After more than 10 long years of suffering, and 12 days of being largely unconscious and not taking food or water, my sweet mother Michele Mousley Weed passed away this morning at about 6:00am PST from complications of Early Onset Alzheimer’s disease. She developed the disease in her late 40’s, lost herself to it piece by piece through her 50’s, and died today at the age of 60.
I keep reading that paragraph over and over, crying.
I was able to fly out last week and spend several days by her bedside. I will always treasure that opportunity.
This picture is the day I said goodbye, which was Sunday. Before catching my flight home, I kept saying my last goodbye and then going back to her bed to kiss her forehead and say goodbye again. I kept saying “how do I just walk away? How do I walk away from her?” It felt so gauche, so crude, to leave her there in that bed so I could get on a plane. I finally gave her one last kiss, then made myself walk out the back door of the care-facility because I knew it would lock behind me and I couldn’t get back in. The urge to run back to her was overwhelming and primal. My sister Jenni followed me out, and she and I just held each other sobbing (she was saying goodbye then too). I still feel it now, that urge. I still somehow regret I didn’t run back to her, though there had to be an end, a separation, at some point.
That moment felt so arbitrary.
As the days continued to pass, it started to feel like she might never go. Denial set in, telling me that she would forever be in that bed in Idaho, receiving morphine every three hours, stirring occasionally, largely peaceful, her body still warm and living, her spirit still inside of her.
And now, she’s gone.
She’s gone at last.
She’s gone decades too soon.
She’s been gone for a long time.
I will forever be grateful to my father, Stewart W. Weed, who stayed by her side until the end. He promised her he would never leave her side when they got the official diagnosis and she was very afraid. And he kept his promise at great cost. He retired early, sold his home, and moved to a remote town he’d never been to in Idaho so he could afford to live with her in a care facility. His health began to fail in the last year due to the extreme stress. He nearly died himself, keeping that promise. His love and devotion, and ability to stand by his word even at incredible sacrifice to himself, is the greatest example I’ve ever seen of true love. It is something I will treasure all my days. It is the example I will follow.
It’s now time for me to walk downstairs and tell my daughters that their grandma, whom they never knew without this horrible disease, has died.
And yes, something has to be done about Alzheimer’s. Something has to be done about this terrible disease. It is vicious–more vicious than most people realize. I had no idea, myself. And we need to realize it. We need to understand that it is about so much more than forgotten names and missed appointments, and repeated stories–that is so much more horrifying than old grandparents saying funny things that make no sense. It is more degrading, heart wrenching and debilitating than one can even imagine, and the number of its victims increases every year. We need to be doing something about it. We need to be finding a cure. I have more to say about this, but I will have to say it another day.
Today, I will be with my tiny family, and I will cry a lot, and will write down memories, and I will help plan a funeral for the best person I’ve ever known.
Love to all.