Such a bad day - just a weepy heap

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
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.

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.

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!

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.

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.

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.

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.

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

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 am so sorry for what you are going through.

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.

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!

Thank you all for your kindness - I am afraid the call from SSD yesterday just tipped me over the brink. I suffered a serious depression interlude in my life several years ago and am terrified that this might land me there again - it was a very frightening and distressing experience which I would not wish to repeat.

Thank you for all your suggestions. I will follow the Healthwatch link.

OH has already been turned down for continuing care funding as he is "not ill enough" - words fail me. I took legal advice about this and I have appealed against this, but as yet no reply.

Another deep irritation about the SSD funding is that they already give me a small amount (£173 - a drop in the bucket compared with the real cost) each week towards his live-in carer, but it took them many many weeks to come up with this while I had to fund it all myself. When they eventually came up with the money the back-dated sum was paid into a Direct Payments account of which they have charge, but which I can also access to pay care bills. They are now saying that I cannot use any of that lump sum to pay for nursing home care, as it is care-at-home money - no it is not - it is MY money that I paid out from my savings as they took so long to get their act together.

It is stuff like this that just tips me over the edge.

All these assessments just confuse my OH and make him anxious - SSD wanted to do another to prove he requires NH care - which they already know he does. He is slowly and miserably dying FGS - he is not suddenly going to pick up his bed and walk.

Every little things he has needed - and some big things - have required me to do battle on his behalf and I feel all battled out now.

I am so grateful for the support I receive from friends (real and virtual) and from my family. Without this I really would go under.

Shocked to read of this development Lucky and the total disregard for all the caring you've done at home already, saving the state a lot of money. It makes me sad and angry that people can be treated so callously. You must be weary and I think the others are right, you need someone to fight your corner now. xx

So sorry . Obviously care not dare .

This just makes me sick . In other words if you are rich ( and can prove you are) you can have the best of dare . If not , tough shit .

I’m so sorry Lucky you don’t need any more stress or pressure than you already have . x

I think your DH is entitled to continuing health care so you should not be paying anything. Is there no one who can help with this.
Maybe Ageuk as Kitty says.

Very very sorry for this but maybe time to lean into family and get help. Sorry to be blunt but if you are able to come up with the funds, so be it.

Luckygirl

www.healthadvocacy.org

Can you appeal to a Health Advocate to get you through this?
You need expert support.

If you do have to go before a blasted tribunal to plead your case, make sure you are a weepy heap - that's the only way they will see you as human.

This is not the time to bear up, gird your loins and smile bravely - make them realise what they are doing to you - the ba@#$&ds.

I'm appalled that you are being put through this, on top of everything else.
First Annsixty and now you

You could contact AgeUk for help but please dont miss out on the place.

Lucky I don’t know what to say. This is so dreadful. You must call on your daughters and GP practice for some help to get the situation resolved. You are at breaking point.
Sending you love, hugs and prayers.

Lucky I’ve only just seen this thread. I’m so sorry.
Have you thought of getting a solicitor who specialises in these matters to fight your corner? I know it would cost money but could save you a great deal of stress & anxiety & maybe save you money in the long run

Just had a call from SSD. and I am just beside myself and non-functioning - back to the weepy heap.

It seems that there is one system for funding care at home, another for funding relief care in a nursing home and another for permanent care in a nursing home. All require separate assessments, have to then wait to go before the panel and result in different amounts being paid out.

It also seems that they want proof that I have a source of funding for the nursing home top-up before they will pay their contribution, and that they might refuse to make that contribution if they think there is any danger of me defaulting on the top-up; also that if they see I can find the top-up they can refuse their contribution on the grounds that I have too much money! - this is my home that is going to pay the top-up.

They forget that there are human beings in tragic circumstances at the end of this bureaucratic pipeline.

I feel completely destroyed by these endless battles and wish I could just walk away from it all.