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Care home vs 24-hour live-in care at home?

Discussion in 'Middle - later stages of dementia' started by snowdrops, Feb 1, 2015.

  1. snowdrops

    snowdrops Registered User

    Jan 18, 2015
    2
    I am new to this forum, so I hope I’m posting this in the right place! I’ve been reading the threads to do with care home decisions, but wanted to know if anyone had any experience of, or advice on 24-hour care at home as an alternative.

    We’re in a situation whereby Mum (87) has been in the local care home since October, which was only intended to be a couple of weeks or so while Dad was there for respite following a hospital stay for Parkinsons-related problems. Sadly Dad passed away in November, and we were worried about Mum being alone at home (old farm cottage, fairly remote), more because of her physical problems (osteo-arthritis) and being at risk of falling than her dementia at the time, so we felt it was the safest place for her. We chose the home because they’d both visited it before, Dad was there, it was local (which meant friends and family could easily visit), and it was intended to be temporary.

    However, bereavement has accelerated Mum’s dementia. She’s grieving for Dad and for her home, and is increasingly anxious, distressed and muddled about everything and is very unhappy there. They lived a fairly solitary life on the farm, without hobbies or social life (apart from church), and the “activities” at the home do not interest her. Her eyesight and hearing are poor, which makes any social activity even harder. The only thing that keeps her going is being able (with help) to have a walk outside every day. Most of the staff are well-intentioned, but do not appear to be tuned into her dementia in terms of taking the time to talk to her gently and explain what is going on. For much of the day she feels she is just waiting in for staff who have said they will come back “in a minute” but then don’t. She has various physical issues, including medications (which she can no longer manage herself), that need attending to several times a day, so that together with her confusion and unsteadiness on her legs (particularly at night) means that our choices are really only a care home or 24-hour live-in care back at home. I live 3 hours away; my brother is local and manages to rearrange his work to take her to her (many) medical appointments, but cannot care for her.

    Mum’s anxiousness and frustration manifests itself in total negativity about everyone and everything. Communicating with her is very stressful and exhausting, and we’re not wholly convinced that even the most patient single carer would be able to cope with looking after her at home. However, it would give her the 1 to 1 attention that she needs (a constant complaint at the moment is that nobody understand or listens to her, or has time for her), and it would mean she was in her own home again. We feel we should perhaps give it a go for her sake. The risk of course is that she channels all her negativity against any live-in carer and will hate them and hate them being there in her home; also that the dementia will accelerate to the point where we may have to move her again anyway. Has anyone tried out live-in care for someone with dementia?
     
  2. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Welcome to TP snowdrops.

    I'm afraid I have little knowledge and no experience of 24-hour live-in care but I understand and appreciate your reasons for wanting to investigate it. One thing that does strike me is that it would surely involve more than one person as the care worker could not be 'on-duty' 24/7.

    Have you tried explaining your thoughts about her current situation with the staff? It may be that letting them know that you feel she might respond better if treated differently would be a positive move.

    I hope you will soon get responses from people with more experience of 24-hour care.
     
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,495
    Female
    England
    Hello and welcome to TP from ME too.

    As Stanleypj says you would need more than one carer per 24 hours and of course there would be holidays to cover and possibly lots of on going paper work to keep up with depending on how the care was being paid for.

    Again agreeing with Stanleypj sitting down with the Manager and discussing your concerns might be the first thing to do.

    I have never tried live in care and know of no one who has so of no help to you. Hopefully someone will be along who has and can give you some advice.
     
  4. VickyG

    VickyG Registered User

    Feb 6, 2013
    327
    Birmingham
    Hello Snowdrops and welcome from me also,

    To answer your question, both have positives and negatives.
    If your Mum is in a care home, then there's always someone around at some point, a constant stream of visitors, district nurses, GP's, staff and of course, other residents, so if at some point there was to be a problem, it would get noticed. Also, there's the interaction bit, there's usually some form of activity and chit chat going on. And, as the person advances in Dementia / health, no risk of having to be moved again.
    If Mum was to go home, yes, there would be a person there 24/7, and sometimes you can also get up to 4 calls a day from a carer that can call in to assist the 24/7 carer if needed ( with turning and re-positioning if bed bound or not mobilising, and also with bathing / washing and incontinence aid changing ) It's nice to think the person would be better off in their own home, but sadly, it's not always the case and there has to be a lot of trust in the company / carer that is caring for your Mum. Then, there's the social interaction bit, would your Mum get enough stimulation ? Some people do fare better with 1-1 care, while other's need a bit more company and different stimuli.

    It's a lot to think about, but don't rush, try and find out as much as you can, and sure you'll make the right decision.
    Take care,
    Vicky
     
  5. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,403
    Kent
    Having looked after dad for 8 mths in his home 24/7 after mum died suddenly with his dementia declining, we couldn't leave him he would have wandered and not looked after himself, I tried 2 different live in care agencies. The second carer was shocking, exploded in temper at me over cooking a hot meal, it made us realise how vulnerable dad was 1-1 in his own home. Maybe we were unlucky I am sure there are lovely live in carers out there but we didn't find one, the main problem was that although the agencies all say their carers are dementia trained and experienced, sadly for us it was clear they did not have even a basic understanding of how to treat a dementia client and they wanted dad to fit into their way of doing things rather than the other way round. We very reluctantly conceded that dad had reached the stage where he needed expertise around him all the time and he has now been in a care home for 6 months. I think maybe live in care works well to support a non dementia partner or spouse in looking after a dementia person. If you try it, I wish you good luck and hope it works, we desperately wanted it to but looking back maybe keeping him in his house wasn't in his best interests, he and mum were also solitary only needed themselves for company but now in the home I think it has been good that people are always around.
     
  6. la1983ura

    la1983ura Registered User

    Jan 31, 2015
    2
    #6 la1983ura, Feb 1, 2015
    Last edited by a moderator: Feb 1, 2015
    Hi i currently
    Work for a care company and we do , 24 hour care i currently do nights with someone in there own home , its worth calling for some advice but it can be worth it. And you need someone who understands dementia .
    Good luck


    Sent from my iPhone using Talking Point
     
  7. Navara

    Navara Registered User

    Nov 30, 2012
    181
    Having used a private care agency on a sessional basis when my mother first started having problems, I would imagine 24/7 care in the home would be fearfully expensive - nice if you do have the money though.
     
  8. jax2015

    jax2015 Registered User

    Feb 8, 2015
    5
    same boat

    hi my mom as been in her new care home now for five weeks,she seems settled at times angry and frustrated at others,we also feel as you do and we took mom back to my house for the day and she was more at ease,the problem is we would need adaptions for her as my toilet is upstairs,and as she don't sleep she needs some one with her 24/7. we feel the care are doing no more for mom than we could,when we leave her she cry's and says i am on my own now till you come back as the staff have little time for the residents.
    we have been told a specialist carer would be £700+ a week.
    as my mom is not bed bound so we do not need medical care.
    we can get state pension and pension credit and attendance allowance paid to mom.
    a care allowance paid for the carer if the carer is looking after the sick person 35 hours a week and earning less than 100 pound a week.hope this helps.
     
  9. Navara

    Navara Registered User

    Nov 30, 2012
    181
    Personally I wouldn't do it. You are only seeing things as they are now. Sadly they will only get more complex with time and its a fact that in the end stage a lot of dementia patients do become bedbound when the part of the brain that controls standing and mobility ceases to function. Are you going to be able to deal with all that? You are likely to face the need for an ever increasing amount of aids and adaptations in your home.

    When I mentioned it would be nice to do if you had the money, I was thinking about someone who has a LOT of money and a large property - the size that they could set aside separate living space to create a bedroom/bathroom specifically for the use of their relative. My mother had an electric bath chair and a frame around the toilet which raised the seat - all well and good or her but a pain in the proverbial when on the odd occasion my brother stayed with her!
     
  10. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,403
    Kent
    The two agencies I used each required their carer to have 2 hours free time a day which I covered ... Dad was not agreeable to day care of any sort....plus his days/nights had flipped so he was up a lot of the night...a 24/7 carer with the two agencies we used were clear that if the carer was disturbed more than twice by dad..not even him needing help just making noises that woke the carer...we would eventually have had to pay for an additional night carer so the 24/7 carer could get 8 hours rest. I understand this to a point but it sort of defeats the object of 24/7 complete care. Costs were £750 for 5 day week..we covered weekends. Adding night cover would have doubled it. Live in care can work but whilst thinking the opposite before we started can be surprisingly restrictive and rigid but we were unlucky with the calibre of dementia carers.
     
  11. snowdrops

    snowdrops Registered User

    Jan 18, 2015
    2
    Admiral Nurses

    Thank you to everybody who so kindly gave some advice about whether to still consider getting Mum home with live-in care. All good food for thought. Whilst we haven't decided 100% (or at least still don't feel able to admit that we have), our current thinking is that as Mum probably won't go home. This is partly because she's now getting up several times a night, so would need a night-duty carer too if at home - and things will probably get gradually worse.
    Two things I thought worth posting here:
    1. Several people have pointed out that it's important to also look after ourselves (a bit like the safety advice on an aeroplane - put your own oxygen mask on before helping others); the care home may not be a perfect solution, but Mum is safe, warm and eats well, and we are trying to do the best for her. Live-in care for someone like Mum could be incredibly difficult for us to manage.
    2. I discovered the existence of Admiral Nurses; a bit like Macmillan nurses, only for dementia sufferers. They're a sort of helpline, part of dementiauk.org, and can be contacted by email or by phone. (This site won't let me include the email address, but a clue is to put dementia@ in front of the web address!) I sent them an email and a dementia nurse called me back to discuss Mum, and was incredibly switched on about all her issues, and very helpful and understanding. I would advise anyone who's in a quandry about what to do, or in need of professional support to get in touch with them.
    Thanks again for everyone's thoughts and comments.
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Thanks snowdrops. Admiral nurses are often mentioned on TP but it does absolutely no harm to mention them often. They do a great job.

    The reason you can't post a link is that you are a new member and you have to post 10 (I think) times before you can put up links. This is necessary to avoid spamming.

    For people who might come across the thread, here's the link to Admiral Nurses.
     
  13. Margaret79

    Margaret79 Registered User

    a th

    Hi Snowdrops and welcome to TP.

    Just a thought that came to me whilst reading your posts - would it help to get a befriender or even a paid carer to spend some time with your Mum, taking her out for a walk or whatever but some quality time where the carer isn't under pressure to look after anyone else.

    Keep posting!
     
  14. Margaret79

    Margaret79 Registered User

    Hi Snowdrops and welcome to TP.

    Just a thought that came to me whilst reading your posts - would it help to get a befriender or even a paid carer to spend some time with your Mum, taking her out for a walk or whatever but some quality time where the carer isn't under pressure to look after anyone else.

    Keep posting!
     
  15. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    #15 nitram, Mar 30, 2015
    Last edited: Mar 30, 2015
    Deleted by nitram
    Posted in error.
     

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