41% of parents caring for disabled children have contemplated suicide.

[Catslanding]

www.birmingham.ac.uk/news/2024/more-than-40-of-parents-with-disabled-children-have-thought-about-suicide-study

I found this by googling pretty much the exact same thing. I'm having a bad day. The only thing that keeps me here is her, my beautiful disabled daughter.

Have any other parent carers ever felt this way? It's the most isolating job. I've ended up pretty much completely alone due to my own health suffering as the years drifted by in a blur, me giving more than I have, one emergency after another. I often care for 16 hours a day, some even more than that. I have no energy left for anything. Leaving the house is physically and mentally difficult, there's no such thing as jumping in the car.

I feel like we live in a goldfish bowl, I can see out but nobody sees in. I watch everyone else living whilst I do the same routines all day, every day, if I'm lucky, some days I'm too ill to do them.

I love my child so much, please don't read this and think she is in any way responsible, she's not. She's wonderful and I'm so glad she's here. I'm also very aware of being unable to voice these feelings in real life because I know people who have lost children. They would give anything to feel like I do right now. The guilt of that compounds the feelings I already have.

Even writing this scares the shit out of me because if she dies tonight I'll regret this post forever. I feel like I'm not allowed to feel how I feel. It's impossible.

I try so hard to be a good mum but I'm shell shocked from the trauma I've experienced as a 'medical mum' (hate that term, don't know how else to describe it) One thing after another after another. It's brutal. There's no time to process any of it. I used to write but now I can barely form a sentence. I feel so fucking stuck. I'm a robot.

I don't even have the option of suicide because she needs me too much. I know her inside out, I keep her alive. But it doesn't stop me thinking about it.

I can't be alone in these feelings?

If you know any parent carers or carers in general, check in on them. This life is not for the weak.

It’s sad but hardly surprising. My father was sick for years and dependent on my bother and me. I frequently thought about suicide and my brother actually went through with it.

I could have written this. I don’t feel like an actual person either, just a shell of who I used to be.
And as harsh as it sounds I wish my children had never been born. Their whole lives are going to be dependent on the state and social services and I wanted better for them, my life and sense of self, ability to feel happiness, it’s all just faded away to nothing, I want to die, I just can’t actually be bothered to end it all.

I'm amazed it's 'only' 41% too.
It is very difficult. Your life is totally dominated & forever changed.
You are isolated & often have money issues as it is hard / impossible to work.
There is 'no way out' as your child / YP needs you so much. It is decades long.
You stay & you do it, day in & day out as you love them. And there is noone else. But yes, it's incredibly hard.

Very much identify with this thread. I'm feeling horrible and very very alone at the moment. Pulling myself through each day. Constant house moves, eviction notice, school and absences in previous years, loss of work and friends and my mental health. In the criminal justice system awaiting allegations to be charged or not.i feel huge huge shame and despair and sadness that I cannot find support even though I've tried my hardest to. I'm living with my ex husband now again because I have no choice. My youngest is depressed and traumatised by the changes in the last year and I feel absolutely helpless in the face of it all and guilty that I could not have stopped it.
Another weekend alone in my head wondering how to change the situation and my mindset. No energy and just wish I could run away but I cannot.

@Sheeparelooseagain and @flapjackfairy and everyone else who is living with a child/children with SEND.

A florist full of💐and a bakery full of scones.

For me, as well as contemplating what kind of life my child might have, it is the endless, overwhelming flight for their rights. The NHS and education often put obstacles in the way unless we fight every inch. Just in the last 2 days we have sent multiple emails, had an hour online with solicitor and 1.5 hours today with clinical psychologist around another diagnosis (to add to the list), and to try to push forward with educational non-provision (even after a SENDIST tribunal!).

As much as I love DS and wouldn't seek to end my life, I do very often wake up and think, oh no. Another day. Which is no way to live is it? I often have a very dark day on New Year's day. I think it's the thought of facing another year of battles and nonsense from those supposed to help.

DH is good at talking me round when I feel low. I'm lucky in that I can go out for a walk if I want to. It sometimes does me good.

No answers, but yes 41% must be a conservative estimate. It is a tough, long old road. The SEN forum on here has helped me a lot with practicalities and legal knowledge. And I know the Samaritans are there if I need to talk, which I find reassuring even during times when I'm low but not suicidal.

I am sorry ! I keep saying there are no words to help which is true but I don't want you to think.people haven't read and acknowledged your feelings x

that a sounds incredibly difficult. I hope you can find a resolution to.your housing situation soon . It us all hard enough without the extra stress all.that brings. x

Sending so much love to all those struggling

For anyone in Hampshire / Surrey looking for respite, I can highly recommend Challengers - disability-challengers.org/our-services/

There can be a waiting list to access the services, but they provide access to play for disabled children and young people, including those with significant care needs

Checking in and I hope everyone is okay. Or as okay as you can be. I really relate to people who’ve said they don’t feel like a person anymore. I feel the same. I’m a husk of the person I once was and I miss her and I’m so desperately sad that all the plans I had have turned to dust because of one child. A child who I adore but who is so challenged that their quality of life is so poor. She’s able to stay at school until she’s 19 but I don’t know what will happen after that. There’s no local Sen clubs and the one we drove miles to, she screamed and screamed until we went back for her and she’s 11. When I look at what other 11 year olds are doing, it breaks my heart. My dd can’t talk, can’t tell me how she feels, can’t say she’s in pain. Her older sibling is also autistic but she’s at a complete different level. I’m just exhausted. Everyday feels like a struggle.

I’m thinking of each and everyone of you and I’m so sorry that we’re all in this horrible boat. In my lowest moments I wish I’d not had my dd. Her siblings although they love her, really resent how small and tough our lives are. The tiny flecks of joy feel even harder to come by these days.

Hey to all of you, I can relate to everything you have all said. I hate that I can hardly remember what life was like prior to this.

My DD is 14 now and non verbal, incontinent and will need 1-1 forever. I too have had more moments that I care to remember that I just wish life would end, end for both of us 😢 she has no future and it scares thee life out of me what will happen to her when me and her dad are gone. It's terrifying.

I actually think there should be provision to allow assisted dying for parents and their disabled children. Can't believe the state hasn't actually put in place given how much money it would save them 🙄

I would love for there to be some sort of way to interact more easily with other parents carers. I'm midlands too and I also don't believe it's only 41%. No way.

@Clarovo I have actually had similar thoughts, it’s just robbed us of anything resembling family life.

I recently voiced thoughts that my children would be better off dead to a crisis mental health worker who was disgusted with me and actually reported me to social services. I tried to tell her how hard being a carer is and she snapped that she didn’t know anything about that. Isn’t she the fucking lucky one?!

i would like to talk to more parent carers too but most of the groups I’ve tried seem to be parents who say things like they wouldn’t change their child for the world and how much of a blessing their disabled child is and I’m sorry but I don’t feel that way. At all.

If I could change my children and magic away the disabilities: i would do it in a heartbeat.

Please don't give up hope. My son is un a wonderful placement and is so happy. My health meant caring for him as an adult was never an option. But he is living thr best life possible.

Yes I have, single parent,daughter with autism. It is a lonely place to be, no social circle anymore. Regularly thought about putting my foot down, shutting my eyes and driving into a wall.
Things are better at the moment but the depression and stress will always be there.
It's a loneliness that only parents of children with disabilities will ever understand.

I do wonder how much of this is down to a lack of support. I was honestly suicidal after twins as was so genuinely sleep deprived. Sleep deprivation is a form of torture. At least I knew at some point they’d get older and let me sleep. I can easily imagine the frustration of dealing with unhelpful agencies who don’t want to spend their budget on your child or if there is a budget no carers or applicants. Combine in exhaustion , sleep deprivation and no end in sight I’d of thought the number would be higher. I think this is why proper respite care is so important. If you know you have to get through x then you can have a proper break it makes life much more bareable.

I think we are on dangerous ground there even though I understand your despair. I am actually against assisted dying for this v reason in that I think.it would be the thin end of the wedge and would lead to all manner of abuse and pressure of vulnerable people in the interests of it being in their best interests.
These sorts of issues should never be considered in monetary terms in my opinion.Sorry that sounded abrubt . I didn't mean to . I am sorry it is so tough for you. I don't know where you are exactly but PM.me if you want x

I don't have children but I work with children with SEN, some pretty severe. I have no idea how the parents do it, day in day out. You have my full sympathies and it's one of many reasons why I don't to have kids.

@Clarovo, my dd is 12 and sounds very similar to yours. We mainly come across girls who mask and are “high functioning”. My dd cannot speak, cannot do any personal care, cannot read or write.

Our life doesn’t feel like a life. It feels like we’re just surviving. Our world is so so small. My other kids have missed out because their sister struggles so much in the world. Even something as simple as a walk is too much for her. She is severely disabled. She will need 1:1 care for the rest of her life. And I will no doubt end up spending the rest of my life providing her with that care.

@theresabluebirdinmyheart I hate the shitty narrative that a disability is a superpower and I’m not sure I believe those who say they wouldn’t change their child for the world but would change the world for their child. I would 100% take away my two children’s disabilities as it is heartbreaking.

I don’t think I’m even a person anymore. Raising my children (and I love them to bits) has been soul destroying.

I’m for assisted dying. I cannot bear the thought of leaving my 12 year old behind when we die. I can’t even leave the house when she’s home with her dad as she becomes utterly distraught and screams for hours. Life for her is painful and difficult and she doesn’t really have a good quality of life. The world is too much for her.

Yes, I know exactly what you mean about your world being small @Robinnohood - ours is also so limited. Some of that is my own doing: I have distanced myself from parents of NT peers since DS went to a specialist school. I don’t want to hear how well their NT kids are doing or about their academic achievements, party invitations, sleepovers, etc. Meanwhile my son cannot use cutlery or tie his shoelaces and will likely insult or upset someone if they come over for a play date. I guess I am bitter and resentful, but I don’t want DS to have this life. I would 100% take away his autism if I could and the “superpower” shitehawks can get in the bin.

I am also hoping there are options for assisted dying when the time comes. We have a tiny family and certainly nobody who will step up for DS. I shudder to think what state services will be like by then, and yet he won’t cope without us.

Knowing that I will now never really retire (at least from caring) has been particularly hard to swallow, for some reason.

Your posts brought me to tears @Robinnohood and @Vinvertebrate 😢 Yes we're in a very similar boat, our world, my world, is shrinking by the year. Every year that passes I get more tired. I don't recognise the person I am compared with even 5 years ago.

It's exhausting trying to have a normal life so you stop doing things. More and more things until, like you say, it's surviving, not living or thriving.

Dodgy ground, yes flapjackfairy but the feeling is very real. Death isn't always the worst option but the feelings and conscience of others seems to be more important than the feelings and welfare of those directly affected.

I've just happened upon this thread - and cried reading it.

I agree with so much of what pp have written.

I have a disabled dd (12)- at times she can be ok to manage. But she has a secondary condition, that when it flares up is just hideous. She has one potentially 2 operations coming up, which will add more challenges to the mix.

She is a lovely little girl - but sometimes I really resent the situation we are in. I see no future. I feel I have no life to look forward to.

I'm definitely not one of those who wouldn't take away my dd disabilities in a heartbeat.

Thank you all for posting - I feel so guilty feeling how I do, I've never really been able to voice it as I'm worried what people would think of me. It's just so hard

Absolutely @Clarovo - the bone-tiredness with it all is just so very debilitating. Everything feels like a fight, because it is. Access to healthcare, a school that meets needs, adjustments to anything “normal” we might want to attempt (the planning! 😮‍💨) and even basic understanding from others. My son (at almost 8) is finally now able to use the loo with support, but I have nobody to celebrate with because the temptation for people to assume I was just too lazy or useless to toilet-train him was too strong. (Never mind that he used to tear handfuls of my hair out when I even mentioned sitting on the loo!)

It’s a lonely place. 💐 to all posting on here.

I’m shocked it’s only 41% if I’m honest. I wake up every day and am saddened to still be alive. I can’t do anything about it though as I can’t/wont leave my two boys. DS 6 has ASD/ADHD/PDA. He needs me too much and my second is 3.

To be honest, my life is so isolated and lonely, I can’t imagine being dead is any more so.

I'm so sorry for what everyone is going through. The meltdowns are slowly breaking me. At times the things we've been through have pushed me into ideation - I'm very lucky to have a supportive dh. I think the real number would be much higher than 41% - there's sometimes a lot of shame and judgement in admitting youre struggling.

People said to me a lot "i don't know how you do it" when my twins were small on account of the fact theyre twins. Drives me mad - what other option do you have? You HAVE to keep going. Nobody else is going to bloody do it if you don't.

And yeah, the superpower shit can get in the bin.

Well I am in exactly the same situation as you so I am not looking at this from some sunny upland where all is hunkydory. I just don't agree that anyone should have the power to end someone else's life .

I'm a single disabled parent, with 2 disabled DC and struggled so so much. But there is little support or help.

I begged and begged for help, for respite,
I got to my breaking point, told a social worker to take my children into care that day, to be told "oh we aren't at that point yet" (I WAS) and then nothing after that phonecall and a few hours later, I was seconds away from dying by suicide. I was found by a stranger who saved my life. I saw no other way out and no way to get my children the help they needed. I'm not at all surprised by this statistic