niceolelevy

She’s fine — I say that first because I don’t want anyone to think this is bad news. It’s just the latest on our journey with dementia and her care and all the emotions that go with that.

I wrote most of this sitting in an airport crying because I was leaving her to come back to California and this weekend was just a rough one — she was wonderful and so glad I was there, but man, did my heart hurt by the time it was over.

Quick update for anyone who doesn’t know — we moved Mama Levy to a new facility last year, closer to where my brother lives. Since we moved her last September, getting out to see her has been much easier (still a plane flight, but no longer a long drive on top of that).

It’s been so great to spend more time with her, and this place has been wonderful for her. She’s more vibrant, encouraged more to get out of bed and be with the other residents. My brother and sister-in-law get to see her more… the great grand kids even visit. She has a better life.

But of course, Lewy Body Dementia remains an unbeatable monster slowly but surely stealing her away. It’s stunning to see her read things perfectly but have no comprehension of the meaning behind the words she still recognizes, to see her no longer connect with anything while the TV plays in front of her.

At Christmas, I spent a week with her. The first day, she was happy to see me… she knew I was there for her… but she didn’t know who I was. I’ve gotten used to needing to remind her when I arrive, but that day it never kicked in for her. I was just some nice lady there visiting her.

The next day when I walked in, she lit up and said, “My baby is here!” And the rest of the visit she was clear on who I was.

But it was a reminder that her memory and the tenuous links that keep us real to her get weaker every day.

Yesterday I spent the better part of the day with her. She knew I was her daughter, but she no longer can tell you my name, even if she’s looking right at me. But she loves it when I’m there. She holds my hand, rubbing the palm like she’s trying to make some hurt go away.

And she tells her stories. There’s nothing concrete to them on my end anymore. Her brain links 500 confused details together that only make sense to her. But the telling of the tales is all her… big personality, threats to beat people up, deep emotion when something makes her sad.

I’ve talked before about how much I miss my mom even though my mother is still alive. But yesterday… yesterday it gutted me to realize that even when I’m looking right at her, listening to her talk, I miss her desperately. The ache for one more moment with mom… the thing my mother can’t give me anymore… is heartbreaking. 

But then she reaches over and hugs me, kissing my cheek around my mask, and says, “I love you, baby.”

I don’t know how much of that is my mom reaching out or my mother’s muscle memory… the thing she knows to do and say even if she doesn’t understand why anymore.

But it makes my heart swell every time I get to hear it.

Prior posts about mom:

The Story of Mom

An update on Mama Levy