niceolelevy

An update on Mama Levy and our journey through Lewy Body Dementia.

For years, in my pre-professional writer life, I worked graveyard shifts on jobs because it left me free in the daytime to go to school, to write, and later, to go to meetings. During the most hectic of those times, my undergrad years at USC, I was working as a police dispatcher, and sometimes while I was trying to grab a few precious hours of sleep, my phone would ring, and I’d groggily answer it, annoyed by the interruption.

“Why don’t you turn your ringer off?”

It was a perfectly logical question, especially for someone who worked overnights. But my answer was, to me, just as logical. My father’s health had been in question for years – blood clots in his leg that required him to quit smoking (he would not). I carried a low-grade sense of worry around with me everywhere I went. Would today be the day he got rushed to the hospital because one of the clots shook loose? Was this the time he’d lose his leg (or both legs) and then go into a spinning depression because he couldn’t handle life without his limbs?

It was the small silent “tick, tick” under every single moment of my life from the day I realized something was wrong until the day our clock ran out.

I was, strangely enough, at the police station visiting my former co-workers while procrastinating on a grad school project (I had quit dispatching by then and moved to another overnight job: proofreader for a newswire service.) when that call finally came. So I missed it. And then I got the next call… and everything in me shattered, and I screamed so loud my poor roommate and her house guest thought I was being injured.

I had waited for that call to come for years… I had convinced myself I was prepared for the day. I was being realistic. I knew it was coming. Better to know than be surprised.

Bullshit.

I don’t care what you know. I don’t care how prepared you think you are. The day is the day, and it rips your fucking heart out because losing someone you love isn’t the kind of thing you can be ready for.

So when Mama Levy was diagnosed with dementia (well, incorrectly with Alzheimer’s in 2018, then properly with Lewy Body dementia a year later), I knew better than to think I could prepare for anything that was coming.

I read everything, and I watched what I could… and then I decided I had read and watched enough. I knew the basics. I knew what the progression of her illness generally looked like… what the most common causes of death are. I didn’t need to take in any more information. Because nothing was going to make it easier.

I knew it. I totally did. But what the mind knows, the heart is perfectly willing to ignore.

The one thing I had always hoped – still hope – is that the last memory Mama Levy holds on to is of my father. Their marriage was a complicated, messy thing… but they loved each other and made it damn near 40 years. He was her rock. He made her feel safe enough to be the slightly insane human she needed to be to survive the world. I’ll never fully know all the things that went into making her who she was – she made sure of that. But I know she loved that man… and he loved her.

Any doubt I had was erased when I found a note my mom wrote my dad after he died. She talked about how heavy her grief was, how she didn’t know how – or who – to be without him. And it broke my soul open a bit to know that she used to talk about how much she wished my dad would visit her in a dream… and her sadness that he never did.

So yeah… Dad stays, universe. Not a lot to ask. Dad stays with her in her mind until she decides she’s going to be with him. (I am not a religious person; if you know me, you know that. But I hope for her sake I’m wrong about what happens when we leave this earth… because she misses him so much.)

She doesn’t have his name anymore – she lost all our names in the past few years. But when I show her pictures of my dad, she perks up, flirty in an instant. Sometimes she tells me “Oh, that’s my husband!” And other times, she comments on how handsome that man is, and when I tell her he’s her husband, she sparkles, it makes her so happy.

Of course, in my bargaining with the universe, I knew that you get nothing for free. So if Mom gets to hold on to Dad, well… something else brutalizing has to go. That’s just how it works. We all know the rules.

I had to go.

I accepted it after all that reading and watching I’d done when she was first diagnosed. Eventually she’d look at me and not know who I was. More specifically, she wouldn’t know I was her daughter. It was simply the unavoidable progression of this shitty, unfair disease.

It’s why I made it a point post-pandemic shutdown to go see her so often – despite my hatred of planes. Because as long as she knew it was me, I needed to be there as much as I could. I needed to give us both that – me more than her, really. I needed all the memories I could get while I could get them.

This is our typical exchange when I arrive…

Mom’s asleep or zoned out, not paying attention to anything.

I walk up. Touch her shoulder gently.

“Hi, Mama.”

She looks up, ready to be annoyed – who the hell is bothering her?! Then she sees me, and her face alights… and she smiles.

“Hello! What are you doing here?”

Someone else will inevitably ask her who has come to visit, and she would say, always…

“That’s my baby.”

It’s who I’ve always been. The baby that wasn’t supposed to exist. The baby a whole family wanted. The baby tasked with holding a frayed family together.

And then I was the baby who stayed… who put up with her stinging barbs and her difficult love, who demanded more of her in the aftermath of my father’s death and got it… I was her person. Her baby.

I still am, of course. Always will be. So much of me is the strength and frailty and heart and anger that was my parents, knitted together into a new thing… the baby. Niceole. The one who shouldn’t be but is… who stayed… who loved even when they maybe were unlovable.

I flew to see Mama for Mother’s Day this year because I always see Mama on Mother’s Day, except in 2020 because… pandemic.

I got in a few days before Mother’s Day and popped over just to say hi and give her a hug and see if she needed anything else I could add to her pile of “gifts”… baked goods, a pretty silk flower basket for her door, new pajamas, new socks.

I walked in and found her dozing in a chair. And I walked up and touched her shoulder. And I said, “Hi, Mama.”

And she looked up, ready to be annoyed, then saw it was me and…

Nothing.

No spark. No recognition. No sense of familiarity whatsoever.

She was happy to have my company, and she chattered away at me like she normally does.

She even knew her husband in the photo… and knew the image of 2-year-old me was “her daughter.”

But she didn’t know… never recovered… who I was. The grown adult woman sitting next to her was just some kind person there to see her.

I started crying. Because of course despite knowing it would happen someday, I wasn’t prepared – could never be ready – for it to be TODAY. For this to be the first time she didn’t know I was her baby.

I couldn’t stop tears from leaking out of my eyes, so I left because I never cry in front of her now. I never want her worried about me when I know she can’t make sense of what’s happening with me.

I sat in the car and sobbed… my heart laying in my hands – or at least it felt like it because the pain in my chest was deeper than almost anything I’d ever felt.

Almost.

Except for that day… when the phone rang, and my Daddy was gone.

I cried for everything we’ve lost – for my siblings and nieces and nephews, for her sisters – for all of us who still love Gerri so much but know Gerri left us a long time ago even though my mother is still here.

I cried because even though I’ve been mourning the loss of my Mom for years… I had really lost her now… because she doesn’t see her baby anymore when she looks at me.

I left and spent the rest of the day with my niece and her boys… and they made me smile and reminded me that life is about love.

Oh, love… if only you only came with the good, and never the bad.

Never the horrifying, heartbreaking, unfair bad.

I went back the next day because I wanted to be sure I could be with her without crying. Because Mother’s Day was coming, and I was going to spend Mother’s Day with Mama if it killed me.

I managed not to cry (mostly). And I held her hand. And she loved me holding her hand. And I told her not to worry… that I would always remember. For both of us.

Geraldine “Gerri” Levy is my mom.

And I am her baby.

Always.

Past posts:

The Story of Mom

An update on Mama Levy

A Mama Levy update… because it’s been a while.