Hospital Discharge - Nursing Home or Our Home...,

My husband (92) has been in hospital since March, after falling several times and leaving him with a bleed on the brain and concussion. He has since developed Alzheimers, which is in the early stages and did have a Psychotic episode, which well under control . He also has severe arthritis in his knee which is a bother and has been the cause of many of his falls, and he is now using a wheelchair.

On Wednesday this week there will be a Meeting to decide when he should be discharged and if he can return home or be placed in a Nursing Home. His wishes are that he should return home - or stay where he is - but is adamant that he does not want to go to a Nursing Home. My wishes are that I have him home with a full Package of Care - as promised and that we are entitled to! Unfortunately a family member is against this, says that I am not well enough and that I would not be able to look after him. Also that Carers are always letting people down and probably won’t turn up half the time! This I find very negative and it is causing me some depression. I want to try for a short while at least to have him at home so that we have no regrets later. Has anyone else been in a similar position?

No advice but good luck.

Hello Sandra

So sorry to hear about your husband.

You do need to think about your ability and capability to care for your husband and yourself.
Your family are concerned for you due to your own health, that is an issue that needs to be considered.
It is odd that he would rather be in the hospital than a care home.

Having your husband home and seeing how it goes is a good idea especially to know that you tried and you did your utmost for him if it becomes too much for you but if you are well enough to do that, you are putting yourself under a lot of stress and both of you in danger. Could there be the opportunity for you to be in a home together?

When it becomes too much for you what is the process then to get him into a home?

Before you have your husband home ask what happens if it gets too much for you and he needs to be in a residential home what is the procedure.

There is a big push to give care at home to save on costs and for reducing the demand for limited care home places.

Yes there are occasional no-shows from care companies but if you are there then you can phone the company and ask them to send a carer or supervisor out to see to him. If you have a social worker you report it to the social worker, if you are funding it privately you tell them not to charge you for that call.

Know and understand the care package.

As mentioned there is a big push for care at home, to ease the burden on demand for care homes and reduce costs.
They are probably not considering your capabilities and physical health in your ability to give care.

If they haven’t explained the care package you need to know exactly what it is.
Also exactly what isn’t in the care package.

Carers coming 3 to 4 times daily, for 30 minutes each time.

Outside of those calls, you will be providing all that care and throughout the night unless they provide an all night carer if he warrants one.

At the meeting I was told that my husband needs Nursing care and I was offered 4 visits per day; also a night sitter/live in Carer was suggested, who would be sourced from a London based agency (we live in Wales) and who would work on a 4 week turnaround, then someone else would come in. All of this is to be funded by ME as the authorities, as I understand it, do not fund night carers. A Stedy will be provided for him and the OT would like a Hoist too. If the Hoist is used, two qualified Carers are required to use it!!. The cost of all this is unbelievable - around £1,800 + hidden extras, per week - and I don’t know how we are going to pay for it all!

Sandra, what do you have in writing at the moment?
Google NHS Continuing Healthcare Framework, and start reading.
From what you describe I’m afraid your husband’s needs are so high that he needs full time nursing home care, otherwise you are going to be a prisoner at home for the rest of your life, and your health will quickly fail.
Continuing Healthare is entirely free, funded by the NHS.
Insist on a CHC Assessment asap.
No one wants nursing home care, but you have to concentrate on the care that your husband NEEDS, not what you or he want.

Exactly as Bowlingbun said.

You need to be pragmatic about this, it all boils down to his care needs and the best provision of them for his quality of life - but not at the expense of your quality of life if it is physically too much for you and financially if there is no CHC help etc.

He wants to be home.
You want him home.
Are you truly up to giving that care all day, every day, every year, except for the brief carer visits?
What about his condition deteriorating and you becoming less able to give that care?

He qualifies for full nursing care, it’s not what you want and would be devastating and heartbreaking to do, but they have a team of care/nursing people around the clock 24/7
It is no bad reflection on you taking that option, it is a sign of strength, courage and acceptance/honesty of the situation, terrible and heart wrenching as it would be.
If that is decided on, be kind to yourself, be your own best friend looking at the positives, because it would be a positive not a failing.

At home it is mostly just you in the daytime and a sleepover carer.
To do the work of a team of people.

This is terribly blunt, but the facts need to be considered pragmatically.
It’s easy for me to do this from my keyboard, looking from the outside.
Obviously it is emotionally stressful for you both and very hard going.

My mother elected for her end of life care (not yet needed) to be in hospital.
She didn’t want it at home, she told me that I am not a team of people and she doesn’t want me being made ill doing all her care 24/7 outside of the few daily carer and nurse visits, she said I have done enough - she wants the hospital team to do that and we have quality time together, they do all the nursing and we just focus on each other.

She also said if there are any complications she is already in hospital for them to deal with it.

It was upsetting, it took several weeks for me to accept it, my head knew it was right but my heart was a different matter. I am ok with it now, but when that time comes, if that’s how it goes, it will be upsetting but it is the right decision as I am a sole carer.

To be honest it is a relief that I won’t have all that care and end of life to do on my own family wise, in every sense, physically and emotionally. It might not come to that, but it is a massive load off me.

My husband is now medically fit for discharge and with the exception of his arthritic knee, which can cause him to fall. He is no longer sectioned - I have been told that psychosis episode was probably brought on by a severe urine infection, bleed on the brain and concussion. All from which he has now recovered. Since entering hospital, he is has been confined to a wheelchair because of his knee and he is not encouraged to walk at all. He also has early onset Alzheimer’s.

This week a local Care Agency offered me a full Package plus of Care with a 24hr live-in Carer and 4 visits per day. This amount of Care is required by the Social Workers who say that my husband sometimes wakes-up in the night (which he’s always done) and wants to use the toilet (he is not incontinent). He sleeps all morning -after breakfast- all afternoon until teatime, and again in the evening. He rarely connects with the other patients in this Mental Health Ward - understandable in the circumstances - but is conversant with the Nurses and Doctors.

To conclude, there is to be a meeting here next week of various Social workers, Ot’s, Advocates, Care Agency owner with Manager, a Care Home owner, Manual Handling Instructor & Advocate, and others, all to talk about his needs (again) and to check that various accommodation requirements for Patient & Carers has been met & prepared. All necessary equipment is now installed - Steddy & Hoist (we have accumulated everything else needed over the past 2 years). Wish us luck, please! If it does not work out, then we will try something else!

Good luck Sandra, I hope it all works out.
I hope you have a robust Plan B but that you won’t need it.

After a further meeting, my husband will be discharged from hospital and return home on 26/9. He will have one Personal Assistant (24/7 live-in full-time Carer). Food and accommodation to be provided by me. No day-time carers

The Agency fees for the PA are approximately £1,400 per week, to include replacements as and when necessary; we will have to pay up to £950 per week to the Agency (exact figure not yet received). The Authorities will pay the difference - which is approximately £450 per week - again, directly to the Agency.

I am passing on this information about Payments because although I thought we had prepared for our old age we never, ever, thought we would have to bare these sort of costs. Neither of us has ever been unemployed and worked hard all our working lives. We are not well off but live comfortably and carefully. My husband did receive Attendance allowance for a while, but this has been stopped whilst he is in hospital; we do not receive any other payments. I had been told by one of the Social Workers to apply for 25% Rates reduction, but the Application was refused by the Council? (at least I tried!).

That’s all for now. Thanks to all for your thoughts and advice, it is appreciated

I hope it all goes well for you both Sandra.

I don’t understand why you have to provide food because if the carer was working from home they’d provide their own meals at home and a pack up for lunch. That beggars belief to me.

For many decades I’ve said this is a great taboo that needs to be broken and part of life skills taught in schools, reminded in college and universities and the NI raising for provision for elderly care.
But they are young and invincible and have better things to do with their disposable cash, it will fall on deaf ears.