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My new Post! - Carers UK Forum

My new Post!

Share information, support and advice on all aspects of caring.
Is there such a thing as an 'Official, Legally binding Pass', for Carers such as myself, caring for my wife who has significant Cognitive Impairment following a bi-lateral Thalamic Stroke please?
My wife has had two 'sessions in hospital' recently and on both occasions I had real difficulty convincing the Medical Staff that I should be with her at all times (except for the obvious places such as operating theatres etc..) in order that they were getting the correct answers to questions about her medical history, allergies etc..
I had really to 'dig my toes in' and refuse to leave her on her own on both occasions. When such a Pass would have prevented this!
My wife 'presents' quite convincingly and answers with real confidence but sadly she gives incorrect answers to most questions.
I would have thought that it should be 'illegal' to question someone with any form of Cognitive problems without a Carer, who knows the person well, being present!
(Incidentally my wife and I have been married for 62 years so I think I can say that!)
Thank you for any advice,
Congratulations on 62 splendid years of marriage! I've been married twice, and I am still about 35 years short of you in total. Of course I could have married two or three of them at the same time to make up the numbers ... but that's another topic.

As a spouse you are perfectly entitled to be around a lot, but all wards have routines and carers do get horribly under the feet of the staff at times with their questions. I would suggest sticking to official visiting times and enjoying your well-earned break.
Hi I had the opposite experience recently when my hubby was in hospital the nursing staff asked if I would stay.He has cognitive problems also and can be difficult at times but was in a lot of pain that day and couldnt get comfortable, so I didnt really want to leave him at their mercy anyway.It should be in the medical notes, as my GP has said that I always have to be with him for GP appointments/hospital appointments because he doesnt really take in whats said properly.
I have read that in some areas there is a Pass system, so relatives like you are allowed unrestricted visiting, however it wasn't relevant to me at the time, so I didn't keep the article. Someone is bound to be along later with more details. Do you have a Health and Welfare Power of Attorney? My mum was recently in hospital for five months. Although she had been in the local major hospital before, and told them it is OK to discuss anything with me, this kept getting overlooked. Now with the new style Health and Welfare POA they know it's OK to tell me anything. Mum is very economical with information, and although she doesn't have dementia, only gives the minimum of information. (Dad used to work on secret stuff for the government, and mum treats her medical history in a similar fashion!!) It might help you to contact the hospital concerned and ask to speak to their PALS office (Patient Liason), explain your problem and ask them to find a solution. I'm so envious of your long marriage. We married when I was 19, but sadly I was widowed at the age of 54.
We had no choice but to stay with our son when he was in hospital with pneumonia as the staff on the respiratory ward claimed not to know how to operate his ventilator, cough assist machine, nebuliser etc and they certainly did not know how to hoist him or any other care that he needed. Hospital might be ok for the able bodied sick but they have not got a clue in how to care for severely physically disabled people. Plus their attitudes suck majorly and they clearly need disability awareness education - one size does NOT fit all!

I had this problem with my mum and remember sitting and feeling really put down by the doctors but stand your ground you know your wife better than anyone else. When she went into hospital the first time I had no choice but let her go on her own as my husband was away and I had 2 children to care for. Anyhow I wrote everything down, details about her medicines illnesses and dates etc and handed it to the ambulance man. I found I kept getting calls from doctors to clarify everything I think if you leave all the talking to the patient they soon talk them selves in circles and the doctors soon realise.
This last time she went in I was with her and could tell the doctor thought I was overreacting because every time she asked mum she smiled sweetly and said she was fine, the nurses were with her more and could see her struggle and I enlisted there help to tell the doctor. This worked thank goodness as she had a fractured osteoporosis in her back with postural blood pressure causing her to faint on standing or sitting.
Good luck with it all I don't know if my experiences will help you because we are all different but I just hope so.
Dear Scally, weemocass, bowlingbun, Eun and loopylou,

Thank you all for taking the time to respond to my query. It really does seem to be a Post Code lottery. I feel some empathy with each one of you and it certainly seems to be a case of "One size fits all" as far as the NHS is concerned ( Thanks for the quote Eun,)

I do agree with all your comments about our unique and long time together. In that respect I feel we have been privileged and very fortunate!

It appears to me that our Hospitals are employing far too many 'Chiefs' and no where near enough 'Indians.' There are insufficient Doctors and nurses actually 'on the ward' and Government 'Targets' do not allow the time for the 'trivial detail' of actually READING the Patients 'Notes'!

I am old enough to remember the inauguration of our National Health Service in 1948 and was fortunate to attend one of Nye Bevan's impassioned speeches! I feel he would want to disassociate himself completely with what successive Governments have done to his very precious National Health Service. Indeed I feel that the immoral concept of making a profit from someone else's misfortune should be an anathema to a modern, 'civilised?' Society. I forecast what's left of our NHS will be completely Privatised before very long!

To get back to my original problem (now that I've got that off my chest!) I shall certainly take up bowlingbun's suggestion and contact the PALS section of my local hospital and virtually hand my problem over to them. I shall 'Post' their solution in the hope that it may help someone else with a similar 'Significant Cognitive Impairment' problem.

I have no intention of leaving my wife 'on her own' unless I can get someone, in an authoritative position, to sign a piece of paper accepting full, personal responsibility for any 'errors' made due to their misunderstanding of my wife's responses!
(Did I hear someone say "Pigs may fly?")

Best wishes, Snapper31.
Will our daughter's claiming Carer's Allowance effect my wife's Attendance Allowance?

My wife is in receipt of the Attendance Allowance due to her having had a serious Stroke in 2011.
Although I am registered as her Carer (24/7), I am not allowed to receive any Carer's Allowance because I get the basic ' State Pension' (which I have PAID for during my working life of, nearly, 47 years!) The DWP in their wisdom feel that this is sufficient for EVERYTHING!
They say that I cannot have two overlapping Benefits, obviously saying that the 'State Pension' is regarded by them as a 'BENEFIT!!!' (ie: a 'Handout!')

I am urging our daughter to claim for 'Carer's Allowance.' As without her daily help we just couldn't manage! My wife and I are both in our eighties.
She has her own family to look after, and comes, some distance, every day to do the cleaning, shopping, preparing some meals and doing most of the 'heavy' washing.

She is most reluctant to make any claim as she is convinced that the DWP will find some way of reducing my wife's Attendance Allowance.

Could anyone advise us as to whether her claiming Carer's Allowance could possibly effect my wife's Attendance Allowance please?

Thank you Snapper31.
Hi Snapper.

I was a staff nurse for twelve years before I became ill myself , so I know a little bit about the hospital environment and the rules in place.
The answer is no . No such 'pass' is in place. When a person is admitted all information is taken at the time. If every ward allowed someone to stay with them , it become a very unsafe environment for lots of reasons.

Talk to the staff each time you visit and explain anything you feel they have missed or need to know.

Tilly Image
There are definitely pass systems in some hospitals. As long as your daughter is caring for 35 hous, she will probably entitled to CA if she is not on benefits or working elsewhere. You might be able to get Direct ayments fot the work she does for you. Ask Social Services if thisis possible.