The photo above was taken on a Friday afternoon. Mom’s dear friend Ruby (left) and I took Mom to lunch at a nearby steakhouse. When we got out of the car, Mom looked up at the sky, enthralled by the bright blue of the summer sky and the brilliance of the clouds.
“Look!” she cried. “Can you see them? They’re all up there.”
She sees “them” often, our loved ones, looking down at us and smiling. She doesn’t understand why they can’t come down from Heaven–“That just doesn’t make sense,” she says–but she’s always glad to see them.
It was such a moment of unadulterated joy that, as Ruby and I both moved in to hug her, I had to take a photo. This is the Mom the way I want to remember her.
This joy is what I want for her.
But Mom has dementia (Alzheimer’s with Lewy bodies), and as anyone who’s gone this road with a loved one knows, you have to take these moments when you can. Because dementia is a thief–of memory, of self, of happiness. You watch your loved one struggle with fear, anxiety, and sometimes anger as they navigate a strange and frightening world that no longer follows the rules of time and space. Little by little, the person you loved disappears, and each new loss is another grief. There’s a reason dementia is called The Long Goodbye.
On the Global Deterioration Scale (can you imagine a more demoralizing name?), which divides each of the seven stages into decimals, Mom recently scored at 5.6: moderately severe cognitive decline. Advanced cognitive decline is 5.8. We first noticed the signs in 2018, so we’re seven years down this road.
There is so much Mom has forgotten–and yet, she still loves to rumba and do a little push-pull swing. She loves to sing her favorite hymns, her high, clear voice rising for the parts she remembers and dropping to a soft approximation when she forgets the words. We sing “You Are My Sunshine” to each other, and “Somewhere Over the Rainbow,” and her favorite snippet from “Anything You Can Do, I Can Do Better,” from Annie Get Your Gun. She still hates strawberries and pinto beans, and she still loves mashed potatoes and gravy (and ice cream!).
She is still Ruthanne.
If you’re one of the many people who knew and loved Mom, or if you’re on this journey with a loved one of your own, I invite you to check back at this site for updates on her current condition and our “adventures,” stories from her life, and what I’ve learned (and am learning) about strategies, tips, and resources for caregivers.