Live-in care vs residential home

[Noitsnotteatimeyet]

My dad is 90 and very frail. His mobility is decreasing (shuffles around v slowly with a frame but is basically housebound) and he's profoundly deaf. His cognitive abilities are starting to decline quite quickly too - he's forgetting things and really struggling to follow quite simple instructions etc. He's been on his own since my mum died a few years ago - she was much younger than him and had effectively been his carer for their last few years together.

He's very stubborn and has been fiercely resistant to any formal package of care. We've got a hodge-podge of me and my siblings, neighbours, old family friends and his cleaner popping in at various times so that most days he sees at least one person. However he's had a series of mini-crises which means he's no longer safe on his own. He's currently in hospital after two falls last week but there's nothing really wrong with him medically so the doctors want him out ASAP. He's probably going to be transferred to the local cottage hospital for rehab which gives us a couple of weeks' breathing space so we can try to work out how to support him best.

What are our options? Is it a live-in carer vs nursing home? He can't come to live with any of us as none of our houses would be safe or suitable without thousands of pounds worth of building work...

He's had a package of carers coming in four times a day before when he's come home after previously hospital stays but he's hated not knowing who's going to turn up/they come at the wrong times etc so I know that would be his least favourite option

Hi OP. Older persons social worker here.

There's quite a lot to answer from your post but I am going to try. What I want to say first though is that there will be an adult social care discharge team in the hospital and you need them to assess really. Without knowing and assessing your dad it is difficult to advise you so I will try to be general.

Firstly, broadly speaking, if your dad has no doagnosed cognitive impairment e.g. Dementia, he is oroentated to time and place (knows where he is) and has an understanding of his care needs (my daughter has to do my shopping, I need a frame to walk etc) then he probably has capacity to make his own decision.
He will not be forced to move into care home if it is not what he wants.

Secondly, does he have overnight care needs? If he doesn't, the local authority will not fund a care placement. It is the last resort and will usually be if there are risks that can't be managed at home, for example wandering.

Local authorities rarely fund live in care. Depending on area it will be around £850per week. If your dad has over 23,250 in savings he will need to pay the full amount.

Where I am, we have 'extra care' - your own flat in a block with care staff if required. It's a great third way if Dad will consider it.

Please feel free to PM me if you have any questions. But definitely tell the ward to refer to adult social care for an assessment before discharge.

It sounds like a nursing home or care home would be best unless he's adamant he wants to stay at home .
Could he afford 24hr care and put up with the carer needing time off and a new one coming in?
I go into lots of nursing homes in my job ..there are some lovely ones .
Is he aware of this impending change ?

Thanks - he's not got any formal diagnosis but he's currently very confused and disorientated. He's also extremely weak, unable to stand up even with help so there's no way he can go home like this.

He does have some savings but not an enormous amount as most of his money is in his apartment - he also has a generous final-salary pension so he's by no means badly off financially so presumably we'll have to pay for any care he needs

I don't think live-in carers are going to work and he's too disabled now for sheltered housing

He's still talking about going home but he'll need to improve dramatically if that's ever going to be a realistic option

My mother has a live-in carer - she has dementia. It does cost a fortune but she is lucky she inherited from her mother and I am using that money to fund it - it is enough for a decade and then there is the house if needed. It is brilliant as she has a fantastic carer who takes her out every day and cares for her in a way I am so very impressed with - she's worth her weight in gold. She takes her to appointments, to carol services, to the shops and exercise classes or just for a walk every day. Physically she's OK, although bent over and unsteady - has been in hospital after a fall with fractured ribs and pneumonia, but that was before we got her fab carer and she's not fallen in the last 2 years.
I'm sure she wouldn't get that level of care in a Care Home. I do appreciate that most can't afford 3125 a month - her state and NHS pension (she was a nurse) covers half and the rest comes from investments. But anyone who can should consider it. I know we are very lucky.
Best of luck with your situation.

Adele, do you employ the carer directly or through an agency?

Asking because I am trying to do it directly and though both carer and I are happy with terms, there are all sorts of issues with European Working Time Directive opt outs, job descriptions, employer liability, and next year compulsory pensions. I feel I have become a mini personnel department.

OP I'm sorry to read your situation, I know how difficult it can be.

I'm a huge advocate for live in care, my father has live in care at home following a massive stroke, the carers looked after him until he died recently. We chose this option because he needed one on one help and a care home would not have been able to provide him the same standard of living or quality of life. However, live in care is not for everyone and homes have a role to play. Neither transition is easy.

Live in care is easy to set up through an agency, usually can be done within days. The only disadvantage is you will see a regular turnover of carers every two weeks or so, this takes a lot of getting used to for the client and can be hard as you find the right ones to keep coming back. It keeps the client in their own familiar environment but can be lonely and if your father doesn't get on with certain people, stressful for him. However, he would be safe, well looked after and retain a little independence.

Care homes are more sociable environments with more access to people. It sounds like your dad would be the right age profile (problem for my dad also was that he was only mid 70s so a very different demographic to care home residents, where the average age is 85+ and it's overwhelmingly women), but he might be in a minority as a man so it's worthwhile asking ratios when you visit.

My suggestion would be that with the doctors help (as an independent third party recommendation - older people respond well to this input in my experience), you firmly present your dad with the option of live in care or care home for the long term. Your current arrangement is not sustainable. Personally I would advocate getting live in care to cover the transition period until you have viewed lots of places and a room becomes available in one that you like. This would also lessen the shock for him and and allow you time to understand the differences between local facilities and choose the one you like best.

adelie I'm interested in your post, what stage of dementia is your mum at? Do you see her being able to stay at home once more risks and behavioural changes start appearing?

mooey in your experience where do you see most dementia patients being looked after in the mid-late stages of the disease as I know they're very different to early stage?

hi everyone,
My mum - her dementia is such that she is on medication that helps her sleep. Out of unfamiliar environments she is awful - in hospital they had to "special" her as she wouldn't stop pacing or settle at all - it was awful. She does not speak much and doesn't recognise grandchildren - or me, I am really not sure she does. Familiar routine and she her behaviour is OK. Odd of course, kind of likes everything on her table in the same place and will pick and replace them over and over again. Stares at the TV but not sure she takes much in. Her carer stops her dangerous behaviour (e.g. picking leaves off the road, will steer her to the garden where she will pick up leaves by hand) and seem genuinely fond of her. Slowly getting worse and fluctuates - sometimes will surprise me and come out with a sentence, but this is very rare. Eats well but awful to watch - shoves it down. Wear pads as no bowel control now.
I think she is fine for now at home but they may come a time when she has to be moved - I think it will be when her physical health declines - she is a large lady and would be impossible for one carer to move. It will be awful. Now sleeps Ok but a trip out in the day helps - like a small child!
She is only 78.
We did go through an agency, so the carer has a day off a week and holiday covered.

Hi Adeline, I'm so sorry you're having to see your DM going through this, it must be awful. It's great to hear that things are working for her as best as possible at home and it sounds like she is fairly late stage. I was asking because my DM is probably middle stage AD and at home with live in care but things are deteriorating quite quickly and I don't know at what point we will have to put her into care since I'm not sure carers will continue to come. I don't want to derail this thread so hope it's of use to OP and thanks for sharing

Hi, can I join in? My DM is in hospital at the moment. She's had a diagnosis of Parkinsons for 3 years, and has declined rapidly over the last 3 or 4 weeks. She's in assisted living (essentially sheltered accommodation but with extra support on had if required). She moved there a year ago, and I am so glad that we made that step then (she lived 200 miles away and I am her only child) as she wouldn't have been fit enough to move now. She had a fall tring to get out of bed at night on Thursday and has been in hospital ever since. Hospital phoned at 6.30 this morning to say she's fallen again (I am very concerned about this, as she's supposed to have support to move around there) and she's become very confused, shouting at staff - once again very worrying, as she's shown no signs of dementia previously.) I'm not quite sure where we go from here really. I feel that hospital seems to have triggered a rapid a worrying decline, but I'm not sure what other options are open to us. I am meeting the manager of the assisted living complex next week to see how much support they can give her, but I can't see her being discharged anytime soon. Don't really know what I'm asking you lovely people, but would really appreciate your support - this is a whole new ball-game for me, and it's one I feel ill-equipped to deal with.

Getting old is a real shit isn't it.

It is well known that elderly people with cognitive decline are much worse out of their familiar environments and it may be the case with your mum in hospital, Obi - it certainly was with mine. it is so hard isn't it, deciding what to do. With my mum we went rapidly ( within a year) from no carers, to twice day carers, to four times a day carers, to a hospital admission and then realising 24 hr care was needed. She has never been as bad as when in hospital though. Bear that in mind. Make sure they have ruled out infection too - a major cause of confusion. Probably though, it is the environment - loud noises, lots of different people etc.

Thanks Adelie - yes, they said they would check for infection. Your post is very helpful - much appreciated. Up until now Mum hasn't had any specific extra support, but that will have to change now. I am really hoping that she can return to her assisted living complex, but I'm not sure whether she will require a level of support that's outside their remit.

Sorry to hear how quickly your Mum went downhill - that must have been very difficult for you.

My Mum's 78 as well. Dad was quite a bit older, but in good health until his last couple of years. He died 3 years ago, and Mum's health has declined since then.

It is unnerving how young dementia can hit. I am happy to offer advice to anyone. The worst parts were before we know what we going on. She had odd events up to 10 years earlier. . Her husband had terrible health and was unable to cope (he was close to dying). I remember it being breaking point and going to stay overnight as she had been up and down all night for several nights with abject terror - imagining people in the garden, a real psychosis. I physically stopped her from calling the police so many times. I called the GP out (it was a bank holiday of course) and will be forever grateful that he arranged admission as he correctly assessed the awful situation. A short course of anti-pscychotics and she was back to normal, normal for her then.
Memantine is the medication that helps her settle at night now.

It is unnerving how young dementia can hit. I am happy to offer advice to anyone. The worst parts were before we know what we going on. She had odd events up to 10 years earlier. . Her husband had terrible health and was unable to cope (he was close to dying). I remember it being breaking point and going to stay overnight as she had been up and down all night for several nights with abject terror - imagining people in the garden, a real psychosis. I physically stopped her from calling the police so many times. I called the GP out (it was a bank holiday of course) and will be forever grateful that he arranged admission as he correctly assessed the awful situation. A short course of anti-pscychotics and she was back to normal, normal for her then.
Memantine is the medication that helps her settle at night now.

I have been through all this twice as a daughter; and I was a SW for many years. So I understand what you are all trying to deal with.

Both my parents did not want care that would eat away at their savings which they had hoped would come to their children; but rules are rules and they had no choice in the end.

Do not forget Continuing Care - the NHS are obliged to pay for a person's care, either at home or in a care/nursing home, and this is not means tested at all. My Dad got this when he left hospital; but when he went into a care home he lost it, quite rightly as the good care improved his condition and he no longer qualified.

I have to be honest and say that the 24 hour care we tried to arrange was a total nightmare. I think it was made worse by being out in the country where care options were limited. I was trying to co-ordinate it all from 150 miles away! The first carer that the agency put in left after 24 hours without telling anyone! Subsequently he had a carer who was from a very different culture and this did cause lots of problems - her absence of professional detachment caused my already confused father to behave inappropriately with her. She also tried to undermine what we as family were doing and that was very hard.

In the end he went into a home (where my mother had previously been) as he began to realise that it was not working at home and something needed to change.

The cost of the care at home was huge as the 24 hour carers are limited as to how many times they can be woken in the night, so we finished up with night carers as well. Mega bucks indeed! - but thankfully being covered by NHS.

I wish you lots of luck with this harrowing task. Do you have a power of attorney? - luckliy we did and it was a great advantage.

I missed a bit of the sentence about continuing care funding - the rules are pretty strict and you only get it under certain circumstances. If you are told that someone does not qualify it is worth pursuing as most health professionals have virtually zilch training in it. The truth of the matter is that there are thousands of people who do qualify who do not get it through misinformation - TBH the NHS would go bankrupt pretty darn quickly if all those entitiled actually got it.

If you do go for the live in care option - and I agree this sounds like the best bet for many people - make sure you carry out checks on who is coming. There was a very concerning article in the Torygraph today about unregulated workers, predominantly expat Brits, recruited from Spain coming back to UK to work for agencies which are outside the juridiction of the CQC. The drive to cut costs may lead to further reductions on the already abysmal standards offered by some agencies. Your relatives are very vulnerable.
www.telegraph.co.uk/news/2017/01/01/jet-in-carers-fly-benidorm-britain-amid-massive-care-crisis/

Needmoresleep if you want to find your own carer but leave the payroll and HR part to an agency, Nanny PAYE companies also do carers. I've had a very good experience with payefornannies.co.uk. They charge a fee for the year than includes registration and payroll processing and give advice on pensions etc.

Tried them. Probably great for nannies but not a good enough fit for carers. The PAYE/NI part is the easy bit. My accountant has the software, so gives me the numbers every month and it was fairly easy for me to set my mum up as an employer. It's the Employment contract side of things. There are an awful lot of regulations and you need to get it right. (I just spotted the bit about night time carers only being allowed to be waked up a certain number of times a night - another thing to know!) Nanny tax people do not cover this. And seemed expensive on the payroll side. (Indeed having done it myself I would not bother with them for a nanny either.)

How much does live-in nursing care cost for 24/7 care. Think bed pans, needing help to move in the bed, washing and attention to a pressure site on the sacrum. Basically high nursing needs. I think dad needs a nursing home but really worried that the hospital are going to try and strong-arm my poor mum into dealing with all this. They have no funds other than pensions!

Popping back here after months away ( got a lot of support here but both my parents have died now ).

My experience is, as a relative that when dad (dementia falling all the time ) was at home with mum ( kidney/ heart failure awful mobility but mentally good till the last few months ). That they just about managed - and probably were on the only just about side for ages. It was only when mum was admitted and dad went into respite that we actually knew the extent of his care needs.

If people are getting up / falling/ wandering at night then a residential home is probably the best option. This was what dad needed.

When mum died he had a long time in the respite unit that had had him several times and knew and loved him . He then moved to a care home near me specialising in dementia. It gave him a new lease of life and quality of life - he walked more ( never went out with mum as she was so ill) socialised after a fashion , ate better and put on weight ( mum would share a ready meal for one with him because she had no appetite and he of course politely ate what he was given and said " that's fine" because that was his learned response in that situation- he didn't know what hungry was or if he felt it I reckon- ate like a horse at our house !

So a good home can be a good thing - or at least the " least worst " choice.

We had a 24hr live in carer for mum when she came home to die. I posted a lot at the time. I still have mixed feelings. On the whole it was really good as mum wouldn't have come home (I couldn't have done it by myself). There were a lot of buts though...

Did you know 24 hr carers are basically supposed to be able to sleep at night. Of course you can see that logically. We had Chc funding and a waking night carer too. If it had been for dad it wouldn't have worked as he was getting up a couple of times a night minimum. Also I was really confused initially. The carer was Muslim - fine - but 5x day she went off to her room for 20 mins to pray. At that point mum was really not ok to leave for 20 mins. I was there so it was fine - but apparently regular breaks are to be expected and a 24hr carer could even pop to the shops. We also found she was a learning disabilities carer and had never managed a death at home!! Fortunately that's part of my job , so whilst I was crap at the caring , death I could do!

So from my experience I'd struggle to employ a 24hr carer for sole charge if an old person with significant needs. I've employed a sole charge nanny before and this feels so different. Probably because babies needs are more predicatable and lessen over time. I dunno.

Rambling but hth a bit. Pm me if I can help at all

You make me realise how fortunate my mum is. She's had the same main carer for 2 years now. She is a young South African woman and delightful. The care agency owner said she was fantastic and we were lucky she had just become free. They were so right. Tuesday is her day off and if I visit then I can see how the relief carer is not so good! Her carer does my mums nails, she always dressses her with care so she looks nice and really cares for her. At the moment my mum sleeps 11-530 and she is ok with that. Seems too early to me! I think she's a saint.