Do you ever think about how you would handle those bad things that might happen down the road?
Most of us aspire to be Lance Armstrong or Robin Roberts if ever faced with a terrible diagnosis. You find the best treatments available and you fight with all your might.
Most of us would want to be caregivers like Sandra Day O'Connor or Dana Reeve if a spouse were ever slapped with a terrible diagnosis.
ALS puts a big wrench in all of those brave plans for the hypothetical terrible diagnosis. Oh, you have to be very brave, but ALS isn't a fair fight. It is like a bad situation on fast forward, and you're surrounded by people and institutions that are stuck in slow motion.
First you seek those best treatments available. The first day or two of research are incredible. They are outrageous. We're stuck in 1939. There's nothing. Nada. The best ALS centers in the world don't have a concrete plan that you can try to win the fight. Once you figure out that grim reality, ALS forces patients and caregivers to skip Kubler-Ross and get on with some challenging caregiving to make the best of the upcoming downhill slide.
Next you start to deal with it. You feel like pioneers in everything you do. Time takes on new dimensions. The healthcare delivery system doesn't know how to deliver at the speeds you need. With every decision you make, it's like you're throwing the ball five yards behind the receiver by the time healthcare delivery delivers. You do physically demanding work with a healthcare system that does not cooperate. At the same time you watch a loved one slipping away in a decline that is far too fast and somehow predictably unpredictable.
November is "National Family Caregivers' Month." We celebrate the contributions of caregivers. Perhaps it's time for us to do something concrete for our ALS caregivers. Let's fix a few things. If we can't cure ALS, then we need to help people deal with it.
Friday, November 12, 2010
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1 comment:
What a wonderfully written article. For me and my ALS, I am approaching day 2,481. My mind has been up and down and all around in handling my emotions. One day you are in the right frame of mind and the next you could be totally upside down. Not only are caregivers stricken with this disease there are the family members who become ill in other ways.
Life goes on, and for me I also must face all the realities of family life. I had to react to the death of my niece, breast cancer took her at the age of 42. Then it was my brother, her father who fought dementia in loss of speech and leg movement and eventually death without a diagnosis of anything. My sister suffers from schizophrenia and my other brother recently was diagnosed with Parkinson's. Call it the domino effect of the brain.
To me, ALS is the biggest -- smallest part of my life.
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