Live in care vs a care home

[Elderlyparentquery]

My 74 year old mother has Parkinsons, and after a few falls and weeks in hospital she cannot transfer by herself (staff use a Stedy), or really mobilise safely either. She also has fluctuating confusion, and we're not sure why (and can be worse at night). She would be self-funding care, and someone told us that live-in care might be better for my mum than a care home. I think live-in care might give better quality of life than a care home, and would mean she would get her Parkinson's meds on time. Unfortunately her current abode is a one-bed retirement flat, so she would need to source a 2-bed flat to have live-in care. We also don't know what the prognosis is, and that makes it tricky. We also don't know if she would manage having someone in her flat all the time, at the moment she gets very suspicious about the hospital staff. And any 2-bed flat would be a completely new environment for her. We are also wondering how live-in care works with someone who has confusion? I have carers myself, but I can tell them what I need them to do.

Does anyone have experience of live-in care with someone with confusion? Or should we just opt for a care home?

Can one person transfer using a Stedy or does it take two people? Carers had to come in pairs to my DM. If she needs two then she has to go into a home. Also, she clearly isnt going to get any better so after all the fuss of finding a two bedroom flat she might need to go into a home anyway.

Why wouldn't she get her meds on time in a home? A good one will manage it. And will have 24-hour staff, which you won't get with live-in care unless you get her a 3-bed place and employ multiple carers.

There's also more stimulation in a care home, and easier access to more equipment as her condition progresses. A GP will visit the home at least weekly - no need to make appointments or get to them.

If money permits, which it probably does if you're considering live-in care, the best thing you can do for her at the moment is probably to organise intensive physio. Two or 3 times a week, and daily exercises between sessions. That could make a huge improvement to her mobility.

The confusion could be the Parkinsons, or could be a lingering effect from the hospital stay. If the latter, it should reduce over time.

I'd agree with PP that since you're going to have to move her to a new home to facilitate a live-in carer and that if she does require help at night, you probably need two carers to juggle 24hour care, you would be better off moving her to a care home. Good luck with this decision and I hope she gets out of hospital soon.

In this situation I would choose a care home.

Live in care would be very expensive as you would need more than one carer to provide 24/7 care. Then there would be cover for holidays and weekends. Not to mention the cost of moving to a bigger flat.

Sounds like she'd be better suited to a care or nursing home. My father is in one, huge room either ensuite, daily laundry, excellent food, nurses on hand 24/7, frequent GP visits, plenty of company, activities and stimulation. Because he leaves his room to eat and take part in activities he's getting far more social stimulation than being alone at home with live in carers. (He'd need at least 3 to cover 24/7 with shifts, days off etc and it would cost more than the care home.)

As live in care would involve a house move, I would go for a care home. If she has a good pot of funding then it’s possible to get a bigger room which might give the feeling of her own apartment. However as she’s only 74 she may be needing to self fund for a number of years.
Home care still needs someone- likely you - to maintain property, pay bills and coordinate carers. With Parkinson’s your DM is likely to have to move into a care home at some point and better doing it now when she can still hopefully adjust.

My ER had a live-in carer just after her husband died. She didn't really need it then.
The deal-breaker came quite soon - the carer didn't like cats, so not only were there ructions when she caught the cat napping on her bed, worse still... She stamped her foot, the cat ran off, and she laughed.
As you can imagine, she was gone within the cancellation/cooling off period.

The thing to consider is... Well, this is what I've seen with my ER. The carers she gets on best with are the more experienced (usually, older) ones. And they're the ones who, quite understandably, have a life and a family and want to sleep in their own bed at night!

They aren't usually the ones available for live-in care.

My ER's care needs now (pretty much bedbound) are such that we would be looking at a nice care home for her discharge, if money was a concern. If you get past 4x care visits a day, it's normally cheaper to be in a care home.

However: she's not suffering from confusion. Any overnight care would be to provide reassurance and help with the commode.

She's not going to be, say, sneaking down the road after dark and hiding from the frantically searching carer (who she believes is poisoning her).
Care homes are usually built to make "wandering" difficult.

The other thing with live-in care, is, if all the carers - and there won't be many - are great, happy days. But you are literally living with them, and if you don't get along, it's not like a care home, where you may find Carer X winds you up ... but she only works so many hours, goes home after her shift, and you can usually ask for another carer if you really don't get on.

Very long way of saying, it sounds like a care home - for "respite" at least to start with - may be the least worst option for your Mum. But it is a very individual decision.

I would choose a care home in your position.

We had live in care for my DF for 2 years. We’ve now moved him to a care home.

Whilst live in care was the right choice for a while in our case (crucially, we already had space) our experience and the reason we had to make the change was:

1. It’s really hard to find good carers who are the right fit, and when you do find a good one, they need their time off ofcourse and sometimes are sick etc. They can’t work 24/7. This was extremely stressful as it felt like one cog failing, meant the whole system broke. In a care home, there’s always a whole team.
2. When DF became iller and the nights required as much care as the days, if not more, you need 2 live in carers, as a PP said. Double space, and double cost. Double stress if a cog fails.
3. The impact of the management of above on the wider family.

Other than the obvious usual trepidation of moving to a care home, dont let the Meds issue be your main. I would say that is the most reliable aspect of a professional environment/care home. There are nurses on hand and it is a crucial part of their job.

Just start looking at some homes is my advice, as it will all become clearer.

All the best, I know how hard it is.

At the risk of stating the obvious, there are nurses on hand in a nursing home. There generally aren't in a residential home - which is cheaper, and most people with Parkinson's won't require actual nursing care. But care staff in all homes are trained to dispense meds, and for Parkinson's ones there should be a process to make sure they're not more than 20 minutes off the 'correct' time for each dose.

My Mum has live in care as she has Alzheimer's. It has worked very well and I would do it again if I could go back in time. They came through and agency but it has mostly been one lady with holiday cover. This is because Mum was mostly very settled, generally slept well at night and for periods in the day. I also visited which gave the carer restbite. The carer was really lovely thankfully.

However, with night restlessness and needing to move home, I wouldn't recommend it. It's also additional stress on you running the household and organising things.

Live in care is cheaper than the care homes I have looked at - for one carer at a time. BUT we obviously have to pay all utilities and food etc. Which probably makes them about the same cost.

Finally, care at the end of the line is probably far easier in a care home than a house.

I’m sorry but I do think your Mum needs to be assessed for Lewy Body Dementia (which is the type of dementia which many Parkinson’s sufferers get) if she hasn’t been already.
Because you mention variable confusion including sundowning (being confused & wakeful at night), & paranoia, which can be classic symptoms.
Personally I would opt for a care home - speak to the occupational therapy team at the hospital regarding which type of home would be the best fit.
I just know from caring for older patients, they can get so lonely living on their own which can make their mental health deteriorate fast.. care homes have plenty of other residents to chat to & activities to take part in, without needing to travel.

Mum has had home care and care home care. I would choose the care home every time as she is always busy and does not dwell on her illness as much. She now has dementia too. She likes chatting to the other people, they have entertainment from quizzes to musicians to church services. The staff are great and her medicine is always on time - as well as her food and drinks. She is 95% of the time happy there.

We had a live in carer for my mum at the cost of £1500/week. My mum did not particularly like the carer, and as well as managing the carer we still had all the hassles and costs associated with managing the house, the finances etc. A live in carer does not ease any of this. In some ways it felt like the worst of both worlds.

We're now looking for full time care for my dad and it feels like a complete no brainer to go for a care home. He'll benefit from lots more, varied company and it doesnt out work out that much difference in price.

If you can afford live in care, I think the choice between this and a care home depends to some extent on your mum’s personality (and how Parkinson’s affects this) - some people benefit from the socialising and activities in a care home, others are much happier in their own place. If you go for live in care, I’d advise doing it through a good agency who will sort holiday cover etc for you.

Live in care and care home costs can be about the same by the time you factor in the costs of running your flat / house and food.

I too would say live in care but as she would have to move anyway ....

Especially with confusion which I assume is expected to get worse, maybe a move sooner rather than later to care home? A care home would also mean you can be a daughter not a home administrator / PA.

If she doesn't claim attendance allowance get a claim in. It isn't much compared with care costs but every bit helps.

I wouldn’t source a new flat for it,
costs can be comparable and it can be a relatively short lived stage - as soon as she needs 2 to transfer and/or help overnight regularly then a care home is likely to he needed unless there are bottomless funds.

if she had the spare room I’d say to try it as long as it works, but since she doesn’t, it’s not really an option.

Live in care is often best if affordable, but having to move home to achieve it completely negates the positives, which is mainly around being in your own familiar environment.
If she is already confused, moving her to a new home will not help.
If she would be safe at night you could look at paying a carer to be there all day with her. You could combine this with a waking night carer initially( who only needs a comfortable chair not bedroom) Of you trialled this for a few weeks, you could see if she was settled at night and if she was you could lose the night care.
Her confusion may resolve quicker in home environment.
What does she want?

We had live in care for mum and dad, and it was a nightmare organising it and getting cover. We had two live in carers, but of course they need breaks and days off, and sometimes they leave. It was my parents’ wish to do it this way, but honestly it was hell.
a proper nursing home as opposed to care home will have nurse cover to make sure meds are administered.

You don't need a nurse to administer meds.

I was told that while a Steady can be used by one carer, some agencies or care homes have their own protocol of always using 2 carers for health and safety reasons. It has nothing to do with how mobile etc the resident might be.

Yes /This is a no-brainer!

We had live in carers for my mum with Parkinson’s. They were absolutely brilliant. Mum had a huge house and one of my brothers still at home. We found them through an ad for an agency in The Lady magazine and they were amazing, both ladies actually lived in Spain and they came to the uk for three weeks at a time. We lived close to Luton airport so it was a simple journey. They were with us to the end and between them and hospice at home care, I feel her end of life couldn’t have been better.

Care/nursing home and even more so because the current home is to small for a live in carer.

24 live in care will cost you at least as much as a good care home.