The Kids Who Carry Too Much

Child caregivers are no longer uncommon and the numbers are rising.

Episode Transcript

Speaker 1 (00:16):
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, You
are loved. Hello, and welcome to We Have a Voice Radio.

(00:41):
My name is Kevin Jess. I'll be your host today.
Today my monologue that I've been doing lately, I'm going
to talk about the kids who just carry too much.

(01:01):
So imagine for just a moment that you're fourteen. You
should be worried about math tests and whether you're crushed
likes you back, but instead you're spoon feeding your dad.
You're refilling his meds, and you're helping him stand when
his body refuses to. You're not just a kid anymore.

(01:24):
You're a caregiver. It sounds rare, doesn't it. But here's
the first gut punch. Over one point two five million
young people in Canada are caregivers. That's one in five
kids quietly doing adult jobs, quietly slipping through the cracks.

(01:50):
I don't know what the statistics are in the United States,
but I'm sure they're there. The statistics would be astounding.
So they're like a hidden workforce. We talk about essential workers,
but these kids, they're the invisible essential workforce. No job title,

(02:14):
no paycheck, no lunch break, just responsibility that no one sees.
A recent CBC article spotlighted these young caregivers. Their stories
don't make headlines, but they should. One seventeen year old girl,
her mom has ms. She gets up at five am

(02:37):
every morning, helps her mom out of bed, makes breakfast,
manages the meds, then rushes to school. That's her normal. Now,
this article was written from twenty eighteen Census Canada, where

(03:02):
they ask some questions and that's how they got these statistics. Now,
it didn't include people who were actually under fifteen, but
we know they exist a lot of them. So that
number is much actually a little bit higher than that.

(03:22):
So so when she gets to school, this girl, this
seventeen year old girl, she's tired. The teachers, well, they
think she's lazy. Friends think she's flaky. She's failing classes,
not because she doesn't care, but because she cares too much.

(03:46):
I want to be a nurse one day, she said,
but I can't even finish my homework. That's the reality.
Kids who know how to care for a sick parent
better than they know algebra, so they lose their childhood.
Here's the thing about childhood. It's supposed to be temporary.

(04:10):
That's true. It is supposed to be temporary, But for
caregivers it ends early or never really starts. Birthdays go
by quietly, no sleepovers, no Friday nights when other kids
learning how to skateboard, or when other kids are learning
how to skateboard or go to parties. These kids are

(04:30):
learning how to inject insulin, how to hide a parent's
illness from classmates, how to stay calm during a seizure.
Can you imagine the anxiety, the constant fear of what
if something happens while I'm at school, the guilt of
stepping out the door, leaving someone who depends on you behind.

(04:51):
One person said I skipped prom because my dad needed
help that night. Another said I never joined soccer because
I can't leave the house after school. Another, I don't
invite people over because what would they think. That's how
isolation starts. That's how emotional development bends inward. Now what

(05:13):
about Huntington's So let's narrow the lens, because there's one
group of child caregivers facing an especially cruel version of
this reality those with family members suffering from Huntington's disease.
If you don't know Huntington's, imagine Parkinson's Alzheimer's in a
mood disorder rolled into one. It causes involuntary movement, memory loss,

(05:37):
personality changes, and emotional instability. It is progressive, it is inherited,
and it is brutal for kids. It's like watching a
parent disappear piece by piece, first mentally, then physically. And
while most kids have a parent helping them grow up,
these kids are growing up while trying to hold a

(05:58):
parent together. One teen said, my dad used to be funny.
Now he barely talks. He gets angry. I don't know
if it's him anymore or the disease. So what kind
of grief doesn't come with closure? Or that kind of
grief doesn't come with closure, it's just stretches out for years.

(06:20):
And here's the kicker. Many of these these kids know
there's a fifty percent chance they might inherit the disease too,
So they're not just watching the future. They might be
watching their future. So what about school and friends? So
try going to school with that on your shoulders. One

(06:41):
minute you're trying to stay awake in class. The next
your phone vibrates, Mom fell again. You fake a stomach ache,
you run home. No one asks why you're late. You
just stop showing up. These kids miss school not because
they're reckless, but because they're responsible. But the system doesn't

(07:03):
see that, and friends, friends drift away. It's hard to
say yes to movies when you're cleaning up accidents and
managing meds. I used to have friends, one girl said,
But after saying I can't come too many times, they
just stopped asking. We don't just lose grades when that happens,

(07:23):
we lose dreams, self worth, confidence, the idea that we're
kids with futures, not just shadows in the background. So
what is the toll? So let's talk mental health. Caregiving
as a team is linked to higher rates of anxiety, depression,
and even PTSD. Some of these kids develop what psychologists

(07:46):
call parentification when they feel more like a parent than
a child, and because it's so invisible, they rarely get
therapy or accommodations or someone just asking are you okay?
We ask kids to grow up, but never like this.

(08:08):
So what now? First, you need to see them. If
you're a teacher, please check in, just talk to them.
If you're a neighbor, ask questions. If you're a healthcare worker,
refer for support. These kids won't raise their hand, not

(08:30):
because they don't want help, but because they don't know
how they're allowed to. We need better school accommodations, youth
respite programs, financial assistance, and most of all, we need
to stop pretending these stories don't exist. To the young
caregiver out there listening, and you are not alone. What

(08:52):
you're doing is heroic, but you deserve help, rest and joy,
and you need a life in a world that too
often overlooks the quiet struggles. Let's not miss the kids
who carry the heaviest burdens, especially those caring for a
parent with Huntington's disease. You may not see them, but

(09:16):
they're everywhere, folding laundry, heating soup, taking notes on meds
instead of math. Their strength isn't in the spotlight, but
maybe it's time we put it there. If you know
a young caregiver, reach out, let them know we see

(09:36):
you and we've got your back, and let them know
that they are loved.