Such a bad day - just a weepy heap

So sorry to hear what's happened Licky. How frustrating and upsetting after all you've been through.

Does the BMA have a benevolent association who might help with your OH's situation? If not financially, they might have advice. Just a thought.

To be frank I am not completely surprised that things aren’t sorted.
In this area SS will not sanction CH in the luxury category you are describing.
They are fully self funding .
Luxury isn’t always best as others have pointed out.
We have a home just 10 minutes away, absolutely beautiful with a lovely setting.
A cook at my H’s home had worked there and left to come to my H’s saying how much happier she was.
You may have to be prepared to pay most of the care apart from nursing which will be paid by NHS.
I feel so sad for you that the roller coaster ride hasn’t stopped.

Well - it looks as if SSD might have scuppered the whole plan by giving the NH so much grief that they are heartily pissed off. And I do not blame them - I am too.

And all for the tiny pittance that SSD might come up with.

If it goes pear-shaped I have no care for him from Saturday.

Is it a very popular Nursing Home with a long waiting list? I would have thought they would be glad to put up with a bit of inconvenience to get a place taken up and paid, and probably more in the future with their new contract.

So sorry to hear you are having such a hard time.

There is a Medical Benevolent Society that can provide emergency help- and even long term support.

Lucky, take the place and then sort things out from there. You will be feeling stronger when you are confident that your dh is being well cared for. It is best thing for both of you.

Talk to AgeUk about the best way to organise your finances.

You can look at Lifetime Mortgages which will give you a lump sum to use, the interest rates are low or you can let it accumulate and it will buy you time.

Thanks for these words of wisdom - my ability to think rationally is floating over the horizon.

The home is brand new with 4 wings, and only one of those wings has occupants yet and is about half full - so it is of course in their interests to have my OH, even with the SSD aggro. I am hanging on to that.

The Medical Benevolent Society is a route I tried and they will not help anyone who is not registered - so all the retired GPs who are likely to be those in need of help cannot get it! - unless they are rich enough to carry on their registration when not working! But it might be worth my while getting back to them to see if they can point us in some other helpful direction.

Nothing helpful to add lucky, just that I'm thinking of you and hope with all my heart there is a solution.

Lucky, if the SSD contribution is a pittance forget it for now. The health of both of you is priceless!

We appealed Mum's funding, twice, after she went into a home. We lost both times but we did it.

Yes. Definitely get back onto the Medical Benevolent Society. They should at least give you some advice.

So sorry for your aggro butI felt it would happen.
It is so difficult to deal with a N/C home not registered/ approved by SS.
You have a very difficult battle on your hands unless your family member is prepared to fund fully.
NHS fully funded care is so hard to get.

You may already know of this website Lucky but my DD is currently dealing with her F (my ex) and she's trying to find suitable accommodation for when he must move once his nursing care is ended where he is at the moment.

She found it helpful, but they are at the very start of this process. www.agespace.org/care

Sending warm wishes. x

ann - the nursing home is registered with the CQC and is part of a string of excellent homes. They do not have to register with SSD, but if they want to take people receiving support from SSD, they have to sign a contract with them. That is all to do with money - never mind quality of care!

The NHS (rather than SSD) aspect of the support - I am currently appealing the refusal for that.

Hopefully we will be able to go ahead on Saturday - I am going in to see them tomorrow. I do feel this is the right place for him. Even if he only has a short time of care of this quality, then it will have been the right thing.

Thank you for the link Ginny42 and to everyone for keeping me passingly sane with your kindness.

Could you downsize or rent out rooms?

Sorry if this is insensitive, just a thought.

I really do not want to seem difficult lucky but having been up against the system in my area I feel your pain.I had a limited choice of homes that SS were prepared to engage with.
My H had multiple problems, Alzheimer’s, severe stroke, heart problems and finally cancer.
I still couldn’t access continuing care. I couldn’t even have end of life care in his current home even though I would have been paying.
He ended his life in a hospice ward in the local hospital after I became totally frustrated with everyone and said
I wouldn’t accept any thing else for him and for me.
It was a very unsatisfactory ending to a 60 year marriage when I had coped and struggled on until 5 months before he died.

You did brilliantly in the circumstances ann but isnt it appalling that it all ends like this!

Just sending a BIG hug and hoping and praying that you have the strength to make the right decision for all of you xxx

Oh ann - I do identify with all of this and I am so sorry that you went through all this as well. One of biggest problems since he came out of hospital has been getting people to see him as a sick human being rather than someone who is trying to drain their money.

I feel very much as you are saying - I want to try and get good quality care for however long he has, or even just for a short while if the funds run out. Health say he is not ill enough for funding, just like your OH you wonder just how ill you have to be.

And you are so right about the homes that SSD are prepared to engage with - they engage with them because they will do the care on the cheap. It is so painful when those with all the power forget the real worth of the person you are fighting for. I admire you for sticking to your guns and doing your best for your OH. But why oh why should we be made to fight all the time?

It's the random nature of who is given financed Continuing Care that I find the most unfair.

A friend's husband suffered a severe stroke following heart surgery - no cancer or other illnesses - I was very pleasantly surprised when he was to be given a fully-financed place at a local BUPA home around the corner from where they lived.

Unfortunately he died whilst still in hospital.

My mum was in a BUPA dementia unit for which we had to pay a top up Mum had some care paid for and a contribution from the LA as her money was all gone.

She was bedridden with Alzheimers when we applied for CHC. We were turned down on the basis that she only needed 'help' with feeding.

Luckygirl when you go in to see them, remember they are not doing you a favour. You are putting business their way.

Good luck. I hope it happens on Saturday.

It now looks as if it will happen on Saturday!!!!!

Don't ask me the machinations that I have had to go through to make this happen - I am utterly exhausted with it all. But we seem to have found a way forward.

I just want to see him settled, happy and well cared for. On one level it feels like a defeat - like throwing in the towel. But I have to hang on to the fact that he will have proper professional care; and there will be company and opportunities for various activities on the spot that may lift his spirits.

Thank you all for advice and good wishes.

I have no experience of care homes but send my very best wishes and hope that it all works out on Saturday.

All the very best Lucky

I would suggest you join the Carers UK forum for support at this difficult time. Many of us have had to make really difficult decisions on behalf of our loved ones.