Live in care - any experience?

[glaurung]

Following a stroke FiL can no longer care for MiL who has dementia. They have always been adamant they want to stay at home as long as possible, so we are investigating live-in care for them.

Has anyone else had experience of this? What are the pitfalls (other than cost) and what things should we be looking for? If you know people who have tried this, how long did it work out for and would you do the same again?

[cindersinsuburbia]

An elderly friend of mine had live in carers and my friends relatives are live in carers

I believe the carers need there own room for a start. And they look after and do the daily needs of the client (including washing clothes and light cooking)

I think they need a certain amount of time off per day so you would need to cover that, by having another carer or doing it yourself, if they cannot be left alone
Also they have holidays in blocks, that would need to be covered

Beware of agenies as my friend had a different carer every 3 weeks and it stressed her out alot.

Would they need live in carers? would daily carers work?

[glaurung]

Thanks cinders, I'm fairly sure they would need a live-in carer cinders as MiL needs help at night sometimes. Their house is very suitable as it's a bungalow with some extra bedrooms upstairs, so space shouldn't be an issue. I know they will be happier in their own home, but not sure how long it is manageable for as their needs increase? How on earth does one go about finding a carer if not through an agency?

[noarguments]

We have been considering this for my parents, but circumstances have changed and I think it's a bit late for that. My father was v anxious about having strangers in the house, whether it would be someone they would get on with etc etc. We had approached a couple of agencies , at least then holidays would be covered. If you dont want an agency i wonder whether your doctors surgery can advise or make suggestions. We now have local carers coming in as needed as well as various nurses etc.

good luck!

[SucksToBeMe]

I have been a live in Carer and currently work in a care home. I am a huge fan of live in care. I am pretty sure it costs less in the long run. I think it's important to find a Carer you feel confident with and can trust.

[BoffinMum]

Agencies charge a fortune and the standard can be variable.

[Liveinthepresent]

Hi I have had 5 years experience of doing this for my DF. He sadly passed away at the end of last year but I have no doubt we extended his life and provided a better quality of life by going down this route. I am a big fan - and would say it is definitely worth serious consideration.
He had dementia as a result of a stroke and by the end had quite challenging needs.
I am at work now and on phone so will post more later.
It does have challenges and pitfalls but so does residential care.

[glaurung]

I've been out all day with my FiL at the hospital, so thanks for all your comments, especially Liveinthepresent, as I was beginning to think that it wasn't a workable plan as MiL is quite unsettled by all the upheaval and has regressed. I'd be very glad of any specifics anyone would like to share - eg agencies to avoid (PM if need be). Currently SS have placed a full time carer for a fortnight as emergency cover, but she is struggling as MiL keeps waking at night so no-one is getting enough sleep. I hope she will settle down, it's a very horrid illness, she keeps thinking I'm her mum at the moment . We have a case conference on Monday, but I'd like to have an idea of what might be realistic by then.

[Liveinthepresent]

glaurung I really feel for you it's a horrible time for a family - you sound like a lovely DiL.
It is hard to know where to start so do feel free to PM if you have specific questions.
I can only comment of course based on my own experience - here's a few thoughts for you -
Little support from NHS / social services for live in care
This makes decision making challenging as we were under similar time pressure to you
We had to do all our homework and be quite assertive about our plans

Probably one of the biggest things to consider is the degree of family support - if you have a number of people close by who are prepared to be hands on and involved day to day then this makes things much more realistic.

Was useful looking round some of the nursing home environments so we could see how the alternative would be.

Our start point was that we knew DF dementia regressed badly away from home so we felt we had to try to keep him there if possible.

We employed carers direct for a while then went through an agency - both had their merits but the agency was easier to manage long term as we didn't have to deal with providing cover for absence etc.
We met some amazing carers who really went out of their way to do their best for him. ( we did have some challenges too but these were pretty rare!)

Not an easy route but very rewarding as the care feels much more tailored than you can get in care homes.

Hope this is useful - happy to answer any questions.

[glaurung]

Thank you for that Liveinthepresent, lots to think about. I have PMd you.

[sadaboutmum]

I placed an advert in The Lady online (which as far as I can recall is either free or very cheap) I had quite a good response and interviewed a few people over the phone and then a couple of people in person. I felt more comfortable employing directly than using an agency, although you do then have to deal with being an employer. I used a payroll agency to deal with the tax and NI issues - they were called PAYE For Nannies but deal with care workers too, and charged me about £120 a year to doing all my payroll docs and dealing with HMRC. Eventually my Mum deteriorated such that she needed two people to look after and move her, etc, and she became completely incontinent which made looking after her at home quite difficult. But employing a carer ourselves meant that for the year that she remained at home we had continuity of care and also got to know the person caring for her. Our carer lived in 5 days per week and had 2 days per week off. I covered the 2 days off myself, with some help from local agency carers who came in to wash and dress in the mornings. Please feel free to PM me if you would like more detail - but the basic message is that there are lots of good people out there looking for care work and sometimes they would prefer to work directly for someone than go through an agency. Good luck.

[glaurung]

Thanks for sharing that sadaboutmum, the Lady sounds useful. To update, SS decided at the case conference to put 2 carers in place doing 12 hour shifts starting tomorrow to see how that works. At the moment they are still assessing her needs and playing with her meds, but it does seem that unless she settles more that one live-in carer probably won't be able to cope. The good news is they seem to recognise keeping her at home is the preferred option and haven't yet made any suggestion that she moves to a care home. I guess we need to wait to see what her needs are before we can proceed.

[Liveinthepresent]

Hi glaurung saw your update - that sounds brilliant that at least you have full support that her care is best provided at home.
We had to battle to stick with one carer - but to be honest that was our own financial pressure as much as anything we couldn't have funded 2.
She may well in time be much more settled at night and that will make things easier for you all.