Carers fatigue
Posted: Fri Dec 15, 2017 12:17 pm
I just need to vent.
I have cared for my autistic son on my own for the past seven years. His father doesn't keep in contact and hasn't coped with his condition at all well, probably because he is on the spectrum himself. I had to give up my career that I loved because it was impossible to do everything with no child care or support from anyone. A while back I had an accident and needed surgery. My daughter, who was seventeen at the time, had to take on my caring duties whilst I was in hospital. My surgeon even contacted social services because he was concerned about our predicament, but the ******* social worker that came for a home visit said we were coping fine (!!). Her definition of fine is that I keep the house clean and haven't let myself go, that I feed and clothe and care for my children. It's not enough to say "I'm struggling", only neglecting everything and everyone would prove it. My daughter ended up self harming from the stress. In short, both my parents are dead and there has been no support. The usual story of friends drifting away over the years, yes - even the ones with autistic children of their own, - in spite of me trying to avoid that happening by not 'moaning' too much or not being completely authentic about how awful caring for someone 24/7 is. So it's always been in the back of my mind that I have been in a very vulnerable position.
Don't even get me started on the tragedy that parents are expected to support each other. We're all exhausted and struggling. Add the element of group psychology and dynamics to the mix and even going to support groups became another burden to endure. Some people cope by fighting the system. Well, I don't want to fight! Is that OK?
The grief cycle is so difficult to navigate. It's not only the grief of what I've lost - my self-worth from having a fulfilling career, or the friendships that have drifted, or feeling that I'd lost the only person who could understand and was my only ally on this journey. I've lost myself. I can hardly remember how I used to be. And if I do remember then it hurts. It hurts that I can't earn my own money and have control over my own life. I don't want to be a carer. There, I said it. I don't want this. I want to be how I used to be. I didn't knowingly get in to this and just because I gave birth to someone doesn't mean I'm an expert on his condition. I'm angry that society doesn't care for vulnerable people. I'm tired of being angry. I don't want to be angry for the majority of my time. I'm exposed to the worse elements of society and ignorance and frustration and it's depressing. All the self-help advice has an attitude of "if you try hard enough you can overcome anything". No you can't. No amount of trying will change the fact that unpaid full-time caring is demanding, exhausting and demeaning.
By some miracle, I found the most adorable, supportive and capable person. I've had trust issues after all the disappointment and hurt but he has patiently worked through it with me. When my son has a meltdown I get on a cycle of feeling bitter and expecting to be let down. Then I end up arguing with my partner. He doesn't deserve it, getting all the pent up anger and resentment caused by the situation. I feel isolated even though I have his support and understanding. How could he ever understand the fear and vulnerability I've endured? I feel broken. I feel my son's limitations have become my limitations. I feel exhausted from being exposed to the injustice and difficulties of living with (what society sees as) a disability. I'm a naturally resourceful, capable, happy person reduced to a quivering mess when the slightest problem can trigger a chain reaction that impacts my life for days. I feel like I have PTSD waiting for the next problem to happen. I feel if I'll be lucky if I live another five years because I am constantly stressed. Making our relationship work is hard work. There's been no honeymoon period where we can establish ourselves and bond as we'd be able to under 'normal' circumstances. (By the way "Married with Special Needs Children (A Couple's Guide to Keeping Connected)" by Laura Marshak and Fran Pollock Prezant is very helpful).
Last night my son had a meltdown. He wouldn't eat his dinner because I'd made it in the slow cooker. When I'd plugged in the slow cooker it had tripped the electric circuit. The PC was on at the time and it caused some minor problems, which I fixed. I also fixed the electrical problems AND made dinner. Go me! If I told anyone that has never cared the anxiety I went through trying to fix the problems before it triggered a meltdown in my son, I think they'd think I was exaggerating. So my son blames the slow cooker for causing the problems with the PC and no amount of explaining it was the socket that was the problem, not the slow cooker, would convince him otherwise. He didn't want to eat dinner because it was made in the slow cooker and he now blames the slow cooker for taking away his computer time. Then he had a meltdown anyway. That's what my life has become. I feel I have no control over any aspect of any of it.
I know that I'm saying very black and white things and that my perception of things doesn't necessarily mean they're correct. I need to get all of this stuff out of my head because the internal dialogue is driving me crazy today. I need to be listened to. I need un-judgemental, unconditional listening and since I can't afford therapy anymore this is the only option I feel I have right now.
If you've made it to the end of this then I want to thank you. Today I want to scream and cry and get back under the duvet. This is the last day I have to myself for about a month and I have things I must get done. I don't want to go out or speak to anyone but I must. My nerves are in shreds and I'm so tense from acting 'normal' when I feel I'm going crazy. Thanks for listening.
I have cared for my autistic son on my own for the past seven years. His father doesn't keep in contact and hasn't coped with his condition at all well, probably because he is on the spectrum himself. I had to give up my career that I loved because it was impossible to do everything with no child care or support from anyone. A while back I had an accident and needed surgery. My daughter, who was seventeen at the time, had to take on my caring duties whilst I was in hospital. My surgeon even contacted social services because he was concerned about our predicament, but the ******* social worker that came for a home visit said we were coping fine (!!). Her definition of fine is that I keep the house clean and haven't let myself go, that I feed and clothe and care for my children. It's not enough to say "I'm struggling", only neglecting everything and everyone would prove it. My daughter ended up self harming from the stress. In short, both my parents are dead and there has been no support. The usual story of friends drifting away over the years, yes - even the ones with autistic children of their own, - in spite of me trying to avoid that happening by not 'moaning' too much or not being completely authentic about how awful caring for someone 24/7 is. So it's always been in the back of my mind that I have been in a very vulnerable position.
Don't even get me started on the tragedy that parents are expected to support each other. We're all exhausted and struggling. Add the element of group psychology and dynamics to the mix and even going to support groups became another burden to endure. Some people cope by fighting the system. Well, I don't want to fight! Is that OK?
The grief cycle is so difficult to navigate. It's not only the grief of what I've lost - my self-worth from having a fulfilling career, or the friendships that have drifted, or feeling that I'd lost the only person who could understand and was my only ally on this journey. I've lost myself. I can hardly remember how I used to be. And if I do remember then it hurts. It hurts that I can't earn my own money and have control over my own life. I don't want to be a carer. There, I said it. I don't want this. I want to be how I used to be. I didn't knowingly get in to this and just because I gave birth to someone doesn't mean I'm an expert on his condition. I'm angry that society doesn't care for vulnerable people. I'm tired of being angry. I don't want to be angry for the majority of my time. I'm exposed to the worse elements of society and ignorance and frustration and it's depressing. All the self-help advice has an attitude of "if you try hard enough you can overcome anything". No you can't. No amount of trying will change the fact that unpaid full-time caring is demanding, exhausting and demeaning.
By some miracle, I found the most adorable, supportive and capable person. I've had trust issues after all the disappointment and hurt but he has patiently worked through it with me. When my son has a meltdown I get on a cycle of feeling bitter and expecting to be let down. Then I end up arguing with my partner. He doesn't deserve it, getting all the pent up anger and resentment caused by the situation. I feel isolated even though I have his support and understanding. How could he ever understand the fear and vulnerability I've endured? I feel broken. I feel my son's limitations have become my limitations. I feel exhausted from being exposed to the injustice and difficulties of living with (what society sees as) a disability. I'm a naturally resourceful, capable, happy person reduced to a quivering mess when the slightest problem can trigger a chain reaction that impacts my life for days. I feel like I have PTSD waiting for the next problem to happen. I feel if I'll be lucky if I live another five years because I am constantly stressed. Making our relationship work is hard work. There's been no honeymoon period where we can establish ourselves and bond as we'd be able to under 'normal' circumstances. (By the way "Married with Special Needs Children (A Couple's Guide to Keeping Connected)" by Laura Marshak and Fran Pollock Prezant is very helpful).
Last night my son had a meltdown. He wouldn't eat his dinner because I'd made it in the slow cooker. When I'd plugged in the slow cooker it had tripped the electric circuit. The PC was on at the time and it caused some minor problems, which I fixed. I also fixed the electrical problems AND made dinner. Go me! If I told anyone that has never cared the anxiety I went through trying to fix the problems before it triggered a meltdown in my son, I think they'd think I was exaggerating. So my son blames the slow cooker for causing the problems with the PC and no amount of explaining it was the socket that was the problem, not the slow cooker, would convince him otherwise. He didn't want to eat dinner because it was made in the slow cooker and he now blames the slow cooker for taking away his computer time. Then he had a meltdown anyway. That's what my life has become. I feel I have no control over any aspect of any of it.
I know that I'm saying very black and white things and that my perception of things doesn't necessarily mean they're correct. I need to get all of this stuff out of my head because the internal dialogue is driving me crazy today. I need to be listened to. I need un-judgemental, unconditional listening and since I can't afford therapy anymore this is the only option I feel I have right now.
If you've made it to the end of this then I want to thank you. Today I want to scream and cry and get back under the duvet. This is the last day I have to myself for about a month and I have things I must get done. I don't want to go out or speak to anyone but I must. My nerves are in shreds and I'm so tense from acting 'normal' when I feel I'm going crazy. Thanks for listening.