Stressed Disabled Parent

char1

Hi everyone I’m new here, I’m basically on standby for a kidney removal it’s been nearly 3 years of going back and fourth to two different hospitals in taxi as I’ve been advised not to go on public transport. I have a server Autisic daughter who’s lashing out on me, I’m constantly living on painkillers and can’t work. I’ve tried to get PIP but they’re saying I’m not sick enough, I will be living with one kidney after the operation. I just need some kind of support. Family members are getting tired cause not only they’re helping with my autistic daughter they’re supporting me too. Please any advice will be helpful 

janer1967

Hi and welcome 

I would suggest you self refer for a care needs assessment via the gov website 

A ot will come put and assess your cars needs and make a report and recommend care you and your daughter need and put this to the correct services 

char1

Thank you kindly cause I’ve join blue bird care but I wanted it to start after I had the operation but I definitely think I should start this process sooner, thank you 

Tori_Scope

Welcome to the community @char1 It certainly sounds as though you've got a lot going on at the moment, which I can imagine must be very difficult to cope with all at once, so thanks for reaching out to us.

As Janer1967 has said, it does sound as though you could benefit from some additional support. Do you know how to refer yourself for a needs assessment? 

In terms of your financial situation, are you in receipt of any other benefits at the moment? Did you appeal your PIP decision at the time? 

Are you and your daughter getting any support regarding her autism diagnosis? Is she at school?

char1

@Tori_Scope yes my daughter is at school but it seems like they’re not doing anything much for her atm like activities everything they’ve offered her is very much online and her social worker has only offered her out door activities when they know that I can’t walk and cause of my different medication I can’t drive either. 

I got assets with bluebird care they’re careers who help around the house and help you too but I thought that I would contact them once I had the operation. But whilst I’m waiting my situation is deteriorating to the point my family and friends have to help me in and out the bath cause due to maintenance I can’t use my shower.
My daughter isn’t getting much support and as I’ve got sicker her behaviour has changed a lot. She’s 15 and doesn’t want to wash and dress herself or brush her teeth, I’m not well but I still have to be on top of her with these things. She’s forgetful and at times she plays on it cause she doesn’t want to do anything. She can lash out and hit me and it’s very stressful. Luckily I have support from my family and her dads side as well without them I honestly don’t know where we’d be. And she eats a lot doesn’t know when she’s full and constantly crying for food even when she’s had two plates of food.
Maybe it’s cause I’m not well I just find her more challenging than usual but her story telling and lies doesn’t help my situation. 

I’m in the process of waiting on ambulance cause my condition worsen overnight hopefully they’ll be here within 3 hours.
Just want to say thank you for your advice very much appreciated.

Ross_Alumni

Hello @char1

Welcome to the community, I'm sorry to hear about what you're going through, you certainly have a lot on. 

Is there any way you can bring forward the assessment with the care company if you are finding things difficult at the minute? Have you discussed it with them at all?

I'm glad you have support from family, but it might be worth speaking with your daughter's GP about her behaviour to see if there's anything that can be done. Have you spoken with your own GP about the situation? It seems as though it is having an impact on your mental health and they would be a good person to speak with about that.