Expect the unexpected. I've heard that advice given for love, parenting, and careers. I offer it now for the Alzheimer's journey too. This disease affects over 5 million people, and yet often there are no real answers for questions along the way.
A little over a year ago, I was writing personal notes to all my aunts and uncles, encouraging them to come visit my mom. A few of them are good about coming every few weeks or stepping up when we send out one of our random cries for help. Others maybe pop in once a year... some have never set foot in mom's house since her diagnosis 7 years ago. The odds are a little different because she's 1 of 10 kids, but I know lots of families like ours who struggle with relatives who turn a blind eye to the needs and sufferings of Alzheimer's disease.
So I wrote letters encouraging visits because I was sure - I was so sure - that we were running out of time. She'd been on hospice for a year, things were slowing down, she was totally bed ridden and mostly unresponsive. I didn't think she'd make it to Christmas, and I was sure that in February she was celebrating her last birthday.
Well, Christmas just came and went. And the New Year approaches. Mom just got - and beat - a cold. She's still eating. She's still breathing. She'll be on hospice for 2 years come February, and I don't think she's going anywhere after all. Expect the unexpected.
I'm not sure how someone can live so long doing so little, can live so long eating so little. But they can. She has little brain activity left, but sometimes she'll mumble... sometimes she'll even say words, like the other day when she cried "Ow" and snapped at me to "Stop it!" when I was gently cleaning out her fingernails. Reactions and words that mean things don't come out of her mouth anymore, but suddenly there they were. Expect the unexpected.
I do think there is still some of her inside. Sometimes she'll raise her eyebrows in reaction to something I said. Sometimes she'll mumble the name of her favorite brother. Sometimes she'll ask for her dad. Sometimes her hands reach out for something in front of her or above her that I can't see - but maybe she can. Sometimes Harvey will climb up on her lap and I can see her fingers try to grasp him in a hug. So there must still be a will to live. That is where I struggle with the unknown and the wondering because I don't understand what her purpose is any longer, and I don't understand what her soul still feels she needs to accomplish in this life.
She has imparted so much love. She has gifted the world with beautiful artwork. She has bred two generations of smart, talented, driven people. She has a legacy.
But she's not letting go yet. So I keep trying. I give her hugs and kisses. I tell her "I love you" everyday. I light candles and put essential oils in her diffuser. I play music and watch tv shows in bed with her. I tell her about the happenings of the day. I massage her feet. I knit her a lap blanket for Christmas and put chapstick in her stocking and bought her some vegan cream lotion to rub into her ghostly pale hands. I put a little Christmas tree in her room and plugged it in everyday around the holidays.
The holidays were tough for me this year. I wanted to do everything in my power to make it perfect and fun and magical for my 3 year old at the peak of his "BELIEVING". But as the day came closer and closer I struggled internally, knowing that my mom would be down the hall, a hundred feet away, asleep in her room, still breathing but unknowing, and unaware of the joy and the giggles of her grandson in her own home, around her very own Christmas tree.
I miss sharing the holidays with her because she made them magical. I managed to get out the tree and the stockings this year. But I couldn't unpack the tubs upon tubs of decorations and knickknacks she so happily collected over the years to fill her house to the brim with festive cheer. I couldn't do it without her. My dad helped me bring her out to the living room with the hoyer lift to sit on the couch while we decorated the tree and watched White Christmas, but she was totally, silently unaware of any of it. I baked a lot this year, like she used to do, but I so desperately miss doing it with her, and she didn't enjoy any of the treats. The grief hit me hard in December. It's always there, waiting just under the surface, nearly everyday. It comes out random places, random times. Expect the unexpected.
I did post my sadness one day on Facebook. I try to advocate for Alzheimer's a lot on my Facebook account, but I try not to make it a frequent sob story. However, last week, in a response to another article about missing your mom at the holidays, I did share that while I was trying my best to make Christmas magical, I was dreading Christmas morning. Because I can still see the memory of her, in her pajamas, sitting on the couch, drinking her coffee, coffee cake or cinnamon rolls in the oven, her kids so happily unwrapping the presents that she meticulously put together so well that you can't even find the tape or seams. I wanted that on Christmas morning. I wanted it to be her. But this year it was me. With the coffee, baking the cinnamon rolls, anxiously watching the gleeful child. I shared that my only consolation as I deeply miss her is that Christmas is still my favorite day, because of her, and I never took one single year or tradition for granted while I had her. I really didn't.
In response to my sharing the above on social media, elves showed up at our house. I went to the gym on the morning of Christmas Eve. When I came home, our outside evergreen, which had been bare when I left, was covered with ornaments. It took my breath away. I got out of my car and walked up to it, stunned, looking with blinking eyes, wondering how this could be? For a moment, I felt true Christmas magic. When I went inside to ask if anyone else saw what I was seeing, Harvey told me "Elves decorated our tree!" Expect the unexpected.
Someone saw me, honored my grief, gifted us some Christmas spirit, and gave us more decorations, knowing that I couldn't bring it upon myself to use all my mom's decorations this year. So it was magic. And that gift they gave brightened my day, made my Christmas more special, and got me through the hard part. It's the kind of thing my mom would have done for someone else...