Saturday, May 01, 2010

Transitioning Between the Polarities: For AAQI


Bid now: Alzheimer's Art Quilt Initiative May 1-10 Quilt Auction
Read below: My personal Alzheimer's Challenge With My Beloved Mother:

Whether I am home in Oregon, or traveling to Alaska to care for my mother, both she and I are in a state of constant transitioning.

Neither of us wakes up in the morning knowing where we are, neither of us knows what the day will bring, and neither of us knows what kinds of challenges we might face that day.

I might be called back to Alaska with only a day's notice, I might not go back up for several months. What we do know, is that we face each and every day, together...no matter where either of us is, or either of us is doing, at the time. This is the bond of a child and her mother. It is the very heart of pure relationship, without the need for physicality, or matter.

She is my mother and I am her daughter. Yet my mother no longer consistently remembers what the word 'daughter' means. But, when she hears my voice, she still knows that it is me. Instantly, she knows it is me.

"Is this my favorite daughter?" she asks, even though she has forgotten what a daughter is. It is our constant joke, and I repeat it with every single phone call. "Your very, most favorite daughter, in the whole, entire world." I tell her. And we always laugh. I am one of five children, but the only daughter. And somehow, she still gets the joke of it all.

My mother no longer remembers who her grandchildren are, she doesn't necessarily recognize any of their names, nor does she ever seem to remember which of her children they 'belong' to. Once in a while, even gets her sons mixed up...after all there are four of them... and only one of me. She forgets who is married to who, or who has what children, or who might have her grandchildren. There's too many names, too many relationships, too many confusions. She has stopped trying to remember at all now.

My mother no long remembers whose house she is in, or even why she is living there. Most of the time, she thinks she is in her sister's house. A sister who never even visited us in Alaska and who has been in an almost comatose stage of advanced Alzheimer's in a nursing home in Tennessee for a decade. A sister, like her other sisters and a brother, who all faced the ravages of Alzheimer's.

My mother doesn't understand how old she is, when her birthday is, even if it was just the day before we ask her about it. She won't be able to remember the party, or who was there or even if she had cake.

My mother believes that her own mother is still alive, a mother she cared for in 1974 for the final 3 months of her life, and whom she held the hand of, as she passed. She asks for her, about her, and wants us to check on her, on a fairly constant basis. She misses her and often, in her world, her mama is still alive and still very real.

My mother is trapped, and barely moves, but she is not static. Her body no longer wants to walk, it no longer recognizes signals of hunger, or elimination, it doesn't know the different between day or night. But it is filled with inner movement. She spins almost constantly inside. She tells us that her brain hurts, that it is always busy and dizzy. She can't make it stay still she tells me. She scrambles to find the connections, the word, the meaning, the sense of it all. Yet there are times, when it is absolutely stuck, completely void, and often not even in our reality.

I call it having one foot in this world, and one in the other. She hears voices and sees people that we do not hear, and cannot see. It doesn't matter that she is legally blind, because she sees them in another dimension of space, and time, built from longing and remembrance and projection into the heavenly future she longs for.

Her other world still has, or perhaps always had, all of the things, the people, and the memories that she longs for and misses. She asks about her deceased sisters or brothers, her very best friends who all passed away before her, and her beloved long gone mother. She is constantly checking, checking, checking on her mother.

"Are you all right, mama?" she asks. Just as I do, when I hear her rustling in the night, or trying to get up from a chair when her legs cannot lift her much less carry her across the room. "Are you all right, mama? I hear myself saying out loud even in my own sleep, here in Oregon.

My mother still can talk, she has regained her ability to feed herself, and she has the most amazing sense of humor and ability to make us laugh. She is considered by all of us who know her, and those who just meet her, to be a true delight. She requires almost everything, and there are times when we are all exhausted by the effort, but her zany sense of humor and her constant sense of gratitude, are all we ever need to "keep on, keeping on."

When I give her a shot of insulin..."Thank you" she tells me. "That didn't even hurt." When we change and wipe up her messes "Thank you for helping me." she says "What would I do without so much help?"

When I tell her a silly joke using repetitive phrasing I know she can recognize, she laughs and laughs and repeats parts of it to let me know she 'got it'. "You make me feel better." she tells me and it's all I need to hear, and all I need to know.

When I look at Alzheimer's Disease through my mothers brain...I see an amazing jungle of nothingness and everythingness ...the void and the place of complete manifestation, in one. It is like the world of creation and the world of illusion, standing in lines and waves of energy, always moving, always creating yet somehow completely still, none the less.

When I feel her brain, I feel the stripes of a zebra, the zebra in the tangle wilds of the jungle and the flatness of the African plains. The zebra, that is the power animal that represents seeing through the illusion of this life and this lifetime. Things seem to line up as real (to her) or not real (to me), present (to her) or past (to me), black (and therefore dark) or white (and filled with clarity and light). But often, they are exactly the opposite to her.

Her dead mama is real to her, her grandchildren coming through the house to visit, are not. 1974 might be real to her, but 2010 doesn't even sound like a real year. She doesn't understand what 2010 means or what it represents at all. When I repeat 2010, 2010. 2010..it stops being real to me, as well. It is silly in an odd way..just as silly to me as it is silly to her.

And my mama's mind, her little zebras in the tangled jungle, spin...just as the colors of their stripes spin. So we never know, which day will be a good one....where she knows who we are, and that she is hungry,or recognizes us by the sounds we make in the room. We cannot tell what day might end up being a 'bad' one, where she doesn't remember where she is, who is there, or is able to understand anything that we say to her, at all.

On those days, when things are dark and gloomy, and the illusions fill the room with their power, she lays without moving like a little lump under her covers, not responding, not asking for anything, not knowing what is happening. We feed her, we clean and change her, we give her insulin and her Alzheimer's medications, but she doesn't respond. She is suddenly gone from this world and into another. But I ask myself, which is real and which is the illusion.....is it my world, or is it hers?

Then suddenly, the spinning begins again, she makes a twist and a turn, and she is our mother, again. It's as if she, and I, and the rest of our world, never went away. Nothing sad or bad happened in that in between place...not one day, not one month, not even one visit and the next.

I appear out of nowhere and she just accepts that I am there. "Hi, Michele" she says with her voice that still knows me, seeking me out of the darkness with her eyes that no longer can see. I might be in her bedroom, the living room, or I might be talking to her over the telephone. Space and time and distance have no relevance at all.

I am Michele, a name she still knows, and she is still my little sweet mama. I am her daughter...even if she has forgotten what a daughter is. And we are together again.

She is in Alaska and I am in Oregon...but I know her and she knows me, and the polarity is no longer a separation between us. She spins, and I spin, and our stripes change from day to day. But we are always together, bonded as one, and we continue to spin and to transition.

"Are you all right, mama?" she/I ask. And if the other is there, in whatever reality exists, then I/she/we are both okay.

shown above:
My AAQI art 9" x 12" art quilt "Transitioning Between the Polarities" now up at auction, beginning today. It is accompanied by my 4" x 6" co-coordinating art card "Alzheimer's: It's More than Black and White." These quilts, and many more, may be bid on for a period of 10 days.

The beginning bid is a $30 donation for AAQI, towards Alzheimer's research. Alzheimer's Art Quilt Initiative May 1-10 Quilt Auction If the amount is already over $30, that means someone has upped the bid, and you need to offer more for your bid ;)

Please support Ami Simms and the amazing group of volunteers who help her, as well as those of us who donate our quilts, by bidding on, or buying a quilt today. There are now 26 new quilts up for bidding and many more are continue to be up for immediate sale.

And make a quilt for us through our group Liberated Quilters Challenge. See all of our quilts made and sent off to date. Liberated Challenge Blog

17 comments:

  1. What a beautiful post. It brings tears to my eyes. Thank you for the sweet comment on my blog. As quilters with a passion to help others, we will always be friends. Hugs

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  2. Thank you for this post... it does so clearly help me to understand what must be going through the heart/mind of those sticken with this terrible disease... and the heart/minds of their caretakers. Your love for you Mom shines through every word.

    Kat

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  3. Thank you for your post today. I have a very good friend suffering from this same disease. Hang in there....you are an amazing daughter!

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  4. Dear Michele,
    this post meant a great deal to me - on a personal level. My father has been institutionalized for over a year now with this disease and it has taken its toll on our family. You write so beautifully and lovingly. I wish that I could find a way to get the anger out of my own system so that I could be more efficient and helpful.
    You are an exceptional daughter - God bless you!

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  5. Michele - that's got to be one of the most moving posts I've ever read. Beautifully written.

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  6. Anonymous7:59 AM

    Your post really touched me...I just lost my mom last month from Alzheimers, and our experience was much like yours. Thank you for putting it into words.

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  7. You've given us another eye-opening post.

    I recently bought a Halloween quilt from the AAQI site that I'd had my eye on for a couple of months. I may not get my liberated quilt made for the challenge but at least I've contributed somehow!

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  8. Michele,
    You have captured what it feels like to have a parent who has developed Alzheimers- It is a world of polarities - which one is real is sometimes difficult to discern. My mother in law continues to be a person of two worlds - with limited ways to communicate in our real world. Perhaps she is like your mother, longing for the other one.
    It is a touching moving post dear friend- Thanks for being brave enough to write it.
    Hugs,
    Anna

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  9. I greatly thank you for your post. My dear aunt suffered with this same disease for over 12 years before she passed. She was my favorite aunt.

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  10. Michelle, thank you for this wonderfully written post. My family is just starting to understand what lies ahead for us with my grandfather and this disease.

    I pray that we all find the strength, love, patience and understanding to deal with it as you have.

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  11. Beautiful post. My Grandmother along with seven of her ten siblings were taken to the other side by Alzheimer's. Not a day goes by that I don't think about her. Her last two living sisters are dealing with the disease now. It is hard to deal with but somehow Alzheimers families survive and we become stronger, more passionate in our journey through life.

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  12. Anonymous5:58 AM

    Beautiful and moving. For those of us with Alzheimers in our families, you give us hope that just maybe we can cope with this.Your art quilts are amazing.

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  13. Anonymous8:13 AM

    Beautiful thoughts, especially on Mom's Day. We are farther in our journey, but would like to thank you for lovely words for someone going through this chapter of our lives. Especially loved the "zebra" analogy, very appropriate.

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  14. All I can say is that tears are rolling down my face.

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  15. Your post is so heartfelt and moving...thank you for giving of your heart as you do. I am buying one, and also you know I am working on a small quilt too!! Hope you are having a quiet, peaceful week.

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  16. Your story is our story - my mother in law is in an extended care facility. she called last night (with staff help) and said somebody had to come and pick her up - she wants to go home to live there. She always asks about her mothers and her father who passed away in 1996 and 1959. she wonders why nobody told her they had died and why she didn't go to their funerals. She calls my husband - the only one of four sons who sees her on a very regular basis by her brother's name and calls the other sons "the other one" and "the other one and "isn't there another one?" she wants to go live with her daughter but doesn't remember that her daughter was here less than a week ago and took her out to lunch for Mother's day." It's hard for my husband when she tells him "You're supposed to be taking care of me - you're a bad son" We live close - we have her home often for dinners - we visit and we answer the questions about where are the others and why they live where they do ...the grandchildren are forgotten... it's such a sad story but one shared by many. That's wonderful of you to make quilts for this cause!

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  17. Hi Sheila! (your settings are noreply blogger and mine are stuck there too, so answering here!)

    Thank you so very much for commenting and sharing your story with all of us. And you are so right, it is our story...all of our stories. There are differences between how Alzheimer's may present, or families may experience or how the challenges affect us...yet they are all the same. I know the dark and the sad and the loss. I know the day will come when my mother may not know who I am or chastise me, as well. I know it will get harder. So, each day I do have...whether it is when I am physically with her, or not...I just take it for what it is. It's too hard otherwise. We have our parents in their home on Douglas Island near Juneau, Alaska. It only makes it physically harder on all of us. Not better for her, not better for us, really. We are happy to do it out of love, but there are times we still wish we had more help or even a nursing home with an open space...'just in case' we are all collapsing with exhaustion at once. We don't so we deal. Your husband is doing the very, very best that he can...and so are you. And as hard as it may be to say or see....his siblings too. Some people have nothing or very little to give for many reasons. I'd like to think if they had it, they'd give it. In the long run, you will have more at the end and they will have less...on the inside where you know you tried. Blessings to all of you. I add you to my heartstrings of understanding and compassion shared.

    with heart and hands,
    Michele

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