OH has fractured femur - not a good situation

Thinking about you Lucky sorry I can’t help.

No advice Lucky but still thinking of you. ?

I’ve no words to help lucky but do think of you often and as ever hope that there is help for you both. Sending love.

Thank you for that chloesgranny - I tried the Med Benevolent Fund and they only deal with practising doctors still on the GMC register. I will take a look at the other link.

Might it be worth getting in touch with either or both of these charities to see if you could get some help with the cost of Carers and general support? doctorshelp.co.uk and the Royal Medical Benevolent Fund. Thinking of you and hoping you have a quieter night.

Oh Luckygirl ??? and heartfelt good wishes.

I'm also thinking of you and sending kindest thoughts

It's so awful, Luckygirl, I really feel for you. When DD was having hallucinations due to toxins building up in her system, the need to go to the loo increased and as she insisted on walking, I had to juggle the drain bag, drip (sometimes) and syringe driver. This would sometimes go on all night so by the time she agreed to go into the hospice I was exhausted.

They're not themselves but no matter how often you tell yourself that, you just want it to be over no matter how much you love them

Thinking of you every day.

Can it not be argued that DH's primary level of care is a health need and therefore paid for by SSD?

I am sure I remember he developed pressure sores and that is nursing care would you not agree?

It is a nightmare for you.

I agree with maw and also send you lots of love and hugs.

I wish we could do something to help.

Lucky I was thinking about you earlier and am sorry now to read your latest updates. I cannot offer any advice but just wanted to send you hugs and . Take care of yourself.

Indeed Maw - how I wish he had slipped quietly away in hospital when he had pneumonia - no-one would wish this misery on him. I wish he had been spared this. This is not life - it is just a miserable existence - for him and for all of us.

He would be horrified if he knew what financial and other worries he is causing - he would be appalled. And if he really knew the extent of his paranoia and what it is doing to me he would be heartbroken.

Sadly I think this is just the next phase of this dreadful illness - I have been through all this with my Mum.

Oh dear, Lucky this is sad news and so worrying.
Things have deteriorated a long way since you started this thread and my heart goes out to you.
It is easy for us to say “Something must be done” but What? How? The bottom line is that you should not be dealing with this alone.
I hope nobody will take this amiss, but however awful bereavement has been I thank god that Paw was spared this torture -and indeed that I was spared it too

Oh dear. You must be worn out. Its hard to believe that this situation continues with you being expected to cope like this. I hope you're not being too 'brave' to your family. It is not unreasonable to expect some help from them. I'm sure they are busy but this is all a part of life and can't just be glossed over in the expectation that 'Mum can cope'.

Having said that I am not afraid of violence from OH he was in a terrible state about 1.30 am. He was in bed with his "grabber" in his hand and as I went towards him he threatened to hit me if I came nearer. I had been woken by the sound of his TV on at max volume - he said he had it on to alert the neighbours that he was being poisoned - he was was away with his demons. I sat with him for an hour or so and eventually he drifted off to sleep.

Then he woke at 4 am and between us the carer and I had to get him onto the commode and over the loo - this went on for another hour or so. The carer and I took it in turns as both she and I were so tired. But he did have his bowels open so I am hoping this will improve the paranoia, as constipation can make it worse.

I will try and talk to someone tomorrow morning and get some advice.

I have hidden his grabber! It is a good thing he is so helpless or I dread to think how he would have been if he was up and about.

This is not my OH - I don't know who it is; but definitely not him.

I appreciate the update lucky but sadly can offer no useful advice. Your situation triggers fear and anger in me in equal parts. Trust yourself and your own instincts. I just wish a challenge was easier and needed fewer resources. Have you discussed this with your family or is that too difficult? Sending love to you both.

Luckgirl is there a Parkinson's organisation?
I was just wondering if
a) They could advise or help with a legal challenge to access The health care funding.

b) if they could put you in touch with others who have been or are in your position and have gone down the legal route.

And, it must feel quite lonely without being able to talk to your soulmate about the things that matter.

It is something we hear a lot from people who live with people living with dementia.

Slightly different,but when DS1 had to appeal a funding decision he had free help from a solicitor at cab. His appeal was successful.

Would the current carer, who you are happy with, be able to make a recommendation? Can you ask her to come back when she is next available?
Our family was in a broadly similar situation and as a final resort we spoke to our MP but it made no difference. I wish I could be more positive. ??

You really do need a specialist solicitor dragonfly as the whole system is weighted against you and set up for the appellant to fail. A whole industry of legal firms has grown up as Lucky has said to challenge decisions.

I am pleased to hear the live-in carer was successful Lucky and hope you find another one just as good. Do you have to have a solicitor to apply for continual health care funding? Would Age Concern be of any help? I didn't realise that this existed until I saw a programme about it on TV. Surely if your DH cannot live without 24 hour support he should be entitled.

Thank you for the update Luckygirl. I am glad that the live in carer worked out well, and hope you will find an equally good replacement soon. I do agree about the funding. The emotional toll of caring is hard enough without the financial worries too. Until the Government will address realistic funding for so called "social care" this iniquitous situation will continue. It's so arbitrary what is deemed "social" or "health" needs, when you really can't separate the two. I saw a solicitor about appealing my mother's refusal of continual care funding but decided it was too expensive. I wish more people were aware of this. You have certainly raised the profile on this thread.

I've followed your story from the beginning. I'm so sorry. Do remember to put yourself first however hard it may be. If you crack the house of cards falls. Sorry about the mixed metaphors.

Thank you for your concern - I do not feel at risk from my OH as he is now very tiny and weak. There is no physical element to his paranoia I am glad to say.

It is weird when the paranoia is present as I can tell when it is going to start - something happens to his eyes - blank and staring - very strange and quite creepy. It is as if he has left us completely. Has anyone else noted this in people who are confused or paranoid?

The fear of him falling is ever-present. But on the whole he is not mobile at all - he walks a few steps on his frame when we are holding him. Frankly he is safer non-mobile - most of the time he is just sitting in his chair - very boring for him, but he has no functional mobility at all.