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10 November 2015 @ 11:56 pm
Beyond At This Point.  
You guys, I am ass-to-the-ground tired, but I haven't posted yet this month, so I am going to commit a cardinal sin and copy/paste some stuff from my Tumblr and from a comment section with a good friend, to explain where I have been and what has been going on.


This bit here...-....The first week of the month has been a bitch and a half. Mom was suppose to go home to her house on Thursday, but instead Halloween night, around 3am, she went to ER by ambulance from the rehab. Sodium levels had dropped dangerously low and they couldn't get back up - from the heart stuff. Finally did, and released her back to rehab for a few more weeks, but in the meantime, she needs $2000 a day (nope, not a typo, it's 1k a pill, 2x a day) for helping to keep her sodium absorbing properly, cuz her insurance won't cover it. I am trying to find a way to get her the pills, also working on a stack of medical bills, a spend down on her Medicaid/Medicare she didn't know she had, and a year's worth of unopened mail we found shoved in her file cabinet. Taking care of my mother has become a full time job...-...

And then there's this...-...If your sodium level drops low enough, you can have seizures or, you know, die. Today we found out that the pill my mother needs to take in order to absorb her sodium pill properly, and thus keep her sodium levels up to a non-dying level, costs $1,000. Per pill. And she has to take it twice a day.

To put it another way - it will cost $2,000 a day to keep her alive. $14,000 a week to keep her alive. $60,000 a month to keep her alive. $730,000 a year to keep her alive.

And her health insurance will not pay for it.

She was just released from the hospital after nearly crashing completely on her sodium levels - causing her severe confusion and hallucinations. She is stable now, but without the medicine, she will be right back in the hospital in no time. And, eventually, it will kill her...-...

I am so tired. I just want some time to write again. I have ideas. But instead, here I am working almost 20 hours a week - on top of, you know, being chronically ill - on my mother's snafu-of-shit that (aside from the health stuff) she basically caused herself by, idk, Not Ever Opening Her Mail.
 
 
 
Jo Annyeuxdebleu on November 11th, 2015 07:53 am (UTC)
Whoaa! That sounds terrible. Since your mother is old enough to quality for Medicare, won't they cover ANY of the expense?

The cost of the med she needs reminds me of what has happened with one of the AIDS meds. Maybe you've heard about it. The company that makes it has a new owner and he raised the price from a few dollars per pill to something crazy like $450 per pill. And there is no law preventing him from doing this. The prices of many meds is totally out of control in this country.

Why did she have so much unopened mail? Does she suffer from a form of dementia, or Alzheimer's disease?

What a dreadful burden for you. I hope you can come up with a solution.
dodger_sister: grumpydodger_sister on March 5th, 2016 08:04 pm (UTC)
Whoaa! That sounds terrible. Since your mother is old enough to quality for Medicare, won't they cover ANY of the expense?

She has Medicare and Medicaid, but they won't always cover certain meds. And they will cover rehab, but only for X amount of time and if she isn't better by then, they figure it isn't working and they stop paying. Never mind that some people take longer to heal than others.

The cost of the med she needs reminds me of what has happened with one of the AIDS meds. Maybe you've heard about it. The company that makes it has a new owner and he raised the price from a few dollars per pill to something crazy like $450 per pill. And there is no law preventing him from doing this. The prices of many meds is totally out of control in this country.

Oh yeah, I followed that whole thing real close! Because that is just a exaggerated version of what all drug companies do with life saving meds. They know we can't live without it, so they jack it up. I mean, if you need it bad enough, you'll pay any price right? Unless of course you can't pay any price and then oops, oh well, screw you.

Why did she have so much unopened mail? Does she suffer from a form of dementia, or Alzheimer's disease?

For the last year before all this began, we had been discussing with her siblings that we thought she was getting dementia. But now we realize that at least part of it was because she wasn't getting enough pumping from her very sick heart. We didn't realize she even had heart issues, let alone so bad as she did. She is still not great, slow and forgetful, but that can be explained by her general exhaustion and poor health from recovery. But the complete confusion is gone and that was from the heart. Still, I am opening all her mail from now on!

What a dreadful burden for you. I hope you can come up with a solution.

Think you. I love my mom, despite our off-kilter relationship. So at first it was just "family does for family" which we are big on in my family. But we just hit the six month mark of her fall/heart surgery and she isn't home yet, so I'm getting pretty tired of it all. And so is she!
Ironlily - Making My Marquevikingprincess on November 11th, 2015 12:01 pm (UTC)
It all just sucks so freaking hard. *HUGS*
dodger_sister: grumpydodger_sister on March 5th, 2016 08:14 pm (UTC)
So, Mom update: She has been back n forth and back n forth from the hospital to the medical care unit to the rehab and back around again, for the last few months. Congestive heart failure, which is manageable and livable, but they can't find a medicine balance that works for her. She also won't exercise and eat the way she should and she swings from upbeat to depressed on any given day (at least I understand that, after six months of this shit, I'd be surprised if she went any other way).

She has like 10 days left in rehab, completely, not for this stay, but like after all this time. Now she can't go back in rehab unless she stays out of all medical facilities for 60 days, including hospital stays (which won't happen, lol). If she stays out of the hospital/has no major medical issues before next weekend, then she will she go home to my aunts house and after like a month there, she'll go home to her house. (She is NOT taking my dog back! I tell myself she'll never get that far along to a place where she can take him, but I will fight her, arm wrestle the old lady or something!).

She's just never gonna get any quality of life if she doesn't fight for it and she seems unwilling and almost like she likes being sick, so....yeah. There, quick update for you. We just hit the six months of her fall/shattered shoulder/heart attack and this shit is still going strong.
Ironlily - Making My Marquevikingprincess on March 6th, 2016 05:57 am (UTC)
Oh, ugh! Those choices are bad for her, but they're also bad for everyone who cares about her. It makes more work and more stress for everyone if she won't try to make smart choices consistently. :(

Oh the other hand... dog. (yeah, trying to be a little silly for you, but... dog!)
Who'da thought, baby? We're civilians.dugindeep on November 11th, 2015 03:30 pm (UTC)
Oh hon, I can't even imagine the kind of stress you're under. I'm sending oodles and oodles of hugs your way <3333
dodger_sister: grumpydodger_sister on March 5th, 2016 11:03 pm (UTC)
Mom update: So she runs completely out of rehab money on Thursday (the 10th?) and will be released to live at my aunts house temporarily on Friday. She isn't strong enough I don't think but the insurance has run out and she won't get more money until she has been out of ALL medical facilities (hospitals included) for at least 60 days.

Mom says she is active and eats well. In reality she refuses half of the exercises they make her do and they keep asking us for suggestions of things they can bribe her to eat bc she won't eat, says she's not hungry. Like I'm not hungry half the time either, but I make myself eat because I need to keep my strength up. That's how the body works!! We worry about what will happen once she's been at my aunts for a month or so - like will she insist on going home when she clearly can't care for herself, will she get the accomadations she needs to live alone, or will she just get worse and break something or fall down or whatever and be back in the hospital and we'll just start this all over again.

I have no idea, but six months in and there has to be some sort of conclusive ending here, damn.
Kate: Hiding Catceitfianna on November 11th, 2015 08:22 pm (UTC)
*hugs* I read about the sodium on your tumblr but ugh, not opening her mail. I'm sorry you're dealing with her mess.
dodger_sister: grumpydodger_sister on March 5th, 2016 11:09 pm (UTC)
So rehab is releasing Mom in a week. Not because she's ready to go but because her insurance has run out. The system is broken. But my aunt is taking her for awhile anyways, while she keeps getting stronger (which I doubt since once she isn't in a place where they push her hard like rehab, she's just gonna stop doing her exercises and eating and all that). I'm sure eventually she'll insist on going home and have another accident and we'll start the whole thing over again. But she's not taking my dog back, I'll tell you that! (M says not to worry about that, because Mom'll never stay out of the hospital long enough for that to be an issue).

But we have worked out the mail system! J picks it up, gives it to me, I sort, throw out junk mail, label the rest with stickies - Pay Bill, Give To Mom, File, etc - and put it on J's desk. Once she gets to Aunt's house, I am sure the whole system will break down!

Ugh, I just depressed myself.
lindahoylandlindahoyland on November 12th, 2015 03:47 am (UTC)
I'm so sorry. You make me very thankful for our NHS.It's not perfect, but no one has to find money like this save maybe for a new cancer drug.
Big hugs.
dodger_sister: grumpydodger_sister on March 5th, 2016 11:14 pm (UTC)
In more depressing talk about how America's health care fails us - rehab is kicking my mom out in a week because her insurance money has run out. Not that she is ready to go At All, but that she has no money left. Thankfully my aunt is willing to let her come stay at her house until she is strong enough to go home. I, of course, am worried that once she is out of rehab, where they push her hard, she will slack off on eating properly and exercising and working towards her goal. It's not that she doesn't want to go home, it's just...idk, maybe her mental illness, but she just Stops and I don't know why. I also worry she'll have another fall or accident and be back in the hospital and have to start all over again, except this time with any rehab money from her insurance. One step at a time I guess, let's get her discharged from rehab first.
ranuaranua on November 18th, 2015 10:13 pm (UTC)
Ah babe ((hugs))
dodger_sister: grumpydodger_sister on March 5th, 2016 11:17 pm (UTC)
So, Mom is still in rehab - six months after her initial fall and subsequent heart attack - and it looks like she might get one step closer to home, as rehab is kicking her out because her insurance has run out. Yep, not because she's well, but because she's broke. My aunt is taking her in temporarily, but as happens when you release someone before they are ready, I foresee bad shit. An accident, fall, heart issue, sodium drop, idek - but she thinks she'll be at Aunts for a month or two and then get to go home. I don't see that happening, because - as happened the last time she made it all the way through the cycle to aunts house - she doesn't take care of herself and ends up back in the hospital. Idek, but I'll guess I'll just focus on the next week and getting her discharged and transferred to my aunts house and then worry about the rest.