Sep 16, 2008

AAQI: Purple Ribbons of Love

Awareness, recognition, tribute, and memory come in many forms. And having awareness and paying tribute to those who have faced the challenges of Alzheimer's is a special mission.

Ami (rhymes with salami) Simms is just such a person. And Ami's Alzheimer's Art Quilt Initiative is just such a mission.

As someone who is currently watching a loved one face the challenges of Alzheimer's on a daily basis, I now see its relentless assault on the dignity of human life every day of my own life. Living with it, or loving someone who does, is vastly different from that of simply hearing about it, reading about it, or simply viewing it from afar.

When someone you love (in this case my mother) has Alzheimer's, you truly understand why Alzheimer's is known as the silent thief. It not only robs you of someone you know and loved, but also of the happy memories you want (and need) to hold onto.

Instead, everything seems replaced by the endless and unrelenting challenges and decisions of the daily life of the Alzheimer's victim. From the moment, we wake up in the morning, til our last deep breath at night, we have to make constant choices on their behalf.

When to wake them up, how to wake them up, when to feed them, what to feed them, how to change their clothes, what kind of clothes to change them into, how to best help them walk, or sit down, or even on some days, roll over.

You have to make choices and judgments about everything that is, or is not best for them. Are they strong enough to walk today? Can they actually make it safely down the stairs, is it time to stop the stairs (their only true exercise) and have a hospital bed, how do you bring in outside help when those involved vehemently don't want it and definitely don't think that they need it? If the closest nursing facilities are miles and miles away which ends up being easiest on all concerned, and best for all concerned. The list is daily .....and it's endless.

You wake up thinking of all that you, and they, have to do that day. You think of all of the daily activities, to monitoring and treating insulin levels if they are diabetic (as my mom is) to personal hygiene issues, to how to deal with nightmares and daytime illusions and confusions.

My beloved mother began her battle with this relentless disease about three years ago. Like many others, we did not recognize it by its symptoms alone. We noticed only unusual personality changes or aging aberrations of memory. We made and she made, excuses and rationalizations for the symptoms and we all tried to explain it, or laugh it off as stress or tiredness or just part of the aging process. It's so easy to be in denial and so hard to face the facts and deal with the cards we've been dealt.

In time, as those changes became magnified, we realized that the person we knew and loved, was transitioning into someone else. Alzheimer's has already made inroads on the the body with balances and movement issues, with sleeping and not remembering eating issues, with loops of memory that sometimes cycle in 15 minute increments...over and over....all day long.

There are good days, really good days, when the mind is clear...when she wakes up all bright eyed, ready for morning coffee and then challenging days, when she doesn't want to wake up, have her blood sugar tested, or go through the same old things over and over. Days when she wakes up and thinks she's in someone else's' house and just wants to go 'home' and be with her own mother. Days when she doesn't recognize a visiting grandchild or remember what she ate 10 minutes before.

And this is still the 'good stage' of Alzheimer's. My mother knows who she is, who we are ,and she can still carry on delightful and interesting conversations. The harder stage is when they don't know who you are, who they are, can't get up at all, and either rage with endless frustrations of not knowing and not understanding or go into a sleep-state resembling a coma.

It's all hard. Even the easiest stages were hard. The middle stage is harder yet. Someday, they don't know where they are, if they ate, when they ate, what time of day (or night) it is, and get trapped in the darker places of their psyche where they actually realize and accept their diagnose and fear for the days ahead...not only for themselves but for their caregivers.

These later stages can last for years, even decades. Bit by bit Alzheimer's robs its victims and victimizes and martyrs its helpers. Exhaustion on both sides is common, feelings of alienation or disassociation from the rest of the world, as if living in a fragile bubble that could suddenly be burst with something far worse.

This is what we, who care for those who wear the faces of Alzheimer's deal with. It is what they, the Alzheimer's victim, faces. And it's why we all seek to raise awareness, understanding and research monies for this dreadful disease. The one disease that erodes the very foundations of all of our lives and weakens and depletes the joy of our spirits.

Ami Simms of the Alzheimer's Art Quilt Initiative has started a new project The Virtual Quilt Project, where each of us can Create a Patch with the name of a person you know who has/had Alzheimer's. It will link back to her web page, and if you tell her where you put your patch, she will then link back to you.

Our goal for World Alzheimer's Day (September 21) is to raise awareness of the 5.2 million Americans (26.6 million people worldwide) who have this disease. To make this project work, we need as many Virtual Quilt Patches to be created and linked as possible.

Please check Ami's web pages out and make a link for and on your blog. You can make a difference and that difference truly counts.

Alzheimer's Art Quilt Initiative
Fall Post Card Sale
Quilt Auction
The Purple Patch Project
Make A Donation
YOU Can Help
QUILT EXHIBIT Alzheimer's: Forgetting Piece by Piece
Priority: Alzheimer's Quilts


Quiltdivajulie said...

You and your family remain in my prayers...

quiltmom anna said...

You have captured the essence of dealing with ALzheimer's beautifully- It is an eloquent and sensitively written. Thanks for letting others know about Ami's new initiative.

*karendianne. said...

There is so much to know about this disease. I had no idea. Thank you for sharing. And may you be blessed and loved and held up by those around you for all you must do.

In Prayer and with Love, *karendianne./ Living Life at LeeHaven

Anonymous said...

Its good to know more about it as i dont know anyone with this ,Thankyou