Such a bad day - just a weepy heap

Just had a long conversation with OH, picking a moment when he was with it. We are going to the NH tomorrow for him to pick his room. I have organised a wheelchair taxi and hope we can get there and back OK as he cannot sit in the wheelchair for very long without collapsing in a heap.

I was decidedly weepy during the conversation - but he was not. He really is very calm about it all - it is me who cannot cope. He can see that I am sinking under all the problems of care organisation, and he knows that he is not getting as good care as he could be, so he is hopeful that things will work out well.

So that is a relief - we just have to hope that all goes well. It is a very sad situation after 50 years together, but we will just have to try and make the best of it and make it work.

It's sad but true Gabriella.

Hetty and annsixty and so many other posters have very sad and worrying stories regarding the care of the elderly and infirm. Such anxiety at a time when all you need is calm and a break from caring. I think they only echo what Luckygirl is having to face now her and OH's situation is so very difficult and exhausting, physically, mentally and emotionally.

Luckygirl I don't think anyone could blame you for getting shirty. Talk about meeting brick walls time and time again when a good and obvious answer to your worries is out there.

Things aren't getting any better, are they? It's an incredibly sad state of affairs.

Yes I didn’t think that through did I.
I hadn’t realised also, that Lucky’s H had come round to accept moving into a NH.
Trying as always to do the best for everyone.

would you now consider getting a daycarer and a night Carer It would seem to solve many problems

There is a big problem with that Annsixty. As Lucky has found out, it's very difficult to find someone of good calibre with the required experience, that would be quadrupled with live-out day & night carers.

You would need at least two people to cover the 12 hour day shifts, and two for the 12 hour night shifts. You would also have the nightmare of organising rotas e.g. one carer does Monday to Thursday, another Friday to Sunday, same with night staff.

The advantage of not having living-in staff in a small house would be outweighed by the logistics and personnel (at least 4 of them)

OH is not unhappy about going to the NH I am glad to say - he knows that the quality of care he is getting at home is greatly lacking, and remains so in spite of all my best efforts. He is stiff and weak and shaking and transferring him with the carer and the sort of equipment we have here is painful, frightening and very unsatisfactory.

I am hoping that when he is getting good professional care where they have the space, the kit and the expertise to do this properly will give him confidence. Every day is a worry for him; every move a misery. It is not about the number of carers; it is about him being beyond their caring abilities.

If it is not right for him then we will put something else together at home; but he is very much behind this decision; and the place has all 5 star ratings from relatives and those living there.

Help not health. Damn I-pad.

Luckygirl I know you have made your plans now but as you have had a very generous offer of health with funding would you now consider getting a daycarer and a night Carer.
It would seem to solve many problems.
There would be more continuity with care, you would not have a live in situation.
You could get out more as it be the day carer sole job to be there with your H.
You would enjoy better sleep as once again that would be the night carers responsibility.
Your H would be overjoyed and you would have him with you all the time.
Believe me ,constant visiting is very tiring and can be upsetting.
Just a thought now that finance is not such a problem.

Thanks for these.

Last night was quite worrying as the carer was completely off beam - I was with her when she was getting him ready for bed and there were two occasions when he could have fallen if I had not been there. And she was calling us by the wrong names. I was really worried as i thought she might be drunk. I have had a night of worry as you can imagine.

But this morning she told me that she has had a message to say her mother in Zimbabwe is dying - I offered to release her from contract early so that she can go to her - but it seems she has booked her flight for next weekend and cannot change it as the deposit is non-refundable because it is a cheap airline. No wonder she is all over the place. I will make sure I am around during transfers. Poor lass.

https://signal-corridor.live/uploads/talk/201909/medium-655790-20190920-212629.jpg%3C/span%3E https://signal-corridor.live/uploads/talk/201909/medium-342656-20190920-212654.jpg%3C/span%3E

These publications may be of interest to some of you who may need funding for relatives or people you know, in the future.

By the way, someone upthread suggested that some counselling might help me to manage all this; just wanted to say that today I have been offered free counselling at the hospice. I am very lucky to have this.

So sorry gain strength from your family and take all the help you can get xx

GabriellaG54 - I am not talking about checks and balances but about illegal pronouncements - there have been more than a few of these!

ann - please do not worry - your experiences are valuable knowledge for me. I hope that me posting about this has not brought too many unhappy memories to the surface for you. I have always found your support invaluable.

GabriellaG54 - it is not about whether there are bottomless pits; it is about the law placing firm obligations on both health authorities and SS, which they have no choice but to fulfil. I am fighting the fact that they try to wriggle out of it with delays and obstacles and frank lying - yes that has happened too.

I agree that the government has placed legal obligations on these authorities and then failed to adequately fund them - but that is in a sense not my problem. I just want to do the best for my OH and ensure he has the very best care I can find for him; and that I can find a way of funding this that does not leave me destitute.

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.

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.

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

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.

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.

plan

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.

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.

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.

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

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

Hetty, utterly heartbreaking.