This was written November 10, 2012.
ALS is a horrible, debilitating and wicked disease.
It robs your body, but leaves the mind functioning.
A living hell.
And my sister’s reality.
How can this be?
According to her wishes, care has been cobbled together.
Because she wants to die at home.
Not in a geriatric senior’s residence, or impersonal hospital.
But her condo in downtown Toronto.
We were lucky.
And found a caregiver who found others who has made it happen.
Cobbling together care from the province & privately.
So that my sister can be as comfortable and private as possible.
While respecting her decision not to be seen, as she degenerates.
It hasn’t been easy over the last two years.
But its been her choice.
And her death.
I can’t control any of it.
And I can’t fix it.