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Johan Member Posts: 8 Connected
Hi, my name is Jo. I have a 12 yr old son with cerebral palsy, epilepsy, severe learning difficulties and pretty much paraplegic. But he is happy and generally healthy, for that I am grateful. It’s not him that’s struggling, it’s me. I have always been so strong and practical about life and being a parent/Carer but just recently I find it hard to get through the day without crying. I lost my mum last year and she was my world as well as my friend and support. This obviously isn’t helping but I feel like I’m grieving for her and for my son. I haven’t really got anyone I can just talk to and it is suffocating. My sister lives 8000 miles away and she is a busy business woman so I don’t like to burden her with my mundane stuff. 

I think i just just want to know I am not alone and other parents/carers feel this way. 


  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Neil2017
    Neil2017 Member Posts: 155 Courageous
    Hello @Johan
    Great that you’ve joined the community.

    The ‘joke’ in my house as I’m currently living with parents is who’s cares for the career! We say this because both my parents have hearing loss . I have sight loss. And my father is on kidney dialysis. 

    Yep it can be frustrating at times because I can’t see some stuff despite having some useful vision. They can’t hear stuff so volume goes up on tv and radios are everywhere!

    I love them to bits as they’re my parents and have supported me so much. But it is frustrating at times and I is probably the other way round to!!
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Johan, and welcome - it's great to have you here. Do get involved within the community, and let us know if we can be of any support or assistance. At the very least, I hope it helps to know that you're not alone.
  • Chaoskay
    Chaoskay Member Posts: 74 Courageous
    Hi @Johan
    Do you have anything like Homestart in your area?  It's a group that specifically aims to support patents who are struggling.  They have volunteers who commit to visit for a few hours a week to just help out, whether that be just by talking to you or even simply doing the washing up maybe, so you get a break.  They helped me a lot when I was really struggling with my health and trying, but not coping with, my autistic son.  
    I know you say your sister is busy, but sometimes people don't know if you need help, so they don't offer.  I know you don't want to be a burden, but perhaps ring her and hint that you're struggling and could do with a chat about what you're going through.  If she's not willing to support you, then at least you tried.  
    The hardest thing about being a full time carer is that it can so easily isolate you because your days are filled with looking after someone else, being busy, being practical, being strong.  Snatched conversations with GP's and health care professionals aren't fulfilling friendships, which is what you're missing.  
    Could you spare the time to get to your GP to find out about local support groups or do you think it might be helpful to see if anti-depressants help?  Crying every day is a clear indication that you're fighting to keep your head above water, some people are wary of 'tablets' but they can help some people a great deal.  I know they've helped me anyway.
    Let us know how you get on and please do seek help from your Gp.  I know how hard it can be to make a simple phone call sometimes.  Admitting you need help is a very brave step, now you need to move on just a little bit more and actively search for it.  If you Gp is no help, let us know and we can try to find other avenues that will offer support.  
    You have to look after yourself so you have the strength to carry on.  
    Kind regards, K

  • Johan
    Johan Member Posts: 8 Connected
    Thank you everyone for your kind words of welcome and help. I am just waiting for an appointment with a lady from my sons school who may well know of Homestart or similar, and I will let you know how it goes. I have thought about my gp and am just building myself up for an appointment with her. It is very thought provoking to hear situations from the other side and I think sometimes I forget what it must be like for him. Thank you again!
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    How are you getting on @Johan ?
    Senior online community officer
  • Johan
    Johan Member Posts: 8 Connected
    Hi, it’s funny that it is a year ago almost exactly since my last out reach. Since then nothing has happen d with regard respite but I am in the system. 

    It it has been a bit of a snow ball. My boys symptoms have chang d and we can’t get to the bottom of them which has lead to a lot of frustration and upset. I feel a bit on the edge with it all. I am a strong person but even I am gettting worn down. He is permanently sickly looking and tired. It’s saturadayafternoon and he has fallen a sleep in his bed.? my heart breaks for him. ??
  • frickchick
    frickchick Member Posts: 8 Listener
    I can’t believe it’s been a year and still nothing. It’s so isolating being a parent and a parent to a disabled child is even harder! I hope you do eventually get something.
  • Johan
    Johan Member Posts: 8 Connected
    Thank you Frickchick! I hope so too. In the meantime I have sent a letter to his paediatrician asking for a referral to a neurologist so fingers crossed I can get some answer there.
  • frickchick
    frickchick Member Posts: 8 Listener
    I hope you get what’s needed for your boy! It’s so hard isn’t it! I’m constantly trying to sort things out for my boy and running around to get to appointments, it really is draining at times.
  • Johan
    Johan Member Posts: 8 Connected
    Thank you! Are you doing ok??? How is you boy! 
  • frickchick
    frickchick Member Posts: 8 Listener
    He’s doing ok, I thinks it’s mostly me that’s affected by it all ?


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