Diving In

[Godrevy]

Hi, I'm diving in as I joined this morning and they say the first post is the most difficult one.

My husband was diagnosed with Primary Progressive Aphasia about four years ago, though he had been having problems for some time before that. Now he can't talk at all. Over the last couple of years he has deteriorated more and the consultant (why did I have to battle for a review??) thinks he now also has a condition similar to Terry Pratchett's Alzheimer's. He can't do much at all - even simple tasks like putting a lead on the dog, unlocking a door or working out how many socks he needs for his feet are just beyond him. But I am lucky in that he is still 'here' to an extent.

He is now 61, I am 58 and would like to have kept on working but with the care system as it is and the amount of support he needs, that is just impossible. Equally, it seems impossible to manage financially if I don't work. I'm trying self employment but who knows?

My GP has prescribed anti depressants for me but said they may make me feel worse before I feel better. I dare not take them for that reason - I can only just cope now, if I feel worse the whole lot could go belly up.

[bowlingbun]

Hi Godrevy,
Welcome to the forum. If finance is a problem, it might be worth ringing our Carers UK helpline, who will go through everything with you, and make sure you are getting all the help available. The care and benefits system is a bit like snakes and ladders, even DWP helplines don't know all the rules. CUK's helpline made me much better off, so I often sing their praises! If you pay Council Tax, your husband should be exempt on the grounds of severe mental impairment. If you look at the top of this page, there is a help and advice tab with all sorts of information.

[Scally]

Welcome on board, there is some good company here if you need to let off steam or just chat. Self employment is a good idea if you have a useful skill, and it keeps your hand in the workforce and a few bob in the kitty. Mainly, it can keep you sane!

[Godrevy]

Thank you. We are negotiating the finance maze at the moment and it is good to know there is a helpline. I've also found a form to apply for council tax reduction, so that is really useful.

[Anne001]

Welcome to the Forum, Godrevy. Have a look around and dive in when you feel like it.

On the subject of the Helpline, it is sometimes difficult to get through on the phone but if you have problems, email them and they always respond. They have been a great help to me too.

Do you get a break at all from caring? Try to look after yourself too although I know it is not easy ...

[Godrevy]

Thanks. I am definitely getting breaks now. I found out the hard way what happens when you don't.
On the plus side though, I found that many friends were very worried about me and willing to help and since I stopped telling them everything is fine, they have been brilliant.

[Brindleboy123]

Warm welcome to you from me too! Glad you found us and I am sure you will enjoy - please have a look at the site and join in where and when you feel you would like.

Bell x