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- #cineva
Independent Lens Season 26 Episode 17
#Cineva USA
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#Cineva USA
https://www.dailymotion.com/Cineva
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FunTranscript
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.
01:30I don't know.
01:41I don't know.
01:42I don't know.
01:43Ma, catch.
02:04Whoa.
02:07He just got that one.
02:08You have to slow down a little bit because I just don't want to.
02:17Okay.
02:20I 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.
02:35I decided to move my mom in with me.
02:39Wow.
02:40Wow.
02:41Look at that.
02:44That is a cute look.
02:47She'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.
03:02There you go.
03:04Whoa.
03:05Here you go.
03:07Hmm.
03:14I'm a property manager.
03:17All right.
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.
03:29It's killing me every morning to leave her.
03:32Are you enjoying the weather?
03:51Yeah.
03:52It doesn't matter what the weather is.
03:53I always enjoy it.
03:55Yeah?
03:55That's good.
03:58Even when I was in the Navy, out in the middle of the ocean, and the waves were going over
04:04you, we had weather gear on, but you're wet.
04:08Yeah?
04:09Yeah.
04:09Ha, ha, ha, ha, ha, ha, ha, ha.
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?
04:16Ha, ha, ha, ha, ha, ha, ha, ha, ha.
04:18Ha, ha, ha, ha, ha, ha, ha, ha, ha.
04:19Just clean this way, keep all the little hairs off you.
04:23Voila.
04:25You look just like your dad.
04:35I was an illustrator dressman in the Navy.
04:40Then I worked at Sac State University in media services.
04:44And then I went on doing art and this and that.
04:52This is wood on the outside, but this is metal.
05:01It's all plywood, which you really can't tell.
05:06But the plywood is not flat this way, it's plywood this way.
05:10And then I got these old masks that I made of my face.
05:17And I cut them in half and painted them and put them into there.
05:22It's just fooling around, you know.
05:35Leave my hair on, okay?
05:37I wasn't planning on it.
05:38Me and my dad had always had a close relationship.
05:47He was a man's man, an artist.
05:50Strong work ethic.
05:53He's my hero.
05:58Massage your legs.
06:00Lay back.
06:02Yeah, he's a bossy.
06:03I left my career in the defense industry and moved back home to be my dad's caregiver.
06:16And he didn't like it.
06:20I was encroaching on his independence.
06:24He would say I was belittling him.
06:32Yeah, it's good to have somebody around to help you.
06:37Since I don't have a wife right now, he's like a wife.
06:41Where's your napkin?
06:47My dad is not really aware that there may be something wrong with him.
06:53That he's dependent upon someone being there.
06:55So this goes off to the right side.
07:06You have it?
07:07Mm-hmm.
07:07Okay.
07:08Okay, wait.
07:17Before you come down, take the string on to the right, the string that's to the right.
07:21Da-da-da-da-da-da-da-da-da-da-da-da-da-da-da.
07:35This is our photograph.
07:40This is me, or wasn't me.
07:42It still is.
07:43and this is janice this is um
07:50olives i mean not olives what are they anyway it is um it's a very wide
08:03sue and i've 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 good 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 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
09:04here 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
10:08in 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
10:42hi
10:49you okay
10:53sound exhausted
10:55yeah i am a little bit i um
10:58yeah i'm just having a
11:01bad 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
11:10wanted 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
11:30yeah
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 and she's like yeah i want that too
11:49she told me i'm gonna be praying that god brings you a job like that
11:56oh
11:57nice
11:58get 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
12:28hmm
12:29no
12:31i'm just damn good
12:34come on pop
12:42we have 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
13:45something 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
14:00like 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
14:21what time
14:2210 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
14:37hippocampus
14:38in alzheimer's we find that these two will start shrinking
14:42and so just from looking at this we would expect that you'd be having trouble forming new memories
14:48so you can see that you have quite a bit of space here
15:07i see a lion there
15:15wow
15:32oh he's great holy hannah
15:34i first met janice
15:40when
15:41she was
15:44at the beach
15:46at the well 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
16:10oh 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 in 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 and and people like went crazy over this outfit
16:48all eyes went
16:49onto you from this
16:51this was a great night
16:52i could always think
16:59all the people looking at me going
17:00what's she doing with her
17:01and i'd be like
17:03uh-huh
17:03eat 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 at you
17:18i 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
18:14sue
18:20sue
18:20sometimes she gets very impatient
18:22and gets mad at me
18:24sometimes she takes off outside
18:28and then she's off on a tear
18:30and there's no stopping her
18:32i have an apple watch
18:38on her wrist
18:39that we can track
18:40her iphone
18:45hopefully put in her pocket
18:47you have reached
18:50shoot and narrow
18:51you have reached
19:10shoot and narrow
19:11i'm looking for your purse
19:18so we can get your toothbrush
19:20do you know where your purse is mom
19:23not under the mattress
19:29found it
19:33it's wrapped up in your
19:34wrapped up in your shirt
19:36that's good
19:38okie doke
19:41yeah
19:42oh
19:43and i have to
19:46we live in
19:51a small
19:52northern
19:53lakeshore town
19:54here in michigan
19:55there's
19:57very little
19:58resources
19:58for caregivers
19:59i don't have
20:02anyone
20:03locally
20:03that
20:04can help
20:05support
20:05i feel like
20:08on an island
20:09on our own
20:10so i started
20:14sharing on instagram
20:15there are a lot of things
20:18that i'm learning
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
20:53all right
20:54i've got a towel
20:55for you
20:56i will leave you
20:59to it
21:00i have
21:03definitely thought
21:04about moving
21:05maybe to
21:06grand rapids
21:07grand rapids
21:12grand rapids
21:12is much bigger
21:13than
21:14weddington
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 order
21:29to move
21:29i have to
21:31find a job
21:32where i can
21:32work from home
21:33hi
21:44how are you
21:47ah
21:47better now
21:49that's good for now
21:54okay
21:54i met carlos
21:59many years
22:00ago
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
22:55longer
22:56that person
22:57did you guys
22:59go for 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 mom
23:11both of us
23:13are kind
23:14of stuck
23:15in our
23:16situations
23:17but i
23:19still consider
23:20him my
23:20sweetheart
23:21your hangar
23:26fell again
23:26i'll have
23:28to come
23:28back and
23:28fix it
23:29like you
23:30don't have
23:30anything else
23:31to do
23:32his son
23:34has devoted
23:35his life
23:36to taking
23:36care of
23:37his dad
23:37now
23:38almost
23:39everything
23:40he does
23:40revolves
23:41around
23:42trying to
23:43make his
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 exciting
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 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
24:18never
24:18did
24:18catch
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 vietnam
24:35and i just
24:38remember
24:38going down
24:39to the south
24:40pole
24:40it was
24:42cold
24:43i mean
24:44cold
24:45that was
24:48a good
24:49time
24:49in my
24:49life
24:50sue is at
25:11the point
25:11now where
25:12she really
25:12can't be
25:13left alone
25:13and i have
25:15friends that
25:16will step
25:16up to
25:17help
25:17but it's
25:19not sustainable
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 what
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 branch
25:45of the
25:46new york
25:46city public
25:46library
25:47so the
25:48library
25:49itself
25:49this building
25:50was finished
25:51in 1911
25:52i am a
25:55theater director
25:55and i'm a
25:57licensed new
25:57york city
25:58tour guide
25:58sue was
26:00a restaurant
26:01manager
26:02these are not
26:04jobs with
26:04pensions
26:05that's a
26:07statue of
26:07cornelius
26:08vanderbealt
26:08who built
26:09grand central
26:10paying a
26:12caregiver
26:12to care for
26:14sue would
26:15cost upwards
26:16of hundred
26:17thousand dollars
26:18for a year
26:19i don't have
26:22those financial
26:22resources for
26:24that i just
26:25simply don't
26:26i'm working
26:32on getting
26:33into a
26:34state-run
26:35program
26:35that would
26:36pay caregivers
26:37to come
26:39in to help
26:39take care
26:40of sue
26:41but getting
26:43into the
26:43state program
26:44is an
26:45uphill battle
26:46there's a
26:48million hoops
26:48you have to
26:49go through
26:49the ultimate
26:54goal in all
26:54of this
26:55is to
26:56keep sue
26:56out of
26:57a nursing
26:58home
26:58assistant
27:05would you
27:06please sit
27:07right here
27:08thank you
27:10so much
27:11thank you
27:12i wanted you
27:14to help me
27:14pick up my
27:14first day
27:15and work
27:15outfit
27:16so this
27:18is one
27:18option
27:19yeah
27:19i have this
27:21colorful dress
27:22it's not
27:24something that
27:24i would wear
27:25though
27:25yeah
27:26okay
27:26i accepted
27:29an offer
27:29for a new
27:30position
27:30that will
27:31allow me
27:32to work
27:33from home
27:33more often
27:34and that
27:36is exactly
27:37what i was
27:38hoping for
27:39i think we've
27:40got the
27:40outfit
27:41the plan
27:44is to
27:45move me
27:45and my
27:46mom to
27:46current
27:46rapids
27:47and get
27:48a three
27:49bedroom
27:49apartment
27:49where me
27:51my mom
27:51and my
27:52aunt can
27:53live together
27:53yeah i like
27:55that
27:56so i had
28:08spoken to
28:09trina
28:09i told her
28:11that we'll
28:11be moving
28:12and she's
28:14really excited
28:15about you
28:15being close
28:16again
28:16yeah we got
28:19together
28:19out in the
28:20water
28:20yeah i went
28:21to the beach
28:22went to the
28:23beach and then
28:24her and bob
28:25took us out
28:26on their
28:26boat
28:27yeah we
28:28we had a
28:29good time
28:29there
28:30and let's
28:32see was
28:32andrea there
28:33too no i
28:35don't think
28:35she was
28:35yeah i was
28:37there
28:37i was there
28:40my andrea
28:41but she had
28:45to work
28:46that so
28:46yeah
28:47hey caregivers
29:00today my
29:02mom
29:03disassociated
29:04me as her
29:05daughter
29:05i know that
29:06that's just a
29:07part of
29:08the alzheimer's
29:10journey
29:10but i am
29:12struggling
29:13and i'm
29:14just wondering
29:14if there's
29:16anyone else
29:16out there
29:18that is
29:19struggling too
29:20i know that
29:47she loves
29:48me
29:48but i also
29:51want that
29:51identity
29:52i don't know
29:54who i am
29:54without me
29:55being like
29:56her daughter
29:57to her
29:57you know
29:58type of
29:58thing
29:59that art piece
30:16right there
30:17well that's
30:18my
30:19what a
30:19photograph
30:20of
30:20my son
30:22cesario
30:22it's
30:25it's just
30:25you know
30:25the ink
30:26pen
30:26you just
30:27do the
30:27dots
30:28this
30:30cost me
30:31maybe
30:31three
30:32five thousand
30:34of them
30:35that i made
30:36i have
30:39two sons
30:40carlos
30:41and then i
30:42have another
30:43son
30:43cesario
30:44and he
30:45lives out
30:46in the
30:46trailer
30:46outside
30:47but i
30:48haven't seen
30:49him for a
30:49while
30:49so i
30:50don't know
30:50why he's
30:50that
30:54my brother's
30:55dream was
30:56to become
30:56a crew chief
30:57with nascar
30:58he moved
31:01back
31:02from north
31:02carolina
31:03to take
31:03care of
31:04dad
31:04with me
31:05he had
31:07a hard
31:07time
31:08with
31:09caring
31:09for my
31:10dad
31:10seeing
31:11the
31:11deterioration
31:12my brother
31:14struggled
31:15with
31:15alcoholism
31:16about one
31:22year ago
31:22i hadn't
31:23seen
31:23a brother
31:24for a
31:25couple
31:25days
31:25i had
31:26banged
31:27on
31:27the
31:27trailer
31:28door
31:28eventually
31:30the fire
31:30department
31:31pried the
31:32door open
31:32and we
31:34discovered
31:34my brother
31:35had passed
31:36away
31:36dad
31:44asked me
31:45where
31:45society
31:46was
31:46i grabbed
31:47his hand
31:48i said
31:49he's gone
31:50he's dead
31:52and dad
31:54shook his
31:55head
31:55he broke
31:57down
31:57i saw
31:59life get
32:00sucked out
32:01of him
32:01dad
32:06came to
32:06the memorial
32:07saw the
32:08pictures
32:08but
32:10didn't seem
32:10to
32:11take root
32:12in his
32:13memory
32:13about a
32:15week later
32:16or so
32:16he asks
32:17have you
32:18talked to
32:18your brother
32:19i don't
32:22tell my
32:22dad
32:23that my
32:23brother
32:24has passed
32:25anymore
32:25to reduce
32:27the traumatic
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 in
32:38north
32:39carolina
32:39he's with
32:42his
32:42nascar
32:42buddies
32:43and
32:44everything's
32:45fine
32:45here
33:02here you go
33:05just
33:05let me
33:07put it
33:07on this
33:07one or
33:08the one
33:08right
33:08behind
33:08just
33:09whatever
33:09okay
33:10so
33:14mom
33:15i was
33:15thinking
33:16we
33:17could
33:17go
33:18to the
33:18park
33:18do not
33:20like to
33:21get up
33:21there
33:22because
33:22i end
33:23up
33:23getting
33:23sick
33:24whatever
33:24okay
33:25my
33:29mom and
33:29i moved
33:30to
33:30grand
33:30rapids
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
33:41having
33:42my
33:42coffee
33:42i watch
33:46christy
33:46two or
33:47three days
33:47a week
33:47while my
33:48niece
33:48andra
33:49is at
33:49work
33:49it's
33:51been
33:51a
33:52challenge
33:52for me
33:53there are
33:54times
33:54when
33:54my
33:55sister
33:55thinks
33:56that i
33:56don't
33:56belong
33:56here
33:57that i
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 the
35:21time
35:21all
35:22the
35:22time
35:22sue
35:30darrow
35:30uh
35:31yeah
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
35:51but
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 try
36:01and do the
36:01appointment
36:02with everyone
36:02together
36:03the most
36:04important thing
36:05is allowing
36:06both people
36:07to speak
36:08so we can
36:09figure out
36:09what the actual
36:10issues are
36:10and what we
36:11can do
36:11about it
36:11what's
36:13different
36:13what's
36:14different
36:15is the
36:16words
36:16and about
36:17being able
36:17to
36:18pick words
36:19out
36:20sometimes
36:21when you
36:21look
36:22to
36:22see
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 you'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 good
36:37what do
36:38what do
36:38you think
36:39sometimes
36:39she's
36:40angry
36:41okay
36:41angry
36:42yes
36:43because
36:44angry
36:44because
36:44somebody
36:45me
36:45because
36:46i know
36:46i didn't
36:46tell her
36:47or she
36:47get
36:47you know
36:48how often
36:49is that
36:49happening
36:50uh
36:51it's not
36:53is it like
36:56she gets
36:57mad and then
36:57she walks
36:57away and
36:58then calms
36:58down
36:58she walks
36:59away and
36:59then goes
37:00out
37:00have you
37:01gotten
37:01lost
37:02recently
37:02uh
37:03no
37:03yes
37:07when you
37:09finally
37:09answered
37:10the phone
37:10you weren't
37:11sure
37:11where you
37:12were
37:12or how
37:12to get
37:13home
37:13really
37:13that
37:14or how
37:14where you
37:15were
37:15and so
37:16i had
37:16to walk
37:16you
37:17it's
37:18okay
37:18it's
37:18okay
37:19it's
37:19okay
37:19i'm gone
37:20this is
37:21i'm gone
37:22this is
37:23exactly
37:27what
37:27okay
37:28there you
37:29go
37:29will you
37:30continue
37:30this
37:30appointment
37:31with me
37:31sue
37:31no
37:32why not
37:33because
37:34it's
37:34it's
37:35why not
37:38no
37:39you want
37:40to sit
37:41for a minute
37:41and talk
37:42about it
37:42no
37:42no
37:44no
37:45no
37:45no
37:46well
37:47at the
37:47very least
37:48i need
37:48to figure
37:48out if
37:48we need
37:48to do
37:49anything
37:49like
37:49refill
37:50medication
37:50so why
37:51don't
37:51we
37:51at least
37:51have
37:51that
37:51i don't
37:52i don't
37:52you don't
37:53you don't
37:53medications
37:54that i'm
37:55i know
37:56but
37:56i do
37:57prescribe
37:57some
37:57so let
37:58me
37:58go
37:58and figure
37:58that out
37:59okay
37:59you want
38:01to come
38:01with me
38:01or no
38:01okay but
38:02i'm gonna
38:03take janice
38:03with me
38:03okay
38:04you don't
38:04leave though
38:05okay stay
38:05here
38:05okay
38:06they're
38:10got her
38:10right
38:11they're
38:11watching
38:11yes
38:12hannah
38:12is
38:12with
38:13her
38:13thank
38:13you
38:14can you
38:15predict
38:16what the
38:16triggers
38:16are gonna
38:16be
38:17sometimes
38:18yes
38:19it's telling
38:19her something
38:20she doesn't
38:20want to
38:21hear
38:21she gets
38:22like it's
38:23embarrassing
38:23and i
38:24understand
38:25the anger
38:25i get
38:26you
38:32you
38:32you
38:32may
38:33need
38:33to
38:34get
38:34involved
38:35with
38:35the
38:35sue
38:35situation
38:36she
38:36wants
38:36to go
38:37home
38:37all right
38:50sue that's a
38:50red light
38:51yeah car's
38:53coming
38:53let's wait
38:58let's wait
38:58let's wait
38:58let's wait
38:59sue let's
39:01wait
39:01this one
39:08up here
39:09that was
39:10me
39:11and
39:11my sons
39:13carlos
39:15and then
39:16society
39:16lives up
39:20in the
39:20mountains
39:20now
39:21this role
39:25as a
39:26caregiver
39:26is an
39:27emotional
39:28rollercoaster
39:29ride
39:29i had to
39:31learn how
39:31to adapt
39:32with the
39:32isolation
39:33of not
39:33being able
39:34to share
39:35my 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 soon
39:56okay
39:56you've got
39:57a lot
39:58of life
39:59to live
39:59yet
39:59and i
40:00don't
40:01mind
40:01going
40:02going
40:03early
40:03i'm trying
40:12to get
40:12there
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 down
40:17broadway
40:18please sir
40:19she's 139th
40:27now
40:27almost at
40:28138th street
40:29so let's go
40:31please
40:31god
40:36i wish
40:47i wish i could
40:47have helped
40:47my brother
40:48good night
40:51okay
40:51i love you
40:53i'll see you
40:55in the morning
40:55alrighty
40:56the thought
40:57of not doing
40:58enough
40:59for my dad
40:59weighs heavy
41:00on me
41:01and i gave
41:07your toothbrush
41:07and toothpaste
41:08brush your teeth
41:09before we start
41:10today
41:10is that okay
41:11if i get your
41:13toothbrush and
41:14toothpaste for
41:15you
41:15is that alright
41:16with you
41:17do you want to
41:21brush your teeth
41:22in this bathroom
41:22or am i
41:23i know
41:23we're gonna do it
41:24okay i'm just
41:25i'm just asking
41:26because i'll bring
41:27your toothbrush
41:28and toothpaste
41:28to you
41:29um that's
41:31soap for your
41:31hands here
41:32let me just
41:32put this on
41:33your toothbrush
41:34i need to
41:35do it
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
42:31also know
42:33that it's
42:34never going
42:34to get
42:34better
42:35there's my little
42:50baby
42:50is that your baby
42:54submarine
42:55that submarine
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 here
43:08who sit here
43:10and play
43:13cards or whatever
43:14did you work
43:16in here
43:16yeah
43:17everybody on the
43:19submarine
43:19works in
43:21every position
43:23at one time
43:24so you'd have
43:26to learn
43:26everything about
43:27what these
43:28you'd have
43:29to yeah
43:30somebody gets
43:32killed
43:32that is in
43:33one area
43:34you'd have
43:35to go do
43:35that job
43:36in his
43:36area
43:37how did you
43:41flush the
43:41toilet
43:41it doesn't
43:42look like
43:42there's a
43:42lever
43:43big farts
43:46my approach
43:52right now
43:52is to create
43:53a space
43:54for him
43:54to be
43:55confident
43:55and comfortable
43:56becoming
43:58someone he
43:59can lean
43:59on
44:00when he
44:00needs it
44:01spend a
44:06long time
44:06in the early
44:30stages of my
44:31dad's
44:31dementia
44:32i didn't know
44:33what a caregiver
44:34was
44:34i didn't know
44:35what
44:36alzheimer's
44:37was
44:37so thank
44:38you again
44:39for agreeing
44:40to meet
44:40with us
44:41sb639
44:43would create
44:45alzheimer's
44:45diagnostic
44:46hubs
44:47to train
44:47providers
44:49and expand
44:50access
44:50to early
44:51detection
44:51and diagnosis
44:52i started
44:54advocating
44:55with the
44:55alzheimer's
44:55association
44:56i'm gonna
44:57talk about
44:58sb639
45:00which would
45:01create
45:01alzheimer's
45:02diagnostic
45:03hubs
45:04sb639
45:07i feel
45:09a sense
45:10of purpose
45:11to give
45:12back
45:12to other
45:14caregivers
45:15say
45:16and all
45:17say
45:20and all
45:20oh
45:24delivery
45:31delivery
45:33delivery
45:34but you have
45:35to get
45:36it up
45:36to get
45:36it
45:36i'll put
45:37it over
45:37here for
45:37you
45:37while you get dressed, okay?
45:39Okay.
45:43It's been very difficult to find a caregiver
45:46who is right for taking care of Sue.
45:51It's not just anybody that can walk in
45:54and deal with her anger.
46:02I sent out 300 emails to folks I know.
46:05I'm just going to put more flowers on Janice's hat.
46:08Yes, make my hat very pretty.
46:11And I finally got in touch with Joe.
46:14He's amazing.
46:15He's very good with Sue.
46:17Look at that.
46:19Beautiful.
46:21Beautiful.
46:24We got into the CDPAP program,
46:27which is run by the state,
46:29which helps pay for Sue's care.
46:35Act like you're having a good time.
46:38I am.
46:42It allows me to breathe a bit
46:46and not worry about Sue all the time.
46:50And that's an amazing gift.
46:54It also allowed me to be able to pick up work
46:59directing a play.
47:01Sydney's at the hospital for observation.
47:03Does she know what's happening?
47:05Hard to tell.
47:06She's been crying all day,
47:07but not speaking.
47:09The play deals with dementia
47:11and the downhill slide of that.
47:15And it's a comedy.
47:18Jesus, look around you.
47:20We're surrounded by suffering in this place.
47:22Okay, good.
47:28Let's stop.
47:29Good.
47:31Look, if you can't laugh...
47:34Perfect.
47:36You know what?
47:36As they try to...
47:37Wait, wait.
47:38And if they try to...
47:39If you try to sneak away and he's here...
47:43You can stop him right here.
47:44I've become a lot more active on social media.
48:00It's been pivotal to my mental health, truly.
48:03I have been connecting with other caregivers.
48:13Exchanging stories, exchanging remedies, exchanging fears.
48:18I went from having a handful of direct messages
48:25to having upwards of a hundred direct messages a day.
48:32I just want you to know that this is a place
48:34that you can be able to come to
48:35because this is tough.
48:38It is tough.
48:39We need each other.
48:41Oh, my.
48:46I love this picture.
48:48Oh, that was another nice one, yeah.
48:50This is one that I love.
48:53Oh, yeah.
48:56My biggest hope is just that we find each other again.
49:01I know it'll be different,
49:03but I'm really hoping that we can just feel connected
49:05with one another.
49:07I love you, Lord.
49:14Mm-hmm.
49:15And I lift my voice
49:22to worship you.
49:29Oh, my soul, rejoice.
49:34Take joy, my King
49:41In what you hear
49:49Let it be a sweet, sweet song
49:56Let it be, let it be a sweet, sweet sound
50:05In your ear
50:12Oh, fastball.
50:18I am starting to make a little bit more peace
50:27with the hard parts of this.
50:31Okay.
50:32I'm learning to live in the present with her.
50:37We've had a small family of very resilient women.
50:42That's true.
50:43We don't like to just say,
50:47Oh, no, we can't do anything.
50:49Mm-hmm.
50:49We hold on.
50:51Yes, we do.
50:51There's a lot of stuff that has changed in our lives,
51:05and we've adapted to it.
51:08And that's not to say it's been easy,
51:09but it's what it is.
51:11And so...
51:12So, yeah.
51:15Anyway, we're still good, right?
51:18Always.
51:19That's the right answer.
51:20Can you tell me your lifelong goal?
51:34It's already done.
51:36Having two sons.
51:43There.
51:46My job is done.
51:48If you asked me if I would do this over again,
51:59I'd say yes.
52:01I'd go through all this pain
52:02for my dad.
52:04Oh, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no.
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