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horrendous time need some hugs - Carers UK Forum

horrendous time need some hugs

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hi all , not so happy new year ,
my son has a brain injury, right hemiplegia following a stroke as a baby and autism , I have struggled all his life but he is now 20 and has lived in residential care for four years last year was horrendous the transition to adult placement was a constant battle and we thought wed found a great supported living placement , they sounded brilliant and said they could manage his behaviour , even have a specialist behaviour nurse on the staff . I have been living with him for over week , as when he got upset his carers all hid behind a door and his arm got crushed !!!!we have a great team withing social services and even commisioner was on board this week , and has a mental health nurse on board ( though hes just an observer really , i wouldnt let them section him again , but the brain injury unit wouldnt have him eith er to do a specialist assessment .

It was all i could do not to just take him home but I know for him its not the best in the long run, I have chronic fatigue and depression and anxiety and had just got a grant for a break HAHA ...

last week was a round of meetings i met so many people providers whilke being told we were to get out of the flat ..we are still here , and have got a new place fingers crossed he moves again ! next Wednesday .....his anxiety is so high and i feel so sorry for him . apparently i am a sandwich carer as care for my mum as well !!!!

well enough of that just wondered if anyone has any spare hugs going
thankyou vIRGINIA
That sounds immensely distressing and worrying. I know that there are quite a few forum members who have experience of caring for a young adult son or daughter with special needs, and I'm sure they'll be here soon to respond. In the meantime I'm glad you found this forum, as it is full of support and hopefully practical help and advice as well, and perhaps some reassurance too. From what I read here, making that transition from youth services into adult services is seldom straightforward, so I suspect you and your son are, alas, not alone in finding it a 'bumpy ride'. I do hope things can settle down, and he can find some peace and enjoyment, and that you can find a lessening of your extremely understandable anxiety about him.

You mentioned having to care for your mum as well. What are her care needs? Being a 'sandwich carer' can be the most stressful situation of all. (I'm my 91 y/o MIL's carer, but she is now in a care home for dementia.)

Kind wishes, at what sounds like a particularly difficult time in a not easy to begin with life! Jenny.
Hi Virginia, my son was brain damaged at birth, he has severe learning difficulties but only in some areas. He now lives alone, with carer support, however finding reliable carers is a huge problem. I have gradually worked through a variety of companies. They all promise the world but once they are actually caring, sing an entirely different tune. I do hope your next placement turns out to be what your son needs.
I've also been a "sandwich" carer - all four of our elderly parents lived nearby, all entitled to highest DLA. They've now all died, so at last I have time to myself, plus long term health problems, and on top of everything else, I was widowed.
I could also have been diagnosed with depression and anxiety, but in my case it wasn't really depression, just being constantly hacked off (to put it politely) at being unable to have a life of my own as I was always running around others. Now I can take better care of myself, and escape to the sunshine of Crete for two weeks, twice a year.
Hi Virginia,

Welcome to the forum. My heart goes out to you both.

I care for S he is 24 and has autism plus health problems. When anxious or unwell his behaviour can be challenging. He is very reliant on skilled, empathic support manage his anxiety and behaviour.

I strongly recommend your son has his housing needs met by a different agency to his care needs. This means should a care agency pull out/ give him notice he doesn't lose his home at the same time.

The challenging behaviour foundation is a great source of information http://www.challengingbehaviour.org.uk

My heart goes out to you. My 26 year old son has downs, adhd and autism which can lead to very difficult and odd behaviours. I have severe rheumatoid arthritis. I have been constantly let down by health, education, social services etc and family (what family!!). I have no friends but I have a lovely hubby and two other adult children who I rely on enormously, and often feeling very guilty for that. My son is quite happy at home but I do worry for the future. I can only imagine the difficulties, anguish and frustration you must endure as a parent. I wish you both well and you are in my thoughts.
So very very sorry for you,the stress of life seems to much doesn't it.I've been a carer most of my life,first my mum,and my husband for the last25yrs.this is my first day on the forem,and it has given me the comfort to know there are others out there who do feel for you.take care June.