11/18/2016
First and most importantly I want to say thank you to everyone who has messaged, texted, sent lovely cards, and so many other "heart nudges" and kind words.
The adventure with my silly brain is ongoing. Surgery again sometime soon. One surgery last month. Several before. Lots of tests and re-tests and lots of "ologists" (doctors) in the mix. Thus my continued absence from the majority of the world. Can't tell you how much I miss my "normal".
I've debated hopping on to simply rant... Somehow seems selfish to be MIA so long and suddenly pour my guts out... but at the same time it's one of those "not just happening to me" situations that I'm loathe not to shine some light on. I may be largely quiet at the moment, but that doesn't change how much I love "my" heroes and families - and how much it fires me up to an extent few things can when people start screwing with them / us.
As of two days ago I'm "officially" (according to the VA) no longer a caregiver. My husband is apparently cured. Not sure what I'm doing then in those 20+ hours a day. Must be a figment of my imagination that the man I love is still living 24x7 with the physical, mental, neurological, and other costs of serving his country.
I'm through my first round of appeals. About to start the next. Explaining some of the nitty gritty of the insanity of this would require me to be less than careful and conscientious with my primary responsibility to my dear hero to honor and respect his privacy.
But basically, huge screw up (in civilian world would have been a malpractice lawsuit waiting to happen) 18 months ago by my husband's Primary Care doc (at that time) resulted in an even larger "mell of a hess."
A mess I've been begging, pleading, talking, messaging, emailing, etc, etc, everyone I can think of within the VA to try to find creative help with.
And then at the beginning of August I had my "annual visit" with my Caregiver Support Coordinator (ideally the person in the VA system who acts as my ally and advocate and helps me push for the best possible options when I'm out of options). I talked to her honestly. Revealed my need for help. I actually cried. (I don't cry in front of the VA...) I asked her to help me figure out how to work around a billion miles of red tape and get my husband started back with a mental health provider.
The result of that soul-bearing conversation? I was notified about a month later that my husband no longer needed my help... or anyone's help. That not only had he apparently been cured, but I was no longer eligible to be his caregiver.
(I guess that will teach me to ask for help... Right?)
So we appealed. With a letter included from his nurse (and the VA provider who has known him the longest) that said it was reckless and irresponsible for the VA to take this step.
[yep, you read that ^^ right... a U.S. Department of Veterans Affairs nurse said "hey, this is crazy and should be illegal and is at the very least immoral... Have you people lost your minds???"]
Also included letters from family and friends, records proving the initial (majjjjjjooooor) screw up by the Veterans Health Administration (VHA) - U.S. Department of Veterans Affairs that started all this crap.
I asked for the national caregiver support office to review my appeal before I submitted it (just to make sure I wasn't missing a step).
And the answer? "We know more than those people even though we've never actually met you or your husband"
So back to the health situation.
I was on top of preparing for the income loss (as much as we could when loosing 2/5 of our income a month before Christmas... Holy crap) but because I qualified for health insurance both as a caregiver and as a spouse (two separate ways that "dependents" qualify for ChampVA / the VA health insurance program for family, etc) and I was in the middle of the appeal process it didn't dawn on me to triple check what would happen if I needed to switch categories.
My surgery is on Monday. Well was. I was supposed to pick up and start medication today to prepare for that. I have spinal fluid flowing out of a hole in my spine (sort of a good idea to get that handled). And suddenly (even though I still qualify despite this crap) I'm not officially covered for 6+ weeks (though I can back file claims and in theory get them covered but they can't guarantee that...)
So, in short:
2/5 less income
Apparently hubby is magically cured (not by good therapeutic practices but by a massive screw up...)
Hole in my spine
Can't fix the hole until VA pushes the right button in the computer
And... (This list could so turn into a book)
If I was the only caregiver this was / is / has happened to, I would fuss in my head and rant within the 4 walls of our home.
But I'm not.
This ridiculous, asinine, pointless "new and improved" review of caregivers (and whether or not their heroes need them) by "neutral" parties (aka people with no knowledge of or experience with a veteran or his/her caregiver who simply read summaries and decide they know what is needed) has to go.
You cannot review the intricate and varied needs and conditions of heroes without ACTUALLY knowing them. ESPECIALLY in situations where those heroes face multiple physical, mental, and neurological challenges.
(Even my 10 year old knows better)
Holy crap.
Yep. That's my life.
But worse than that... It's becoming the life, struggle, and burden of soooooo many families like ours because a "new" process (that sucked when it was a pilot program) is now being implemented nationwide.
Great for the VA's bottom line though....
