My mother is sick and I'm feeling awful

Hello, I have already made an anonymous post about my situation, I'm going to resume it. Sorry if I make mistakes, english is not my mother tongue and I'm kind of emotional writing this, I don't really think of the grammar and the spelling right now.

My mother have a myopathy, her face, leg and arm muscles does not work well. Her sickness is degenrative and genetics (I don't have it) so it's not curable. It's not a known sickness, we can't know how it will evolve in the future. But it evolves. I have always known her in a electrical wheelchair, but before my birth she didn't need one and she could walk normally during her childhood. I see it's getting worse. Her arms and hands doesn't work like before, she can't lift "heavy" things (more than 3 kg), she is getting really more tired and she deal more often with chronical pain. I'm affraid for her, I can't even know what will happen next.
We have life auxiliary at home. Thay're mainly here for the housework and preparing medication in the morning. My parents divorced 10 years ago, but if something terrible happened my father could still come and help. I don't have siblings.

Anyway, it was already kind of difficult for me. I avoid to complain, I'm obviously not the person suffering the most of the situation but it's still hard to see my mother not being well. But I recently find out something I didn't know.
I was looking out for new book in the familial bookcase, and I found a book for disabled parents, how to deal with pregnancy and baby. I think it's normal to have something like that. But I saw the book is from 2015 ans I was 7 at the time, I wasn't a baby and I didn't understand why my mother would have bought it. I start to read and there is an interview of my mother about me and her early motherhood as a disabled parents. There's even a pictures of her and me, I have no memory of taking this pictures but we did.
At first the interview doesn't bother me, it kind of reminds me of my childhood, it's nice. And then, my mother explain that she knew her pregnancy would put her in a electrical wheelchair definitively but she prefers that it was the pregnancy rather than her sickness.
But now I can't help but feel awful.

I worsen her situation. I see her suffer everyday, we always have trouble because of the wheelchair, the numbers of things we can't do, places we can't acceed do juste because of that wheelchair. And I play a part in that. I know that, concretly, I shouldn't blame myself, it was my mother decision, she chose to have a children. But I just feel like it was a mistake. If it wasn't for me, she maybe would be better now. Maybe her state wouldn't have been that concerning. I feel like I should have never existed.

Thank you for reading everyting. Sorry again for the mistakes.

 

I thank you all for your answer, it’s very nice of you.

I have a therapist, I think the next appointment is in a two week. As for my friends, I could talk to them, I sometimes do, but I don’t do it a lot because they already have a lot to deal with and I don’t want to overload their mind with my mother’s problem who don’t really have solution anyway.

I’m not really my mother’s main cared, she work as a school librarian, but there’s often problems with her salary because every other day she have to go to the hospital, for the follow-up care (I don’t know if it’s the good term) of her sickness. She’s recognized as an 80% disabled so we already have state help. For my father, I already spend holidays and one weekend every two with him. I guess that right now I could be more with him, but he has depression period, and I rather not be to much with him on those period, I don’t really like when he talks of suicide (but it’s getting rarer, I think he’s getting better). And also, since I help my mother a lot in the every day life, I would feel awful if I wasn’t at home when she fell down or something.

 

I talk with her about that because she noticed that I was not good lately. I explain I found this book and felt terrible and she told me she'll never regret doing this and that everything good in her life is because of me. I'm feeling so much better now. I'm happy to finally have the courage to discuss directly the sickness with her.

 

Coming back here because I want to vent a bit and I have already talk a lot about my mother with my friends lately, I don’t want to keep coming back everyday with the same problems.
I’m just really tired. We’re in vacation together right now and that’s really stressful. We’re in our cousin’s house, and I know their bathrooms isn’t the best for my mom. So, I’m always afraid she end up falling down while trying to shower or something. And she has diarrhea. There were two "accidents" this week, and I’m glad that at least, I didn’t have to whip her up, but it was still complicated… so it’s not really vacation in those conditions.
She saw that I was anxious. She told me that, if I want, we could stop going together in vacation. I now it’s always a bit stressful for me but I’m still happy to be with her. I don’t want to give her up.

When I’m in my father house, I’d rather not think of my mother. I don’t want to think about what can happen when I’m not here to help. I’m always anxious when I have to go back home. I love my mother. I really do. But some day, I don’t want to deal with everything, I’m tired to always have to panic at every sound because it could be a catastrophic thing or just the cat jumping on the table. I shouldn’t run away from my mother like that. I have to help her, I can’t just, not help because I’m stressed. I have to do something, I don’t know. Even if it’s not useful. It’s never useful anyway. I always did my best, I always did everything I could and things never seems to improve. Never. It’s not encouraging. But I don’t need courage anyway, I don’t have the choice.

I really hope she doesn’t feel bad because of me. I really really hope she’s not feeling guilty. She suffer already like that. I don’t want her to think she’s a bad mother because she’s not. She’s great and I love her.

Sorry for my rent, probably full of mistakes. I’m not a natural english speaker.

 

Thank you

 

Coming back here because I'm really feeling bad today...
I don't know why but some day I just think of everything related to my mother and it's too much for me. I'v been crying for two hours now I think. I don't cry usualy. But there's a lot to think of.
I remember spending my childhood thinking my mother has a weird smile just for the sake of it but no, it's her face muscle. I have never seen her smile normally. Always with some sick muscle all around. I just feel awful thinking about it. And I well never see her smile normally. She'll never get better. I know it. I won't hope for the impossible.
Some day she ask to help her lift things. I think "ohhh it's going to be around 10kg or something" no it's like 3kg or less ? There's really small thing not that heavy she can't lift. I see her arms getting weaker.
It's been two years since I have see her stand up. She was in the bathroom, asking me to help her put her pants back on because she was affraid of falling doing so. Since then, I have never seen her stand up. Not even when she get in or out of the bed.
I always want to be here. To help her, protect her. And at the same time I kind of want to run away and never have to confront that never again. I know it's not normal for a child to worry that much about their parents. Now I'm affraid my relationship with my mother is corrupt by the illness. Maybe my love is corrupt by the illness. Maybe every aspects of my life are. I can't escape it. Nobody can do anything about it.
I know I'm wrinting illogically and stuff I'm just tired and sad and worried and affraid and I can't think correctly.
I will never be enough to help her. I will never be enough for handle this. It's just too much. I'm just a teenager. I'm not a doctor. Even doctor can't help her. How could I ?

I just hope she will not end up paralysed. That she will not be incapable of smiling, even in a wierd way. I'm tired to feel like my mother is loosing her independance. She can still take care of herself.

Sorry it was long. If you had the bravery to read my bad written text until here, thanks.

 

France is catastrophic for this. There’s barely anything for disabled person, so for children of disabled parents… I have look out for this once, the few support group are all in big town and I live in a small village with small town around me. And I can’t travel alone.

 

The online support I have found are British. To access to the only active forum I have found, I have to register in a association but they ask for my address in the uk. I hesitate to register in with a fake address. Don’t know if it’s a good idea.

 

So I'm coming back here because even tought I felt better about this whole situation for a certain time (probably because I didn't think about it all that much those past mounths) now I'm starting to feel bad again.
So, I'm going to vent a bit here because I kind of need to. Sorry for all the mistakes in advance.

It's hard to pin down how I'm feeling exactly. I still feel guilty for finding out the pregnancy made my mother use an electrical wheelchair. I know it wasn't my fault but I can't help but feel guilty.
I also feel like I'm not helping her enough. I don't know how to explain this one. I'm helping the best that I can, but it's clearly not enough. But what would be enough ? I know I can't heal her, nothing can. I don't know why I feel that way. I always have the feeling that I could do something more for helping her but I have no clues of what.
Last mounth I was in vacation with her, and once again, it was a really stressful experience to have to adapt every hotel room for her and to always think about how to get over the next problems, and just, to see how it's harder and harder to find good hotel room for her just because she's getting weaker and weaker...
She told me she was really happy to go in vacation with me. And I am too ! I really wish I could only be happy to go in vacation with my mother but it's always so stressful and complicated...
The rare time I try to reach out about how I'm worried for her, she tells me that she just doesn't worry because she couldn't live if she was always worried. I see why she acts that way, I understand but I can't stop worrying like her.
Another point (sorry this text is not really organized) I think that I wouldn't be who I am today if it wasn't for the illness. It's logical that something that important has shaped my personnality. Maybe I wouldn't care about my mother if she was fine. I honestly don't know. I have no idea of who I could be if my mother was fine. And that's terrifying, I don't want to be tied to something that has destroyed my mother during her all life, but I can't escape it.
And last things, I don't feel legitimate to talk about all of this. I'm not the one in wheelchair. I'm not the one taking painkiller to sleep. I'm not the one having to fight with the french administration because they don't count the hospital appointements as sick leave since there's a lot of them, so she had to spent months underpaid. I'm not in the one who have the most to complain about. My mother is. But she never complain all that much. Way less than me.
Maybe she just don't complain in front of me ?
I don't know. I just feel selfish for complaining now.
I think I'm just lost. No matter how many things can happen everyday, no matter if I think about her sickness for hours or not, at the end of the day I will always feel like I'm lost and I will always feel guilty, even if I know I shouldn't.

Sorry for this mess. Thanks for anyone who has took the time to read all of that.