What is The Long Goodbye?
Dementia caregiving. Sometimes called the long goodbye because you may spend years mourning and grieving for someone who hasn’t died (yet), but each day they’re a little less here. They aren’t who they were, and give it time, they’re going to change again. You’ll go through all the Kübler-Ross stages: denial, anger, bargaining, depression, and hopefully, eventually, acceptance. Maybe all in the same day, and that’s just a regular Tuesday.
This is a newsletter for anyone caring for an elderly parent or partner with dementia, because murder/suicide is not a great option.
Who am I?
I’m a sixty-something, single, childless, sober writer who’s spent years writing about sex, drugs, and drunkenness. Shortly after turning thirty-three I got sober. I taught creative nonfiction while working full time in a nonprofit and caregiving my elderly mother as she skidded down the road to from mild cognitive impairment to full-blown dementia.
I’m no longer working, or teaching because, face it, I’m exhausted all the time.
Love & Kids. Both felt like a trap and I skirted the commitment & intimacy of a long term relationship. Now, I’m inextricably attached to the long-term care of my Benjamin Buttoning mother, less becoming someone else than she is un-becoming herself.
Years ago, I trained to be a doula for the dying, a companion for those in the last stages of life. It didn’t prepare me for living with someone who would tell me regularly she only has two weeks to live.
I’ve been her caregiver for almost twelve years. After forty years of living blissfully alone (with the exception the occasional bad decision), in 2018, at eighty-eight, she moved in with me. She brought the DNR bracelet she’d requested as a birthday gift, the book, Final Exit, and moved into my bedroom while I moved into a corner of the living room. The last six years we’ve been sharing this not-particularly-large one-bedroom apartment along with, at one point, five cats.
Why here? Why now?
Mom moved in and we expected she had another year, two at the most. It changed me. I remember hearing a friend talk about visiting his mother weekly, even though she no longer knew who he was. I remember thinking, pay attention, this is going to be you one day.
So, I take pictures & videos & write to record who we are, who we were, who she is, who I am. This is for those who are where I am now & for you who expect to be here. Because we cannot, should not, and do not have to do this alone.
What you’ll find inside…
Some popular posts
Resources - from government agencies, to definitions, to additional readings
How’s Mom They Ask - An rant about empty platitudes aka thoughts & prayers
This is What Safe Feels Like - Sometimes, all that remains in dementia, is the sense of touch
What subscribers are saying…
"I love when people write on topics that some people are afraid to read." Sanna Salanimi - Frisson For Freaks
"Your words resonate with me more than anything else I've read about the journey with dementia as a caregiver. Even though my mom passed recently, it helps to know someone out there truly gets it."
Leslie Adams
"Thanks for being so open and honest about being a caregiver. It's very helpful to me."
Rachel Kramer Bussel’s Newsletter and Open Secrets
"Jodi's Long Goodbye is about living, it's heart-wrenching beautiful and fun. She admits things: "She knew what things did, but not how to name them. Her silverware drawer was "the place we keep the things we eat with." You know where and how it will end, but..."
Prajna O'Hara - The Salty Crone
subscribers get:
Every week I’ll take a look at something from my life as a caregiver for a parent
Occasionally, I’ll resurrect something from the earlier years when we referred to each other as Big and Little Edie, a folder I call Grey Gardens 11372, an homage to the originals and a nod to the dysfunction and closeness of our relationship, plus, all those cats.
Resources - articles, videos, instructions, first person accounts, agencies on caregiving and end of life
paid subscribers also get:
Ability to comment and join the chat community of caregivers
A warm feeling, like peeing in a pool, for supporting this newsletter, and me.
The Open Sandwich Discount:
You’re over 50,
You’re caring for an elderly parent, spouse or partner, and
You’re doing it on your own;
You deserve a break
Whether you can pay now, or not, please share The Long Goodbye with your friends and on social media. You can usually find me somewhere as @jshdoff
