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.

I really feel for you. I am one of those parents too. My son is now am adult and lives in a wonderful placement but I was a single mum and did consider suicide a lot. They were awful years and I have lasting effects from them. Anyone who judges has no idea what it can be like.

I've lived with depression in the past but only before my children were born. Yet I completely understand the feelings.

Two of my children are diagnosed with PDA/Autism, and the elder of the two also has some significant joint/mobility issues and has had 11 surgeries to date to treat it, she had major surgery a few months ago she's only just recovered from fully. And now they say she's likely to need another surgery within the next 12 months.

It's intense, I'm a single parent and my family all live in my home country so I can 100% understand the feelings of isolation. I liked your comment regarding the goldfish bowl, I think that sums it up quite well. To the outside world, people say I'm an amazing father, so brave and strong, that they couldn't do what I do. No they couldn't.

I had a great career and earned great money, I had close friends that I used to see every day in the office but now I've left my position around the time my marriage ended I've seen them maybe three times since.

I'm in the position where everything has to be fu**ing perfect, there's no otherwise xyz will happen. It just has to be perfect. The pressure to have tiny lives totally reliant on one for absolutely everything is 1000x more than the pressure I ever had when I was working.

I wish I had any helpful advice, but I hope that if nothing else the above makes you know that you're not alone.

Not surprised. I planned what I was going to do and used to think about it regularly.

I'm also a parent to two ASC/PDA kids. I honestly feel a whisker away from this. I'm already taking antidepressants but I'm going to call my mental health team in the morning.

I'm exhausted, so lonely.

Didn't want to leave your comment without reply.

I know how hard it is, but things will get better. You're stronger and braver than you know.

I am so sorry, I am not in your position and think you’re amazing doing what you do each day. Never think you’re a bad Mum, you’ve gone way beyond most of us. And it’s so understandable you feel like this, it’s exhausting, please try not to feel guilty.

I'm one of those parents too

The amount of times I've gone to bed hoping that tomorrow never comes -but it always did and now my children are adults I'm pleased I'm still here -but I can't deny that I have a trauma response to certain things that send me spiralling

As a family we were denied respite because my child didn't want it -I didn't bother asking for help after that

It's hard and people, including family members, massively underestimate just how hard it is

I’m one of those parents too. One DC with ASC, PDA, ADHD, SPD and dyspraxia.

When I get 5 minutes peace, I idly research Swiss clinics and the price of a one-way plane ticket. Except I’d never do it because he needs me too much.

💐

Amazed it's only 41% to be honest. Solidarity.

Yes i feel you 100%. I feel like having a disabled child has removed all my choices....cant work, cant do as much with older child...and i dont even have the choice to kill myself because there is no one else to care for him. I am trapped. And i am sick to death of hearing 'but hes doing so well and youre a fantastic mum'. That changes nothing. Life is hard and relentless

I’m so sorry, I am not in your position but I sit on the board of a charity for disabled children and young adults and spend a lot of time with parents who are in your shoes. I am constantly blown away by the fierce love all the parents in our association have for their children and how they cope with seemingly impossible situations on a day to day basis with such grace. I have so much respect for them and for you, you are doing a phenomenal job and I hope you manage to find some help and support for you and your daughter xxx

This is such a hard read. I sympathise and completely understand this statistic and the dark experiences some of you have had. I desperately want another child so DD5 doesnt live her life as an only but I’m so worried I’ll have a severely disabled child and end up in that space that I think i’m not going to. I would never admit this to anyone in real life. DD has a “minor” disability and I just know I couldn’t cope with a child that had a more severe disability. I wouldn’t want to do that to her either. It seems like a ridiculous reason not to have another child and to potentially leave her alone in the world in later life but I also know that life could be tougher for all of us if that’s the way the cookie crumbles.

I hear you and totally understand.
I was also there and at one point got very close but I couldn’t leave him as he wouldn’t have coped. When I found myself planning to take him with me I went and asked for help. It didn’t take the wish/thoughts but it helped me live with them and I changed my plans to stay until he was an adult.
Now he is, I’m still his full time carer, it is a little easier and I find it easier to cope and am glad I managed to stay.
I know it feels like it often but you aren’t alone

I am also a parent carer of a very disabled child and I just wanted to say you’re not alone in feeling desperate. It’s an incredibly lonely road at times. I’ve had a dark couple of years, it has just felt totally relentless- a lot of hospital time.

I am trying to be gentle with myself, trying to find some small outlets of joy and speaking to a counsellor after being referred by my GP.

Sending you strength, hope and as PP, solidarity.

I’ve got two children with asd and adhd. My youngest is 12 and profoundly disabled and will need 1:1 care for the rest of their life probably by me. I’ve contemplated ending it all but I could never leave my children. But I hate my life. I feel trapped and I watch everyone living and don’t feel part of the world. I feel lonely and utterly broken. I’m just so tired and I’m grieving my life and I’m sad as my other children have to bend and flex for our youngest child. We have no respite but do have a social worker who is zero help. I’m a prisoner in my own home and I miss being able to make decisions easily because all decisions have to take into account our child.

Sending you big hugs. Please reach out if you want to talk. Could you speak to your GP and access any counselling?

I have 2 children with v complex needs and that is why I spend so much time on here ! MN has replaced normal friendships. I cannot get out and people have stopped visiting . Even family make no effort. It is incredibly isolating in a way others would find hard to comprehend.

I seem to have killed the thread with my last comment but following on from that what ideas do people have to combat the isolation and loneliness often experienced by carers ?

Apologies for not coming back to my own post. Was such a bad day.

I don't know what the answer is, I've pondered it for years. It's not like people aren't supportive, the GP always asks if I'm ok, there's a school family liaison person who is always at the end of the phone etc. I have seen counsellors but even as I'm speaking to them I know they can't understand because they've never lived this life.

For me, not every day is like Sunday. I know for many every day is equally as mentally torturous, I send you nothing but love.

Me too.

This gives me hope that the future will feel better. When I'm in the depths I focus on the next thing to look forward to, be it a birthday or Christmas or even something as small as what I'll have for dessert tomorrow. Pathetic or what.

Do you mind if I ask what age your son moved into placement? How did you and he find the transition?

I do sincerely believe you have to take joy wherever you find it. I got quite excited when I realised we had taped Grace on Sunday to watch last night. Small pleasures !

I've sent a pm.

I have a disabled DD and a DS with a health condition. It’s never ending. It’s a battle looking after them and a battle endlessly with the NHS, school and other services to get them what they need. I can’t work, DH and I can’t go out together as no one to look after them. It’s just exhausting. I’ve definitely thought about dying, not suicide as such, more ‘I wouldn’t be worrying about all this if I was dead’. I wouldn’t do it as they need me but it definitely crosses my mind. What an awful thing to admit out loud. I love my children but it’s so hard and tiring and limiting.

thinking about this reply it struck me that even when we do have options to talk and get support it still revolves around talking about our child ( or children) so it isn't any sort of a break at all. We need to switch off from the constant thinking monitoring fighting, planning and caring that is our daily life and opportunities to do.thst are few and far between. I long for a group of people who understand it ! I want to feel that I belong and fit in with families in the same position.

this is another thing I struggle with . The endless battle! Why does everything have to be so hard . Even services that should be on your side seem designed to trip.you up and I feel like I am engaged in some sort of guerilla warfare most of the time.
I struggle with frustrations anger a lot these days.