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Sibling help...

livliv Member Posts: 16 Listener
edited May 2014 in Parents and carers
I am really struggling with things at the moment and wondered if anyone had experienced similar feelings and how they coped... We have twin boys who are nearly 5 and one of them has quad cp. He has no independent movement and relies on an adult for everything from eating to playing. He does have good communication and his language is coming on really well, although not always clear to those who don't know him, at other times it is brilliant. He is in mainstream school with his twin brother and so far so good...he loves it and the teachers are brilliant with him. He also doesn't sleep very well which has a huge effect on family life as we seem to sleepwalk from one day to the next!
Things are up and down a lot and we seem to manage quite well however I have been feeling increasingly stressed and down recently ( I do take antidepressants) and it is really affecting our family. My relationship with our son who is not disabled is going from bad to worse, I can't seem to do anything right for him. I just seem to feel constantly angry towards him and he just irritates me all the time. I just feel dreadful even saying these things....he is just so difficult to be around and I just dread it now. I feel so exhausted and down with all the things that my disabled son needs that I seem to have nothing left for anyone else, including my partner who is a brilliant hands on dad. I just want to run away.

We have a few hours of carer help every week which is a help however it seems to exasperate my other sons attention seeking behaviour to the point where I now dread that too. There is also so much organising to do for it all to work. How can I find the energy and compassion to try and heal my relationship with my non-disabled little boy? I know he needs me but I can't seem to reach out to him....it's like there's an invisible wall between us.
Their dad works shifts which doesn't help and means that routines can change a little from week to week. Going out is getting harder as I struggle to lift my little one into the car etc and by the time we're organised to go out I just want to collapse....it's all too much. I am desperate to find ways to ease the stress and give my family as normal a life as possible......
Then there's all the fight for equipment...long waits.....hospital appointments, home assessments......arghhhhhh!!!....will it ever end!!!

I know I can't be the only mum feeling like this, why is it just so hard???

Replies

  • gigglersmumgigglersmum Member Posts: 7 Listener
    Hi Liv

    I only have 1 child so can't offer much practical help but I saw your message and just wanted to send you a virtual hug and tell you not to be hard on yourself because your feelings are very understandable. You are not the only Mum to feel that way! Even though I'm only coping with 1 disabled child I often feel exhausted and exasperated and furious that things seem like a never ending battle, so it must be even harder with 2 children. There are some other Mums who use this board who have twins so I'm sure they will add in some comments soon. I don't really know what to suggest. I guess the sleeplessness must be a real challenge & maybe the biggest problem, because its pretty impossible to cope without sleep. Is there any way for you to get more support at night so that you & the rest of the family can get better rest? I think you can use Direct Payments from the council to help cover costs of a night carer (even if just for a night or 2 a week).

    http://www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/Directpayments.aspx

    Do you have a cleaner? Anything that you can outsource to help take the pressure off you a bit and give you a bit of time to yourself to do nothing seems essential (again I *think* you should be able to use Direct Payments to help with the cost).

    I have no experience of multiples but would it be helpful to create a regular window of time that you spend just with your non-disabled son? Perhaps the time you have the carer could be time that you spend him - and maybe if there was a regular activity that he could go to with you that was just for him it might help him feel he is doing something particular with you & it would help the bonding & stop him playing up in that time? (swimming lessons? karate? anything like that, with a little treat afterwards - if it was a swimming group then you could also sit and watch and applaud him from the sidelines, which is more restful than actually taking him to the park or similar).Maybe that is a bad idea because I don't know about how to manage 2 children with different needs but I guess I'd try something like that.

    Sorry if this isn't very useful. But I didn't want to leave your message unanswered. I'm sure January doesn't help either! Facing a new year of appointments is always horrendous.





  • maryholmesmaryholmes Member Posts: 8
    Hi I am going through the same! I have a 2 yr old 3 p.5 stone little boy with quad cp and dsystonia and a 2 month old baby girl able bodied no disabilities who has feeding problems as well and my partner been off sick to help me care for Zac our disabled child as I has a c section... You and me need to chat!! That's all I can say, I am going through exactly same feelings and issues as you x
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