Care at home

General Chat
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We’ve had an unusual (and not very enjoyable, if I’m honest) Christmas and New Year chez Jim. A bit of advice from any of you that are, or have been in a similar situation would be appreciated.

Early in December Ann’s 94 year old Uncle had a stroke and had to be rushed to hospital. The stroke fortunately wasn’t a serious one (a TIA) and after a couple of weeks they started talking about discharging him. Although they wouldn’t let Ann visit him because C19 risk, she was in contact with them by 'phone pretty much every day.

Ann is his next of kin, he’s a single man who never married or had children and only one sibling - Ann’s Dad (who passed away in 2016) Ann is an only child, so apart from distant cousins, she’s all he has.

The person at the hospital who deals with the discharging, after questioning Ann about her Uncle’s place, decided it would need to be inspected by the social services team. Interestingly, his bungalow was originally built from re-purposed railway carriages (see pics). Uncle has lived there since 1941, alone since 1988, when his mother died. He has always been fiercely independent, very stubborn and refused all offers of help.

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Unsurprisingly, as the place is very run down, dirty, damp and drafty, and also has steps leading to the kitchen/bathroom, they said that it was totally unsuitable and he couldn’t go back there. As well as the social team, Breckland CC housing dept also met Ann at the bungalow. The social said that a temporary place would be found for him, then he would be moved to sheltered accommodation run by Breckland CC.

Imagine our surprise then when the hospital called Ann on Christmas Eve and said to come and collect him. No questions about our house mind!
Of course, he wanted Ann to take him back to his place, but his breathing was (and still is) really bad and he can only (just about) walk with the aid of a frame.
Our place has ample room, but all of the bedrooms are upstairs. It became obvious on the first night that trying to get him upstairs to bed would be impossible, so we removed the dining suite and converted the dining room into a downstairs bedroom. Fortunately, we have a downstairs loo, but still not ideal as the only washing facility downstairs (apart from the kitchen sink) is a small basin in the loo.

As well as having COPD with appalling breathing problems, he is also fairly deaf and poorly sighted but has stubbornly refused to wear hearing aids or specs. His lungs are so bad, sitting next to him is like being next to a gurgling drain. (luckily, the telly has to be turned up so loud so he can hear it, it masks the gurgling noises) TBH, looking after him has been stressful - Ann attends to getting his food, drink and administering the various pills, potions and inhalers he needs while I take care of his hygiene. Not a particularly nice task as he tends to be doubly incontinent - not all of the time but especially when has a coughing fit.

I’m coping so far but Ann has been getting pretty stressed, he’s quite short tempered and rude to her (and strangely quite polite with me) We need help though, and I’m wondering if anyone has been in a similar position and can offer some advice?

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All I can suggest is that you get onto social services and kick off Jim. You can’t look after him but his own house isn’t suitable so force the issue with them.

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Nothing particular practical to offer Jim other than my thoughts and very best wishes to Anne and Yourself , as @pbg said , start by getting all medieval with Social Services.

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Can’t help with advice @Jim, but fair play for taking him on even temporarily. It is obviously in his best interests to have professional care so getting in touch with Social Services must be a priority. Best of luck with it all as it is obviously a very difficult and stressful situation.

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That’s a tough one Jim.

Our experience maybe 15 years ago with Claire’s mum and a bit more recently with my step-dad and mum had a few similarities.

Even back then the authorities were under pressure to discharge people from hospital a.s.a.p., but they could, and can, only do this to ‘a place of safety’. In my step-dad’s case (pretty bad vascular dementia) we made it clear to them that back to his home, with my ailing mum, would not be a place of safety, either for him or her. They accepted this (they had to). It took them nearly 6 months to find him a care home place. He spent that time in an, I imagine, extremely expensive gerontology ward. It was brand new and physically very nice (he had an en-suite room of his own) but it was sometimes under-staffed and rarely at all stimulating or homely. TBH he was living in the moment and barely communicative by this stage, so perhaps this didn’t matter so much.

Claire’s mum (worsening Alzheimer’s) had been living on her own but with her sister present and caring for her from about 8am to 9pm every day. She was found wandering out of the town in her dressing gown very late one winter’s night. Social services insisted she needed 24-hour care from then on and while they couldn’t force us to provide that immediately (they’d have needed a court order) they proposed to provide it themselves, using her assets to pay for it. If we prevented that (it seems we could have done) we would have had to assume legal responsibility and become liable (criminally ?) in the event of her coming to harm for want of care. Fortunately Claire and her brother were able to get her into the best of the local care homes very quickly. She had a house and multiple pensions so, while she certainly wasn’t rich, there were no funding issues.

In my mum’s case (terminal cancer for 18 months) she needed a care package in her own home. We came across quite a few people (doctors, district nurses, social services, Age Concern, MacMillan nurses) who were prepared to come round and assess my mum’s needs and provide advice/verbal support. But there were precious few who were actually prepared to roll their hands up and physically do stuff (administer her daily Heparin injections, change dressings, help with incontinence etc - the district nurses were the best of the bunch, but they were ridiculously oversubscribed).

I’d support everyone else’s advice to get serious with social services. Age Concern may be in a position to provide you with help in that.

If Ann’s uncle has any assets then they will come into play in terms of providing for his care. There’s also the question of whether he’s capable of making decisions for himself. If Ann is his closest relative then the question of power of attorney arises. Whether it’s appropriate or practical will depend entirely on the circumstances. But if there is a prospect of him suffering further cognitive impairment then it might be worth looking at that sooner rather than later.

You have my best wishes.

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My Sister was in a similar position last Christmas. Our Estranged Grandmother (96) was in hospital and her home deemed unfit but she remained adamant for her independence. My sister arranged for carers to visit regularly and got one of those alarms you wear as a necklace to call for assistance in case of a fall.
Three falls in the space of a month (The last taking her back to hospital) really was the writing on the wall. Dementia had been present for some time however after the last fall it seemed to accelerate. She was eventually placed in a very decent care home which caused some confusion and distress (Often due to dementia where she thought she was at home and then would realize she wasn’t) Throughout the process my sister was in close contact with a care professional who did have a great deal of experience with similar cases and this was the best ‘anchor’ in the storm - Wishing you well Jim, I hope uncle begins to accept his situation and accepts help it seems in some cases they are happier after the initial transition.

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Fortunately, Uncle still has a complete set of marbles. This is a double edged sword though - he thinks he knows everything that is right for him, and isn’t afraid of saying so. Often shouting at Ann when (he thinks) she’s not doing things correctly or quickly enough…:grimacing:

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It sounds as if he is at that difficult time where a nursing home is needed, but he doesn’t want to go into one. You have my sympathy.
With my mum it was a three month stay in hospital after breaking her arm badly in a fall that provided a gap between being cared for at home and entry to the nursing home. I think that without the gap away from home we’d have had much more difficulty in getting her to accept the nursing home. She was in hospital as long as she was because the dementia wing for the chosen care home was running late in construction, and luckily for us the wonderful ward sister stood up to the hospital accountants on our behalf until the move could take place.
Have you looked at nursing homes around the area?
Until then, as others have said, seek help from the relevant charities. They helped us quite a lot.

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Nursing home ASAP, your relationships will all deteriorate massively if he stays with you.

Find out about the local ones, this will make visiting much easier.

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Now that you have taken him away from hospital I suspect he is much less of a social services priority.
Are you planning on having him to stay long term?

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I suspect so too. However well-meaning individual soc serv people might be, their system pressures them to find ‘solutions’. Unless you really want to be the solution, Jim, then you need to make it clear to them that your care for uncle can’t be more than very short term indeed. And that after 10 days of unsupported care-giving on your part you’re in need of at least a few days of respite care for him immediately.

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I sincerely hope not Mark. There are places far better equipped than here and professionals far better trained than us. Besides, as Adam says we’d go nuts before too long. :unamused:

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Is there not a way of him insisting on living at his own place so that social services have to deal with the issue?
Sounds a bit mean spirited from me but it would get him up the priority list.

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Having recently gone through this, get him into a Care home ASAP. If he has assets he will have to use them to pay for his keep, assume a minimum of £4K per month and that’s for the bare minimum.

Of course that £4k could be used instead to help pay for carers at your own home if you don’t want him in a Care Home.

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From what Jim has told us so far , and If I may say , that doesn’t seem like a workable plan as per @AmDismal ‘s consideration

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This is pretty much as I understand it - been through similar with my mother, but she had long since given away all of her assets to scammers, so it’s on Social Services to house her.

You are probably going to have to “pile-on the agony” with the SS - insist neither you nor Ann are well-enough yourselves to care for the old guy, and that your house is also thoroughly unsuitable and that he is consequently at-risk. Don’t hesitate to escalate your concerns - it’s the chick that cheeps the loudest that gets the worms…

Good luck mate.

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social services dealt with Louise’s mother, she had no assets - we found a home the council were happy to pay for and she was happy with…you need to go see the facilities to get a feel for the vibe. The one we found had a nice vibe with a pet cat and a bar (stopped the MiL) hiding the vodka in the bed) and were willing to give her a ground floor room so she could go outside on to “her terrace” for a fag.

We saw two (maybe three) that were terrible.

In the end she stayed for about 7 months, living longer than anyone predicted - even the hospice kicked her out as she wasn’t ready to die.

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You and Ann have my deepest sympathies, that need to try and care for ones we love is soon tempered by the reality. As others have said, nursing home. I know when my mum went into one not all the costs fell to social services as her care was largely medical rather than"hotel", dont know if that distinction still exists.

Removing him from the hospital will, I suspect, have placed you at the bottom of an increasingly long queue. Don’t be afraid to play the system, a 999 call will readily see him back on a ward if it all gets too much for you before you find a nursing home

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If he is still deemed ok to make his own choices and deemed to have capacity there is no reason why he can’t stay where he wants to and you can’t really get him in to a home if he says “no”.

He should only be discharged from hospital if he has some where safe to go and the relevant care plan in place and any equipment needed, hospital bed, commode, hoists, etc… should have been put in place after an assessment, and if he couldn’t go to his home then that includes your home if he was going to stay there.

I go to several people living in very large houses with 5+ bedrooms who basically now live in their front room and never leave it, so steps, etc… don’t make any difference to where they can live IF it’s their choice and they are deemed to have capacity.

It seems that after an assessment of where he lives and his own day to day requirements that no care package has been put in place, then that sounds a little negligent to me.

As for the position you are in at the moment, until social services get involved and get a proper occupational therapist assessment then you can still go and get a private care package set up if the gentleman has the funds and is willing to accept carers to help him. You can do this by contacting any care provider who takes on private care in the home, but it may prove expensive.

No matter what, you need care of some kind before it kicks off between the pair of you and the stress shows, which it will, and things get worse, which it probably will. Also if he is doubly incontinent then you need all the pads for him and subsequent barrier creams and care to make sure he doesn’t end up with sores and other nasties so you will need some proper form of care in the interim.

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Jim you have my sympathy - It’s tough having to deal with this, it shouldn’t be your problem. I expect Hospitals are in a particularly difficult position short of staff and beds in the middle/start of C19. I thought that a care package being organised was a pre requisite of being discharged?

We went through the care home pain with my Dad but he did actually realise that my Mum couldn’t manage him at home. He went from the Hospital direct to the Care home once we had signed up to a bunch of T&C’s and they trousered six weeks of advance fees.

Jim we all know that you are very resourceful, personally I think you already know that you need to be very tough on both Uncle and the SS to help protect Ann and your direct family. Carers ASAP and Care home. Also when he is rude to Ann perhaps you should remind him what’s happening?

To Bob’s point about an emergency call resort- That’s exactly what my brother and Dad conspired.

Best wishes to you all

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