Tuesday, September 25, 2012

Alzheimer's Illustrated: My Own Heartbreak to Hope

 In a life filled with challenges, with so much heartbreak...and yes, still filled with so much hope...it was such a heart touching experience to finally view for myself, the amazing  Alzheimer's Illustrated: From Heartbreak to Hope  traveling exhibit of the Alzheimer's Art Quilt Initiative (AAQI)

AIH2H as I like to personally call it,  continued its five-year journey across the United States with a stop at Portland, Oregon's NW Quilting Expo.


This amazing traveling exhibit is a series of black walls, creating a walking maze, which consists of fifty-four small format art quilts (9" x 12") which all illustrate in a variety of ways and thematic emphasis, the impact that Alzhimer's Disease has had on the artists who created them.

These small art quilts are hanging among 182 "Name Quilts," each 6 inches wide and 7 feet tall, which carry the names of more than 10,000 individuals who have/had Alzheimer's or a related dementia. The names of these loved ones, written on fabric patches by family members and friends, honor the 5.4 million Americans in the United States struggling with Alzheimer's disease.

As a volunteer for AAQI, with **13 family member names among the "Name Quilts"  and two of my own small format art quilts among the 54 art quilts, I felt so personally connected to both this cause, and to this exhibit. Perhaps, that opinion is based on my having two of my own little small format art quilts on display, and the pride that I felt also viewing the two quilts from the members of my AAQI Liberated Quilting Challenge group, as well as the overall pride I feel from ALL of the quilts that my challenge group members have created and donated to this amazing cause!  

There is a depth, and a breadth, and a far reaching scope, to this exhibit that simply surpasses making beautiful quilts in an artistic fashion for any other kind of art challenge. So, no matter how creative the other challenge exhibits might have been there..and I visited each and every single one...and loved them....still, there was no comparison for viewing, and feeling, the hearts and the souls of true art quilters who create for a genuine cause of true purpose. There is simply no comparison!

As I wandered through the maze shaped exhibit, I found myself both slowing down to truly feel the raw emotions the quilts evoked, and then speeding up to not have to feel them so painfully and personally, each and every step of the way. You have to allow yourself to feel, but keep from going into the sheer tragedy of this disease and what it has done to your loved ones, yourself, and the dynamics of the entire family. And trust me, this is something that cannot be explained, but only felt through the tears, and the ripped out and torn seams of the inner heart.

My first 'go through' was a quick one. We were early, and there were few visitors as I headed to this exhibit first. But the lovely and gracious docent, Sue, who was just plain 'great Scot' awesome at what she does, and the magic she contributed there, immediately connected with us, listened with an open heart to my own story, and before long, there was a group gathered around me... to 'over hear' and 'over heart' my story.

As I looked at the faces of those viewing all of the quilts, one by one, I knew that each, and every person there had their own story... and my own heart opened to bursting.... so that I had to pull back just a bit, in order to do what I had to do... and both feel, yet document this exhibit for all eternity within my own spirit. But here, at Expo, in this exhibit, I wanted....and needed....to chronicle the journey through this exhibit.

 But I could not help but mention that as I personally realized...somehow, for the very first time, I realized.....that my own two quilts in this exhibit were begun in May of 2010.....and that I had sewn them with a broken, and still healing from surgery, wrist.

I had just spent months in Douglas (Island) Alaska, caring for my mother (then in her 6th year of advanced Alzheimer's) and my father (who had two silent heart attacks during this period and was beginning vascular dementia) and myself, who slipped on the worst black ice in Juneau-Douglas's history, and not only broken my wrist in three places...but slammed three wrist bones into my forearm.

I had immediate surgery, the implantation of a titanium plate and 10 screws, and I just kept on going. Because, that is what Alzheimer's Disease forces us to do. It takes so very much away from us, and all we can do is cope with its ravages, day by day, bit by bit, until it all becomes a painful blur and we almost forget how incredibly challenging it is.  There is not even time to feel sorry for yourself when all the focus must be on those you are helping and the horrors that happen amidst family members through all of the stage of denial, and grief....to acceptance.

I had cared from my parents for several months, cooking, cleaning, giving shots and pills, and doing laundry with just one hand and a bit of the other arm's elbow...before I returned home to Oregon in mid-March and other family members came in to take over.

Without any time for physical therapy, I simply quilted to get my arm working again. Ami Simms had already challenged all of us to submit quilts for potential inclusion in the newest traveling exhibit and at first, I thought...

"How could I possibly sew anything? I only have one good hand and wrist?"

But then I realized how truly ridiculous that was! I had already worked every minute of every single day with that one hand and one arm, doing things that others wouldn't even have thought of trying. And now, at least, I was out of the stiff velcro'ed 'cast' since surgery and I was supposed to use this hand as much as I could to get it to working again.  My AAQI quilts were the result of that therapy.  From mid March to December, I made and donated 10 quilts and these were among those 10.

That they had been made 'then' and with my wrist, hands, and actually the entire arm in this state...was an aha moment for me during this exhibit.    How could I possibly have not realized this before? That is how the mind focuses on surviving and doing, and not running and trying to escape the horrors of all it all. And by that I mean my mom and the Alzheimer's Disease, and my dad preparing for his death in mid-August.  I needed to be present for them, as I do now, for my brother and my sister-in-law and their challenges, so I just simply do what I need to do and don't focus on how hard it all is!
What this has all taught me..the doing, the being, and now the finally, really, really 'seeing' was huge for me. Not only was I not alone on this winding maze of a path, but I was a survivor who was making it to the end of its journey.....one way or another. But I was making it.

So, whether I am in Alaska, helping my family, or in Oregon helping my family, or now, in Oregon helping my Alaskan family....I'm still somehow doing it. And right now in Oregon, I am the only one helping them in many ways, as it has proved too hard for everyone else to find the time, much less deal with the constant emotional drain. I hate driving on 8 lane freeways, I hate getting lost over and over in big cities as I try to bring my SIL to visit my brother in his fourth month of hospitalization. It is hard visiting my almost 97 year old mother-in-law for two hours a day for the past 8 months..especially now when she has been admitted to hospice.  But I just do it!

It is just another challenging maze of discovery, just another series of art quilts in the making in my own life's journey!

As I looked at this Hearbreak to Hope display, than awareness made me feel so strong, so proud, and so capable. I had made them..these two little art quilts..during one of the singlest, hardest, most painful, years of my life....and I had done it with one strong hand.....and one healing hand.

This maze, this walking through the journey of awareness, has dark walls, but there were so many spots of bright color, of clarity, of awareness, understandings, and sometimes even of joy.

We all see and face many, many walls...but some hold up symbols of our progress and our strengths, as well.

Here is my first quilt on my own first wall...

And below, my second quilt on my second wall....

And there is always, always hope...here..a box of kleenex, a place to leave comments, a sticker that announces that you saw the quilts.....

.....and oh, yes...some chairs to sit down and have a rest. And then...there are more quilts to make, more hearts to touch, and let's face it...more money to raise for Alzheimer's research!  There IS hope!

My AAQI small format art quilts that are included in this exhibit.

Michele Bilyeu:
Among the 47 quilts that I have donated so far, are two of my quilts that I feel so very blessed to have on display as part of this traveling exhibit. They are:

#5211 - Mama's Brain Got Tangles...but Mama's Still Inside

Michele M. Bilyeu
Salem, OR USA

Artist's Statement: Like my mother's memory, this art quilt consists of many layers, tangles, and threads...with spots of clarity and light hidden amidst the colorful (but often chaotic) surface layer.

Dedication: For my mother who continually pushes through the advancing layers and tangles of Alzheimer's with infinite grace and humor.

#6399 - The Alzheimer's Prayer
Michele Bilyeu
Salem, OR USA

Artist Statement: I grieve for the loss of my father, and honor his strength, determination, and fortitude in helping my mother face the challenges of her Alzheimer's. He lovingly cared for her, helped her to retell those memories she still retained, and brought forth the bits and pieces of her fragmented life. With this quilt and my own prayers, I pray that other care givers will have the same love and devotion that he had and care for their patients and loved ones, as the people they truly are...and not just who they seem to have become.

In honor and memory of my father, a loving care giver, and with the deepest love for my mother who is now in her fifth year of Alzheimer's. In spite of being blind, diabetic, and unable to walk, she still reaches out her heart to us with love.

**the 13 purple name strips of my own family members include both parents, and 11 aunts and uncles with all kinds of Alzheimer's and Dementias   (did not include the two family members by marriage, and not DNA)

And check out my Liberated Quilting Challenge Group Members' Julie Sefton, and Jean-Sophie Wood's contributions to this exhibit on my other blog..just click on: 

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!

Wednesday, September 19, 2012

Yes, I Still Sew and Quilt !

Today, we pick up my SIL in Beaverton and bring her with us as we visit my brother at Vibra Specialty Hospital in Portland. Now, that he is fully out of his many months long coma, and we know he has his mental faculties..at least verbally... it is even more important that we visit and spend time talking and sharing memories so we can all better judge his needs during this long process of bringing him fully back to us, again.

So, we are actually planning three separate visits this week alone, and that is a lot of driving, visiting, and fitting ins to all of our schedules. But somehow we manage..... and somehow in spite of this event filled life of mine..

I still find time to sew....two sets of potholders....

for my Mid-Valley Quilt Guild ...completely made of scraps from two little quilts that I started at my last guild meeting for  the tubular pieced 'Streak of Lightning' quilts we all made during one day long 'Bolt to Bed' charity quilting day. The quilts are made in a variety of colors and fabrics..I grabbed enough fabrics for these two sets, shown below.  These little ones will go to even littler ones at the Salem Hospital NICU ward for covering preemie isolettes and then go home with the babies, when they get to go home with their parents!

The potholders get made by the thousands..literally...only just not all by me ;) and the profits go towards funding of charitable guild projects. Last year the profits went to the Copper Creek Correctional Institution for the funding of quilting supplies for the women's quilting group, there.

The two little child sized comfort quilts are now all pinned to batts and backs and at the ready to be quilted stage. They should have been finished by now...I've had two weeks since this photo... but real life does get in my way!

And because I visit my almost 97 year old MIL almost every single day, I make lots of Adult Bibs..for her, (for my mom in Alaska, too) and for the nicest 96 year old gentleman at my MIL's small adult care home who wears bibs at every meal to keep his sweater vests clean and looking sharp. He used to love to play golf so a golf themed one for him..biggie sized images of golf bags on this one, as he has limited vision.

And I made and registered and mailed in three more AAQI quilts..this one....from Laurel Burch bright Christmas fabrics..well gift wrapped gifts at least ..so gift fabric!

11,819 - Bright Heart of Many Blessings

and this one......

one of my ever so love to make dragonfly art quilts....

10,680 - Ethereal

and this one....little improvisational strips and bits from Empress's Garden line of fabrics from someone or other...plus three little pearls so symbolize the pearls of wisdom that the flowers love to whisper in my ear..

11,372 - At Peace In My Garden

and this one....old shirtings fabric and some vintage mother of pearl buttons.....

11,682 - The Shirt Off Their Backs

and finally! I got the binding on this baby quilt and hung it on the fence to be kissed by the sun and  for its official blessing and by the sunflowers...and the ....

...... the chickens.......they're not real good kissers,
but they sure give sweet little peck, peck, pecks on the hand!

Meet Georgette (eating from my hand, here), Penelope, Matilda, and Gigi....(And did you ever notice? When DH made my arbor arch and I added the little prayer flags..side bar, upper right...Praying for a Miracle....Gigi and Georgette, who were BRAND new additions to the coop then, stood in respectful attention! How cute were they?

PS: Try taking a photo of your own hand as four chickens come up to eat out of it!....staccato pecking that does not hurt...but does surprise one a bit...I keep telling them "Don't bite the hand that feeds you!"

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Now, that's what I have been up to....at home, at least..... with all my fun. I don't show the last three days of shrubbery pruning, or the huge, huge, huge mess I created while doing that. But I filled a big garden cart and three wheelbarrows to overflowing! I never did figure out how to take a photo of myself doing that, however.

And this weekend..... I am planning on going up to Portland's Quilt Expo with my lovely 'once virtual only' quilting friend, "Marathon Quilting Cher" from Portland....who became a real life friend a number of years ago, when we met up with "Quilting and Life in General, Doni from the coast" ......in Sisters and found out we hit if off like a charm pack and howled with laughter all the way through multiple Sisters Outdoor Quilt Show, over multiple summers, together.

Cher and I didn't meet up this past summer, so we are long due for a visit and a major quilt show together..and trust me..Quilt Expo is a major one. I'm greasing up my feet for some aisle tromping and applying bandages in anticipation!

Not only will we see all of the kazillion quilts there, but we get to see two of my own quilts on display in a special exhibit for the Alzheimer's Art Quilt Initiative (AAQI

My two little quilts in the are seeing the world as part of the Alzheimer's Illustrated: From Heartbreak to Hope exhibit. Traveling all over the US from 2012 through 2015, this AAQI traveling exhibit consists of fifty-four small format art quilts, none larger than 9" x 12", are hung amidst 182 "Name Quilts, " each 6 inches wide and 7 feet tall, carrying the names of more than 10,000 individuals who have/had Alzheimer's or a related dementia. The names of loved ones, written on the on the purple fabric patches by family members and friends, to honor the 5.4 million Americans in the United States living with Alzheimer's.

As my own life has been so incredibly touched and altered forever by Alzheimer's Disease and related Dementias, finally getting to see the exhibit and my own little quilts hanging among them, is sure to be a life altering experience, for me as well! I'm bringing my hankie, trust me!!

Until then.....when I will have so much to share, show and say......I thought I would share all of the other many projects I have been working on. You didn't really think that I would let even one day in the midst of absolute chaos ever go without some kind of art or quilting therapy....
......did you? ;) ?

my links:
Make a Scrappy Potholder
Making an Adult Bib
Free Babies, Childrens Quilt Patterns

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!

Friday, September 14, 2012

2012 Update on Praying for a Miracle

If you follow my blog, then you know that I have been asking for positive thoughts and prayers for my brother and sister in law of Eagle River, Alaska.

But it has been so incredibly challenging, that I have not given a full update since I was first in Anchorage in June with my brother and sister-in-law and the rest of our family and then in Seattle in July as my brother was medvaced south to Harborview Medical Center, there.

As many have written and asked for an update and continue to offer thoughts and prayers on our behalf, I have added bits and pieces to the original post but decided to write a new entry with more details. In my heart, I believe that even the simplest thoughts of anyone reading this will impact our own spiritual energies, and connection with all of our ability to love and all manifestation of miracles. And yes, thank you SO very much for all of that!

Recap and update:
My brother, Douglas Savikko,of Eagle River, Alaska, was rushed to the hospital after many months of being ill and missing constant work in his practice as a doctor, with some kind of re-occuring case of the 'flu'. He was rushed to the ER on June 8 and diagnosed with acute Pneumonia, which turned into MRSA, and then an auto immune massive brain inflammation and seizures.

He spent all of June in Alaska Providence Hospital in Anchorage, Alaska fighting for his life, on a ventilator, and with constant brain inflammation and really bad brain seizures. We were told he would most likely die and I rushed up and stayed with family at his bedside for 9 days until we knew he would live.

During this time, he was given such massive doses of sedatives that they admitted it was five times greater than any amount they had ever given any other patient in the hospital and should have been enough to sedate an elephant...a very large elephant, yet he continued to fight to come out of the sedation.

To save his life, and any to prevent additional brain damage, they felt they had to administer these extraordinarily high doses of extremely strong sedatives to put him into a deliberate coma and did so until quite literally, they ran out of both of the sedatives they were using....even after using all of the ones from all of the hospitals, in Anchorage and asking for more from the 'lower 48' to be express mailed up.

Finally, with no sign of real improvement, they admitted they did not understand what was happening to him, and thought it best to medevac him south to Seattle where they hoped doctors with more neurological experience in these cases might better help him.

That day, they medvac'ed him out on a small Lear Jet..still in a coma... to Seattle's Harborview Hospital. This took about 6 hrs of flying time and massive amounts of equipment and several paramedic/nurses monitoring every level of sedative, antibiotics and the ventilator that was completely breathing for him at that time.

I flew back from Anchorage, to Salem Oregon where I now live, and then repacked my bags and was driven up to Seattle to be with him, there, as well. I am blessed to be able to share my own healing gifts with others and knew in my heart that I needed to be with him as much as I possibly could.

My brother then spent all of July in Seattle, Washington with his life no longer in jeopardy, but his diagnosis as well as any real prognosis uncertain. But the seizures had had stopped and his deep, deep sedation was lifted slightly, bit by bit.

I moved to Seattle by his third day there and lived in a hotel for an entire week, visiting his up to four times a day and also visiting his wife, Rebecca , who had flow down in a commercial jet as my brother was medevaced in a medical transport jet. Rebecca, who is in end stage kidney failure and on the kidney transplant list, slipped on her very first day in Seattle, in the hospital, and broke her pelvis. My brother was on the third floor and my SIL on the second and I spend my week walking 16-42 blocks a day to and from the hospital for multiple visits with both of them..all day and evening long.

My brother has now spent all of the month of August, and September, at Vibra Medical Center, in Portland, Oregon and now has been moved in the Hillsboro Rehabilitation Center in Hillboro, Oregon.  We used a medical transport from Seattle to Portland so as to maintain all of his oxygen assisted breathing through his tracheotomy, and keep him stable and free of the brain seizures. And a regular van transport ambulance to get him to both hospitals/rehab centers in Oregon.

 He had his trach tube removed at Vibra and it has healed beautifully. He can sit up with a two person assist, be moved into a wheelchair, and is beginning PT to learn to reuse his body after being bed ridden for almost 4 1/2 months.

December Update:  My brother, Douglas Savikko of Eagle River, Alaska has been blessed by a miracle. He has survived being in a coma for many, many months, on a ventilator for longer than average useage, had a trach/tracheostomy for several months, come out of his coma in his coma, learned to mouth words, then speak with a capped trach, then learned to speak, to use his arms, then his legs, and is now walking with a walker and being released to his daughter's home to rejoin his wife, who is staying now in Beaverton, Oregon.

He has most of, if not all of his faculties, and is working to regain memory gaps from the long confine, the horrendous seizures and brain inflammation or encephalitis. Doug is walking, talking, living, remembering proof that prayer and postive thinking, hard, hard work and the love and devotion of family, can work miracles.  He will continue to live and recuperate their as his wife, Becky continues to seek her own medical care.

His wife, my SIL, Becky, moved to Beaverton, Oregon to be nearer to him in Portland, and is staying with family, there. On her first few days there, she fell and broke her pelvis..on top of recuperating from the broken and surgically repaired hip she underwent in Seattle's Harborview Hospital.

Becky now has end stage kidney disease, a healing hip and a healing pelvis..and yes, she also has diagnosed Osteoporosis.

I drive from Salem, Oregon to Beaverton for visits with my brother and my sister-in-law at least once a week, but often twice, now as we also have other family members in our crises that need our attention, as well. Our visit days are 8 to 12 hours long ...with 4.5 being driving on freeways and Interstates...depending on I-5 and I-205 gridlock patterns. But it is all worth it to have been part of the incredible progress that I have seen during all of these months of this experience and my traveling to three states and three hospitals to be part of his healing progress. As each doctor in each hospital has told me..."This has actually been very amazing progress. We cannot believe how much better he has gotten, he has far surpassed anything that we ever thought he was even capable of, here!"
You better believe it!

Original posting follows, not using updated terms etc.

Doug went from first opening his eyes and smiling at me in Seattle at Harborview Hospital to actually recognizing me and smiling and by the end of the next month in Portland to mouthing words which I then attempted...fairly well, I might say...to lip read. When I first visited him on my own, he asked me "How are Becky and the kids?" So, then I knew..he was back and he was in there!!!

After our visits to Doug, we take my SIL, Becky, out to lunch, and run errands that she needs to run. She has truly appreciated and enjoyed this time as she has been able to spend hours at a time with Doug, and to shop for clothing and other necessary items as she only came down with a small suitcase and a carry-on bag (she had only a few hours to pack and get on a plane) and all of her clothing was summery. Last week, we also brought her to a hair salon where she had her hair shampoo'ed and cut and styled. That alone, made her feel 200% better!

And the very best of all, even though my brother still has oxygen assist with a tracheotomy, he had the vent capped and was able to talk!!! Now, talking at that point was like listening to someone with a mouthful of marbles and wind blowing through them. We caught bits and pieces. But what we did hear made us all laugh.

Some some of his first new words were: "I want some iced tea."

Right now, with the venting and the resulting confusion in his throat between trachea and esophagus, he cannot have anything...not even ice chips... by mouth. But we are hearing through the medical grapevine that he hasn't given up. He asks every single person who enters the room for a drink. He gets his mouth sponged out..and I don't think it is with iced tea!!

Wednesday, was a really amazing day. I had remembered seeing a news story on Christopher Reeves many years ago where they talked about his swallowing air to aid the voice box in vibrating with a trach and creating words better. So, I just keep reminding Doug of that, and he is much more easy to understand now.

We actually had conversations and his use of vocabulary and language usage were amazing.

Becky told Doug, that my husband and I pick her up and bring her over to see him. Doug turned to my husband said: "I hope you don't let them interfere with your egress."

Egress??? I said My goodness you have a good vocabulary for someone who spent many months in a coma and is on a vented tracheotomy!

I mean who talks with that level of vocabulary usage in real life? Dang, if all of this blessed healing energy has made him smarter than me I am in for a rough time. I'm supposed to be the older and wiser sister ;) And up to now, I've been able to talk, talk, talk at him and he hasn't been able to say anything back. Things are obviously changing....ha!!

I absolutely loved it and frankly, we couldn't believe that after all of this, and so much horrendous potential brain damage, we at least know that he is coming back to us with his verbal abilities and communication skills intact!

He does have pneumonia again, and that will delay the gradual progress of getting him free of needing the trach and oxygen assist. But once we do, we are on the lookout for a rehabilitation nursing home with a strong physical therapy program to get his ability to use his limbs and sit, stand, and walk again.

Bit by bit, he is getting better. And in spite of her own incredible challenges, Becky is doing really well for a woman who is so very, very sick. End stage kidney disease is a horrible thing but she walks with a walker like a pro and almost keeps up with me and we are having fun spending time with her and keeping her spirits up during all of this. She is now on kidney transplant lists in both Oregon and Washington and sees a new nephrologist next week to see when she begins to send monthly blood sample for testing and then eventually the 6 month program of wiping out her immune system for hopeful kidney donation.

Keep the good thoughts and prayers coming. This will be a year long, or even more, process for all of us. But as I told Becky, today. I don't give up on helping people and I don't give up on believing that miracles are not only possible..... but happening for us all the time!

Sometimes miracles are not the saving of a life, but the relief of constant pain, or the gift of being able to breathe even with end stage cystic fibrosis, or the gift of faith and belief that we are all more than we think we are or are capable of being.

Sharing these gifts is not something I can delegate, or refuse...as I truly believe this is my own personal spiritual journey in this life time. I just keep trying to help others and to make a difference in the world..the best that I can.

And often that is through the making and the giving away of quilts that I put my love and healing energies quite literally into each and every stitch. I deeply appreciate your support by the purchase of all of my donated quilts and art quilts to my cherished charitable causes.

When I say these are all true gifts "from my hands and with my heart" it is not an exaggeration. Many literally consider these to be 'healing quilts' because of all of the love and my own personal healing energies that I transfer into each and every single one of them! Thank you so very much to all of you who purchased my small format art quilts...please continue to purchase them from
the Alzheimer's Art Quilt Initiative (AAQI)

My Life: Crazy Strings A Minute
This link has been mysteriously appearing on other's blogs that I read..you know how google can do things like that with a mind of her own!

So, I clicked and reread it. And yep...different people, different problems..but me sewing and quilting and helping others. Deep down inside I always knew I was on what the Buddhists call 'The Short Path'...I'm apparently given so many challenges to learn, to grow, to spiritually progress faster.....yeesh..no wonder it doesn't throw me as hard as it might someone else...I really do live like this most if not all of the time!

I wouldn't mind if the Divine could slow me down..just a bit, please? Blessings for those gifts I have been given, and for the ability to help those that I can. But a short nap if not, some sleep would sure be nice :)

PS:And also? Could you please help us find a cure for Alzheimer's?.........I love AAQI and I love making and donating my little quilts but goodness, I'd love it even more if we never, ever needed to earn research moneies every again, because a permanent cure was found!!!  Our mother is now in her 8th year of advanced Alzheimer's and it has profoundly impacted our entire family. My brothers and sister in laws continue to care for her in our family home in Douglas, Alaska as I help Doug and Becky now in Oregon.  Please support my primary cause and buy my little quilts to earn money for A.D. research. All profits go directly from their sale at AAQI to funding at major research university working on treatments and/or a cure for this horrible disease.

Latest Update: 2013

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!

Tuesday, September 11, 2012


www.with-heart-and-hands.com  blogs at http://with-heart-and-hands.blogspot.com/

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!

What Arose From a Day of Infamy?

As I think back to the horrible roots of this day...9-11....I think back to the horrors, the loss, the grief and the mourning of a nation.

But I also remember, the goodness of those lives we lost, the heroes from that incredible day of tragedy.....those amazing and courageous people who rose above and beyond themselves to help others..... the patriotism, and the amazing sense of unity that manifested so much caring, and so much good in the world. Goodness in direction polarization of so much ill will and so much fear and hatred.

So, I look at myself, next..as we all need to do....and take note of how and why quilting is a healing art in my own life. And all of these days of record and note, I do what I usually do...I quilt for a cause. 9-11 has become a day of remembrance of community, and patriotism in the deepest unifying sense of the word. So, while I might not always be working on a patriotic quilt for donation to wounded soldiers, I am working on community quilting..whether by myself, or in a group...and whatever I am making gets donated within that community of purpose.

When I first began blogging in the fall of 2006, my quilting life centered around community quilting. I sewed with a local band of quilters that was formed after a two day marathon of sewing quilts for the survivors of Hurricane Katrina.

200 quilts banded together with donated fabrics, patterns, threads and the most patriotic sense of community support that I have ever experienced. We made 200 quilts in those two days and we sewed on our bindings and labels and boxed them off for shipment in donated shipping trucks for transport to Louisiana, Georgia, and other hurricane ravaged states.

It was so uplifting, so inspirational and just plain SO much fun, that we found a local church that gave us the use of a huge quilting space and began to meet every Monday for 12 hours. I would stay there from 9 am until 7 pm and literally sewed every minute making a quilt a week for continued donation.

When Hurricane Rita quickly followed Katrina..we just kept sewing. And when the weather calmed down,we sewed for Inter-faith charities, for babies in hospitals, for families in need, for Habitat for Humanity etc. etc.

By the following year, I was also sewing for 5 or 6 hours on Tuesdays, too. And I did that for another 6 months until we decided Mondays were enough and we could just sew at home for the other 6 days of the week.

After a few years of this community quilting, 9-11 hit all of us with a blast that changed a lot of us forever. I began my Patriotic sewing period where I literally made dozens and dozens of quilts and bags to give away to various causes.

My community spirit grew with all of this nurturing and feeding and so, I also joined my local quilt guild. There we have leftover and donated fabrics also available and between all of us, we donate probably 50-100 quilts a month to various groups, as well as hundreds of pillowcases for children in foster care, and lots and lots and lots of potholders to raise funds for our charitable causes.

So, what arose from that terrible day for me?


Community pride, community giving, community quilting.

It brings all of the layers of ourselves and our lives together, softens our spirits with caring and reaching out to others, and it binds us all together as one. And that goodness of humanity, can only grow and grow and grow....until it almost seems to sprout goodness out of nowhere and everywhere!

shown above;
my beloved little Keira, before she passed and the 'morsbags' I make and give away ..to friends, and to people I've never met who just seem to need an environmentally friendly cloth bag

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!
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!

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!