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.

Merry Christmas to all caring for disabled DC. I hope it’s a calm and peaceful time for you all xx

Merry Christmas to you all, my day began at 3am (this is not due to Christmas, my daughter just never bloody sleeps), she had gone on and on about opening her presents, I duly allowed her downstairs to open them, she ripped open two, didn’t care for them and has gone back upstairs.

She will refuse to interacts with me for the rest of the day. Christmas Day for me looks like sitting staring at four walls of living room watching mindless television.
Can’t even watch anything decent as I have no concentration and too tired. Can’t go for a walk to get fresh air. Can’t have Christmas dinner, my daughter is PEG fed and doesn’t eat so no point making it for one and sitting alone at the table. I have no friends or family.

One of the carers who helps with my daughter bought me a bunch of flowers , that’s the only present I will get, I felt close to tears when she handed them to me, it felt so alien to have someone think of me and do a kind thing for me.

as per the title of this thread I don’t think I can make it through 2025, another year of this is just such a pointless existence.
everything I try to do that’s nice for my daughter she won’t do it even when it’s something she asked for, she wanted to see the snowman live, I got us tickets then she refused to go.

All she cares about is sitting alone in her room in the dark on her iPad. All I do is sit alone in the living room, do her peg feeds, toilet her, bathe her and wish I wasn’t here.

Sorry for bleak post but I’m really disappointed after trying so hard, I’ve given my life up for her, I don’t know why i bother, i sometimes wonder if I even love her, she’s so unpleasant to be around. If she doesn’t even like your tone of voice because you’re tired or she’s trying your patience she will hit you or throw the iPad at you. So self centred. Doesn’t help I grew up with a toxic narcissistic family, i thought having my own family would be an escape , how wrong was I.

I understand OP. But the other side of the coin, as contradictory as it may seem, is at the same time having developed health anxiety as I just have to be here for them as long as I possibly can be.

@theresabluebirdinmyheart I hear you. I'm so sorry 💐xx

I know this doesn’t help practically at all but you’re seen and heard here, the endless drudge of life with a disabled child is relentless. Merry Christmas and I hope you get at least some snippets of joy and rest in your day xx

Sending love to you *@theresabluebirdinmyheart *and all on here and wishing you all a Merry Christmas.

Thank you.
Standing in my kitchen alone, bird in oven, Xmas music on, wine in hand.
H in sullen silence. (Stroke handicap a 30% person)
Why did they save him ? Shouldn't the doctors just leave these, senior, Major stroke patients to end their lives as God intended....,
Back to wine

I have just seen this post and wanted to acknowledge you and your feelings. I am so sorry that things are so hard for you and your child. I know it doesn't help but I hope you have found at least some small pleasures in the endless drudge and know that some of us understand xxx

@theresabluebirdinmyheart
I just wanted to encourage you to insist, against despair, on carving out space for yourself. Whether that is forming new relationships, new friendships, new hobbies, new interests or obsessions. I know they would have to be formed and fought for in tiny slivers of time between care duties. But you have a right to that private space, that secret joy—even a prisoner can reserve that right. I think of some famous prisoners: Primo Levi or Nelson Mandela come to mind. I think also of this quite from Camus (quoted to me by an acquaintance who had suffered terribly from abuse by her mother)

"My dear, In the midst of hate, I found
there was, within me, an invincible love. In the midst of tears, I found there was, within me, an invincible smile. In the midst of chaos, I found there was, within me, an invincible calm. I realized, through it all, that... In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there's something stronger - some-
thing better, pushing right back."

Something that she also said to me as she ended up caring for her extremely abusive mother when she got dementia “It helped to forget I was in that daughter’s relationship. I did what I did for her out of compassion and necessity for her as though she were a stranger. Then I didn’t mind the lack of gratitude or reciprocity or even recognition.”

I hope you’re all doing okay. I think this time of year is really hard and painful for so many of us. Watching everyone else enjoying the festive season whereas for most of us it’s just more relentless hard work without the joy of the excitement.

Has anyone successfully navigated feeling resentful towards a DH/partner? I’m getting so sick of carrying the burden of care alongside working. DH buggered off to the gym for over two hours today and then is surprised that I’m hacked off as I’m left caring again. He typically does his hobbies 3/4 nights a week. Plus doing most of the stuff in the house.

that does sound tough and yes the relentlessness of it all does get to.you for sure.
I have hosted for extended family which I absolutely loved and it didn't go too bad but now I am paying for it . I am wiped out and have succumbed to a cold which I never do normally though the same thing happened last year. That adds extra stress because our medically fragile child is so vulnerable when he gets ill.
We have 2 children with complex needs and the older one has gone off the rails now this week( autistic, challenging behaviour etc ).
I couldn't do.it without my dh and today he is keeping it together whilst I moan !
One thing I would say is that you need to negotiate short breaks to stay sane. My husband also loves the gym so he goes a few times a week and I get time to myself to go.out with friends or my daughters and do what I want. Does he support your need for respite ? . .One thing I have learnt is that you really have to try to take time to do little things that refresh you because in my experience no one else is going to take over so you can rest. it is v isolating and a big burden so don't neglect your own mental health . It is not being selfish to ask him to support you.by taking over. It is a matter of survival really. X

Has anyone successfully navigated feeling resentful towards a DH/partner? I’m getting so sick of carrying the burden of care alongside working. DH buggered off to the gym for over two hours today and then is surprised that I’m hacked off as I’m left caring again. He typically does his hobbies 3/4 nights a week. Plus doing most of the stuff in the house.

Not “successfully navigated” but definitely feeling resentful here. DH works crazy hours and does nothing with DS, which he feels entitled to do as the main breadwinner. I also work FT and do all childcare outside work hours which is not easy, because DS is massively challenging. 2025 just feels like another year that I have to endure, with minimal support and relentless demands.

This year, I am planning a theme park trip for DS which obviously involves accessibility research and planning as well as acclimatizing DS in advance to avoid meltdown. It’s just occurred to me that in eight years, DH has never taken a day off work to care for DS, much less planned a trip with him. That’s pretty bad, isn’t it?

Happy new year to all those reading and following this thread.

@Vinvertebrate we do alot of theme parks with ds as he likes the sensory aspect and there's no real concern if he makes noise etc. If there is a particular park you're looking looking at I may be able to tell you a few of the bits we've found out through trial and error although I understand all children are different and what suits or may not another.

We goto Alton Towers regularly and have been to Legoland , Chessington and Paultons quite a few times.

Thanks so much @Perzival - we are thinking of visiting Legoland Windsor for the first (and probably only) time. I think I can get a carer’s ticket with proof of DS’ DLA, which is great. I’m just not sure how DS will cope with long queues and need to look into what (if any) alternatives might be e.g fast passes.

I’m also weighing up whether we should stay overnight and go two days running to ensure we get on/see everything. It’s not cheap, but I’m worried that 5 hours on the motorway in one day will make DS’ head explode!

@flapjackfairy, well done on hosting and sorry to hear about the cold. I hope it improves soon. It must be really worrying if you’ve got a vulnerable person in the house.

I probably do need to be more selfish and carve out time for myself. Typically in the week he’s at the gym two nights a week, coaching football for one evening, then darts on another evening. I don’t work Fridays but usually end up using that time to walk the dog and catch up on chores. He doesn’t have an issue with watching the kids it’s just the mental load all sits with me even though we have access to the same information. I’ve thought about making him a list but often it’s just easier to do it.

I think mainly I’m just massively burnt out and exhausted and although I seem fine on the face of it, I’ve spent 14 years of my life caring and the reality is that it’s likely to take up the rest of my life as well. I seem to be mourning my freedom. I can’t seem to get out of this depressive rut.

I'm not sure of the age of your ds but mine is nearly 15 and still enjoys Legoland although the rides are all aimed at much younger children.

Merlin who run LL change the way they give alternative access to te disabled (Ride Access Pass (RAP)) quite often so how it works etc may vary a little when the season starts.

https://www.legoland.co.uk/plan-your-day/before-you-visit/accessibility/theme-park-accessibility/ride-access-pass/

Use this link to register for the Merlin Access Card. They use Nimbus access card but you still have to register for Merlins own pass after you have a Nimbus Access Card (if you want you can pay to have a proper access card for three years as many other organisations use it too, the free version will just work to get the Merlin Access Card). You need the cant queue symbol.

When you're registered for Merlin Ride Access Pass you then have to book the RAP for that day. They've started limiting how many people can have a RAP on each day in the park as the RAP queues were getting as long as normal queues and defeating the object - I'd be tempted if you can to go on a school day.

In regards to carers, my ds requires two to go out safely. I git his paediatrician to write a letter saying this and paid for the full access card so he has the +2 symbol rather than +1. Merlin accept this and the letter together and give him two free carers entry (he has a merlin pass as we live quite close to the Trafford centre where they have a little legoland anda sealife that he loves- I pay for this out of his social care budget). I'm sure they would give two free carers for single entry too but I'll have a look in a min.

When you've selected the date you're going on the ride access pass link so you have the access for that day you then goto a website on your phone and book the rides one by one. It blocks you out after from booking another ride fir the queue length. It also stops you from booking if too many people are waiting at that time so rides may go on and off depending.

When you goto the rides they have a separate entrance for ride access users but sometimes they mix with paid for fast passes.

It is a faff to sort out at first but quite straight forward when you're there. The skylion ride had a different way of booking RAP to make things more confusing. They release rap tickets at set times during the day and it's like fastest finger first to get them.

If you can go on a school day, I'd do that for ease.

Most of Legolands proper queues are wheelchair accessible so you need thesymbol on the access card that says you can't queue as well as or instead of the wheelchair symbol.

My Asda shop has just arrived but when I've sorted I'll pop some pics on of all the diff cards as that'll hopefully help to make my ramble make more sense.

Pics of the two diff cards you end up with (we paid for the full access card).

Link for info on carers:-

https://www.legoland.co.uk/plan-your-day/before-you-visit/accessibility/tickets-and-bookings/#:~:text=Disabled%20guests%20who%20have%20a,the%20second%20carer%20is%20required.

Yes, I've thought about it many times.

But as a lone parent, my child would then have no one.

Thank you so much for that @Perzival - so useful for us. I will have a read.

My DS sounds similar to yours in that he prefers rides that are “younger” than his age. He seems to struggle with proprioception if they move too much, but loves the sensory side. He’s also a Lego nut, like many autistic kiddos, so I’m hoping there is enough to keep him occupied.

@Frith2013 sorry to hear that, I didn’t want to read and run. It must be so challenging as a lone parent. (It’s hard enough with a useless co-parent like DH.) I found re-reading this thread helped over Christmas - there are quite a few of us in the same boat. 💐

oh yes the mental load. Good as my husband is I have to organise everything and tell him what needs doing etc etc. When I go out I have to leave lists and all meds prepared etc . I can't imagine the luxury of just popping out the door on a whim . And I so identify with the burn out ! it is brutal at times. .One thing that does help me is to not think.ahead . I try to just live in the day . I get too overwhelmed otherwise. And I don't think too much about the future . Who.knows what might happen for good or bad.
I hope you manage to find some small gaps in your days to recharge. I so wish we could all get together for a cup.of tea and a piece of cake in real life . It would be brilliant to meet people on threads like this in real life for support. I guess this is the next best thing. Somewhere to vent to people who understand the challenges. x

I’ve found this thread a god send. In real life the people we’ve encountered locally obviously have children with disabilities but they’re able to access the world. I’m sure they have their fair share of challenges and life isn’t easy but they’re accessing clubs, going places, visit friends and it seems so far away from the world I live in. If our youngest dd was like our middle child who has the same diagnosis although life wouldn’t be easy it wouldn’t feel so hard.

One of the biggest challenges I’ve found is I’ve lost myself. I’ve gone from being a person to a carer and although others don’t see it, I feel it. I’ve lost control of most aspects of my life. I work the job I do because there’s no way I could easily get anything else as I need remote and term time only. My DH and I take it in turns to take the other kids out as the youngest (12) can’t go (won’t wear weather appropriate clothing, hates going out, has no interest). I feel my life has gone and all I’m left with is a prison sentence because being a carer is forever. She’s 12 now and it’s unlikely she will change massively. This isn’t a phase. This is our life now.

@flapjackfairy, I took my eldest out yesterday and it was lovely. And it felt so easy in comparison. It just feels very hard to get out of the mindset I seem to be stuck in. I look at other people out and about and it makes me feel so sad. Sad as well that the tiny specks of joy are then sucked away by returning to normal life.

I wish we could all meet up for coffee/tea/cake as this thread is such a brilliant support and such a life line for me as these last 6 months I’ve found really mentally tough. I feel like we live in the shadows really due to how my dd being autistic affects us all as I struggle to find people in the same boat.

Sending you all love and tea (or your beverage of choice).

thank you for your virtual tea. V much appreciated!
You have probably explored all.options but are you eligible for direct payments at all ? If so could you use it to get carers to stay in with your kids whilst you do some normal stuff ? I know it is only a miniscule bit of normality but it does help.
And I so understand the feeling of having lost yourself. I feel like my children are invisible to the outside world and we also are as a result. Living in the shadows describes it perfectly.

@flapjackfairy, we are lucky to get direct payments but we can’t find a carer. We did try a Sen session 40 minutes away where they have staff and your child could stay and play but she screamed through the entire session and wanted to leave. She doesn’t really like doing anything so we probably need someone at home. I try suggest to DH that we try that Sen session again but he didn’t think it was worth it.

Feels like a never ending battle doesn’t it.

Hello all, hope you’re all holding up on this 471st day of January! 😂

I have applied for DS’ Nimbus access pass @Perzival so thank you again for the info above. I uploaded DS’ DLA letter, diagnostic and OT reports which refer to his autism and dyspraxia and various sensory conditions. I’m conscious that the reports are a little bit old now, but we get really poor care - and zero contact - from the pediatric service so can’t exactly just pop in and ask for another letter! We’ve not been seen for over a year, but we’ve got an appointment with a new consultant next month, so at least I can request an updated report. Just waiting to see whether we can book a night or two at Legoland in Feb half-term!

Glad you're getting sorted, I'm sure they understand that all services are overstretched, you won't be the only parent like that. Just make sure you get the queuing symbol, +1 or +2. A friend told me that Merlin give the access pass with the wheelchair symbol too.

After you have the nimbus card, you need to apply for a merlin card and then book the RAP. They do get booked up in advance. I'll see if I can get a link for the the booking so you can see what availability Is like. They don't guarantee rap even when you stay in their hotels so best to get that before you book x

I hope you all have a great time xxx