Thursday, June 17, 2010

Mama's Brain Got Tangles....But Mama's Still Inside

As I created this newest little quilt for the Alzheimer's Art Quilt Initiative, I knew it truly needed to reflect what I know and what I feel when I try to find my way through the depths, the tangles, and the overgrown jungles of what has become my mother's battle with Alzheimer's.

I knew that the fabric had to appear busy, layered, and complex. And that I wanted it to appear distressed and jagged. I also knew it needed to be somehow initially constructed, then deconstructed, then reconstructed once again. It also needed to have lots of threads, and stitches and something to represent tangles and growing plaques. But I wanted there to be an underlying sense of warmth and light to show there is still hope... even if it only appears as a metallic netting peeking through the many layers and folds.

The layers of my little quilt are like the layers of my beloved mama....for she is a deep and complicated woman. A woman that took me a very long time to truly get to know, and now is someone who is slowly slipping away....from her life, and from ours.

A bond was forged from my childhood years of being the oldest of five, through all the trials that only a mother and her first and only daughter can share, to the years of my learning about the relationship of mother and child from my own children, and then on to the challenges of helping all of our aging parents.

We bonded through the trials of my mother's diagnosis of Stage 3B of Inflammatory Breast Cancer and a prognosis back then, of approximately 1-3% chance of living for even just 6 months. Traveling down from Alaska where her cancer was too advanced to be treated, to Seattle where doctors never gave her one single treatment in 3 weeks of time, and finally south to Salem to live with us for the next 9 months. We faced her absolute refusal to go through any of the necessary actually having all three of them...aggressive chemotherapy, a mastectomy, and radiation... with grace, good humor, and steadfast determination to simply take one day at a time.

Side by side, her hand in mine, we created a new persona for my old fear-filled mother. I lent her my energy, my strength, and my faith when she was too weak to feel any of her own. My 'new' mama never threw up, she never cried, she was never truly afraid, and she never gave up. She had faith in me and in my father, and our ability to help her to what she needed to do, and be who she needed to be. This new mama was strong and this new mama was unbelievably amazing.

My new mama made it back home to Alaska after treatment and to the cancer milestone of five years of survival and then she began to change again. Her behaviors were changing, her memories were changing and her wild imaginings were changing, too. She lost her sense of balance in all ways, her sense of space, time, and boundaries began to disappear, and bit by bit, an alien invader began to spread and take her over, once again. My amazing, surviving all the odds, mother... now had Alzheimer's.

And somewhere in all of that changing, my mother knew it, too. And just as we had faced the cancer openly, we finally talked about 'it'......honestly and clearly. With courage and determination, we found an opening in time for light and clarity in her jungle. She was able to express what she wanted, how she wished it could be for her as she got worse, and how I could help through the days, the weeks, and the years ahead. We talked about how it was changing her, and what she did, and did not like, about those changes.

And we made up our minds, that somehow....if we couldn't beat the Alzheimer's like we'd beat the cancer... then at least we could find our way through it all...holding on to one another and dealing with hope and faith combined. We actually made a pact between us...just she and I, to stay connected no matter how hard it was for her, for as long as she possibly could. And I promised her, with all my heart, to use all of my gifts, to keep the pact and her alive.

And somehow, for a very long while, we did it again. We made a difference and learned to push 'it' away and to hold 'it' back. Each and every time I came up from Oregon to Alaska to care for her....sometimes for one month, sometimes for two or three or five....we pushed the jungle back and we managed to pull my mother out. It was and it is, agonizingly hard....and it is only getting harder and harder.

There are days when she cannot speak. Days when she cannot sit up, or hold a spoon. Days when she loses more than just total control of all of her bodily functions and cannot even stay upright or lucid and days when she doesn't know who we even are. But somehow, when it seems that all is lost, I can still find a way to reach inside...through all the plaques and tangles...because I know that my dear mama is still somewhere in there, and she still needs and wants me to try.

And yes, somewhere, somehow, my mother must remember our pact..because my mother does still try. She will try with me, when she cannot with anyone else. She tries so hard, each and every time, to find us through her tangles. I can feel her seeking this path, then that one, and no...maybe this one will work...looking for the hidden path in the deep dark and overgrow jungle of confusion. She can't find the thought, the words, the way, the path to find her way back out again. So, she sits staring, trying to think, trying to know, and to understand and instead....flailing and failing, inside.

I reach out to her through all of the layers. I feel my way through the jungle and the angles and the tangles. I send love and hope and faith. I just tell her that every thing's ok and always, always... that I love her so much! I search and I search, I reach and I reach, I push and I pull....

And out of that somewhere, my mama speaks:

"Thank you, Michele" she says. "I love you, too."

My mama's brain got tangles...but mama's still inside.