Urgent full time care at home in 1 bed

[NorthernExpat]

Feeling completely lost as on only child navigating a sudden change in parents circumstances and hoping for some hive mind wisdom about where to start. Have tried to give relevant info and not drip feed.

DF has terminal condition which is causing progressive symptoms (communication problems, memory issues, vision loss, physical weakness, incontinence but still fully himself). Was being cared for at home by DM until a fall which has put her out of action for 6 weeks.

Since then he’s been in a care home as emergency respite. Home say his needs require 2 people to mobilise him, including at night to toilet/change. He hates it there, is 20 years younger than anyone else and most have dementia. He’s physically deteriorated so much in 2 weeks as he’s left in a wheelchair all day.

They live in an accessible but one bed flat. I am an only child, live 400 miles away, work full time, and am 31 weeks pregnant. We are self funding and money not (yet) the main issue. Social worker so far has been useless, no urgency and no suggestions beyond 2x 20 min carer visits a day.

Am terrified he’s going to deteriorate so much in 6 weeks he’ll never leave again and he’s always been adamant he doesn’t want to die in “one of those places”.

So how the hell do I get him back home? Is it possible? What should I be asking for and who from? Feeling so overwhelmed and sad.

It is possibly to have live in carers but it sounds as if your DF will need 2 people to safely support him and your dm can’t be one of them.

will he also need equipment at home for them to help him safely too - a single profiling bed, commode +/- shower chair, mobility aids etc? That will all need to be in place before he comes home and might mean that your dm needs a single bed too if they’ve been sharing a double until now

you could see if a live in carer would be happy to sleep on a sofa bed and then have a second career call at Key times - morning wash and dress, later am toilet call, afternoon toilet call and evening call to get back to bed. It would need to be arraigned privately through a local care agency - anything through social services is taking a very long time atm

A live in carer needs a room to themselves, but it sound as though your Dad needs atleast 4 visits per day with 2 carers. Care is hard to source now though. Keep on at the sw it's tough though

Thank you both. Sounds like we need to try again with the social worker but also start talking to some agencies direct about what they can provide. Am kicking myself I didn’t think about the second bedroom when they moved to a more accessible property.

I would get back to the social worker again. My NDN is bedbound and has two carers visiting at least six times daily - first visit around 7am and last around 1am. This level of care is clearly possible and I imagine easier if DF is self funding.
It should be even safer if DM is also at home, although not solely responsible for care. He may need his own bed in the lounge though.
Good luck to you all.

Bless you, that sounds so stressful and not what you need right now!

Do they own or rent the flat? I think moving them to at least a two bed as quickly as possible will be key to getting him home. Possibly even a 3 bed (1 for him, 1 for your Mum, 1 for carer?)

Oh that's hard. Talk directly to agencies; social services, specialist, Age UK or GP might have ideas of local ones. Make sure everyone involved knows you aren't available to help. It may be that a different care setting is needed til your mum recovers or they can move- we can't always abide by our parents' wishes if it's impossible.

As others have said, ask the social worker to refer to OT's for an at home assessment. He will probably be set up in a micro environment in the living room and they'll need to put a care package in. If he has mental capacity then they can't keep him at the home against his wishes. Do you have power of attorney for health and welfare?

Has he seen Occupational Therapy? Is he getting Physio too? I'd talk to the care home about arranging those things as they should help to stop the rapid deterioration.

As for the SW, has he had a formal Care Needs Assessment? If not, I'd arrange one of those.

Don't feel bad about pushing the SW either, I phoned DMIL daily when we were sorting out her care.

We found that when you are self-funding it's all left to the family to arrange which is overwhelming when you have never had to do that before. We used an agency called Blue Bird Care, I'm not sure but I think they have branches nationally and we found them very helpful.

Could your parents rent a two bedroom house with immediate effect and rent out their one bedroom to someone else ?

Thank you all - OT and physio sound like immediate priorities to try and keep him well while we figure out care. And yes definitely seems like as self-funders there’s a lot you’re expected to somehow figure out at an already stressful time.

If you are self funding then don't waste time chasing SS for assessment. I have also used Bluebird and found them to be very good. They would communicate directly with me which really helped. They were also flexible so I didn't have to commit to a binding contract until we had sorted out just how much care DM needed.

Sorry I hadn't realised, though Hod knows why, that you were self funding. Yes, definitely skip the assessment.

Why do you need the social worker to sort it when they're self finders? Just go and organise direct with an agency. You don't need to be local.

Social services are massively under pressure and you're more likely to find care if you're private as care providers mysteriously have capacity for self funders when then don't for council.

I would still talk to OTs about this, going forward. If your DF's needs are for health/nursing then he may be eligible for fast track CHC assessment and many people don't realise that you can have CHC whilst remaining at home, and that packages can be arranged by the OTs.
I've seen fast track CHC kick in within 48 hrs of the request being made. So just make sure that he's not eligible.

If he needs 2 people for care, that will be very hard to manage at home.

Care you find a better care home with more engagement and therapy? If money is not a major issue, that are lots of options.

My OH needed two to mobilise and transfer - we were supplied with standing aid, commode, walking frame etc. etc. Please do not try to manage without these things at home.

We had a live-in carer, but .... we had a spare room. I do not think any care agencies will accept less for their employees - however we did manage to put up a sofa bed in a conservatory when my Dad needed live-in care and they only had a one bed bungalow. You will need to talk to some agencies.

However, I cannot pretend that a live-in carer is an easy option - it is incredibly disruptive, and many of the carers, although very kind and willing, do not have English as a first language. As well as trying to meet my OH's demands, I was also trying to keep the carer happy as regards diet, time off, TV etc.

If live in care is out of the question, could you find a better care home? There are a few for younger adults - but a bit like hen's teeth.

People bobbing in and out at home for 20 minutes each time does not work - OH always needed toilet the minute they left and I was left struggling to cope with transfers, catheters, suppositories etc with a bad back.

I hate to say this, but I suspect that finding a better home is the only option in the short term - finding care at home in such a small home is going to be a challenge. The necessary equipment will take up masses of space that I am guessing you do not have.

I am so sorry to put this bluntly, but if your father is terminally ill, or has an incurable illness, some hospices will provide respite care - our local one did for my own OH - he had Parkinsons. Maybe you could approach yours and ask for help till your Mum is well - although do not forget that even when she has recovered, lots of care in the home and equipment will be needed.

I hope that you manage to find some solution to this seemingly hopeless problem.

Continuing Health Care funding might be an option - care paid by health authority and not means-tested - based on medical needs. But even if you got this, it does not solve the problem of providing the right care and equipment in a small place - it just means you do not have to pay for it - and it sounds as though money is not the main stumbling block at the moment. My OH got CHC funding on appeal - after he died. www.beacon.co.uk will advise on this finding - for free.

To get the right equipment you need local authority Occupational Therapist involved - you can make that referral yourself.

I would look into CHC assessment & funding which may be available if your DF has nursing needs, as suggested above, to support with care at home. There is information on NHS website or gov.uk. However, it's not always an easy process and you often need lots of evidence to support, but care home should have that. In my area we have neighborhood teams who have access to physio/OT/district Nursing team/carers/team and countless other agencies which may be an option. Care home may be aware of what is available locally, or perhaps your DF's GP practice may be able to signpost.

Thank you so much for this, a dose of realism from someone who has lived through it is no bad thing. Seems like we need to think hard about whether getting him home is the right thing just now:

And thank you all for your tips on talking direct to care agencies/ looking at other homes ourselves, it sounds like getting assessments etc from social worker might be a red herring. On the plus side we have started the CHC process, and good to know it can be fast tracked before funding does become a barrier.

If his needs stem from having a neurological condition or similar, rather than social care / personal care relating only to old age, then your father should be entitled to NHS Continuing Healthcare. It's well know to be a fight, more often than not, but it's worth starting the process now while you get more immediate needs sorted. You may need lawyers, you may have to reapply, and so on.

There is a Continuing Healthcare Alliance of 20 charities covering a wide range of relevant conditions, and here is one link to the information about it:
www.parkinsons.org.uk/get-involved/continuing-healthcare-alliance

The campaigning stuff is at the top but information about the CHC is further down.

Here is the NHS's own information:
www.england.nhs.uk/healthcare/

It's very concerning, and has been in the press again very recently, that this system has many many faults, see here for example (from 2020 but covers it clearly):
www.ombudsman.org.uk/news-and-blog/news/nhs-continuing-healthcare-failing-provide-care-most-vulnerable-says-ombudsman

But if you don't apply for it, you certainly won't get it!

There is also a link from the Parkinson's site to Beacon:
www.beaconchc.co.uk/

If you consider the enormous sums often involved, then paying for the right representation from a good company might make sense, either initially or just if/when you have to appeal, depending on how much time and effort and inclination you can spare for a DIY approach initially. I had a free initial chat with them once about someone in the wider family - it was useful, they may use them in the future.

Another thing you might do is look at annuities for paying for care. They aren't cheap (far from it), but cover care for the rest of the life covered. I don't know much about them but went to an interesting talk at an exhibition about them, had never heard of them before and apparently the problem is that a lot of people haven't and they could be a more appropriate way of funding care for some people than the one they are choosing. One provider is here:
www.legalandgeneral.com/adviser/retirement/care/lifetime-care-plan/

I am not personally recommending any of these companies or charities by the way. Just mentioning these things as a starting point for you. Good luck with it all

I'd like to add something about whether to bring your father home or not. Another relative was in NHS-funded 'rehab' care in a care home after a spell in hospital, was promised it was the best thing for them, physio 3 times a week, etc. etc., and honestly, it's something we won't be doing again. Promises were not fulfilled, and they were bored senseless the rest of the time with not enough help or interaction to do meaningful things they enjoyed (even phoning was a palaver). Appropriate care at home would have been much better even if we had to draw in private help from more than one source. The person concerned bounced back (just about) when they got home but definitely deteriorated and they'd already deteriorated when in the hospital previously due to the same boredom etc.

I grant you that this isn't the right solution for everyone, and that you shouldn't rush to get your father home but rather should take sensible decisions in a timely manner which will work in the short (but not super-short) and longer term. The amount of appropriate care including that which fuels their mind and spirit (which is very important in these situations) that is available in most of these places and frankly on many hospital wards is poor. There is a lot of physio and OT support available in the home (this same person had physio at home on another occasion for 6 weeks, NHS funded. There are district nursing visits available including daily and out of hours, and so on. You may have to push and wrangle and it is very draining but it should be available (on the NHS immediately) and you can augment that with private help.

Sorry I didn't ackowledge previous poster who had written about CHC as I hadn't seen it at the time I was writing.

If the care home are saying your father needs two carers then your mother is not going to be able and shouldn’t be managing by herself as its a risk for both of them.

Thank you Marotte, really appreciate the links and hearing your own experience.