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General PTSD & ASD -- Coping with Cancer

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RussellSue

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I found out a couple of days ago that my stepfather just had one kidney, his prostate, and his entire bladder removed due to cancer. He has been sick for over two years, even before we left their area, but he did not want me to know and only gave my mother permission to tell me during our last conversation.

We saw them over the summer as we were moving out of the state, about a year after leaving their county. I asked my mother then if he had cancer because he looked like shit. She said no. I did not know what to think since he was recovering from thyroid surgery. I told myself that was the whole problem. No, I didn’t believe it, but we had two cats and all our shit with us and I figured that if something were really wrong she would have told me before we started heading out of state.

As former gun store owners, my parents live a mile down a desert dirt road in the middle of nowhere and are completely off-grid with wind and solar power and an Onan generator big enough to power a hospital. They live on 60 acres with no nearby neighbors and own more guns than I could fit in my mid-sized car in a half-dozen trips, I am sure. He is a combat veteran and my sister and I have many reasons to believe that my mother has high-functioning autism. They married when I was 15, permanently independent, and living 900 miles away.

My mother has no friends, at all, and never did, though she used to go out in public much more often than she does now. I was her only female companion in the area for a long time. I have never loved their intense isolation and the feelings that they are becoming more antisocial by the day but I have no choice but to accept it. I have hated the fact that my mother’s social anxiety increases and her chance of ever being relaxed around other people is pretty much over and done with after 20-some years sitting on that piece of dirt feeding rodents. She is 64.

She was a waitress in a city when they met, but he wanted this retirement and she was happy to follow along because that is what she has always done with men. She also got to "retire" at 38, I believe it was. In real life, she became his caretaker and their property maintenance person when he became disabled. He is her third husband.

My understanding is that I was not told about his illness because we would have stayed in the area if we had known, though we couldn’t do anything to change it. I get that and it is true -- we would have stayed. I am, nevertheless, feeling pretty damned protective of my mother right now considering that she has been absolutely isolated there and was forbidden to even talk to me -- her only source of support -- about something so serious as facing her husband’s (and my closest thing to a father's) bladder cancer.

I have little doubt that my stepfather has PTSD and at 76 with 20+ years sitting on the same dirt surrounded by guns, he probably does, in many ways, consider me an outsider. Oh, he does love me, but I’m not a representative of their culture and my fear of guns is a sore spot. I feel that he has put my mother in a very unhealthy spot as an isolated and emotionally/mentally differently-abled caregiver and I wonder if he hasn’t reached a level of distrust that is bordering on destroying them both. Neither of them knows I feel this way.

I am nearly 1300 miles away now and have been for a few months. They say they got all the cancer which why I was allowed to be told, but oddly enough, I haven’t been feeling that great about it -- he’s also a diabetic who’s now had a urinary diversion and is operating with only one kidney. In the meantime, my mother appears to be dissociating, as she often does.

Our new plan is to return to the state this summer rather than the summer of 2022, which was our original plan. I would like to at least throw healthy food at their house from the dirt road since my mother isn’t driving to town to shop, anymore. We don’t know if we can do it, but we are going to try.

I am planning a conversation with her today to try and make sense of the situation in the here and now. But I feel I have to be very careful of what I say because I am afraid that if I tell her I resent the position she is in, she will repeat it, and I will get pushed back even further.

I am a member of this site because I am in recovery from complex PTSD (caused largely by my mother's second husband's love of guns). I no longer have an active diagnosis and I am posting in supporter discussion for the first time due to the nature of the situation, though I would be thrilled to hear from anyone -- I know I got lengthy.

Thoughts, advice, observations? I’m still processing and remain in a state of shock.
 
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Hi, I just feel like saying I support you. We have so much in common. Our parents are gone though so, we’ve been through all this and it’s very hard. I like your posts and I’ll look forward to your writing about this part of your journey. I don’t really remember when I first started posting here if my mom or my wife’s mom was alive still. I think her mom was the last to go. Now our kids are worrying about us.

Nothing easy about it. Writing helps me a lot I hope it helps you too.
 
Hi, I just feel like saying I support you.
Thank you. That does help.

I just don't get it. I am so powerless, right now. And I wish I'd been given the opportunity to make my own decisions based on what my gut knew was going on instead of being lied to. I even stood there after seeing that he'd had his neck cut into and said that I knew they wouldn't tell me if he was very ill.

They just stared at me. Assholes. 😂
 
It’s really so hard and I’ve learned I can’t do anything with anyone in the family and how do you let go of them when you feel like you have to do something. The dynamics are impossible and then I get stressed and I do something i feel bad about and blah blah. They seem to be unhappy if you do something or if you do nothing. Plus when our parents were ill there was more guilt to go around and we guilted each other.

So anyway, I know how you feel. : (
 
The hardest part about being a supporter is being completely powerless to help or fix. Sometimes it feels like you literally have to sit on your hands and bite your tongue.

Although I will say, a lot of times it’s easier to actually take care of logistical things for them if they’ll let you. Talking about any kind of health management or caretaking is like trying to snuggle a honey badger while simultaneously slamming your hand in a car door... but dropping off supplies can go well if you do it without fuss and fanfare. “Hey I ran to the grocery, and grabbed you some stuff while I was there” end of conversation.
 
So they didn’t tell you... because they didn’t want you to drop everything and go back to Oregon.

So now that you know... you’re going to drop everything and go back to Oregon.

I’d have a serious think about that.

- Because, yes. It’s your decision. And they tried to make it for you.

- However, if they don’t want you there? That’s their decision. They don’t have to let you into their lives, at all. Even if you lived next door. So I’d look very carefully @ Exactly what do you hope to gain? If the only way they knew you’d respect their wishes is by keeping information from you? How far are you willing to damage your relationship with them, by bulldozing through their boundaries because you’re pissed off & think you know better? (I’m not saying you don’t know better, they may be f*cktard idiots who need you to look after them, because they can’t be trusted to look after themselves. But even drooling morons have boundaries. Deliberately disrespecting someone else’s isn’t a thing to enter into lightly. Especially when we love them. )

So some middle ground might be worth looking at... like flying to their home to visit regularly, sending care packages, calling them since they’re not big on calling others, etc... rather than picking up and moving to camp on their lawn. When they -expressly- don’t want you to do that.

The whole “giving people with PTSD space can be a loving act” thing.
 
Just wanted to add... I often write the exact same way I talk / what I’d say if we were kicking back with a coffee on the deck or margarita poolside. There are some flaws with that because the back & forth / tone / grins / general goodwill can get missed.

So I just want to be clear... I’m NOT saying don’t go, nor attempting to imply that you haven’t thought seriously about it. If it weren’t for the pandemic you’d still be a short drive away from your folks, and you’re already planning on moving back in a couple of years, anyway. ((Although it sounds like they kept it from you when you were still there? Which is another reason to question moving back “because”.))

It’s just a reeeeeally rough / often counterintuitive thing coming at situations from this side of the fence. Everything *I* need as a Sufferer is totally clear (cough, to me), but then when I’m Supporting someone else? It’s all bass ackwards. Because what they need & want -vs- what I need & want is often sooooo exactly the same but completely different. 😵

Case in point? StressCup. Sufferers often can’t handle their own emotions... much less anyone else’s. When it’s me? It’s not personal, I just can’t handle -someone I love dearly- on top of my own stuff. But when it’s someone I love, that can’t handle me? Because their stress levels are through the roof? It can be reeeeeally hard to not take that personally. Even when I know exactly what that’s like.

For realz, I’ll take being the one who’s holed up & hurting, stressed the f*ck out, over someone I love doing the same thing... every single time. Pity it doesn’t work that way, but it’s still my preference. It’s waaaaay harder watching someone else manage -badly- than doing badly myself. Because when it’s me? I can fix shit. When it’s them? I can’t. Doesn’t stop the urge to meddle, though. So the self-control factor gets huge.
 
So I just want to be clear... I’m NOT saying don’t go, nor attempting to imply that you haven’t thought seriously about it.
Thanks @Friday. I always assume you mean well even when I do have brief moments of thinking you are picking on me. 😂 Plus, I always appreciate your willingness and ability to analyze things and report on your well-considered findings.

I did talk to my mom more and I don't think she agreed with the decision to not tell me, at all, but respected her husband's wishes. I am also taking it less personally with the realization that my stepfather has his own kids and that one of them has been involved in helping. I may have been being paranoid about feeling that my stepfather was trying to deliberately push me out of my mother's life. I'm now more assured that they both agreed that rural central Oregon was not a healthy environment for me and so when I decided to go, they didn't want to stop me. Apparently, they were also told that his bladder cancer was likely to be easily treatable, but with all the covid-related medical delays, they did not know better until the very end -- after we were already in NM. Up to that point, they apparently thought it was nothing to worry about and not something to worry us about.

As for the decision to pack up and go again -- I am in no condition to make any decisions, but most especially 1,300-mile decisions. I've been off Lithium for about 3 weeks and I have been getting worse and worse mood swings, blaming this, that, and the other circumstances. My husband seems to see it more clearly than I do -- go figure... Yeah, I'm feeling immobile and a lot has been going on but the level of depression and irritability that has overcome me over the last 24 hours, immediately after a flurry of wild decision-making is not close to normal. Incidentally, it looks damned bipolar. Sigh.

I think I will go crawl back into bed and try not to make any good decisions, though I am not sure I have enough sedatives to support that decision.

Thanks again.
 
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