[dekuji63]

I hate being a caregiver. I hate being responsible for everything. I hate the sickening sweet look and syrupy "Thank you" that my husband plies me with when I'm forced to bring him food or clean up his dishes or take him to the shower or change the bedding.

I will never have a life. Between him and the autistic kid, there is no life. There is a crappy part time job that doesn't make a dent in the damned medical bills, there are the broken promises.

And the guilt - oh, let's not forget that! On top of being supremely pissed that I have become a physical and emotional service station, I also get the added bonus of feeling guilty for being mad that he's sick and disabled (possibly permanently but no one knows for sure), and that our son is clueless and lives in his head and is a complete life drain on me.

Yeah. That's the best part.

No wonder I score so well on all the depression tests.

I hate this.

[Rhapsody]

<font color="purple"> ((((((( HUGS ))))))) ~ ~ ~ ~ ((((((( HUGS ))))))) </font>

Please know that many people feel your pain for we have been there and while we loved the ones we took care of - we still had resentment grow with in us and it even reared its ugly head in us from time to time as to try and breathe....... for it is hard giving up your life for another.

I remember when my daughter died at the young tender age of ten - after being 100% handicap from birth - it felt like a bitter sweet sorrow inside me..... I hated those mix feelings.

[curley]

There are many wonderful programs for autistic children. Many are state funded or on a pay scale. I have seen wonderful results in a little boy that has a class where I worked. That is something I would look into immediately.
I can understand how you feel. You are the total support mental and physical for your family. That can wear out anyone in a short time. But why do you resent your husbands effort to thank you. I do not understand that. Dont you think he feels like a burden already! I wish I could be more supportive, but what if it was you in this situation! Maybe if you find someone to be there so you can get away once in a while to just relax, go to the show or whatever! Maybe you could come to the support chat here. Maybe some of the members would have some helpful advise. Good luck to you

[ziggy1]

You are not ALONE I FEEL YOUR Pain! I'm looking into getting some outside care for my mom, im in a similiar situation and its like hell. Unfortunately the only releif i get is when i have a few drinks to numb or kill the pain...although i'm not advocating it!!

All these other drugs and crap the doctors hand out just poison you more. Someone suggested meals on wheels...I'm thinking about it.

I'm sorry to here about your autistic child, try to remember its not his fault he has autism. Does he go to a Day program to be worked with?

Do you or ever get out with friends, relatives? Can someone give u a hand once in a while? I really know how ur feeling i'm at my wits ends too. Being a caregiver is very hard
especially when your stuck doing it all yourself!!

I'm going to take a computer class this winter or spring, i dont care im going to start getting out more, sounds like u need to get out a little here or there yourself. Besides the crummy part-time job.

Please feel free to PM me aanytime if u have any questions or just want to talk. Im sure we could relate with many things!

Good luck and pop into chat if u get a chance lots of good people there...peace out, good luck, Ziggy1

[dekuji63]

Rhapsody, I am so sorry to learn about your daughter's loss. That is not something with which I have any experience - having your child die. Knowing people who have lived through that doesn't mean I can even wrap my head around it.

Thank you, too, for your kind words. I appreciate how you understand that mixture of sadness and love and anger. It's so hard to say it out loud, so hard to think anyone else will not think you're horrible for feeling that way.

Thank you.

[dekuji63]

Thank you, curley, for your reply. I suppose it is hard to understand how "thank you" can be infuriating. Maybe it's how he says thank you. I don't know if I have the words to explain - probably not clearly.

It's taken me a long time to get back to this site. The days just spin by and who knows where time goes. Thanks for being here!

[dekuji63]

Ziggy1, I'm sorry to hear about your mom. It sounds like you are working on getting some help and that's wonderful. I hope the things you find and choose are going to relieve that strain we both know all too well.

For me, it's almost reached a point where finding help is just "one more thing to do" if that makes sense. Some days are better, some days are manageable. Some days are two steps past awful. But I'm trying. I'm finding a few reliable friends who are willing to help out with our son. Just getting him out of the house and around other people is huge.

Thanks again. I really need to add this site to my regular visiting places. So many kind and understanding people here!

[rappacinisgarden]

Hi deku: I am really sorry to know what u are going through. it must be a hard situation to manage since you are the soul support of your family!
Anyway, i think your feeling of guiltiness is a normal reaction. But some way you might have to find a way of thinking about yourself a little, you know, a little support for yourself in order to take some weight off of your shoulders, and to be able to see the "light " ahead.

I think the suggestion of a state supported special centre or any other oraganisation may be able to help your child. Maybe you should investigate... There is always somebody out there willing to help, you just might not see it right now. And about your husband, i think he could understand that you program some time for yourself to do whatever you like. In the meantime somebody could be at home to cover his basic needs, except for those that he might judge intimate, whivh you coukd be in charge of.

You know, something that helped me was to make an exchange with other people: i used to be in charge of a small nephew of mine but when i had to work I programmed with a friend, that also had a small child, to take turns in taking care of the children. I don't know, this might help and it's free.

Anyway, I think it's important you start to do something for yourself, BUT, without feeling guilty about your family. Start thinking about what you would like to do! Maybe, there are activities which your child could be with you while you participate.

Hope I helped even though a little. Love, beatriz

[dekuji63]

Thank you, beatriz - I appreciate your thoughts and ideas

[AAAAA]

I know what you mean with the "thank you". Like nails on a chalk board.

[gordian_knot]

I read your post, and I couldn't get it out of my mind.

I'm not going to give you any advice, suggestions, tips or life lessons. Based on the eloquence of your writing, I can tell you're smart enough to have explored all of your options.

I'd simply like to say... well, that your words pierced me. For much too long I've been feeling isolated and caught in the vise of my own situation.

For some reason, now my load feels a little bit lighter.

Thank you for saying what most won't.

[dekuji63]

GK, when all you have left is rage, it's what you use to keep yourself upright. At least, that's what works for me.

However you have gotten where you are, please accept my sorrow for your situation. I hope you find what you need.