Live-in carers - how does it work?

[LifeOfBriony]

Hello, I’m a long-time lurker and occasional poster.

Mum has recently had a short emergency stay in hospital due to severe back pain resulting from osteoporosis. She was discharged and is staying at my brother’s house, which is not a long-term solution. Dad has dementia and is currently in respite care for two weeks with the option to extend, which is giving us some breathing space.

We are currently working to get a downstairs toilet installed at their house and a stairlift - this was planned before the recent emergency, and we were exploring respite care too. We are hoping work will start this week but still awaiting confirmation from the builder.

Mum has previously talked about live-in carers (originally for Dad but this May now be needed for Mum), but I’m really not sure what this would entail. Can anyone who has experience of this say how it works? What is the family expected to provide in terms of living space for a carer? Mum may need help with getting to bed and help during the night - would the carer need to watch her all night, or could they be in a different bedroom? What about daytimes, would they cook and do housework? Or are all these things possible?

I have a busy day ahead (I have to catch up with some work, as well as visit both Mum and Dad) but I will come back to the thread a little later. So stressful!

You have to have a spare bedroom. They have to have time off in the week. They typically will need two live in carers who alternate shifts but then you will need to think about holiday cover. A typical care agency can look into this for you. Decide on what care you want, maybe write a list of the tasks which you will want the carers to do each day and if there are pets or if the bathrooms/ corridors are small (so a larger person and your mum might struggle to be in at the same time for example). Id check the CQC website too, and ring up your LA for advice. Do they claim attendance allowance?

Honestly? Your dad has dementia and is settled in respite care. If you can I would leave him there - it’s better for dementia patients to move when they still have some sort of comprehension of what’s going on.

If your mum needs 24 hour a day care too I would be looking at nursing homes sooner rather than later - can you afford 24 hour care without selling the house?

It's quite expensive as you pay people's pay. Is is not a 24/7 service as nurses/carers need days off, breaks and sleep.
I did this as a young nurse. It was great fun.

You need a spare room. Look into an agency. They know all the details.
I would look int the care home option for both parents. They won't get better.

You need to think about their care needs individually, add it up and is it feasible for one person, who will need breaks and a good night's sleep to do it all.

So for mum - does she need the assistance of one or two people to move? If two, then it's not appropriate to expect one carer to do it. How much assistance does she need during the day? - Could it more realistically be provided by a visit in the morning and evening. Obviously if she wants 24 hour care and can pay for it that's fine but you haven't described someone who for example, needs someone at night.

Dad - given he is settled, would he be better staying where he is? It's likely mum would need a lot less care if she wasn't always fretting over him. What sort of care does he need? If he wanders about all night, that isn't fair on a live in carer who is supposed to be asleep.

First of all, your parents would need very deep pockets! If your DF has dementia and is already needing respite care then finding him a suitable permanent care home would likely be the best way forward for him.
With your DM, what needs to happen very much depends on how she recovers from her hospital stay. If you’re installing a downstairs bathroom, will it be suitably large enough for your DM plus carers to use it? Often 2 carers are needed to safely bathe someone with a physical disability. If it’s too small, it’s a waste of money. However, it its big enough, then why the stairlift? Just turn a downstairs room into a bedroom.
I would have expected your DM to have had a discharge needs assessment before leaving hospital, however you can contact social services and ask them for a needs assessment now.

Live-in can work really well if someone needs a lot of help. It can be cheaper than having someone just during the day. You get the continuity and flexibility of having someone around

The carers will help with any and all household tasks - everyday cleaning, laundry, shopping, errands, cooking. All the things your Mum would do but can’t. Ours never did gardening or maintenance/odd jobs so you may need to arrange separate help for that.

They need their own bedroom in the house. Ideally one which can fit a chair and a small TV too so everyone can have a break from each other

Typical working pattern might be two weeks on, two weeks off, with two careers alternating. You will need holiday cover too.

They will also need time off during the day. I think ours had 3-4 hours each day. So long as you don’t need someone in the house literally 24/7 - ie your Mum is OK on her own for a few hours, can get to the look by herself - that’s fine. If not you would need another carer to come and cover those hours

They aren’t expected to be awake at night. If you need someone to watch overnight you need to ask about “waking nights”. Again might mean an extra carer.

Ours were happy to cover occasional nights(eg if someone was ill) and breaks during the day. We paid them for the extra hours. It saved arranging separate carers

If any tasks need two carers to do safely - mainly applies if someone needs a hoist for moving - then again an extra carer needs to come in for that time.

I’d recommend starting with an agency who will take care of all the employment admin, finding people etc… Although long term employing directly will be cheaper. It’s similar cost to a care home, and if one carer can look after both of them in their own home, may be cheaper right now .

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If you end up with Dad staying in the care home, and your Mum just needs a bit of support rather than personal care, you into the Age UK scheme where you get a live in lodger who can do a few hours a day of things like light cleaning, errands and cooking. They don’t do care though - eg help with dressing, washing

Thank you all for your helpful replies. Lots to think about.

The downstairs toilet would just be a toilet and basin in under stairs cupboard -there’s no room for any more than that downstairs. Hence the stairlift.

We’ve just been told (Friday) that Dad is eligible for funded care, but we’re unsure whether the place where he is will be able to keep him longer term due to his medical needs. We’ll be following up all this tomorrow.

I doubt that Mum will be funded. Some savings (unsure exactly what) but these will run out once all this starts.

Hospital assessment was a joke. Options were: Care home, but they wouldn’t hold her in hospital while we, the family, organised it. Or back to her house, but she can’t do stairs atm and there’s building work happening next week. Or, my brother’s house - he has a downstairs toilet and basin, but the divider between his lounge and dining room (temporary bedroom) is glass doors, and a step between living areas and downstairs loo. So basically she has to leave hospital and becomes our problem.

Have to go out now to see both Mum and Dad, I will read all this again and reply later.

Only plus point is the home where Dad is now is lovely with very kind staff who stepped up to help us. Whatever happens, I will always be grateful for that (and so will my Mum).

Thank you all!

From what you have described, none of the options are suitable so she should not be discharged as it will be unsafe. Neither you or your brother are obliged to take her in and her home is currently unsuitable and unsafe. You need to push back and the discharge team need to look at more suitable options. They are the ones obliged to ensure her discharge is safe, not you (although morally you feel it is your responsibility).

We have used live-in carers for a relative with dementia, who has an annex attached to the house. They don't yet need that level of help that your mum does - the person is able bodied and can dress and don't need assistance at night - and it's already costing what a high-end demential home in the south east would cost, weekly. So unless you think she's going to get better or there is a lot of money available, I would think about all the options/

Thank you all again. Had a busy afternoon yesterday visiting and collecting stuff from their house for Mum and for my brother to take to Dad when he next visits.

Since December, Mum has asked for someone to stay at their house each night, to help her with Dad. We’ve covered this between the three of us with a paid carer also doing 2 or 3 nights. I expected that if my Dad went into respite care, Mum would want this to continue for her. She is afraid of falling and also anxious about being on her own. So if she goes back home after the building works, I think we will be back to that as a minimum.

Mum had wondered about having a live-in carer for Dad as his condition worsened. Mum has had a call with the GP who has indicated a recovery time for her of 6 weeks, which is better than we all thought (although it may only be a matter of time before it happens again). She might benefit from having someone overnight and to help her get ready for bed and get up, perhaps do an evening meal, but she may be ok during the day.

There is a spare bedroom which could accommodate a chair and TV, at a push. Thanks for clarifying that, @Daffidale .

I will follow up with Age UK to see if there is anything they can suggest. She has had a Physiotherapist visit who has provided a toilet frame, walking frame, and blocks to raise a chair have been ordered.

Poor Mum is a real organiser and independent in her ways, but she seems to have run out of steam. She’s talking about going somewhere for respite herself, to be “looked after”.

Live in carers are extremely expensive.
They are not a good long term idea in my opinion.
My grandmother got through 10s of thousands of pounds in less than a year. She has now had to sell her house and is in a care home. Where she should have been from the beginning.

Oh your poor Mum
Perhaps a short respite/discharge stay in a care home would be good for her too
Have you looked into options for them moving into the same nursing/care home?
It can be such a weight off compared to trying to manage a household
They might even be able to share a room if your Dad’s dementia allows.

Mum is thinking she’d like two weeks in respite care. She may be able to go to the place we first looked at for Dad (not where he is now). Tomorrow we’re meeting the builder and emptying the under stairs cupboard. Then we need to look for a place for her.

It might be that we look for some part-time carers once the toilet is in, to help her stay in her own home.

There are different types of care homes. Ideally we’d find somewhere for Dad where he could stay if/when his condition deteriorates.

my aunt had a live-in carer for a couple of years. the carer was appointed via an agency and lived in the house for about 6 weeks, then had a break and another carer came. she got 2 hours off per day + one full day per week, so aunt had to cope on her own for that much time.