Things I found difficult when I first started caring

The change in my routine was pretty bad as my brother needed help every day in all areas of his life.

Being responsible for a disabled and vulnerable adult who wanted to make his own decisions, but they were not good for him, is quite difficult to negotiate as he took whatever someone said to him as truth. I do not know how much money was ‘borrowed’ but never paid back.

I found it very frustrating to get my head round the Social Services system to get help for him. Eventually I managed to get to get a Social Worker who was helpful and we got the personal care my brother needed. Having been told I could phone the Social worker if I needed anything les, when I did phone I left messages but he was never there and I never had a reply. Eventually someone answered the phone and said you didn’t have a routine Social Worker but had to go through the system again. I was furious, wasted weeks of time, money on phone calls because the system had changed but no-one told me.  Things like that are so frustrating, and there was no-where to get any help.

I found the responsibility of caring overwhelming as he needed so much care, but no one else was bothered or even asked how I was getting on – it was a case of out of sight, out of mind.

Having to take his letters filled with jargon and explain them bit by bit in simple terms is an arduous and time-consuming task.

What has helped you overcome some of those issues? E.g. support group, sitting service, help with transport/support services you’ve accessed

I tried a support group once – and that was enough. I didn’t want to hear about everyone else’s problem but needed some positive information.

I have accessed a charity which helps with transport on a Wednesday morning, but when the man’s car broke down they could not offer a replacement.

My brother has a carer to help with personal things such as shower, clean teeth, shave, cream hands, but it is only 1 hour a week (2 x 15mins and 1 x 30mins). At one time he had a cleaner (via Social Services) for 1 hour a week but I had to stop it as the man did not know how to clean anything and used so many excuses as to why he could not do things (wasn’t allowed to dust in case he broke something, could not wipe the doors down in case the door slammed, could not do anything above his head nor below his knee – that left extremely little left!).

Despite the little bits of help he gets I still have to go round every day, prepare and  cook his food, and as he cannot go out at all unless someone takes him it means I have even more caring to do. I tried to get some help and asked for someone to take him for short walks, but no-one wanted that responsibility so it is all left down to me to keep him mobile.

What would you tell yourself if you could go back in time?

Find time to do the things you love doing, you are allowed a life! Maintain friendships and evenings out.

What are your thoughts on emergency planning?

When faced with the Emergency Plan document you might feel daunted as you usually have to fill in a whole sheaf of forms to get allowances or help of some sort, and this fills you with dread!!

Don’t worry, it’s not that bad! Yes, it will take time, but I found it was really worth it and took away the worry of what would happen if anything happened to me.

I slowly ploughed my way through the form. I pondered over each question before writing it down on spare paper (then I could add or subtract words when I read through it later before committing it to the form)

Contact Details – Always make sure the ones you choose are willing to be contacted and also that they will help with the practical items that occur.  In this space you can also put down if certain family members / people are not to be contacted.


Names and phone numbers of people who helps with care, lifts, etc., is a good idea. Having put his daily routine of when he is out doing other activities I found saying when he was at home makes it clear to anyone else .


State if someone else needs to be present when any official visitor (Social Services, Housing officer) attends. Salesmen are a nuisance as they can convince my brother he really needs a £5,000 mobility scooter when he has no-where to put it and cannot control his hand properly. If you have to take charge of bank cards, etc., then make sure people know where you keep them or at least which bank they are from.


Remember things like what food they like or dislike, what needs to be cut up or mashed. Can they open tins with can opener or ring pull, or neither.  Think about setting heating controls, window cleaners, if anyone else has house keys, etc. Make a note about where household linens are kept (and who washes them), does the person need help with birthday cards and presents, writing letters. Where are all the official papers kept (bank statements, Medical Forms, rent book, insurance certificates, passport, Power of Attorney documents, etc. ) Note where receipts, cheque books, are kept.