When I was a child, I had a fever

[cyrano]

It seems an appropriate time to discuss this; it's the dark of night, and that's when the monsters come out.
My mom has been managing more or less constant pain and physical/medical problems for thirty or forty years now. One of the reasons that I didn't follow the family to Idaho was that I would have ended up being a caretaker--the devoted child who does nothing but work and care for the elderly parents until they die. And I sometimes feel cripplingly guilty that I'm not willing to do that--to essentially return the favor. If they had stayed in Oregon, odds are likely that I would never have had sufficient impetus to remove myself from the situation. Anyway. She's not getting any better, and at this point much of what she's dealing with is damage and side effects caused by what were the current 'Modern Miracles of Medicine' back in the seventies and eighties.
Last night she called me because they're pretty sure my dad has Alzheimer's. His mother had it, and we took care of her for five years as she slowly degenerated. For the last four years, she had no idea who we were, and by the time she passed on, in my mind she had already been long dead. Which also made me feel amazingly guilty. I have a lot of issues with feeling guilty about the things I do in order to survive. Because they're harsh and they're not nice, and it's hard to admit that sometimes I'm not nice. Like knowing that my mom can't stand Idaho, and that the people out there are generally stupid and like it that way, and that out of our family I'm pretty much the only person she can talk to, and then choosing to avoid contact most of the time because it takes so much energy.
They told my dad that there was this medicine, and it would make the disease progress a little slower, and it was only going to cost $150 a month, and he's decided that they can't afford it. And they probably can't--Mom's Avon circuit is about the only income they have at this point, and it doesn't even make a dent in the tax debt they've accrued from being lower middle class during the Reagan Era.
So together their health will continue to decline and it doesn't look like there's any options available that look even remotely pleasant. And odds are pretty good that, given heredity, I'm going to end up in a similar situation in time. Slowly and painfully wringing the last bitter brackish drops out of my life. It makes me wonder what it would be like to drive into the median or off an overpass. There are no happy endings left, and I wish the Goblin King would come and take me away. Right now.

EDIT: It occurs to me that this sounds more suicidal than it is. I'm not planning to hurt myself. I'm not planning to find some romantic way to end it all. I'm just not looking forward to living out a life of misery and pain and gradual, inexorable degradation and attrition.

Comments

[odogoddess.livejournal.com]

If this doesn't help, please feel free to ignore, but is it possible for them to find the medication cheaper from Canada? Or if they prefer local low-cost meds there is:
http://www.rxidaho.org/

Even if not, your mom might want to know about this:
http://www.idahocareline.org/links_resources.htm

and there's a list of where to find low-cost or even free medical help or meds (lower right-hand side when you scroll down): here (http://www.idahostatesman.com/apps/pbcs.dll/article?AID=/20041009/NEWS04/410090303/1037/NEWS02)

That said, I wish you luck and hope some of that helps.

[cyranocyrano.livejournal.com]

I will certainly pass this along--it can't hurt. Thanks.

[cerulean-me.livejournal.com]

It's not just Canada... Mexico, Australia, New Zealand, Europe.... Most meds can be purchased online.

[jesshartley.livejournal.com]

*hug* I'm glad you escaped, and as much as I appreciate how much you love your family and want them to be happy and healthy, the first one you have to take care of is you.

Your mom should contact the drug company and find out if they have a program for low income people. Many do, although they don't advertise it, obviously. It fits into their "no one who need our drug should have to do without it" public image campaign, but they don't actually want people to use it too much, as that might cut into profits. Have her talk to her doctor, see what is available. Barring that, relocating, even if it means selling off any properties they might still have, cutting out any extraneous "stuff" they've been hauling around for the past 40 years and simplifying down to a condo or small house with few furnishings/decorations in a location she does enjoy (since it's going to be harder for her to do it later on, if your father does have Altzheimers) might be a godsend.

[cyranocyrano.livejournal.com]

Right now they're living in a two bedroom place--it's fairly small--but it's going to be hard to convince him to move. I'll pass this on, though. The house is the only property they have left at this point; everything else got sold to try to pay down the taxes. I'm really sorry some days that we lost the ranch up in Baker.

[lil-m-moses.livejournal.com]

*hugs* I'd be sad to have coyote time cut short, and I know others feel the same. So what if the very end might not be happy? It just might, and there's a whole lot of in-between opportunity for happy in the meantime.

[cyranocyrano.livejournal.com]

Yeah, I keep trying to remember that--I will reassure you, I'm not currently looking for a way out, I'm just having trouble seeing a way around/out and it's really hard to keep looking when that's all I see.

[aberrantvirtue.livejournal.com]

I'm going to say something that no one else actually has.

Don't feel guilty.

Yes, our parents took care of us as children...that's because they chose to *have* children. While it's nice to provide for them if you can...it's not your job. And if it threatens your emotional or physical well being, it's not really doing them a favor.

I know how hard it can be to get trapped in that cycle, but...

Yeah.

[cyranocyrano.livejournal.com]

I've been working on not feeling guilty for... decades. (: I'm getting better at it. But when I sternly point out to my emotions that it was a neccessary step and just look where I'd be if I hadn't, they're not always impressed.
My self-preservation instinct is more or less intact, and I *am* getting better.

[(Anonymous)]

As a friend of mine (pantsie) just wisely said in her LJ, put the oxygen mask on yourself before assisting anyone nearby with theirs.

--Wildpaletz

[mnarra.livejournal.com]

I agree with aberrantvirtue, but think you can't not-feel guilty.

So. As a carrier of the world's guilt, myself, this:

Don't waste the coldly brutal things you did to survive by spending yourself uselessly on self-flagellation. You were worth saving. Make the saving count for something.

[cyranocyrano.livejournal.com]

It does seem a shame to let all that calculated ruthlessness go to waste. I just wish I could inflict it on people who I didn't care about, instead.

[mnarra.livejournal.com]

It would be nice if you could...but with the people you don't care about, there was never any danger of becoming trapped, so no need for the ruthlessness.

<deep comment>
Only our loved ones are a real danger to us.
</deep comment>

[clayrobeson.livejournal.com]

*hug*

That is all.

[irismoonlight.livejournal.com]

***Hugs***

Sweet one:

You did what you needed to do to survive. The fact that you wish you were stronger or "better" simply means you have expectations for yourself you can't live up to--which is part of the reason you're depressed, yes? It also means you have a desire to change and grow, and paradoxically, that's important for you to get healthier.

I just used paradoxically in an LJ post. I may never live down the shame.

Now. Mom died of Altheimer's and side effects of medication they gave her for breathing problems (she smoked). She took the medication you're talking about. It did help. But all it does is stave off the inevitable. It is not a cure. It just makes the descent go more slowly.

If I have altzheimer's I might take the drug temporarily to make sure my affairs are in order, and I'd said goodbye, lucidly, to everyone I wanted to. And then I'd drop it. Because the descent is the worst part. You're in and out of lucidity, and you KNOW it. And I don't want to prolong KNOWING. Knowing my brain is going and not being able to stop it. Watching my friends and famiily stop talking to me and start talking about me. *shudder*

Your mileage may vary. Your parents' emotional needs may vary. My dad had to give mom all the medication he could and the best care he could so no one could say he didn't do everything he could do for her. I don't know what she wanted. ... I can't go there.

Some of her medications also had side effects that were humiliating, as did the altzheimers itself.

I guess what I'm saying is that just because a medication is available doesn't mean you have to take it. If your father has decided he doesn't want to, maybe you should honor that. The expense may just be his excuse. I don't know your dad. I don't know your parents finances or decision-making habits. You do.

Now. Take care of yourself. Watching my parents age triggered all kinds of mortality issues for me and is for you--it's normal, hon. But take care of yourself while you deal with I Will Die Someday and I May Not Die In a Valhalla Way. They're heavy topics. Make sure you take flotation devices and don't go into that brain of yours alone. 'kay?

HUGS.

[wilson-lizard.livejournal.com]

*hugs*.. I'm sorry to hear about your dad.

...and I agree with irismoonlight here. Alzheimers is already a slow, painful way to go. Not a lot of point in drawing it out.

My grandfather has it also. For about 5 years, he hasn't remembered my mother, who calls him several times a week. He often is irritated with having to come to the phone to talk to some stranger. It's very upsetting for both of them.

I used to wonder why she called at all, but she told me last week that she is trying to set an example for Sis and I, and hopes that we will do the same for her.

[cerulean-me.livejournal.com]

Ack! My comment just got eaten.

*Hugs* I can relate. I feel like I'm all my mom has, and that I need to take care of herf. Physically, she's okay... but is mentally ill.

I know that nothing anyone says can stop the guilt, though I hope that there is some comfort to be found hearing that you are doing the only sensible thing, taking care of yourself.

The drug program idea is a good one. Maybe give the pharmaceutical company a call yourself... heck, I can do it, if you can get the drug name.

I have Alzheimer's oall over my family. In reading about it, it sounds like there are many things that can be done to avoid it or at least slow it down. Playing chess is a good one. It seems that "use it or lose" it applies here. The critical thinking involved in chess works the brain and keeps it active, and seems to protect it.

[goth-hobbit.livejournal.com]

Oh, hon.

Virtual hugs are all I can offer. But you've got 'em.

[[[[[[[[]]]]]]]]

[miss-friday.livejournal.com]

It is likely you have at least 25-30 good years left, so don't worry about dying just yet. But you're not alone in your aniexty. Several major religions were founded on your insights.

Alzheimer's is a cruel disease. Like many others who have commented I too had a family member afflicted so. In my mind my grandmother died eight years before her physical death. There's no shame in thinking about it that way, for what made that person who he was is long gone by the time physical death came around.

I would go and visit your folks at every opportunity in the next year or so though. Let them know you care, even though you can't be with them. I know it's a strain, but it would assuage some guilt, and maybe make your Mom feel a bit better too.

We do have to be selfish sometimes, it's the only way anyone can survive.

[outlawcoon.livejournal.com]

I think family is important but you can only do what you can do. Don't forget to take care of yourself, too.