Monday, September 03, 2012

What If....My Mother Had Never Gotten Alzheimer's?



All of the "What ifs?" and the "If onlys" can haunt our lives if we let them.

As quilters, and as bloggers, the "What ifs?" can also spur us on to incredible journeys into new directions, or thought-filled posts of contemplation. It can lead us to value, and to create our own personal spaces for contemplation as well as for art. It can lead us into the beauty of nature, or deep into meditative contemplation spaces, or corners, or nooks....or maybe just a table piled with sketch books, pens and colored pencils, or piles of bright fabrics that excite us.

We sit, and we think, and we choose, and we plan. What do we want to make, why do we want to create it, and what fabrics and patterns, and embellishments do we want to add? And sometimes, we are so inspired...we just rush headlong into it .....and never stop to eat, take a deep breathe, or think... as we simply create that which we seem so totally driven to do.

But in real life, as is often the case with quilters in their quilting, the "what ifs" can also paralyze us with indecision, or regrets, or the downward spiral of ones enthusiasm. Sometimes they can so halt our own abilities to even begin a new journey ....or continue on the road of one that just seems too hard..... or as having too many challenges, or hard choices.

And that is why "What if?" is often used as the genesis for contemplative art projects, or as quilting....or art quilting challenges.

When I contemplate the "What ifs" of my own personal life, it is filled with the many challenges and crises faced by my own family members, or my own self whether personally, or when combined with theirs. And as I reflect on that journey, I see so many parallels between the contemplative, or creative journey...and the journey that we all face in our own often far too real, personal lives.

My life has been filled with the most amazingly unbelievable sets of circumstances and occurrences that it fills me, as an artist and as a quilter with a multitude of contemplative 'what ifs.'

This 'what if'...my little 12" x 12" art quilt was created as part of that process. Spurred on by a Quilting Arts magazine challenge but turned into my own personal and contemplative process of looking at my mother, my self, and our shared lives as they intersected on one final, and very long and challenging journey of turning the pages of a memory book of our own lives.

So.. I began the journey into my mother's own descent into her aging years and her health battles that careened her into my own very real and very personal life as an adult.... and it became a journey that forever entwined us together and changed who we both became as mother and daughter, forever.

What if my mother had never been diagnosed with Stage 3b of advanced inflammatory breast cancer in 2002? What if her doctors had not immediately sent her to Seattle for treatment? What if her assigned doctor had not chosen to go on a three week vacation immediately after meeting her? What if living in a Seattle hotel for the month before and after finally getting the appointment to meet him had not been so incredibly hard on my aging parents and ill mother?

What if I had not gone up and brought them home with me and finding a doctor in Salem who could see her immediately? What if my loving touch, caring heart, and persuasive ways had not talked her, and helped her, and guided her gently, step by step into the next 9 months of hard core chemotherapy, a mastectomy, and intense radiation. What if we had not saved her life?

What if we had not saved her life, and she had not lived the significant milestone of being totally cancer free for 5 whole years...only to begin the horrendous symptoms of Alzheimer's Disease?

Yes, it was so amazingly hard to do all of these things. To live with a mother that I had not always gotten along with and to learn to love her with all my heart as I did every thing, every single day of those 9 months to help her, and help my father face their deepest fears and go thoroughly intensely challenging processes?

There are no words to tell you what I would have missed out on. The depth of the bond that grew between the three of us, the trials and the fears we faced together, the way I relied on their courage, and their strength, to allow me to do, and be, all that I needed to learn to do, and be..... for her, for them, for myself, and yes, even for our entire family.

It was huge, and it was hard... but we did it.

And then five years later....when I realized my mother was exhibiting almost unbelievable symptoms of Alzheimer's,not just being dizzy and falling over and over and over, but hallucinating and being paranoid, and having the most awful delusion,s and visions she swore were real. What if.... thing had been faced differently, done differently then?

It threatened her relationship with my father, who loved her with all his heart. It frightened him so much he could barely cope with her, it pushed her, it pushed him, it pushed all of the rest of my family into a battle between denial.... and an acceptance of these horrible "what ifs" that took many years to manifest into a resolution of acceptance ,and understanding.

And always, always, always..it was me who had to be the catalyst, the one who remained understanding, and willing to work through the walls, and the battleground of the disease process. Me, who seemingly had to face hard truths when others only wanted to run from them, to argue with me, yell at me, subconsciously blame me for bringing them out of the easy safety of denial into the hard awakening of needing to help her, help my dad, and yes..even finally into helping me when previously they had seemingly made it all so much harder for me to do what had, and needed to be done.

What if....."What doesn't kill you makes you stronger."

That is the biggest "what if" of all. And strength is not measured in easy gradations of successes. It is a demon filled path of challenges that you simply face up to, battle from moment to moment, day to day, and day by day. And the exorcism of those demons is always the fear within each of us.

What if?

I would not have the mother I have today. She is blind, diabetic, and she is almost completely paralyzed. She is bedridden and has to be carried from bed, to bathroom, to couch, to bathroom and back to bed..over and over, day by day.

As you have read so many time here, I have lived with her, and my father when he was alive, for a combined total of three years out of eight. She is 50 lbs lighter now than in this artistic depiction, for Alzheimer's as many people don't know or don't realize...is a physical disease, it is not a mental disorder. Yes, it ruins the memory but it is not a 'mental illness' like schizophrenia or bipolar depression. The disease process is the creation of physical plaques.....imagine alien looking tangles and clot like particles that fill up the brain, overwhelming its own tissues and creating disconnect all of the neurons that transmit information from the brain to all other parts of our bodies. It has taken away from her 'mind' and taken away from her body. Every single part of her.... with the exception of a few personality traits like humor, that we treasure....but all the rest of her...mentally, and physically..has been affected.

Because of that disconnect, and finally almost all connections, she has lost all of the memories that we shared as we looked at and read all of the photo books I created for her over those eight years, trying to recreate and help her hold onto her life memories for as long as possible. She can barely open her eyes, or talk, or lift a hand to help feed herself. And now, it is my brothers who lift, carry, feed, change, dress, and care for her now as I am no longer physically strong enough to lift, much less carry her by myself.

Yes, she is someone very different now..but so are we.

There is very little now that my mother can even remember. Not what she is even eating now, much less 5 minutes ago, not who is feeding and caring for her now, much less that morning, or last night, or a year ago. We are not even sure if she remembers our father, or her children, or any of her grandchildren. Clarity comes and it goes. Now, it is tiny glimmers of awareness, tiny bits of being awake to eat, or to listen, or to respond to a voice as we speak to her in person, or in my case over the phone to her on her birthday.

Last week, I told her that I loved her and she said "I love you, too, Michele." That was a rare and special gift ..from her to me. This week, we couldn't wake her up to even hear my voice as I wished her a "Happy Birthday" on Saturday. I wished it anyway, and and I told her that I loved her, and how very much she meant to me. Each and every time, I don't know if it's my last chance to say it, her last chance to 'hear' it.

But in this process, for 7 years, she has been a mom, been a mother, been a person, that we never had before. She has been someone we never knew before, and we have all become, and been, and have changed into the strong, and capable, and fear battling people that we have all become....people that most of us never even knew that we were before.

And now, as we love her with all our hearts, we continue to take turns caring for her, in our childhood home, on an island in Alaska, completely by ourselves. She is surrounded by loving hands and giving hearts. Social services may have let her down, depleted medicare funding may have let her down, limited medical resources may have let her down.

But we, her children have battled our own holdings, and our own longings for our own lives with far more freedom to be there for her, no matter what, for as long as we possibly can. We have made it 7 years and are entering our 8th this month. Yes, this might be the end of that journey..we take it day by day, now. It is just that unbelievably hard.

So, today, as I recognize my mother's 87th birthday this past weekend, as I salute her courage to face her own fears, her own demons, her own weaknesses to rise above all of them and just keep on keepin' on, through almost incurable end stage breast cancer... and into 7 long years of Alzheimer's Disease....I honor who she became in that process, and thank her for all that she therefore allowed all of us to become as well.

Happy Birthday, Mom...we all love you, and thank you for being our mother with all of our hearts.

shown above:
"What If My Mother Had Never Gotten Alzheimer's?"

12"x12" art quilt
My own hand dyed cotton fabric with oil stick and rubbing plate embossing; pencil sketching, colored pencils, crayons, shiva oil sticks on cotton fabrics, free cut and free piecing, raw edge applique, and free motion quilting.

And the biggest "What If?" for me as a quilter? It allowed me to experience my own creative journey from traditional quilting into art quilting. It allowed me to face my fears of 'never enough time to breathe, much less to have my own life, into one of finding time for all of the things I want to do, and even more..things I love to do.

It allowed me to become a volunteer, and a quilter for Ami Simm's brigade of quilters for the
Alzheimer's Art Quilt Initiative (AAQI) It gave me the opportunity to find time, to make time, to grow as a person, as a quilter, and as an artist..... in ways that I might never have grown before.


Michele Bilyeu blogs With Heart and Hands as she shares a quilting journey through her life in Salem, Oregon and Douglas, Alaska and all of her AAQI Quilting. Sharing thousands of links to Free Quilt and Quilt Block Patterns and encouraging others to join in the Liberated Quilting Challenge and make or donate small art quilts to the Alzheimer's Art Quilt Initiative (AAQI) Help us change the world, one little quilt at a time!

16 comments:

  1. I often do the what if also.. I lost my dad two years ago next month. I often think what if we had saw the signs earlier.. (((hugs))) I am so glad you have more time with your precious mom...

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  2. you are so very eloquent - thank you for sharing so much of this journey you continue on..I am blessed to know you!

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  3. Anonymous10:32 AM

    You are such an amazing woman, a wonderful daughter and writer and this made me absolutely cry. It is beautiful..the art quilt and the post.

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  4. What if I had never clicked on your blog and missed this post? What a beautiful tribute to your mom and her courage as well as you and your siblings dedication and love. Thank you for this lovely essay. Hugs.

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  5. I can't really relate to what ifs. I believe they steal life and you so embrace life that this is hard for me to see as part of you. I do love the quilt and have even said what if a few times, but I really try to consider what next instead of what if. There are reasons.

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  6. Oh, Michele. What a beautiful and thoughtful post which challenges us all to see the positive sides of the "what ifs" in our own lives. You are truly an inspiration to me.

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  7. Michele,
    You are quite the talent. Not only do you do wonderful quilts but you write so well, too. I enjoyed reading this post and it caused me to stop and think about what we went through caring for my mother before she passed. You have a special strength and it is quite amazing how Alzheimer's effects the whole family, not just the victim. Keep your chin up, you are doing good stuff.

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  8. Reading with tear-filled eyes, Michele, as you take me back in time to my own mother's journey with this ghastly disease. She died on Labor Day, 1995, more peaceful than she had been in months . . . . . God bless you.

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  9. I'm crying, too. My father's descent into AD was so much harder emotionally than my mother's cancer. The loss of the memories, the being caged within your own body, and a body that no longer functions....

    You have been an amazing source of strength for your family, Michele. And as Kathy E mentions, the entire family becomes victim to this disease.

    Shortly before my father's death, he did exactly what your mother did. He said, "I love you, Jenny Claire" -- the first and last coherent words in months. How I appreciated that little miracle! That acknowledgement of my presence.

    My heart goes out to you as you deal with all of the things with which you have been dealing.

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  10. Your courage is amazing as is the love you give your Mom. I'm weeping too. I saw my Mom go from okay, to slower, to wheelchair and bedridden in an amazingly short time before she died from emphysema. Sometimes I think the speed was a blessing, and many times not, I miss her.

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  11. Thank you...that is beautiful.

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  12. *Sniff* What a lovely tribute!

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  13. An eloquent tribute to you & your family with the power of love & commitment. Thank you.

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  14. What an inspiration you are to so many! Your journey paves the way for those of us with less courage and talent, What a joy you are!

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  15. Ah Ms. Michele,
    What a wonderful post written filled with love- I am sorry that I haven't been around much reading blogs these days. I have been busy creating myself-I managed to get 6 couch sized tops made after Aug 3 and most of the 7th one completed. I was creating quilts for three family members for some special events in September including my mother in laws 90th birthday on September 28. It has a minkee back to bring her warmth and softness- She will not know that I made it or even who I am but I know that I was able to create something she could use on her bed. She has not been physically well lately so I wait with bated breath that she might enjoy it for a short while. My husband will be taking it to her next week. Alzheimers is such a difficult disease- it is indeed like losing a loved one by inches.
    I emailed you something and it came back with an auto response computer crashed re : then the title of the piece recycling phenomena so I hope that it did not cause you or your computer any problems.
    Sending you a big cyber hug,
    Warmest regards,
    Anna

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  16. Anonymous8:37 PM

    My mother is now 87, and my 7 sisters and I have lived with her disease for 6 years. At first three of us cared for her, then we hired exceptional women who helped us. We eventually realized none of us could meet her needs and so she entered a nursing home. Four of us visit and care for her constantly, three rarely go. This disease has torn my family apart, it has lead us down a path for which we wish we had a map. We are left with acknowledging that every day with our mother is a blessing, and we pray that when the end occurs, her passing is as peaceful and gentle as her soul. Like the velveteen rabbit, she is worn, and now ragged - but so beautiful and so very real! For all of us who are left trying to make sense of this, trying to make the lives of our parents as special as they are, as valuable as they are, as purposeful as they would want...God bless! s

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