Monday, October 30, 2017

A quick update …

***blows dust off blog ... cough and sneeze ... blink and then prepare to share***

Shall we?

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, especially now.

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 … continue***

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.

Also ...

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***

Yep, here we are.

That’s what I’ve been up to in my personal life. Check out for more information on what I’ve been up to on the work side of things.

Stay tuned for bitchitude ...


dinthebeast said...

As someone who is disabled from a stroke and gets his healthcare funded by Medicare and Medicaid, and only has income because of SSDI, I share your concerns.
Thank the Flying Spaghetti Monster for Highland Hospital.
I worked and paid FICA taxes for 32 years prior to my stroke, so it's not like I didn't pay for these insurance benefits, but even if I hadn't, those programs should still be there for those who need them.
Thank you for your work, and it's good to read your voice again.

-Doug in Oakland

Shark-Fu said...

It's good to be back, Doug!

DesertRose said...

I'm glad to see you posting again, but I'm sorry that family stuff is being so difficult (for multiple values of "difficult," by the sound of it). And I feel at least some of your pain regarding the catastrophe masquerading as a government right now. I'm disabled, on SSDI, Medicare, Medicaid, food stamps, and I live in subsidized housing. I'm. . . stressed.

*offers a comforting/relaxing beverage of your choice*

Cuddle those dawgs and, if you and the puppers are so inclined, give them a pet and a treat from Florida. :D

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