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 treatments....to 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.

16 comments:

  1. Michele, this is the most eloquent description of Alzheimer I have ever read. It made me weepy.

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  2. Michele, I found your blog because a blogger friend (on the other side of the world to me) sent me a link and said "Lizzie, I thought of you, please go read this..." You see, my beloved mother has Alzheimer's too..
    Your post made me cry, but then I do that when I can see where my mum will be in a few years! She lives at home with my dad only an hour away from me. I see her every week at least once, usually twice and I know I'm luckier than most. I'm 60 in two weeks and I still have them both, but it really doesn't make it any easier does it?
    Your words echo what I feel when I see her start to struggle, when I see the confusion in her eyes, when we talk and she says 'who's that' about her brothers...? When I see the fear as she trys to grasp something in her mind it breaks my heart. I too am the eldest of four and the only daughter and I know the special place in her heart that I occupy, I know that no matter what, I will always have that place in her heart and I'm grateful for that.
    Stay strong..
    Lizzie
    xxx

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  3. Michele, both your tributes to your mama are beautiful. Thank you for sharing them.

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  4. Such a beautiful tribute.

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  5. That moved me to tears. What a beautiful bond you share with your mother. She is so blessed to have you and you to have her. Thank you for sharing.

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  6. You have a gift for expression that touches us all. Your spiritual and physical strength amaze me, along with your serenity. Your parents are blessed to have you for their daughter.

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  7. thank you, Michelle, thank you, thank you. You make me want to be a better daughter.

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  8. Michele, this is the most wonderful description I have ever read. It has moved me to tears. You are an amazingly strong and loving daughter. God blessed you both. I loved my mama so and lost her 3 years ago. Still an open wound. Your tributes and contributions to the Alzheimer's Art Quilt Initiative are amazing. Thank you for sharing.

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  9. Michele, this is the most wonderful description I have ever read. It has moved me to tears. You are an amazingly strong and loving daughter. God blessed you both. I loved my mama so and lost her 3 years ago. Still an open wound. Your tributes and contributions to the Alzheimer's Art Quilt Initiative are amazing. Thank you for sharing.

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  10. beautifully written. I can't even imagine...

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  11. Beautiful tribute to your mom and your TLC of her. And I love the quilt.

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  12. What a beautiful post, Michelle. I'll be forever grateful for the last coherent expression from Laddie in which he said he loved me. Your Alzheimer's quilt, the quote, and your post are such a tender expression of love.

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  13. Blessings to you, your mother, and your father. Not an easy row to hoe, but y'all are doing it with grace.

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  14. This was the most beautiful expression of love I've read in a long time. My mom was developing this horrible disease but succombed to kidney disease before the alzheimer's was too advanced. In retrospect I think we were lucky - she knew us all up to the end and until the last 2 days, when she was heavily drugged with pain meds, was pretty clear and coherent.

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  15. Michele,
    A poignant piece filled with love for your beloved Mother. It is such a challenging illness and even where there seems to be so little hope you have found ways to express the way you sustain the dignity and love you have for your loved one.
    A beautiful quilt and piece by a special and loving lady.
    Hugs,
    Anna

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  16. Michele, that was a beautiful tribute to your dear mother, as is the exquisite little quilt. My father has Alzheimers.

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Michele Bilyeu blogs "With Heart and Hands" as she journeys between Douglas, Alaska and Salem, Oregon.