What Alzheimer's takes

A lot of you know that my grandmother--my dad's mom, who we always called Mamama--has Alzheimer's. A few years ago, when she was still mostly there, we moved her out of her house to an apartment in a senior living center. Then last Valentine's Day she fell and broke her hip. She was in the hospital, then a recovery center, and is now in a nursing home especially for people with Alzheimer's. She has a huge window. Her caregivers are good. We visit her regularly.

But she's already gone.

She's not Mamama anymore. Layer by layer she's left us. Her opinions, her thoughts, her desires. She used to be so vain about so many things, and now she doesn't even notice. She still knows our names but not how we're related to each other. She looks at the picture of her with her maid of honor at her wedding and remembers that day, but doesn't remember what the last meal she ate was.

I don't know what to make of it.

Friend and reader Kristen told me that her husband is struggling because his grandfather is gone, too. "My husband's grandpa doesn't remember him. They were as close as could be and now after spending the day together he has no clue who he is."

They were as close as could be. Now he's gone.

Kristen asked me how she could help her husband, what she could say that wouldn't make it worse. I wish I knew. I think a hug would be the best thing she could do. The only thing she can really do. How can he be here but not?

I don't know what to make of it.

My friend Meggin lost her mom to Alzheimer's before her mother died. My friend Gina is losing her mom, piece by piece, as I write this. My uncle cries in his car when he leaves a visit with Mamama. She's not his mom anymore.

It is grueling. It is desperate. It is so crushing.

I was sent a children's book about Alzheimer's to review, My New Granny by Elisabeth Steinkellner. It's a sweet little book, about how Granny used to be, and how she is now, and reducing expectations and showing love even when the person isn't the same anymore. I think it would be good for little kids who have noticed some changes in someone with Alzheimer's. I love that someone wrote a children's book about Alzheimer's. But it almost seemed too rosy for me. I still don't know how to explain to my children who Mamama WAS. What she liked, and how she made us feel, and what was great about her and how she drove us nuts. How she was my role model of a working mother when I was little. How she took an enormous chance on my grandfather and they made the kind of love people are lucky to have.

When we moved Mamama out of her house she/we weeded out a lot of her jewelry, and she gave me a pair of earrings. When I wore them and got compliments I'd say, "They were my grandmother's, and she gave them to me. It's nice that I get to have them and she's still with us." But that's not true anymore.

She's not with us. But she's still here.

I don't know what to make of it.



(I'm wearing purple on Friday, September 21 for Alzheimer's Action Day. If you see someone wearing purple today, please give them a hug.)