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You’re Under No Obligation to Read This

I didn’t even mean to post it. It’s just a person pouring out pain on the internet. But if you want a look at what it means to deal with mental illness, then you can read on. If not, amuse yourself with my cat, partake of the other excellent offerings on the toobz, and wait for Los Links.

I spoke to my aunt today. We’re not a close-knit family: I haven’t actually talked to any of them since my grandmother died, several years and two cities ago. But Mom scared me enough that I went on a hunt for people I haven’t talked to in ages, because I needed to know what was actually going on.

And it’s ugly.

My mother’s disease has progressed to the point where she can barely function. My demented 90 year-old grandfather is actually doing the driving for them now, because she can’t even make it down the road to his house. How he remembers to pick her up, I have no idea. But you know it’s bad when it’s the guy who should be the caree becoming the carer.

There’s other stuff, and I won’t go in to it. But it’s gotten bad enough that her sister and her brother have been trying to find residential care for her. And apparently the doctors are saying that she’s just going to get worse with age. If they can get her to sign the release form, I’ll be able to talk to them directly about that. But considering she’s been out of the hospital for just about two months now and is rapidly deteriorating to the point where she’s going to have to go back, I don’t doubt that things are getting worse. There may be no more good days.

I’ve already lost my mother. I lost her to this disease a long time ago. The woman she was has been gone since I was a teenager. I’ll probably tell you about her sometime. She was incredible. I know most kids are partial to their moms, but she really was extraordinary. She was everybody’s mom. Our entire neighborhood loved our house, and loved her, because she always had activities and adventures for us, so much time and love. And she’s still a very loving person, but she’s been like a child for a long time now.

When she had her first breakdown, once we got her committed, the doctors were able to bring her back. She was my mother again. The problem is, she felt well, so she stopped taking her medicine. You can’t do that when you’re bipolar. And she entered this vicious cycle for a while where she’d have a psychotic break, get medicated, think she was better, stop taking medicine, and descend once again. And they were able to bring less and less of her back each time, until she became a shadow of what she used to be.

But she was still a wonderful person. Everyone loved her. She was like a child, a very simple person, prone to yammer on about her animals and her family, both of which were the most important things in her life. She married a violent alcoholic and only left him for good because he threatened her dog. She didn’t care about herself, but she loved that dog. That fucking dog saved her life.

And then she moved back to Indiana to help out with her mother, who’d been diagnosed with Alzheimer’s. She’s stayed there ever since. It was supposed to be temporary, but she and her dad need each other.

It’s been mostly okay. She’d had a few times where she ended up in the hospital, but she’d usually come out stabilized. But over the last several months, possibly longer, she’s gotten dramatically worse. And now begins the coulda-shoulda-woulda, because I don’t know how much of her is left and how much they’ll be able to get back this time. We had an adventure planned. I didn’t go out there over the summer because I got busy, and then she got hospitalized, but we’d thought, someday. Someday, when she isn’t so busy with her dad. Someday, when she’s a little better. Someday, when I’m a little less busy with things here. Someday.

There may never be a someday. Right now, I’m wondering if I’ll ever see her again, and if I do, if I’ll recognize her.

I’m looking in to options to make sure she’s taken care of. My aunt and uncle have their hands full trying to take care of their dad; it’s tough for them to take care of her, too. I’m far away, and there’s no job market back there. If I try to move, all I’m doing is giving up a good union job for probable unemployment. Won’t be able to support myself, much less her. Even with this job, I can’t afford her treatment, and she won’t come out here anyway while her dad’s alive. There are few options for poor people. She’s lucky to be disabled enough that she gets some care from the state – she’d be dead without it – but I have no idea if I can get her care in Washington if we try to get her out here. These are things I’ll have to investigate, before we even try to talk to her about her future. And I can’t bring her here without having a facility to bring her to.

I’ve tried living with her before. It was too much for one person to handle even before she got this bad. I can’t help feeling like a selfish shit over that, but this isn’t something I can do alone. But I’m sure as hell not tearing her away from her family only to have her put in a nursing home. The only way I’ll bring her out is if we find a good assisted living facility that will make her happy. I know they exist. I just don’t know if we can find the resources to pay for one.

And then there’s the fact that even if we can, it might not be a good idea to install her in a strange city, where there’s only me.

These are the kinds of things that those sanctimonious bastards who preach about personal responsibility and sacrifice never have to face. They don’t value lives like my mother’s. They don’t have to make the choice between a job and a relative. They don’t have to worry about their loved ones ending up dead because they can’t get them the treatment they need. According to them, I should have planned my entire life around her disease. I should have gone out and got rich, because I knew this day was coming, didn’t I? Never mind that so few of us can join the 1%. Never mind that we can’t afford the education that might have given us a shot at that. Never mind that no health insurance company in this country would take on a bipolar person, that mothers don’t qualify as dependents for your own health insurance, that even if they did, the mental health care it pays for is laughable when it comes to seriously ill people. Even my vaunted union-negotiated Cadillac health insurance pays well for mental health care. It wouldn’t even cover the necessary doctor’s appointments and medications, much less the 24-hour care she’s going to need soon, and really needs now. My insurance is for functional people.

And I’m not alone. I’ve got friends dealing with the same dilemmas. They’ve got a mentally disabled relative on their hands, and there’s so damned little they can do. Some of my friends sacrifice everything they have to care for their relative. Some of them don’t have to just yet, but might soon. Some of them have discovered that no matter how much you want to help, no matter how much of yourself you give up, you still lose.

But you don’t give up. You can’t.

So that’s life right now. It’s not like other people aren’t dealing with their own crap, and a lot of people have it far worse than I do. And I’ll get it figured out. It sucks, it’s painful, it’s life. We go through some shit, and then, usually, it gets better.

There’s this spark of hope: she sounded a little better today. So maybe, just maybe, there’s still a someday. We’ll try to get there.

One step at a time…

Comments

  1. says

    I don’t know what to say except to offer my sympathies.

    Working in an emergency department today I admitted three people because of ‘carer failure’. People whose whole lives had been swallowed by caring, who couldn’t cope any more.

    And this is in a country with a nationalised health service.

  2. Nele says

    My best wishes to you and your mother.

    It’s stories like these which make me deeply grateful to live in Germany, a country with a decent and efficient health system.

  3. says

    Jesus, Dana, I’m so sorry. How awful. It’s stories like this one that make me short-tempered with people who say they “really don’t follow politics”. Everything is political. It isn’t about speeches; its whether we pull together or apart. Cons want “apart”.

    “It’s stories like these which make me deeply grateful to live in Germany, a country with a decent and efficient health system.”>

    “Decent and efficient” – our health care system is neither. I wish stories like this were rare but…

    This is why Christians say “I’ll pray for you” – they want so badly to feel like they’re doing something. An illusion of caring when the reality is so much harder…

  4. says

    So sorry, Dana. I for one would love to hear about your mother in her best years sometime, and here’s hoping that you will get some good time together.

  5. judykomorita says

    (((((((hugs))))))) Bad enough to have one family member in need of full-time care, let alone two.

    Those shoulda-coulda-woulda’s really hurt. And they hurt more when you love them more. I hope you get to see your mom at least one more time. And I hope you are able to find her the care she needs, at a price that’s affordable.

    No one should have to sit between the choices you face. But shit, it happens. We wade through it and try not to swallow too much of it, because sometimes the alternatives are worse.

    Again, take care of yourself. Love on that devil-kitty when you need de-stressing. Write/blog about it as much as you need. We’ll listen.

  6. says

    I’m going through the same thing right now, though Mom and I really don’t have much contact with any of the family. I have a hard enough time keeping a grip on my own sanity sometimes; trying to shore hers up takes more than I have to offer, lately.

    I just don’t know what to say. I’m so sorry to hear that other people actually have to do this too. This isn’t one of those situations where I find empathy helpful– I don’t *want* to know that anyone else has to live like this.

  7. Beth says

    Please accept my sympathies. You were quite eloquent about your dilemma. Thanks for sharing what it’s like to face such decisions. What you wrote was touching.

  8. Laura says

    I am so sorry to hear what a difficult spot you’re in. Please accept all my best wishes for you and your family, and I hope you’re able to figure out some solutions.
    I have been lurking around here for a while now, but I wanted to comment to let you know I’ll be rooting for you and your mom.

  9. BaisBlackfingers says

    There is alot of talk about the need for atheists to build community. We (at least I) appreciate the effort that the bloggers here have put in to provide us with one. Blue Collar Atheist went through a rough spot lately and I think the response to that was an excellent example of doing community right. Please let us know what we can do to help.

  10. F says

    Damn. Yeah. That’s a constellation I’ve never seen before. A decent sized family caring for one incapacitated member as a united group is rough enough.

    Best wishes in finding something that will work out for Mom and everyone. If Mom can regain some grip and stay on her medications, even better.

    (internet hugs from a stranger)

  11. andrea says

    My husband is bipolar, quite rapid cycling and thank science that he’s found a drug cocktail that works (Zyprexa and Prozac). it is hard not to feel selfish when you simply can’t take being around manic depressive folks. But it’s not, it’s just human. Hardest thing I ever have done is sticking by him. I wish you the best.

  12. says

    This really strikes a chord with me, I am so sorry. My uncle has had extreme, incapacitating mental disease his whole life, and the feeling of burden can be a terrible one. This shit breaks apart families and leaves its victims feeling helpless. You and your family are in my thoughts.

  13. Dana Hunter says

    Thank you, all of you. I am so bloody grateful for you all I haven’t got the vocabulary to express it, which is big, considering I’ve been told I’m a sesquipedalian. (I had to look that up. It means someone who uses large words. Heh.)

    Between your comments and the visit with an old friend, I’m not doing badly at all. Wouldn’t be able to handle this reasonably intact without support, and I haz it.

    All of you who are dealing with mental illness either as sufferers or carers, I feel for you. I wish I could do more than offer just a listening ear and work on raising awareness of these issues. JT’s getting a website started for those of us in the skeptical community who are dealing with this, so at least we’ll have a place to go for help and company. That’s a huge thing. We’ve needed this.

    I’ll be writing further on this subject, and I’ll be babbling about my mother as time goes on. She was and is a phenomenal woman, and I’m glad so many of you are willing to get to know her. I’ll also be documenting the journey as I try to get her the mental health care she needs. I think it’s important to show, because it may help others dealing with similar situations.

    We are none of us alone.

    Love and hugs!