THAT ONLY THE ODD PERSON GETS UPSET AND ONLY A FEW FAMILIES ARE GIVING UP THEIR LIVES, OH THIS IS EVERYWHERE. >> WE SAT DOWN WITH THE NEUROPSYCHOLOGIST AND HE TALKED TO US ABOUT WHAT THE TESTING WOULD BE. HE DID SOME INITIAL TESTING WITH ARNIE AND QUITE FRANKLY MY STOMACH DROPPED TO MY FEET AND I WANTED TO THROW UP, BECAUSE SOME OF THE INITIAL TESTING SHOWED THINGS I HAD NO IDEA THAT HE COULDN'T DO. >> THEY ASKED HER TO DRAW A CLOCK AND WHEN SHE DREW THE CLOCK YOU KNOW COULDN'T QUITE GET THE HANDS RIGHT. WE HAD TRUSTED HER WITH EVERYTHING YOU KNOW PAY THE BILLS, WHATEVER WE NEEDED DONE YOU KNOW SHE HAD ALWAYS DONE. AND SO NOW IF YOU CAN'T DO SOMETHING AS SIMPLE AS THAT YOU KNOW THAT MEANS WE REALLY GOT TO HELP OUT. >> IT WAS A LONG DRAWN OUT TIRESOME TEST. YES, CAUSE SOME OF IT I GOT A LITTLE UPSET BECAUSE I GUESS IT'S A LITTLE CONFUSING, A LITTLE HARD FOR ME TO DO. I FELT LIKE I SHOULD BE ABLE TO DO IT, BUT I WAS HAVING DIFFICULTY DOING IT. >> IT WAS A COUPLE OF YEARS BEFORE WE GOT A DIAGNOSIS AND AT FIRST IT WAS YOU KNOW SOME KIND OF ALZHEIMER'S AND THEN AS THEY CONTINUED TO WORK WITH HER THEY SAID THAT SHE HAS FRONTOTEMPORAL DEMENTIA, FTD. >> DEMTIA IS SORT OF THE UMBRELLA TERM THAT MEANS COGNITIVE IMPAIRMENT. THERE ARE MANY, MANY, MANY DIFFERENT DISEASES THAT CAN CAUSE DEMENTIA. ALZHEIMER'S DISEASE IS THE MOST COMMON, MAKING UP ABOUT 65 TO 70 PERCENT OF ALL THE DEMENTIAS. ONE OF THE FIRST STEPS I ALWAYS TELL PEOPLE IS TO GO TO AN ELDER LAW ATTORNEY FIRST OFF TO MAKE SURE YOUR FINANCES ARE IN GOOD SHAPE. JOIN A SUPPORT GROUP. THE INFORMATION YOU GET FROM A SUPPORT GROUP IS INVALUABLE. THE MORE YOU KNOW ABOUT THIS DISEASE THE EASIER IT IS TO COPE WITH IT. >> WHEN TED STATED HAVING SYMPTOMS I READ AND STUDIED EVERYTHING I COULD GET A HOLD OF AND LEARNED IT'S A BRAIN DISEASE. AND JUST LIKE YOU KNOW AN ORGAN STOPS WORKING THE BRAIN STOPS WORKING. THAT HELPED. CURRENTLY WE HAVE 72 DEGREES. DONALD AS EVERYBODY KNOWS WAS DIAGNOSED WITH EARLY ONSET ALZHEIMER'S AT AGE 39, AM I RIGHT? 39 IS WHEN HE FIRST STATED HAVING SYMPTOMS AND IT TOOK TWO YEARS, WHICH IS A NORMAL TIMEFRAME TO GET A DIAGNOSIS OF EARLY ONSET ALZHEIMER'S AND SO HE WAS DIAGNOSED AT 41. I DON'T THINK THEY WANT TO HEAR YOUR THEME SONG DO THEY DON? WHY NOT? [LAUGHTER] >> WELL, WE'LL JUST PLAY A LITTLE BIT ON IT. >> I'M SUPPOSED TO MEET SOMEONE FOR LUNCH TODAY, BUT I CAN'T REMEMBER WHERE. >> AT WHAT POINT DURING THIS PROCESS IN THE BEGINNING DID YOU FINALLY END UP REACHING OUT TO THE ALZHEIMER ASSOCIATION OR DISCOVERING IT. >> IT DOESN'T HAVE TO BE ALZHEIMER, IT IS ANY KIND OF DEMENTIA. OUR HOPE IS THAT DOCTORS WILL IMMEDIATELY SEND YOU TO THE ALZHEIMER ASSOCIATION. THAT DOES NOT HAPPEN. IT DIDN'T HAPPEN TO US IN OUR SITUATION. IN OUR SITUATION, WE WERE TOLD TO GO HOME, GET YOUR AFFAIRS IN ORDER, THIS WAS EARLY ONSET AND IT WILL GO QUICKLY. THE FIRST THING I HAD TO DO WAS EDUCATE MYSELF. MEETING OTHER CAREGIVERS, AND BEING A PART OF A SUPPORT GROUP, AND GOING TO THE ALZHEIMER ASSOCIATION EDUCATION PROGRAM HAVE TRULY SAVED MY LIFE BECAUSE WITHOUT THEM, I WOULD HAVE BEEN LOST. >> SO ALZ.ORG, DONALD AND CHRISTY, WE LOVE YOU GUYS. >> LOVE YOU TOO. NEIL SO THIS IS ALL YOU DO ALL NIGHT IS JUST WALK, WALK, WALK? YEAH, DO YOU REMEMBER WHICH ON YOUR ROOM IS? NO KEEP WALKING, UH UH TAKE A RIGHT AND WE'RE BACK IN YOUR ROOM. >> MOM IS JUST REALLY INTERESTING TO WATCH BECAUSE EVERY DAY IS A DIFFERENT DAY. AND YOU LOOK AT HER SOME DAYS SHE JUST REALLY UP AND ON AND READY TO GO AND OTHER DAYS LIKE TODAY. SHE'S VERY SEDATE. SHE'S IN HER OWN WORLD. SOME DAYS SHE'S REALLY FAR BACK IN THE WORLD, OTHER DAYS YOU KNOW, SHE'S MAYBE 10 OR 12 YEARS AGO. SHE DEFINITELY CAN'T LIVE ON HER OWN, BUT THERE ARE DAYS YOU THINK SHE COULD BE IN A TRUE ASSISTED LIVING, BUT YOU KNOW SHE CAN'T. >> THAT'S MY UNCLE ED TOBIN, AND THAT'S WHAT DO YOU CALL IT? >> THE WATER TOWER. >> IT'S A PRETTY SOBERING THING TO DO. AND, WHEN THE JUDGE LOOKS AT YOU AT THE END OF YOUR HEARING, AT YOU FULLY UNDERSTAND THAT YOU'RE RESPONSIBLE FOR YOUR MOTHER FOR THE REST OF YOUR LIFE. WHEN THE JUDGE SMACKED HIS GAVEL, EVERYTHING GOT DARK. THAT'S THE ANXIETY ATTACK AND YOU TAKE A BREATH. YOU HAVE TO TAKE A BREATH. EVERYTHING THAT YOUR RESPONSIBLE FOR, FOR THEIR CLOTHING, THEIR FOOD, THEIR HEALTH, THEIR DENTAL, THEIR EYESIGHT, EVERYTHING. THAT IS YOUR RESPONSIBILITY. YOU HAVE JUST ADDED ANOTHER PERSON INTO YOUR HOUSEHOLD. >> I WILL ONE OF THESE DAYS. >> OH YOU WILL? WHAT DO YOU THINK YOU WILL TELL ME? >> OH, I DON'T KNOW. >> WELL, THIS AIN'T A GOOD ONE. >> WELL, THE FAMILY DIDN'T BELIEVE ME AT FIRST. I STILL KIND OF THINK THEY'RE NOT A HUNDRED PERCENT SURE. LELIA WENT FROM A PERSON THAT WAS ALWAYS HAPPY, QUIET, HUMBLE, NOTHING TO SAY AND TO CUSSIN'. AT FIRST IT WAS FUNNY, BECAUSE NOBODY WAS USED TO HER CUSSIN' AND SHE DIDN'T KNOW HOW TO CUSS. BUT YOU KNOW THE HARDEST THING ABOUT IT IS THAT WHEN OTHER PEOPLE ARE INVOLVED THEY REALLY REMEMBER THE WAY YOU WERE. SO THEY EXPECT FOR YOU TO STILL BE ABLE TO DO THE SAME THINGS. OTHER PEOPLE THINK OH SHE'S FINE, SHE'S FINE. SHE REMEMBERS BETTER THAN ME. SO YOU GET THAT A LOT. I SAY HEY JUST LEAVE HER ALONE. WE BOUGHT A BMW OVER IN GERMANY >> A VOLVO OVER IN GERMANY. >> WE DID SOME FUN STUFF. >> YEAH, WE DID. >> NICE ONE. BEAUTY. >> WELL, DEALING WITH THE DIAGNOSIS AND LOOKING FORWARD, I THINK TO STAY SOMEWHAT POSITIVE, I HAD TO LOOK BACKWARDS AT THE THINGS WE ALREADY DONE BEFORE THIS DISEASE WE WERE ABLE TO TRAVEL A LOT. WE WERE PLANNING TO DO A LOT OF TRAVELING WHEN WE RETIRED. EVEN THOUGH I WANT TO TRAVEL MORE, WE HAD TO CUT OUR VACATION SHORT BECAUSE SHE WAS OUT OF HER ELEMENT. SHE WANTED TO COME HOME. THE AVERAGE LIFE SPAN FOR SOMEONE IN OUR SITUATION IS 4 TO 8 YEARS. SHE WAS DIAGNOSED THREE YEARS AGO, SO I DON'T WANT TO DWELL ON THAT. WE KNOW IT'S AHEAD SO LET'S JUST LIKE I SAID LIVE FOR THE DAY. I DON'T WANT THIS DISEASE TO DEFINE WHO I AM. >> HELLO. >> HELLO. [♪♪♪] >> ALL RIGHT, WAIT A SECOND. >> OKAY. >> DO I PUT THIS LIKE THIS? >> WE TRIED TO MAKE SURE WE'RE EXERCISING, WALKING, DOING AS MUCH AS WE CAN. WORKING IN THE YARD TOGETHER, IT'S BEEN AMAZING. ENJOYING THE TIME TOGETHER. >> IT'S PEACEFUL AND RELAXING. IT STILL TAKES A LOT OF SWEAT AND WORK. >> BUT HE'S GOOD AT IT. WE DIDN'T KNOW THIS BEFORE. LOOK AT THE SKILLS WE DISCOVERED. >> I HAVE LEFT THE STOVE ON, THE OVEN ON, SO I HAVE TO BE VERY FASTIDIOUS ABOUT THINGS, CONSTANTLY CHECKING BEHIND MYSELF. SOME DAYS ARE CLEAR AND THEN I WILL GET THIS... WHERE SUDDENLY EVERYTHING IS JUST JUMBLED UP. IT'S EXTREMELY FRUSTRATING. >> I AM THE PARTNER, SO MY JOB IS THAT EVERY DAY, HE'S SAFE, WE'RE SAFE, AND EVERYDAY SHOULD BE THE BEST IT CAN BE. NOW THAT DOESN'T MEAN, THAT SAID DOESN'T MEAN THAT WE DON'T HAVE TIME FOR SAD. I MEAN THAT THIS IS A DIAGNOSIS THAT'S PRETTY STINKY, BUT THE BOTTOM LINE IS EVERYDAY NEEDS TO BE THE BEST IT CAN BE. >> THERE YOU GO. >> THERE YOU GO. SOME MADE IT TO THE GROUND. >> HIS MORNINGS ARE SO MUCH DIFFERENT THAN HIS AFTERNOONS. AND SO WE WORK WITH THAT. WE DO THE THINGS IN THE MORNING THE STUFF THAT NEEDS TO GET DONE. >> I TOOK HIM OUT EVERYDAY. I FELT LIKE HE NEEDED TO SEE THE OUTDOORS, HEAR THE BIRDS, SEE THE FLOWERS, SEE THE TREES. HE STILL WAS MORE COMFORTABLE. HE WAS QUIETER. >> THE CARDINAL RULE IS NEVER ARGUE WITH A PERSON WITH ALZHEIMER'S DISEASE, BECAUSE YOU'RE GOING TO LOSE THE ARGUMENT. SO YOU HAVE TO DIVERT THEIR ATTENTION. WHEN MY WIFE WOULD SAY I WANT TO GO HOME SHE DIDN'T NECESSARILY WANT TO GO TO A STRUCTURE PER SAY. BUT SHE WANTED TO GO TO A PLACE OF COMFORT WHERE SHE DIDN'T FEEL WHAT WAS GOING ON IN HER HEAD. SO I FOUND THAT WHEN SHE GOT ANXIOUS LIKE THAT AND I WANT TO GO HOME, TO DISTRACT HER I WOULD TAKE HER OUT AND PUT HER IN THE CAR AND WE LIVED A MILE AND A HALF FROM THE OCEAN FRONT. I WOULD RIDE UP AND DOWN AND SHE WOULD LOOK AT THE LIGHTS AND JUST THINK SHE WAS IN 7TH HEAVEN AND WE'D GET BACK TO THE HOUSE AND SHE WOULD LOOK UP AND SAY OH THANK YOU, YOU BROUGHT ME HOME. AND THAT WAS A PLACE WE JUST LEFT 15MINUTES PRIOR BUT IT WAS ENOUGH IN HER MIND TO CALM HER DOWN AND DIVERT HER ATTENTION. >> WELL, MY GRANDFATHER, HE WAS USE TO EATING AT 5:00 WHEN HE WAS YOUNGER. AS HIS DEMENTIA GOT WORSE, MY MOM WOULD FREQUENTLY NOT GET HOME UNTIL 6:00, SO AT 5:00, IT WOULD START. WHERE'S SUPPER? WHERE'S SUPPER? I NEED SUPPER. HE WOULD GET ADAMANT, SO I LEARNED TO COOK SO THERE WOULD BE FOOD ON THE TABLE AT 5:00. I HAD TO LEARN TO COOK A COUPLE OF THINGS SO HE WOULD HAVE IT. THEN I COULD GIVE IT TO HIM WHEN HE WANTED IT AND WE DIDN'T HAVE A BATTLE. >> IF YOU COULD FOCUS ON THE THING THAT THE PERSON IS STILL ABLE TO DO, THEN YOU CAN SUDDENLY REALIZE ALL THE OPPORTUNITIES THAT THERE ARE. SO FOR EXAMPLE HE REMEMBERS BROOKLYN, HE REMEMBERS THAT HE GREW UP ACROSS THE STREET FROM EBBETS FIELD. >> EBBETS FIELD. >> WE DECIDED TO MAKE A STORY OF MY DAD'S STORIES ABOUT BROOKLYN. BECAUSE HE WOULD SUDDENLY COME TO LIFE. WE SAT TOGETHER WHILE I JUST TYPED IT. WE WOULD SIT AND LOOK AT THAT BOOK TOGETHER. IT'S LESS ABOUT CONVERSATION NOW, WHERE HE IS, AND THE DISEASE PROCESS. IT'S ABOUT LISTENING TO SOME MUSIC TOGETHER OR WATCHING SOMETHING. IT'S ABOUT PAINTING. HE WAS AN ARTIST AS WELL. SOMETHING LIKE THE COLORS HERE RIGHT? SO I BROUGHT SOME THINGS TO FINISH AND I BROUGHT ANOTHER BOOK TO LOOK AT. WE WERE WORKING ON THIS ONE. WHEN I WAS GROWING UP MY DAD AND I DID A LOT OF HANDS ON TYPE PROJECTS SO NOW THAT HE'S HERE AND STILL HAS THE ABILITY TO DO SOME ART I'M ATTEMPTING TO SEE WHAT HE CAN DO. I'VE DONE A LITTLE A BIT OF COLORING WITH HIM AND A LITTLE BIT OF WATER COLOR BUT I THINK THERE'S PROBABLY MORE I COULD DO AND I'D LIKE TO DO IT SOON BEFORE HE LOSES THAT ABILITY ALTOGETHER. >> THIS BRANCH OFF? >> YEAH. >> WITH SOMETHING TO FOCUS ON TO DO TOGETHER LIKE THIS, I AM NOT HAVING TO THINK OF QUESTIONS TO ASK HIM AND ENGAGE IN CONVERSATION, AND HIM BEING FRUSTRATED NOT KNOWING HOW TO ANSWER ME. THERE'S A CONNECTION WE CAN MAKE, UNSPOKEN, OUT OF THE INTUITIVENESS THAT WE HAVE IN THE ARTS, I THINK. [♪♪♪] >> THE OTHER THING WITH THE ARTS IS FUN FOR ALL OF US IS THAT WE'RE ALL MUSICAL. OUR WHOLE FAMILY HAS INTEREST IN MUSIC, GUITARS, PIANO AND SINGING. SO IT'S ONE WAY THAT CAN ALL SHARE SOMETHING AND HAVE IT BE REALLY MEANINGFUL AND POWERFUL AND ENCOURAGING. >> YEAH. [♪♪♪] >> YES. THE LAST TIME I TRIED DOING A PUZZLE WITH HER WAS RIGHT AFTER HER BIRTHDAY IN FEBRUARY, AND IT DIDN'T GO THAT WELL. SHE GOT REALLY FRUSTRATED. SHE DIDN'T DO ANY OF THAT TODAY. SHE WAS MORE PROBLEM SOLVING, THAT WAS VERY UNUSUAL BUT WE WENT WITH IT. IT WAS GREAT AND WE MANAGED TO FINISH THE ENTIRE PUZZLE. THAT IS RARE. >> YEAH, THAT'S AMAZING. >> THAT IS AMAZING. >> YEAH. >> YOU DO IT. DO YOU LIKE YOUR PICTURE? >> UH-HUH. >> MY MOTTO FOR THIS DISEASE IS HAVE NO EXPECTATIONS. I DON'T KNOW WHAT WILL HAPPEN TODAY. SHE USED TO REPEAT EVERYTHING ALL THE TIME AND SHE'S NOT DOING THAT NOW AND SHE'S BEARLY TALKING. MOST OF THE TIME. TODAY SHE SAID A LOT, DOING THE PUZZLE AND THAT WAS UNUSUAL TOO. YOU NEVER REALLY KNOW. SUNDAY SHE MIGHT HAVE SAID 20 WORDS, MAYBE. THAT'S HARD WATCHING THE WORDS DWINDLE. WHEN SHE SAID AMAZING TODAY, THAT WAS AMAZING. NOW I HAVEN'T HEARD THAT WORD IN YEARS. AND, I ALSO LOVED WATCHING HER LOOK AT THE PICTURES IN HER YEAR BOOK AND STILL BEING ABLE TO RECOGNIZE A COUPLE OF CLASSMATES. I THINK IT'S JUST ONE OF THOSE TRADEOFFS. SHE RECOGNIZES A FEW PEOPLE, BUT SHE STILL DOESN'T RECOGNIZE US. >> YEAH, THE OTHER THING THAT WAS SURPRISING TODAY IS THAT HER WALK IS MUCH LESS CONFIDENT, SHE'S REALLY DOING THAT SHUFFLE, WHICH IS HARD TO SEE. SHE IS VERY UNEASY IT SEEMED TO BE TRYING TO GET FROM THE KITCHEN TO THE BATHROOM AND THAT KIND OF THING SO YEAH INTERESTING. [♪♪♪] >> TAKING A DEMENTIA PERSON TO THE DOCTOR'S OFFICE COULD BE ONE OF THE WORSE EXPERIENCES THAT ANY FAMILY MEMBER GOES THROUGH, BECAUSE THEY DON'T UNDERSTAND WHY YOU'RE IN CHARGE. THIS IS NOT THE DOCTOR THEY REMEMBER. THEY'RE NOT HURTING RIGHT NOW YOU'RE MAKING MUCH TOO MUCH OF THIS. YOU KNOW YOU'RE JUST TRYING TO MOVE IT FORWARD AND THEY'RE JUST GIVING YOU ALL THE REASONS THAT YOU SHOULDN'T BE DOING IT. AND YOU REALLY NEED A LOT OF SUPPORT FROM THE DOCTOR'S OFFICE AND THEIR PERSONNEL TO UNDERSTAND DEMENTIA. WHEN SHE HAD A BACK FRACTURE WE HAD TO TAKE HER TO THE ER AND I HAD TO SAY SHE FELL AND THIS IS WHAT HAPPENED AND THE WHOLE TIME SHE'S SAYING I DIDN'T FALL. SHE DOESN'T KNOW. SHE'S NEVER WITH ME. SHE'S NEVER HERE. AND THE NEXT THING I KNOW THEIR SOCIAL SERVICES PERSON IS COMING AND HAVING A CONVERSATION WITH ME AND I LEARNED SINCE THEN THAT I HAD TO CARRY AROUND WITH ME THE POWER OF ATTORNEY DOCUMENT, THE ADVANCED MEDICAL DIRECTIVE DOCUMENT AND THE EVALUATION FROM HER THERAPISTS INDICATING THAT SHE HAD DEMENTIA AND FLUCTUATING DEMENTIA. AND THAT SHE COULD NOT ACCURATELY ANSWER ABOUT HER CONDITION. SO THAT CAN BE PRETTY SCARY. >> I THINK WHAT YOU FIND IN ALZHEIMER IS BECAUSE THERE IS NO MEDICINE TO ALTER THE DISEASE PROGRESSION, IT'S A SERIES OF MEDICATIONS TO SIMPLY MANAGE THE SYMPTOMS. >> ONE THING THAT WE FEEL SO BLESSED ABOUT IS THE FACT THAT HE'S STILL ABLE TO COMMUNICATE. WE BELIEVE THAT IS THROUGH THE RESEARCH WE'VE DONE AND THROUGH THE STUDIES HE'S BEEN IN. ABOUT THREE YEARS AGO DON WAS PUT INTO A STUDY AT JOHN'S HOPKINS WHERE A DBS UNIT, DEEP BRAIN STIMULATOR WAS PLACED IN HIS BRAIN NEAR THE FORNIX AND WHAT ARE HOPING THAT DOES WITH THE IMPULSES IT SENDS IT WILL ALZHEIMER'S PATIENTS BE ABLE TO COMMUNICATE. HE'S ONE OF 42 PEOPLE THAT HAVE IT THROUGH THIS STUDY. >> I CAN'T HARDLY PUT A SENTENCE TOGETHER WHEN THIS IS TURNED OFF. >> IT WON'T SLOW THE DISEASE OR STOP THE DISEASE, BUT WHAT THEY'RE HOPING FOR IS THAT IT WILL CONTINUE TO GIVE HIM THE ABILITY TO HANDLE THINGS IN A SITUATION DIFFERENTLY. >> GET HER GRACIE, GET HER. >> THERE ARE TIMES THAT HE DOES NOT COMMUNICATE AT ALL, AND HE WILL HAVE A BLANK STARE. HE'S NOT IN THERE. >> I'M NOT AWARE OF THAT. >> RIGHT. AND IT'S SO IMPORTANT WHEN SOMEONE GOES TO THE DOCTOR'S OFFICE, WHO IS JUST THINKING THEY MIGHT HAVE ALZHEIMER, OR SOMETHING GOING ON, TO BRING PEOPLE WHO KNOW YOU. IN THE BEGINNING HE SAID ARE YOU ANXIOUS AT NIGHT? NO, DON WOULD SAY BUT YET I WOULD CATCH HIM IN THE MIDDLE OF THE NIGHT WALKING AROUND THE HOUSE WITH A LOADED GUN IN HIS HAND. AND THAT WAS A BIG EYE OPENER FOR ME THAT I NEEDED TO START PROTECTING HIM AS WELL AS MYSELF. BUT IF YOU WOULD'VE ASK DON WERE YOU ANXIOUS AT NIGHT HE WOULD SAY NO. AND WHAT SCARED ME ABOUT THAT IS WHEN HE IS SUN DOWNING HE REALLY CAN'T BE RESPONSIBLE FOR WHAT HE DOES BECAUSE HE'S NOT DOING IT ON PURPOSE. >> IF YOU HAVEN'T WALKED THE WALK, DON'T GIVE ME THE ADVICE BECAUSE YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT. I HONESTLY BELIEVE THAT. WITH THIS DISEASE SPECIFICALLY YOU HAVE TO HAVE WALKED THE WALK TO APPRECIATE IT. I CAN'T FATHOM ANYTHING THAT IS MORE DIFFICULT LIKE THAT. THAT WAS A CHALLENGE TO EVERYTHING I'VE EVER DONE. >> WHAT DO YOU WANT TO EAT? >> TUNA FISH SANDWICH. >> YOU CAN TUNE A PIANO, BUT YOU CAN'T TUNE A FISH, RIGHT? [LAUGHTER] >> IT'S VERY DEMANDING, I'M WORKING FOR TWO PEOPLE NOW. COME 4:00 OR 5:00, MY PATIENCE IS BEING PEGGED. YOU KNOW, BEING ASKED THE SAME THING AND QUESTIONS OVER AND OVER, HELPING DEE DO THINGS WHICH I LOVE TO DO. PATIENCE IS VERY, VERY IMPORTANT. YOU HAVE TO HAVE MORE IN YOUR SANDWICH THAN THAT. THERE. >> SHE HAS BECOME DEPENDENT ON ME, VERY DEPENDENT. I'M HER SECURITY BLANKET. YOU KNOW SHE WAS VERY INDEPENDENT. SHE'S A TENACIOUS BUSINESS WOMAN SHE WAS GO-GETTER. SHE WAS A ROCK STAR. I MEAN SHE CLIMBED THE CORPORATE LADDER AND THEN ALL OF A SUDDEN SHE WAS SLIPPING AT WORK. THERE WAS NO REASON FOR HER TO BE FALTERING AT HER JOB AND BEING LAID OFF. WHO WOULD HAVE THOUGHT THAT AT 48 THAT SHE HAD ALZHEIMER'S DISEASE? >> OH, I NOTICE A LOT NOW. I ALWAYS THOUGHT THAT IT WOULD GO PRETTY SLOW AND TO ME, IT'S NOT GOING SLOW. AND THAT WORRIES ME AND I KNOW THAT WORRIES RICK. IT'S JUST A TERRIBLE DISEASE. I'M VERY SCARED. I GO BACK AND FORTH I CAN KEEP ON GOING AHEAD AND EVERYTHING'S GOING TO BE OK AND OTHER DAYS I'M JUST LIKE REAL DISCOMBOBULATED. >> WE'RE A MEMBER OF AN ALZHEIMER'S SUPPORT GROUP. WE'RE THE YOUNGEST COUPLE THERE. SO I SEE WHAT I'M GOING TO SEE IN DEE. COULD IT BE ONE YEAR, TWO YEARS? WE'RE JUST GOING TO KEEP MOVING AHEAD. [♪♪♪] >> IT'S A JOURNEY YOU TAKE TOGETHER, TWO DIFFERENT ROLES. IT'S STILL A LEARNING EXPERIENCE BECAUSE HE'S STILL TRYING TO FIGURE OUT HOW HE CAN DO BETTER AND HE CAN'T. ME, I CAN DO BETTER, THAT'S THE BIGGEST THING. I CAN AND HE CAN'T. AROUND HERE HE TAKES THE LITTLES ONES OUT. YOU KNOW THEY GO OUTSIDE AND EAT PEANUTS OR HE GOES OUTSIDE AND WATCHES THEM IN THE POOL, OR BIKE RIDING WITH TYLER. THEY KEEP HIM BUSY. >> OH LOAD -- O LORD, THEY ARE THE GREATEST THING IN THE WORLD. HAVING SUCH A GOOD FAMILY AS I GOT, THEY DO WONDERFUL. I FEEL LIKE THERE'S TEN POUNDS OF WEIGHT ON MY TONGUE ALONE AND IT'S KIND OF LIKE ALZHEIMER'S I GUESS SO. SOMETIMES I CAN'T SAY ALZHEIMER'S. I PUT FIVE DEMENTIAS ALL OVER THE PLACES LOOKING AT IT. THAT'S WHAT HELP ME OUT WITH IT. AND PUT DEMENTIA RIGHT THERE. THEY HAVE A THING IN THE GARAGE THAT GOES UP AND DOWN AND SOMETIMES I ACTUALLY FORGET IT AND I'M OUTSIDE. YEAH IT KIND OF WEARS YOU OUT AND THAT'S KIND OF WEIRD. I MEAN I FEEL LIKE I'M IN DECENT SHAPE. NOT ANYMORE. >> THIS IS KIND OF HARD BECAUSE I NEVER KNOW, HE CAN START THE DAY OFF GOOD AND THEN HE CAN PLUMMET BACK IN THE AFTERNOON. IF HE'S TIRED, IF HE'S STRAINED, IT'S ALL TRIAL AND ERROR BECAUSE IT'S ALL NEW TO ME. IT'S AMAZING HOW MANY DO THIS ALONE. THAT'S HARD FOR ME TO BELIEVE, BUT IT HAPPENS. YOU GOT TO HAVE THE SUPPORT I CAN'T IMAGINE. WE'VE GOT A GREAT FAMILY. I THINK YOU GO THROUGH THE STAGES AT THE BEGINNING. YOU WANT TO FIX IT YOU WANT TO PROTECT, IS THIS REALLY HAPPENING AND I THINK ONCE YOU KIND OF KNOCK THOSE WALLS DOWN AND START GOING TO THE PLACE LIKE CENTER OF AGING THROUGH THESE CLASSES RECEIVING THE HELP THAT'S THERE. >> SO I WANT TO MAKE SURE YOU'RE GETTING TAKEN CARE OF MOM. >> I'M GOOD, I GOT THEM. THAT'S HOW I LOOK AT IT. I DON'T HAVE ALL THE WEIGHT ON MY SHOULDERS. >> WE NEED TO INTERVENE MORE WITH HER, BECAUSE SHE'S NOT GOING TO ASK FOR HELP. BUT YOU DO HELP IF I NEED YOU. >> WE DO, BUT I MEAN WE'RE GOING TO HAVE TO OVERSTEP OUR BOUNDARIES WITH HER. >> I'M GETTING CONCERNED BECAUSE I SEE HE'S NOT AS ACTIVE AS HE USE TO BE. HE USED TO ALWAYS BE SO ACTIVE. >> THIS IS EFFECTING ALL YOU GUYS. YOU DESCRIBE HIM AS YOUR BEST FRIEND, YOU'RE SO CLOSE TO HIM, HOW IS THIS EFFECTING YOU GUYS? >> I DON'T HAVE THE WORDS. IT'S JUST HARD. >> I DON'T KNOW, HE WAS MY SUPERHERO, AND MY HERO AND IS AND WILL BE. I'M BLESSED THAT WE'RE CLOSE AND WE HAVE EACH OTHER TO DEPEND ON AND TALK TO. THE FACT THAT THIS BROUGHT US ALL HERE TOGETHER I MEAN THAT'S AWESOME. >> YEAH, THE FACT THAT HE'S SITTING OUT THERE, LAUGHING, SMILING, THERE'S STILL A LOT LEFT. WE'RE NOT QUITE TO HIS SHELL YET. I FEEL LIKE THERE'S SO MUCH, AND IT'S A BEAUTIFUL THING, AND I'M THANKFUL. I FEEL LIKE THIS IS TIME WE'RE NOT TAKING FOR GRANTED. SO FOR ME, THAT TODAY IS A GOOD DAY. >> DO YOU CLAIM ALL OF US? >> YES. >> OKAY, WE WERE TRAVELING NORTH, HE BECAME DISORIENTED THERE. I TOLD HIM I'M TAKING YOU TO BOSTON. HE SAID LIKE HELL YOU'RE TAKING ME BACK TO BOSTON. HE GOES LIKE HELL YOUR TAKING ME BACK TO BOSTON. SO HE GOES INTO THE SHOWER AND I THOUGHT HOW AM I GOING TO KEEP HIM HERE, I CANNOT GET UP RIGHT NOW AND DRIVE 300 MILES. SO, I TOOK THE CLOTHES AND I HID THEM UNDER THE BED. SO HE CAME OUT LOOKING FOR HIS CLOTHES AND THEY WEREN'T THERE. I SAID I JUST GAVE THEM TO HOUSEKEEPING. HOUSEKEEPING HAS YOUR CLOTHES THEY'RE GOING TO WASH THEM AND WERE GOING TO GET THEM BACK IN AN HOUR. AND HE SAID, JESUS CHRIST YOU -- I SHOULD SLIT YOUR THROAT FOR THAT DECISION. AND THAT WAS THE FIRST TIME THAT I GOT REALLY SCARED AND I THOUGH OH MY GOSH HE DOESN'T EVEN TALK LIKE THAT AND YOU WONDER WHO IS THAT PERSON. AND SINCE THAT TIME WE'VE GOT HIM ON DIFFERENT MEDICATIONS AND WE HAVE HELP WITH THE ANXIETY AND AGGRESSION AND SO THOSE MOMENTS DON'T REALLY SPIN OUT LIKE THAT ANYMORE. >> GOOD MORNING. >> GOOD MORNING. >> HOW ARE THINGS IN THE OFFICE TODAY? >> OFFICE TODAY IS WONDERFUL. >> I MEAN HE'LL GET UPSET WHEN I TELL HIM WHAT TO DO IN THE SHOWER, BECAUSE THEY FEEL LIKE THEY DON'T NEED HELP. I'VE BEEN DOING THIS MY WHOLE LIFE. GET THE F OUT OF HERE, BUT I DON'T GET THE F OUT OF HERE. I STAY THERE AND I CONTINUE TO DO WHAT HAS TO BE DONE AND IT ALL GETS DONE AND HE THANKS ME. IT'S JUST DIFFERENT EVERY DAY. YOU JUST DON'T KNOW. YOU DON'T KNOW. >> OKAY, SO THE VIDEO I DID OF MY HUSBAND SPINNING OUT OF CONTROL WAS TAKEN RIGHT BEFORE I WAS GOING UP NORTH FOR OUR LAST SUMMER IN NEW HAMPSHIRE WITH ALL THE FAMILY, AND I WANTED THEM TO KNOW REALLY WHAT COULD HAPPEN BECAUSE I KNEW THEY WOULD BE SPENDING TIME ALONE WITH HIM AND YOU NEVER KNOW WHEN IT'S GOING TO HAPPEN. >> YOU DON'T BELONG HERE, OKAY? THIS BELONGS TO THE TOP PERSON OF THIS COMPANY, RIGHT HERE. >> OKAY. >> SO THIS IS LOCKED. YOU DON'T BELONG HERE. >> OKAY. >> YOU DON'T BELONG HERE. >> ALL RIGHT. >> ALL THIS STUFF HERE HAS NOTHING TO DO WITH YOU. >> OKAY. >> WHERE YOU BELONG IS IN HERE OR EITHER WITH ME DOWN THERE. >> YOU WANT ME TO SLEEP IN HERE. >> EITHER HERE OR ME DOWN THERE. THIS IS PROBABLY BETTER FOR YOU. >> ALL RIGHT, I'LL TAKE THIS ROOM. >> THEY HAD NO IDEA THAT WAS PART OF ALZHEIMER. BECAUSE WHAT THEY SHOW YOU ON TV, THE PERSON LEAVES THEIR KEYS IN THE REFRIGERATOR. THAT IS NOTHING COMPARED TO WHAT WE HAVE TO MANAGE. >> YOU DON'T GO IN HERE. >> I DO. >> YOU DO NOT. >> BUT THE WAY I LOVE THE WAY THE VIDEO SHOWS IS IT SHOWS HIM THE DAY AFTER, BEING THAT SWEET MAN THAT HE IS. >> THAT LOOKS GOOD. >> HEY, YOU'RE GOING TO GET YOUR COFFEE? >> YES. >> THE REASON I WANT TO SHOW THIS VIDEO, IT'S NOT A REFLECTION ON WHO MY HUSBAND IS, BUT IT'S THE DISEASE. HE WOULD NEVER ACT LIKE THAT. >> THERE'S THIS JUDGMENT WE PUT ON CAREGIVERS OF FAMILY MEMBERS ON HOW THEY TREAT AND HOW THEY TALK, AND EVERYBODY IS SO SCARED AND THEY'RE SILENT ABOUT IT. I THINK IT ALL GOES UNDERGROUND. SO THERE'S A LOT MORE UGLY STUFF GOING ON. PEOPLE ARE DOING THE BEST THEY CAN BECAUSE THEY'RE AFRAID TO ASK QUESTIONS BECAUSE THEY'LL GET JUDGED. WE'VE GOT TO START BEING AWARE THAT EVERY TIME THERE'S A PERSON LIVING WITH DEMENTIA WE ACTUALLY HAVE TWO PEOPLE WHO ARE REALLY STRUGGLING. ONE NIGHT HE WOKE UP AND GRABBED MY HAND AND PULLED MY HAND BACK SO HARD AND HE SAID, SOMEBODY IS AFTER US, WE'RE BEING CHASED THEY'RE GOING TO HURT US. AND HE WAS FRANTIC. BUT HE BENT MY HAND BACK SO FAR I THOUGHT HE WAS GOING TO BREAK MY HAND. I TURNED THE LIGHTS ON, I TALKED TO HIM. I CALMED HIM DOWN. I WAS SCARED. I DIDN'T KNOW WHAT TO DO. SEE THAT'S WHERE YOU'VE GOT TO UNDERSTAND, IT'S A BRAIN DISEASE. AND THE BRAIN IS DETERIORATING. IT'S LUCKY IF IT CAN REMEMBER HOW TO PUT A SPOON TO YOUR MOUTH. IT'S VERY HARD ON THE CAREGIVER BECAUSE YOU'VE GOT TO BE ON TOP OF IT 36 HOURS A DAY. YES YOU LOSE SLEEP. SOMETIMES HE'D TAKE A NAP AND I'D PRAY IT WOULD BE A 15 MINUTE NAP SO I COULD TAKE A SHOWER. >> YOU'RE THE BEST. >> YOU'RE THE BEST DAUGHTER. >> THANKS MAMA. >> I GUESS MAYBE THAT'S WHAT I WISH I KNEW ABOUT BEING A CAREGIVER. THERE IS NO BREAK. AND SO THAT'S WHERE THE IDEA THAT YOU KNOW MY EMOTIONAL RESOURCES ARE LIMITED. YOU KNOW WHEREAS I'M SO PATIENT WITH MY MOM BUT IT'S LIKE THAT'S WHERE MY PATIENCE ENDS BECAUSE I HAVE TO TELL HER TO DO SOMETHING TEN TIMES. SHE REALLY CAN'T DO MUCH BY HERSELF ANYMORE AT ALL. I THINK IT'S IMPORTANT TO CONSTANTLY BE GRIEVING BECAUSE OTHERWISE YOU'RE JUST IN DENIAL. IT WORKS BUT IT'S EXHAUSTING, YOU KNOW, THAT'S WHAT I TELL MY THERAPIST, EVERY DAY YOU HAVE TO ACTIVELY WORK ON IT. >> YOU'RE THE BEST DAUGHTER. >> THANKS MAMA. >> AND ADOPTING A DOG WAS A BIG PART OF THAT TOO. THAT'S GOING TO FORCE ME TO SPEND TIME OUTSIDE. PEOPLE ARE LIKE, YOU'VE GOT ALL THIS AND NOW YOU'RE GOING TO GET A DOG AND YOU DON'T HAVE ANY MONEY? AND I'M LIKE YEAH, IT'S A DUMB DECISION BUT IN A LOT OF WAYS IT'S A REALLY GOOD DECISION, NOT THAT MY DOG IS GOING TO HELP ME WITH ALL THESE PROBLEMS BUT TO JUST LOVE ME UNCONDITIONALLY, RIGHT, AND TO ALWAYS BE THERE IS A SILLY THING BUT IT MATTERS. >> YOU HAVE TO PUT YOURSELF FIRST. AND THAT'S IMPORTANT BECAUSE YOU CAN'T BE A CAREGIVER IF YOU'RE ILL YOURSELF. AND MOST OF THE TIME YOU FALL ILL BECAUSE YOU'RE NOT GETTING ENOUGH SLEEP, YOU'RE NOT GETTING ENOUGH EXERCISE, YOU'RE NOT EATING WELL. YOU'RE SO WORRIED ABOUT THEM, BUT IF YOU DON'T TAKE CARE OF YOURSELF SOMETIMES THE CAREGIVER DIES BEFORE THE LOVED ONE. >> I ACTUALLY FELT LIKE I WAS HIS CAREGIVER, MAKING SURE YOU WERE EATING, MAKING SURE HE WAS -- AND IT DIDN'T ALWAYS WORK, AND SOMETIMES IT WOULD END UP BEING A FIGHT, BUT TRYING TO MAKE SURE HE WAS DOING WHAT HE NEEDED TO DO TOO. >> OH, IT HELPED ME IMMENSELY. I DON'T THINK I COULD HAVE DONE IT THE QUALITY OF WHAT I DID WITHOUT HER. SHE PUSHED ME IN TIMES THAT I NEEDED PUSHING. AND IN SOME CASES NOT ENOUGH. BUT BECAUSE SHE WASN'T TOTALLY IN IT SHE WAS ABLE TO SEE THINGS FROM A DIFFERENT WAY AND GOT ME TO DO THINGS THAT I PROBABLY WOULDN'T HAVE DONE IF I WAS DOING IT MYSELF YOU KNOW AND THAT HELPED IMMENSELY. >> RIGHT, HOW MUCH LONGER DO YOU PLAN TO MAKE SURE SHE EATS AT LEAST ONE MEAL A DAY, YOU KNOW. >> RIGHT. >> WE GO THROUGH ROUGH TIMES. I USED TO COME HOME SOMETIMES AND GO IN MY BEDROOM AND SIT IN THE CLOSET AND JUST CRY BECAUSE I WAS WATCHING MY MOM DISAPPEAR. AND THEN I'D PULL MY BOOTSTRAPS ON AND SAY, “I GOT TO DO THIS. ” SO THOSE ARE THE KIND OF THINGS THAT YOU HAVE TO WORK THROUGH. IT'S NOT THAT SIMPLE. AND THERE'S NO FORMULA THAT I CAN GIVE ANYBODY THAT SAYS DO IT THIS WAY. IT'S WHAT WORKS FOR YOU IN YOUR HEART AS LONG AS YOU DON'T LOSE YOURSELF. WE JUST FORGOT OUR ANNIVERSARY QUITE FRANKLY. [LAUGHTER] SO, I MEAN THIS IS KIND OF HOW IT IMPACTS HUSBAND AND WIFE. YOU KNOW YOU JUST DON'T HAVE TIME TO DO THE THINGS YOU NEED TO DO. BUT WE TRY. WE STILL ARE TRYING. >> I THINK OVERALL, OUR ENERGY LEVEL IS ALSO AFFECTED, SO WE'RE JUST TIRED. >> I DID PRETTY WELL FOR THE FIRST 3.5 YEARS, BUT I HAD A BAD CAR ACCIDENT, PARTLY BECAUSE I WAS SOFA TEENAGED AND DISTRACTED. I WAS ON MY WAY TO PICK HER UP AND I REAR-ENDED A CAR. AND I WAS LUCKY I WALKED OUT OF IT. THAT CAN KIND OF TELL YOU THAT YOU'RE JUST NOT A HUNDRED PERCENT. >> WE ALL HAVE NEGATIVE THOUGHTS ABOUT WHAT WE'RE GOING THROUGH AND THE SOONER WE CAN STOP FEELING THOSE TERRIBLE THOUGHTS, THE BETTER WE CAN START RESTORING OUR ENERGY. SO WE JUST HAVE TO FIND WAYS TO FIND OUR CENTER. SO MEDITATION IS VERY POWERFUL. ACUPUNCTURE. CRANIAL SACRAL THERAPY. AROMA THERAPY, IS FABULOUS. IT WILL HELP CLEAR SOME OF THE NEGATIVITY AND THE DRAIN. >> MORE THAN LIKELY, IT TENDS TO BE THE CAREGIVERS GET SICK QUICKER AND END UP DYING BEFORE THE PERSON THAT THEY'RE CARING FOR DIES. AND THAT'S SOMETHING THAT THE ALZHEIMER'S ASSOCIATION WILL TELL YOU OVER AND OVER AGAIN AND BUT IT'S HARD TO LISTEN TO THAT BECAUSE YOU FEEL SELFISH. AND YOU FEEL LIKE OH I'M WORRIED ABOUT HOW I'M FEELING VERSUS HOW MY LOVED ONE IS FEELING. LAST YEAR, DON WAS SHOWING SIGNS OF PROGRESSION AND I WAS HELPING CARE FOR MY FATHER WHO RECENTLY PASSED AWAY FROM CANCER AND I DIDN'T REALLY PAY ATTENTION TO MY HEALTH LIKE I SHOULD HAVE AND I GOT VERY, VERY SICK. I ENDED UP IN THE HOSPITAL FOR 45 DAYS. I HAD NO ONE IN PLACE TO TAKE CARE OF DON AND WE HAD TO ACT QUICKLY. LUCKILY MY SON CAME HOME AND HE REALLY HAD TO FILL IN FOR ME BECAUSE I DID NOT HAVE THAT PLAN SET UP, I DID NOT THINK THAT WOULD HAPPEN. IT MAKES YOU REALIZE THAT YOU HAVE TO THINK OF EVERY POSSIBLE RISK OF SOMETHING HAPPENING AND YOU NOT BEING THERE AS THE MAIN CAREGIVER. >> A LOT OF TIMES I WOULD BE LIKE DRIVING TO PLACES THAT WE'VE BEEN, LIKE A VIOLIN LESSON, PIANO LESSON, SOFTBALL PRACTICE, AND HE WOULDN'T KNOW HOW TO GET THERE. IT PUT A LOT OF PRESSURE ON ME TO REMEMBER HOW TO GET THERE AND I WOULD GET FRUSTRATED WHEN HE DIDN'T UNDERSTAND WHAT I WAS SAYING ON HOW TO GET THERE. BUT I WOULD GET MAD AT HIM. >> SOMETIMES HE WOULD GET SAD AND UNDERSTAND THAT WE WERE HIS KIDS, AND WE WERE GETTING MAD AT HIM BECAUSE HE DIDN'T KNOW STUFF. A LOT OF TIMES HE WOULD HANDLE IT WELL, BUT YOU COULD TELL HE WAS SAD. >> THE KIDS HAVE SAVED ME OVER AND OVER AGAIN, BECAUSE I HAD TO FOCUS ON BEING A MOM AND NOT FOCUS ON WHAT A HORRIBLE TIME IN MY LIFE THIS HAS BEEN WATCHING JIM DECLINE. I TRY NOT TO GET BITTER ABOUT A LOT OF THINGS. IT DOESN'T DO ANYBODY ANY GOOD BUT I SOMETIMES DO GET A LITTLE BITTER BECAUSE WE JUST FELL THROUGH CRACK AFTER CRACK AFTER CRACK AND IT TOOK AWAY OUR FAMILY'S TIME WITH JIM TO ENJOY HIM WHILE HE WAS AT HOME. SO WE WERE TURNED DOWN BY THE V.A. BY SOCIAL SERVICES AND BY MEDICAID. IT WAS VERY STRESSFUL AND VERY HARD AND THEN YOU WOULD TRY TO TALK TO PEOPLE ABOUT IT AND TRY TO GET THEM TO UNDERSTAND THEY REALLY DIDN'T BELIEVE ME BECAUSE THEY WERE LIKE, THERE'S GOT TO BE HELP OUT THERE HE'S RETIRED MILITARY, THE V.A. SHOULD HELP HIM. AND I'D SAY, WELL, THE V.A.'S NOT HELPING HIM. AND THEY'D SAY, WELL, WHAT ABOUT SOCIAL SERVICES OR MEDICAID OR MEDICARE? AND I WAS LIKE, NO, IT DOESN'T COVER THIS. THERE'S NOT ONE PERSON TO HELP YOU GO AND NAVIGATE ALL OF THE DIFFERENT SERVICES, FILL OUT THE PAPERWORK AND GET ANSWERS AND DO ALL THE FOLLOW-UP. YOU HAVE TO DO THAT YOURSELF AND IT TAKES A LOT TO BE ABLE TO WORK THROUGH; EVERYTHING FROM GETTING YOUR DISABILITY TO FINDING TREATMENTS TO GETTING ASSISTANCE TOWARDS THE END. SO IT'S A LOT ON THE CAREGIVER. 24/7 ALL I THOUGHT ABOUT WAS ALZHEIMER'S. I WENT ONLINE AND DID RESEARCH, I TALKED ABOUT IT, I ADVOCATED, I STARTED WRITING THE BLOG ABOUT IT. IT JUST CONSUMED MY WHOLE WORLD. YET, I THINK AGAIN AS A HUMAN, AS THIS PERSON I'M JUST HOPING BEYOND HOPE THAT MAYBE THEY'RE WRONG. MAYBE THIS ISN'T REALLY HAPPENING. MAYBE HE'S GOING TO BE OKAY FOR A WHILE. MAYBE THE KIDS CAN GET THROUGH HIGH SCHOOL. YOU JUST START LOOKING FOR HOPE. SO EVERY TIME HE WOULD DO SOMETHING THAT WAS SO UNLIKE HIM AND A SIGN THAT THE DISEASE WAS PROGRESSING IT LITERALLY WOULD SEND ME IN A LITTLE TAILSPIN. >> AFTER THE 8 YEARS, IT PROBABLY STARTED TO GO DOWNHILL. THE SOAPIES ON TV DISAPPEARED. THE ONLY THING THAT WORKED WAS GOING OUT FOR A RIDE, TAKING THE DOG FOR A WALK. AND THEN THE THING THAT SAVED MY LIFE FOR A LONG PERIOD OF TIME WAS THAT SHE WAS ABLE TO FOLD LAUNDRY. AND THAT GAVE HER A FEELING OF ACCOMPLISHMENT. SHE WAS ABLE TO DO SOMETHING. AND THEN WHEN IT GOT TO THE POINT WHERE I SAID I JUST CAN'T ENTERTAIN HER ANYMORE, SHE WASN'T SLEEPING AT NIGHT. I DIDN'T' THINK I WAS GETTING ENOUGH ACTIVITY DURING THE DAY SO I DECIDED TO PLACE HER IN AN ADULT DAY CENTER AND THAT PROBABLY ENABLED ME TO KEEP HER AT HOME BECAUSE THAT KEPT HER ACTIVE ALL DAY LONG AND I WAS ABLE TO TAKE THE 4:00 TO 12:00, AND THE 12:00 TO 8:00 SHIFT, SO I ONLY HAD TWO SHIFTS A DAY OPPOSED TO THREE. IT'S FRUSTRATING THE THINGS YOU TAKE FOR GRANTED. PUT ON YOUR COAT SARAH, WE'RE GOING TO THE ADULT DAY CENTER. AND SHE WOULD LOOK AROUND, SHE DIDN'T KNOW WHAT A COAT WAS. SO YOU'D GIVE HER THE COAT AND SHE WOULDN'T KNOW HOW TO PUT IT ON. SO YOU'D HAVE TO PUT HER ARM IN THE COAT AND PULL IT UP AND THEN PUT HER OTHER ARM IN. AND IT REALLY IS FRUSTRATING TO WATCH THAT TYPE OF DETERIORATION IN THAT PERSON THAT YOU REALLY LOVE AND CARE FOR. >> READY TO GET OUT? >> OKAY. >> GOOD JOB. >> READY TO GET IN THE TRUCK? >> OKAY, GRAB THE HANDLE, TURN, GRAND THE HANDLE. >> OH. I DON'T KNOW IF I CAN REACH IT. >> OKAY, STEP UP, PUT YOUR HAND HERE, STEP UP ON THE RUNNING BOARD, PUT YOUR FOOT RIGHT HERE, THERE YOU GO. STEP UP. THERE YOU GO. >> DO I GET UP HERE? >> UH-HUH. VERY GOOD. >> OKAY. >> AND WE GOT TO PUT YOUR SEAT BELT IN. >> YEAH. >> SO YOU DON'T GET A TICKET FROM THE MEAN OLD POLICEMAN. >> YOU KNOW, WE CARRY OUR SUPPLY BAG AROUND WITH THE PULL UP UNDERWEAR, AND ALL KINDS OF THINGS TO GRAB AND KEEP HER ATTENTION. AND YOU LEARN OVER TIME YOU NEED THOSE KINDS OF THINGS BECAUSE IF THE CAR IS A MILE AWAY IN SOME GARAGE AND THINGS START TO GO BAD WHAT DO YOU DO? SO WE JUST TAKE THE BAG EVERYWHERE. >> YOU OKAY MOM? >> YEAH. >> WELL THAT STUFF GOES IN THE HOUSE, THAT'S WHAT I BOUGHT FOR YOU TODAY. >> OH. >> PRETTY COOL HUH? >> THANK YOU. >> YOU'RE WELCOME. >> HELLO THIS IS LORETTA, HOW ARE YOU? >> I'M FINE. >> WE'LL BE BACK IN 10 MINUTES OR SO. >> NO PROBLEM. >> SHE HAD A GOOD DINNER AND THE BRA SHE'S WEARING IS ONE OF THE NEW ONES. IT DOES FIT SO I'M GOING TO GET HER MORE TOMORROW. >> OKAY, THANK YOU. >> SEE YA, BYE. >> THE CAREGIVER I WAS JUST TALKING TO HAS BEEN THERE FOR AT LEAST 10 YEARS AND MAYBE LONGER. I TALK TO THEM EVERY SINGLE DAY. PRINCE GEORGE'S COUNTY, WHICH IS WHAT THIS IS, ONE AN AWARD TO BECOME A TESTING GROUND FOR DEMENTIA FRIENDLY PLACES, MEANING THERE'S ALWAYS SOMEBODY THAT WILL BE TRAINED IN HOW TO COMMUNICATE WITH DEMENTIA PATIENTS. JUST A COUPLE WEEKS AGO SOMEBODY GOT LOST AND THEY PUT OUT THE SILVER ALERT AND THE NICE POLICEMAN WHO HAD BEEN DEMENTIA TRAINED AND HE WALKED WITH THE LADY IN THE WOODS, KEPT HER CALM UNTIL HER DAUGHTER CAME. SO THAT'S A SCARY THING. I'VE ONLY LOST MY MOTHER ONCE AND SO I UNDERSTOOD WHAT THAT LADY WAS GOING THROUGH FOR SURE. >> LATER -- ALL RIGHT, WE ARE HERE. ALL RIGHT KIDDO. YOU WANT TO TURN THIS WAY FOR ME, SWING YOUR LEGS ALL THE WAY AROUND. ALL RIGHT. WOO HOO. RIGHT HERE. >> A STEP RIGHT THERE. >> GOOD JOB. MAN, THAT WAS AWESOME. HOLD ON. YOU READY? ALL RIGHT. >> WHERE WE GOING? >> WE'RE GOING RIGHT HERE. >> IT'S A SINGLE FAMILY HOME, VERY MUCH LIKE OUR FLOOR PLAN IN OUR HOUSE. SO I FEEL YOU KNOW SHE'S VERY SAFE, I'M VERY HAPPY WITH IT, AND I'M FINE WITH PAYING. MY GREATEST FEAR AND THE REASON YOU LOOK AT OPTIONS AND WHAT MIGHT BE COMING IN THE FUTURE IS BECAUSE I'M ASKING MYSELF HOW MUCH LONGER AM I GOING TO BE ABLE TO DO THAT? [♪♪♪] >> NOW THAT SHE IS HERE, I AM STILL A 24 HOUR CAREGIVER. I STILL GET CALLED YOU KNOW EVERY TIME SHE GETS A SCRAPE OR FALLS DOWN OR IS SICK. IT'S HARDER THAN I THOUGHT IT WOULD BE. I THOUGHT THERE WOULD BE THIS GREAT LIFTING OF ANXIETY AND RESPONSIBILITY AND THERE'S NOT. EVEN THOUGH THIS IS A DEMENTIA UNIT IT IS LICENSED AS AN ASSISTED LIVING FACILITY AND IT'S TRUE. THEY GET ASSISTANCE WITH WHAT THEY DO. BUT ONCE SHE NEEDS HELP WITH ABSOLUTELY EVERYTHING, WHAT THEY DO HERE IS THEY MOVE THEM TO THE NURSING CENTER, WHICH IS YOU KNOW SORT OF THE THIRD PART OF THIS PARTICULAR COMMUNITY. >> SHE REFUSED TO GO TO A DOCTOR EVER, AND NEVER HAS GONE TO A DOCTOR, AND WAS NEVER ON ANY MEDICATION. HEALTHY AS A LARK AS FAR AS OVERALL GENERAL HEALTH AND SO TRYING TO GET HER TO A DOCTOR TO GET SOMETHING ON PAPER THAT SAID SHE NEEDED TO BE IN ASSISTED LIVING WAS ANOTHER ISSUE. YEAH. SO WE TOOK HER UNDER THE PRETENSE THAT WE WERE GOING TO GET HER LEG OR FOOT LOOKED AT. AND WE TOLD THE DOCTOR THAT. HE AGREED TO GO ALONG WITH THAT. >> HE SAID LET'S GO WITH THAT. >> SO ONCE HE SURMISED IN TALKING WITH HER, AND YES, THIS IS SOMETHING THAT NEEDS TO HAPPEN, HE CAME OUT AND SAID IT LOOKS LIKE WE'RE GOING TO SEND YOU TO A HOSPITAL TO HAVE YOUR LEG CHECKED OUT. YOU'LL JUST BE THERE A COUPLE OF DAYS. SO WHEN WE GOT THERE WE JUST TOLD THE ASSISTED LIVING PEOPLE, SHE'S HERE FOR HER LEG OR HER FOOT, WHICHEVER IT WAS. AND THEY KNEW TO GO WITH IT. AND SO THEY ALL SAID, OH, WE'RE SO SORRY TO HEAR YOUR FOOT'S GOT A PROBLEM. WE'LL TAKE CARE OF YOU AND HERE'S YOUR ROOM AND THAT'S ESSENTIALLY THE ONLY WAY WE COULD GET HER IN THERE. SHE ACCEPTED THIS AND LET US DO THAT. >> SURPRISINGLY WELL. >> AND THAT WAS HER LIFE FROM THAT POINT ON, TRYING TO JUST FIGURE OUT WHERE ALL THAT MONEY WAS COMING FROM, AND HOW WE WERE GOING TO DO IT WAS THE BIG PUSH FOR ME. I JUST, I DIDN'T KNOW HOW WE WERE GOING TO PAY IT. I STILL DON'T KNOW HOW WE PAID IT. >> WE MADE THE MOVE. SHE HAD DIFFICULTY WITH THE TRANSITION. SHE WAS CONFUSED. SHE STILL HUNG ON TO THAT I'M GOING TO GO HOME SOON. I'LL TRY THIS OUT FOR A WHILE AND THEN IF IT DOESN'T WORK OUT WE'LL GO SOMEWHERE ELSE. IT TOOK TIME FOR ME TO LEARN NOT TO ARGUE WITH THAT. TO JUST SAY, YUP, I THINK THAT'S A GOOD IDEA. BUT THEN JUST CONTINUE ON THE PATH. SO IT WASN'T TWELVE WEEKS THAT I REALIZED THERE WAS NO WAY TO CONFIRM THAT SHE WAS GETTING HER MEDICATIONS OR THAT SHE WAS GETTING HER CHECKS WITHOUT HAVING PRIVATE DUTY THERE IF I COULDN'T BE THERE. EVEN THEN WITH HER DEMENTIA SHE COULDN'T REMEMBER THAT SHE COULDN'T WALK WHEN SHE WANTED TO WALK. WE PRETTY MUCH MOVED TO 24/7 PRIVATE DUTY IN AN ASSISTED LIVING FACILITY. YOU KNOW THERE ARE REGULATIONS IN PLACE FOR ASSISTED LIVING. I THINK IN THE REALITY OF WHO YOU SEE ADMITTED AND WHO YOU SEE LIVING THERE I DON'T THINK THE REGULATIONS GO FAR ENOUGH TO PROTECT THEM. >> HIS LAST MONTH AT HOME, HE SAT ON OUR COUCH AND LISTENED TO ME MAKE PHONE CALL AFTER PHONE CALL AFTER PHONE CALL, BEGGING FOR HELP FOR HIM. HE HAD GOTTEN VIOLENT ON A TRIP TO CT AND I COULDN'T LEAVE HIM ALONE. I COULDN'T LEAVE HIM ALONE WITH THE KIDS ANYMORE. I DIDN'T KNOW WHEN HE WOULD HAVE ANOTHER EPISODE. BUT HE JUST SAT AND LISTENED OVER AND OVER AND OVER AGAIN TO ME BEG, AND I REGRET THAT PROBABLY MORE THAN ANYTHING BECAUSE IT TOOK A LOT OF PRIDE FROM HIM TO KNOW THAT HE WAS THAT KIND OF BURDEN ON HIS FAMILY. AND IT WAS HURTFUL TO KNOW THAT I WAS SO DESPERATE TO GET HIM OUT OF THE HOUSE. FORTUNATELY, OUR COMMUNITY SURROUNDED US. THAT SAVED OUR FAMILY BECAUSE HONESTLY I REALLY DON'T KNOW WHAT I WOULD HAVE DONE IF I WOULD'VE HAD TO KEEP HIM AT HOME. >> IT'S ALMOST BRADLEY'S BIRTHDAY. BRADLEY IS GOING TO BE 12. >> OH? >> YES. >> OH MY GOSH, THAT'S RIGHT, HE'S GOING TO BE 12 YEARS OLD. FRANKIE IS 15, SHE'S TAKING DRIVER'S ED NOW. AND SHE'S PLAYING SOFTBALL. SHE'S PLAYING FOR THE SCHOOL. BRADLEY IS TRYING OUT FOR THE SCHOOL BASKETBALL TEAM, FOR HER MIDDLE SCHOOL. THEY HAVE BEEN REALLY BUSY, DOING LOTS OF STUFF, JUST LIKE YOU ALWAYS HAVE BEEN. >> WHEN HE WAS LYING IN BED AND HE WAS NON-RESPONSIVE AND HE WAS DYING, IT WAS REALLY, REALLY HARD TO SEE HIM LIKE THAT. SO I GO FROM PICTURING HIM THE EPITOME OF HEALTH AND LOVE TO SEEING HIM SICK AND THEN DEAD. AND SO THEN I TRY TO FORCE MYSELF NOT TO DO THAT BUT THEN IT HURTS BECAUSE IT'S VERY HARD TO RECOGNIZE THAT SOMEBODY SO HEALTHY COULD NOW BE GONE COMPLETELY. [♪♪♪] >> SARAH WAS IN BED MAYBE FOUR DAYS BEFORE SHE DIED. SHE WAS STANDING PRIOR TO THAT. SHE WAS LAYING IN BED, JUST GOING THROUGH THE DYING PROCESS, SHE STOPPED DRINKING, STOP EATING, AND THE ORGANS WERE SHUTTING DOWN. SHE VERBALIZED AND SAID I'M DYING. I ACTUALLY WATCHED THE PROCESS WITH MY WIFE UNTIL SHE TOOK THE LAST BREATH AND SHE LITERALLY JUST FORGOT HOW TO BREATHE AND DIED. WHEN THE DEATH CAME I THOUGHT I'VE HAD PLENTY OF TIME TO PREPARE FOR THIS AND IT WAS A TOTALLY DIFFERENT TYPE OF GRIEVING. ONCE THE DEATH ACTUALLY OCCURRED IT WAS VERY DIFFICULT PERIOD OF TIME FOR ME PERSONALLY. I HAD A DIAGNOSTIC BRAIN AUTOPSY DONE AT THE UNIVERSITY OF VIRGINIA AND THERE WAS NO DOUBT, THE BRAIN WAS FULL OF PLAQUES AND TANGLES. COMPLETELY FULL. SO THE DIAGNOSIS OF PROBABLY ALZHEIMER'S AT THAT POINT BECAME IT WAS ALZHEIMER'S DISEASE DEFINITELY, NO DOUBT. >> I NEVER GOT TO SAY GOODBYE. BY THE TIME I REALLY KNEW MY MOM HAD THIS DISEASE THERE WASN'T ANY OPPORTUNITY TO HAVE A REAL CONVERSATION. THAT'S WHY THEY CALL IT THE LONG GOODBYE. SO WHEN SHE DIED AS I HELD HER AND TOOK THAT LAST BREATH THE FLOODGATE OF TEARS CAME BECAUSE I REALLY LEARNED SOMETHING. THAT EVEN THOUGH SHE COULDN'T COMMUNICATE WITH ME THE WAY WE COMMUNICATE WITH PEOPLE SHE WAS STILL ALIVE. SHE WAS STILL MY MOM. >>S IF THE -- IT IS THE SIXTH LEADING CAUSE OF DEATH. THAT'S A PRETTY BIG NUMBER. NO CURE. 5 MILLION PEOPLE LIVING WITH THIS DISEASE, AND SPEAKING ABOUT IT AND NOT BEING AFRAID TO SAY THE WORD LOUD AND CLEAR, WE'LL FIND A CURE. I'M VERY HOPEFUL, WE'LL FIND A CURE. >> HIS MOTHER PASSED AWAY FROM YOUNGER ONSET AND HIS BROTHER PASSED AWAY FROM YOUNGER ONSET. IT WAS REALLY IMPORTANT TO HIM TO BE A PART OF THE SOLUTION BECAUSE HE CARRIED AROUND A LOT OF GUILT, THINKING THAT HE MAY HAVE PASSED THIS HORRIBLE DISEASE ON TO HIS CHILDREN. AND HE'S PUSHING ME FORWARD TO ALWAYS ADVOCATE TO HELP FIND A CURE BECAUSE THAT WAS REALLY IMPORTANT TO HIM AND IT WAS ON HIS BUCKET LIST. >> HOW ARE YOU DOING? I'M SO PROUD OF YOU. >> HI. >> PEOPLE ARE RALLYING AROUND IT TO TRY TO FIND AN EARLIER DIAGNOSIS, BETTER TREATMENT. THERE'S NOBODY OUT THERE WHO HASN'T HAD IT TOUCH THEM OR THEIR FAMILY AND I THINK EVERYBODY'S BECOMING MORE AWARE OF IT AND WHEN YOU BECOME AWARE OF SOMETHING THEN YOU START TO ACT ON IT. >> IT'S AFFECTING EVERYONE IN EVERY CLASS LEVEL, IN EVERY AGE LEVEL, AND EVERY GENDER, ALL DEMOGRAPHICS ACROSS THE BOARD. IT'S NOT JUST GRANDMA'S DISEASE ANYMORE. IT'S EVERYONE'S. >> THIS DISEASE WILL EITHER SHUT YOU DOWN OR GIVE YOU A CATALYST TO DO THINGS. YOU WANT TO DO SOMETHING, YOU WANT TO FIX THINGS, TO MAKE LIFE AS NORMAL AS POSSIBLE. >> THE PERSON WHOSE LIFE IS JUST IN A TOTAL SHAMBLE HAS A DAY OR TWO OF NORMALCY. THAT'S THE GREATEST GIFT YOU CAN GIVE THEM IS TO KNOW THAT THEY'RE CARED FOR. >> I THINK TO LET HIM KNOW THAT HE'S LOVED, AND HE'S NOT A BURDEN. WE PULL TOGETHER. I'M GETTING EMOTIONAL THINKING ABOUT IT, BUT THAT'S REALLY IMPORTANT TO US, I THINK. >> SHE'S A PLEASURE TO BE WITH. >> I WANT TO CHECK IN ON HER FOR MYSELF AND I ALSO WANT TO SAY HI FOR HER. >> I DO IT BECAUSE I AM HER CAREGIVER. IT'S DEFINITELY PART OF MY IDENTITY. >> IT'S NOT ABOUT WHETHER THEY'LL REMEMBER, IT'S I'LL REMEMBER. AND FOR ME, IT COMPLETES ME. >> WE ALWAYS DEPENDED ON HER. YOU KNOW, THAT'S JUST THE TRUTH. SO NOW, YOU KNOW, WE GOT TO DO THIS, IT'S THE ONLY RIGHT THING TO DO. YOU KNOW, YOU CAN'T JUST BAIL OUT, AND THAT'S THE WAY WE FEEL. WE GOT TO DO THIS. >> THERE'S ASPECTS OF WHO SHE IS, THE KIND OF WOMAN SHE WAS, THAT PEOPLE CAN STILL CONNECT WITH. MY CAREGIVERS LOVE HER. SHE CAN BE SO FUNNY. SHE'LL GO UP TO A KID AND SHE'LL CUDDLE WITH THEIR LITTLE FEET AND SHE'LL SAY, HELLO SUGAR FOOT. SHE'S STILL THERE. SPEND AS MUCH TIME WITH THE PERSON AS YOU CAN. IT MIGHT BE REALLY HARD TO SEE THEM LIKE THAT. IN THE LONG RUN YOU'LL END UP REGRETTING IT IF YOU DON'T. >> CHERISH ALL YOUR MOMENTS THAT YOU HAVE WITH THEM AND MAKE SURE YOU REMEMBER THEM. >> OH. >> YOU CAUGHT IT. [LAUGHTER] >> LOOK, IT'S SNOWING. >> YEAH. [♪♪♪] >> WHAT WE'VE LEARNED IS THAT NO ONE HAS THE ANSWERS FOR US. IT'S AN EVER CHANGING STORY BECAUSE TOMORROW DON WILL BE DIFFERENT AND I KNOW THAT, AND THAT'S OKAY. THAT HOLDING OF THE HAND, AND THAT JUST REASSURANCE THAT YOU'RE THERE FOR THEM THEY CAN FEEL THAT LOVE AND THEY DON'T NEED YOUR WORDS 100 PERCENT OF THE TIME; ALL THEY NEED TO KNOW IS THAT YOU'RE THERE FOR THEM. YOU'RE NOT GOING TO LEAVE THEM AND THAT THEY'RE LOVED. [♪♪♪] CAPTIONING PROVIDED BY:
CAPTION ASSOCIATES, LLC
WWW.CAPTIONASSOCIATES.COM T >>R>> IT'S A C RP KEEP THE PACE, DON' ALONE BECAUSE SUPPORT YOU NEED, FOR YOU TO SUCCEED. CAREGIVERS JOIN US TO SUPPORT THE COMMUNITY. YOU CAN LEARN MORE FROM THE MAJORITY. IT'S EASY TO FIND THE PORT ONLINE, STAY OUT OF THE MORGUE, GO TO CLINIC.ORG. THIS IS THE LONG GOODBYE. IT'S OKAY TO CRY. THIS IS A MYSTERY, LET'S ERASE IT FROM HISTORY. [♪♪♪]
