Parents, carers and disabled parents
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Who cares for the carers

JimJamsJimJams Member Posts: 175 Listener
Just another reminder to all the carers, make sure you have not let your me time slip, I know I have, I am starting to take one night out a week again, go window shopping, walking , or sit in a cafe and read a book, remember and do something for yourselves. I find I cannot commit to anything regular but I will try harder.


  • AlistairAlistair Member Posts: 104
    Don't know where all you guys are from, but I found a local charity who put me it touch with 'Kiloren' who provide respite for cares. My daughter's social worker has approved three nights respite and so I'm having some ‘me' time in London. Not really sure what to do! Any suggestions?
  • TeresaTeresa Member Posts: 24
    Have you had your break yet, Alistair? Don't know where your staying in London, but there's always live music or comedy. A film, or a gallery? I hope you have a relaxing, re-energising time.
  • AlistairAlistair Member Posts: 104
    Thanks, I had my little holiday. I spent three nights in a very comfortable house in Hammersmith (not the most exotic location! But very nice). I went to the V&A and saw a really inspiring exhibition, ‘The Power of Making', basically about the healing effect and empowering quality of being creative.
    I went to the British Museum and had two very enjoyable nights with my eldest son. And I met some lovely people and feel like I've made some new friends.
    Mind you I did pay for it! Endured a weekend of very challenging behaviour. Not all the time, but even two or three hours on your own is hard. I imagine others experience the same?
  • JimJamsJimJams Member Posts: 175 Listener
    Holidays are not easy, taking away the unknown and unexpected of it all might help, I show photos, social stories in the weeks running up to a break away, it helps alleviate the anxiety of the unknown. Always have with you a pack of rewards, bribes whatever it takes to try and avoid a challenging response, I know its hard , stay strong.
  • Helenx3Helenx3 Member Posts: 17
    Who cares for carers!!?? In my experience - noone! Coping on our own is very hard and i totally understand Alistair's comment even if you do manage a break the behaviour afterwards makes you wonder if it was worth it, i find by breaking their routine and having some me time results in harder work altho we desperately need a break. I constantly feel i have to keep healthy as what would happen if i became poorly???
  • JimJamsJimJams Member Posts: 175 Listener
    Helen try if you can and get some respite support from local carers groups if you have any, they offer befrienders and baby sitting services, if you have any family tell them how you are feeling and ask for some help, maybe someone familiar would be less of a routine upheaval.I know how hard it is and the pressure involved to always be fit and healthy. I try to make my son more flexible and adaptable to change to prepare him for the time when i am not around. It might be hard each time but should get less difficult the more you try and you are also preparing your child for the future. Hope this has helped in some way good luck
  • Helenx3Helenx3 Member Posts: 17
    Hi everyone and Marie thanks for your reply on confrontation aswell. Had another terrible weekend with the bullying kids to the stage we had to look ourselves in our own house before a kindly neighbour had very strong words with 3 boys. They did then come and apologise so hopefully things might get better.
    I have 4hrs of support a wk have no family or partner so basically in those 4hrs split into 2 x 2hrs i have chance to have a bath, make tea and sometimes do the required paperwork needed to get the 4 hrs support. My son is very sociable and always active the problem being that there is just no other support, no groups round here. There is never a let up. Had a nightmare food shopping this afternoon with him shouting, swearing and hitting me, the looks i got i felt like curling up in a ball but carried on regardless putting on a calm smiley face, life goes on eh!
  • Helenx3Helenx3 Member Posts: 17
    whoops that meant to say - lock.
  • HeatherHeather Member Posts: 171 Listener
    Hi Helen. 4hrs a week? That surely isn't enough? Ask your GP, social worker for a new assessment. Where abouts are you? Perhaps other Netbuddy users will have some clubs and respite ideas in your area to help you? And don't worry about unsociable behaviour in supermarkets....mine got banned from the library after knocking an entire book stand over! lol
  • toasttoast Member Posts: 46 Listener
    Helen - thats awful about the bullying. So sorry to hear about that :( Have you reported them? should be taken seriously as a disability hate crime. Where abouts in the country are you?
  • Helenx3Helenx3 Member Posts: 17
    Thanks for your replies. I have been led to believe im lucky to get 4hrs support. I will try and investigate more it certainly would help as im finding as my son gets older he really doesn't want to be spending his time with his Mum! He has never watched TV so its hard to constantly think of things to keep him occupied.
    The bullying is still going on and im very scared of making things worse but guess im going to have to do something. You guys have made me realize its unacceptable, thanks for that. Being on my own means i dont have anyone to bounce ideas off and feel im a paranoid Mum so thanks for the encouragement. x
  • JimJamsJimJams Member Posts: 175 Listener
    Helen so sorry to hear you are still having problems. Let the police know your situation and phone them every time you get any hassle. Go to the boys parents and insist they deal with it. remember you are not alone, dont give up.
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