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New to the forum - Carers UK Forum

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Hi I have just joined and found the forum to be a mine of infor. My husband Trevor, suffered a brainstem stroke in 1997 at the age of 57. It has left him completely paralysed, unable to talk or swallow and is fed through a PEG tube. He was diagnosed with Locked-In Syndrome i.e. he is unimpaired metally but unable to communicate except through blinks.

I have been caring for Trevor at home since June 1998 when he was discharged from Rookwood Hospital in Cardiff. I like many others have been through the trauma of applying for NHS continuing care which I only found out about in June 2006. Apparently Trevor should have been assessed before leaving hospital!! After being turned down initially, although Trevor met ALL criteria, we have now been awarded Continuing care and are in the process of reclaiming all the home care charges incurred since 1998.

Trevor has never been in respite care since his discharge from hospital, and although I love my husband dearly, I really am in need of a break. The daily grind of care and of never being able to do anything spontaneously is finally getting to me. Problem is, I have not been able to find a centre that will take Trevor because of his complex 24hr care needs. Anyone out there know of anywhere?

Thanks for reading this.
Hello Barbara

Welcome to the forum!

I remember when my Mum first took ill 12 years ago, the only way that she could communicate was to nod, thankfully she regained her speech which is more like a whisper and is selective who she'll speak to. Mum also like Trevor, has a peg tube and has been a life saver as it was very difficult to get her to eat before.

I have the same problem getting Mum into respite or Daycare because of her high care, but have managed to get her into daycare 2 hours twice a week from last year. Reason its only 2 hours is because of her high care. As for respite I have Mum stay at home and I pay for care through Direct Payments. You sound like a very caring wife, but you do deserve a break from caring. Maybe Direct Payments would work for you?

I'm delighted to hear that your in the process of reclaiming home charges.

I know that you'll feel right at home here, there are so many wonderful people on the forum, always supportive.

Take care
Maryann x
hi my husband had a bad stroke over 2years ago he needs 24 7 he can talk but that is about all he crys a lot i carnt get him to go out in his chair but the other week i was feeling so down our gp offered to put him in hospital to give me a brake would yours not do that for you? i didnt take him up on his offer as i didnt feel at the time it would have helped me you will find a lot of very nice people on this site i did and they are always there when you need a friend.Molly
Just wanted to add my welcome Barbara.

Hope you feel at home here and look forward to reading more from you.

Hi Barbara

Good news that your husband has been awarded continuing care (even if it is 10 years late!)

Have you tried contacting the Stroke Association? They may be able to help you with regard to the centre that maybe able to care for his needs or your social worker shoud be able to sort this out for you, although you might have to be a bit pushy.


Wales is half way down the page on the left.

Hope this helps.

CB Image
Hi Barbara

Welcome to the forum - look forward to chatting with you soon.

Take care

Paula xx
Many thanks to everyone for their welcome notes. I have a problem in that Trevor flatly refuses to go into any kind of respite care at the moment. Although he cannot speak we communicate by using the alphabet. We have divided the alphabet into 4 columns, one is the vowels and all other letters are in column two, three or four. I recite the columns and Trevor nods on the one he wants, then I recite the letters in that column. It is very laborious and can only be used for basic communication but it does give Trevor the chance to express his wishes!

Hospital seems to be the only respite care available to us and Trevor has a phobia about going into hospital as we have had some really bad experiences. Because Trevor is so handicapped and cannot communicate with anyone, they assume everything is OK and just "ignore" him instead of checking constantly that he is OK.

I'm sure that eventually I will find something, its just that I get so tired I do get a bit irrational at times.
hya i also care for my husband , and find it very hard work he has end stage liver desease i get help from our local hospice, they send someone for 2 hours per week to let me out to have a break shopping ect hope you also can find someone maybe through your husbans doctor ect good luck and god blessx
Hi Morag & Audrey - just noticed Barbara actually hasn't posted since 2007 so chances are she's no longer popping in to read your nice replies!

Morag - if you look in left hand column you can see the date and the time that the post was made. You can also click button marked "profile" at the bottom of each post and you can see their profile and from there you can click to see if they have made more recent posts. In Barbara's case she hasn't posted anything since 2007.

Don;t worry you'll soon get hang of all this - moderators are here to help you out. Welcome! Image
is ther any way though that she can be got hold of to see if she is ok?