A Hospice Conversation in Two Parts
I recently came across a blog post (Speaking Up About Hospice) that had particular impact for me, as I now find myself in the position of professional/kinda-sorta family member.
Florence (not her real name, of course) has been my client for almost exactly three years now. She doesn’t have children, and I am her guardian. To my mind, that makes her my family. Florence is dying of Alzheimer’s disease.
Part One
In April of 2013, she came down with a bladder infection (UTI, in professional-speak) so severe, she had to be hospitalized for a week. Florence then moved to a skilled nursing facility so she could get IV antibiotics every twelve hours for two weeks.
Having worked with over 800 people with dementia at the time, I agonized over the decision to proceed with treatment. I knew people didn’t just bounce back to how they were prior to an infection. However, I believed she still had quality of life, and she could again.
A Miracle
To my utter amazement, after treatment she returned to what we call “baseline”—she was her same old self, just like before the infection. With the combination of Alzheimer’s disease and an UTI, that’s virtually unheard of; I’d certainly never seen it.
Her primary care physician and I discussed what to do if this happened again. More accurately, we discussed what to do when she developed the next UTI. While acknowledging the apparent miracle this time, we also understood the very slim chance of a second miracle.
Bringing up Hospice
In the fall of 2013, Florence’s health deteriorated but an UTI wasn’t the culprit. Instead, it looked like “normal” disease progression, which is to say, the slow, steady, and unavoidable decline of Alzheimer’s disease.
I approached her doctor about hospice. He thanked me after the conversation, noting it’s often difficult for doctors to bring it up. He seemed a bit embarrassed he hadn’t been the one to bring it up. Still, he felt it was appropriate to move forward with the referral.
Florence was on hospice for a little over a month before she no longer met the criteria to be on service. As is not uncommon with hospice service, Florence had a “bounce” effect from all the extra TLC the hospice team provided.
Part Two
She was off hospice service, and one good day blended in to another. Soon, we’d strung enough of them together that hospice wasn’t even a thought for me anymore.
That’s why I was shocked when Florence’s doctor brought up the idea of trying hospice again a couple of months ago. I wasn’t oblivious to her condition, of course, but I was in some sort of denial, apparently. Seven months after her “graduation” from hospice service, I’d put it out of my head entirely.
As I answered the hospice nurse’s and social worker’s questions during their evaluation, I was thinking, Well, at least they’ll be able to give me a better sense of how much longer before I need to call them for real.
17 Days
I’ve always thought it’s so sad how many people don’t get the full benefit of hospice. Most people are on service for an average of only 17 days! Only 17 days of loving, compassionate, and extraordinary care for both the patient and the family—when they could be on service for six months (and in some cases, more).
My first experience with hospice was when my first grandparent died, back in 1987. It made a powerful positive impression on me. Professionally, I’ve always prided myself on making sure my residents/clients didn’t end up in a 17-day situation, introducing the idea of hospice early on so their families had time to start thinking about the idea.
“The worst that can happen is they say “not yet,”” I’d tell families. It will give you a better sense of how much longer before you need to call them for real.
Good To Go
“Okay, we’re officially good to go. She’s on service,” the hospice nurse told me as she hung up with the doctor. I stared and blinked. I stuttered, asking, “What? Why? What do you mean?”
In a daze, question after question shot through my mind. How could I have missed this? Did I fail a client who was depending on me to look out for her? How can this be happening? Surely it can’t be time already?
And then I cried. I cried because someone I love is dying, and despite all the wonderful things I know to be true about hospice—heck, despite all the things I know to be true about late-stage Alzheimer’s disease, for Pete’s sake—Florence going on hospice service made it real for me.
This post was originally published 7/7/14. It was updated 9/23/17.
Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.