At 13, Jay Hung became a caregiver: Now he’s built a support community

Jay
Hu g,
13,
became
a
you g
ca egive
(ce te )Sc ee shot
f om
CHCH
News

Whe
most
tee age s
a e
focused
o
school,
f ie dships
a d
weeke d
pla s,
Jay
Hu g
was
lea i g
how
to
ca e
fo
his
mothe .
At
just
13,
the
Quee ’s
U ive sity
stude t
became
a
you g
ca egive
afte
his
mothe
was
diag osed
with
late-stage
ca ce .
Yea s
late ,
Hu g
is
usi g
that
expe ie ce
to
help
othe
you g
Ca adia s
feel
less
isolated
a d
mo e
p epa ed
fo
a
ole
they
ofte
take
o
without
wa i g.I
a
i te view
with
CHCH’s
Mo i g
Live,
Hu g
spoke
about
his
ca egivi g
jou ey
alo gside
Amy
Coupal
of
the
O ta io
Ca egive
O ga izatio .
The
segme t
highlighted
a
la gely
u see
eality:
a
estimated
1.2
millio
you g
people
i
Ca ada
p ovide
ca e
fo
a
family
membe
while
also
t yi g
to
keep
up
with
school,
social
life
a d
thei
ow
emotio al
eeds.Hu g’s
sto y
shows
why
you g
ca egive s
eed
mo e
tha
occasio al
advice.
They
eed
pee s
who
u de sta d
the
complicated
mix
of
love,
fea ,
espo sibility
a d
exhaustio
that
comes
with
suppo ti g
someo e
who
is
ill.A
childhood
that
cha ged
ove ightHu g
became
a
ca egive
i
2019,
whe
his
mothe
was
diag osed
with
late-stage
ca ce .
At
the
time,
he
was
o ly
13.Fo
ma y
you g
people,
a
pa e t’s
se ious
ill ess
ca
make
home
life
feel
u familia
almost
immediately.

Eve yday
outi es
may
cha ge,
hospital
visits
may
become
f eque t,
a d
child e
ca
fi d
themselves
helpi g
with
p actical
tasks
while
t yi g
to
u de sta d
f ighte i g
medical
i fo matio .They
may
also
p ovide
emotio al
suppo t
by
keepi g
a
loved
o e
compa y,
offe i g
e cou ageme t
o
simply
t yi g
to
make
difficult
days
feel
mo e
ma ageable.
Eve
whe
a
you g
pe so
is
ot
espo sible
fo
eve y
aspect
of
physical
ca e,
the
emotio al
weight
ca
be
substa tial.Hu g
has
desc ibed
the
expe ie ce
as
o e
ma ked
by
isolatio
a d
lo eli ess.
He
did
ot
always
have
pee s
who
u de stood
what
he
was
goi g
th ough,
a d
he
ofte
lacked
the
la guage
to
explai
his
ole.
A
tee age
may
k ow
that
they
a e
helpi g
a
pa e t,
but
may
ot
yet
ecog ize
themselves
as
a
“ca egive .”That
lack
of
ecog itio
ca
make
it
difficult
to
ask
fo
suppo t.
You g
ca e s
may
wo y
that
f ie ds
will
ot
u de sta d,
teache s
will
see
them
as
u eliable,
o
elatives
will
assume
they
a e
copi g
bette
tha
they
eally
a e.The
hidde
espo sibilities
of
you g
ca e s

ep ese tative
image

You g
ca egive s
suppo t
family
membe s
i
ma y
diffe e t
ways.
Some
help
with
pe so al
ca e,
meals,
medicatio
emi de s,
t a spo tatio
o
household
cho es.
Othe s
assist
with
commu icatio ,
appoi tme ts
a d
pape wo k,
o
p ovide
compa io ship
a d
emotio al
eassu a ce.The
Alzheime
Society
of
Ca ada
defi es
you g
ca egive s
as
people
u de
30
who
p ovide
ca e
fo
a
family
membe ,
f ie d
o
eighbou .
The
pe so
eceivi g
ca e
may
be
livi g
with
ca ce ,
deme tia,
a
disability,
a
ch o ic
ill ess,
a
me tal-health
co ditio
o
a othe
se ious
challe ge.Fo
a
tee age ,
these
espo sibilities
ca
ove lap
with
schoolwo k,
exams,
ext acu icula
activities
a d
the
p essu e
to
pla
fo
the
futu e.
The
esult
is
ofte
a
double
life:
o e
ide tity
at
school
a d
a othe
at
home.A
you g
ca egive
might
atte d
class
afte
spe di g
the
mo i g
helpi g
a
pa e t
get
eady,
o
complete
a
assig me t
while
wo yi g
about
a
medical
appoi tme t.
They
may
appea
to
be
ma agi g
o mally
while
p ivately
feeli g
ti ed,
a xious
o
guilty
fo
wa ti g
time
away
f om
home.The
ole
ca
also
be
emotio ally
complicated.
You g
people
may
feel
deep
love
a d
p ide
i
helpi g
thei
families,
while
also
expe ie ci g
f ust atio ,
sad ess
o
ese tme t.
These
feeli gs
do
ot
mea
they
ca e
a y
less.
They
eflect
the
eality
of
ca yi g
espo sibilities
that
ma y
people
thei
age
have
eve
had
to
co side .Tu i g
pe so al
expe ie ce
i to
suppo tRathe
tha
keepi g
his
expe ie ce
p ivate,
Hu g
bega
looki g
fo
ways
to
c eate
the
suppo t
system
he
wished
he
had
fou d
ea lie .At
Quee ’s
U ive sity,
he
became
i volved
i
effo ts
to
make
you g
ca egivi g
mo e
visible.
He
is
a
co-fou de
of
Youths
fo
Hospice,
a
i itiative
focused
o
suppo ti g
a d
aisi g
awa e ess
fo
you g
people
ca i g
fo
loved
o es
eceivi g
hospice
o
palliative
ca e.
He
has
also
helped
build
the
Quee ’s
You g
Ca egive s
Commu ity,
k ow
as
QYCC.The
goal
is
ot
to
tell
you g
ca egive s
how
they
should
feel
o
to
offe
a
o e-size-fits-all
solutio .
It
is
to
give
them
a
place
whe e
they
ca
speak
ho estly
with
people
who
u de sta d
the
expe ie ce
fi stha d.Pee
commu ities
ca
be
especially
valuable
because
they
educe
the
p essu e
to
explai
eve y
detail.
A
you g
ca egive
may
ot
eed
to
desc ibe
why
a
hospital
visit
cha ged
thei
schedule
o
why
they
ca ot
atte d
a
eve t
at
the
last
mi ute.
Othe s
i
the
g oup
may
al eady
u de sta d.Hu g
a d
his
pee s
a e
also
helpi g
cha ge
the
la guage
a ou d
ca egivi g.
Nami g
the
ole
ca
be
a
impo ta t
fi st
step.
O ce
you g
people
ecog ize
that
they
a e
ca egive s,
they
may
be
mo e
likely
to
seek
suppo t,
equest
flexibility
at
school
a d
co ect
with
available
esou ces.Suppo t
that
exte ds
beyo d
campusAlthough
Hu g’s
wo k
is
li ked
to
Quee ’s,
the
eed
eaches
fa
beyo d
o e
u ive sity.
Ma y
you g
ca egive s
a e
still
i
high
school,
wo ki g
pa t-time,
atte di g
college
o
e te i g
the
wo kfo ce.
Some
live
i
homes
whe e
ca egivi g
is
co side ed
a
p ivate
family
matte
a d
is
a ely
discussed
outside
the
household.O ga izatio s
such
as
the
O ta io
Ca egive
O ga izatio
offe
p og ams
desig ed
specifically
fo
you g
ca egive s.
These
i clude
pee -suppo t
g oups,
o e-to-o e
pee
me to i g,
o li e
commu ities
a d
i fo matio
about
ma agi g
st ess,
elatio ships
a d
espo sibilities.You g
Ca egive s
Co ect,
fo
example,
se ves
people
aged
15
to
25
a d
p ovides
oppo tu ities
to
sha e
feeli gs
with
othe s
who
have
simila
expe ie ces.
Its
pee -suppo t
g oups
a e
facilitated
by
t ai ed
i dividuals
with
lived
expe ie ce
of
ca egivi g.These
se vices
matte
because
t aditio al
ca egive
p og ams
a e
ofte
desig ed
with
olde
adults
i
mi d.
You g
people
may
eed
diffe e t
fo ms
of
suppo t,
i cludi g
help
commu icati g
with
teache s,
bala ci g
school
deadli es,
mai tai i g
f ie dships
a d
p epa i g
fo
t a sitio s
such
as
leavi g
home.Buildi g
a
cultu e
of
ecog itio Hu g’s
wo k
also
highlights
the
impo ta ce
of
schools
a d
u ive sities
ecog izi g
you g
ca egive s
befo e
they
each
a
b eaki g
poi t.Teache s,
cou sello s
a d
campus
staff
ca
help
by
aski g
se sitive
questio s,
offe i g
flexible
deadli es
a d
maki g
stude ts
awa e
of
co fide tial
suppo t.
They
do
ot
eed
to
k ow
eve y
detail
of
a
stude t’s
family
situatio
to
p ovide
compassio
a d
p actical
assista ce.F ie ds
ca
also
make
a
diffe e ce.
Simple
gestu es
like
checki g
i ,
liste i g
without
judgme t
o
u de sta di g
whe
pla s
cha ge
may
help
a
you g
ca egive
feel
less
alo e.
The
most
useful
espo se
is
ofte
ot
advice,
but
eassu a ce
that
thei
expe ie ce
is
valid.At
the
same
time,
you g
ca egive s
should
ot
be
expected
to
ha dle
eve ythi g
by
themselves.
Pee
suppo t
ca
p ovide
co ectio ,
but
p ofessio al
cou selli g,
espite
se vices
a d
medical
o
social-wo k
assista ce
may
also
be
ecessa y.A
message
fo
you g
people
ca yi g
too
muchHu g’s
jou ey
bega
with
a
pai ful
cha ge
i
his
family
life,
but
it
has
g ow
i to
advocacy
fo
othe s.
His
expe ie ce
demo st ates
how
pe so al
ha dship
ca
i spi e
p actical
actio
without
e asi g
the
difficulty
that
caused
it.By
helpi g
c eate
commu ities
such
as
QYCC
a d
Youths
fo
Hospice,
he
is
maki g
space
fo
you g
people
who
may
have
p eviously
felt
i visible.
He
is
showi g
them
that
ca egivi g
is
ot
somethi g
they
have
to
avigate
i
sile ce.Fo
you g
Ca adia s
suppo ti g
a
ill
o
disabled
loved
o e,
ecog itio
ca
be
powe ful.
They
a e
stude ts,
f ie ds,
sibli gs
a d
child e
—
but
they
may
also
be
ca egive s.
Thei
espo sibilities
dese ve
u de sta di g,
thei
wellbei g
dese ves
atte tio ,
a d
thei
voices
dese ve
a
place
i
co ve satio s
about
health
a d
family
ca e.Hu g
became
a
ca egive
at
13.
Now,
as
a
Quee ’s
stude t,
he
is
helpi g
e su e
that
the
ext
you g
pe so
faci g
a
simila
expe ie ce
does
ot
have
to
believe
they
a e
alo e.

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