Independent Lens Season 26 Episode 17
-------------------------------
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Short filmTranscript
00:00The same question twice.
00:02What do you want for dinner?
00:03Five minutes later.
00:04What do you want for dinner?
00:14He was misplacing items, his wallet, glasses, his telephone.
00:30She would be driving somewhere, and all of a sudden she couldn't remember where she was going.
00:41Where, where is that? I don't, you know, I don't have it at times.
00:47It's all gone.
00:48Where'd it go? Huh?
00:50Where did it go?
00:51In the toilet.
00:53I figured.
00:55It's harder for you sometimes now to say what you want to say.
01:00You know, to get the exact words out that you want to say.
01:03Ba-da-ba-ba-da-ba.
01:05Exactly.
01:05Like I said.
01:10When you realize that the person you love most in the world has Alzheimer's,
01:18half your life falls away in the moment.
01:24Everything has changed.
01:30What do you want to say?
01:31What do you want to say?
01:32What do you want to say?
01:32What do you want to say?
01:33What do you want to say?
01:34What do you want to say?
01:34What do you want to say?
01:35What do you want to say?
01:35What do you want to say?
01:36What do you want to say?
01:36What do you want to say?
01:37What do you want to say?
01:37What do you want to say?
01:38What do you want to say?
01:39What do you want to say?
01:39What do you want to say?
01:40What do you want to say?
01:41What do you want to say?
01:42What do you want to say?
01:43What do you want to say?
01:44What do you want to say?
01:45What do you want to say?
01:46What do you want to say?
01:47What do you want to say?
01:48Ma, catch.
02:04Whoa.
02:07He just got that one.
02:10You have to slow down a little bit because I just don't want to.
02:17Okay.
02:18I felt some attitude in that throw.
02:24You are a worthy opponent.
02:29Since my mother's Alzheimer's journey has started, I've become her caregiver.
02:36I decided to move my mom in with me.
02:39Wow.
02:40Wow.
02:41Look at that.
02:44That is a cute look.
02:45She's a sweet one.
02:49She helps me.
02:53And she does that pretty good, too.
02:55Yeah?
02:56Mm-hmm.
02:57She does that pretty good.
02:58There you go.
03:04Whoa.
03:05There you go.
03:07Hmm.
03:08I'm a property manager.
03:17Love you.
03:18All right.
03:18Love you.
03:19My mom does stay home while I go to work full-time in an office.
03:24It's killing me every morning to leave her.
03:32Are you enjoying the weather?
03:51Yeah.
03:51It doesn't matter what the weather is.
03:53I always enjoy it.
03:55Yeah?
03:55That's good.
03:56Even when I was in the Navy, out in the middle of the ocean, and the waves were going over
04:05you, we had weather gear on, but you're wet.
04:11What do you think?
04:12Do you think it looks good?
04:13I think you ought to take it all off.
04:15Take it all off?
04:16Take it all off.
04:19Just doing this way.
04:20Keep all the little hairs off you.
04:23Voila.
04:25You look just like your dad.
04:34I was an illustrator dressman in the Navy, and I worked at Sac State University in media
04:43services.
04:46And then I went on doing art and this and that.
04:53This is wood on the outside, but this is metal.
05:01It's all plywood, which you really can't tell, but the plywood is not flat this way, it's plywood
05:09this way.
05:11And then I got these old masks that I made.
05:16of my face, and I cut them in half and painted them, and put them into there.
05:23It's just fooling around, you know.
05:24Leave my hair on, okay?
05:37I wasn't planning on it.
05:41Me and my dad had always had a close relationship.
05:44He was a man's man, an artist, strong work ethic.
05:51I left my career in the events industry and moved back home to be my dad's caregiver, and he didn't
06:17like it.
06:18I was encroaching on his independence.
06:23He would say I was beliling him.
06:28Yeah, it's good to have somebody around to help you.
06:36I mean, since I don't have a wife right now, he's like a wife.
06:45Where's your napkin?
06:45My dad is not really aware that there may be something wrong with him, that he's dependent
06:54upon someone being there.
07:04So this goes off to the right side.
07:06I get this.
07:07I got it.
07:08Mm-hmm.
07:09Okay.
07:10Okay.
07:12Okay, wait.
07:13Before you come down, take the string onto the right, the string that's to the right.
07:19Da-da-da-da-da-da-da.
07:23Da-da-da-da-da.
07:24Da-da-da-da-da.
07:25Da-da-da.
07:26Da-da-da.
07:27Da-da-da.
07:28Da-da-da-da-da-da-da.
07:29Ba-ra-ra-pum-pum-pum-pum.
07:30Yeah.
07:31Yeah.
07:32Yeah.
07:33Yeah.
07:34Yeah.
07:35um this is our photograph this is me or was me it still is and this is Janice this is um
07:54olives I mean not olives what are they anyway it is um it's a very wide
08:05Sue and I have been together for 45 years
08:11here feel that yep oh this one's a little softer softer that's what we want is a little softer
08:20okay is that good Janice is Janice she's a lovely lovely girl yes that's true
08:31oh look at this the relationship has changed from being partners equal partners to caregiver and
08:42partner there we go breakfast is served oh my goodness is that good you know what I feel like
08:54sometimes I feel like a single mother got to take care of the kid you got to cook for the kid you
09:00got to pick up after the kid you got to help make sure the kid is clean here that's for you
09:05here you didn't get your pillows here yes here honey I had no choice but to keep going
09:14put on my big girl pants and and take care of things and do what I need to do
09:20you like that one this is a pretty color no what about this no man all right I'm striking out here
09:46my mom was a single mom
09:50and I'm an only child
09:54so there was a really close relationship there because it was just the two of us
10:01going to church together singing together her and I have just done everything together it was her
10:07little shadow in a lot of ways best friends
10:13my mom was a sewer professionally she also sewed a lot at home she sewed my clothes
10:24she was really really excellent at it and super hard working
10:29lately my mom's become more and more attached
10:42you okay sound exhausted yeah I am a little bit I um yeah I'm just having a bad day
11:03you're having a bad day why are you having a bad day
11:06because I was like okay I wanted to get um
11:10I wanted to get stuff done I wanted like oh yeah I'd like to be able to do this and
11:17and then um
11:19and I was like oh boy
11:23it's okay mom
11:24take a breather
11:26yeah I um
11:29okay
11:30all right
11:31okay
11:32I am starting to look for a job where I can be able to work from home
11:39I told her I said yeah I want to try and find a job mom
11:44so that I can work from home and stay here with you
11:47and she's like yeah I want that too
11:49she told me
11:52I'm gonna be praying that God brings you a job like that
11:56oh
11:57nice
11:59get it girl
12:01hello
12:15good morning sunshine
12:18I'm gonna make some breakfast
12:23and then we're gonna go to the doctor's office
12:28no
12:31I'm just staying in bed
12:34come on pop
12:42we got an appointment
12:44at 10 o'clock
12:46we need to get there soon
12:47okay pop
12:49yay we found a spot
13:14hello
13:19hey how you doing
13:20great to see you both
13:22so today I'm gonna read a list of words to you okay
13:28I want you to repeat the words back to me okay
13:32okay
13:33face
13:35velvet
13:36church
13:37daisy
13:38red
13:39with a daisy in there
13:43and something else and I forgot what it was
13:47no I'm having a hard time doing that one
13:51okay
13:52yeah
13:52now could you tell me today's date
13:55what's that
13:56today's date
13:57good question
14:00heck I don't know
14:04let's start uh with the year what year are we in
14:11I don't even remember that either
14:182000 something
14:20okay
14:2110 maybe
14:232010
14:23okay
14:24the CT scan looks at the density of the brain
14:32there's one particular area that we want to look at in Alzheimer's and that's your
14:37type of canvas
14:39in Alzheimer's we find that these two will start shrinking
14:44and so just from looking at this we would expect that you'd be having trouble forming new memories
14:52so you can see that you have quite a bit of space here
15:07I see a lion there
15:14yes
15:15wow that was great holy Hannah
15:34I first met Janice when
15:41she was
15:44at the beach
15:46well at the beach
15:48but I forgot
15:50where
15:51or
15:52how many days it was
15:55before
15:56I
15:57met
15:58Janice
15:59at the beach
16:01it was glorious
16:04I looked up
16:08and I saw this blonde
16:09because she was blonde
16:10and I was like oh my god
16:11she's gorgeous
16:12gracious
16:16fun
16:18caring
16:19give you the shirt off of her back
16:22she was something to behold
16:26we went shopping
16:30in a consignment shop
16:32and bought two wedding gowns
16:34and you took them apart
16:35and made the costume
16:37and she walked into some great big huge gay nightclub
16:42and people like went crazy over this outfit
16:48all eyes went
16:49on to you from this
16:51this was a great night
16:52I could always think of the people looking at me going what's she doing with her
17:01and I'd be like uh-huh eat your hearts out
17:04eat your hearts out
17:05she's with me
17:06let's do your exercises
17:10okay
17:11okay
17:13come up
17:14you gotta stand here
17:15you have a bad hip
17:17knees
17:17I don't have a bad hip
17:19so you're gonna take
17:22your right foot
17:23put it over your left foot
17:24no
17:26come back
17:26come back to here
17:27no no
17:28wrong way
17:29yeah
17:31and what I
17:32and you're supposed to just lean into the wall
17:34this way a little bit
17:36just a little
17:37no
17:37no
17:37no
17:38I had enough
17:39wait
17:39let's just rest for a sec
17:43let's just rest for a sec
17:44because if you don't do it
17:45you don't get better
17:46okay
17:47I won't get better?
17:48yes
17:49you have bursitis
17:50you have a bursitis
17:51it's very difficult
17:51and you have a lot of pain
17:53okay
17:54when you walk
17:54and here
17:56see our little head
17:57goes this way
17:58this is my
17:59head
18:00okay
18:03let's try it one more time
18:05okay
18:05all right here
18:07this foot
18:09over that foot
18:10okay
18:11I
18:11done
18:20Sue
18:20sometimes she gets very impatient
18:22and gets mad at me
18:24sometimes
18:26she takes off
18:27outside
18:28and then she's off
18:29on a tear
18:30and there's no stopping her
18:32I have
18:36an Apple watch
18:38on her wrist
18:39that we can track
18:40her
18:43iPhone
18:45hopefully
18:45put in her pocket
18:47you have reached
18:50Sue DeNaro
18:51I'm looking for your purse
19:18so we can get your toothbrush
19:19do you know where your purse is mom?
19:28not under the mattress
19:29found it
19:33it's wrapped up in your
19:34oh it's in that
19:35wrapped up in your shirt
19:36that's good
19:38okie doke
19:41yeah
19:42and I have to
19:46we live in
19:51a small
19:52northern
19:53lakeshore town
19:54here in Michigan
19:55there's very little
19:58resources for
19:59caregivers
19:59I don't have
20:02anyone
20:03locally
20:03that can help
20:05support
20:05I feel like
20:08on an island
20:09on our own
20:10so I started
20:14sharing on
20:14Instagram
20:15there are a lot
20:17of things that I'm
20:18learning
20:18as a caregiver
20:20to my mom
20:20with young
20:21onset Alzheimer's
20:23I'm hoping to
20:29find some people
20:30that are
20:31navigating this
20:32disease as well
20:33do you notice
20:37anything
20:38about this bed
20:39she has been
20:43sleeping on
20:43all of that
20:44I don't understand
20:46but you know what
20:47it's not for me
20:47to understand
20:48it is what it is
20:49it's her world
20:51and we're just
20:51all living in it
20:53alright
20:54I've got a towel
20:55for ya
20:56I will leave you
20:59to it
21:00I have
21:03definitely
21:04thought about
21:04moving
21:05maybe to
21:06Grand Rapids
21:07Grand Rapids
21:12is much bigger
21:13than
21:14Ludington
21:14and it's
21:15closer to
21:16my hometown
21:17so I can be
21:19closer to
21:20friends
21:21family
21:21and more
21:23support
21:24options
21:25but in
21:28order to
21:29move
21:29I have to
21:31find a job
21:32where I can
21:32work from
21:33home
21:33hi
21:44how are ya
21:47ah
21:47better now
21:49that's good
21:53for now
21:54okay
21:54I met Carlos
21:59many years ago
22:01through his
22:01wife
22:02Maria
22:03and then
22:04after Maria
22:05passed away
22:06after a while
22:07I got used
22:08to having
22:09Carlos as a
22:10friend
22:10and then
22:11eventually
22:11we started
22:12going out
22:13you and I
22:14just started
22:15gabbing on
22:16the phone
22:16and then
22:18you said
22:18to me
22:18hey
22:19do you
22:19like jazz
22:20remember
22:22I don't
22:24quite remember
22:25all that
22:26now
22:26I'm losing
22:28the stuff
22:28in my
22:29brain
22:29we had
22:33been going
22:33out for
22:34about
22:34six years
22:36when I
22:37started
22:37noticing
22:38the
22:39change
22:40so how
22:41was your
22:42day today
22:43so far
22:43good
22:44we had
22:44a lot
22:45of fun
22:45together
22:46going to
22:47concerts
22:47and art
22:48galleries
22:49and I
22:50felt a big
22:51loss
22:51because the
22:53person I
22:53knew
22:54was no longer
22:56that person
22:57did you
22:59did you
22:59guys go
22:59for donuts
23:00this morning
23:00uh
23:01today
23:04we don't
23:06have a
23:06relationship
23:07much anymore
23:08because I'm
23:09a caregiver
23:10for my
23:11mom
23:11both of
23:13us are
23:14kind of
23:14stuck
23:15in our
23:16situations
23:17but
23:19I still
23:19consider him
23:20my
23:20sweetheart
23:21your
23:25hanger
23:25fell
23:26again
23:26I'll
23:27have
23:28to
23:28come
23:28back
23:28and
23:28fix
23:29it
23:29like
23:30you
23:30don't
23:30have
23:30anything
23:31else
23:31to do
23:32his
23:33son
23:34has
23:34devoted
23:35his
23:35life
23:36to
23:36taking
23:36care
23:37of
23:37his
23:37dad
23:37now
23:38almost
23:39everything
23:40he
23:40does
23:40revolves
23:41around
23:42trying
23:43to make
23:43his
23:44dad's
23:44life
23:45better
23:47and
23:48fulfilled
23:48what was
23:54the most
23:54exciting
23:55thing
23:55about
23:55being
23:56in the
23:56navy
23:56everything
23:59was
24:00exciting
24:00we were
24:02sent out
24:03towards
24:03Russia
24:04and then
24:06we surfaced
24:07right in the
24:07middle of
24:08their
24:08their port
24:09to let
24:11them know
24:11that we
24:12were there
24:12and they
24:13chased us
24:14for
24:14I forget
24:16how many
24:16days
24:16but
24:17they never
24:18did catch
24:18us
24:19wow
24:20that was
24:25the navy
24:26for a long
24:26time
24:27the home
24:29base was
24:30Hawaii
24:31we went
24:32to Japan
24:33and
24:34Vietnam
24:35and
24:37I just
24:38remember
24:38going down
24:39to the
24:40south pole
24:40it was
24:42cold
24:43I mean
24:44cold
24:45it was
24:48a good
24:49time
24:49in my
24:49life
24:50Sue is
25:11at the
25:11point now
25:11where she
25:12really can't
25:12be left
25:13alone
25:13and I
25:15have
25:15friends
25:16that will
25:16step up
25:16to help
25:17but
25:18it's
25:19not
25:19sustainable
25:20trying to
25:23figure out
25:23financially
25:24how to
25:24make it
25:25work
25:25is a
25:26huge
25:26portion
25:27of
25:27what
25:28we're
25:28living
25:28through
25:29hi guys
25:30call me
25:30if you
25:30need me
25:31okay
25:31all right
25:43so here
25:44we are
25:44at the
25:45main
25:45branch
25:45of the
25:46New York
25:46City
25:46Public
25:46Library
25:47so the
25:48library
25:49itself
25:49this
25:50building
25:50was
25:50finished
25:51in
25:511911
25:52I am
25:54a
25:55theater
25:55director
25:55and
25:56I'm
25:57a
25:57licensed
25:57New York
25:57City
25:58tour
25:58guide
25:58Sue
26:00was
26:00a
26:01restaurant
26:01manager
26:02these are
26:03not jobs
26:04with pensions
26:05that's a
26:07statue of
26:07Cornelius
26:08Vanderbilt
26:08who built
26:09Grand Central
26:10paying a
26:12caregiver
26:12to care
26:14for Sue
26:14would cost
26:15upwards
26:16of
26:17$100,000
26:18for a
26:19year
26:19I don't
26:22have those
26:22financial
26:22resources
26:23for that
26:24I just
26:25simply
26:25don't
26:27I'm
26:32working
26:32on
26:33getting
26:33into
26:34a
26:34state
26:34run
26:35program
26:35that
26:36would
26:36pay
26:37caregivers
26:37to
26:38come
26:39in
26:39to
26:39help
26:39take
26:40care
26:40of
26:40Sue
26:41but
26:42getting
26:43into
26:43the
26:43state
26:44program
26:44is
26:45an
26:45uphill
26:45battle
26:46there's
26:47a
26:48million
26:48hoops
26:48you
26:48have
26:48to
26:49go
26:49through
26:49the
26:53ultimate
26:54goal
26:54in
26:54all
26:54of
26:54this
26:55is
26:55to
26:56keep
26:56Sue
26:56out
26:57of
26:57a
26:57nursing
26:58home
26:58assistant
27:05would
27:06you
27:06please
27:07sit
27:07right
27:07here
27:08thank
27:09you
27:10so
27:10much
27:11thank
27:12you
27:12I
27:13wanted
27:13you
27:14to
27:14help
27:14me
27:14pick
27:14out
27:14my
27:14first
27:15day
27:15and
27:15work
27:15outfit
27:16so
27:17this
27:18is
27:18one
27:18option
27:19yeah
27:19I
27:21have
27:21this
27:21colorful
27:21dress
27:22it's
27:24not
27:24something
27:24that
27:24I
27:25would
27:25wear
27:25though
27:25yeah
27:26okay
27:26I
27:28accepted
27:29an
27:29offer
27:29for
27:30a
27:30new
27:30position
27:30that
27:31will
27:31allow
27:32me
27:32to
27:32work
27:33from
27:33home
27:33more
27:33often
27:34and
27:35that
27:36is
27:36exactly
27:37what
27:37I
27:37was
27:38hoping
27:38for
27:39I
27:39think
27:39we've
27:40got
27:40the
27:40outfit
27:41the
27:43plan
27:44is
27:44to
27:45move
27:45me
27:45and
27:45my
27:46mom
27:46to
27:46Grand
27:46Rapids
27:47and
27:48get
27:48a
27:48three
27:49bedroom
27:49apartment
27:49where
27:50me
27:51my
27:51mom
27:51and
27:52my
27:52aunt
27:52can
27:53live
27:53together
27:53yeah
27:55I
27:55like
27:55that
27:55so
28:07I
28:07had
28:08spoken
28:08to
28:09Trina
28:09I
28:10told
28:10her
28:11that
28:11we'll
28:11be
28:11moving
28:12and
28:13she's
28:14really
28:14excited
28:15about
28:15you
28:15being
28:16close
28:16again
28:16yeah
28:18we
28:18got
28:19together
28:19out
28:20in
28:20the
28:20water
28:20yeah
28:21went
28:21to
28:21the
28:21beach
28:22went
28:23to
28:23the
28:23beach
28:23and
28:24then
28:24her
28:24and
28:25Bob
28:25took
28:26us
28:26out
28:26on
28:26their
28:26boat
28:27yeah
28:28we
28:28had
28:29a
28:29good
28:29time
28:29there
28:30and
28:31let's
28:32see
28:32was
28:32Andrea
28:33there
28:33too
28:34no
28:35I
28:35don't
28:35think
28:35she
28:35was
28:35yeah
28:36I
28:36was
28:37there
28:37I
28:39was
28:40there
28:40my
28:40Andrea
28:41but
28:45she
28:45had
28:45to
28:45work
28:46that
28:46so
28:46yeah
28:47hey
29:00caregivers
29:00today
29:02my
29:02mom
29:03disassociated
29:04me as
29:04her
29:05daughter
29:05I
29:06know
29:06that
29:06that's
29:07just
29:07a
29:07part
29:07of
29:08the
29:09Alzheimer's
29:10journey
29:10but
29:11I
29:12am
29:12struggling
29:13and
29:14I'm
29:14just
29:14wondering
29:14if
29:15there
29:16is
29:16anyone
29:16else
29:16out
29:17there
29:18that
29:18is
29:19struggling
29:20too
29:40I
29:47know
29:47that
29:47she
29:47loves
29:48me
29:48but
29:51I
29:51also
29:51want
29:51that
29:52identity
29:52I
29:54don't
29:54know
29:54who
29:54I
29:54am
29:54without
29:55being
29:55like
29:56her
29:56daughter
29:57to
29:57her
29:57you
29:58know
29:58type
29:58of
29:58thing
29:59that
30:16art
30:16piece
30:16right
30:16there
30:17well
30:18that's
30:18my
30:19what
30:19the
30:19photograph
30:20of
30:20my
30:21son
30:22Cesario
30:22it's
30:25just
30:25you
30:25know
30:25the
30:26ink pen
30:26you
30:27just
30:27do
30:27little
30:27dots
30:28this
30:30cost
30:30me
30:31maybe
30:31three
30:32to
30:32five
30:34thousand
30:34of
30:34them
30:35that I
30:35made
30:36I
30:39have
30:39two
30:39sons
30:40Carlos
30:41and
30:42then
30:42I
30:42have
30:42another
30:43son
30:43Cesario
30:44and
30:45he
30:45lives
30:46out
30:46in
30:46the
30:46trailer
30:46outside
30:47but
30:48I
30:48haven't
30:48seen
30:49him
30:49for
30:49a
30:49while
30:49so
30:49I
30:50don't
30:50know
30:50why
30:50he's
30:50that
30:50my
30:55brother's
30:55dream
30:56was to
30:56become
30:56a
30:57crew
30:57chief
30:57with
30:58NASCAR
30:58he
31:01moved
31:01back
31:02from
31:02North
31:02Carolina
31:03to
31:03take
31:03care
31:04of
31:04dad
31:04with
31:04me
31:05he
31:07had
31:07a
31:07hard
31:07time
31:08with
31:09caring
31:09for
31:09my
31:10dad
31:10seeing
31:11the
31:11deterioration
31:12my
31:14brother
31:14struggled
31:15with
31:15alcoholism
31:16about
31:21one
31:22year
31:22ago
31:22I
31:23hadn't
31:23seen
31:23my
31:24brother
31:24for
31:24a
31:25couple
31:25days
31:25I
31:26banged
31:27on
31:27the
31:27trailer
31:28door
31:28eventually
31:30the
31:30fire
31:30department
31:31pry
31:31the
31:32door
31:32open
31:32and
31:32we
31:34discovered
31:34my
31:34brother
31:35had
31:36passed
31:36away
31:36dad
31:44asked
31:44me
31:45where
31:45society
31:46was
31:46I
31:47grabbed
31:47his
31:48hand
31:48and I
31:48said
31:49he's
31:50gone
31:50he's
31:52dead
31:52and dad
31:54shook his
31:55head
31:55he broke
31:57down
31:57I
31:59saw
31:59life
32:00get
32:00sucked
32:01out
32:01of
32:01him
32:02dad
32:06came
32:06to
32:06the
32:06memorial
32:07saw
32:08the
32:08pictures
32:08but
32:10didn't
32:10seem
32:10to
32:11take
32:11root
32:12in
32:12his
32:13memory
32:13about
32:15a week
32:15later
32:16or so
32:16he
32:17asks
32:17have you
32:18talked
32:18to
32:18your
32:18brother
32:19I
32:22don't
32:22tell
32:22my
32:22dad
32:23that
32:23my
32:23brother
32:24has
32:24passed
32:25anymore
32:25to
32:26reduce
32:27the
32:27traumatic
32:28emotional
32:29effects
32:29now
32:32when my
32:33dad
32:34asks
32:35about
32:35my
32:35brother
32:36I'll
32:37say
32:37he's
32:38in
32:38North
32:39Carolina
32:39he's
32:42with his
32:42NASCAR
32:42buddies
32:43and
32:44everything's
32:45fine
32:45here
33:04you
33:04go
33:05let me
33:07put it
33:07on this
33:07one
33:08or the
33:08one
33:08right
33:08behind
33:08you
33:09okay
33:10so
33:14mom
33:15I was
33:15thinking
33:16we
33:17could
33:17go
33:18to
33:18the
33:18park
33:18do
33:20not
33:20like
33:21to
33:21get
33:21out
33:21there
33:22because
33:22I
33:23end
33:23up
33:23getting
33:23sick
33:24whatever
33:24okay
33:25my
33:29mom
33:29and I
33:29moved
33:30to
33:30Grand Rapids
33:31nine
33:31months
33:32ago
33:32and
33:33then
33:34my
33:34aunt
33:35is
33:35living
33:36with
33:36us
33:36as
33:37well
33:37are
33:38you
33:38ready
33:38are
33:40you
33:41ready
33:41I'm
33:41getting
33:42my
33:42coffee
33:42I
33:45watch
33:46Christy
33:46two
33:46or
33:47three
33:47days
33:47a
33:47week
33:47while
33:48my
33:48niece
33:48Sandra
33:49is
33:49at
33:49work
33:49it's
33:51been
33:51a
33:52challenge
33:52for
33:52me
33:53there
33:53are
33:54times
33:54when
33:54my
33:55sister
33:55thinks
33:56that
33:56I
33:56don't
33:56belong
33:56here
33:57that
33:57I
33:57don't
33:57live
33:57here
33:58and
33:59then
33:59she
33:59wants
34:00me
34:00to
34:00go
34:00and
34:01she
34:02gets
34:02very
34:03agitated
34:04moving
34:07has
34:07been
34:07very
34:08disorienting
34:09for my
34:09mother
34:09getting
34:11used
34:11to
34:11her
34:11room
34:12to
34:13just
34:14the
34:14unfamiliar
34:15places
34:16she
34:17feels
34:18unsure
34:18and
34:18unsafe
34:19I
34:20am
34:20going
34:21home
34:21oh
34:22you're
34:22going
34:22home
34:22yeah
34:23oh
34:23okay
34:24I've
34:26been
34:26feeling
34:27a lot
34:27of
34:27guilt
34:28because
34:29I
34:30moved
34:31to
34:31make
34:32things
34:32better
34:32for
34:33us
34:33but
34:35the
34:35move
34:36made
34:36things
34:37worse
34:37there
34:45have
34:46been
34:46challenges
34:46to
34:47working
34:47from
34:47home
34:48that
34:48I
34:48did
34:48not
34:49anticipate
34:50even
34:52if
34:52I'm
34:52home
34:53I
34:53still
34:53have
34:54meetings
34:54all
34:54day
34:54and
34:55so
34:55I
34:56can't
34:57necessarily
34:57give
34:58my
34:58mother
34:58the
34:58attention
34:59that
34:59I
35:00would
35:00like
35:00to
35:01even
35:04if
35:04technically
35:05my
35:05aunt's
35:05with
35:05her
35:06it's
35:06like
35:06I
35:07am
35:07still
35:07on
35:08because
35:08if
35:09there's
35:10some
35:10kind
35:10of
35:11disagreement
35:11at
35:12the
35:12end
35:12of
35:13the
35:13day
35:13I'm
35:14the
35:14one
35:14that
35:15she
35:15trusts
35:16the
35:16most
35:17it's
35:18just
35:18crazy
35:20you're
35:20like
35:20on
35:20high
35:20alert
35:21all
35:21the
35:21time
35:21all
35:22the
35:22time
35:22Sue
35:30Darrow
35:30yeah
35:32so
35:39how
35:39are
35:39things
35:39going
35:40good
35:43they're
35:44okay
35:45well
35:46they're
35:47not
35:47they're
35:47not
35:48you
35:48know
35:48spectacular
35:50no
35:50it's
35:50not
35:50spectacular
35:51it's
35:52good
35:52it's
35:52good
35:53many
35:54patients
35:55who have
35:55Alzheimer's
35:56disease
35:56are not
35:57aware of
35:57the fact
35:57that they're
35:58experiencing
35:58memory
35:59problems
35:59so I
36:01try and
36:01do the
36:01appointment
36:02with everyone
36:02together
36:03the most
36:04important
36:04thing
36:05is
36:05allowing
36:06both
36:07people
36:07to speak
36:08so we
36:09can figure
36:09out what
36:09the actual
36:10issues are
36:10and what
36:11we can
36:11do about
36:11it
36:11what's
36:13different
36:13what's
36:14different
36:15is
36:15the words
36:16and about
36:17being able
36:17to
36:18pick
36:19words
36:19out
36:20sometimes
36:21when you
36:21look
36:22to see
36:22something
36:23you
36:23can't
36:24you
36:24the
36:25name
36:25of
36:25what
36:26it
36:26is
36:26escapes
36:26you
36:27oh
36:27oh
36:27you're
36:28you're
36:28talking
36:29about
36:29you
36:29now
36:30you're
36:30talking
36:31about
36:31me
36:31yes
36:32oh
36:33okay
36:33how are
36:35things in
36:35terms of
36:35your mood
36:36I'm
36:36good
36:37what do
36:38you think
36:39sometimes
36:39she's
36:40angry
36:41okay
36:41angry
36:42yes
36:43because
36:44somebody
36:45me
36:45because
36:46I know
36:46it
36:46and tell
36:47her
36:47or she
36:47get
36:47you
36:47know
36:48how
36:49often
36:49is
36:49that
36:49happening
36:50uh
36:51it's
36:52not
36:53is
36:56it
36:56like
36:56she
36:57gets
36:57mad
36:57and
36:57then
36:57she
36:57walks
36:57away
36:58and
36:58then
36:58calms
36:58down
36:58she
36:59walks
36:59away
36:59and
36:59then
36:59goes
37:00out
37:00have
37:01you
37:01gotten
37:01lost
37:02recently
37:02uh
37:03no
37:03yes
37:07when
37:09you
37:09finally
37:09answered
37:10the
37:10phone
37:10you
37:11weren't
37:11sure
37:11where
37:12you
37:12were
37:12or
37:12how
37:12to
37:12get
37:13home
37:13really
37:13that
37:14or
37:14where
37:15you
37:15were
37:15and
37:16so
37:16I
37:16had
37:16to
37:16walk
37:16you
37:17it's
37:18okay
37:18it's
37:18okay
37:19it's
37:19okay
37:19I'm
37:20gone
37:20I'm
37:22gone
37:22this
37:23is
37:23exactly
37:27what
37:27it
37:27okay
37:28there
37:29you
37:29go
37:29will
37:30you
37:30continue
37:30this
37:30appointment
37:31with
37:31me
37:31Sue
37:31no
37:32why
37:33not
37:33because
37:34it's
37:34it's
37:35well
37:38no
37:39you
37:40want to
37:41sit
37:41for a
37:41minute
37:41and
37:41talk
37:42about
37:42it
37:42no
37:42no
37:44no
37:45no
37:45no
37:45no
37:46well
37:47at the
37:47very least
37:48I need
37:48to figure
37:48out if we
37:48need to
37:49do
37:49anything like
37:49refill
37:50medication
37:50so why
37:51don't we
37:51at least
37:51have that
37:51I don't
37:52I don't
37:52you don't
37:53you don't
37:53medications
37:54that I
37:55I know
37:56but
37:56I do
37:57prescribe
37:57some so
37:58let me
37:58go and
37:58figure that
37:59out
37:59okay
37:59okay
38:00you want
38:01to come
38:01with me
38:01or no
38:01no
38:02okay
38:02but I'm
38:03going to
38:03take
38:03Janice
38:03with me
38:03okay
38:04you don't
38:04leave
38:05though
38:05okay
38:05stay
38:05here
38:05okay
38:06they're
38:10got her
38:10right
38:11they're
38:11watching
38:11yes
38:12Anna
38:12is
38:12with
38:13her
38:13thank
38:13you
38:14can
38:15you
38:15predict
38:16what
38:16the
38:16triggers
38:16are
38:16going
38:16to
38:16be
38:17sometimes
38:18yes
38:19it's
38:19telling
38:19her
38:19something
38:20she
38:20doesn't
38:20want
38:21to
38:21hear
38:21she
38:22gets
38:22like
38:23it's
38:23embarrassing
38:23and I
38:24understand
38:25the
38:25anger
38:25I
38:25get
38:26it
38:27you
38:32may
38:33need
38:33to
38:34get
38:34involved
38:35with
38:35the
38:35Sue
38:35situation
38:36she
38:36wants
38:36to
38:36go
38:37home
38:37I
38:50see
38:50that's
38:50a red
38:50light
38:51yeah
38:52car's
38:53coming
38:53let's
38:57wait
38:58let's
38:58wait
38:58let's
38:58wait
38:58let's
38:58wait
38:59Sue
39:00let's
39:01wait
39:01this one
39:08up here
39:09that was
39:10me
39:11and
39:11my
39:12sons
39:13Carlos
39:15and then
39:16Cesario
39:17lives up
39:20in the
39:20mountains
39:20now
39:21this
39:25role
39:25as a
39:26caregiver
39:26is
39:27an
39:27emotional
39:28rollercoaster
39:29ride
39:29I had
39:31to learn
39:31how to
39:31adapt
39:32with the
39:32isolation
39:33of not
39:33being able
39:34to share
39:34my grief
39:35with my
39:36dad
39:37mom
39:42I know
39:45that it's
39:45been tough
39:46lately
39:46it's okay
39:48because it'll
39:49be done
39:50soon
39:50it's gonna
39:51come
39:52whether I like
39:53it
39:53it's not
39:55gonna be
39:55done
39:55soon
39:56okay
39:56you've got
39:57a lot
39:58of life
39:59to live
39:59yet
39:59and I
40:00don't mind
40:01going
40:02going
40:03early
40:03I'm
40:12trying to
40:12get there
40:12I got
40:13I'm in
40:13a cab
40:15I need
40:15to be
40:15143rd
40:16we just
40:17gotta keep
40:17going
40:17down
40:17Broadway
40:18please
40:19sir
40:19she's
40:26139
40:27now
40:27almost
40:28at
40:28138th
40:29street
40:29so let's
40:30go
40:31please
40:31I wish
40:47I could
40:47have
40:47helped
40:47my
40:48brother
40:48good night
40:51okay
40:51I love
40:52you
40:53I'll see
40:55you in the
40:55morning
40:55alrighty
40:56the thought
40:57of not
40:58doing enough
40:59for my
40:59dad
40:59weighs heavy
41:00on me
41:01and get
41:07your toothbrush
41:07and toothpaste
41:08brush your
41:08teeth before
41:09we start
41:10today
41:10is that
41:11okay
41:11if I get
41:13your toothbrush
41:14and toothpaste
41:14for you
41:15is that
41:16alright with
41:17you
41:17do you
41:21want to
41:21brush your
41:21teeth in
41:22this bathroom
41:22or am I
41:23I know
41:23we're gonna
41:24do it
41:24okay
41:24I'm just
41:25I'm just
41:26asking
41:26because I'll
41:27bring your
41:27toothbrush
41:28and toothpaste
41:28to you
41:29um that
41:30soap for
41:31your hands
41:32here let
41:32me just
41:32put this
41:33on your
41:33toothbrush
41:34I need
41:35to do
41:35okay
41:36okay here
41:37you go
41:37there's the
41:39toothpaste
41:39I feel like
41:42Alzheimer's
41:43has just
41:44turned us
41:46into enemies
41:48there was so
41:50much love
41:51between us
41:51and I just
41:52thought that
41:53that love
41:53would be like
41:54this tether
41:54that would
41:55help us
41:55always find
41:56our way
41:56back to
41:57each other
41:57and I feel
41:58that tether
41:59just like
42:00disintegrating
42:01keep going
42:07keep going
42:08please
42:10keep going
42:13keep going
42:13there they
42:14are
42:14you think
42:16you're on
42:17one trajectory
42:18in your life
42:18and it makes
42:20a left hand
42:20turn
42:21so you have
42:22to adjust
42:23and adapt
42:23all the time
42:24and you also
42:32know
42:33that it's
42:34never going
42:34to get better
42:35there's my
42:49little baby
42:50is that your
42:54baby
42:54submarine
42:55right there
42:56yeah
42:56it's not the
42:57wind I was
42:58on but
42:58I wouldn't
42:59like it
42:59you got it
43:01pop
43:02yeah
43:03would you
43:07sit in
43:08here
43:08mm-hmm
43:09you sit
43:10here and
43:11play cards
43:13or whatever
43:14did you
43:16work in
43:16here
43:16yeah
43:17everybody
43:19on a
43:19submarine
43:19works in
43:21every position
43:23at one
43:23time
43:24so you'd
43:26have to
43:26learn
43:26everything
43:27about
43:27what
43:28these
43:28you have
43:29to
43:30yeah
43:30somebody
43:31gets killed
43:32that is in
43:33one area
43:34you have to
43:35go do that
43:36job in his
43:36area
43:37how did you
43:40flush the toilet
43:41it doesn't look
43:42like there's a lever
43:43big farts
43:46my approach
43:52right now
43:52is to create
43:53a space for him
43:54to be confident
43:55and comfortable
43:56becoming someone
43:58he can lean on
44:00when he needs it
44:01spend a long time
44:06spend a long time
44:06in the early stages
44:30of my dad's
44:31dementia
44:32I didn't know
44:33what a caregiver
44:34was
44:34I didn't know
44:35what Alzheimer's
44:37was
44:37so thank you
44:39again for
44:39agreeing to
44:40meet with us
44:41SB639
44:43would create
44:45Alzheimer's
44:45diagnostic hubs
44:47to train
44:47providers
44:49and expand
44:50access to
44:51early detection
44:51and diagnosis
44:52I started advocating
44:55with the
44:55Alzheimer's
44:55association
44:56I'm going to
44:57talk about
44:58SB639
45:00which would
45:01create
45:01Alzheimer's
45:02diagnostic hubs
45:04SB639
45:07I feel
45:09a sense
45:10of purpose
45:11to give
45:12back
45:12to
45:14other
45:14caregivers
45:15say
45:16end all
45:17end all
45:19oh
45:31delivery
45:32delivery
45:33delivery
45:34but you have
45:35to get up
45:36to get it
45:36I'll put it
45:37over here
45:37for you
45:37while you get
45:38dressed
45:38okay
45:39okay
45:39it's been
45:44very difficult
45:45to find
45:45a caregiver
45:46who is
45:47right
45:48for taking
45:49care
45:50of Sue
45:50it's not
45:52just anybody
45:53that can
45:53walk in
45:54and deal
45:56with her
45:56anger
45:56I sent out
46:03300 emails
46:04to folks
46:05I know
46:05I'm just
46:06going to
46:06put more
46:07flowers
46:07on Janice's
46:08hat
46:08yes
46:09make my
46:09hat
46:09very
46:10pretty
46:10and
46:11I finally
46:12got in
46:12touch
46:12with Joe
46:13he's
46:14amazing
46:15he's
46:15very
46:16good
46:16with Sue
46:16look at
46:18that
46:18beautiful
46:19beautiful
46:22we got
46:25into the
46:26CD
46:26PAPA
46:27program
46:27which is
46:28run by
46:28the state
46:29which helps
46:30pay
46:30for Sue's
46:32care
46:33act like
46:36you're
46:36having a
46:38good time
46:38I am
46:39it allows
46:44me to
46:45breathe a
46:46bit
46:46and not
46:47worry about
46:48Sue
46:48all the
46:49time
46:49and that's
46:51an amazing
46:51gift
46:52it also
46:55allowed me
46:56to be able
46:58to pick up
46:58work
46:59directing a
47:00play
47:00Sydney's at
47:02the hospital
47:02for observation
47:03does she know
47:04what's happening
47:05hard to tell
47:06she's been
47:07crying all day
47:07but not
47:08speaking
47:08the play
47:10deals with
47:11dementia
47:11and the
47:12downhill
47:13slide
47:14of that
47:15and it's
47:16a comedy
47:17Jesus look
47:19around you
47:19we're surrounded
47:21by suffering
47:22in this place
47:22okay good
47:28let's stop
47:29good
47:29look if you
47:31can't laugh
47:32perfect
47:35you know
47:36what
47:36as they
47:37try to
47:37wait wait
47:38and if
47:38they try to
47:39if you
47:39try to
47:39sneak away
47:40and he's
47:40here
47:41you can
47:44stop him
47:44right here
47:52I've become
47:57a lot more
47:58active on
47:58social media
47:59it's been
48:01pivotal to
48:01my mental
48:02health
48:03truly
48:03I have
48:08been
48:08connecting
48:09with other
48:10caregivers
48:10exchanging
48:13stories
48:14exchanging
48:15remedies
48:16exchanging
48:18fears
48:18I went
48:22from
48:23having
48:23a handful
48:24of direct
48:24messages
48:25to
48:25having
48:26upwards
48:26of
48:26100
48:27direct
48:27messages
48:28a day
48:29I just
48:33want you
48:33to know
48:33that this
48:34is a place
48:34that you
48:34can be
48:35able to
48:35come to
48:35because
48:36this is
48:37tough
48:37it is
48:38tough
48:39we need
48:40each other
48:41oh my
48:45I love
48:47this picture
48:47oh that
48:48was another
48:49nice one
48:49yeah
48:50this is
48:51one
48:51yeah
48:51my biggest
48:56hope is
48:57just that we
48:59find each
48:59other again
49:00I know
49:02it'll be
49:02different but
49:03I'm really
49:03hoping that
49:04we can just
49:04feel connected
49:05with one
49:06another
49:07I love
49:12you
49:12Lord
49:14and I
49:17lift
49:18my
49:19voice
49:22to
49:23worship
49:25you
49:28oh my
49:30soul
49:32rejoice
49:34rejoice
49:35take
49:37joy
49:38like
49:39king
49:42in
49:43what
49:46you
49:47hear
49:48let it be
49:52a sweet
49:54sweet
49:55sound
49:56let it be
49:57let it
49:59be a
50:00sweet
50:01sweet
50:02sound
50:05in
50:07your
50:07ear
50:10oh
50:17fastball
50:18I am
50:24starting to
50:25make a
50:26little bit
50:26more peace
50:27with the
50:28hard parts
50:29of this
50:29okay
50:31I'm learning
50:33to live in
50:34the present
50:34with her
50:35we've had a
50:38small family
50:39of very
50:40resilient
50:40women
50:41lots of
50:43resilient
50:43headstrong
50:45yeah
50:45we don't
50:46like to
50:47just say
50:47oh no
50:48we can't
50:48do it
50:49we hold
50:50on
50:50yes we
50:51do
50:51there's a lot
51:02of stuff
51:03that has
51:03changed
51:04in our
51:04lives
51:05and we've
51:05adapted
51:06to it
51:07and that's
51:08not to say
51:08it's been
51:08easy
51:09but it's
51:10it's what
51:11it is
51:11and so
51:12so yeah
51:14anyway
51:15we're still
51:16good
51:17right
51:17always
51:19that's the
51:19right answer
51:20can you
51:29tell me
51:30your
51:31lifelong
51:31goal
51:32it's already
51:35done
51:35having
51:37two sons
51:38there
51:44my
51:47job
51:47is
51:48done
51:48if you
51:56asked me
51:57if I would
51:58do this
51:58over again
51:59I'd say
51:59yes
52:00I'd go
52:01through all
52:01this pain
52:02for my
52:04dad
52:04and
52:10I'd say
52:10I'd go
52:11to the
52:16one
52:16and
52:20and
52:24and
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