Caring for three disabled children

I’m a mum of 7 (aged 10 to 16). Three of my children have disabilities, each with significant needs (their ages are 11, 16 and 16).

I have a partner, although he works full time. I’m an unpaid carer - often working 24/7 to meet their needs. He helps me where he can, but I’m having to do most of it on my own. I also home educate the two 16 year olds, as neither were coping in mainstream school and we didn’t receive help, support, nor understanding from the schools. They were both miserable and struggling. I took the huge step to de-register them both and electively home educate them. This adds enormously to my workload.

Recently, the DWP have asked me to complete all three childrens’ DLA or PIP forms, which I’ve been struggling to find the time to complete. I was granted extensions for the PIP claims, although with one of them, I was reduced to tears on the phone explaining to a manager why I needed another two weeks on top of the four I’d already been given. That was the point I realised I was struggling with the pressure of everything, and that’s when I knew I needed to reach out for help and support. To top this off, I have been feeling very isolated for a long while, which was adding to the pressures I felt.
I approached my local wellbeing service for help with overcoming my stress and anxiety, although my support worker suggested I try to find carer support groups, especially with how isolated I feel.

My mother passed away almost 4 years ago now (who was a huge support to me). My father doesn’t understand my children and their difficulties and he is very critical of me and my parenting of them - as if that’s a reason for their disabilities?!?!
I had friends which I lost due to my caring role taking up all of my time and energy, so the friendships faded. None of them understood my children’s difficulties and my responsibilities. When I would explain what it was like for the children, and for me, none could comprehend, understand or show empathy/support.

I was once a happy, confident, bubbly young woman who loved socialising. I’ve lost that slowly over the years. But it is something I am working hard on getting back… I just need to find the right sort of friends who understand exactly what I am facing every day and the battles and challenges that come with my children and their needs.

Whether I will find it here, I do not know… I just hope it is the start. I know so many others out there are facing similar or worse, so this isn’t a post to say ‘pity me’. I don’t need pity, just friendship and support.

Sorry for the long rant.
Take care.

2 Likes

Hi @Purple_Owl

Welcome to the forum.

I am carer to one (now grown up) with autism and related LD (plus other health needs) and I find that exhausting, so how you cope with 7 … the mind boggles.

I am a lone carer and also work part time. Well, my job is part time but I work 24/7 like you really, as after work the caring starts.

I’ve lost friends along the way too. The few we have left are the ones who do their best to understand S and his needs; though they have little real idea re what 24/7 caring entails.

On the forum, Roll Call is good for friendship and chatting about your day (over the garden fence type of stuff) and feel free to start threads like this one for advice and support.

Carers Uk also run various online events -

https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/online-meetups/care-for-a-cuppa/

and

https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/online-meetups/share-and-learn/

Hi @Purple_Owl, welcome to the forum. Sorry to hear that you are having trouble. I would suggest that you either speak to carers helpline as @Melly1 will suggest. Also speak to citizen advice as well.

Are you getting ANY help at all from Social Services?
Ask DWP to send a Visiting Officer to complete the forms. They should have offered this service, knowing you are struggling! I asked when my son’s PIP form arrived, my arthritis means I can’t hand write!

@Purple_Owl…hi, welcome to the forum. You sound like you have an awful lot to deal with. This forum is a good place to go to relieve some of the stress, let off steam and chat to people who understand.

Hi @Purple_Owl and welcome. Caring for one person is tough, but for three…on top of everything else…mega respect…

Obviously you’re welcome here and please join in as and when you can, but it may be worth looking for local support here: Support where you live | Carers UK

The more the merrier, I always say!

When. i was younger so busy caring, I found the local carers groups were full of older people caring for a dementia sufferer. I must have been the youngest by 40 years. I’d like to make an opposite suggestion, having a facial or massage! Time just for you to lie still and be pampered, focussed entirely on you and your body, being still and relaxing. It took me years to destress after an awful period in my life.