This is going to sound crazy, but I didn’t think it’d be this hard. I mean…hadn’t I gone through all sorts of anticipatory grief during Mom’s years with dementia? Somehow, I thought that entitled me to less grief when she died. Or at least that it would diminish the blow for that final end. Wrong.
I got KO’d.
No one can prepare you for the loss of your mother. All my friends who’d trudged this road had warned me, but it’s impossible to comprehend until it happens. Who can steel you against losing your first friend, your first love, your first home?
I want to write about it, pour out my heart and soul, have some sort of healing by facing it on the computer screen — but I just can’t. Or I just won’t. Every time I think I’m ready, I chicken out. I decide “not today.” Sometimes I’d rather keep it to myself, if you know what I mean.
But last night I heard an amazing performance of The Moth (www.themoth.org), a storytelling group. I laughed my head off at the first guy who talked about his crazy cardiac experience — the guy was a stand-up comedian and it was over-the-top funny (and it had a good ending.)
Then it happened: a woman got up and started talking about her mother. She adored her. They were best friends. Her mother got cancer. You know the rest.
I sat there listening to this amazingly honest and raw story, and something broke open in me. I started to cry, then I felt it coming – in public no less – wracking, heaving sobs.
All I could see was my mom, opening the door to her house, showing me for the first time her completely bald chemo-induced head. I palmed her skull and told her she had the most perfectly round head I’d ever seen. We laughed. She was beautiful, and so brave. She was hilarious in spite of it all – joking about being bald like her dad.
She had dementia. She had cancer. She still had a sense of humor.
I feel the tears coming now, and it’s ok. My mother was my heart. She was my inspiration and the love of my life. She loved me when I couldn’t love myself. She loved me when I was a complete ass. She put bandaids on my boo-boos. She bought me a red, white and blue basketball because I wanted one, even though for the life of her, she couldn’t understand why I wanted one. (I think it had something to do with The Harlem Globetrotters.)
One of the last things Mom told me was that she wanted me to “be ok.” I’m working on it.
Most days I am ok, even if I have sobbing moments, or even if I go through the day wearing “lead clothes” as my siblings and I have come to call it. I try to focus on gratitude: that I had such a loving, fun, courageous mother. I’m fully aware that this isn’t standard issue in the mother department.
I seem to be stuck in the first two grief stages: denial and anger. I still can’t believe my mother is dead – it’s just surreal. How can she be absent? I was part of her and she was part of me before there even was a me.
And I’m so damn angry at Alzheimer’s. My mom beat breast cancer by all appearances – she crossed the five year mark just this year. But Alzheimer’s and vascular dementia? That took her away.
It’s too in my face that this is a terminal disease. Why isn’t there more federal funding for this epidemic? Why isn’t there a public outcry, a stampede on Washington? Why did MY mom have to die at 78, a full 17 years before my grandmother left her?
It’s been three months and two days since she died. I know it’s still so early. I know I’m deeply wounded; it’ll be a long time before I move to the scarred stage – the stage at which The Moth folks say a story is best told.
The woman last night? Her mom has been gone 10 years. I wanted to rush up to her afterwards and thank her, but I knew it would be impossible to speak. I’d just stand there and sob.
I’d moved from tears to laughter again, and wanted to stay there. The remaining storytellers shared tales of racial discrimination, false Google death rumors, and burnout — no more dying mother stories. All made me laugh out loud, despite their pain.
This is the storytelling miracle: your trauma can be translated into joy. I know this; but I’m not scarred enough yet to get there.
So for now, I’ll reach out periodically and say hello. I won’t stop fighting the dementia beast, won’t stop talking about caregiving survival, won’t stop studying and discussing new trends in dementia research and treatment. But if you’ll forgive me, for now I just need to take a respite and mourn.
Spaces between posts may be longer. Stories may be more focused on surviving the end of Alzheimer’s, not the beginning and middle of it. I’m just not sure.
All I know is that I’m down, but certainly not out.