Sunday, June 6, 2010

Disappearing Nine Patch for ALS Challenge

I've been lax lately and apologize for not getting you fun and frivolous or exquisite and breathtaking or informative and awe inspiring blogs lately. My brain has been in a fog and as you all know I've become a caretaker.

My husband, a longsuffering patient man is heading for saint hood. No, he isn't dying!  At the moment he has regained most of his strength and has returned to work so now I'm more of a chauffer than caretaker. Hasn't quite got the strength back to do his own driving. Which is really difficult for both of us since 1. He doesn't have his hands on the wheel and is in control. 2. He sits in the back and mumbles directions or says things like 'there's a car mumble mumble'.... I freak out and yell, "What! Where?" And he replies, "There's one of those crazy cars that look like a box on wheels and is painted that glow in the dark green...."  And did I mention 3. He's not driving, I am.

Okay, maybe watchdog is a good term for what I do these days. Poor man. I am always watching for signs of problems. Remember that first day when you were totally responsible for your newborn baby and you would watch to see if it was breathing or poke him to make him move while he was sleeping? Yep, it is kind of like that. Keeping this man healthy is like herding baby chicks. They run in all directions darting out of control at a whim and sometimes the whole group switches direction like a little military unit and takes off for parts unknown. That's my husband's health. One day he's strong, standing and taking a few steps. Another day he doesn't even want to eat. His legs swell no matter what we do and his breathing always scares pulmonologists. This weekend we realize how quickly his health can turn. Just an hour or two watching a friend repair our water heater exhausted and dehydrated him. Of course he was sitting in the Florida heat in a stuffy garage without a bottle of water and too much pride or too little sense to ask for one. So he's recovering. More than you wanted to know.

Well, to keep my mind off of health issues (while I watch him every second) I began making a little quilt for Kathy Thompson's ALS Quilt Challenge: Hopes and Dreams Quilt Challenge. I'm running out of time. I think she's ending it in July. None of the terms I use for other people's quilts apply to this one. Not exquisite, awe inspiring, but definitely utilitarian and cheerful.

Most of all cheerful was what I was going for. I see first hand every day what a struggle it is to make his fingers move to button a button. I see the way he gracefully accepts that he needs help pulling up his pants and getting his shoes on. He's given up cooking, slicing and dicing. He doesn't have the strength to control the knife. He sits in a wheelchair or a lift chair and it is a rare time when he is standing and looking down on me when I am not beside him propping him up. He knows it will only get worse. There are simple things he can no longer do and breathe -- he cannot lean back or lay down without a breathing machine. Things we just take for granted. There is no cure. There is nothing to ease the muscle cramps and  random flashes of pain. There is a terrible future. He knows there is 100 percent mortality from this disease. And so does everyone who gets this diagnosis. So, I wanted a workhorse quilt that would deliver comfort and cheer. The hope aspect of this quilt is included in the prayers said over it while it was being constructed.

Anyway, now I need to figure out how to quilt it -- suggestions are welcome. And then bind it and ship it off to Kathy to give to someone who is quickly dying from this disease.

An elaborate quilt that would take months or a year to make would never do because most people die within a year to six years of diagnosis. That would be a lifetime! They go from a weakened grip or stumble in February to totally immobile, unable to speak or swallow by November and dead by December. Some last longer. But the decline for most is so rapid that Medicare has an expedited service for ALS patients. By the time normal red tape is cut through, they no longer need that service but have moved on to the next plateau. And our military, our fighting men and women have such a higher rate of developing this disease. No one knows why. But it is a fact.

My husband has a rare slow progressing form of ALS and it is inherited. He's lost several cousins, aunts, uncles and yes even a brother to this disease. We were assured at the time of his brother's death and our marriage that it wasn't a problem. Have kids, live your life.... We did. Now our two sons have a 50-50 chance of getting this disease. So we have a really strong reason to want a cure NOW!

If anyone is so moved to make a quilt for the challenge. Thank you. And if you want to donate funds to aid research, I beg of you. Please contact the ALS Association in your region and give so that we can find a cure. Since this is a neuromuscular disease, a cure for ALS could open the doors to cures for Parkinsons Disease, Muscular Dystrophy, and Alzheimers Disease just to name a few. By the way Ami's auction is going on right now -- until the 10th. She has some lovely quilts to auction to benefit Alzheimer Disease research. I've written a blog about my own brush with Alzheimer's as a remembrance to my father. It seems to have been well received. If you haven't read it, click on this link.

Well, I didn't mean to end this as a plea for funds for the ALS Association or Alzheimer's. It was just meant to introduce you to my lowly little quilt. And I wanted to promise that I will do better at posting to the blog. Thanks for all of your support and kind words and prayers and friendship.... If the disease continues unabated, it is only going to get worse. But that's a place I don't want to visit right now.

8 comments:

Sarah E. said...

I love your quilt, your efforts, and your spirits! I have lupus (same family as MS, RA, etc.), my mother has Alzheimer's; the pain of watching the one you love crumble and knowing there's nothing really that you can do to stop it is beyond expression. You have a rare talent for continuing-on-in-the-face-of, and the quilt is wonderful! Heartiest congratulations and warmest regards from Texas!

Penny said...

Just want to say that I admire your spirit - and his. What a heavy load so many carry and if you didn't know, you'd never guess. I hope he is comfortable and wish you both well. I'll keep you in my prayers.

Marti said...

Here is a cheer for the cheerleader: HOORAY!

Mrs Moen said...

I love the quilt; so cheery and colourful and sure to brighten up someone's day!
What amazes me is how rapidly we humans ajust to the changes in our lives and how soon things become "normal". We do what we have to do when we have to do it and move on one step and day at the time - and you're doing an amazing job!
Don't you worry about your blog Dawn, we'll be right here.

juanita said...

You are both so courageous! Good for you for being able to share your thoughts and feelings on this blog and raise our awareness.
Hugs from Ontario.

Lisa said...

This quilt will be a comfort and cheer to someone. You might want to do a slightly wiggly crosshatch quilting on it. Start from one corner and aim to the opposite corner with a little wiggle inbetween. Not sure if I am discribing it right.

Wishing you comfort and cheer today!

Virginia Greaves said...

It is a lovely quilt Dawn. And you have such a strong spirit. You're my hero! I'm sending prayers of strength to you & your DH.

Rayna said...

Do I need to comment? I know,to a great extent, what you are dealing with. hugs for strength.
R.