The House That Doesn't Sleep

A short monologue about caregiver burnout.

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. Welcome to we have a Voice can or

(00:40):
we have a Voice Radio. My name is Kevin Jess
and I'll be your host today. Do you ever feel
like you're living in a house that doesn't sleep? Have
you ever watched someone's mind unravel? It's not like in
the movies. It doesn't come with dramatic piano music or

(01:04):
slow fade outs. There's no elegant monologue that lets you
know the moment the person you love is no longer
the same. No, it's quieter than that. It's a cereal
box left in the fridge. It's a scream over something invisible.
It's a child you carried your baby biting their own

(01:25):
wrist until it bleeds because their brain told them that
pain makes sense. Now, this is what it means to
be a caregiver in a house with Huntington's disease, and
for juvenile Huntington's, It's like grief moved in before the
funeral even started. I'm not a saint. I'm not strong
because I want to be. I'm strong because if I

(01:48):
fall apart, no one's left to hold the damn pieces.
People think being a caregiver is noble, but noble doesn't
mean you get a lunch break. Noble doesn't mean you
get to cry without hiding in the bathroom while someone
is banging on the door, needing to be wiped, fed, held,
calmed down, explained to again for the third time this hour,

(02:13):
and every time they say you knew what this would
be when you signed up, No I didn't. You can
know the genetics, the statistics, the progression. Sure, you can
read about CG repeats until your eyes blur, but you
cannot know what it's like until you are wiping your

(02:33):
own child's chin because they forgot how to swallow. You
cannot know until your partner, once articulate, charismatic alive, sits
in a chair and yells at ghosts and then forgets
your name five minutes later. This isn't caregiving. This is
time traveling grief because I'm mourning the future, living the past,

(03:01):
and holding on to fragments of the present that vanish
like smoke. The second I get too close, and the burnout.
Let me tell you about that burnout doesn't knock. Burnout
breaks in. It eats your sleep first, then your appetite,
then your memory, your patience, your ability to laugh. It

(03:25):
makes you feel like a monster when you sigh because
someone's spilled the juice again, even though you know it's
not their fault. It's the disease. But some days I
hate the disease so much I forget how to love
the person that's devouring. That's the part no one talks about.
That anger makes you shake because you miss them, even

(03:47):
though they're sitting right in front of you. That split
second when you fantasize about just walking out the door,
just keep walking, and then the guilt yanks you back
like a leash because they didn't ask for this, neither
did you. But you stayed. You always stay, and the

(04:09):
world applauds from afire. You're so strong, they say, But
they don't offer to watch him for an hour. They
don't ask how your back is after lifting her off
the floor when she clapsed from spasms. They don't see
the bruises, the ones you don't tell anyone about, the
ones you explain away because no one wants to hear that.

(04:30):
Sometimes the person you love hurts you, not on purpose,
but it happens. And there's no hotline for that. There's
just a smile you wear like armor when you wheel
them into an appointment. There's just paperwork, pills, app blogs,
food thickeners, blankets soaked with tears. You'll never admit we're yours.

(04:55):
Let me tell you something. There's no glory in this.
There's no metal. But there is love, and not the
kind people talk about, not the Hollywood kind. No, this
love is raw. It's ugly, It's full of resentment and
guilt and too much coffee. It's the love that remembers

(05:16):
when they don't. It's the love that lifts one hundred
and twenty pounds of dead weight at two am because
they wet the bed again. It's the love that sobs
behind the wheel and still makes it to the pharmacy
before closing. It's the love that holds on even when
it doesn't know why. And sometimes I don't know why,

(05:39):
but I do know this. Every single caregiver out there,
the ones caring for someone with Huntington's juvenile HD alss Alzheimer's,
pick your poison. They are warriors, invisible ones, and some
of us are breaking, some of us are burnt toast
walking and no one sees it. So here's what I'm asking,

(06:04):
Not for praise, not for flowers. Just see us. Don't
say you're strong, Say I'm here. Sit down, I'll hold him,
you rest, Say I made food, eat, you don't have
to talk, Say I remember who you are, even if

(06:27):
they can't anymore. Because in a house that doesn't sleep,
that kind of kindness, that's everything. There's a light we
haven't seen in months. So no, I'm not okay, but
I'm still here and that counts for something. And just
remember you are loved.