Such a bad day - just a weepy heap

Will the person who has offered to help you with funding help tide you over now Lucky?

Lifetime mortgage might be the way to go in the longer term. I think that the rates are very low at the moment.

Keep going, lucky, something will be resolved soon, I'm sure. And moan to us!

Are you having any professional help right now with this heavy load?

Book a couple of sessions with a registered counsellor to deal with the overwhelm.

The past, your fear of depression, the here and now, the complications with money are all intertwined and I think you need to put them in some sort of order.

Sorry to be so blunt.

I am so sorry for what you are going through.

Hope that maybe you will be able to find something very nearby, where you are able to spend time with you dear dh and let others just take a little weight off your shoulders.

I can't really add anything to previous advice, Lucky but hope you soon have more positive news.

Sad to say the system is broken and there isn’t and never will be, enough money to fix it.
If everyone who needed Continuing care got it, income tax / national insurance would need to be an unsustainable sum.
The sad fact is it is the luck of the draw if you or a member of your immediate family are unlucky enough to get ill or need care you just have to bite the bullet and get on with it.
* Luckygirl* my heart goes out to you.

Long ago, when governments first used to say 'we can't afford it' for health care, I read an excellent article by an expert in political finance.

She argued that of course there was enough money, it was just badly managed by Treasury who preferred to invest it overseas.

When the financial crisis hit in 2008, I saw all her predictions and wise words were true.

There may not have been enough money for the UK Health Service but they had billions in reserve to bail out banks and businesses.

We down here at the grass roots don't matter. They see us as worms.

The kind of nursing home Luckygirl describes is our ideal of what we would wish for our loved ones.
Remember at the beginning of the last century, probably for many years after, if family couldn’t cope they would be living in long stay hospitals or places resembling workhouses.
The family left behind would not be much better off.
We have thankfully come a long way from that.
But the home we are talking about would be £100,000 a year.
Give that the pension, saving etc contributes some of that, the cost, multiplied by the thousands and thousands in care today, would bankrupt the country in months.
Too late for us all now but a system needs to be thought out and implemented where we pay for insurance all our working lives to prepare for this.
This is why the NI system was started to pay for our health care and aren’t we all very, very pleased about that.
The original plan, looked after from cradle to grave is already not possible.
We need a radical overhaul of the system.

So sorry to hear of the difficult time you are having.
There is no reason that you can't have a weep - in fact, allow yourself time to grieve for the closing of one part of your life and how both you and your DH expected it to be.

Quite true, BradfordLass and yes, annsixty, the system is well and truly broken yet nobody realises how dreadful it is until they need some help. We involved a (no upfront fee) solicitor to try to access continuing healthcare for Mum.

She was 89, wheelchair bound and disabled by a stroke. The assessment for CHF (after several months in hospital) was (astonishingly) that she needed 24 hour care and hoisting - yet it was only 'personal', not nursing care. Strangely, the nebuliser she used was a nurse's job in hospital but not in a care home.

I feel I must point out that nursing and care homes (three 'luxury' versions of which we tried) simply do not provide the 24 hour care that they claim to. Why? They just don't have enough night staff - and there is no minimum number or ratio. Staffing is their main cost so they are always understaffed although they claim not to be.

Another problem is that call bells/buttons can be left out of reach in a home - whereas that's not allowed in a hospital. We can't blame individual overstretched staff for resorting to doing that either. They are just human, after all. Elderly people are often awake and very restless at night. Care at home requires a person to be present 24 hours so there's a major difference.

Mum had a mobile phone and would often call me at night. I'd then call the home to ask/demand that somebody went to help her. This was often after several hours of her waiting patiently, calling for help, then panicking that she'd been abandoned in an empty building. She then (increasingly confused) took to calling the police for help. It was absolutely awful when we had to take her phone away!

When we were searching for a nursing home for my mother, the new one that opened not far from us had a bad reputation from the start. It was set in beautiful grounds, modern facilities and just a ten minute drive away but we were advised to avoid it.

In the end we found one twelve miles away in the middle of Cambridge. It was an old building, looked rather shabby from the outside but the care was first rate. There didn't seem to be any staffing problems and the whole place buzzed with activity and an overall feeling of positivity.

She was there for 16 months before she died. Her last care home had given her a few weeks!

I suppose like a lot of things you shouldn't judge a book by it's cover. It's so hard to know if you are making the right choices though when you feel backed into a corner.

Hetty
My H was in a similar state, he had Alzheimer's, he had a major stroke, was in a wheelchair which he constantly tried to get out of , resulting in many falls.
He was then diagnosed with what was thought to be a low grade cancer, it wasn't, he died three months after diagnosis.
I still couldn't get continuing care.
I think that reading my very frank posts, some would think it is a case of " I'm alright Jack" and "people should pay for care, why should they be saving it for their children to inherit".
Nothing could be further from the truth, I have been there and done that and this was our joint income which was being used.
One SW told me I would have to use my savings and then go on benefits as all my H' s income would go on care,.
This is not the case as I found out but I can tell you until I found out I had some very dark days and sleepless nights.

annsixty, I just wish we'd known how things would pan out at the time. We were new to it all and lost, really. She refused to come and live with me. I should have insisted that she spent nights here and there is a day centre nearby. The last year of her life (in the homes) was fraught with problems for all of us.

My father had been traumatised by the war. He was in the RAF and the only one from his group to survive. He never spoke about it until his final days. He ended up in a locked hospital ward, totally broken (mentally) with a rare cancer. There was no other place available for him, poor soul. You are left feeling useless and helpless, unwilling to even think about them and remember their sad final months.

Hetty, utterly heartbreaking.

Hetty, they will have had some good breaks in their lives. And their declining years was not your fault.

Another thought which I remind myself of.......choices had been made.

True Alexa but silly old me just assumed that there would be adequate help for the elderly in the UK. After all, we are one of the richest countries in the world. The NHS is struggling on it's knees and you can't even buy decent care around here (London area - unless you happen to have disabled-friendly accommodation already in place, perhaps).

We are a comfortably-off family and paid £5000 a month for Mum's homes, yet still she was neglected - especially at night. It's left me very sad.

Hetty, silly old you, didn't know because nobody does until they are going through it.

It's not taught in schools, friends don't discuss it, it's isolating and awful.

I have just had another "difficult" conversation with the health authority from whom I have a letter confirming that if OH went into a nursing home he qualifies for the nursing supplement (c. £165 per week) which is paid directly to the nursing home, who then take that amount off their charge to the patient. All clear - all fine.

So, today I phoned them to say that OH is going into a NH and I wished to organise for the nursing supplement to be paid.

They rang back about 15 minutes later (just happened to be the same person who refused him continuing health care funding) and said they would not pay this, in spite of the promise in writing, because it was a new nursing home that they did not know - this is of course a home run by a reputable organisation which runs many homes, and is of course registered with the CQC.

I am afraid they hit me on the raw and got very short shrift from me. I told them very firmly in a quiet voice that we are dealing with a sad family crisis with a loved-one slowly dying, and that I am tired of being thwarted at every turn (well I actually said being shat on!) and quietly put down the phone, because I knew I would be in tears again.

I contacted the nursing home manager who was less than happy about this and she assured me she would ring me back in a few minutes, which she did. She assured me that I must not worry about this - that they would sort it out with the health authority and the amount I would pay would not change.

It is an extraordinary minefield, and ann is right that if everyone who qualified for full continuing health care funding were granted it would bankrupt the health service. Indeed the judge in the landmark case in this field said quite openly that his decision to force the HA to pay the money in that case opened the door for the majority of elderly and disabled people qualifying for the money.

This is why I am appealing the decision - I know it is at huge cost to the health service, but if that is the law it is the law. In order for that not to be then the government needs to revamp the system.

There really is no humanity in the system at all - no place for grieving sad people to be taken into proper consideration. It is tragic.

I have spent part of today sorting out the finances as regards the nursing home and , whilst being eye-wateringly scary, I have a pan in place, so I feel more settled about it. IN addition I have a financial advisor coming to see me on Tuesday and I am going to run all the plans past her.

It is so tiring, but I have the blessing of my lovely family, friends and gransnetters, for which many thanks.

plan

You must be exhausted lucky, in spite of it you’ve got a plan in place, I’m relieved if still worried for you. The Home manager sounds to have some common sense and also keeps her word. I hope your husband can be settled soon and you can go back to being his wife, not his carer. Love to you both.

I have felt very bad today after my posts this morning , I could only think in retrospect how awful my views would come across and I could only hope that Luckygirl and anyone else going through this horrendous time would see that I was only trying to point out how the situation is broken.
It will take decades to rectify it, in the meantime families will continue to struggle and try to do their best.

Sending lots of love to you Lucky and your husband.
I really feel for you. and hugs.

I am sure no one would have thought you were trying to do anything other than help annsixty. When you have experience in things you try to help others going through the same thing.

SS don't have a bottomless pit of money and those checks and balances are put in place for a reason.
If they, SS, handed out money without due diligence, (and every applicant will have an overriding reason as to why their case is deserving of a rapid conclusion) there are people who would object to that too and there are others who would scam the system.
Very unfortunately, this time lapse disadvantages people like Luckygirl who have given everything and then some, often to the detriment of their own health, only to find there are more hurdles beyond what seemed like a golden opportunity.
I can only wish Luckygirland everyone struggling with the same issues, the strength not to fall at the last fence.