The beginning of the end

August 23, 2015

Meena & me on Easter from this past year.

Meena & me on Easter from this past year.

They say dementia/Alzheimer’s is worse for the family than the person who is suffering with the disease, but I’m not sure I’m convinced.

My grandmother has dementia. She’s had it for quite some time, but just recently it feels like she fell off the cliff. She has taken a dive and there’s no going back. And you know what, she knows it too.

I visited her in the hospital today with my mom, brother, and grandfather, and, in between talking nonsense, she spoke reality. She’s not an easy dementia patient. She is stubborn and angry and gives the doctors and nurses hell. She screams and curses (both in English and East Boston Italian slang) and downright loathes the help the nurses try to provide her. Plus, she’s in pain. She’s uncomfortable.

But, putting that aside, she knows she’s dying and she knows the state she is in just sucks. It might not be today or tomorrow or even next month, but she knows it’s the beginning of the end. She so much as said it today. She wants to have a conversation and searches for words, but sometimes all that comes out is gibberish and she knows as much.

It’s hard for me to see her like this. Sometimes I feel like I’m having an out of body experience and I say, “Rochelle, just hold it together.” I just love her so much. She’s my grandmother, so of course I do, but she’s so much more than that. Growing up, she was like a second mother to me – that’s how close I felt to her. My sister and I were born on her birthday and she would tell everyone she met that we were her best birthday present. She told this story to friends and strangers. She told it so much, I remember rolling my eyes a few times, but that’s just how proud she was to be our grandmother. And, truth be told, I love that she shared that information with everyone.

The reality of her dementia situation hits me hardest now at nighttime when I’m lying in bed ready to fall asleep. Memories flood my brain: Good memories, happy memories. But it’s then that I long for one more real conversation with her; One more hug where she knows who I am.

Today though, I got my hug.

It was time for me to leave and I told her I had to go.

“Why?” she cried out. “How long will you be gone?”

So I hugged her, and she hugged me back. As we embraced, she started to cry. I rubbed her back and she kissed my arm and she started talking. Much of it was confusing to understand because it’s so hard for her to find the right words, but she knew it was her grandchild holding her. She alluded to the pain and misery she felt but she also said things about her grandchild being here present with her. She didn’t say my name, but I know she knew she was being embraced by someone she loves and who loves her. She knew I was her family. She didn’t say, “I love you,” but her hug and repeated kisses and tears showed me she does.

As I let go, hot tears running down my cheeks, she started rambling about her family.

“My family is stupid,” she kept saying over and over again. We laughed. It was actually the comic relief we needed. I knew she didn’t mean it (or wasn’t talking about me); it’s just how the train of words came out of her mouth.

So I have that memory. I know her dementia will only worsen. Eventually she probably won’t be able to tell the difference between family and care providers, but in that moment, love was present. She knew I was there for her.