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.

So sorry to hear this @Sayithowiseeit

I was once told by a barrister with experience in advocating on behalf of SEN/disabled families that the only way to get help was to take your children to the LA and threaten to leave them in their care indefinitely unless appropriate support was given. Sadly I don’t even think a drastic step like that would work any more.

I'm sure I read something recently where to get support the mother just didn't pick up her kids from school.

It's so sad and ridiculous it's come to this

Lots of love @Sayithowiseeit
Please tell you have some support now? X

Has anyone found therapy helpful? I’ve been caring for my autistic kids now for 14 years and the low moods seem more prevalent than ever and they’re proving to be really low and really dark. I just feel utterly disconnected from the world. It’s difficult to talk to my husband as although we live in the same house, our lives are very different. The impact of our kids needs although have affected him, the caring has fallen to me and he’s lived a fairly normal ish life. But I feel like I’m alive but barely breathing and I’m not quite sure how to fix it. I feel like my resilience has disappeared. I’m struggling to concentrate, I work remotely so stick on a happy face when I’m needed in work meetings but really I don’t care about work at all. I cannot seem to summon the energy to do anything but the most basic of functions.

Yes I tried this after becoming so sleep deprived I was almost hallucinating. I told the school not to send my kids home as I couldn’t do it anymore.
I got bombarded with social workers and the headteacher of my kids school, all talking to me like dirt, as though I was nothing but a nuisance and they just threatened to dump my kids with an abusive family member (despite there being a legal “no contact” order in place). They didn’t care, they just wanted home from the office. Any time I speak up and ask for help they threaten me with this family member, it’s psychological torture.

@Robinnohood i relate to every word you wrote, I had some counselling from the carers support centre where I live but sorry to say it wasn’t overly helpful. I don’t think there’s any way I’ll ever come to terms with the cards I’ve been dealt in life. I often wish my kids and I could all just slip away peacefully. The world isn’t a happy place for us.
I function and do what needs to be done but I’m robotic and not really present. It’s like being alive but dead at the same time.

I know I feel the same. I am burnt out and not even by the caring but the endless fights for services and essentials that my children ate entitled to. I have been waiting 14 months for my sons extra strong wheelchair to be delivered. He keeps destroying the old one and cannot go.out without it. They still have no.idea when it will arrive and complaining, nagging and arguing makes no impact at all. I am so angry at what has been allowed to happen to services for people with disabilities in this country . It is truly a disgrace the lack.of respite and support for families dealing with so much.

I’ve wondered if counselling would help but then think that even if I get the worst feelings out, I cannot change my life to how I want it to be. I think of all the places I’ll never see, the things I’ll never do and the anxiety and anxiousness that has come with raising children with special needs. I’m so over my life. In 6 years, my 12 year old will be 18 and what then?! I fear the small shreds of time I get to work will be over because where will she go. Outside of school, she’s either home or in her buggy being walked around a country park or swimming at the weekly Sen session because she can’t access anything else. Work feels pointless. I’m leading on a development day this week and I just can’t be bothered. I just don’t care. That’s probably the worst part of it all, life feels utterly pointless. Surviving not thriving and there’s not a damn thing I can do.

Does anyone else feel hugely isolated? It’s a real struggle to relate to others who have children with Sen as my 12 year old is at the severe end of the spectrum.

I’m thinking of everyone who is also in the same boat. This post has allowed me to be open when I can’t be this open with my husband nor family. I feel trapped and broken. I’m not the mum I want to be and my other children have suffered because I can’t offer them a proper life.

yes for me the isolation is the worst bit. I also have children that can't access much and I feel guilty about it but now I try to accept that all I can do.is care for all their needs and love them as best I can. It breaks my heart that they are missing out on so much in life and most of all it hurts that as they get older people care less and less and we now have v little in the way of friends or family who bother with us at all. That is why I am on here so much frankly. It is human connection and an escape.

Single parent of two autistic teens.

Surprised it's only 40%.

There is sod all support. You are blamed for the kids behaviour if you ask for help. Even if it's school shaking the pop bottle all day.

Exhausted.

People don't seem to care when you gradually drop out of life outside .

People don't seem to care when you gradually drop out of life outside

Absolutely this. There is a sense of relief when we can’t make it to things (and DS is only invited rarely as it is). It’s hard to accept and the rejection has made me withdraw from others who aren’t in the same boat, to save their blushes (and mine).

It’s a really lonely path and over time there’s no one checking in to make sure you’re okay. I think the isolation is something I’ve found the most difficult to come to terms with. I feel so disconnected with the world because my dd is so challenging. It feels like we don’t have a place in the world. In online groups I see people with kids local to us and although they have the same diagnosis, their child is accessing the world. They’re going to clubs, going out etc. I feel the grief of having to give up the life I hoped we’d have. Sharing the magic of Santa, going on holiday together, even something as simple as just reading them a bedtime story.

As life has gone on and as dd gets older, the pain and stress feels so much worse because I know it’s not going to get an easier if anything it’ll get worse because what little support I.e a school place will disappear. I don’t know about anyone but I feel really damaged and exhausted by it all.

I’ve contemplated giving up my job as I just don’t seem to be able to cope with things the way I used to. Mostly I just feel sad and on the edge of tears all the time.

@Robinnohood i agree, have tried counselling/mental health nurse etc but just find myself sounding like a broken record saying the same old shit and nothing ever changes. Having space to vent doesn’t really help at all.

i have such empathy for all on this thread, nobody else really gets it.

is anyone else absolutely dreading Christmas? It’s been hell for us the past few years, I’ve been stressing about it since about May this year. I don’t know how I’ll survive.

@theresabluebirdinmyheart Yes, I’m absolutely dreading it too. I used to love Christmas and was so excited about making it special for DS when he came along. Instead, from early Dec onwards we have overwhelming sensory overload, nobody can visit because it’s too much (for him and them!), and we can’t even watch a cheesy film because anything on the TV has to be DS’ special interest to avoid all hell breaking loose. DH just goes to work to avoid it so I don’t even have adult company.

I am feeling particularly rubbish today because over-tired DS smashed me in the face with a metal object and pulled out a handful of hair last night. I was driving at the time and thought I was going to crash the car. Today I have a black eye and my menopausal hair makes the bald patch obvious. I can sense the sympathetic side-glances from colleagues and although well-intentioned, it’s making me feel like shit. A couple of years ago I probably would have had a good cry in the loo, but I can’t even do that any more - it changes nothing anyway.

Sorry. Hope you’re all having better days than me! 💐

@Vinvertebrate yes it’s the disappointment of all the plans and dreams you have for Christmas when your child is born, trying to hard to find presents they might enjoy only to have them literally thrown back at you. I’m a single parent so have no adult company either, my daughter sits alone in her room with her iPad blaring and won’t engage or interact in any way. It’s so lonely, she doesn’t even sleep and never has, most mornings she’s wide awake 2/3am and goes all day. I have to sleep when she’s at school so I don’t even get time to do anything for myself.

I’m so sorry you’ve had a hard day, hair pulling is horrible, I’d genuinely take being punched or kicked over hair pulling or biting.

I genuinely question if it’s even worth going on most days, it’s the same endless cycle of pain, loss, fear and disappointment. It’s like I don’t even exist as a human being.
My wider family have no understanding of the situation, my mother pretty much acts as though it’s somehow my fault my daughter is disabled (it really isn’t).
Due to her toxic behaviour and constant criticism we went no contact a year ago but she is now harassing us and making malicious calls to social services. I don’t need this. My own mother is doing this to me. She wants to break me so she can get care of my daughter and take her disability money and carers allowance, I can’t go on much longer.

I am sorry. I truly am . Though I know it doesn't help.at all but I hear you and send virtual support to you and @Vinvertebrate . I so wish I had a magic wand to wave for all those struggling.
And your mother! Well I have no words for that situation other than I would console myself with chuckling thinking about what an almighty shock she would get if she did have to actually look after her granddaughter for any length of time. I hope you can both find some v small joys during the festive season at least x

I hope everyone is doing okay. Well as okay as they can be. I don’t know why but this time of year always leaves me feeling quite blue. I suppose it’s the thought of another year coming to an end and life just doesn’t change. My world gets smaller, my hopes and dreams have pretty much disappeared. Christmas is no different to any other time of year. It’s just another crappy day.

@theresabluebirdinmyheart, I’m so sorry. Your mum sounds absolutely dreadful. Can you go no contact? Or very low contact? I suspect if your mother did any care, she’d realise how bloody hard it is. I feel the same as you. As if I don’t exist as a human being now. I’m a passenger in my own life. I have very little control over anything. My dd even positions how I sit on the sofa. The demands and control are relentless. I said to my DH the other day, I feel like my life is a waste. It all feels so pointless and joyless. There’s nothing to look forward to. Another year passes and we’re closer to adulthood for both dds. The youngest at 12 is profoundly autistic so I don’t know what will happen to her. I suppose I’ll go back to being her full time carer and give up work (which I’m already struggling to do anyway).

@Robinnohood i have tried to go no contact, it took years of courage, she’s a very domineering person but she’s pretty much made life difficult for me ever since I cut her off.
My eldest is now 17, she’s slightly more able but will never be independent and I’m struggling with applying for guardianship, it’s so difficult and a legal minefield. I don’t even really want to be a guardian for another adult but what choice do I have?
I completely empathise, my son is profoundly autistic and will dominate the whole room and refuse to even allow me in my own living room. Or push you off a chair if he doesn’t want you to sit there. My daughter used to make us sit in the pitch dark when she was younger as she liked to turn the lights off and draw the curtains. It’s just soul destroying.

i absolutely take my hat off to you that you’re able to work throughout all of what you’re going through, even if I had care for my kids, I would be too depressed and mentally unwell to find and keep a job.

it’s the constant anxiety that what will happen to your children in the future? If I become unwell? When I’m old? They’ll never be able to fend for themselves and it’s a cruel world out there. It’s like that new mum anxiety when you have a tiny helpless newborn to care for but it never goes away.
This thread is the first place I’ve read other people voice what I feel inside, love to all of you x

My heart goes out to you and all other parents in this situation. I find this statistic unsurprising... I can't imagine what it must take out of you to do the care that you do.

Sending strength to you and all others like you. You are amazing parents and shouldn't feel guilty for having such thoughts xxx

Absolutely op it's often a lonely isolated thankless task.

@theresabluebirdinmyheart, I looked briefly at guardianship a while back and it looks quite challenging along with having to pay for the privilege of being responsible for another adult for life. We’ve just looked at wills and trusts and been quoted nearly £3k to sort this out. The future feels like it’s barrelling towards us and doesn’t look very nice at all.

I’ll be honest, I’ve found working really challenging. It’s only because it’s term time only and remote that it semi works as neither of the kids can access (even if there was any local Sen care which there isn’t). But it has pushed me to my limits. Most of the time I feel ill, stressed and anxious. It’s gotten worse as our youngest who is nearly 12 has gotten older. There’s no light at the end of the tunnel. I can’t bear the thought of leaving any of them especially the youngest as she’s so vulnerable. I’ll find if I’m out walking that I worry in case I get run over or I trip and hit my head. This constant state of anxiety.

Like you, I’ve found this lovely and rare thread where other people are also expressing how I feel. Sending love and hugs to everyone especially over this tricky season.

@Robinnohood
If you up children are approaching 18 you need to.look at POA as a matter of urgency because you will be unable to make decisions on their behalf without it. If they have no capacity it is even more crucial and you will need a deputyship. People assume that as next of kin you can make decisions but you can't . Not for a child or even your own husband or wife.

@flapjackfairy, they’re 14 and 12 at the moment so I’ve added to my list. It’s unbelievable the amount of stuff parents of children with Sen have to do and pay for. It feels like a never ending battle for things and is throughly exhausting. Post-16 feels like an utter minefield and post-18 just feels like you’ll be abandoned in this vast wasteland.

There's no such thing as a break with severely disabled children but just a shout out to say there are people out their who understand, reach out, I've been at the end of my tether, my dd is autistic and talking honestly helped. I work for a church and have been getting more and more severely disabled adults attending different activities, everyone is most welcome, and I hope that this helps you realise that you can talk to us about feeling so bad, we also do help with multi agency meetings etc as a personal advocate.

we have my dsd coming to stay who needs 24/7 supervision (assuming she gets discharged from hospital) she lives in a care home now as an adult. I can manage for 3 days easily but many of you have this the other 362 days of the year too

I completely understand where you are coming from I too have a non verbal severely autistic 14 but assisted dying ,no they can't make thst choice
Even i wanted to die it's not my place yo say my son should
We need more help to make our lives easier.

agreed
Merry Christmas everyone xxxx