Monday, June 10, 2013

Alzheimer's Isn't the Problem -- Our Ignorance Is

A couple of tweets came in on my Twitter feed this afternoon that provided links to stories about Alzheimer's disease. Reading them, I felt slammed back against my chair. One brought back a memory and the other took my breath away with the horror of one family's death-by-dementia.
I consider both of these pieces essential reads because they point to how little support is out there AFTER ALL THESE YEARS. Sadly, most people take the time to read the stories -- that good 'ol "Alzheimer recoil" -- let alone realize how serious the situation is. One day, this could be your mother, your Odds are.
I am compelled to write about this here because 140 characters on Twitter does not allow enough of a response, nor should one come quickly and tweetly. I used this phrase, "I stopped breathing when I read this", when I retweeted one of the articles because there wasn't room for anything more and someone tweeted back that she liked my exaggeration.
Having lived through the experience of caring for someone with Alzheimer's, having watched him suffer and die from the effects of the disease, I can tell you there's very little need to exaggerate anything.
But I hate knowing that what is negative, what is perceived as exaggeration continues to be what we know about Alzheimer's and dementia. We need to change the perception of AD, we need to get rid of the stigma if all of us are to survive this growing health issue. But we are pitifully slow to let go of fear and misconceptions.

So here is my 140 word response to the article in the National Post about someone finally seeing that sending dementia patients to hospital freaks them out ( It reminded me of the experience my father had in the fall of 2006 as a "distressed dementia patient".
A skittish nurse filling in on the locked unit called the ambulance to take my father to the hospital because he'd fallen again. He'd been doing these "soft falls" all day and was not hurting himself yet against my orders NOT to send him, she did. I was at an appointment so it was hour later when I found out and made my way to the hospital to deal with her over-reaction.
By the time I arrived, Dad was so agitated, he was hanging half off the bed in the ER, tangled up in the railing and the sheet. He was alone and scared. I could see the relief in his eyes when I said, "Dad, I'm here."
There was no one around. No nurses, no doctors, no other patients. If I'd been any later, my father might have fallen and broken something for real.
When the doctor finally came around to tell me my father's X-ray was clear, he added that my father was over-medicated by the nursing home but that was it. No compassion, no suggestions, no help -- and this doctor had written a book about Alzheimer's disease.
Doctors see the disease and how it manifests; caregivers see the person and how they are affected. The two are profoundly incompatible.

And here is my response to the tweeted essay written by Jim Crawford, a man whose family was killed by Alzheimer's. Yes, killed. That is not an exaggeration. Neither is saying again: This piece takes my breath away. Please take the time to read it.
Join in me recognizing how brave Jim Crawford is to put his story into words and then out into the world. My father died of "natural causes" yet I still mourn the reasons for his suffering and death; I don't know how deeply into his personal resources Jim will have to dive in order to keep going. I hope sharing his story, being an advocate, will help him -- and create the changes that will prevent this kind of tragedy from happening to another family.
This is a story about not being able to cope, of there being so few resources for families that this man's family was destroyed by having the disease -- not by the bullets -- should not be overlooked or shrugged off as an exaggeration.
It's a wake-up call.
Everything is. Every story, every study, every song, every poem. We are so focused on finding a cure that we aren't figuring out how to live with this disease. Again, the fact rises up like an ugly monster: Billions of dollars have been spent on research and trials for drugs to "cure" Alzheimer's and we are still no closer to finding one that even slows the progression of the disease, let alone cures it.
We have to learn -- fast -- how to live with this disease, how to care for people with AD and support the care-givers because the miracle cure isn't going to happen. That Toronto hospital study is one step, one good idea but it's long overdue.

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