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Which disability do you treat. - Carers UK Forum

Which disability do you treat.

For issues specific to autism / Asperger Syndrome.
75 posts
Hi everyone,

Hope you are all well.

Sorry I have not been around much but been horrendous at home these last few weeks.For now I would prefer to keep the circumstances behind it all private but developments these last few days have opened my eyes and various aspects I want to post here to see if anyone else has experiences they can share.

The gist of it is,my brother has hurt someone.They are doin ok now ( no medical attention was needed )but obviously there are consequences and it is what we have to face next week that is breaking my heart.As strong as I am,god only knows where I am going to get the strength from next week.I think I dont have any more tears left in me till phone goes and I have to explain everything from scratch again.

So,after this incident, we were told that a hospital admission for him was a necessity but,and this is where the fun started.

Emergency team from local hospital were called out ( mental team ).They said they were not equiped to take him as they could not deal with his autism and with his deafness,lack of communication would increase his frustrations.

Medical ward could not take him cos of the violence and again lack of communication.Even when we volunteered to cover 24/7 they could not accept this as his intimidating manner was a risk to other patients.

His severe learning diabilites meant its been so hard to try explain things in a manner which he can understands and his increased brain activity is affecting his epilepsy.

His consultant made a visit and after several calls a bed has been found for him on Monday in an autism unit at a hospital 30 miles away.We kept being told that this would be a short term stay and as a result we assumed this meant anything from 2-6 weeks.We have since been told by the Dr that we may be looking at a 3-6 month stay.

My head accepts that treatment is a necessity,a total overhaul of his medication needed but although hes 6ft 2 in tall,he is in fact a child.

Monday morning,we are getting a home visit by Consultant,GP and Duty Soc Worker ahead of his actual admission.Hopefully everything will be explained then.

How on earth can we as a family take him on Monday and leave him.Its not even here yet and I feel like I have let him down and let my mam down as I promised faithfully to look after him.

Does anyone here have experiences like this?
Can anyone shed any light on what I can expect come their visit on Monday?
Will we be expected to sign anything and if so, do we as a family maintain rights to bring him home?

I dont expect answers fully because each set of circumstances will be different but I would appreciate any comments/advice that anyone can share.

I know many a time I have praised ESPA,the organisation that provides his care ,but once again these last few weeks they have surpassed themselves.The consultant is theirs and its them who has organised all this with us every step of the way.As well as family going to see my brother,they are intending sending staff as much as possible especially to cover any communication issues.
To say their own staff are gutted is an understatement.They have had involvement in Roberts life now for 10 years and the attachments he has formed are many.To have a manager apologising for being unprofessional by crying in front of us,to have others crying too as they just want whats best for him,shows just how much loving care they do give.

Be strong everyone,be there for one another always.

x x x x x
Rosemary, don't you dare believe for one moment that you've let Robert down.

You have no control over whatever is happening to his brain at the moment and the only way to make sure his life comes back on track is to allow the hospital to do their thing - but keep an eye on what they're up to!

What a terrible time you and the family are having just now. You will get the strength from within to get you all through this together. I know its heartbreaking for you, but trust that your doing the right thing to help Robert. I shall be thinking of you all and will be keeping Robert in my prayers and also for you and the family to keep you strong.

Take care
Maryann x
Rosemary you have not let Robert down if that was the case you would not be there for him now as you have always been and that is all you can do at the moment is be there for him l have never been in this sort of situation so l cant advise you on anything, but your devotion to your brother and dedication in looking after him and his needs have always been paramount and that can be seen with every post that you have made on the forum all l can do is let you know l am thinking about you and your family and know you will find the strength to carry on and do what you have always done for Robert and that is the best that you can

Thinking of you and your family
take care
Rosemary, I've been away for a week on respite so just saw this are you doing ok?

Email me if you need to talk. Image
(((Hugs))) from my heart to yours.
marie x
Rosemary, I can only repeat what the others have said - there is no way on God's earth you have let Robert down and you know your Mam would tell you the same.

At this time in his life he just needs that extra bit of help from another source, you're doing what's best for him - how is that letting him down?

Keep your chin up girl, you'll all get through this - trust me.

Take care

Paula xx

Just a quick note to say that I'll be thinking of you all tomorrow..

Take care
Maryann x
Hi Rosemary

Like everyone has said, no way are you letting your brother down. It is very difficult to hand over care to someone else. But it sounds like you have a wonderful team of people there who care about Robert too. Trust and believe that everything will work out.
Thinking of you
Love Cheryl xxxxx
Rosemary, I know today is going to be hell for you, but remember we are all here for you.

Be strong, pet.
Hi Rosemary,

My thoughts are with you and I can not begin to comprehend what you are going through, but I know you will do what is best for Robert, so keeping your promise to your mum.

Keep your chin up...............I had an old auntie who used to say "Do whatever you want in life, but whatever you do.....do it with dignity"..............this particular auntie spent most of her time with her skirt tucked in her knicker elastic!

Take care
75 posts