The Lighter Side of Hospice

Humor is an unlikely but welcome bedfellow

This is another post calling out people and resources I’ve found valuable, helpful and, in this case, even entertaining. I hope they can help you build your support and information network as you take on whatever you’re facing!

I am a huge fan of hospice. If they had a pep squad, I’d be captain. That’s probably why I ran across Denise Napoli Long’s Substack. In it she shares, among other things, her observations from being a Hospice nurse. Specifically her beat is: “Thoughts on hospice, death, dying, living, motherhood, poetry and writing by a hospice nurse/writer/mom.”

Regarding hospice, she delivers her observations on this emotional and delicate time in short takes, lightened and sweetened with humor.

We’ve talked a lot about the value of humor here on the Mothership, especially related to dementia care. In the early days I recalled how my friend Cindy Pierce guided me through family dynamics with laughter-fueled walks, and in The Best Medicine, how she and other comedians bring humor to the dementia community. We’ve also talked about hospice—in “H is for Hospice” in The Beginning of the End in Hospice For Dummies and finally in The Not So Secret Handshake.

Humor and hospice may not seem a natural combination, but their pairing also makes perfect sense. Humor normalizes a natural process—dying—that every single one of us will experience yet rarely discuss. It is an inevitable event for which we are, somehow, totally unprepared. Of course there is going to be some weird sh*t going down. We might as well enlist it for a laugh.

THE RIGHT STUFF

I’m not talking here about bringing slapstick humor to the most dire situation; rather, humor helps call out the absurdity in the human condition. It can be the release of tension everyone longs for but struggles to find.

My Uncle Thierry was the master at this. No matter how grim things were, he’d find that thing that was ironic, or nonsensical or in some undeniable way entertaining; or he’d call out the elephant in the room that everyone had noticed but somehow seemed taboo. He’d do it in a kind way that gave you permission to crack the sacred shell around heartbreak and let some light in.

I am not sure what first grabbed me about Denise’s posts but I am a sucker for the straight talk of hospice, for putting friendly words to intense feelings and situations. Seeing them lets you move through them. So many of the topics bring back our own experience and I imagine these posts could be a helpful resource to someone in the hospice space now.

A FEW OF MY FAVES

Recently one that grabbed me was “What’s a good food for a hospice patient to eat?” Short answer: Whatever the hell they want! She does qualify that it has to be something they can chew or swallow without choking; and she goes on to say what she’ll do to anyone trying to shove Ensure down her throat in her final days. It reminded of a friend recalling when her grandfather was in the hospital (not in hospice care), in his final 48 hours of life. He requested ice cream, and the nurse on duty responded that it was not on his diet plan, due to his diabetes. “My mom nearly flipped her lid!”

Another post that brought flashbacks was this one, “IT MIGHT BE PAIN” where she takes on how to assess causes of agitation. As noted in The Not So Secret Handshake, when I figured out that all the behaviors I had been seeing in my mom, who was unable to express herself verbally—that all those things were actually pain, I felt so badly and so stupid. Of course they were pain; but, like many people in that situation for the first time, I was unable to make that simple assessment.

I appreciated her thoughts on what “the end” for dementia patients looks like:

“You’re not alone in wishing that it would just be over. You’re not alone in not wanting to spend too much time in the room with your loved one with dementia. It’s depressing, and there’s nothing anybody can do.

It’s February now. Sometimes in dementia land it feels like it’s always February. It’s just dark and cold and sad and quiet and miserable.

But spring will come again.”

And I love the honest assessment in her post about being able to estimate how long someone has to live:

“All I’m saying is, for all our technology, all the computers that think for us, all the gizmos and gadgets and levels and scans, we don’t know shit, really. It ain’t up to us. I don’t know who it is up to, but she’s inscrutable af.”

Even though it is something I have not yet had to navigate, I found her explanation about why we don’t give IV fluids to patients in hospice logical and also fascinating. After listing all the ways excess fluid can cause suffering she says this:

“As the body dies, patients stop taking in fluid. There’s a reason. The body is protecting itself from these things. Letting that happen is ok. It’s mercy. It’s reality.”

She talks about hospice patients with pets having better outcomes, the complicated emotions of caring for someone who was not a good caregiver themselves, and all kinds of other things that pop up along this road of real life. Unlike my posts (sorry!), hers are short—mostly observations from her own experience without a lot of stats or studies to bog you down.

Finally, I love this note she has to the many caregivers who wonder if they are doing it well or right:

“If you’re reading this depressing-ass Substack, that means you care. You give a shit. You’re trying to get it right. You second-guess yourself because you want to get it right.

Be confident. Just by showing up, noticing, trying, speaking up, feeling your way towards gentleness, you are hitting the mark.”

That’s it for today. Thanks for reading!

Up Next: Momisms: a new space for old advice that endures.