Exhausted and worn out

[Dorothy_1609]

Hi. I am new to this forum. I am the full time carer for my husband who has a progressive brain disease. His condition means he has many bad falls. I have no family to help (all couldn't cope and ran for the hills). I am exhausted and I'll looking after him on my own. We have been turned down by social services and our local council for any carers or some respite for me. I am now feeling ill, both mentally and physically and today it all got too much and I self harmed. This is not the sensible, professional person I once was. I am wondering if it is even worth carrying on

[Elaine]

Hello Dorothy and welcome to the forum
So sorry life is treating you so badly at the moment. Why on earth have you been turned down for any help? Were you given a reason? You need to go to your GP asap and tell him how you are feeling and what you have been driven to do.
Presumably you have had a needs assessment for your husband, did you also have a carer's assessment for yourself?
How old is your husband, old enough for attendance allowance? If so claim it and use to pay for some help privately.
Explain a little more and there will be more suggestions for you from forum members. What is this 'brain disease'?
Do you mean dementia or something else.
Remember you are anonymous on here.
Elaine

[Pet66]

Hello Dorothy. Welcome to the forum.
You cannot carry on without help and respite. Please start by going to your GP and explaining that you are a so desperate you self harmed. Suggestions your husband needs assessing again. Surely your GP will see that help is needed. If you are taken even more ill than you already feel who would look after your husband.
Others on the forum will be able to guide you more than me.
You ARE important and deserve support.
Pet66

[jenny lucas]

Dorothy, I can empathise with you in two respects. Firstly, my husband had brain cancer, and secondly, a few years after he died I 'inherited' his mother who was developing dementia and simply 'collapsed' all over me. I looked after her for weeks at a time, she couldn't cope at her own home at all, and she basically 'took over my life'. If I hadn't put her in a home (with much guilt and misgiving), I was getting seriously suicidal. My life was simply not worth living if every waking moment had to be dedicated to being with her and spending every day looking after her. I had no time to myself at all, and my own life just 'stopped'. I was on my knees with rage and frustration and sheer disbelief that this was happening and I simply could not 'put down' my MIL but had to carry her EVERYWHERE with me.....

So I do understand that combination of 'rage and despair' that you describe.

Something HAS to change with your husband. I am not, alas, the person to guide you through how to tackle the NHS and SS to get them to get off their backsides and DO SOMETHING for you and your husband, but there are plenty of members here who do know (and have the scars to show for it!).

What is your financial situation? Is any 'self-funding' for getting care in for your husband at all possible? I would urge you that this is not the time to think of 'savings' or whatever, should you and your husband have any, and I would say that a priority is now getting you some help. BUT, of course, financially that may not be possible, and you may indeed have to rely on extracting from SS/NHS the support you obviously need.

May I say something that is regularly said here to new members? It is to remind us all that NOT A SINGLE ONE OF US actually has ANY 'legal responsibility' for our carees (unless they are children under 18). That is actually a very powerful thing to say - because it means that IF you wanted, you are perfectly free to turn around to SS and say 'I've had enough, I'm getting a divorce, and I'm leaving my husband - so damn well look after him yourselves!'

You are entitled to do this! And sadly and shamefully, you would not be the first carer to have to use that ultimate threat of withdrawing ALL care from your caree, in order to get some SS support. The brute truth of course is that they are cashstrapped and they LOVE trying to get us to care for our carees for 'free'. Yet they know that if THEY had to do what WE do, it would cost a FORTUNE!

That's why I say it's powerful to remember that actually, you COULD walk out tomorrow if you wanted....and it would force their hand dramatically!

What does your husband think about it all? I do hope he is 'on your side' and wants to have you get some help, and is willing to have 'strangers' come in and give you a hand. And, indeed, to go into a home for a week or two so you can get away on a break!

Wishing you a better time than you're having now - kindest regards, Jenny

[Dorothy_1609]

Hi. Thank you for your messages. My husband has a brain disease called Ataxia. It is rare and it affects balance, speech and swallowing. He was assessesed by social services who said he was a vulnerable person with primary care needs. After being put through five months of assessments, he was told he could get £60 a week which would buy us 3 hours of care a week. However at the end of five stressful months a woman from the finance department of the city council came in for five minutes, looked at our bank statements which are in the red and turned us down flat. This week we also got turned down for Attendence Allowance which was the final straw for me.

[jenny lucas]

Dear Dorothy

Surely the only criterion for whether your husband does or does not qualify for things like Attenance Allowance and some 'free' care, is whether he can live an independent life or not?

If YOU were not there, could he cope with life? Or would he be 'acopic' (odd term, but apparently official, and very useful in defining how someone simply 'can't cope' with everyday life!)

If the answer is 'No, if I were not here looking after him, he would not be able to live independently' then logically he MUST qualify for 'care'???

As so many folk here have found out, it is ONLY when a family carer threatens to 'walk' that SS etc actually pull their finger out and Do Something. They know perfectly well that the cheapest way to deal with those who are acopic is to get family carers to do it completely for free....which is why they try, every time, to get YOU to do it alone. BUT, they also know the most EXPENSIVE way to deal with acopic people is to have to look after them entirely themselves, have them in residential care, etc etc. SO, rather than that (which is what would result if you 'walked'!), they (reluctantly!) agree to give the family carer SOME 'free' extra care......

Wishing you all the very best, and there are definitely those here who have experience of getting help via the SS/NHS etc etc.

In the meantime, why not visit your husband's GP and get them to write a letter saying just what your husband can or can't do (even better, get his neurologist to do so!). That would 'certify' him in the eyes of SS.

You doubtless are well aware of the ataxia support charity, but I put down some links anyway, just in case!

Wishing you all the very best - it's so tough looking after someone at all, let alone when SS just 'dump you in it' as they are with you.

Kindest regards, Jenny


https://healthunlocked.com/ataxia-uk

https://www.ataxia.org.uk/Pages/News/Ca ... ith-ataxia

https://www.ataxia.org.uk/a-list-of-bra ... ort-groups

https://www.ataxia.org.uk/use-our-helpline

[Dorothy_1609]

Hi Jenny. Thank you for your messages. My husband would not be able to live independently on his own without me. I literally have to carry him from room to room and he cannot stand up unaided. We went to see his Neurologist yesterday and he was appalled that we are not being given any care assistance. He is going to write to ss and everyone concerned. I am aware of the Ataxia group but thank you for the links.

[jenny lucas]

Very glad to hear your husband's neurologist is outraged, and will write on your behalf.

Others here who have (grim!) experience of SS will, I'm sure, be here to advise you on how best to tackle them again to get what your husband NEEDS....

Glad you're in touch with the ataxia charities etc etc.

Wishing you all the best possible, and do hope the situation improves. KR, Jenny

[Elaine]

Hi Dorothy,
That's absolutely unacceptable. Start screeching for help. E-mail the help line on this site, contact Citizen's Advice, any charity connected with your husband's condition, get back to the neurologist to check he's written, contact you MP and badger your GP for a start. Also letter to SS might do something plus check out your local authority website and see if you can spot anyone worth complaining to.
How about calling a paramedic every time you need to move your husband and tell them you can't do it and SS won't help.
Scream, shout and stamp your little foot until someone actually does their job and helps.
Good luck.
E.

[bowlingbun]

Write a short letter to your GP, sent Recorded Delivery, requesting an URGENT assessment for NHS Continuing Healthcare.