***blows dust off blog ... cough and sneeze ... blink and then prepare to share***
Longtime readers know that my sister and I share
guardianship of our older brother who has autism. Bill is doing great, thank
the goddess. Over the past several years, we’ve managed to patch together a weekly
routine and residential plan that he truly enjoys. He’s in a good place. Medicaid and our beloved father’s Social Security death benefit make this good
place possible. We cover dental expenses and extras, but the cost of providing
necessary care for a 47-year-old man is not something our family can float on
our own. Knowing that in our new political reality is a terrifying thing,
Like millions of other people, I’ve been dealing
with the fallout from last year’s election. I’ve been juggling work and tons of
related travel with time with calls to Congress followed by calls to my state
legislature followed by calls to my brother’s community program administrators followed
by calls to my brother’s residential team followed by more calls to Congress all
balanced off by tightly scheduled time-slots reserved for staring blankly at a
random spot on the floor.
God bless that random spot on the floor. I seriously
look forward to staring at it hard after sharing why Medicaid cuts are a horrible
idea with half the damn Senate.
***pause … raise glass and salute random spot on the floor …
This is our new reality. We share it, give or take a few
specific details, with millions of other people. Somehow that is both comforting
and alarming as hell.
What most of y’all don’t know is that my sibling-based
family now has an additional concern. Earlier this year, our 76-year-old mother
required placement in a skilled nursing facility. We’re not sure what’s going
on, but it may be dementia or something along those lines. Whatever it is, she
is no longer able to live on her own nor is she able to live with family. My
mother requires skilled care … and, as we already know, care requires funding.
So, I added another name to my script, edited it to include
Medicare, and continued to call Congress and my state legislature and then
Congress again and again and again because they keep playing politics with
Medicaid and Medicaid and Social Security again and again and again.
This new role is complicated. I’ve been estranged from my mother for over a decade. Estrangement was a hard move to make, but it was the right one for me.
Trust that it took a lot of inner work for me to decide that participating in organizing
her care and advocating for its funding was the right thing for me to do too.
But I arrived there and now here we are.
***pause … take a big breath … continue***
That’s what I’ve been up to in my personal life. Check
for more information on what I’ve been up to on the work
side of things.
Stay tuned for bitchitude ...