1 00:00:05,400 --> 00:00:08,000 THANK YOU FOR JOINING US TODAY. 2 00:00:08,000 --> 00:00:12,200 ON BEHALF OF OUR FEDERAL 3 00:00:12,200 --> 00:00:13,840 PARTNERS I WOULD LIKE IS TO 4 00:00:13,840 --> 00:00:15,080 WELCOME YOU TO OUR WEBINAR 5 00:00:15,080 --> 00:00:17,480 SERIES. 6 00:00:17,480 --> 00:00:19,520 I WILL BE YOUR MODERATOR TODAY. 7 00:00:19,520 --> 00:00:23,800 THIS WEBINAR IS A SERIES -- IS A 8 00:00:23,800 --> 00:00:25,920 JOINT FEDERAL PROJECT OF FEDERAL 9 00:00:25,920 --> 00:00:27,920 AGENCIES THAT SUPPORTS HEALTH 10 00:00:27,920 --> 00:00:29,840 AND WELLNESS IN OLDER ADULTS 11 00:00:29,840 --> 00:00:31,040 ACROSS THE UNITED STATES. 12 00:00:31,040 --> 00:00:33,360 THE PARTNER AGENCIES ARE THE 13 00:00:33,360 --> 00:00:34,760 ADMINISTRATION FOR COMMUNITY 14 00:00:34,760 --> 00:00:36,600 LIVING, THE AGENCY FOR HEALTH 15 00:00:36,600 --> 00:00:38,000 CARE AND RESEARCH QUALITY. 16 00:00:38,000 --> 00:00:40,240 THE OFFICE OF THE ASSISTANT 17 00:00:40,240 --> 00:00:41,960 SECRETARY FOR PLANNING AND 18 00:00:41,960 --> 00:00:43,160 EVALUATION. 19 00:00:43,160 --> 00:00:44,840 THE CDC. 20 00:00:44,840 --> 00:00:48,360 THE CENTERS FOR MEDICARE AND 21 00:00:48,360 --> 00:00:51,880 MEDICAID SERVICES, THE INDIAN 22 00:00:51,880 --> 00:00:55,320 HEALTH SERVICE, THE NATIONAL 23 00:00:55,320 --> 00:00:58,320 INSTITUTE ON AGING WITHIN THE 24 00:00:58,320 --> 00:01:00,640 NIH AND THE DEPARTMENT OF 25 00:01:00,640 --> 00:01:01,920 VETERANS AFFAIRS. 26 00:01:01,920 --> 00:01:04,360 YOU'LL SEE THE LOGOS ACROSS THE 27 00:01:04,360 --> 00:01:06,040 BOTTOM OF THE SCREEN. 28 00:01:06,040 --> 00:01:11,000 NEXT SLIDE, PLEASE. 29 00:01:11,000 --> 00:01:16,720 OUR DISCUSSION TODAY WILL BE ON 30 00:01:16,720 --> 00:01:18,160 RESILIENCE IN CAREGIVING. 31 00:01:18,160 --> 00:01:24,200 I'M NOT GOING TO READ OUT ALL OF 32 00:01:24,200 --> 00:01:25,080 THE NAMES OF THE PRESENTATIONS 33 00:01:25,080 --> 00:01:28,400 THAT WE'RE GOING TO HEAR TODAY 34 00:01:28,400 --> 00:01:30,720 BUT I WANT TO INTRODUCE YOU TO 35 00:01:30,720 --> 00:01:32,680 OUR PANELISTS. 36 00:01:32,680 --> 00:01:41,480 WE HAVE LORETTA VENEY. 37 00:01:41,480 --> 00:01:52,320 ENTITLED FROM DECEMBER SPARE TOO 38 00:01:55,400 --> 00:01:57,120 RESILIENCE. 39 00:01:57,120 --> 00:02:00,160 DR. YUANJIN ZHOU. 40 00:02:00,160 --> 00:02:02,960 DR. FAWN COCHRAN AND DIANA 41 00:02:02,960 --> 00:02:07,560 SHULLA COSE. 42 00:02:07,560 --> 00:02:11,160 JUST A COUPLE OF HOUSEKEEPING 43 00:02:11,160 --> 00:02:11,520 ITEMS. 44 00:02:11,520 --> 00:02:13,800 WE'RE GOING TO HAVE A 45 00:02:13,800 --> 00:02:14,880 QUESTION-AND-ANSWER SESSION 46 00:02:14,880 --> 00:02:16,920 AFTER ALL OF THE PANELISTS HAVE 47 00:02:16,920 --> 00:02:17,920 COMPLETED THEIR PRESENTATIONS. 48 00:02:17,920 --> 00:02:20,000 IF YOU WOULD LIKE TO SEND IN A 49 00:02:20,000 --> 00:02:23,840 QUESTION PLEASE SEND IN ON THE 50 00:02:23,840 --> 00:02:27,040 CLICK LIVE FEEDBACK BUTTON. 51 00:02:27,040 --> 00:02:29,040 THAT WILL GET THE QUESTION TO US 52 00:02:29,040 --> 00:02:31,160 AND THEN WE'LL BE ABLE TO ANSWER 53 00:02:31,160 --> 00:02:33,160 AS MANY AS WE CAN AT THE END OF 54 00:02:33,160 --> 00:02:34,240 THE PRESENTATIONS. 55 00:02:34,240 --> 00:02:35,920 WITH THAT, LET'S GET TO OUR 56 00:02:35,920 --> 00:02:37,360 FIRST SPEAKER. 57 00:02:37,360 --> 00:02:40,920 I'D LIKE TO INTRODUCE LORETTA 58 00:02:40,920 --> 00:02:42,040 VENEY. 59 00:02:42,040 --> 00:02:45,160 >>THANK YOU SO MUCH, ERIN FOR 60 00:02:45,160 --> 00:02:48,360 HAVING ME TODAY AND FOR 61 00:02:48,360 --> 00:02:49,280 INTRODUCING ME. 62 00:02:49,280 --> 00:02:51,600 I'M ABSOLUTELY THRILLED TO BE 63 00:02:51,600 --> 00:02:54,840 HERE WITH YOU ALL TODAY TO TALK 64 00:02:54,840 --> 00:02:56,320 ABOUT FROM DESPAIR TO 65 00:02:56,320 --> 00:02:56,720 RESILIENCE. 66 00:02:56,720 --> 00:02:59,440 AND I HOPE YOU'RE GOING TO ENJOY 67 00:02:59,440 --> 00:03:02,400 FOUR OF THE GREATEST LESSONS I 68 00:03:02,400 --> 00:03:05,760 LEARNED FROM BEING MY MOM'S MOM. 69 00:03:05,760 --> 00:03:10,960 I WANT TO INTRODUCE YOU TO 70 00:03:10,960 --> 00:03:11,600 MS. DORIS. 71 00:03:11,600 --> 00:03:14,600 WE'RE DOING A SELFIE AND ONE OF 72 00:03:14,600 --> 00:03:16,400 THE FAVORITE THINGS THAT I LOVE 73 00:03:16,400 --> 00:03:18,160 TO REMEMBER IS SHE IS LOOKING AT 74 00:03:18,160 --> 00:03:20,880 THE SCREEN AND SHE IS SAYING HOW 75 00:03:20,880 --> 00:03:23,200 DID WE GET INTO THAT BOX? 76 00:03:23,200 --> 00:03:27,560 JUST LIKE THAT AND TO THIS DAY I 77 00:03:27,560 --> 00:03:28,600 LAUGH ABOUT THAT. 78 00:03:28,600 --> 00:03:31,280 SHE DIED IN JANUARY OF LAST 79 00:03:31,280 --> 00:03:33,000 YEAR. 80 00:03:33,000 --> 00:03:38,120 2022. 81 00:03:38,120 --> 00:03:42,280 FIRST LESSON: LEARN EVERYTHING 82 00:03:42,280 --> 00:03:46,200 YOU CAN ABOUT THIS DISEASE AND 83 00:03:46,200 --> 00:03:49,120 ADVOCATE, ADVOCATE, ADVOCATE FOR 84 00:03:49,120 --> 00:03:53,680 YOUR LOVED ONE. 85 00:03:53,680 --> 00:03:55,400 THOSE ARE THE FACTS AND FIGURES 86 00:03:55,400 --> 00:03:59,680 AND WHEN I TELL YOU I LEARNED 87 00:03:59,680 --> 00:04:01,520 EVERYTHING I FELT LIKE I WAS 88 00:04:01,520 --> 00:04:06,720 BACK IN GRADUATE SCHOOL. 89 00:04:06,720 --> 00:04:08,960 IT WAS MY NUMBER ONE GOAL TO 90 00:04:08,960 --> 00:04:10,520 LEARN EVERYTHING ABOUT IT. 91 00:04:10,520 --> 00:04:13,040 AND ALSO ABOUT MULTIPLE 92 00:04:13,040 --> 00:04:13,280 SCLEROSIS. 93 00:04:13,280 --> 00:04:15,080 MY SISTER WAS DIAGNOSED TWO 94 00:04:15,080 --> 00:04:18,080 WEEKS AFTER MY MOM WAS DIAGNOSED 95 00:04:18,080 --> 00:04:20,200 WITH DEMENTIA. 96 00:04:20,200 --> 00:04:23,320 MY MOM WAS 77 YEARS OLD WHEN SHE 97 00:04:23,320 --> 00:04:25,600 WAS DIAGNOSED. 98 00:04:25,600 --> 00:04:28,400 SO 16 YEARS FOR US WITH THAT 99 00:04:28,400 --> 00:04:31,480 CRAZY DISEASE. 100 00:04:31,480 --> 00:04:33,560 IT'S ABOUT READING EVERYTHING 101 00:04:33,560 --> 00:04:35,000 THAT YOU CAN GET YOUR HANDS ON. 102 00:04:35,000 --> 00:04:38,880 THIS IS AARP PREPARE TO CARE. 103 00:04:38,880 --> 00:04:41,760 IT HAD CHECKLISTS. 104 00:04:41,760 --> 00:04:43,480 ADDRESSES, PHONE NUMBERS AND 105 00:04:43,480 --> 00:04:44,040 WEBSITES. 106 00:04:44,040 --> 00:04:45,760 I WROTE IN AND DID EVERYTHING I 107 00:04:45,760 --> 00:04:46,480 COULD DO. 108 00:04:46,480 --> 00:04:48,280 AND THE OTHER THING THAT WAS 109 00:04:48,280 --> 00:04:53,120 INTERESTING FOR ME IS IN 2013 WE 110 00:04:53,120 --> 00:04:56,800 WERE WELL INTO THE DISEASE I 111 00:04:56,800 --> 00:05:00,360 DECIDED TO WRITE THIS BOOK ABOUT 112 00:05:00,360 --> 00:05:01,800 MY JOURNEY. 113 00:05:01,800 --> 00:05:04,320 IT ALSO HELPED TO PAY FOR HER 114 00:05:04,320 --> 00:05:07,080 CARE BECAUSE I WAS TERRIFIED AT 115 00:05:07,080 --> 00:05:09,200 77 THAT SHE WOULD OUT LIVE MY 116 00:05:09,200 --> 00:05:10,840 MOMMY SO I WANTED TO MAKE SURE 117 00:05:10,840 --> 00:05:11,760 WE HAD THAT. 118 00:05:11,760 --> 00:05:15,000 BUT I WAS HOPING TO AND SHE 119 00:05:15,000 --> 00:05:17,240 BEING THE FIRST ONE IN OUR 120 00:05:17,240 --> 00:05:19,440 FAMILY TO BE DIAGNOSED WITH THIS 121 00:05:19,440 --> 00:05:21,320 DISEASE I WANTED TO MAKE SURE 122 00:05:21,320 --> 00:05:23,480 OTHER FAMILIES WERE NOT AS 123 00:05:23,480 --> 00:05:24,520 UNPREPARED AS WE WERE. 124 00:05:24,520 --> 00:05:26,280 WE ENDED UP ON THE "NEW YORK 125 00:05:26,280 --> 00:05:28,520 TIMES" AND I WAS SO PROUD TO 126 00:05:28,520 --> 00:05:31,000 HAVE OUR BOOK RECOMMENDED AS 127 00:05:31,000 --> 00:05:32,560 SOMETHING FOR OLDER CARE THAT 128 00:05:32,560 --> 00:05:34,520 WAS REALLY HELPFUL. 129 00:05:34,520 --> 00:05:39,280 NOW, HERE IS THE ADVOCACY PART. 130 00:05:39,280 --> 00:05:44,680 MY MOTHER BROKE HER CLAVICLE 131 00:05:44,680 --> 00:05:47,840 DURING A FALL AND THEY WANTED 132 00:05:47,840 --> 00:05:52,280 HER TO COME TO THE HOSPITAL IN A 133 00:05:52,280 --> 00:05:53,840 WHEELCHAIR AND THAT REQUIRED 134 00:05:53,840 --> 00:05:55,000 MEDICAL TRANS SPORT. 135 00:05:55,000 --> 00:05:57,520 DURING COVID I CALLED TO SEE HOW 136 00:05:57,520 --> 00:06:00,960 MUCH IT WOULD COST. 137 00:06:00,960 --> 00:06:01,160 $400. 138 00:06:01,160 --> 00:06:04,080 WE WERE NOT GOING TO DO $400. 139 00:06:04,080 --> 00:06:06,760 AND SO I ADVOCATED FOR HER. 140 00:06:06,760 --> 00:06:09,400 ITSELF WAS UPSET ABOUT IT AND I 141 00:06:09,400 --> 00:06:11,800 GOT A RIDE WITH THE GROUP HOME 142 00:06:11,800 --> 00:06:12,800 WHERE SHE LIVED. 143 00:06:12,800 --> 00:06:17,240 THEY TOOK US ON THE ACTIVITY BUS 144 00:06:17,240 --> 00:06:20,560 BUT I WROTE ALL KINDS OF LETTERS 145 00:06:20,560 --> 00:06:21,600 ABOUT THAT. 146 00:06:21,600 --> 00:06:23,400 THEY SAID IT WAS THE CLEANING 147 00:06:23,400 --> 00:06:23,800 FEE. 148 00:06:23,800 --> 00:06:26,880 I COULD HAVE CLEANED THE ENTIRE 149 00:06:26,880 --> 00:06:29,680 CITY I LIVED IN FOR $400 BUT 150 00:06:29,680 --> 00:06:31,320 THAT IS ANOTHER STORY. 151 00:06:31,320 --> 00:06:34,320 PLEASE NEVER BE AFRAID TO FIRE A 152 00:06:34,320 --> 00:06:37,400 DOCTOR IF NECESSARY. 153 00:06:37,400 --> 00:06:40,280 MY MOTHER'S FIRST NEUROLOGIST 154 00:06:40,280 --> 00:06:42,280 SAID YOU ARE IN THE BEGINNING 155 00:06:42,280 --> 00:06:44,400 STAGES OF DEMENTIA. 156 00:06:44,400 --> 00:06:47,800 HE NEVER MADE EYE CONTACT OR 157 00:06:47,800 --> 00:06:48,200 ANYTHING. 158 00:06:48,200 --> 00:06:50,600 SHE DIDN'T WANT TO TAKE ANOTHER 159 00:06:50,600 --> 00:06:53,240 MEDICINE AND SHE WAS TRYING TO 160 00:06:53,240 --> 00:06:57,440 PRESCRIBE AND PUSH THE 161 00:06:57,440 --> 00:06:58,240 PRESCRIPTION ACROSS THE TABLE 162 00:06:58,240 --> 00:07:01,240 AND BY THE THIRD TIME SHE SAID I 163 00:07:01,240 --> 00:07:04,120 DON'T WANT TO TAKE THAT. 164 00:07:04,120 --> 00:07:05,560 HE SAID THAT IS WHAT IS WRONG 165 00:07:05,560 --> 00:07:10,800 WITH YOU PEOPLE. 166 00:07:10,800 --> 00:07:13,720 Z YOU JUST WANT TO COMPLAIN. 167 00:07:13,720 --> 00:07:16,080 WE NEVER SAW HIM AGAIN. 168 00:07:16,080 --> 00:07:20,480 SO SWITCH DOCTORS IF YOU FEEL 169 00:07:20,480 --> 00:07:24,600 THAT YOU'RE NOT BEING HEARD. 170 00:07:24,600 --> 00:07:27,440 GO WITH SOMEBODY WITH WOMAN YOU 171 00:07:27,440 --> 00:07:29,680 CAN FEEL COMFORTABLE WITH. 172 00:07:29,680 --> 00:07:31,800 THAT IS LESSON NUMBER ONE. 173 00:07:31,800 --> 00:07:33,680 NUMBER TWO, PREPARE FOR 174 00:07:33,680 --> 00:07:34,440 EVERYTHING. 175 00:07:34,440 --> 00:07:34,640 YEAH. 176 00:07:34,640 --> 00:07:36,320 BE READY FOR ANYTHING. 177 00:07:36,320 --> 00:07:38,600 THE PHOTO ON THE LEFT MY MOTHER 178 00:07:38,600 --> 00:07:42,040 IS ON THE BACK ROW WITH MY 179 00:07:42,040 --> 00:07:42,400 GRANDPARENTS. 180 00:07:42,400 --> 00:07:44,800 SHE WAS 13. 181 00:07:44,800 --> 00:07:49,600 I PUT AT LEAST 700 PHOTOS ON MY 182 00:07:49,600 --> 00:07:53,800 PHONE FROM WHEN HE WAS BORN 183 00:07:53,800 --> 00:07:55,280 UNTIL 1949. 184 00:07:55,280 --> 00:07:58,240 I USED THOSE PHOTOS TO KEEP HER 185 00:07:58,240 --> 00:07:59,960 CALM IN THE CAR. 186 00:07:59,960 --> 00:08:00,800 DC, TRAFFIC. 187 00:08:00,800 --> 00:08:01,640 THINK THAT. 188 00:08:01,640 --> 00:08:03,840 AND TOLD HER HOW TO SWIPE AND 189 00:08:03,840 --> 00:08:05,520 THE PICTURES WOULD SCROLL BY. 190 00:08:05,520 --> 00:08:07,120 IT WAS AMAZING. 191 00:08:07,120 --> 00:08:10,120 SHE WOULD NAME PEOPLE I NEVER 192 00:08:10,120 --> 00:08:12,240 HEARD OF AND IT WAS A WONDERFUL 193 00:08:12,240 --> 00:08:14,120 WAY TO KEEP HER CALM AND 194 00:08:14,120 --> 00:08:15,400 RELAXED. 195 00:08:15,400 --> 00:08:16,760 THIS IS FUNNY. 196 00:08:16,760 --> 00:08:20,160 THIS WAS EASTER YEARS AGO. 197 00:08:20,160 --> 00:08:26,200 MY GRANDDAUGHTER WAS -- 11 AND 198 00:08:26,200 --> 00:08:29,680 THIS WAS THE FIRST PICTURE THAT 199 00:08:29,680 --> 00:08:32,800 WE TOOK WHEN MY MOM WAS GETTING 200 00:08:32,800 --> 00:08:34,640 FEISTY ABOUT FOOD. 201 00:08:34,640 --> 00:08:36,840 SHE SAID I WOULD LIKE A PIECE OF 202 00:08:36,840 --> 00:08:43,320 CAKE AND WE SAID I WANT A PIECE 203 00:08:43,320 --> 00:08:45,280 OF CAKE. 204 00:08:45,280 --> 00:08:48,720 SHE JUST HAD A PIECE OF CAKE. 205 00:08:48,720 --> 00:08:50,560 SO WHATEVER IT TAKES. 206 00:08:50,560 --> 00:08:53,480 EVERY TIME WE TOOK A PICTURE -- 207 00:08:53,480 --> 00:08:56,000 WHILE SHE WAS EATING AND THEN 208 00:08:56,000 --> 00:08:59,000 AFTER THE EATING AND AN EMPTY 209 00:08:59,000 --> 00:09:01,120 PLATE AND WE WOULD SHOW HER THE 210 00:09:01,120 --> 00:09:01,520 PICTURE. 211 00:09:01,520 --> 00:09:04,240 SHE WOULD LOOK -- SHE HAS THE 212 00:09:04,240 --> 00:09:07,120 SAME OUTFIT ON AND SHE WOULD SAY 213 00:09:07,120 --> 00:09:09,680 I GUESS I DID HAVE CAKE. 214 00:09:09,680 --> 00:09:11,840 WELL DID I LIKE THE CAKE SO YOU 215 00:09:11,840 --> 00:09:14,480 HAVE TO LEARN THOSE KIND OF 216 00:09:14,480 --> 00:09:16,480 TRICKS TO KEEP THE ARGUING DOWN 217 00:09:16,480 --> 00:09:18,360 AND COME UP WITH STRATEGIES THAT 218 00:09:18,360 --> 00:09:20,440 WORK FOR YOU. 219 00:09:20,440 --> 00:09:23,080 NOW I'M A REALIST. 220 00:09:23,080 --> 00:09:25,640 ONE OF THE HARDEST THINGS IS NOT 221 00:09:25,640 --> 00:09:27,560 ONLY WHEN THEY FORGET WHO YOU 222 00:09:27,560 --> 00:09:29,560 ARE BUT BARELY REMEMBER WHO THEY 223 00:09:29,560 --> 00:09:29,960 ARE. 224 00:09:29,960 --> 00:09:32,000 THAT IS ONE OF THE SADDEST 225 00:09:32,000 --> 00:09:33,640 MOTHER'S DAY PICTURES EVER. 226 00:09:33,640 --> 00:09:35,920 SHE HAS NO IDEA WHERE SHE IS. 227 00:09:35,920 --> 00:09:38,040 THAT IS HEARTBREAKING BUT IT IS 228 00:09:38,040 --> 00:09:40,760 PART OF THE PROCESS. 229 00:09:40,760 --> 00:09:42,880 SHE DID COME AROUND A LITTLE BIT 230 00:09:42,880 --> 00:09:45,680 AND KEPT READING HER MOTHER'S 231 00:09:45,680 --> 00:09:46,920 DAY CARD OUT LOUD. 232 00:09:46,920 --> 00:09:49,520 SO WAIT FOR THOSE BAD TIMES TO 233 00:09:49,520 --> 00:09:52,080 PASS BUT BE READY BECAUSE IT 234 00:09:52,080 --> 00:09:53,680 DOESN'T FEEL GOOD. 235 00:09:53,680 --> 00:09:55,920 WHO KNEW MY MOTHER WOULD RUN 236 00:09:55,920 --> 00:09:56,440 OFF? 237 00:09:56,440 --> 00:09:59,640 WE WERE BORN AND RAISED IN 238 00:09:59,640 --> 00:10:00,680 WASHINGTON, D.C. 239 00:10:00,680 --> 00:10:02,880 BUT BECAUSE I COULD NOT AFFORD 240 00:10:02,880 --> 00:10:08,240 ANYTHING I MOVED TO PRINCE 241 00:10:08,240 --> 00:10:09,840 COUNTY GEORGE'S MARYLAND. 242 00:10:09,840 --> 00:10:13,720 SHE TRIED TO RUN BACK. 243 00:10:13,720 --> 00:10:16,240 MY MOTHER WON'T RUN OFF. 244 00:10:16,240 --> 00:10:18,560 THEY NEVER WONDER UNTIL THEY DO 245 00:10:18,560 --> 00:10:19,720 SO BE READY. 246 00:10:19,720 --> 00:10:24,560 NOW, SAME LESSON BUT LOOK AT THE 247 00:10:24,560 --> 00:10:25,200 LAST SLIDE. 248 00:10:25,200 --> 00:10:27,360 HAVE A PLAN AND A BACK UP PLAN. 249 00:10:27,360 --> 00:10:30,160 THAT MAN IN THAT PICTURE -- THAT 250 00:10:30,160 --> 00:10:32,960 WAS MOTHER'S DAY OF 2016. 251 00:10:32,960 --> 00:10:35,040 IT WAS THE LAST PICTURE OF THE 252 00:10:35,040 --> 00:10:37,000 THREE OF US TOGETHER. 253 00:10:37,000 --> 00:10:39,360 AND WHILE WE WERE ON VACATION IN 254 00:10:39,360 --> 00:10:42,280 NEW YORK MY HUSBAND DIED VERY 255 00:10:42,280 --> 00:10:42,680 SUDDENLY. 256 00:10:42,680 --> 00:10:45,120 THE MOST SHOCKING THING EVER. 257 00:10:45,120 --> 00:10:47,120 WHO WOULD THINK YOUR SPOUSE 258 00:10:47,120 --> 00:10:49,400 WOULD OUT LIVE YOUR PARENT. 259 00:10:49,400 --> 00:10:51,680 FOR WHOM MY HUSBAND DID ALMOST 260 00:10:51,680 --> 00:10:52,280 EVERYTHING. 261 00:10:52,280 --> 00:10:54,680 SHE WAS A RETIRED DC COP. 262 00:10:54,680 --> 00:10:56,560 HE WOULD DRIVE MY MOTHER TO THE 263 00:10:56,560 --> 00:10:59,640 DOCTOR AND THEN THEY WOULD RUN 264 00:10:59,640 --> 00:11:02,240 OFF TO LUNCH AND SHOPPING. 265 00:11:02,240 --> 00:11:04,080 THEY WERE IN SEPARABLE. 266 00:11:04,080 --> 00:11:06,520 AND I DID NOT HAVE A BACK UP 267 00:11:06,520 --> 00:11:08,520 PLAN. 268 00:11:08,520 --> 00:11:10,520 THANKFULLY MY CHURCH STARTED UP 269 00:11:10,520 --> 00:11:13,320 A SUPPORT GROUP FOR ME. 270 00:11:13,320 --> 00:11:16,000 EACH OF THEM TOOK A THING. 271 00:11:16,000 --> 00:11:18,680 SO PLEASE HAVE A VILLAGE. 272 00:11:18,680 --> 00:11:20,720 NOT TRYING TO DO EVERYTHING BY 273 00:11:20,720 --> 00:11:22,400 YOURSELF AND KNOW WHO YOU CAN 274 00:11:22,400 --> 00:11:24,200 CALL IN YOUR VILLAGE. 275 00:11:24,200 --> 00:11:27,840 MY SISTER DIED FROM MS ON 276 00:11:27,840 --> 00:11:30,160 JULY 17th OF 2011 AND FIVE 277 00:11:30,160 --> 00:11:33,600 YEARS LATER MY HOUSE HUSBAND 278 00:11:33,600 --> 00:11:37,440 DIED ON THE SAME DAY. 279 00:11:37,440 --> 00:11:40,360 THIS IS A GPS FOR THE SHOE. 280 00:11:40,360 --> 00:11:42,360 MY MOTHER KEPT RUNNING SO THE 281 00:11:42,360 --> 00:11:45,000 SECOND TIME I HAD TO PUT A GPS 282 00:11:45,000 --> 00:11:47,800 IN HER SHOE. 283 00:11:47,800 --> 00:11:49,200 INVESTIGATE WHAT YOU'RE GOING TO 284 00:11:49,200 --> 00:11:49,880 NEED NEXT. 285 00:11:49,880 --> 00:11:51,680 YOU MIGHT HAVE EVERYTHING THAT 286 00:11:51,680 --> 00:11:53,240 YOU NEED BUT SOMETHING ELSE IS 287 00:11:53,240 --> 00:11:55,440 COMING SO WE PUT THAT THING IN 288 00:11:55,440 --> 00:11:57,080 HER SHOE. 289 00:11:57,080 --> 00:12:00,720 BUT IT WAS AMAZING AND IT TRACKS 290 00:12:00,720 --> 00:12:02,080 YOU TO THE INCH OF WHERE THEY 291 00:12:02,080 --> 00:12:03,520 ARE STANDING. 292 00:12:03,520 --> 00:12:06,120 SO YOU SET IT UP AND IF THEY 293 00:12:06,120 --> 00:12:08,360 CROSSOVER THE THRESHOLD. 294 00:12:08,360 --> 00:12:11,560 AND SHE WENT OUTSIDE AND THEY 295 00:12:11,560 --> 00:12:13,360 HADN'T CALLED TO SAY THEY WERE 296 00:12:13,360 --> 00:12:15,760 GOING OUT FOR ICE CREAM YOUR 297 00:12:15,760 --> 00:12:17,800 PHONE WOULD VIBRATE. 298 00:12:17,800 --> 00:12:25,640 KIND OF PRI PRICE -- PRISE. 299 00:12:25,640 --> 00:12:28,200 BUT I CREPT WELL. 300 00:12:28,200 --> 00:12:30,520 IT MUST HAVE A FABULOUS CELL 301 00:12:30,520 --> 00:12:33,080 PHONE SERVICE. 302 00:12:33,080 --> 00:12:36,080 THIS WAS A HEARTBREAKING THING. 303 00:12:36,080 --> 00:12:41,240 MY MOM'S 92nd BIRTHDAY. 304 00:12:41,240 --> 00:12:42,640 IT WAS SAD. 305 00:12:42,640 --> 00:12:47,640 THAT WAS DURING COVID. 306 00:12:47,640 --> 00:12:50,520 I TURNED 92 IN A QUARANTINE AND 307 00:12:50,520 --> 00:12:52,760 NONE OF YOU ARE INVITED TO MY 308 00:12:52,760 --> 00:12:55,920 PARTY SO SHE IS READING THE CARD 309 00:12:55,920 --> 00:12:59,240 AND I WATCHED THEM EAT CAKE FROM 310 00:12:59,240 --> 00:12:59,760 OUTSIDE. 311 00:12:59,760 --> 00:13:02,720 IF I HAD KNOWN THAT WAS MY MOM'S 312 00:13:02,720 --> 00:13:04,960 LAST BIRTHDAY PROBABLY NOT MUCH 313 00:13:04,960 --> 00:13:06,760 I COULD CHANGE BUT I DID 314 00:13:06,760 --> 00:13:08,800 EVERYTHING I COULD. 315 00:13:08,800 --> 00:13:10,280 SO PLEASE REMEMBER TO HAVE A 316 00:13:10,280 --> 00:13:12,520 PLAN AND A BACK UP PLAN. 317 00:13:12,520 --> 00:13:14,360 LESSON NUMBER TWO. 318 00:13:14,360 --> 00:13:16,840 ALL RIGHT. 319 00:13:16,840 --> 00:13:19,800 LESSON NUMBER THREE ... FOCUS ON 320 00:13:19,800 --> 00:13:22,200 WHAT THEY CAN STILL DO. 321 00:13:22,200 --> 00:13:24,080 AND ALL OF THE SUPPORT GROUPS 322 00:13:24,080 --> 00:13:26,600 THAT I HELP MODERATE, MY MOM 323 00:13:26,600 --> 00:13:28,960 CAN'T DO THIS ANY MORE OR HE 324 00:13:28,960 --> 00:13:31,080 USED TO BE ABLE TO DO THAT. 325 00:13:31,080 --> 00:13:32,840 YOU WILL DRIVE YOURSELF 326 00:13:32,840 --> 00:13:35,240 ABSOLUTELY CRAZY. 327 00:13:35,240 --> 00:13:36,880 COUNTING ALL OF THE THINGS THEY 328 00:13:36,880 --> 00:13:38,280 CAN NO LONGER DO. 329 00:13:38,280 --> 00:13:41,280 I CHOSE TO FLIP THAT AROUND AND 330 00:13:41,280 --> 00:13:43,240 CHOOSE WHAT SHE COULD STILL DO. 331 00:13:43,240 --> 00:13:46,960 ONE OF THE FUNNEST THINGS -- 332 00:13:46,960 --> 00:13:49,280 THIS IS FROM MY MOM'S HIGH 333 00:13:49,280 --> 00:13:50,240 SCHOOL YEARBOOK. 334 00:13:50,240 --> 00:13:52,680 SHE IS ON THE RIGHT WITH THE 335 00:13:52,680 --> 00:13:54,840 DARK SWEATER. 336 00:13:54,840 --> 00:13:57,200 THE "NEW YORK TIMES" HAD COME TO 337 00:13:57,200 --> 00:14:01,360 INTERVIEW US AND THEY WANTED TO 338 00:14:01,360 --> 00:14:03,360 SEE MY MOTHER WAY AFTER SHE 339 00:14:03,360 --> 00:14:06,480 FORGOT WHO I WAS. 340 00:14:06,480 --> 00:14:09,160 SHE IS NAMING BECKY AND SUSIE 341 00:14:09,160 --> 00:14:10,720 AND JOANNE. 342 00:14:10,720 --> 00:14:12,840 IF YOU LOOK CAREFULLY THERE IS A 343 00:14:12,840 --> 00:14:15,080 BOY. 344 00:14:15,080 --> 00:14:17,920 SO SHE SKIPS HIM. 345 00:14:17,920 --> 00:14:19,240 THE "NEW YORK TIMES" GUY SAYS 346 00:14:19,240 --> 00:14:20,520 WHO IS THAT? 347 00:14:20,520 --> 00:14:22,760 SHE SAID I DON'T KNOW. 348 00:14:22,760 --> 00:14:24,000 WE WERE NOT FRIENDS. 349 00:14:24,000 --> 00:14:25,880 YOU KNEW THE REST OF THEM BUT 350 00:14:25,880 --> 00:14:27,160 YOU DON'T KNOW HIM. 351 00:14:27,160 --> 00:14:28,960 SHE SAID NO. 352 00:14:28,960 --> 00:14:30,880 I DON'T KNOW WHY HE WANTED TO BE 353 00:14:30,880 --> 00:14:33,520 IN A CLUB WITH ALL GIRLS. 354 00:14:33,520 --> 00:14:36,240 THIS IS SELECTIVE DEMENTIA SO 355 00:14:36,240 --> 00:14:38,360 SHE CLEARLY NEW THE BOY IN THE 356 00:14:38,360 --> 00:14:40,160 BACK BECAUSE THAT BOY IS MY 357 00:14:40,160 --> 00:14:41,120 FATHER. 358 00:14:41,120 --> 00:14:44,080 SO SHE GORE GOT ALL ABOUT BEING 359 00:14:44,080 --> 00:14:50,480 MARRIED AND HAVING KIDS. 360 00:14:50,480 --> 00:14:51,680 AARP SITE. 361 00:14:51,680 --> 00:14:53,240 THEY GIVE NAMES TO ALL OF THEIR 362 00:14:53,240 --> 00:14:55,240 CARE GIVER PROFILES. 363 00:14:55,240 --> 00:14:58,240 THEY NAME ME THE ENTERTAINMENT 364 00:14:58,240 --> 00:14:58,680 DIRECTOR. 365 00:14:58,680 --> 00:15:02,480 BECAUSE I WAS NOT GOING TO TAKE 366 00:15:02,480 --> 00:15:04,760 THAT BLANK SLATE OF DEMENTIA. 367 00:15:04,760 --> 00:15:08,360 I GOT ONE OF THE PICTURE GAMES. 368 00:15:08,360 --> 00:15:12,000 AND FOR HER 90th BIRTHDAY WE 369 00:15:12,000 --> 00:15:15,040 PUBLISHED A COLORING BOOK. 370 00:15:15,040 --> 00:15:19,560 WHO PUBLISHES A COLORING BOOK 371 00:15:19,560 --> 00:15:21,480 BUT THERE WE ARE. 372 00:15:21,480 --> 00:15:22,920 SHE WAS FEISTY. 373 00:15:22,920 --> 00:15:25,000 YOU CAN SEE THE CHAIR LIFT. 374 00:15:25,000 --> 00:15:27,920 BUT SHE WAS LIKE I WANT TO GO UP 375 00:15:27,920 --> 00:15:32,680 BY -- MYSELF. 376 00:15:32,680 --> 00:15:34,680 SO WHEN THEY SENT ME THAT 377 00:15:34,680 --> 00:15:37,440 PICTURE -- WE WERE GETTING READY 378 00:15:37,440 --> 00:15:40,600 TO GO TO A DOCTOR'S APPOINTMENT. 379 00:15:40,600 --> 00:15:42,960 I WAS HAVING A BAD DAY AND I 380 00:15:42,960 --> 00:15:44,760 WATCHED HER PULL HERSELF UP AND 381 00:15:44,760 --> 00:15:47,000 WE NAMED HER WONDER WOMAN. 382 00:15:47,000 --> 00:15:48,880 SHE WAS SUCH A THING AND YOU CAN 383 00:15:48,880 --> 00:15:50,600 SEE HER WRITING HER NAME. 384 00:15:50,600 --> 00:15:52,680 THAT WAS TWO MONTHS BEFORE SHE 385 00:15:52,680 --> 00:15:53,680 DIED. 386 00:15:53,680 --> 00:15:57,960 IT TOOK HER 45 MINUTES BUT SHE 387 00:15:57,960 --> 00:16:02,920 COULD STILL DO IT. 388 00:16:02,920 --> 00:16:05,160 LOOK AT HER FACE. 389 00:16:05,160 --> 00:16:07,840 HOLDING IT UP AND LOOKING AT HER 390 00:16:07,840 --> 00:16:08,200 NAME. 391 00:16:08,200 --> 00:16:10,800 I'M A LEGO FACILITATOR. 392 00:16:10,800 --> 00:16:12,600 THAT IS A LONG STORY. 393 00:16:12,600 --> 00:16:15,960 I MADE HER A LOT OF LEGO PUZZLES 394 00:16:15,960 --> 00:16:18,840 AND SHE WAS MATCHING THEM UP AND 395 00:16:18,840 --> 00:16:20,800 WE HAD A LOT OF FUN. 396 00:16:20,800 --> 00:16:26,800 FOCUS ON WHAT THEY CAN STILL DO. 397 00:16:26,800 --> 00:16:30,360 THIS LAST PIECE I THINK IS SO 398 00:16:30,360 --> 00:16:31,600 INTERESTING AND PEOPLE ALWAYS 399 00:16:31,600 --> 00:16:36,120 ASK ME TO EXPLAIN IT AND WHAT DO 400 00:16:36,120 --> 00:16:38,360 I MEAN BY HAVING NO 401 00:16:38,360 --> 00:16:38,960 EXPECTATIONS. 402 00:16:38,960 --> 00:16:40,360 WHO KNEW OUR JOURNEY WAS GOING 403 00:16:40,360 --> 00:16:41,600 TO BE 16 YEARS? 404 00:16:41,600 --> 00:16:43,680 RIGHT? 405 00:16:43,680 --> 00:16:45,880 SO WHEN I SAY HAVE NO 406 00:16:45,880 --> 00:16:48,400 EXPECTATIONS WHAT DOES THAT 407 00:16:48,400 --> 00:16:49,600 MEAN? 408 00:16:49,600 --> 00:16:51,720 WE HAVE TO PACE OURSELVES 409 00:16:51,720 --> 00:16:53,600 BECAUSE IF YOU DO TOO HIGH WHEN 410 00:16:53,600 --> 00:16:54,680 THINGS GO WELL. 411 00:16:54,680 --> 00:16:57,680 YOU CAN CELEBRATE SOME BUT DON'T 412 00:16:57,680 --> 00:17:00,760 GET WAY TO HIGH OR REALLY TOO 413 00:17:00,760 --> 00:17:03,000 LOW WHEN THINGS GO BAD. 414 00:17:03,000 --> 00:17:07,680 KEEP YOURSELF ON THIS EVEN KEEL. 415 00:17:07,680 --> 00:17:10,280 STAY WITHIN SOME CONFINES. 416 00:17:10,280 --> 00:17:11,720 AND SO YOU CAN IMAGINE WHERE 417 00:17:11,720 --> 00:17:13,440 THIS SLIDE IS GOING. 418 00:17:13,440 --> 00:17:15,120 THE POLICE CAR IS IN FRONT OF 419 00:17:15,120 --> 00:17:16,720 THE GROUP HOME. 420 00:17:16,720 --> 00:17:18,640 SHE RAN OFF. 421 00:17:18,640 --> 00:17:19,920 TIME NUMBER THREE. 422 00:17:19,920 --> 00:17:24,160 AND SHE GOT ABOUT A MILE. 423 00:17:24,160 --> 00:17:27,360 AND ONE OF THE DEADLIEST 424 00:17:27,360 --> 00:17:27,640 HIGHWAYS. 425 00:17:27,640 --> 00:17:31,280 MY MOTHER GOT ACROSS ALL FOUR 426 00:17:31,280 --> 00:17:33,480 LANES WITHOUT GETTING HIT BY A 427 00:17:33,480 --> 00:17:35,680 CAR AND FAMILY FOUND HER. 428 00:17:35,680 --> 00:17:38,320 AND SHE GETS IN THEIR CAR AND 429 00:17:38,320 --> 00:17:40,720 THEY ASK HERITABLE NAME. 430 00:17:40,720 --> 00:17:42,440 SHE KNEW HER NAME. 431 00:17:42,440 --> 00:17:45,320 CAN WE CALL SOMEBODY FOR YOU? 432 00:17:45,320 --> 00:17:46,800 I DON'T KNOW. 433 00:17:46,800 --> 00:17:48,760 SO THEY GAVE HER SOME WATER AND 434 00:17:48,760 --> 00:17:51,520 A COOKIE AND FOR THE FIRST TIME 435 00:17:51,520 --> 00:17:53,800 IN FIVE YEARS. 436 00:17:53,800 --> 00:17:56,320 MY MOTHER SAYS LORETTA. 437 00:17:56,320 --> 00:17:59,080 WHO IS LORETTA. 438 00:17:59,080 --> 00:18:00,680 I DON'T KNOW. 439 00:18:00,680 --> 00:18:04,120 THE YOUNG GIRL WHO WAS WITH HER 440 00:18:04,120 --> 00:18:07,480 MOM SHE GOOGLES LORETTA IN 441 00:18:07,480 --> 00:18:09,520 MARYLAND AND LOOK AT WHAT SHE 442 00:18:09,520 --> 00:18:09,720 GETS. 443 00:18:09,720 --> 00:18:11,520 THIS IS THE WASHINGTON POST 444 00:18:11,520 --> 00:18:11,720 ARTICLE. 445 00:18:11,720 --> 00:18:14,080 THAT IS THEM RIGHT THERE. 446 00:18:14,080 --> 00:18:16,520 SO MY WHOLE NAME IS ON THERE. 447 00:18:16,520 --> 00:18:19,400 SO SHE SENDS ME A FACEBOOK 448 00:18:19,400 --> 00:18:19,640 MESSAGE. 449 00:18:19,640 --> 00:18:22,400 I THINK I'VE GOT YOUR MAMA. 450 00:18:22,400 --> 00:18:24,560 WHO KNEW YOU COULD GET YOUR 451 00:18:24,560 --> 00:18:27,160 MAMMA BACK ON FACEBOOK? 452 00:18:27,160 --> 00:18:29,000 SO WE JUMPED AROUND AND THAT WAS 453 00:18:29,000 --> 00:18:31,040 THE LAST TIME SHE RANA WAY. 454 00:18:31,040 --> 00:18:35,240 IF I TOLD YOU THIS WAS A * 455 00:18:35,240 --> 00:18:37,360 LIFETIME MOVIE YOU WOULD SAY I 456 00:18:37,360 --> 00:18:39,080 MADE IT UP. 457 00:18:39,080 --> 00:18:41,880 BUT THAT IS WHY I HAVE NO 458 00:18:41,880 --> 00:18:43,120 EXPECTATIONS. 459 00:18:43,120 --> 00:18:45,360 I HAD LOST MY MOTHER ONCE OR 460 00:18:45,360 --> 00:18:47,040 TWICE IN WALMART. 461 00:18:47,040 --> 00:18:49,240 IF YOU TURNED YOUR HEAD MY 462 00:18:49,240 --> 00:18:51,560 MOTHER WAS SO FAST SHE WOULD 463 00:18:51,560 --> 00:18:52,560 DASH OFF. 464 00:18:52,560 --> 00:18:54,560 PACE YOURSELF. 465 00:18:54,560 --> 00:18:56,800 SO SHE IS. 466 00:18:56,800 --> 00:19:00,280 ICE CREAM WAS HER FAVORITE FOOD. 467 00:19:00,280 --> 00:19:03,720 AND WE NAMED HER WONDER WOMAN 468 00:19:03,720 --> 00:19:07,600 BECAUSE IN MARCH 2021 THEY TOLD 469 00:19:07,600 --> 00:19:09,520 ME SHE HAD DAYS TO LIVE. 470 00:19:09,520 --> 00:19:11,720 SHE WAS STILL HERE FOR MOTHER'S 471 00:19:11,720 --> 00:19:15,360 DAY SO WE NAMED HER WONDER 472 00:19:15,360 --> 00:19:15,800 WOMAN. 473 00:19:15,800 --> 00:19:17,920 SHE LIVED 10 MONTHS SO I WAS SO 474 00:19:17,920 --> 00:19:18,520 PROUD OF THAT. 475 00:19:18,520 --> 00:19:21,240 THIS IS THE DAY SHE DIED. 476 00:19:21,240 --> 00:19:24,320 WE PUT THOSE WONDER WOMAN SOCKS 477 00:19:24,320 --> 00:19:26,560 ON HER. 478 00:19:26,560 --> 00:19:28,160 SHE EARNED THOSE SOCKS AND SHE 479 00:19:28,160 --> 00:19:30,680 WAS THE BEST MOM EVER SO IT WAS 480 00:19:30,680 --> 00:19:33,000 ABOUT PACING OURSELVES TO THE 481 00:19:33,000 --> 00:19:35,040 END BUT IT WAS AMAZING. 482 00:19:35,040 --> 00:19:36,720 SO WHAT I REALLY WANT TO LEAVE 483 00:19:36,720 --> 00:19:39,800 YOU WITH AND I HOPE YOU ENJOYED 484 00:19:39,800 --> 00:19:41,480 OUR FAMILY STORY. 485 00:19:41,480 --> 00:19:45,240 WE WENT FROM A DESPAIR TO 486 00:19:45,240 --> 00:19:48,320 RESILIENCE TO MAKING THE MOST OF 487 00:19:48,320 --> 00:19:49,920 EVERY DAY WE HAVE. 488 00:19:49,920 --> 00:19:51,960 NEVER FORGET YOU'VE GOT THIS. 489 00:19:51,960 --> 00:19:56,320 THANK YOU SO MUCH. 490 00:19:56,320 --> 00:20:00,240 >>THANK YOU, SO MUCH, LORETTA. 491 00:20:00,240 --> 00:20:03,840 NEXT WE'RE GOING TO HEAR FROM 492 00:20:03,840 --> 00:20:08,120 DR. ZHOU. 493 00:20:08,120 --> 00:20:09,840 >>HI, EVERYONE. 494 00:20:09,840 --> 00:20:12,360 IT'S MY GREAT HONOR TO JOIN THE 495 00:20:12,360 --> 00:20:14,720 GREAT PANEL TODAY AND MEET YOU 496 00:20:14,720 --> 00:20:14,880 ALL. 497 00:20:14,880 --> 00:20:16,720 THANK YOU LORETTA FOR SHARING 498 00:20:16,720 --> 00:20:19,400 YOUR EXPERIENCES AND GIVING US A 499 00:20:19,400 --> 00:20:21,520 GREAT DEMONSTRATION. 500 00:20:21,520 --> 00:20:23,880 AND TODAY I WOULD LIKE TO 501 00:20:23,880 --> 00:20:25,760 INTRODUCE OUR RESEARCH TEAMS. 502 00:20:25,760 --> 00:20:29,320 DURING THE LAST SEVEN YEARS AGO. 503 00:20:29,320 --> 00:20:31,440 WHAT RESILIENCE MEANS FOR THE 504 00:20:31,440 --> 00:20:33,160 DEMENTIA CARE PARTNERS AND HOW 505 00:20:33,160 --> 00:20:35,280 WE SHOULD DEFINE AND MEASURE IT. 506 00:20:35,280 --> 00:20:37,920 I'VE LEARNED SO MUCH WITH THE 507 00:20:37,920 --> 00:20:41,120 CARE PARTNERS I'VE WORKED WITH 508 00:20:41,120 --> 00:20:42,600 AND I CONTINUE LEARNING FROM 509 00:20:42,600 --> 00:20:44,800 THEM AND I WOULD LIKE TO SHARE 510 00:20:44,800 --> 00:20:46,640 MY MESSAGE AS WELL. 511 00:20:46,640 --> 00:20:49,040 I HAVE NO COMMERCIAL 512 00:20:49,040 --> 00:20:51,280 RELATIONSHIPS TO DISCLOSE AND 513 00:20:51,280 --> 00:20:54,280 THIS IS THE MEMBERS OF THE OUR 514 00:20:54,280 --> 00:20:55,400 RESILIENCE TEAM. 515 00:20:55,400 --> 00:20:57,640 SO FIRST I WANT TO TALK ABOUT 516 00:20:57,640 --> 00:21:00,800 WHY OUR TEAM STARTED TO FOCUS ON 517 00:21:00,800 --> 00:21:02,440 RESILIENCE FOR THE DEMENTIA CARE 518 00:21:02,440 --> 00:21:03,200 PARTNERS. 519 00:21:03,200 --> 00:21:06,160 WE'VE HEARD A LOT ABOUT HOW MANY 520 00:21:06,160 --> 00:21:07,680 CHALLENGES THEY HAVE TO HANDLE 521 00:21:07,680 --> 00:21:08,480 EVERY DAY. 522 00:21:08,480 --> 00:21:11,800 THEY'VE PROVIDED SO MUCH: THEY 523 00:21:11,800 --> 00:21:13,800 HAVE PROVIDED DIRECT CARE AND 524 00:21:13,800 --> 00:21:15,440 HEALTH MANAGEMENT FOR PEOPLE 525 00:21:15,440 --> 00:21:17,720 LIVING WITH DEMENTIA. 526 00:21:17,720 --> 00:21:20,440 THESE EFFORTS CAN MAKE A 527 00:21:20,440 --> 00:21:22,840 POSITIVE IMPACT. 528 00:21:22,840 --> 00:21:24,640 HOWEVER, THERE ARE MANY STUDIES 529 00:21:24,640 --> 00:21:26,280 SHOWING THAT CAREGIVING CAN BE 530 00:21:26,280 --> 00:21:30,840 VERY TAXING AND MIGHT AFFECT THE 531 00:21:30,840 --> 00:21:33,720 HEALTH AND WELL-BEING OF THE 532 00:21:33,720 --> 00:21:35,080 CARE PARTNER. 533 00:21:35,080 --> 00:21:37,520 PEOPLE LIVING WITH DEMENTIA 534 00:21:37,520 --> 00:21:41,160 SUFFER AT THE SAME TIME. 535 00:21:41,160 --> 00:21:44,200 CURRENT INTERVENTIONS FOR 536 00:21:44,200 --> 00:21:47,880 DEMENTIA CARE PARTNER MANY FOCUS 537 00:21:47,880 --> 00:21:51,880 ON THE STRESS OR THE BURDEN. 538 00:21:51,880 --> 00:21:58,040 HOWEVER THERE ARE LIMITATIONS. 539 00:21:58,040 --> 00:22:00,080 THEY OFTEN REACH A CRISIS POINT. 540 00:22:00,080 --> 00:22:02,080 THE SERVICES TEND TO BE 541 00:22:02,080 --> 00:22:05,440 SHORT-TERM RELIEF SUCH AS RESPID 542 00:22:05,440 --> 00:22:07,320 CARE, COUNSELING AND THIS 543 00:22:07,320 --> 00:22:09,520 APPROACH HAS LIMITED EFFECTS IN 544 00:22:09,520 --> 00:22:12,600 PREVENTING OR RELIEVING THIS 545 00:22:12,600 --> 00:22:14,200 LONG-TERM BURDEN. 546 00:22:14,200 --> 00:22:16,200 THERE IS A GROWING INTEREST IN 547 00:22:16,200 --> 00:22:26,640 DEVELOPING INTERVENTIONS. 548 00:22:29,640 --> 00:22:32,760 AND WHILE RESILIENCE. 549 00:22:32,760 --> 00:22:34,760 A FOCUS ON THE STRENGTHS AND AND 550 00:22:34,760 --> 00:22:36,880 THE ABILITY FOR THEM TO RECOVER 551 00:22:36,880 --> 00:22:37,920 FROM STRESSFUL SITUATION. 552 00:22:37,920 --> 00:22:40,920 THERE ARE MANY STUDIES THAT SHOW 553 00:22:40,920 --> 00:22:43,360 THAT RESILIENCE HAS STRONG 554 00:22:43,360 --> 00:22:46,360 PROTECTIVE FACTORS. 555 00:22:46,360 --> 00:22:48,040 RESILIENCE COULD BE A NEW 556 00:22:48,040 --> 00:22:50,160 INTERVENTION TARGET TO 557 00:22:50,160 --> 00:22:51,400 DEVELOPING SUPPORT. 558 00:22:51,400 --> 00:22:53,760 IN THAT WAY WE MAY BE ABLE TO 559 00:22:53,760 --> 00:22:55,400 PREVENT THEM FROM VARIOUS 560 00:22:55,400 --> 00:22:57,960 NEGATIVE IMPACT OF CAREGIVING 561 00:22:57,960 --> 00:22:59,960 RATHER THAN ADDRESSING THEM WHEN 562 00:22:59,960 --> 00:23:01,360 IT'S TOO LATE. 563 00:23:01,360 --> 00:23:02,800 WE FIRST NEED TO UNDERSTAND WHAT 564 00:23:02,800 --> 00:23:06,680 IT MEANS IN A CONTEXT OF THE 565 00:23:06,680 --> 00:23:08,280 CAREGIVING. 566 00:23:08,280 --> 00:23:11,080 THERE ARE MANY MEASURES THAT CAN 567 00:23:11,080 --> 00:23:13,520 INDICATE STRESS AND BURDEN. 568 00:23:13,520 --> 00:23:17,720 THE LACK OF RESILIENCE MEASURED 569 00:23:17,720 --> 00:23:23,040 AND VALIDATED. 570 00:23:23,040 --> 00:23:28,560 ALTHOUGH -- THIS WAS A CONSTRUCT 571 00:23:28,560 --> 00:23:33,880 SUCH AS BEING PERSEVERANT. 572 00:23:33,880 --> 00:23:36,200 BUT IT MAY REQUIRE DIFFERENT 573 00:23:36,200 --> 00:23:36,600 THINGS. 574 00:23:36,600 --> 00:23:39,320 SOME CAREGIVERS TOLD ME THEY 575 00:23:39,320 --> 00:23:41,360 WERE FOCUSED ONLY ON PROBLEM 576 00:23:41,360 --> 00:23:43,160 SOLVING AND THAT CAN MAKE THEM 577 00:23:43,160 --> 00:23:45,160 BURN OUT AND MAKE IT HARDER TO 578 00:23:45,160 --> 00:23:47,120 ASK OR RECEIVE SUPPORT. 579 00:23:47,120 --> 00:23:50,080 SO WHAT RESILIENCE MEANS IS A 580 00:23:50,080 --> 00:23:51,760 CONTEXT OF THE DEMENTIA 581 00:23:51,760 --> 00:23:52,040 CAREGIVING. 582 00:23:52,040 --> 00:23:54,520 THIS IS THE FIRST QUESTION OUR 583 00:23:54,520 --> 00:23:56,520 TEAM TRIED TO ADDRESS. 584 00:23:56,520 --> 00:23:59,520 SO TO BETTER UNDERSTAND HOW TO 585 00:23:59,520 --> 00:24:01,760 CONCEPTUALIZE AND MEASURE OUR 586 00:24:01,760 --> 00:24:04,080 TEAM HAS CONDUCTED A SCOPING 587 00:24:04,080 --> 00:24:06,640 REVIEW AND PROPOSED A UNIFYING 588 00:24:06,640 --> 00:24:08,040 MODEL TO RESILIENCE. 589 00:24:08,040 --> 00:24:10,800 INSTEAD OF THINKING ABOUT THE 590 00:24:10,800 --> 00:24:12,400 INDIVIDUAL TRAITS WE THINK ABOUT 591 00:24:12,400 --> 00:24:14,840 IT AS A PROCESS THROUGH WHICH 592 00:24:14,840 --> 00:24:21,000 THE CARE PARTNER UTILIZE THIS 593 00:24:21,000 --> 00:24:23,280 AND ACHIEVE RESILIENCE OUTCOME. 594 00:24:23,280 --> 00:24:27,680 THIS OUTCOME -- IS RELATED TO 595 00:24:27,680 --> 00:24:29,200 ADVERSITY AND ALSO PERSONAL 596 00:24:29,200 --> 00:24:33,880 GROWTH AND DEVELOPMENT. 597 00:24:33,880 --> 00:24:36,280 HOW CAN WE DEVELOP 598 00:24:36,280 --> 00:24:37,680 INTERVENTIONS? 599 00:24:37,680 --> 00:24:40,240 THIS PROCESS IS ESPECIALLY 600 00:24:40,240 --> 00:24:44,480 CRITICAL AS IT IS MULTIPLABLE. 601 00:24:44,480 --> 00:24:47,040 AND PROMOTING POSITIVE OUTCOMES. 602 00:24:47,040 --> 00:24:49,680 TO CAPTURE THIS PROCESS ONE 603 00:24:49,680 --> 00:24:51,160 POSSIBLE WAY IS TO CAPTURE WHAT 604 00:24:51,160 --> 00:24:52,680 I DO. 605 00:24:52,680 --> 00:24:56,400 THE CARE GIVER'S BEHAVIOR CAN BE 606 00:24:56,400 --> 00:24:58,520 USED AS A GOOD TARGET FOR 607 00:24:58,520 --> 00:25:01,200 INTERVENTION. 608 00:25:01,200 --> 00:25:03,840 HOWEVER WE DID NOT KNOW WHAT 609 00:25:03,840 --> 00:25:05,280 BEHAVIOR CAN INDICATE RESILIENCE 610 00:25:05,280 --> 00:25:06,800 IN THE FIRST PLACE. 611 00:25:06,800 --> 00:25:11,800 SO IDENTIFY THE INDICATORS WE 612 00:25:11,800 --> 00:25:14,120 CONDUCTED A LITERATURE REVIEW 613 00:25:14,120 --> 00:25:16,160 TRYING TO FIGURE OUT. 614 00:25:16,160 --> 00:25:20,840 THERE ARE FOUR TYPES. 615 00:25:20,840 --> 00:25:24,280 FIRST IS WE FOUND THE RESILIENCE 616 00:25:24,280 --> 00:25:28,000 MEANS CARE PARTNER TAKES 617 00:25:28,000 --> 00:25:29,720 APPROPRIATE ACTION. 618 00:25:29,720 --> 00:25:31,720 SOMETIMES YOU FOCUS ON SOLVING 619 00:25:31,720 --> 00:25:34,680 THE PROBLEM BUT OTHER TIMES IT 620 00:25:34,680 --> 00:25:36,560 IS BETTER TO DISTANCE THEMSELVES 621 00:25:36,560 --> 00:25:41,320 FROM THOSE PROBLEMS WHEN IT IS 622 00:25:41,320 --> 00:25:43,400 OVERWHELMING. 623 00:25:43,400 --> 00:25:45,840 HELP IS IMPORTANT. 624 00:25:45,840 --> 00:25:47,840 ACCESSING OR ACCEPTING SUPPORT 625 00:25:47,840 --> 00:25:48,800 FROM OTHERS. 626 00:25:48,800 --> 00:25:50,240 SOMETIMES IT'S HARD FOR THEM TO 627 00:25:50,240 --> 00:25:54,800 DO IT. 628 00:25:54,800 --> 00:25:57,560 BESIDES THAT WE FOUND IT 629 00:25:57,560 --> 00:25:59,600 REQUIRED THEM TO ADOPT BEHAVIOR 630 00:25:59,600 --> 00:26:02,920 TO MAINTAIN OR IMPROVE THEIR OWN 631 00:26:02,920 --> 00:26:04,640 HEALTH AND WELL-BEING. 632 00:26:04,640 --> 00:26:06,560 THROUGH CONNECTING WITH OTHERS 633 00:26:06,560 --> 00:26:08,280 INCLUDING MORE SELF-CARE 634 00:26:08,280 --> 00:26:10,320 ACTIVITIES, DEVELOPING AND 635 00:26:10,320 --> 00:26:12,640 MAINTAINING MEANINGFUL SOCIAL 636 00:26:12,640 --> 00:26:14,400 RELATIONSHIPS AND PARTICIPATING 637 00:26:14,400 --> 00:26:16,000 IN SPIRITUAL ACTIVITIES AND 638 00:26:16,000 --> 00:26:17,800 THOSE ARE VERY IMPORTANT FOR THE 639 00:26:17,800 --> 00:26:20,160 HEALTH AND WELL-BEING. 640 00:26:20,160 --> 00:26:23,240 IN THE END WE FOUND LEARNING 641 00:26:23,240 --> 00:26:25,480 RELATED BEHAVIORS ARE 642 00:26:25,480 --> 00:26:27,920 FUNDAMENTAL FOR CARE PARTNERS. 643 00:26:27,920 --> 00:26:31,520 THIS IS THE FIRST THING LORETTA 644 00:26:31,520 --> 00:26:32,080 MENTIONED. 645 00:26:32,080 --> 00:26:33,760 NOT ONLY TO LEARN FROM OTHERS 646 00:26:33,760 --> 00:26:35,320 BUT THEY HAVE TO REFLECT ON 647 00:26:35,320 --> 00:26:37,400 THEIR OWN EXPERIENCES AND 648 00:26:37,400 --> 00:26:39,320 APPLYING THEM IN CAREGIVING AND 649 00:26:39,320 --> 00:26:40,800 SEE HOW IT WORKS. 650 00:26:40,800 --> 00:26:43,000 I'M VERY EXCITED ABOUT THIS 651 00:26:43,000 --> 00:26:45,200 INITIAL FRAMEWORK BECAUSE IT CAN 652 00:26:45,200 --> 00:26:47,640 INFORM THE DEVELOPMENT OF 653 00:26:47,640 --> 00:26:48,760 MEASURES, RESEARCH AND 654 00:26:48,760 --> 00:26:50,440 INTERVENTION AND POLICIES FOR 655 00:26:50,440 --> 00:26:58,920 THE DEMENTIA CARE PARTNER. 656 00:26:58,920 --> 00:27:00,760 HOWEVER, THERE ARE LIMITATIONS. 657 00:27:00,760 --> 00:27:03,280 SO NONE OF THE REVIEW STUDIES 658 00:27:03,280 --> 00:27:07,400 HAVE EXAMINED THEIR BEHAVIORS SO 659 00:27:07,400 --> 00:27:11,960 WE ARE LIKELY TO MISS SOME. 660 00:27:11,960 --> 00:27:14,080 WE CONDUCTED ANOTHER STUDY TO 661 00:27:14,080 --> 00:27:16,080 VALIDATE AND EXPAND THIS 662 00:27:16,080 --> 00:27:20,400 BEHAVIOR FRAMEWORK. 663 00:27:20,400 --> 00:27:22,760 SO WE INTERVIEWED 27 CARE 664 00:27:22,760 --> 00:27:24,320 PARTNERS AND ASKED THEM WHAT 665 00:27:24,320 --> 00:27:27,640 THEY'VE DONE TO DEAL WITH THE 666 00:27:27,640 --> 00:27:30,080 CHALLENGES. 667 00:27:30,080 --> 00:27:32,320 AND WHAT BEHAVIOR THEY FOUND 668 00:27:32,320 --> 00:27:33,040 HELPFUL. 669 00:27:33,040 --> 00:27:36,760 SO THIS IS A CRITICAL TIME 670 00:27:36,760 --> 00:27:41,320 POINT. 671 00:27:41,320 --> 00:27:43,640 THEY PROVIDE A LOT OF USEFUL 672 00:27:43,640 --> 00:27:45,760 INFORMATION AND INSIGHTS THAT I 673 00:27:45,760 --> 00:27:51,960 WOULD LIKE TO SHARE WITH YOU. 674 00:27:51,960 --> 00:27:54,600 WE VALIDATED AND EXPANDED OUR 675 00:27:54,600 --> 00:27:55,840 REGIONAL FRAMEWORK. 676 00:27:55,840 --> 00:27:57,760 WE DID MISS SOMETHING IMPORTANT 677 00:27:57,760 --> 00:27:59,080 AND I WOULD LIKE TO POINT THEM 678 00:27:59,080 --> 00:28:02,240 OUT TO YOU. 679 00:28:02,240 --> 00:28:05,040 FIRST WE FOUND A NEW DOMAIN OF 680 00:28:05,040 --> 00:28:06,280 BEHAVIOR. 681 00:28:06,280 --> 00:28:09,520 WE MISSED IT IN THE BEGINNING. 682 00:28:09,520 --> 00:28:11,080 CALLED COMPASSION RELATED 683 00:28:11,080 --> 00:28:12,120 BEHAVIOR. 684 00:28:12,120 --> 00:28:17,760 THEY USED TO RESPOND TO -- 685 00:28:17,760 --> 00:28:20,640 RELIEVE OTHER'S SUFFERING. 686 00:28:20,640 --> 00:28:23,760 A LOT OF TIMES THOSE BEHAVIORS 687 00:28:23,760 --> 00:28:26,760 ARE VIEWED AS BEING HARMFUL FOR 688 00:28:26,760 --> 00:28:27,360 CAREGIVERS. 689 00:28:27,360 --> 00:28:30,920 BUT CARE GIVER TOLD ME NO. 690 00:28:30,920 --> 00:28:32,480 BE ABLE TO SACRIFICE THEMSELVES 691 00:28:32,480 --> 00:28:34,040 AND SHOWING LOVE AND COMMITMENT 692 00:28:34,040 --> 00:28:35,720 AND CARING FOR THE PEOPLE WITH 693 00:28:35,720 --> 00:28:37,720 DEMENTIA AND MANY OTHER FAMILIES 694 00:28:37,720 --> 00:28:40,160 IS NOT ONLY CRITICAL FOR THE 695 00:28:40,160 --> 00:28:41,440 WELL-BEING OF THE PEOPLE LIVING 696 00:28:41,440 --> 00:28:45,720 WITH DEMENTIA BUT ALSO PROVIDE 697 00:28:45,720 --> 00:28:46,720 GREAT SATISFACTION FOR 698 00:28:46,720 --> 00:28:47,120 THEMSELVES. 699 00:28:47,120 --> 00:28:50,600 THEY FEEL THEY ARE CAPABLE OF 700 00:28:50,600 --> 00:28:52,600 TAKING CARE OF PEOPLE LIVING 701 00:28:52,600 --> 00:28:55,160 WITH DEMENTIA AND OTHER FAMILY 702 00:28:55,160 --> 00:28:57,040 MEMBERS THAT SUFFER AS WELL. 703 00:28:57,040 --> 00:28:59,080 WE ALSO FOUND THAT THEY HAVE 704 00:28:59,080 --> 00:29:04,480 GREAT WISDOM. 705 00:29:04,480 --> 00:29:08,160 BESIDES SOLVING OR AVOIDING THE 706 00:29:08,160 --> 00:29:09,240 PROBLEMS IT IS VERY IMPORTANT TO 707 00:29:09,240 --> 00:29:11,960 BE ABLE TO STOP AND WATCH, 708 00:29:11,960 --> 00:29:13,920 OBSERVE HOW THE PROBLEMATIC 709 00:29:13,920 --> 00:29:15,720 SITUATION EVOLVED AND CHANGED 710 00:29:15,720 --> 00:29:17,920 AND THEN MAKE DECISIONS. 711 00:29:17,920 --> 00:29:20,160 IT IS IMPORTANT TO ACCEPT THINGS 712 00:29:20,160 --> 00:29:21,800 THAT ARE OUT OF CONTROL AND MOVE 713 00:29:21,800 --> 00:29:23,480 ON TO OTHER THINGS THAT THEY ARE 714 00:29:23,480 --> 00:29:26,280 ABLE TO IMPROVE. 715 00:29:26,280 --> 00:29:30,480 THIS NONJUDGMENTAL -- EXPERIENCE 716 00:29:30,480 --> 00:29:32,440 IS SHOWING TO BE CRITICAL FOR 717 00:29:32,440 --> 00:29:35,360 CARE PARTNERS TO MAKE THE RIGHT 718 00:29:35,360 --> 00:29:36,880 DECISIONS FOR THEMSELVES AND THE 719 00:29:36,880 --> 00:29:38,920 PEOPLE THAT THEY CARE FOR. 720 00:29:38,920 --> 00:29:42,840 IN THE END WE FOUND THAT 721 00:29:42,840 --> 00:29:45,600 RESILIENT CAR PARTNERS KNOW WHAT 722 00:29:45,600 --> 00:29:47,280 THEY WANT AND DON'T WANT. 723 00:29:47,280 --> 00:29:50,600 SOMETIMES IT CAN BE DISTURBING, 724 00:29:50,600 --> 00:29:53,360 BURDENSOME AND INTRUSIVE. 725 00:29:53,360 --> 00:29:56,480 CARE PARTNERS HAVE TO BE ABLE TO 726 00:29:56,480 --> 00:29:58,960 SAY NO IN THESE SITUATIONS. 727 00:29:58,960 --> 00:30:00,760 THEY ARE COMPETENT AND 728 00:30:00,760 --> 00:30:02,960 KNOWLEDGEABLE EXPERTS AND THEN 729 00:30:02,960 --> 00:30:04,600 RECOGNIZE THEIR RIGHT TO CHOOSE 730 00:30:04,600 --> 00:30:07,600 OR REJECT UNWANTED OR INTRUSIVE 731 00:30:07,600 --> 00:30:09,200 HELP. 732 00:30:09,200 --> 00:30:11,120 ALSO VIEWED AS OPPORTUNITY FOR 733 00:30:11,120 --> 00:30:13,320 OTHER FAMILY AND FRIENDS AND 734 00:30:13,320 --> 00:30:18,600 CARE PROVIDERS TO REASSESS WHAT 735 00:30:18,600 --> 00:30:22,120 IS NEEDED. 736 00:30:22,120 --> 00:30:24,320 I WOULD LIKE TO SHARE AN EXAMPLE 737 00:30:24,320 --> 00:30:29,280 FROM AN INTERVIEW ABOUT A 738 00:30:29,280 --> 00:30:31,560 RESILIENT CARE PARTNER AND JASON 739 00:30:31,560 --> 00:30:34,040 IS A 20-YEAR-OLD BLACK MAN WHO 740 00:30:34,040 --> 00:30:36,800 HAS BEEN CARING FOR HIS FATHER 741 00:30:36,800 --> 00:30:38,920 FOR FOUR YEARS. 742 00:30:38,920 --> 00:30:43,800 HE WAS NOT DIAGNOSED OR WAS NOT 743 00:30:43,800 --> 00:30:46,800 SHARED WITH JASON UNTIL THE 744 00:30:46,800 --> 00:30:53,280 HEALTH CRISIS. 745 00:30:53,280 --> 00:30:57,480 THE MAIN CHALLENGES IS FIRST 746 00:30:57,480 --> 00:30:58,800 NAVIGATING THE HEALTH CARE 747 00:30:58,800 --> 00:30:59,040 SYSTEM. 748 00:30:59,040 --> 00:31:02,320 THEY HAVE TO ACCESS THE SERVICES 749 00:31:02,320 --> 00:31:05,520 FROM LONG DISTANCE AND HE 750 00:31:05,520 --> 00:31:07,600 STRUGGLED WITH HOW TO 751 00:31:07,600 --> 00:31:08,560 COMMUNICATE. 752 00:31:08,560 --> 00:31:13,440 HE ALSO FACED THE CHALLENGES OF 753 00:31:13,440 --> 00:31:18,640 MANAGING HIS OWN FEARS. 754 00:31:18,640 --> 00:31:20,840 LET'S SEE WHAT JASON HAS DONE. 755 00:31:20,840 --> 00:31:24,280 FIRST HE EMPHASIZED HE DECIDED 756 00:31:24,280 --> 00:31:26,280 TO PUT HIS DAD'S CARE OVER 757 00:31:26,280 --> 00:31:27,320 EVERYTHING ELSE. 758 00:31:27,320 --> 00:31:29,200 HE TRIED TO BE STRONG NOT ONLY 759 00:31:29,200 --> 00:31:31,000 FOR HIMSELF AND HIS DAD BUT ALSO 760 00:31:31,000 --> 00:31:32,680 FOR THE REST OF THE FAMILY WHO 761 00:31:32,680 --> 00:31:35,920 ARE ALSO VERY SAD AND WORRIED. 762 00:31:35,920 --> 00:31:38,120 HE TRIED TO SOLVE THE PROBLEM BY 763 00:31:38,120 --> 00:31:41,120 LOOKING FOR A CLOSER SERVICE 764 00:31:41,120 --> 00:31:41,520 PROVIDER. 765 00:31:41,520 --> 00:31:43,600 HE ASKED FOR HELP IN TRYING TO 766 00:31:43,600 --> 00:31:45,400 LEARN HOW TO CARE FOR HIS 767 00:31:45,400 --> 00:31:45,800 FATHER. 768 00:31:45,800 --> 00:31:48,000 HE ALSO RECEIVED HELP OFFERED BY 769 00:31:48,000 --> 00:31:53,720 OTHER FAMILY MEMBERS. 770 00:31:53,720 --> 00:31:56,440 HE FELT REALLY OVERWHELMED. 771 00:31:56,440 --> 00:31:58,440 HE WOULD GO OUT FOR A WALK AND 772 00:31:58,440 --> 00:32:01,280 HE PRAYED AND TALKED TO GOD 773 00:32:01,280 --> 00:32:03,640 ABOUT HIS FEAR. 774 00:32:03,640 --> 00:32:05,640 THROUGH TALKING WITH SERVICE 775 00:32:05,640 --> 00:32:07,200 PROVIDERS HE LEARNED HOW TO 776 00:32:07,200 --> 00:32:10,320 MONITOR AND PREVENT UTI. 777 00:32:10,320 --> 00:32:14,320 HE ALSO REFLECTED ON HOW HIS DAD 778 00:32:14,320 --> 00:32:19,800 TAUGHT HIM ABOUT LIFE AND FIND 779 00:32:19,800 --> 00:32:23,840 PEACE. 780 00:32:23,840 --> 00:32:27,280 JASON SHOWED HOW THESE BEHAVIORS 781 00:32:27,280 --> 00:32:29,640 -- MADE HIM FEEL GROWN UP. 782 00:32:29,640 --> 00:32:31,640 HE FELT HE WAS ABLE TO TAKE CARE 783 00:32:31,640 --> 00:32:34,880 OF HIS FAMILY AND HE FELT HE WAS 784 00:32:34,880 --> 00:32:38,240 A LESS SELFISH PERSON. 785 00:32:38,240 --> 00:32:42,000 NOT EVERYONE WAS LIKE JASON. 786 00:32:42,000 --> 00:32:44,920 WE DEFINED CARE PARTNERS THAT 787 00:32:44,920 --> 00:32:47,880 ONLY ADOPTED SOME BEHAVIORS AND 788 00:32:47,880 --> 00:32:50,160 NOT OTHERS. 789 00:32:50,160 --> 00:32:52,160 THEREFORE DIFFERENT CARE 790 00:32:52,160 --> 00:32:55,920 PARTNERS MAY REQUIRE DIFFERENT 791 00:32:55,920 --> 00:33:05,480 RESILIENCY -- OVER-ALL OUR 792 00:33:05,480 --> 00:33:08,680 FINDINGS PROVIDE A COMPREHENSIVE 793 00:33:08,680 --> 00:33:13,320 MODEL FOR BEST MEASURE. 794 00:33:13,320 --> 00:33:16,880 AND THE MEASURE CAN GUIDE FUTURE 795 00:33:16,880 --> 00:33:20,360 RESEARCH FOR US TO EXPLORE 796 00:33:20,360 --> 00:33:22,120 FACTORS SHAPING BEHAVIORS. 797 00:33:22,120 --> 00:33:24,320 WE HAVE WANT TO UNDERSTAND WHO 798 00:33:24,320 --> 00:33:26,600 IS RESILIENT AND WHY AND PEOPLE 799 00:33:26,600 --> 00:33:28,600 FROM DIFFERENT CULTURE 800 00:33:28,600 --> 00:33:31,520 BACKGROUNDS AND DIFFERENT 801 00:33:31,520 --> 00:33:36,120 SOCIOECONOMIC STATUS MAY HAVE 802 00:33:36,120 --> 00:33:43,440 DIFFERENT BEHAVIORS. 803 00:33:43,440 --> 00:33:45,960 THE NEED TO DEVELOP 804 00:33:45,960 --> 00:33:48,120 INTERVENTIONS SUCH AS 805 00:33:48,120 --> 00:33:51,040 MINDFULNESS AND COMPASSION. 806 00:33:51,040 --> 00:33:52,520 ALSO THE IMPORTANCE TO 807 00:33:52,520 --> 00:33:54,800 COLLABORATE WITH A CAR PARTNER 808 00:33:54,800 --> 00:33:58,760 TO CO-DESIGN SUPPORT PROGRAM. 809 00:33:58,760 --> 00:34:03,680 THEY ARE VALUABLE TO THE 810 00:34:03,680 --> 00:34:05,480 PROGRAM. 811 00:34:05,480 --> 00:34:07,960 AND THIS IS THE PREFERENCES FOR 812 00:34:07,960 --> 00:34:09,000 MY PRESENTATION AND THANK YOU 813 00:34:09,000 --> 00:34:12,600 VERY MUCH AND PLEASE REACH OUT 814 00:34:12,600 --> 00:34:14,680 TO ME IF YOU HAVE ANY QUESTIONS 815 00:34:14,680 --> 00:34:16,200 OR FEEDBACK ON OUR WORK. 816 00:34:16,200 --> 00:34:22,040 THANK YOU VERY MUCH. 817 00:34:22,040 --> 00:34:25,600 >>THANK YOU, VERY MUCH. 818 00:34:25,600 --> 00:34:31,360 NEXT WE'LL HEAR FROM DR. COTHRAN 819 00:34:31,360 --> 00:34:33,240 >>THANK YOU FOR THE INVITATION 820 00:34:33,240 --> 00:34:36,400 TO JOIN TODAY'S AMAZING PANEL OF 821 00:34:36,400 --> 00:34:37,000 SPEAKERS. 822 00:34:37,000 --> 00:34:41,760 I'M DELIGHTED TO SPEAK TO YOU 823 00:34:41,760 --> 00:34:42,920 TODAY. 824 00:34:42,920 --> 00:34:44,840 ALTHOUGH WE'RE IN A VIRTUAL 825 00:34:44,840 --> 00:34:46,600 FORMAT I WANT TO ACKNOWLEDGE THE 826 00:34:46,600 --> 00:34:49,040 NATIONAL ALLIANCE FOR CAREGIVING 827 00:34:49,040 --> 00:34:52,480 IS PHYSICALLY HOUSED ON THE 828 00:34:52,480 --> 00:34:57,400 TRADITIONAL LANDS OF THE -- 829 00:34:57,400 --> 00:34:58,920 PEOPLE. 830 00:34:58,920 --> 00:35:01,440 WE ARE A MEMBERSHIP BASED 831 00:35:01,440 --> 00:35:03,640 ORGANIZATION ESTABLISHED IN 832 00:35:03,640 --> 00:35:04,680 1996. 833 00:35:04,680 --> 00:35:06,240 FOCUSING ON BUILDING HEALTH, 834 00:35:06,240 --> 00:35:09,680 WEALTH AND EQUITY FOR AMERICA'S 835 00:35:09,680 --> 00:35:11,880 53 MILLION FAMILY CAREGIVERS 836 00:35:11,880 --> 00:35:13,640 ACROSS LIFE-SPAN AND CONDITION. 837 00:35:13,640 --> 00:35:16,040 WE'RE COMPRISED OF MORE THAN 60 838 00:35:16,040 --> 00:35:17,640 ORGANIZATIONS AND A NETWORK OF 839 00:35:17,640 --> 00:35:20,480 MORE THAN 80 STATE AND LOCAL 840 00:35:20,480 --> 00:35:22,080 CAREGIVING COLLISIONS AND 841 00:35:22,080 --> 00:35:24,440 CAREGIVING ADVOCATES. 842 00:35:24,440 --> 00:35:34,960 WE HAVE FOUR CORE STRATEGIES. 843 00:35:37,360 --> 00:35:40,840 OUR RESEARCH STRATEGY THROUGH 844 00:35:40,840 --> 00:35:43,480 YESTERDAY CALL, TRANSFORMATIVE 845 00:35:43,480 --> 00:35:47,480 ORIGINAL RESEARCH, AND LEADING A 846 00:35:47,480 --> 00:35:54,080 NATIONAL NET WORK. 847 00:35:54,080 --> 00:35:56,200 RESILIENCE TODAY IS THE CAPACITY 848 00:35:56,200 --> 00:35:58,960 TO ADAPT AND PERSEVERE IN THE 849 00:35:58,960 --> 00:36:01,320 FACE OF STRESS AND WITH THIS 850 00:36:01,320 --> 00:36:03,640 DEFINITION I WANT TO HIGHLIGHT 851 00:36:03,640 --> 00:36:08,600 SIX ATTRIBUTES. 852 00:36:08,600 --> 00:36:11,720 FOR THE FIRST ATTRIBUTE, 853 00:36:11,720 --> 00:36:13,520 REFRAMING. 854 00:36:13,520 --> 00:36:16,800 DESPITE MANY CHALLENGES A SENSE 855 00:36:16,800 --> 00:36:18,960 OF PURPOSE, SATISFACTION AND 856 00:36:18,960 --> 00:36:23,440 OPPORTUNITY TO RESOLVE CONFLICT 857 00:36:23,440 --> 00:36:24,840 AND STRENGTHEN RELATIONSHIPS. 858 00:36:24,840 --> 00:36:27,920 A WAY OF GIVING BACK AND 859 00:36:27,920 --> 00:36:29,360 ACKNOWLEDGE SPECIAL MOMENTS OF 860 00:36:29,360 --> 00:36:30,600 BREAKTHROUGH RECOGNITION OR 861 00:36:30,600 --> 00:36:34,720 LAUGHTER. 862 00:36:34,720 --> 00:36:39,360 DRAWING FROM OUR 2017 REPORT THE 863 00:36:39,360 --> 00:36:41,920 NEXT ATTRIBUTE IS ASKING FOR AND 864 00:36:41,920 --> 00:36:42,960 ACCEPTING HELP. 865 00:36:42,960 --> 00:36:47,800 WHEN WE COMPARE 62% OF DEMENTIA 866 00:36:47,800 --> 00:36:49,200 CAREGIVERS SHARE CAREGIVING. 867 00:36:49,200 --> 00:36:51,840 THEY ARE NOT THE SOLE CARE 868 00:36:51,840 --> 00:36:56,360 GIVER. 869 00:36:56,360 --> 00:37:01,080 45% OF DEMENTIA CAREGIVERS 870 00:37:01,080 --> 00:37:03,960 RECEIVE HELP AND THEY ARE TWICE 871 00:37:03,960 --> 00:37:08,840 AS LIKELY TO USE RESPID. 872 00:37:08,840 --> 00:37:11,280 ADDITIONALLY 37% OF DEMENTIA 873 00:37:11,280 --> 00:37:12,160 CAREGIVERS ARE REQUESTING 874 00:37:12,160 --> 00:37:15,320 FINANCIAL HELP. 875 00:37:15,320 --> 00:37:19,080 THE THIRD ATTRIBUTE USING 876 00:37:19,080 --> 00:37:21,280 RESOURCES 45% OF DEMENTIA 877 00:37:21,280 --> 00:37:22,720 CAREGIVERS ARE MODIFYING THEIR 878 00:37:22,720 --> 00:37:25,320 HOMES. 879 00:37:25,320 --> 00:37:28,640 AND 32% ARE USING TRANSPORTATION 880 00:37:28,640 --> 00:37:29,960 SERVICES FOR THEIR CARE 881 00:37:29,960 --> 00:37:32,000 RECIPIENT. 882 00:37:32,000 --> 00:37:35,240 FOR THE FOURTH ATTRIBUTE. 883 00:37:35,240 --> 00:37:35,760 WORKING. 884 00:37:35,760 --> 00:37:37,280 ALTHOUGH INDIVIDUAL REASONS WILL 885 00:37:37,280 --> 00:37:39,960 VARY SIX IN 10 CAREGIVERS ARE 886 00:37:39,960 --> 00:37:45,360 EMPLOYED AND 57% ARE FULL-TIME. 887 00:37:45,360 --> 00:37:47,760 ALONG THE LINES OF WORKING BUT 888 00:37:47,760 --> 00:37:51,480 REPRESENTING THE 5th ATTRIBUTE 889 00:37:51,480 --> 00:37:54,800 THEY ARE SPEAKING UP, 70% OF 890 00:37:54,800 --> 00:37:56,800 MAKING THEIR SUPERVISORS AWARE 891 00:37:56,800 --> 00:38:00,440 OF THEIR CAREGIVING ROLE. 892 00:38:00,440 --> 00:38:02,800 44% ARE ALSO SPEAKING UP WHEN 893 00:38:02,800 --> 00:38:04,240 BEING ASKED ABOUT WHAT THEY NEED 894 00:38:04,240 --> 00:38:06,600 TO PROVIDE CARE FOR THEIR CARE 895 00:38:06,600 --> 00:38:09,480 RECIPIENT. 896 00:38:09,480 --> 00:38:12,600 THE FINAL ATTRIBUTE THAT I SEE 897 00:38:12,600 --> 00:38:15,720 IS PLANNING FOR THE FUTURE. 898 00:38:15,720 --> 00:38:20,120 WITH 56% OF DEMENTIA CAREGIVERS 899 00:38:20,120 --> 00:38:22,920 HAVE BEEN FINANCES AND LIVING 900 00:38:22,920 --> 00:38:27,000 ARRANGEMENTS IN PLACE. 901 00:38:27,000 --> 00:38:31,360 NOW WHILE I'VE HIGHLIGHTED SIX 902 00:38:31,360 --> 00:38:33,640 ATTRIBUTES THERE ARE TWO 903 00:38:33,640 --> 00:38:35,760 IMPORTANT RESEARCH CHALLENGES TO 904 00:38:35,760 --> 00:38:36,400 HIGHLIGHT. 905 00:38:36,400 --> 00:38:39,480 ONE IS THAT THERE IS LIMITED 906 00:38:39,480 --> 00:38:41,600 OBJECTIVE DATA ON CARE GIVER 907 00:38:41,600 --> 00:38:42,920 RESILIENCE AND THE SECOND IS 908 00:38:42,920 --> 00:38:46,320 THAT PROXY MEASURES ARE THE 909 00:38:46,320 --> 00:38:50,560 CLOSEST ALTERNATIVE. 910 00:38:50,560 --> 00:38:53,560 FROM A RESEARCH PERSPECTIVE 911 00:38:53,560 --> 00:38:57,120 WITHOUT RESILIENCE MEASURES OR 912 00:38:57,120 --> 00:38:59,680 DATA WE DON'T HAVE AN ACCURATE 913 00:38:59,680 --> 00:39:01,600 PICTURE OF CARE GIVER 914 00:39:01,600 --> 00:39:01,880 RESILIENCE. 915 00:39:01,880 --> 00:39:04,120 WE DON'T KNOW WHAT WE DON'T 916 00:39:04,120 --> 00:39:04,320 KNOW. 917 00:39:04,320 --> 00:39:06,000 AND FURTHER RESEARCH IS NEEDED 918 00:39:06,000 --> 00:39:10,840 AND THIS IS WHERE THE WORK OF 919 00:39:10,840 --> 00:39:13,920 DR. ZHOU AND HER TEAM ARE 920 00:39:13,920 --> 00:39:15,680 HELPING TO FILL THE GAP. 921 00:39:15,680 --> 00:39:19,720 I DO HAVE A FEW WORDS OF 922 00:39:19,720 --> 00:39:20,280 CAUTION. 923 00:39:20,280 --> 00:39:21,840 FIRST WHILE STRESS IS A NORMAL 924 00:39:21,840 --> 00:39:24,160 FUNCTION OF LIFE WE MUST BE 925 00:39:24,160 --> 00:39:26,160 CAREFUL NOT TO OVERLOOK THE 926 00:39:26,160 --> 00:39:28,160 LONG-TERM NATURE OF DEMENTIA 927 00:39:28,160 --> 00:39:30,360 CAREGIVING AND THE PHYSICAL AND 928 00:39:30,360 --> 00:39:32,280 MENTAL HEALTH CONSEQUENCES A 929 00:39:32,280 --> 00:39:34,560 ASSOCIATED WITH CHRONIC STRESS. 930 00:39:34,560 --> 00:39:39,200 SECOND, GIVEN THE IMPACT PLUS 931 00:39:39,200 --> 00:39:42,560 THE LIMITED DioGUARDI GRAPHIC 932 00:39:42,560 --> 00:39:43,440 ACCESSIBILITY OF RESEARCH 933 00:39:43,440 --> 00:39:45,360 CENTERS DEMENTIA CAREGIVING DOES 934 00:39:45,360 --> 00:39:47,920 NOT AFFECT EVERYONE EQUALLY. 935 00:39:47,920 --> 00:39:54,680 FOR EXAMPLE, ALMOST ONE THIRD OF 936 00:39:54,680 --> 00:39:56,440 CAREGIVERS IN OUR REPORT SAY IT 937 00:39:56,440 --> 00:39:59,440 IS DIFFICULT TO FIND AFFORDABLE 938 00:39:59,440 --> 00:40:00,560 SERVICES WHERE SOCIAL 939 00:40:00,560 --> 00:40:02,040 DETERMINANTS OF HEALTH ARE ONE 940 00:40:02,040 --> 00:40:04,800 ASPECT THAT PLAY A CRITICAL ROLE 941 00:40:04,800 --> 00:40:07,800 IN THE CAREGIVING CONTEXT. 942 00:40:07,800 --> 00:40:11,240 CAREGIVERS WHO ARE WOMEN, 943 00:40:11,240 --> 00:40:13,880 LGBTQ+, BLACK, INDIGENOUS OR 944 00:40:13,880 --> 00:40:16,560 PEOPLE OF COLOR PLUS THE WIDER 945 00:40:16,560 --> 00:40:19,680 DIVERSITY WITHIN ALL OF THESE 946 00:40:19,680 --> 00:40:21,680 COMMUNITIES -- EXTENDS THE 947 00:40:21,680 --> 00:40:24,240 NUANCE COMPLEXITY AND 948 00:40:24,240 --> 00:40:24,880 INEQUALITY. 949 00:40:24,880 --> 00:40:27,120 FINALLY THE FRAMING OF 950 00:40:27,120 --> 00:40:28,480 RESILIENCE ESPECIALLY IN THE 951 00:40:28,480 --> 00:40:30,360 CONTEXT OF CAREGIVING 952 00:40:30,360 --> 00:40:33,120 CONTRIBUTES TO THE INVISIBLE, 953 00:40:33,120 --> 00:40:35,560 UNDER VALUED AND UNSUPPORTED 954 00:40:35,560 --> 00:40:38,440 LAYER OF CAREGIVERS IN OUR 955 00:40:38,440 --> 00:40:38,800 SOCIETY. 956 00:40:38,800 --> 00:40:42,440 EVEN WHILE CELEBRATING WE CANNOT 957 00:40:42,440 --> 00:40:44,440 NORMALIZE THE WORK CAREGIVERS 958 00:40:44,440 --> 00:40:47,360 UPHOLD IN OUR SOCIETY AND IGNORE 959 00:40:47,360 --> 00:40:49,840 THE NECESSARY OF ADEQUATE 960 00:40:49,840 --> 00:40:50,320 SUPPORT. 961 00:40:50,320 --> 00:40:53,080 DEMENTIA CAREGIVERS ARE MAKING A 962 00:40:53,080 --> 00:40:56,480 WAY IN STRESSFUL AND CHALLENGING 963 00:40:56,480 --> 00:41:00,320 CIRCUMSTANCES. 964 00:41:00,320 --> 00:41:05,040 CAREGIVERS NEED PAID FAMILY 965 00:41:05,040 --> 00:41:08,560 MEDICAL LEAVE -- THEY NEED 966 00:41:08,560 --> 00:41:11,560 REFUNDABLE TAX CREDITS AND 967 00:41:11,560 --> 00:41:13,560 SOCIAL SECURITY CREDITS ADDED TO 968 00:41:13,560 --> 00:41:17,960 A PERSON'S CAREER EARNINGS. 969 00:41:17,960 --> 00:41:20,120 IN ADDITION EQUITABLE EMPLOYMENT 970 00:41:20,120 --> 00:41:22,880 POLICIES AND PROTECTIONS ARE 971 00:41:22,880 --> 00:41:25,560 NEEDED GIVEN THAT OUR DATA 972 00:41:25,560 --> 00:41:28,120 HIGHLIGHTS THAT THEY HAVE 973 00:41:28,120 --> 00:41:36,360 SLIGHTLY LESS WORKPLACE BENEF 974 00:41:36,360 --> 00:41:38,040 BENEFITS. 975 00:41:38,040 --> 00:41:39,960 CAREGIVERS OFTEN RELY ON THE 976 00:41:39,960 --> 00:41:43,240 DIRECT CARE WORKFORCE INCLUDING 977 00:41:43,240 --> 00:41:47,120 RETENTION AND TRAINING -- 978 00:41:47,120 --> 00:41:48,600 ABSOLUTELY CRITICAL. 979 00:41:48,600 --> 00:41:51,160 WE MUST RECOGNIZE AND INCLUDE 980 00:41:51,160 --> 00:41:52,800 CAREGIVERS AS INTEGRAL MEMBERS 981 00:41:52,800 --> 00:41:54,440 OF THE HEALTH CARE TEAM THAT 982 00:41:54,440 --> 00:41:55,240 THEY ARE. 983 00:41:55,240 --> 00:41:59,320 USING OUR DATA WHEN 56% ARE NOT 984 00:41:59,320 --> 00:42:01,240 BEING ASKED WHAT THEY NEED TO 985 00:42:01,240 --> 00:42:04,520 PROVIDE CARE FOR THEIR CARE 986 00:42:04,520 --> 00:42:06,120 RECIPIENT THIS IS A MISSED 987 00:42:06,120 --> 00:42:08,640 OPPORTUNITY TO ENSURE CONTINUITY 988 00:42:08,640 --> 00:42:10,400 OF CARE AND THE POSITIVE 989 00:42:10,400 --> 00:42:13,760 OUTCOMES THAT ARE DESIRED. 990 00:42:13,760 --> 00:42:15,760 SO AS I WRAP UP THIS IS OUR 991 00:42:15,760 --> 00:42:19,200 REPORT THAT I USED TO GUIDE MY 992 00:42:19,200 --> 00:42:21,280 DATA THAT I PRESENTED AND SHARED 993 00:42:21,280 --> 00:42:24,120 WITH YOU TODAY. 994 00:42:24,120 --> 00:42:29,720 IT CAN BE FOUND ON OUR WEB SIZE 995 00:42:29,720 --> 00:42:31,600 WWW.CAREGIVING.ORG IF YOU ARE 996 00:42:31,600 --> 00:42:34,400 INTERESTED IN READING FURTHER. 997 00:42:34,400 --> 00:42:35,800 THANK YOU. 998 00:42:35,800 --> 00:42:37,680 AND HERE IS MY CONTACT 999 00:42:37,680 --> 00:42:38,920 INFORMATION AND OUR WEBSITE 1000 00:42:38,920 --> 00:42:43,920 AGAIN. 1001 00:42:43,920 --> 00:42:45,320 >>THANK YOU VERY MUCH, FAWN. 1002 00:42:45,320 --> 00:42:50,240 NEXT WE'RE GOING TO HEAR FROM 1003 00:42:50,240 --> 00:42:52,240 DIANA SHULLA COSE. 1004 00:42:52,240 --> 00:42:56,120 >>THANK YOU, ERWIN, ELIZABETH 1005 00:42:56,120 --> 00:42:58,960 AND TEAM -- FOR INVITING ME TO 1006 00:42:58,960 --> 00:43:01,840 SHARE PIECES OF MY OWN PERSONAL 1007 00:43:01,840 --> 00:43:05,400 STORY AND TO SHARE LIGHT ON 1008 00:43:05,400 --> 00:43:07,680 LORENZO'S HOUSE AND ALSO HONORED 1009 00:43:07,680 --> 00:43:12,400 TO BE ON THE PANEL. 1010 00:43:12,400 --> 00:43:14,720 THE SORT OF THEME OR PHILOSOPHY 1011 00:43:14,720 --> 00:43:16,160 OR PRACTICE THAT I WILL BE 1012 00:43:16,160 --> 00:43:18,760 SHINING LIGHT ON IS THIS IDEA OF 1013 00:43:18,760 --> 00:43:22,360 SHIFTING OUR MINDSET AS A CARE 1014 00:43:22,360 --> 00:43:25,600 PARTNER AND THE IDEA CAN SHIFT 1015 00:43:25,600 --> 00:43:28,320 OUR OWN NARRATIVE OF HOW WE LIVE 1016 00:43:28,320 --> 00:43:31,640 HOW WE WALK AS A FAMILY WITH 1017 00:43:31,640 --> 00:43:37,400 YOUNGER ON SET DEMENTIA. 1018 00:43:37,400 --> 00:43:40,720 SO I GOT LUCKY WITH LOVE. 1019 00:43:40,720 --> 00:43:43,200 I FELL MADLY IN LOVE WITH 1020 00:43:43,200 --> 00:43:46,320 LORENZO WHO IS HERE WITH OUR TWO 1021 00:43:46,320 --> 00:43:46,880 SONS. 1022 00:43:46,880 --> 00:43:49,200 THIS IS A COUPLE OF YEARS BEFORE 1023 00:43:49,200 --> 00:43:52,080 WHAT I CALL OUR FAMILY 1024 00:43:52,080 --> 00:43:53,200 DIAGNOSES. 1025 00:43:53,200 --> 00:43:58,840 WHEN LO -- LORENZO WAS DIAGNOSEE 1026 00:43:58,840 --> 00:44:01,240 WORE THIS NEW IDENTITY AS A 1027 00:44:01,240 --> 00:44:03,360 YOUNGER FAMILY WALKING WITH 1028 00:44:03,360 --> 00:44:05,640 DEMENTIA AND WE LEARNED QUICKLY 1029 00:44:05,640 --> 00:44:07,640 THAT THERE ARE REALLY SO FEW 1030 00:44:07,640 --> 00:44:12,080 PLACES FOR US TO LAND AND FEEL 1031 00:44:12,080 --> 00:44:12,480 COMMUNITY. 1032 00:44:12,480 --> 00:44:14,880 SO MY RESPONSE TO THIS WAS THAT 1033 00:44:14,880 --> 00:44:18,920 MAYBE I NEED TO FIRST FIGURE OUT 1034 00:44:18,920 --> 00:44:21,680 HOW I'M GOING TO RESPOND IN OUR 1035 00:44:21,680 --> 00:44:25,280 HOME AS A MOMMAS A WIFE AND ALSO 1036 00:44:25,280 --> 00:44:28,920 AS A WOMAN WHO WAS A FULL-TIME 1037 00:44:28,920 --> 00:44:31,680 CAREER PERSON AND BRED WINNER 1038 00:44:31,680 --> 00:44:34,880 AND * I ALSO THOUGHT MAYBE SINCE 1039 00:44:34,880 --> 00:44:37,080 THERE IS SO LITTLE IN THIS SPACE 1040 00:44:37,080 --> 00:44:39,080 MAYBE WE COULD BUILD SOMETHING, 1041 00:44:39,080 --> 00:44:41,960 A PLACE WHERE FAMILIES LIKE MINE 1042 00:44:41,960 --> 00:44:43,520 WHO WERE YOUNGER WALK WITH 1043 00:44:43,520 --> 00:44:44,760 DEMENTIA COULD GO. 1044 00:44:44,760 --> 00:44:50,600 SO THE IDEAS ARE THE RESPONSE IS 1045 00:44:50,600 --> 00:44:51,080 TWOFOLD. 1046 00:44:51,080 --> 00:44:55,400 HOW WE WALKED IN OUR HOME AND 1047 00:44:55,400 --> 00:45:00,160 THE LOVE THAT -- IS AT LORENZO'S 1048 00:45:00,160 --> 00:45:03,280 HOUSE. 1049 00:45:03,280 --> 00:45:05,600 I WILL OPEN BY SAYING THAT THIS 1050 00:45:05,600 --> 00:45:09,000 IS LORENZO AND DIANA'S PERSONAL 1051 00:45:09,000 --> 00:45:12,440 JOURNEY AND WE KNOW THAT THIS 1052 00:45:12,440 --> 00:45:15,640 EXPERIENCE BRINGS SO MUCH 1053 00:45:15,640 --> 00:45:18,200 SUFFERING AND DEVASTATION AND 1054 00:45:18,200 --> 00:45:20,280 DARKNESS AND WE KNOW THIS AND 1055 00:45:20,280 --> 00:45:22,640 I'M GRATEFUL FOR THE OPPORTUNITY 1056 00:45:22,640 --> 00:45:27,280 WHEN ERIN SAID LET'S SHED LIGHT 1057 00:45:27,280 --> 00:45:30,280 ON WHAT WE CAN DO. 1058 00:45:30,280 --> 00:45:34,000 AND WHEN I THOUGHT ABOUT OUR TOP 1059 00:45:34,000 --> 00:45:37,560 FIVE ... GRATITUDE IS SELF-CARE. 1060 00:45:37,560 --> 00:45:40,000 AS A CARE PARTNER WAKING UP 1061 00:45:40,000 --> 00:45:43,400 EVERY DAY I WAS ALWAYS LOOKING 1062 00:45:43,400 --> 00:45:45,240 FOR BITS OF LIGHT. 1063 00:45:45,240 --> 00:45:49,240 HOW I SET MY CUP OF COFFEE IN 1064 00:45:49,240 --> 00:45:49,560 THE MORNING. 1065 00:45:49,560 --> 00:45:52,280 HOW I WOULD SIT ON THE TERRACE 1066 00:45:52,280 --> 00:45:55,840 IN THE MORNING AND THAT WAS MY 1067 00:45:55,840 --> 00:45:57,720 MOMENT OF RESPID. 1068 00:45:57,720 --> 00:46:00,640 AND WE TALK ABOUT A WEEKEND AWAY 1069 00:46:00,640 --> 00:46:03,840 OR A MASSAGE THAT WAS NOT WHAT I 1070 00:46:03,840 --> 00:46:05,560 WAS LOOKING FOR. 1071 00:46:05,560 --> 00:46:08,200 I WAS LOOKING FOR THE SWEET TEXT 1072 00:46:08,200 --> 00:46:10,320 FROM A FRIEND OR THE MOMENTS OF 1073 00:46:10,320 --> 00:46:12,360 BEING GRATEFUL FOR ANYTHING AND 1074 00:46:12,360 --> 00:46:15,120 EVERYTHING AND THOSE HELPED TO 1075 00:46:15,120 --> 00:46:16,400 SUSTAIN ME. 1076 00:46:16,400 --> 00:46:18,080 GRATITUDE IS SELF-CARE. 1077 00:46:18,080 --> 00:46:19,960 THE NEXT IS MUSIC CHANGES 1078 00:46:19,960 --> 00:46:21,560 EVERYTHING. 1079 00:46:21,560 --> 00:46:27,080 FOR JUSTIN AND LUCAS -- OUR SONS 1080 00:46:27,080 --> 00:46:30,880 WERE 11 AND 13 UPON DIAGNOSIS. 1081 00:46:30,880 --> 00:46:32,400 MUSIC CHANGES EVERYTHING. 1082 00:46:32,400 --> 00:46:34,600 WHEN MY HUSBAND WAS NOT 1083 00:46:34,600 --> 00:46:37,920 EXPERIENCING JOY TURNING ON 1084 00:46:37,920 --> 00:46:42,240 EVERYONE FROM STEVIE WONDER TO 1085 00:46:42,240 --> 00:46:46,560 ELTON JOHN TO JAY-Z THEY WERE 1086 00:46:46,560 --> 00:46:49,160 ALL CAREGIVERS. 1087 00:46:49,160 --> 00:46:52,240 MUSIC IS KING IN OUR FAMILY. 1088 00:46:52,240 --> 00:46:54,400 CANNOT UNDERSTAND ESTIMATE HOW 1089 00:46:54,400 --> 00:46:57,880 IMPORTANT INVESTING IN ALEXIS 1090 00:46:57,880 --> 00:46:59,480 WAS FOR OUR FAMILY. 1091 00:46:59,480 --> 00:47:04,120 THE NEXT PIECE IS ABOUT METHODS 1092 00:47:04,120 --> 00:47:04,960 OF LOVE. 1093 00:47:04,960 --> 00:47:07,200 WE FELL IN LOVE WITH A PERSON 1094 00:47:07,200 --> 00:47:09,320 AND THEN THIS BRAIN CONDITION 1095 00:47:09,320 --> 00:47:11,840 AND THIS BRAIN CHANGE CHANGES 1096 00:47:11,840 --> 00:47:15,320 HIM. 1097 00:47:15,320 --> 00:47:19,280 THE IDEAS OF HOW THAT LOVE LOOKS 1098 00:47:19,280 --> 00:47:19,800 CHANGES. 1099 00:47:19,800 --> 00:47:21,880 AND SOMETHING LORETTA SAID IS 1100 00:47:21,880 --> 00:47:24,120 WHAT I THINK THIS NEW METHODS OF 1101 00:47:24,120 --> 00:47:25,240 LOVE IS ABOUT. 1102 00:47:25,240 --> 00:47:27,920 WE CAN SHOW OUR LOVE THROUGH 1103 00:47:27,920 --> 00:47:29,040 LEARNING EVERYTHING ABOUT THIS 1104 00:47:29,040 --> 00:47:31,000 CONDITION. 1105 00:47:31,000 --> 00:47:34,080 WE CAN SHOW OUR LOVE BY SEEING 1106 00:47:34,080 --> 00:47:35,760 BEHAVIORS AND EXPERIENCING 1107 00:47:35,760 --> 00:47:38,080 BEHAVIORS AND SEEKING OUT THE 1108 00:47:38,080 --> 00:47:40,400 RESOURCES TO RESPOND TO THESE 1109 00:47:40,400 --> 00:47:42,920 BEHAVIORS WITH AS MUCH PATIENCES 1110 00:47:42,920 --> 00:47:44,360 AND LOVE AND INFORMATION AS 1111 00:47:44,360 --> 00:47:45,560 POSSIBLE. 1112 00:47:45,560 --> 00:47:47,560 SO WHEN WE THINK ABOUT 1113 00:47:47,560 --> 00:47:49,560 RETHINKING HOW LOVE LOOKS 1114 00:47:49,560 --> 00:47:51,440 BECAUSE IT DOES LOOK DIFFERENT 1115 00:47:51,440 --> 00:47:52,920 IT'S NOT GONE. 1116 00:47:52,920 --> 00:47:54,480 IT'S JUST SHIFTED. 1117 00:47:54,480 --> 00:47:58,640 AND I THINK AGAIN THAT WHOLE 1118 00:47:58,640 --> 00:48:00,480 CONCEPT OF THE SHIFT, THE 1119 00:48:00,480 --> 00:48:06,480 NARRATIVE LAYS IN -- IN THIS 1120 00:48:06,480 --> 00:48:09,400 CASE MY SPOUSE, HOW ARE WE GOING 1121 00:48:09,400 --> 00:48:11,400 TO UNCOVER LOVE TODAY AND 1122 00:48:11,400 --> 00:48:14,200 SHIFTING HOW WE LOOK AT LOVE. 1123 00:48:14,200 --> 00:48:16,440 IT'S STILL THERE. 1124 00:48:16,440 --> 00:48:18,320 IT'S A LIVE IF WE'RE ABLE TO 1125 00:48:18,320 --> 00:48:21,200 FIND THE GRATITUDE, PULL BACK 1126 00:48:21,200 --> 00:48:23,320 THE SHADE AND SEE THE BITS OF 1127 00:48:23,320 --> 00:48:25,320 LIGHT AND THE ONE KEY DRIVING 1128 00:48:25,320 --> 00:48:27,080 PIECE IS UNDERSTANDING AS MUCH 1129 00:48:27,080 --> 00:48:30,400 AS WE CAN WHAT OUR LOVED ONE IS 1130 00:48:30,400 --> 00:48:31,760 EXPERIENCING AND HOW TO RESPOND 1131 00:48:31,760 --> 00:48:33,480 TO IT WITH LOVE. 1132 00:48:33,480 --> 00:48:35,600 ANOTHER BIG PIECE WAS RETHINKING 1133 00:48:35,600 --> 00:48:36,960 OUR HOME DESIGN. 1134 00:48:36,960 --> 00:48:39,520 THIS WAS -- I OFTEN WOULD SAY 1135 00:48:39,520 --> 00:48:41,280 THAT OUR HOME TURNED INTO 1136 00:48:41,280 --> 00:48:42,760 MUSEUM. 1137 00:48:42,760 --> 00:48:46,760 I'VE GOT A BISTRO ON THE TABLE. 1138 00:48:46,760 --> 00:48:48,880 WE WENT EVERY MORNING FOR 1139 00:48:48,880 --> 00:48:49,800 BREAKFAST. 1140 00:48:49,800 --> 00:48:51,920 THE TV WOULD BE ON DURING THE 1141 00:48:51,920 --> 00:48:54,200 DAY BECAUSE MY HUSBAND LOVED TO 1142 00:48:54,200 --> 00:48:55,920 BE INTERVIEWED AND THAT BECAME 1143 00:48:55,920 --> 00:48:57,800 AN IMPORTANT PART OF HIS 1144 00:48:57,800 --> 00:48:59,800 EXPERIENCE THAT HE WAS ENGAGING 1145 00:48:59,800 --> 00:49:02,600 WITH SOME KIND OF A NEWS REPORT 1146 00:49:02,600 --> 00:49:05,720 THAT WAS ON THE TV. 1147 00:49:05,720 --> 00:49:08,360 WE SWAPPED OUT OUR DINING ROOM 1148 00:49:08,360 --> 00:49:10,360 TABLE AND PUT A POOL TABLE IN 1149 00:49:10,360 --> 00:49:11,640 THE HOME. 1150 00:49:11,640 --> 00:49:14,520 WE TRIED TO RETHINK HOW THE 1151 00:49:14,520 --> 00:49:16,320 STRUCTURE AND THE DESIGN OF OUR 1152 00:49:16,320 --> 00:49:19,000 HOME LOOKED SO THIS IS A PLACE 1153 00:49:19,000 --> 00:49:21,120 THAT MET LORENZO'S NEEDS AND 1154 00:49:21,120 --> 00:49:22,440 ALSO A PLACE THAT THE FAMILY 1155 00:49:22,440 --> 00:49:26,320 COULD ALSO HAVE A SENSE OF 1156 00:49:26,320 --> 00:49:28,200 OWNERSHIP IN AS WELL SO BRINGING 1157 00:49:28,200 --> 00:49:30,480 MY SONS INTO THE EXPERIENCE. 1158 00:49:30,480 --> 00:49:33,120 THIS IS NOW A NEW PART OF OUR 1159 00:49:33,120 --> 00:49:34,880 IDENTITY AND GETTING THE FAMILY 1160 00:49:34,880 --> 00:49:38,080 TO BE PART OF THAT. 1161 00:49:38,080 --> 00:49:39,840 I SAY THAT THIS IS A DIAGNOSIS 1162 00:49:39,840 --> 00:49:41,520 OF THE FAMILY. 1163 00:49:41,520 --> 00:49:42,320 RIGHT? 1164 00:49:42,320 --> 00:49:45,880 AND EVERYONE INVOLVED IN THAT 1165 00:49:45,880 --> 00:49:48,560 AND ALWAYS AT DIFFERENT DEGREES. 1166 00:49:48,560 --> 00:49:50,480 BUT EVERYTHING TOGETHER AND THE 1167 00:49:50,480 --> 00:49:52,800 LAST ONE WAS THE POWER OF 1168 00:49:52,800 --> 00:49:54,480 CONNECTION AND CONNECTING WITH 1169 00:49:54,480 --> 00:49:57,120 GOOD FRIENDS, BEAUTIFUL, FAMILY 1170 00:49:57,120 --> 00:49:59,400 WHO UNDERSTAND BEAUTIFUL. 1171 00:49:59,400 --> 00:50:02,080 WHO IS ABLE TO UNDERSTAND YOUR 1172 00:50:02,080 --> 00:50:02,440 JOURNEY. 1173 00:50:02,440 --> 00:50:06,120 AND THAT IS THE PERFECT SEGUE TO 1174 00:50:06,120 --> 00:50:09,680 LORENZO'S HOUSE. 1175 00:50:09,680 --> 00:50:12,360 WHY LORENZO'S HOUSE. 1176 00:50:12,360 --> 00:50:14,840 THIS SHIFT FROM -- TWO AND A 1177 00:50:14,840 --> 00:50:17,880 HALF YEARS AGO I FOUNDED 1178 00:50:17,880 --> 00:50:21,320 LORENZO'S HOUSE IN THIS BEDROOM 1179 00:50:21,320 --> 00:50:24,280 -- THIS WAS MY SON'S BEDROOM. 1180 00:50:24,280 --> 00:50:26,320 AND THERE WAS A REASON WHY. 1181 00:50:26,320 --> 00:50:28,520 IS THAT YOUNGER FAMILIES LIVING 1182 00:50:28,520 --> 00:50:30,240 WITH DEMENTIA YOUNGER FAMILIES 1183 00:50:30,240 --> 00:50:33,240 ARE UNSEEN AND MISUNDERSTOOD AND 1184 00:50:33,240 --> 00:50:34,760 UNDER RESOURCED. 1185 00:50:34,760 --> 00:50:39,360 THE STIGMA IS THAT IT'S AN OLDER 1186 00:50:39,360 --> 00:50:40,320 PERSON'S DISEASE. 1187 00:50:40,320 --> 00:50:43,640 IT IS NOT. 1188 00:50:43,640 --> 00:50:48,200 AND THAT WAS A STUDY ACROSS BLUE 1189 00:50:48,200 --> 00:50:53,280 CROSS BLUE SHIELD IN 2013. 1190 00:50:53,280 --> 00:51:02,200 WHEN THEY DON'T HAVE IT -- -- 1191 00:51:02,200 --> 00:51:04,720 YOUNGER IS BEFORE THE AGE OF 65 1192 00:51:04,720 --> 00:51:08,840 THERE ARE A UNIQUE SET OF FAMILY 1193 00:51:08,840 --> 00:51:12,200 CHALLENGES. 1194 00:51:12,200 --> 00:51:16,800 FORCED TO LEAVE CAREERS EARLY. 1195 00:51:16,800 --> 00:51:19,560 INCOME LOSS. 1196 00:51:19,560 --> 00:51:22,480 RAISING YOUNGER CHILDREN. 1197 00:51:22,480 --> 00:51:24,520 BECOMING A SINGLE PARENT. 1198 00:51:24,520 --> 00:51:26,880 THERE ARE UNIQUE CHALLENGES TO 1199 00:51:26,880 --> 00:51:29,600 THE PROFILE OF THE YOUNGER 1200 00:51:29,600 --> 00:51:33,200 FAMILY. 1201 00:51:33,200 --> 00:51:36,200 OUR MODEL, WE ARE FOUNDED IN 1202 00:51:36,200 --> 00:51:37,880 CHICAGO BUT WE ARE AN 1203 00:51:37,880 --> 00:51:39,880 INTERNATIONAL ORGANIZATION IN 1204 00:51:39,880 --> 00:51:41,480 TWO AND A HALF YEARS. 1205 00:51:41,480 --> 00:51:45,440 WE'RE FOCUSED ON YOUNGER 1206 00:51:45,440 --> 00:51:49,200 FAMILIES LIVING WITH ANY FORM OF 1207 00:51:49,200 --> 00:51:49,600 DEMENTIA. 1208 00:51:49,600 --> 00:51:54,680 OUR TAG LINE IS WE BRING LIGHT. 1209 00:51:54,680 --> 00:51:56,640 A LABOR OF LOVE. 1210 00:51:56,640 --> 00:51:58,600 OVER 400 FAMILIES ARE RECEIVING 1211 00:51:58,600 --> 00:52:00,120 OUR SERVICES. 1212 00:52:00,120 --> 00:52:02,440 OUR CAR PARTNER SPACES IS FOR 1213 00:52:02,440 --> 00:52:05,120 THE PRIMARY CARE PARTNER. 1214 00:52:05,120 --> 00:52:08,520 OUR YOUTH INITIATIVES AND MEMORY 1215 00:52:08,520 --> 00:52:08,760 ACADEMY. 1216 00:52:08,760 --> 00:52:11,040 FOR THOSE LIVING WITH THE 1217 00:52:11,040 --> 00:52:11,760 DIAGNOSIS. 1218 00:52:11,760 --> 00:52:14,120 I'M GOING TO SHINE LIGHT ON OUR 1219 00:52:14,120 --> 00:52:17,240 YOUTH INITIATIVES. 1220 00:52:17,240 --> 00:52:20,000 BECAUSE THIS IS THE WAY THAT 1221 00:52:20,000 --> 00:52:22,200 WE'VE BEEN STARTING TO BUILD OUT 1222 00:52:22,200 --> 00:52:23,800 OUR ORGANIZATION IS THROUGH THE 1223 00:52:23,800 --> 00:52:26,240 LENS OF OUR YOUTH. 1224 00:52:26,240 --> 00:52:29,680 THIS IS GOING TO BE A VIDEO CLIP 1225 00:52:29,680 --> 00:52:31,280 FROM LUCAS. 1226 00:52:31,280 --> 00:52:35,400 WE PROVIDE SAFE BRAVE SPACES FOR 1227 00:52:35,400 --> 00:52:37,280 OUR YOUTH TO CONNECT WITH OTHER 1228 00:52:37,280 --> 00:52:39,320 YOUTH WHO ARE WALKING THE 1229 00:52:39,320 --> 00:52:40,120 SIMILAR JOURNEY. 1230 00:52:40,120 --> 00:52:43,320 THERE ARE, WE JUST HAD OUR 1231 00:52:43,320 --> 00:52:44,760 FAMILY NIGHT IN CHICAGO. 1232 00:52:44,760 --> 00:52:48,160 WE HAD OVER 100 YOUTH, YOUNG 1233 00:52:48,160 --> 00:52:50,520 PEOPLE AND THEIR PARENTS AT 1234 00:52:50,520 --> 00:52:52,080 FAMILY NIGHT ON FRIDAY NIGHT AND 1235 00:52:52,080 --> 00:52:54,960 IT WAS -- THERE WAS SO MUCH LOVE 1236 00:52:54,960 --> 00:52:56,080 IN THE ROOM. 1237 00:52:56,080 --> 00:52:57,880 IT WAS ELECTRIFYING BECAUSE WE 1238 00:52:57,880 --> 00:53:00,680 DON'T GET TO SEE EACH OTHER. 1239 00:53:00,680 --> 00:53:04,000 WE'RE A SIZEABLE NICHD GROUP AND 1240 00:53:04,000 --> 00:53:05,760 WHEN YOU CAN SEE YOUNG PEOPLE 1241 00:53:05,760 --> 00:53:07,480 HAVING THIS BROTHERHOOD AND 1242 00:53:07,480 --> 00:53:10,040 SISTERS HOOD BECAUSE THEY HAVE 1243 00:53:10,040 --> 00:53:11,800 FOUND SOMEBODY WHO GETS THEM IT 1244 00:53:11,800 --> 00:53:16,760 IS THE MOST PROVOCATIVE AND 1245 00:53:16,760 --> 00:53:17,720 EMPOWERING THING. 1246 00:53:17,720 --> 00:53:21,160 WE'RE SHARING THIS WITH YOU AND 1247 00:53:21,160 --> 00:53:24,760 HE IS ONE VOICE OF MANY WHO 1248 00:53:24,760 --> 00:53:26,680 FEELS SAFE ENOUGH TO SHARE 1249 00:53:26,680 --> 00:53:28,800 PIECES OF OUR STORY. 1250 00:53:28,800 --> 00:53:31,680 OUR YOUTH HAVE IT THE HARDEST 1251 00:53:31,680 --> 00:53:33,600 AND YET THEIR VOICE IS THE 1252 00:53:33,600 --> 00:53:35,600 SOFTEST AND KEEP IN MIND THAT 1253 00:53:35,600 --> 00:53:39,880 EVERY YOUTH IS A YOUTH WHO'S 1254 00:53:39,880 --> 00:53:42,280 WALKING WITH A PARENT DIAGNOSED. 1255 00:53:42,280 --> 00:53:44,600 A MOM OR DAD OR THE GUARDIAN WHO 1256 00:53:44,600 --> 00:53:49,040 HAS RAISED THEM DIAGNOSED. 1257 00:53:49,040 --> 00:53:52,160 SO THIS IS LUCAS AND THANK YOU 1258 00:53:52,160 --> 00:53:56,840 FOR LISTENING. 1259 00:53:56,840 --> 00:53:58,520 >>WHEN MY DAD WAS DIAGNOSED 1260 00:53:58,520 --> 00:54:02,720 WITH YOUNGER ONSET ALZHEIMER'S I 1261 00:54:02,720 --> 00:54:03,640 WAS ELEVEN. 1262 00:54:03,640 --> 00:54:06,040 I DIDN'T REALLY UNDERSTAND SO I 1263 00:54:06,040 --> 00:54:07,320 TOOK TIME FOR GRANTED. 1264 00:54:07,320 --> 00:54:08,960 I HAD NO IDEA OF THE DAMAGE IT 1265 00:54:08,960 --> 00:54:11,000 WAS GOING TO CAUSAL OF US. 1266 00:54:11,000 --> 00:54:13,320 MY MOM KEPT US STRONG BUT ON THE 1267 00:54:13,320 --> 00:54:14,880 INSIDE WAS SAD. 1268 00:54:14,880 --> 00:54:17,040 ME AND MY BROTHER DID NOT WANT 1269 00:54:17,040 --> 00:54:17,880 TO TALK ABOUT IT. 1270 00:54:17,880 --> 00:54:19,920 I REMEMBER MY DAD. 1271 00:54:19,920 --> 00:54:21,720 HE BECAME QUIET AND LOW SPIRITED 1272 00:54:21,720 --> 00:54:24,320 WHEN HE WAS USUALLY PLAYFUL AND 1273 00:54:24,320 --> 00:54:24,720 POSITIVE. 1274 00:54:24,720 --> 00:54:28,960 AT FIRST IT SEEMED LIKE THINGS 1275 00:54:28,960 --> 00:54:30,440 STAYED THE SAME. 1276 00:54:30,440 --> 00:54:32,560 MY DAD WAS STILL DRIVING ME TO 1277 00:54:32,560 --> 00:54:33,880 PRACTICE AND WALKED ME TO SCHOOL 1278 00:54:33,880 --> 00:54:36,200 AND ASKED ME A BUNCH OF 1279 00:54:36,200 --> 00:54:38,560 QUESTIONS BUT AT THE END OF MY 1280 00:54:38,560 --> 00:54:42,320 7th GRADE YEAR I SAW A BIG 1281 00:54:42,320 --> 00:54:42,880 DIFFERENCE. 1282 00:54:42,880 --> 00:54:45,840 HE TOOK ME TO HIS CHILDHOOD 1283 00:54:45,840 --> 00:54:46,200 HOME. 1284 00:54:46,200 --> 00:54:49,080 WE WOULD PLAY BOARD GAMES AS A 1285 00:54:49,080 --> 00:54:53,000 FAMILY H HE WOULD GET CONFUSED. 1286 00:54:53,000 --> 00:54:56,240 WE DON'T PLAY ANY MORE. 1287 00:54:56,240 --> 00:55:00,680 HE WOULD ACCUSE MY BIG BROTHER 1288 00:55:00,680 --> 00:55:03,040 OF TAKING HIS CLIENTS. 1289 00:55:03,040 --> 00:55:07,400 WE STARTED TO STAY HOME. 1290 00:55:07,400 --> 00:55:10,000 STOPPED HAVING PEOPLE OVER. 1291 00:55:10,000 --> 00:55:11,160 LIFE BECAME BORING. 1292 00:55:11,160 --> 00:55:15,720 I FEEL ANNOYED AND EMBARRASSED. 1293 00:55:15,720 --> 00:55:17,920 MY DAD IS SICK AND CAN'T HELP 1294 00:55:17,920 --> 00:55:18,320 IT. 1295 00:55:18,320 --> 00:55:21,320 BUT ONE OF THE THINGS I SUFFER 1296 00:55:21,320 --> 00:55:24,880 WITH IS THAT I'LL REMEMBER HIM 1297 00:55:24,880 --> 00:55:26,480 AS SOMEBODY I DIDN'T KNOW. 1298 00:55:26,480 --> 00:55:29,080 SOMEBODY THAT I TOOK CARE OF. 1299 00:55:29,080 --> 00:55:31,600 I THINK ABOUT HOW HE COULD HAVE 1300 00:55:31,600 --> 00:55:33,600 IMPACTED ME AND MADE ME A BETTER 1301 00:55:33,600 --> 00:55:34,680 PERSON. 1302 00:55:34,680 --> 00:55:36,760 I KNOW IF I KEEP ON THINKING 1303 00:55:36,760 --> 00:55:39,360 ABOUT IT WILL BRING ME MORE PAIN 1304 00:55:39,360 --> 00:55:41,560 SO I TRY NOT TO. 1305 00:55:41,560 --> 00:55:43,640 OTHER YOUNG PEOPLE HAVE A 1306 00:55:43,640 --> 00:55:45,320 SIMILAR STORY AND KNOWING THAT 1307 00:55:45,320 --> 00:55:48,160 I'M NOT ALONE GIVES ME HOPE. 1308 00:55:48,160 --> 00:55:52,000 THIS IS WHY LORENZO'S CAMP IS 1309 00:55:52,000 --> 00:55:54,280 GOING TO BE A GOOD THING. 1310 00:55:54,280 --> 00:55:56,560 WE ARE EMPATHIZE TOGETHER AND 1311 00:55:56,560 --> 00:55:57,600 BUILD RELATIONSHIPS WITH PEOPLE 1312 00:55:57,600 --> 00:55:58,960 WHO UNDERSTAND AND SUPPORT EACH 1313 00:55:58,960 --> 00:56:01,320 OTHER ALONG THE WAY. 1314 00:56:01,320 --> 00:56:03,320 TODAY THINGS ARE BETTER IN MANY 1315 00:56:03,320 --> 00:56:05,640 WAYS BECAUSE WE'RE STRONGER AS A 1316 00:56:05,640 --> 00:56:06,040 FAMILY. 1317 00:56:06,040 --> 00:56:07,600 WE UNDERSTAND HOW TO MANAGE 1318 00:56:07,600 --> 00:56:09,560 THINGS AND HAVE SOME FUN AGAIN. 1319 00:56:09,560 --> 00:56:12,200 A NOT NORMAL BUT IT'S BETTER. 1320 00:56:12,200 --> 00:56:14,800 I'LL TAKE CARE OF MY FAMILY. 1321 00:56:14,800 --> 00:56:17,240 TRY TO BE AS NORMAL OF A 1322 00:56:17,240 --> 00:56:20,480 TEENAGER AS I CAN AND DEAL WITH 1323 00:56:20,480 --> 00:56:22,880 THE DECK I'VE BEEN DEALT. 1324 00:56:22,880 --> 00:56:25,120 I'M WILLING TO ACCEPT THINGS. 1325 00:56:25,120 --> 00:56:27,560 I KNOW THAT I'LL COME OUT OF 1326 00:56:27,560 --> 00:56:29,760 THIS STRONGER AND MOST OF THE 1327 00:56:29,760 --> 00:56:32,440 DAYS I THINK MY DAD WOULD BE 1328 00:56:32,440 --> 00:56:34,960 PROUD OF ME. 1329 00:56:34,960 --> 00:56:39,120 >>NEXT SLIDE, PLEASE. 1330 00:56:39,120 --> 00:56:41,360 >>SO JUST TO REFLECT ON LUCAS 1331 00:56:41,360 --> 00:56:44,040 AND I DON'T KNOW WHAT WORDS WE 1332 00:56:44,040 --> 00:56:47,000 CAN SHARE AFTER HEARING THIS 1333 00:56:47,000 --> 00:56:47,200 PIECE. 1334 00:56:47,200 --> 00:56:49,880 THERE ARE DOZENS OF KIDS WHO ARE 1335 00:56:49,880 --> 00:56:51,640 WALKING THIS JOURNEY WITH THEIR 1336 00:56:51,640 --> 00:56:53,880 PARENTS WHO DO NOT HAVE THE 1337 00:56:53,880 --> 00:56:56,080 WORDS TO DESCRIBE THE 1338 00:56:56,080 --> 00:56:58,760 COMPLEXITIES OF THIS DISEASE THE 1339 00:56:58,760 --> 00:57:00,440 LAYERS OF CONFUSION THAT IT CAN 1340 00:57:00,440 --> 00:57:01,480 BRING. 1341 00:57:01,480 --> 00:57:04,960 AND THE ISOLATION THAT THEY 1342 00:57:04,960 --> 00:57:06,800 EXPERIENCE. 1343 00:57:06,800 --> 00:57:09,040 BUT WHEN OUR KIDS FIND EACH 1344 00:57:09,040 --> 00:57:11,560 OTHER AT THE LIGHT CLUB WHICH IS 1345 00:57:11,560 --> 00:57:13,160 A SUPPORT GROUP. 1346 00:57:13,160 --> 00:57:15,160 THEY DIDN'T WANT TO CALL IT A 1347 00:57:15,160 --> 00:57:16,200 HAVE YOU REPORT GROUP. 1348 00:57:16,200 --> 00:57:18,960 IT'S A VIRTUAL HANGOUT ON 1349 00:57:18,960 --> 00:57:22,560 WEDNESDAY NIGHTS. 1350 00:57:22,560 --> 00:57:23,400 THEY FIND COMMUNITY. 1351 00:57:23,400 --> 00:57:26,880 THEY ARE BUILDING AN APPLIANCE. 1352 00:57:26,880 --> 00:57:29,320 AND IT IS INCREDIBLY POWERFUL 1353 00:57:29,320 --> 00:57:31,600 AND A HEALING PLACE FOR OUR KIDS 1354 00:57:31,600 --> 00:57:33,920 AND SO CRITICALLY NEEDED. 1355 00:57:33,920 --> 00:57:37,280 OUR YOUTH SUMMIT IS COMING UP. 1356 00:57:37,280 --> 00:57:41,080 OUR FIRST YEAR WE HAD 20 YOUTH. 1357 00:57:41,080 --> 00:57:43,960 LAST YEAR WE HAD 43 AND THIS 1358 00:57:43,960 --> 00:57:45,440 YEAR WE HAVE OVER 80. 1359 00:57:45,440 --> 00:57:46,960 AND COUNTING. 1360 00:57:46,960 --> 00:57:49,200 AND IT IS ON JUNE 17th. 1361 00:57:49,200 --> 00:57:51,760 A DAY WHERE WE BRING PARTNERS 1362 00:57:51,760 --> 00:57:52,160 IN. 1363 00:57:52,160 --> 00:57:53,880 OUR YOUTH LEAD THESE SESSIONS. 1364 00:57:53,880 --> 00:57:56,120 THEY DECIDE THE SESSION TOPICS 1365 00:57:56,120 --> 00:57:58,200 AND THEY LEAD THEM WITH A 1366 00:57:58,200 --> 00:57:59,440 PROFESSIONAL IN THE SPACE BUZZ 1367 00:57:59,440 --> 00:58:02,800 REALLY THEY ARE THE * ONE THAT'S 1368 00:58:02,800 --> 00:58:04,280 ARE GUIDING. 1369 00:58:04,280 --> 00:58:06,720 AND OUR FAMILIES THEIR VOICES 1370 00:58:06,720 --> 00:58:09,160 ARE DRIVING AND BUILDING 1371 00:58:09,160 --> 00:58:09,840 LORENZO'S HOUSE. 1372 00:58:09,840 --> 00:58:13,880 OUR BE THE SPARK CAMPAIGN CAME 1373 00:58:13,880 --> 00:58:15,680 ABOUT BECAUSE WE HAVE YOUNGER 1374 00:58:15,680 --> 00:58:19,560 PROFESSIONALS WHO ARE ADVOCATES. 1375 00:58:19,560 --> 00:58:21,680 INCREDIBLY POWERFUL. 1376 00:58:21,680 --> 00:58:23,880 THE STIGMA ROUND NOT BEING ABLE 1377 00:58:23,880 --> 00:58:24,520 TO TALK. 1378 00:58:24,520 --> 00:58:26,320 WE CAN TALK ABOUT CANCER. 1379 00:58:26,320 --> 00:58:28,520 WHY NOT ABOUT DEMENTIA AND YET 1380 00:58:28,520 --> 00:58:30,200 SO PEOPLE ARE SO INSPIRED. 1381 00:58:30,200 --> 00:58:32,800 THERE IS AN INTERNATIONAL BOARD 1382 00:58:32,800 --> 00:58:36,520 AND NOW THE BE THE SPARK 1383 00:58:36,520 --> 00:58:39,600 CAMPAIGN TO HAVE A CHAPTER IN 1384 00:58:39,600 --> 00:58:40,640 YOUR OWN TOWN. 1385 00:58:40,640 --> 00:58:43,440 HOW DO WE SHIFT THE NARRATIVE 1386 00:58:43,440 --> 00:58:46,800 AND SHINE THE LIGHT ON STIGMA. 1387 00:58:46,800 --> 00:58:49,560 YES I WANT TO DO SOMETHING IN MY 1388 00:58:49,560 --> 00:58:52,480 HOME AND BE INFORMED BUT I ALSO 1389 00:58:52,480 --> 00:58:54,720 WANT TO BE SOMEONE WHO'S 1390 00:58:54,720 --> 00:58:57,360 ACTIVELY DISMANTLING THE STIGMAS 1391 00:58:57,360 --> 00:59:02,400 THAT SURROUND MY FAMILY, MY DAD 1392 00:59:02,400 --> 00:59:05,080 OR MY MOM OR EVEN MYSELF. 1393 00:59:05,080 --> 00:59:07,520 THESE ARE A FEW OF THE EARLY 1394 00:59:07,520 --> 00:59:09,760 SHOTS OF LIGHT THAT OUR KIDS ARE 1395 00:59:09,760 --> 00:59:14,040 BUILDING AS A WAY TO BOTH 1396 00:59:14,040 --> 00:59:16,480 SUSTAIN THEMSELVES AND BUILD A 1397 00:59:16,480 --> 00:59:20,040 COMMUNITY WHERE THEY CAN FIND 1398 00:59:20,040 --> 00:59:21,720 DIRECTION AND SUPPORT AND TO 1399 00:59:21,720 --> 00:59:23,480 BUILD THIS PATH FOR THOSE WHO 1400 00:59:23,480 --> 00:59:25,280 COME BEHIND THEM UNTIL A CURE IS 1401 00:59:25,280 --> 00:59:28,520 FOUND. 1402 00:59:28,520 --> 00:59:31,480 AND THEN THESE ARE OUR VALUES 1403 00:59:31,480 --> 00:59:33,720 AND LORENZO'S HOUSE IS A 1404 00:59:33,720 --> 00:59:34,560 BEAUTIFUL PLACE. 1405 00:59:34,560 --> 00:59:37,120 IT'S HEALING ME AND I'M SO 1406 00:59:37,120 --> 00:59:38,800 GRATEFUL. 1407 00:59:38,800 --> 00:59:40,520 FOLLOW US ON SOCIALS. 1408 00:59:40,520 --> 00:59:47,760 THERE IS -- THERE WAS A FLITCH H 1409 00:59:47,760 --> 00:59:49,280 HERE. 1410 00:59:49,280 --> 00:59:55,320 IT SHOULD BE INFO@LORENZO'S 1411 00:59:55,320 --> 00:59:56,480 HOUSE.ORG. 1412 00:59:56,480 --> 00:59:58,800 THANK YOU EVERYONE FOR THE 1413 00:59:58,800 --> 01:00:02,360 OPPORTUNITY. 1414 01:00:02,360 --> 01:00:04,000 THAT. THANKS TO EACH OF YOU FOR 1415 01:00:04,000 --> 01:00:05,560 THE AMAZING PRESENTATIONS THAT 1416 01:00:05,560 --> 01:00:06,600 YOU BROUGHT. 1417 01:00:06,600 --> 01:00:09,080 WE REALLY HAVE BEEN ABLE TO 1418 01:00:09,080 --> 01:00:10,440 DISCUSS RESILIENCE IN CARE 1419 01:00:10,440 --> 01:00:13,640 GIVING FROM A BROAD SPECTRUM 1420 01:00:13,640 --> 01:00:16,440 TALKING FROM THE PERSPECTIVE OF 1421 01:00:16,440 --> 01:00:18,960 CAREGIVERS, THE ISSUE OVER-ALL 1422 01:00:18,960 --> 01:00:24,680 AS WELL AS THE ADVANCES -- IN 1423 01:00:24,680 --> 01:00:26,200 RESEARCH. 1424 01:00:26,200 --> 01:00:31,520 WE HAVE SOME QUESTIONS THAT WE 1425 01:00:31,520 --> 01:00:35,160 HAVE RECEIVED FROM THE 1426 01:00:35,160 --> 01:00:35,800 ATTENDEES. 1427 01:00:35,800 --> 01:00:37,560 AND I'M GOING TO THROW THEM OUT 1428 01:00:37,560 --> 01:00:37,760 THERE. 1429 01:00:37,760 --> 01:00:41,520 IF I KNOW WHO IT IS THEN IT 1430 01:00:41,520 --> 01:00:44,080 MIGHT BE LOGICAL TO START WITH. 1431 01:00:44,080 --> 01:00:49,840 IF NOT I'LL LET YOU ALL GO -- IT 1432 01:00:49,840 --> 01:00:53,000 WILL GO ORGANICALLY BECAUSE 1433 01:00:53,000 --> 01:00:54,800 YOU'RE THE EXPERTS. 1434 01:00:54,800 --> 01:01:04,040 THE FIRST QUESTION IS -- HOW DO 1435 01:01:04,040 --> 01:01:06,800 YOU FIND RESILIENCE IN RESOURCES 1436 01:01:06,800 --> 01:01:10,120 FOR LATE STAGE ALZHEIMER'S WHEN 1437 01:01:10,120 --> 01:01:12,920 MY SPOUSE IS JUST STARING AHEAD 1438 01:01:12,920 --> 01:01:15,280 AND NOT WANTING TO BE TOUCHED? 1439 01:01:15,280 --> 01:01:17,800 I THINK LORETTA THIS MIGHT BE A 1440 01:01:17,800 --> 01:01:19,920 GOOD ONE FOR YOU TO JUMP IN AND 1441 01:01:19,920 --> 01:01:22,600 THEN WE CAN MOVE FROM THERE. 1442 01:01:22,600 --> 01:01:23,200 >>YEAH. 1443 01:01:23,200 --> 01:01:26,280 THANKS SO MUCH. 1444 01:01:26,280 --> 01:01:31,240 I WAS LUCKY IN ONE SENSE THE 1445 01:01:31,240 --> 01:01:32,920 LEGO BRICKS. 1446 01:01:32,920 --> 01:01:35,120 WE HAD BEEN DOING THAT MY WHOLE 1447 01:01:35,120 --> 01:01:37,240 LIFE SO WE KEPT THAT GOING AND 1448 01:01:37,240 --> 01:01:39,120 EVEN ON THE DAY THAT SHE DIED 1449 01:01:39,120 --> 01:01:42,240 SHE HAD LEGO BRICKS IN HER 1450 01:01:42,240 --> 01:01:42,600 HANDS. 1451 01:01:42,600 --> 01:01:44,800 SO ONE THING IS SEE IF YOU CAN 1452 01:01:44,800 --> 01:01:47,720 GET A RESPONSE FROM HIM IN 1453 01:01:47,720 --> 01:01:49,520 SOMETHING THAT YOU ALL USED TO 1454 01:01:49,520 --> 01:01:51,320 DO ALL THE TIME. 1455 01:01:51,320 --> 01:01:53,760 AFTER MY MOM LEGO DID HELP HER 1456 01:01:53,760 --> 01:02:01,120 FIND A LOT OF HER WORDS AND EVEN 1457 01:02:01,120 --> 01:02:03,720 AT THE END. 1458 01:02:03,720 --> 01:02:05,560 I WOULD START WITH THAT AND WE 1459 01:02:05,560 --> 01:02:08,280 CAN TALK OFF-LINE ABOUT SOME 1460 01:02:08,280 --> 01:02:08,680 ACTIVITIES. 1461 01:02:08,680 --> 01:02:11,000 I'VE BEEN TO PEOPLE'S HOUSES 1462 01:02:11,000 --> 01:02:12,400 WITH ACTIVITIES. 1463 01:02:12,400 --> 01:02:14,520 IT IS THE HARDEST THING BUT I 1464 01:02:14,520 --> 01:02:18,280 THINK KIND OF LIKE DIANA WAS 1465 01:02:18,280 --> 01:02:20,480 SAYING MUSIC WAS ALSO WONDERFUL 1466 01:02:20,480 --> 01:02:22,840 FOR US. 1467 01:02:22,840 --> 01:02:24,880 THANK YOU ALEXA. 1468 01:02:24,880 --> 01:02:26,000 BECAUSE WE PLAYED EVERYTHING IN 1469 01:02:26,000 --> 01:02:27,280 THE CAR. 1470 01:02:27,280 --> 01:02:29,720 HER FAVORITE STATION WAS FRANK 1471 01:02:29,720 --> 01:02:31,240 SINATRA. 1472 01:02:31,240 --> 01:02:33,080 THEY ARE IN THERE. 1473 01:02:33,080 --> 01:02:35,520 ONE OF THE HARDEST THINGS FOR US 1474 01:02:35,520 --> 01:02:37,000 WHEN IT GETS TO THE LAST PIECE 1475 01:02:37,000 --> 01:02:39,800 IS TO BRING THEM OUT. 1476 01:02:39,800 --> 01:02:42,680 AND ROBIN ROBERTS SAID IT BEST 1477 01:02:42,680 --> 01:02:44,880 -- YOU KNOW YOU SPENT SO MUCH 1478 01:02:44,880 --> 01:02:47,560 TIME TRYING TO BRING YOUR MOTHER 1479 01:02:47,560 --> 01:02:47,960 OUT. 1480 01:02:47,960 --> 01:02:49,000 I DID. 1481 01:02:49,000 --> 01:02:53,360 I THOUGHT THAT WAS MY THING. 1482 01:02:53,360 --> 01:02:55,280 EVEN ON THE LAST DAY. 1483 01:02:55,280 --> 01:02:58,720 I TOLD MANY PEOPLE I SHOWED THE 1484 01:02:58,720 --> 01:03:01,720 LAST PICTURE OF HER -- AND I 1485 01:03:01,720 --> 01:03:05,360 PROMISED HER THAT WE WOULD DO -- 1486 01:03:05,360 --> 01:03:07,840 WE WOULD HAVE JOY EVERY DAY AND 1487 01:03:07,840 --> 01:03:11,120 NOW WE KNOW -- YOU FIND ONE 1488 01:03:11,120 --> 01:03:13,720 MOMENT. 1489 01:03:13,720 --> 01:03:15,960 SO I STUCK WITH THAT. 1490 01:03:15,960 --> 01:03:19,640 SO MY ONLY REGRET IS THAT SHE IS 1491 01:03:19,640 --> 01:03:20,320 NOT THERE. 1492 01:03:20,320 --> 01:03:22,960 BUT I UNDERSTOOD THE ASSIGNMENT. 1493 01:03:22,960 --> 01:03:25,760 I GAVE HER JOY EVERY DAY. 1494 01:03:25,760 --> 01:03:28,000 BUT THE HARDEST PART IS JUST 1495 01:03:28,000 --> 01:03:31,000 TRYING TO ERASE THE STARE. 1496 01:03:31,000 --> 01:03:32,880 SEE IF YOU CAN TRY DIFFERENT 1497 01:03:32,880 --> 01:03:33,280 THINGS. 1498 01:03:33,280 --> 01:03:35,200 START WITH THE MUSIC AND SEE IF 1499 01:03:35,200 --> 01:03:36,880 HE COMES AROUND. 1500 01:03:36,880 --> 01:03:38,880 A GLIMPSE OF A SMILE THAT WILL 1501 01:03:38,880 --> 01:03:40,440 MAKE YOU REMEMBER TIMES THAT I 1502 01:03:40,440 --> 01:03:41,520 USED TO SHARE. 1503 01:03:41,520 --> 01:03:43,040 THAT IS A LOT BETTER THAN 1504 01:03:43,040 --> 01:03:48,760 NOTHING. 1505 01:03:48,760 --> 01:03:50,880 >>DOES ANYBODY ELSE HAVE 1506 01:03:50,880 --> 01:03:54,960 ANYTHING THAT THEY WOULD LIKE TO 1507 01:03:54,960 --> 01:03:59,160 FOLLOW-UP ON WITH LORETTA'S 1508 01:03:59,160 --> 01:03:59,600 ANSWER 1509 01:03:59,600 --> 01:04:03,080 >>I WOULD LIKE TO ADD ONE -- 1510 01:04:03,080 --> 01:04:05,960 WHEN THINGS ARE REALLY 1511 01:04:05,960 --> 01:04:07,640 CHALLENGING THE IMPORTANCE IS 1512 01:04:07,640 --> 01:04:09,200 HOW TO ACCEPT THE SITUATION AND 1513 01:04:09,200 --> 01:04:11,680 TRY TO FIND MEANING FROM THE 1514 01:04:11,680 --> 01:04:12,600 PROCESS. 1515 01:04:12,600 --> 01:04:14,280 MAYBE IF THERE ARE OTHER 1516 01:04:14,280 --> 01:04:17,600 FAMILIES OR FRIENDS THAT IS 1517 01:04:17,600 --> 01:04:19,080 IMPORTANT FOR YOUR LOVED ONES 1518 01:04:19,080 --> 01:04:20,960 YOU CAN INVITE THEM AND 1519 01:04:20,960 --> 01:04:23,720 CONNECTING WITH THEM AND SHARE 1520 01:04:23,720 --> 01:04:27,560 YOUR MEMORIES AND SORROW AND JOY 1521 01:04:27,560 --> 01:04:30,000 WITH THEM AND THAT PROCESS WILL 1522 01:04:30,000 --> 01:04:31,000 ALSO BRING MEANING TO THE 1523 01:04:31,000 --> 01:04:39,360 PROCESS. 1524 01:04:39,360 --> 01:04:40,920 >>I WAS ON MUTE. 1525 01:04:40,920 --> 01:04:41,480 SORRY ABOUT THAT. 1526 01:04:41,480 --> 01:04:47,600 ANYBODY ELSE? 1527 01:04:47,600 --> 01:04:49,360 IT'S CLEAR THAT THERE IS A NEED 1528 01:04:49,360 --> 01:04:51,040 FOR MUCH MORE RESEARCH ON 1529 01:04:51,040 --> 01:04:52,680 RESILIENCE AND CAREGIVING. 1530 01:04:52,680 --> 01:04:55,320 DO YOU HAVE ANY SUGGESTIONS ON 1531 01:04:55,320 --> 01:05:01,360 WAYS TO ADVANCE THE RESEARCH ON 1532 01:05:01,360 --> 01:05:03,480 RESILIENCE AND CAREGIVING. 1533 01:05:03,480 --> 01:05:08,840 I THOUGHT OTHERS MIGHT -- HAVE 1534 01:05:08,840 --> 01:05:14,680 SOMETHING TO ADD. 1535 01:05:14,680 --> 01:05:17,480 >>I'M HAPPY TO GET US STARTED. 1536 01:05:17,480 --> 01:05:21,040 ONE THING AS I MENTIONED IT'S 1537 01:05:21,040 --> 01:05:22,640 FOR DEVELOPING THE MEASURE. 1538 01:05:22,640 --> 01:05:24,640 IF WE DO NOT HAVE A GOOD MEASURE 1539 01:05:24,640 --> 01:05:27,520 TO CAPTURE THE EXPERIENCES, 1540 01:05:27,520 --> 01:05:29,080 THERE ARE RESILIENCE MEASURES 1541 01:05:29,080 --> 01:05:39,560 THAT CAN BE USED -- HAVE TO 1542 01:05:41,160 --> 01:05:44,200 START SOMEWHERE AND DO 1543 01:05:44,200 --> 01:05:47,720 QUALITATIVE RESEARCH. 1544 01:05:47,720 --> 01:05:50,080 BACKGROUNDS AND EXPERIENCES. 1545 01:05:50,080 --> 01:05:52,080 WHAT DOES RESILIENCE MEAN TO 1546 01:05:52,080 --> 01:05:53,520 THEM BECAUSE IT CAN BE 1547 01:05:53,520 --> 01:05:54,720 DIFFERENT. 1548 01:05:54,720 --> 01:05:57,400 THERE ARE SO MANY INNOVATIONS. 1549 01:05:57,400 --> 01:06:08,200 SO MUCH INNOV INNOVATIVE PRACTI. 1550 01:06:09,200 --> 01:06:12,360 RESEARCHERS -- COLLABORATE AND 1551 01:06:12,360 --> 01:06:16,120 LEARN FROM THEM AND THEIR WISDOM 1552 01:06:16,120 --> 01:06:18,680 AND DEVELOP A PROGRAM WITH THE 1553 01:06:18,680 --> 01:06:22,160 PRACTITIONERS AND CARE PARTNERS 1554 01:06:22,160 --> 01:06:23,480 AND CONTINUE DEVELOPING THE 1555 01:06:23,480 --> 01:06:24,520 RESEARCH ON RESILIENCE 1556 01:06:24,520 --> 01:06:27,960 CAREGIVING. 1557 01:06:27,960 --> 01:06:29,760 >>I'LL JUST SAY I DON'T HAVE 1558 01:06:29,760 --> 01:06:31,080 ANYTHING FURTHER TO ADD BUT 1559 01:06:31,080 --> 01:06:34,720 THANK YOU FOR HIGHLIGHTING THE 1560 01:06:34,720 --> 01:06:37,360 IMPORTANCE OF THE QUALITATIVE 1561 01:06:37,360 --> 01:06:38,520 ASPECT. 1562 01:06:38,520 --> 01:06:40,160 CORRELATING WITH THE LIVED CARE 1563 01:06:40,160 --> 01:06:40,720 GIVER. 1564 01:06:40,720 --> 01:06:43,640 ONCE WE HAVE THAT PERSPECTIVE 1565 01:06:43,640 --> 01:06:46,760 AND THE CONTINUED USE OF 1566 01:06:46,760 --> 01:06:48,400 MEASURES THEN WE CAN CERTAINLY 1567 01:06:48,400 --> 01:06:49,400 MOVE FORWARD. 1568 01:06:49,400 --> 01:06:52,880 PLEASE JUMP IN LORETTA. 1569 01:06:52,880 --> 01:06:54,640 >>IS SUCH AN IMPORTANT 1570 01:06:54,640 --> 01:06:55,040 QUESTION. 1571 01:06:55,040 --> 01:06:57,360 IF I COULD CHANGE ONE THING I 1572 01:06:57,360 --> 01:06:59,240 MIGHT CHANGE ONE THING. 1573 01:06:59,240 --> 01:07:03,680 I MENTIONED BRIEFLY THE 1574 01:07:03,680 --> 01:07:07,680 FACILITATOR -- LEGO SERIES PLAY 1575 01:07:07,680 --> 01:07:10,680 AND I'M A TRAINED FACILITATOR IN 1576 01:07:10,680 --> 01:07:13,040 THAT METHODOLOGY. 1577 01:07:13,040 --> 01:07:15,840 IT DOES JUST WHAT WE HEARD. 1578 01:07:15,840 --> 01:07:17,440 IT HELPS PEOPLE BUILD MEMORIES. 1579 01:07:17,440 --> 01:07:20,560 SO WHAT I TRY TO DO I STARTED MY 1580 01:07:20,560 --> 01:07:22,760 FOCUS WAS JUST SELFISH THING 1581 01:07:22,760 --> 01:07:24,600 BECAUSE IT WORKED VERY WELL. 1582 01:07:24,600 --> 01:07:27,240 I STARTED DOING IT AT ADULT DAY 1583 01:07:27,240 --> 01:07:29,720 PROGRAMS. 1584 01:07:29,720 --> 01:07:31,640 MEMORY CARE FACILITIES. 1585 01:07:31,640 --> 01:07:34,520 AND DURING COVID JOHNS HOPKINS 1586 01:07:34,520 --> 01:07:38,720 WAS MY LARGEST PARTNERS. 1587 01:07:38,720 --> 01:07:41,720 CAN YOU DO SOMETHING WITH THE 1588 01:07:41,720 --> 01:07:43,120 CAREGIVERS. 1589 01:07:43,120 --> 01:07:45,720 SO I STARTED BUILDING WITH THE 1590 01:07:45,720 --> 01:07:47,600 CAREGIVERS ON-LINE HOPE AND JOY 1591 01:07:47,600 --> 01:07:49,200 AND RESILIENCE. 1592 01:07:49,200 --> 01:07:51,160 AND THE WHOLE THING ALL DAY. 1593 01:07:51,160 --> 01:07:57,320 LAST WEDNESDAY WITH THE STAFF 1594 01:07:57,320 --> 01:07:59,320 AND IT'S STUNNING WHAT I HAD 1595 01:07:59,320 --> 01:08:00,640 THEM BUILD A BRIDGE TO 1596 01:08:00,640 --> 01:08:02,200 RESILIENCE WHEN YOU'RE FEELING 1597 01:08:02,200 --> 01:08:05,400 DOWN AND THE WHOLE PREMISES IS 1598 01:08:05,400 --> 01:08:07,280 EVERYBODY AGREES TO BUILD AND 1599 01:08:07,280 --> 01:08:08,600 SHARE. 1600 01:08:08,600 --> 01:08:12,440 LEGO CREATED IT AS A WAY TO GET 1601 01:08:12,440 --> 01:08:14,240 THEIR OWN BUSINESS TO 1602 01:08:14,240 --> 01:08:16,120 COMMUNICATE MORE EFFECTIVELY AND 1603 01:08:16,120 --> 01:08:18,320 TO LISTEN AND THAT ALL VOICES 1604 01:08:18,320 --> 01:08:22,560 ARE HEARD AND THAT IS PERFECT 1605 01:08:22,560 --> 01:08:24,160 FOR PEOPLE WITH DEMENTIA. 1606 01:08:24,160 --> 01:08:26,960 THAT WAS A WINNER FOR ME. 1607 01:08:26,960 --> 01:08:29,400 I WAS NOT OVERLOOKING THE 1608 01:08:29,400 --> 01:08:32,200 CAREGIVERS INTENTIONALLY. 1609 01:08:32,200 --> 01:08:35,880 HAVE I EVER TRACKED PEOPLE WITH 1610 01:08:35,880 --> 01:08:36,840 DEMENTIA BEFORE. 1611 01:08:36,840 --> 01:08:40,480 I COME WHO HAD NOT TALKED IN 1612 01:08:40,480 --> 01:08:42,120 YEARS TALKED AFTER I HAD THEM 1613 01:08:42,120 --> 01:08:46,920 BUILD THEIR FAVORITE VACATION. 1614 01:08:46,920 --> 01:08:49,880 AND PEOPLE WENT BIZERK AND FOR 1615 01:08:49,880 --> 01:08:52,320 THE CAREGIVERS IT'S SO 1616 01:08:52,320 --> 01:08:52,880 EMOTIONAL. 1617 01:08:52,880 --> 01:08:56,040 THEY WILL BUILD THIS LEGO BOX. 1618 01:08:56,040 --> 01:08:57,720 AND NOBODY IS GOING TO JUDGE YOU 1619 01:08:57,720 --> 01:08:59,080 BECAUSE THEY FELT LIKE THEY WERE 1620 01:08:59,080 --> 01:09:00,400 IN A BOX TOO. 1621 01:09:00,400 --> 01:09:02,880 SO EVERYBODY SHARES AND YOU FEEL 1622 01:09:02,880 --> 01:09:03,400 SAFE. 1623 01:09:03,400 --> 01:09:06,240 DIANA DID SUCH A GREAT JOB OF 1624 01:09:06,240 --> 01:09:08,160 TALKING ABOUT LORENZO'S HOUSE 1625 01:09:08,160 --> 01:09:09,240 AND THAT SPACE. 1626 01:09:09,240 --> 01:09:11,120 EVERYBODY IS BUILDING THIS THING 1627 01:09:11,120 --> 01:09:13,480 AND THE EMOTIONAL IS WHEN THEY 1628 01:09:13,480 --> 01:09:15,920 POINT TO THE DIFFERENT PIECES. 1629 01:09:15,920 --> 01:09:19,560 WHEN I ASKED MY MOM TO BUILD HOW 1630 01:09:19,560 --> 01:09:23,680 SHE FELT WITH HER DEMENTIA 1631 01:09:23,680 --> 01:09:28,960 DIAGNOSIS AND SHE POPPED THE 1632 01:09:28,960 --> 01:09:31,480 HEAD OFF AND SAID SHE FELT LIKE 1633 01:09:31,480 --> 01:09:34,960 SHE WAS LOSING HER HEAD. 1634 01:09:34,960 --> 01:09:40,120 THE THING WE HAVE TO REMEMBER -- 1635 01:09:40,120 --> 01:09:42,400 -- THE ONE THING DIFFERENTLY 1636 01:09:42,400 --> 01:09:45,520 WOULD BE TO NOT ONLY TRACK HOW 1637 01:09:45,520 --> 01:09:48,440 MY MOTHER PROCESSED MEMORIES, 1638 01:09:48,440 --> 01:09:49,480 SHE WAS ALWAYS BUILDING THAT 1639 01:09:49,480 --> 01:09:53,680 HOUSE THAT SHE GREW UP IN 1929. 1640 01:09:53,680 --> 01:09:55,640 I'M TALKING ABOUT THE HOUSE I 1641 01:09:55,640 --> 01:09:57,040 GREW UP IN. 1642 01:09:57,040 --> 01:09:58,920 SO THEY GO WAY BACK AND BUILD 1643 01:09:58,920 --> 01:10:01,280 THESE AMAZING THINGS. 1644 01:10:01,280 --> 01:10:03,160 SO WHEN THE "NEW YORK TIMES" 1645 01:10:03,160 --> 01:10:05,400 CAME AND SAID HOW CAN SHE DO 1646 01:10:05,400 --> 01:10:05,760 THAT. 1647 01:10:05,760 --> 01:10:08,800 BECAUSE SHE HAD THE BLANK STARE. 1648 01:10:08,800 --> 01:10:11,720 AND AT THE END HE SAID LET ME 1649 01:10:11,720 --> 01:10:14,160 SEE THE LEGO BRICKS. 1650 01:10:14,160 --> 01:10:17,240 SHE CAME RIGHT BACK TO LIFE. 1651 01:10:17,240 --> 01:10:18,840 OH, HELLO. 1652 01:10:18,840 --> 01:10:23,600 LIKE HE HAD JUST WALKED IN. 1653 01:10:23,600 --> 01:10:27,360 AND WHY CAN SHE DO THAT AND I 1654 01:10:27,360 --> 01:10:28,920 SAID I DON'T KNOW. 1655 01:10:28,920 --> 01:10:31,240 AND I DIDN'T CARE. 1656 01:10:31,240 --> 01:10:33,560 I WAS TOO BUSY TRYING TO BRING 1657 01:10:33,560 --> 01:10:34,440 THE JOY. 1658 01:10:34,440 --> 01:10:38,160 I WOULD LOOK AT HOW IT WORKS SO 1659 01:10:38,160 --> 01:10:40,920 HOW IT GOT -- BRINGS OUT THOSE 1660 01:10:40,920 --> 01:10:42,480 KIND OF MEMORIES THAT WE CAN 1661 01:10:42,480 --> 01:10:44,800 TRACK SO NOW WHEN I GO AND WORK 1662 01:10:44,800 --> 01:10:46,160 WITH PEOPLE WITH DEMENTIA 1663 01:10:46,160 --> 01:10:49,360 ESPECIALLY IF THEY TALK AGAIN 1664 01:10:49,360 --> 01:10:52,000 TRACK WHAT WE WERE DOING AT THE 1665 01:10:52,000 --> 01:10:54,440 TIME BUT THAT IS THE BEST THAT I 1666 01:10:54,440 --> 01:10:55,320 COULD DO. 1667 01:10:55,320 --> 01:10:57,840 THANKS. 1668 01:10:57,840 --> 01:10:59,400 >>AND CAN I ADD SOMETHING THAT 1669 01:10:59,400 --> 01:11:01,840 IS DIFFERENT -- I LOVE YOUR 1670 01:11:01,840 --> 01:11:02,560 ENERGY. 1671 01:11:02,560 --> 01:11:06,000 LET'S HAVE LUNCH. 1672 01:11:06,000 --> 01:11:09,560 AND EVERYBODY HERE -- A PLUG FOR 1673 01:11:09,560 --> 01:11:11,560 YOUNG PEOPLE WHO ARE WALKING 1674 01:11:11,560 --> 01:11:12,600 WITH THEIR PARENTS. 1675 01:11:12,600 --> 01:11:15,080 SO MANY OF THEM DON'T WANT TO BE 1676 01:11:15,080 --> 01:11:16,600 SEEN AS CAREGIVERS. 1677 01:11:16,600 --> 01:11:18,800 SO I SAY THAT WITH LOVE. 1678 01:11:18,800 --> 01:11:20,800 WE NEED RESEARCHERS WHO ARE 1679 01:11:20,800 --> 01:11:21,920 LOOKING SPECIFICALLY AT OUR 1680 01:11:21,920 --> 01:11:23,400 YOUNG PEOPLE. 1681 01:11:23,400 --> 01:11:24,840 WHO HAVE A PARENT BECAUSE THEY 1682 01:11:24,840 --> 01:11:28,680 ARE GOING TO KNOW THE DIAGNOSIS. 1683 01:11:28,680 --> 01:11:32,800 THEY ARE GOING TO UNDERSTAND 1684 01:11:32,800 --> 01:11:36,520 THIS BETTER THAN ANY OF US. 1685 01:11:36,520 --> 01:11:39,160 I'VE BEEN INTRODUCED TO THREE, 1686 01:11:39,160 --> 01:11:40,960 TWO IN THE UK AND ONE HERE WHO 1687 01:11:40,960 --> 01:11:44,120 ARE LOOKING AT YOUNGER CHILDREN 1688 01:11:44,120 --> 01:11:48,600 AND THAT KIND OF RESEARCH. 1689 01:11:48,600 --> 01:11:50,080 >>ABSOLUTELY AMAZING. 1690 01:11:50,080 --> 01:11:52,400 IT'S SO GOOD TO BE HERE AND YOUR 1691 01:11:52,400 --> 01:11:53,040 ENERGY. 1692 01:11:53,040 --> 01:11:55,240 I'M GETTING GOOSE BUMPS OVER 1693 01:11:55,240 --> 01:11:56,520 HERE. 1694 01:11:56,520 --> 01:12:02,600 SO THE NEXT QUESTION WE HAVE IS 1695 01:12:02,600 --> 01:12:07,200 WHAT PRACTICAL SUGGESTIONS DO 1696 01:12:07,200 --> 01:12:08,560 YOU HAVE FOR HEALTH CARE STAFF 1697 01:12:08,560 --> 01:12:10,920 TO SUPPORT AND ENHANCE 1698 01:12:10,920 --> 01:12:12,800 RESILIENCE IN THEIR PATIENCE OR 1699 01:12:12,800 --> 01:12:15,680 THE PEOPLE THAT THEY WORK WITH 1700 01:12:15,680 --> 01:12:19,760 NOT NECESSARILY PATIENTS. 1701 01:12:19,760 --> 01:12:21,160 >>WHO WANTS TO START WITH THAT 1702 01:12:21,160 --> 01:12:25,040 ONE? 1703 01:12:25,040 --> 01:12:26,840 WELL, I WILL TELL YOU WHAT 1704 01:12:26,840 --> 01:12:28,440 HAPPENED ON WEDNESDAY WHEN I 1705 01:12:28,440 --> 01:12:29,160 WENT. 1706 01:12:29,160 --> 01:12:31,960 IT USUALLY TAKES BETWEEN 90 1707 01:12:31,960 --> 01:12:34,000 MINUTES AND TWO HOURS SO THEY 1708 01:12:34,000 --> 01:12:36,760 CALL AND SAY -- I ONLY HAVE 30 1709 01:12:36,760 --> 01:12:38,320 MINUTES TO GIVE YOU FOR EACH 1710 01:12:38,320 --> 01:12:39,280 GROUP. 1711 01:12:39,280 --> 01:12:42,160 WE WENT TO EVERY FLOOR AND 1712 01:12:42,160 --> 01:12:45,240 WHOEVER WAS AVAILABLE THE CHEF, 1713 01:12:45,240 --> 01:12:48,280 THE PHYSICAL THERAPISTS, THE 1714 01:12:48,280 --> 01:12:48,680 HOUSEKEEPER. 1715 01:12:48,680 --> 01:12:50,920 WE THROUGH THEM AT TABLES AND 1716 01:12:50,920 --> 01:12:52,920 THEY WERE BUILDING TEAM 1717 01:12:52,920 --> 01:12:54,600 RESILIENCE. 1718 01:12:54,600 --> 01:12:57,480 THEY DIDN'T FEEL THAT SOME OF 1719 01:12:57,480 --> 01:12:59,040 THE PEOPLE BOUNCE BACK AFTER 1720 01:12:59,040 --> 01:13:02,360 COVID SO THEY WANTED TO LOOK AT 1721 01:13:02,360 --> 01:13:03,520 HOW THAT FELT. 1722 01:13:03,520 --> 01:13:05,320 SOME WAS STUNNING. 1723 01:13:05,320 --> 01:13:07,480 I HAD TO COME HOME AND 1724 01:13:07,480 --> 01:13:11,040 DECOMPRESS. 1725 01:13:11,040 --> 01:13:14,360 TWO DAYS LATER I GOT A NOTE FROM 1726 01:13:14,360 --> 01:13:17,240 THE CEO SAYING THEY ARE STILL AT 1727 01:13:17,240 --> 01:13:19,280 THEIR DESK BUILDING. 1728 01:13:19,280 --> 01:13:21,440 A STRESS REDUCER. 1729 01:13:21,440 --> 01:13:25,440 I THOUGHT IT WOULD BE GOOD. 1730 01:13:25,440 --> 01:13:27,760 THE RESULTS -- IT'S BEEN 1731 01:13:27,760 --> 01:13:28,280 STUNNING. 1732 01:13:28,280 --> 01:13:31,680 THE WHOLE BUILDING WAS BUZZING. 1733 01:13:31,680 --> 01:13:34,320 I CALLED IT SPEED LEGO AND WE 1734 01:13:34,320 --> 01:13:36,800 DID NINE SESSIONS WITH 92 PEOPLE 1735 01:13:36,800 --> 01:13:39,440 AND IT WAS ONE OF THE MOST 1736 01:13:39,440 --> 01:13:40,080 UNBELIEVABLE. 1737 01:13:40,080 --> 01:13:41,640 I NEVER MOVED THAT FAST IN MY 1738 01:13:41,640 --> 01:13:44,680 LIFE BUT IT WAS WORTH EVERY 1739 01:13:44,680 --> 01:13:46,840 SECOND TO SEE THEM CHEERING FOR 1740 01:13:46,840 --> 01:13:48,200 EACH OTHER. 1741 01:13:48,200 --> 01:13:50,200 THEY LEARNED STUFF FROM THAT 1742 01:13:50,200 --> 01:13:53,440 LEGO BUILD THAT THEY WOULD NEVER 1743 01:13:53,440 --> 01:13:56,760 SHARE IN A REGULAR CONVERSATION. 1744 01:13:56,760 --> 01:13:59,760 I'M HAVING THEM BUILD AND THAT 1745 01:13:59,760 --> 01:14:01,080 WAS YOUR POINT. 1746 01:14:01,080 --> 01:14:03,160 WHAT IS THE DEFINITION OF 1747 01:14:03,160 --> 01:14:05,720 RESILIENCE? 1748 01:14:05,720 --> 01:14:08,240 ONE PERSON HAD A THING -- TO 1749 01:14:08,240 --> 01:14:10,400 KEEP THEM FROM JUMP OFF THIS 1750 01:14:10,400 --> 01:14:10,800 BRIDGE. 1751 01:14:10,800 --> 01:14:12,800 IT WAS OUT THERE. 1752 01:14:12,800 --> 01:14:17,760 SO, THAT IS HOW I USE IT. 1753 01:14:17,760 --> 01:14:19,680 >>THANK YOU. 1754 01:14:19,680 --> 01:14:22,360 ANYBODY ELSE HAVE THOUGHTS ABOUT 1755 01:14:22,360 --> 01:14:23,360 PRACTITIONERS? 1756 01:14:23,360 --> 01:14:25,800 >>I HAVE A THOUGHT ACTUALLY I 1757 01:14:25,800 --> 01:14:27,760 HAVE TWO. 1758 01:14:27,760 --> 01:14:36,400 AND I WOULD LOVE TO ENCOURAGES E 1759 01:14:36,400 --> 01:14:39,080 DIANE AND LORETTA. 1760 01:14:39,080 --> 01:14:42,240 ONE IS ASK CAREGIVERS. 1761 01:14:42,240 --> 01:14:43,600 ACKNOWLEDGING THEM AND I HEAR 1762 01:14:43,600 --> 01:14:46,440 YOU DIANA ABOUT THE YOUNG 1763 01:14:46,440 --> 01:14:48,680 CAREGIVERS OR THOSE WHO DON'T 1764 01:14:48,680 --> 01:14:50,240 IDENTIFY THEMSELVES AS 1765 01:14:50,240 --> 01:14:51,840 CAREGIVERS ONE BECAUSE OF THEIR 1766 01:14:51,840 --> 01:14:54,320 AGE AND IN GENERAL THIS IS STILL 1767 01:14:54,320 --> 01:14:56,960 A CHALLENGE. 1768 01:14:56,960 --> 01:15:01,160 EVEN ASKING CAREGIVERS HOW THEY 1769 01:15:01,160 --> 01:15:05,840 ARARE. 1770 01:15:05,840 --> 01:15:06,720 ACKNOWLEDGING THEM. 1771 01:15:06,720 --> 01:15:08,520 SO, THAT IS THE FIRST THING. 1772 01:15:08,520 --> 01:15:11,280 AND THE SECOND THING IS I WOULD 1773 01:15:11,280 --> 01:15:15,680 ENCOURAGE THE NORMALIZATION OF 1774 01:15:15,680 --> 01:15:19,440 CAREGIVERS AND I'M USING THAT 1775 01:15:19,440 --> 01:15:23,000 TERM FOR NOW BUT TO CARE FOR 1776 01:15:23,000 --> 01:15:24,680 THEMSELVES. 1777 01:15:24,680 --> 01:15:26,840 IF YOU HEAR IT FROM YOUR 1778 01:15:26,840 --> 01:15:28,920 PROVIDER WHO IS LIKE WHEN WAS 1779 01:15:28,920 --> 01:15:32,720 THE LAST TIME YOU HAD A DOCTOR'S 1780 01:15:32,720 --> 01:15:35,280 APPOINTMENT OR WHEN DID YOU GET 1781 01:15:35,280 --> 01:15:36,920 YOUR TEETH CHECKED OUT AND 1782 01:15:36,920 --> 01:15:38,560 SAYING IT'S OKAY TO TAKE SOME 1783 01:15:38,560 --> 01:15:41,800 TIME FOR YOURSELF BECAUSE YOU 1784 01:15:41,800 --> 01:15:46,800 CANNOT POUR FROM AN EMPTY CUP. 1785 01:15:46,800 --> 01:15:48,560 NORMALIZES THOSE PIECES AND HOW 1786 01:15:48,560 --> 01:15:50,040 IMPORTANT IT IS FOR THE 1787 01:15:50,040 --> 01:15:51,880 CAREGIVERS TO FIND WAYS TO CARE 1788 01:15:51,880 --> 01:15:52,840 FOR THEMSELVES. 1789 01:15:52,840 --> 01:15:55,160 THOSE ARE MY THOUGHTS BUT I LOOK 1790 01:15:55,160 --> 01:15:59,480 TO YOU LORETTA AND DIANA FOR 1791 01:15:59,480 --> 01:16:06,080 YOUR EXPERIENCE AND WISDOM. 1792 01:16:06,080 --> 01:16:08,520 >>I THINK YOU HAVE CRUSHED IT 1793 01:16:08,520 --> 01:16:13,240 BY SAYING BY BEING ABLE TO STATE 1794 01:16:13,240 --> 01:16:13,640 IT. 1795 01:16:13,640 --> 01:16:16,200 ASK THE QUESTION AND I'LL ALWAYS 1796 01:16:16,200 --> 01:16:17,880 USE THAT LANGUAGE. 1797 01:16:17,880 --> 01:16:23,520 IT'S A DIAGNOSIS OF THE FAMILY. 1798 01:16:23,520 --> 01:16:25,640 USUALLY USE THE WORD CONDITION. 1799 01:16:25,640 --> 01:16:28,240 WE'RE A PART OF THIS AND WE'RE 1800 01:16:28,240 --> 01:16:30,880 -- WE HAVE NO IDEA THIS NEW 1801 01:16:30,880 --> 01:16:35,240 SPACE THAT WE'RE ENTERING INTO. 1802 01:16:35,240 --> 01:16:37,720 WE ARE IN SHOCK BUT THERE IS A 1803 01:16:37,720 --> 01:16:40,880 SENSE OF RELIEF SOMETIMES. 1804 01:16:40,880 --> 01:16:42,160 THERE IS AN ANSWER. 1805 01:16:42,160 --> 01:16:45,240 THE NEXT STEP IF SOMEONE TOLD ME 1806 01:16:45,240 --> 01:16:48,200 THE NEXT STEP IS NOT JUST ABOUT 1807 01:16:48,200 --> 01:16:50,680 LORENZO THAT WOULD HAVE SAVED ME 1808 01:16:50,680 --> 01:16:53,600 TIME. 1809 01:16:53,600 --> 01:16:59,920 YOU BECOME THIS MEDIOCRE 1810 01:16:59,920 --> 01:17:00,240 EVERYTHING. 1811 01:17:00,240 --> 01:17:04,680 -- I NEEDED MY OWN MOTHER TO SAY 1812 01:17:04,680 --> 01:17:09,160 DIANA KEEP AN EYE ON JUSTIN 1813 01:17:09,160 --> 01:17:11,840 BECAUSE YOU'RE SO FOCUSED ON 1814 01:17:11,840 --> 01:17:12,680 YOUR HUSBAND. 1815 01:17:12,680 --> 01:17:15,880 I THOUGHT I WAS STILL GIVING THE 1816 01:17:15,880 --> 01:17:18,960 LOVE BUT I GUESS IF WE CAN COME 1817 01:17:18,960 --> 01:17:21,760 UP WITH SOME MODEL SOME 1818 01:17:21,760 --> 01:17:23,520 UNIVERSAL WAY OF SAYING WITH 1819 01:17:23,520 --> 01:17:26,840 DEMENTIA AND I CAN ONLY SPEAK TO 1820 01:17:26,840 --> 01:17:29,000 THE DISEASE OF ALZHEIMER'S. 1821 01:17:29,000 --> 01:17:32,440 THE FAMILY WALKS THIS. 1822 01:17:32,440 --> 01:17:34,680 YES LORENZO WILL TAKE THIS PATH 1823 01:17:34,680 --> 01:17:36,880 BUT YOUR SONS AND YOU HAVE OTHER 1824 01:17:36,880 --> 01:17:40,440 CARE PATHS AND RECOGNIZE THAT. 1825 01:17:40,440 --> 01:17:43,040 I THINK THAT IS HUGE. 1826 01:17:43,040 --> 01:17:45,360 AND THE MODEL OF CARE TEAMS IS 1827 01:17:45,360 --> 01:17:54,200 BRILLIANT. 1828 01:17:54,200 --> 01:17:59,360 ABOUT THE NEUROLOGIST THAT CAME 1829 01:17:59,360 --> 01:17:59,520 IN. 1830 01:17:59,520 --> 01:18:03,320 HOW MANY -- DO YOU HAVE WHERE 1831 01:18:03,320 --> 01:18:06,640 YOU SAY YOU'RE NOT MY 1832 01:18:06,640 --> 01:18:10,080 NEUROLOGIST. 1833 01:18:10,080 --> 01:18:11,920 WE'VE GOT SO MANY FAMILIES 1834 01:18:11,920 --> 01:18:14,920 COMING FROM RURAL KENTUCKY AND 1835 01:18:14,920 --> 01:18:16,160 OKLAHOMA AND UTAH. 1836 01:18:16,160 --> 01:18:20,160 BUT THAT IDEA OF THAT CARE TEAM. 1837 01:18:20,160 --> 01:18:24,680 SO A DR. AND THIS TEAM WAS A 1838 01:18:24,680 --> 01:18:27,160 UNIT THAT CLOSED IN OURS AND I 1839 01:18:27,160 --> 01:18:29,800 HAD TO LOOK FOR THAT AND I AM IN 1840 01:18:29,800 --> 01:18:32,440 A CITY WHERE I HAVE THOSE 1841 01:18:32,440 --> 01:18:34,040 RESOURCES AND I'LL STOP. 1842 01:18:34,040 --> 01:18:35,560 I TALK TOO MUCH 1843 01:18:35,560 --> 01:18:38,640 >>THERE IS NO TALKING TOO MUCH. 1844 01:18:38,640 --> 01:18:41,560 >>I WOULD ADD TO THAT GETTING 1845 01:18:41,560 --> 01:18:44,680 CAREGIVING INTO CURRICULUM OF 1846 01:18:44,680 --> 01:18:46,560 WORKFORCE AND MAKING SURE THAT 1847 01:18:46,560 --> 01:18:47,920 THEY THEY THE SAME LANGUAGE. 1848 01:18:47,920 --> 01:18:49,920 I'M NOT THE EXPERT THAT YOU ARE 1849 01:18:49,920 --> 01:18:53,520 BUT I'VE LIVED THIS TOO AND NOT 1850 01:18:53,520 --> 01:18:55,680 MY MOTHER WAS OLDER. 1851 01:18:55,680 --> 01:18:58,840 BUT MY GRANDMOTHER HAD THE EARLY 1852 01:18:58,840 --> 01:19:02,080 ONSET SO I GET IT AND WHAT WE DO 1853 01:19:02,080 --> 01:19:06,360 AT ACL GETTING IT INTO THE 1854 01:19:06,360 --> 01:19:08,240 WORKFORCE DEVELOPMENT AND THE 1855 01:19:08,240 --> 01:19:14,520 WORKFORCE IS SUPER IMPORTANT. 1856 01:19:14,520 --> 01:19:22,680 LET'S SEE ... SO DO ANY OF YOU 1857 01:19:22,680 --> 01:19:26,440 HAVE ANY THOUGHTS ON THE IMPACT 1858 01:19:26,440 --> 01:19:31,160 OF SUPPORT GROUPS ON CARE GIVER 1859 01:19:31,160 --> 01:19:32,960 RESILIENCE OVER TIME? 1860 01:19:32,960 --> 01:19:34,680 THAT QUESTION CAME IN FROM OUR 1861 01:19:34,680 --> 01:19:42,720 WATCHERS. 1862 01:19:42,720 --> 01:19:45,800 >>THEY FEEL CAMARADERIE IN THE 1863 01:19:45,800 --> 01:19:46,320 GROUP. 1864 01:19:46,320 --> 01:19:50,400 SO I CO-MODERATE A FACEBOOK 1865 01:19:50,400 --> 01:19:52,280 SUPPORT GROUP AND AGAIN PEOPLE 1866 01:19:52,280 --> 01:19:56,520 KNOW AND THE AARP FAMILY CARE 1867 01:19:56,520 --> 01:19:58,120 GIVER DISCUSSION GROUP TOO. 1868 01:19:58,120 --> 01:20:00,360 YOU SEE PEOPLE PUT IN ACTUAL 1869 01:20:00,360 --> 01:20:02,920 TRUTH BECAUSE THEY KNOW, TODAY 1870 01:20:02,920 --> 01:20:05,040 WAS THE WORST DAY EVER. 1871 01:20:05,040 --> 01:20:07,280 I CAN'T BELIEVE YOU SAID THAT 1872 01:20:07,280 --> 01:20:09,600 OUT LOUD BUT YOU HAVE TO SAY 1873 01:20:09,600 --> 01:20:10,640 THAT. 1874 01:20:10,640 --> 01:20:11,920 HOW ARE YOU DOING? 1875 01:20:11,920 --> 01:20:14,120 I WAS NOT FINE AND I WAS NOT 1876 01:20:14,120 --> 01:20:16,000 GOING TO SAY I WAS. 1877 01:20:16,000 --> 01:20:17,960 WE HAVE TO BE HONEST AND THEN 1878 01:20:17,960 --> 01:20:20,240 PEOPLE REALLY RESPECT THAT. 1879 01:20:20,240 --> 01:20:22,480 THANK YOU FOR SHARING THAT. 1880 01:20:22,480 --> 01:20:26,800 I FEEL LIKE I CAN TALK TO YOU. 1881 01:20:26,800 --> 01:20:29,040 NOT JUST HELPFUL. 1882 01:20:29,040 --> 01:20:32,040 THEY CAN BE LIFESAVING IN SOME 1883 01:20:32,040 --> 01:20:32,760 CASES. 1884 01:20:32,760 --> 01:20:34,560 WE'VE MADE SOME CALLS WHERE WE 1885 01:20:34,560 --> 01:20:37,320 THOUGHT -- I USED TO GET UP AT 1886 01:20:37,320 --> 01:20:38,960 4:00 IN THE MORNING AND GO TO 1887 01:20:38,960 --> 01:20:43,400 WORK -- A WOMAN IN CANADA WHO 1888 01:20:43,400 --> 01:20:50,360 WAS IN A HA -- A SUPPORT GROUP O 1889 01:20:50,360 --> 01:20:52,360 SAID SOME THINGS THAT CONCERNED 1890 01:20:52,360 --> 01:21:02,960 US AND THE RO -- ROYAL CANADIAN 1891 01:21:05,360 --> 01:21:06,920 POLICE WE GOT TO GO TO HER 1892 01:21:06,920 --> 01:21:08,480 HOUSE. 1893 01:21:08,480 --> 01:21:14,600 THEY WANT DAD TO COME SEE THEM 1894 01:21:14,600 --> 01:21:23,960 PLAY B-- PLAY BASKETBALL LIKE HD 1895 01:21:23,960 --> 01:21:25,200 TO. 1896 01:21:25,200 --> 01:21:28,840 EVERYBODY LOOKS GOOD. 1897 01:21:28,840 --> 01:21:30,720 NOBODY LOOKS LIKE THEY ARE ABOUT 1898 01:21:30,720 --> 01:21:34,400 TO GO OVER THE CLIFF. 1899 01:21:34,400 --> 01:21:36,360 I FELT LIKE THAT WAS MY 1900 01:21:36,360 --> 01:21:37,920 RESPONSIBILITY TO SEE HOW PEOPLE 1901 01:21:37,920 --> 01:21:39,720 WERE. 1902 01:21:39,720 --> 01:21:42,960 >>YOU KNOW AT LORENZO'S HOUSE 1903 01:21:42,960 --> 01:21:46,240 WHAT HAS HAPPENED ORGANICALLY -- 1904 01:21:46,240 --> 01:21:49,680 AND AGAIN YOU'VE GOT NOW WE HAVE 1905 01:21:49,680 --> 01:21:52,080 SOMETHING CALLED OUR BRIGHT 1906 01:21:52,080 --> 01:21:52,640 BRUNCH. 1907 01:21:52,640 --> 01:21:53,440 WHERE WOMEN HANGOUT. 1908 01:21:53,440 --> 01:21:55,960 IT'S A FORMAT WHERE THERE MIGHT 1909 01:21:55,960 --> 01:21:58,080 BE 50 OF US AND WE BREAK INTO 1910 01:21:58,080 --> 01:22:00,640 GROUPS OF 10 AND THEN CARES 1911 01:22:00,640 --> 01:22:03,560 GUIDE THAT. 1912 01:22:03,560 --> 01:22:06,160 THAT HAS BECOME A WOMEN'S GROUP. 1913 01:22:06,160 --> 01:22:07,960 THIS IS WHERE WE ARE TODAY AND 1914 01:22:07,960 --> 01:22:13,120 THEN A COUPLE OF GUYS AND THEY 1915 01:22:13,120 --> 01:22:17,880 SAID -- AND NOW A LIGHT LOUNGE 1916 01:22:17,880 --> 01:22:19,120 FOR MEN. 1917 01:22:19,120 --> 01:22:23,600 TWO MEN. 1918 01:22:23,600 --> 01:22:25,600 ONE FROM CALIFORNIA AND ONE FROM 1919 01:22:25,600 --> 01:22:27,040 MICHIGAN. 1920 01:22:27,040 --> 01:22:30,160 THEY CREATED THIS AND NOW THERE 1921 01:22:30,160 --> 01:22:33,240 ARE OVER 40 MEN AT THE LIGHT 1922 01:22:33,240 --> 01:22:33,480 LOUNGE. 1923 01:22:33,480 --> 01:22:35,960 THIS IS THE BEST 90 MINUTES OF 1924 01:22:35,960 --> 01:22:37,120 MY MONTH. 1925 01:22:37,120 --> 01:22:39,080 >>THAT IS SO COOL AND THEY ARE 1926 01:22:39,080 --> 01:22:42,120 ALL THERE TALKING ABOUT IN THEIR 1927 01:22:42,120 --> 01:22:48,520 MALE -- IT'S A MALE CARE GROUP. 1928 01:22:48,520 --> 01:22:50,840 I DON'T KNOW HOW YOU MEASURE ALL 1929 01:22:50,840 --> 01:22:53,400 OF THAT AND WHAT THAT DOES. 1930 01:22:53,400 --> 01:22:55,000 BUT THESE KINDS OF GROUPS AND 1931 01:22:55,000 --> 01:22:57,320 WHAT I'M FINDING IS THAT WHEN 1932 01:22:57,320 --> 01:22:59,400 YOU'RE GETTING PEOPLE NARROWING 1933 01:22:59,400 --> 01:23:01,360 DOWN INTO YOUR PROFILE. 1934 01:23:01,360 --> 01:23:04,880 YOUNGER KIDS WHO HAVE A PARENT. 1935 01:23:04,880 --> 01:23:07,040 AND SOMEBODY WHO'S YOUNGER WITH 1936 01:23:07,040 --> 01:23:07,520 KIDS. 1937 01:23:07,520 --> 01:23:09,960 I CAN'T SAY ENOUGH -- AND I'M 1938 01:23:09,960 --> 01:23:11,480 NOT A BIG JOINER. 1939 01:23:11,480 --> 01:23:14,360 I WOULD RATHER DO THE ONE-ON-ONE 1940 01:23:14,360 --> 01:23:16,280 THING BUT YOU BEGIN TO JOIN IN 1941 01:23:16,280 --> 01:23:18,600 AND LEAN IN AND BECOME A PART OF 1942 01:23:18,600 --> 01:23:20,440 THE SISTERHOOD. 1943 01:23:20,440 --> 01:23:23,600 IT'S A BROTHERHOOD. 1944 01:23:23,600 --> 01:23:24,720 IT IS FAMILY. 1945 01:23:24,720 --> 01:23:28,080 THERE IS SUCH A VISUAL DEEP, 1946 01:23:28,080 --> 01:23:30,600 LIKE I GOT YOU * BECAUSE THE 1947 01:23:30,600 --> 01:23:31,720 JOURNEY IS SO HARD. 1948 01:23:31,720 --> 01:23:34,800 THERE IS SO MUCH GOING ON. 1949 01:23:34,800 --> 01:23:35,280 OKAY. 1950 01:23:35,280 --> 01:23:36,600 I GOT YOU. 1951 01:23:36,600 --> 01:23:38,480 IT CONNECTS US AND IT'S GOING 1952 01:23:38,480 --> 01:23:40,520 BACK TO THE POWER OF CONNECTION. 1953 01:23:40,520 --> 01:23:42,680 IF YOU DO NOTHING BUT THAT WE 1954 01:23:42,680 --> 01:23:44,600 CAN BREATHE BETTER. 1955 01:23:44,600 --> 01:23:46,840 AS PEOPLE WALK IN THIS. 1956 01:23:46,840 --> 01:23:51,320 >>I'M CLOSER TO SOME OF THOSE 1957 01:23:51,320 --> 01:23:54,120 PEOPLE THAN TO SOME PEOPLE IN MY 1958 01:23:54,120 --> 01:23:54,800 OWN FAMILY. 1959 01:23:54,800 --> 01:23:56,480 THAT IS ABSOLUTELY TRUE. 1960 01:23:56,480 --> 01:23:58,240 I WOULD DRIVE FOR MILES AND 1961 01:23:58,240 --> 01:24:00,480 MILES TO SEE SOME OF THESE 1962 01:24:00,480 --> 01:24:01,360 PEOPLE IN PERSON. 1963 01:24:01,360 --> 01:24:04,600 YOU ARE SISTERS BY THEN. 1964 01:24:04,600 --> 01:24:07,360 SO, ITS AMAZING. 1965 01:24:07,360 --> 01:24:08,800 >>YEAH. 1966 01:24:08,800 --> 01:24:10,480 >>TALK ABOUT SILVER LINING. 1967 01:24:10,480 --> 01:24:11,160 THERE IT IS. 1968 01:24:11,160 --> 01:24:17,600 YOU'VE GOT A NEW FAMILY. 1969 01:24:17,600 --> 01:24:18,360 >>THIS HAS BEEN GREAT. 1970 01:24:18,360 --> 01:24:20,880 THANK YOU SO MUCH FOR YOUR TIME 1971 01:24:20,880 --> 01:24:23,560 FOR YOUR HONESTY. 1972 01:24:23,560 --> 01:24:25,280 GOT A LITTLE RAW FOR ME AT 1973 01:24:25,280 --> 01:24:25,680 LEAST. 1974 01:24:25,680 --> 01:24:28,040 I DON'T KNOW IF IT GOT A LITTLE 1975 01:24:28,040 --> 01:24:29,960 RAW FOR YOU. 1976 01:24:29,960 --> 01:24:31,920 WE SO APPRECIATE YOU BEING 1977 01:24:31,920 --> 01:24:33,640 WILLING TO SHARE YOUR 1978 01:24:33,640 --> 01:24:35,400 EXPERIENCES AND YOUR WISDOM WITH 1979 01:24:35,400 --> 01:24:36,240 US. 1980 01:24:36,240 --> 01:24:38,920 WE DO HAVE THIS SERIES JUST FOR 1981 01:24:38,920 --> 01:24:41,520 THIS. 1982 01:24:41,520 --> 01:24:44,120 THE WEBINAR WAS RECORDED SO IT 1983 01:24:44,120 --> 01:24:46,760 WILL BE POSTED ON THIS LAST 1984 01:24:46,760 --> 01:24:48,280 SLIDE IT SHOWS WHERE IT'S 1985 01:24:48,280 --> 01:24:49,680 POSTED. 1986 01:24:49,680 --> 01:24:53,440 IF YOU DON'T SEE THE SLIDE HIT 1987 01:24:53,440 --> 01:24:55,720 FOCUS ON AGING IN YOUR GOOGLE 1988 01:24:55,720 --> 01:24:58,520 AND IT WILL COME RIGHT UP 1989 01:24:58,520 --> 01:25:02,360 BECAUSE NIA MUST DO AN AMAZING 1990 01:25:02,360 --> 01:25:05,920 JOB IN THEIR SET UPS FOR 1991 01:25:05,920 --> 01:25:06,640 AWARENESS. 1992 01:25:06,640 --> 01:25:08,600 I WANT TO THANK EACH AND EVERY 1993 01:25:08,600 --> 01:25:11,400 ONE OF YOU FOR BEING WITH US. 1994 01:25:11,400 --> 01:25:13,960 AND TAKING THE TIME TO SHARE 1995 01:25:13,960 --> 01:25:19,920 THIS WITH OUR GROUP. 1996 01:25:19,920 --> 01:25:21,960 I DON'T HAVE ANYTHING ELSE TO 1997 01:25:21,960 --> 01:25:22,360 SAY. 1998 01:25:22,360 --> 01:25:24,720 BUT THANK YOU, THANK YOU. 1999 01:25:24,720 --> 01:25:27,000 HOPEFULLY WE'LL CONTINUE TO 2000 01:25:27,000 --> 01:25:27,200 LEARN. 2001 01:25:27,200 --> 01:25:29,440 MAYBE WE SPARKED A LITTLE BIT OF 2002 01:25:29,440 --> 01:25:30,920 RESEARCH DEVELOPMENT AND SOME OF 2003 01:25:30,920 --> 01:25:33,160 IDEAS IN SOME RESEARCHERS HEADS 2004 01:25:33,160 --> 01:25:35,920 ABOUT WHO NEEDS TO BE THINKING 2005 01:25:35,920 --> 01:25:37,760 ABOUT WHO AND TALKING ABOUT WHO. 2006 01:25:37,760 --> 01:25:42,600 AND GETTING SOME ANSWERS FOR 2007 01:25:42,600 --> 01:25:45,600 WORKING WITH YOUTH AND GETTING 2008 01:25:45,600 --> 01:25:48,160 THAT RESILIENCE FRONT AND 2009 01:25:48,160 --> 01:25:50,080 CENTER. 2010 01:25:50,080 --> 01:25:53,960 SO THAT EVERYBODY SURVIVES. 2011 01:25:53,960 --> 01:25:54,240 >>YES. 2012 01:25:54,240 --> 01:25:56,480 THANK YOU SO MUCH FOR HAVING ME. 2013 01:25:56,480 --> 01:26:01,600 I PUT MY INFORMATION IN THE CHAT 2014 01:26:01,600 --> 01:26:02,120 BOX. 2015 01:26:02,120 --> 01:26:04,960 >>I HOPE YOU ALL HAVE A GREAT 2016 01:26:04,960 --> 01:26:06,280 REMAINDER OF YOUR DAY. 2017 01:26:06,280 --> 01:26:08,000 IF YOU HAVE ANY QUESTIONS FOR 2018 01:26:08,000 --> 01:26:10,560 ANY OF US ON THE FEDERAL 2019 01:26:10,560 --> 01:26:12,040 PARTNER'S TEAM PLEASE REACH OUT 2020 01:26:12,040 --> 01:26:13,200 TO US. 2021 01:26:13,200 --> 01:26:14,560 WE WILL GET BACK TO YOU AS SOON 2022 01:26:14,560 --> 01:26:15,320 AS WE CAN. 2023 01:26:15,320 --> 01:26:16,680 IF YOU HAVE ANY OTHER QUESTIONS. 2024 01:26:16,680 --> 01:26:17,000 THANK YOU SO MUCH. 2025 01:26:17,000 --> 00:00:00,000 EVERYONE HAVE A GREAT DAY.