OH has fractured femur - not a good situation

Just adding my best wishes

Bon courage Luckygirl - you know where I am if I can be of any help. Xx

I hope it works out well for you all, Luckygirl.

Not quite the same situation but a friend with PD whose wife died suddenly now has a live-in carer. He tried a nursing home, a very posh one, but it drove him bananas and he took himself home and arranged for carers.

They come for about six months at a time, mostly from South Africa (I'm not sure why that is), and so far it's working ok. We, his friends, were a bit concerned that he'd be taken advantage of, being quite vulnerable, but they all seem conscientious and he is well looked after. He gets out and about a lot which is excellent.

I hope it works out well Luckygirl and that the Carer is good and bonds with your OH (and you). Hopefully it will relieve you to get out and about and give you a lot of support. It is sad that it's so unaffordable for most, or that it drains life savings, as in your case, as many of us or/and our loved ones may lose independence and need care as we age. It's the luck of the draw I guess. Do you want to change your name Lucky

Just caught up lucky. I know it’s early days but hope its so far so good for you all.

I've just caught up with this, lucky. I wish you well too.

Is dh home already?

A little update for all those who have been kind enough to help prop me up over the last months......

OH spent 2 weeks in the hospice where he settled happily and was very well looked-after by the kindest of people. He came home about 10 days ago and we have employed a live-in carer, who is excellent, but will only be with us for another week, before she leaves for the summer.

The agency is being a bit slow in finding a replacement for her. They sent us one profile yesterday - a lady with all the right experience, but who was so offhand on the phone that we rejected her.

Unfortunately OH has developed paranoid delusions (he thinks I am trying to kill him) and hallucinations (there are people in the room) - but we are treating this and trying to keep it under control. Physically he is no better at all.

It is a huge challenge for me to be making big financial decisions in order to get his care funded.....do I invest/gamble £6000 in solicitors' fees to challenge the health authority's refusal to grant continuing health care funding? (there are firms of solicitors who specialise in nothing but challenging these decisions - amazing - law firms set up to specifically stop health authorities cheating the public!) The gains could be huge - or it could become a huge loss. Do I let our savings run down (very quickly!) and go for equity release to cover care costs?

The person I would usually discuss these things with is my OH............

SSD are useless - their assessment of his care needs is laughable; and always that underlying assumption that I will be here and doing the bulk of it rather than concentrating on his needs. The amount of money that they might contribute to his care is based on their laughable assessment of need; and they expect him to contribute most of it - I worked out that going down that route would gain us £35 a week - a total drop in the ocean in this context.

Lots of difficult decisions. What an iniquitous system.

I'm being objective here but what happens in a crisis? Eg what if he attacks you while in the throes of a paranoid delusion? Or falls and neither of you can get him up! Something would have to be done but where does the buck stop? Would it be a matter of calling the police (if attacked) or an ambulance (if a fall)? What would happen then? Your situation is one of constant potential crisis- as you well know! Who would have to pick up the pieces?

Thank you for the update lucky.

I was going to say the same as jane.

I worry for your health.

When my H fell and I couldnt pick him up I did have to call the ambulance service
I had carecall but as my H was on Apixaban, he had to go to be checked over in case of a bleed ,so carecall would ring an ambulance anyway.
This did happen several times and we had at least 3 x2 hour waits mostly at night or the early morning.
It is just what happens.
The only time we got a swift response was when he had a stroke and the wait was less than 30 mins.

My friends sister was subjected to physical attacks more than once when she wouldn't let her H have the car keys, neighbours intervened and once the police were called.

He was only taken into care, respite, when she fell and was admitted to hospital with a broken shoulder and other injuries.
It was then realised how bad he was and he never came home.
He is still in care, she has since died.

This situation is happening all over the country everyday .
It takes a tragedy or near tragedy to bring attention to it..
There is no answer presently.

My heart goes out to luckygirl as she knows.

Luckygirl. I am sorry to hear of your situation and hope things improve regarding your husband’s care. ?

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.

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 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 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.

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.

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. ??

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

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.

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.

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.

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.

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'.

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

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.