The Guilt That Never Fully Leaves
No matter how much you care, how much you do, how many nights you don’t sleep and how many
things you get right — it’s never perfect. Not for me, and I don’t believe it’s perfect for any caregiver. I
want to write about two moments that still sit with me, because I think a lot of caregivers are carrying
something almost identical, and maybe hearing mine will make yours a little lighter to hold.
My Dad, and the Nurse Who Was at Dinner
I was 24 when I was my dad’s caregiver during his hospice care, and the medications were entirely on
me. No one really explained dosing to me — it was written on the bottles, and that was it. I was terrified
of morphine and Ativan. Terrified of giving too much. So I followed the label exactly, to the letter, every
single time.
On what turned out to be his last day, he was in real pain and clearly uncomfortable. I called the on-call
hospice nurse and told her I’d already given him morphine an hour or two before and that he needed
more. She told me she was out to dinner and that I should just follow the directions on the bottle.
I listened to her. I always will carry guilt for that. Not because I did anything medically wrong — I later
learned you can’t actually overdose a hospice patient by following proper guidance, and I was following
exactly what I’d been told — but because my gut was telling me he needed more relief, and I let a
stranger’s indifference on the other end of a phone call override what I already knew as the person in
the room with him.
If I could go back and tell 24-year-old me one thing, it would be this: when you are the one there,
watching, caring, paying attention every single day — trust that. More than any on-call nurse who’s out
to dinner and doesn’t know your father. More than a label. Your gut, earned through months of showing
up, deserves more weight than it’s often given.
My Mom, and the Week I Sent Her to Respite
With my mom, the guilt looks different.
At one point I sent her to respite care through hospice — a short stay meant to give caregivers a break.
While she was away, I used that week to repaint the living room and dining room, shampoo the rugs,
return all of her old medical equipment, and replace it with new: hospital bed, nebulizer, oxygen
concentrator, commode, walker. I even added a bell to her bed so she could never get up again without
me knowing.
The respite facility didn’t take care of her the way they should have. They didn’t follow a single
instruction I’d written down for her care. And I’ve wondered since whether she may have even refused
to admit she felt worse there, knowing that saying so would only bring me running to check on her.
She came home from that week and never got up on her own again. She was too weak.
I carry guilt over sending her there in the first place, even though respite exists precisely because
caregivers cannot run on empty forever, and even though I used every hour of it trying to make her
homecoming safer and better. My own mother reminded me more than once to “get over it” — which, if
you read my last post, you already know was never said at the right moment.
What I Want You to Take From This
If you’re a caregiver reading this and you have a moment like either of mine — a call you didn’t push
hard enough on, a break you took that you now second-guess, a decision that looked right at the time
and haunts you now — I want you to hear this clearly: doing your best while exhausted, scared, and
under-informed is not the same as doing something wrong. Guilt convinces us otherwise. It lies. It
takes the fact that you loved someone enough to notice every small change and twists it into evidence
that you failed them.
You didn’t fail them. You showed up in an impossible situation, with less information than you deserved
and more responsibility than anyone should carry alone, and you did it anyway.
That has to count for something. I believe it does.