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Caring at Caring

When I came to work here, I knew I'd have challenges and growth opportunities, that I'd do design work and that what I was making would help people. But there was something significant I never predicted.

I didn't realize my heartstrings would be tugged quite so often.

We're about to release (tonight) a product that will help people who are caring for loved ones with Alzheimer's. I've learned a lot about the disease in the process of designing this interface - and for the first time I have had to take into account the fact that my designs will evoke strong emotions in people. I mean, design often elicits delight, frustration, or in extremely bad (not mine) cases, cursing. :> But I've never had one of my designs bring someone to tears before. Until I worked at Caring.

We're doing usability testing on the alzheimer's product right now. I spent the entire day today doing nothing but talking to people who are caring for husbands and wives and mothers and fathers with Alzheimer's. It's both heartwarming and heartwrenching to hear their stories, to hear the emotion in their voices as they describe what they're going through, what they worry about, and what they hope for. These are such different people, each approaching the challenges of life in their own unique way.

Alzheimer's is a horrible, horrible disease. Like ALS, it's hopeless, degenerative. Unlike ALS, it wreaks emotional havoc on the people who surround the afflicted person. And there are few things that make you love humanity more than hearing the woman who has been caring for her husband (of 56 years) with alzheimer's for eight years say "I'm happy to do anything you need as long as it'll help other people."

I'm so proud to be part of this effort, and I'm so proud to be human. We've got bad apples, but we also have so many beautiful, shining souls out there.

Comments

( 7 comments — Leave a comment )
johno
Oct. 5th, 2010 02:15 am (UTC)
Alzheimer is a horrid disease, it doesn't kill the body. It kills the mind, leaving a relatively healthy body behind.



Edited at 2010-10-05 02:20 am (UTC)
shodoshan
Oct. 5th, 2010 02:36 am (UTC)
At first, that's true.

However, I have learned that as the Alzheimer's spreads, it does shut down the body. First they have trouble walking, then they lose all motor skills, and eventually the brain stops being able to send signals to the lungs and the heart.

It's really awful, and I hope we find a cure soon. *sadness*
johno
Oct. 5th, 2010 08:10 am (UTC)
Physically my Mom was given a decade or two, as she was relatively young (63) when diagnosed and in good health.

If anything, moving to the ALF improved her health even more.

She was back to the 70s for long term memory, 5 minutes for short term memory, remembered me, my uncle & aunt, but not my cousins or wife.

Looking back, it was a blessing that she died of a brain aneurysm, rather then the slow loss of everything (and there were examples at the ALF), including even the brain's inability to operated the body.
shodoshan
Oct. 6th, 2010 04:36 am (UTC)
WOW. I'm so sorry you went through that. And I"m sorry she did, too.

*big hugs*
ribbin
Oct. 5th, 2010 02:46 am (UTC)
Thank you for doing this. My great aunt passed away from Parkinson's.

There are few things that suck quite as much as when your "third grandmother" turns to you and says "and what's your name, young man?"

So... thanks.
shodoshan
Oct. 6th, 2010 04:39 am (UTC)
My grandmother died of cancer, but it had reached her brain. In the end, I was the only person she forgot.

So, I know what that feels like. *hugs* Rest assured, everything I read tells me it has nothing to do with how much they loved you.

Until there's a cure for cancer, ALS, Alzheimer's and Parkinsons... *hugs*
ravulory
Apr. 15th, 2011 04:16 am (UTC)
What a great resource!

( 7 comments — Leave a comment )