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Can anyone give me advice about live-in care?

Discussion in 'I care for a person with dementia' started by CyclingFan, Aug 31, 2015.

  1. CyclingFan

    CyclingFan Registered User

    Mar 26, 2015
    1
    Hi everyone, this is my first post so here goes! My Dad has dementia, which has been getting worse recently. My Mum is coping with him with the assistance of carers who visit every day but she is finding it a struggle, and has some health issues herself. (Both are in their eighties). I live some distance away and work full time so can't be there as often as I want to. I'd like to find out about live-in care options as we think this might be a possible answer. Can anyone give me some advice about this? (Mum and Dad are self-funding by the way). Many thanks for any help.
     
  2. father ted

    father ted Registered User

    Aug 16, 2010
    683
    London
    My aunt had a live in carer for the last year of her life as she was a widow with no children, I lived over 100 miles away. At first she found it very hard having someone in her private space and railed agains't it for a long time, kept saying she wanted the carer out of her house. However there was no other option as she refused to go into a home and I could not take her as I already had my Mum with AD with me.
    The carer was very good indeed and everyone I know that has had a live in carer has had a good experience. The carers seem to be of a higher calibre and more respectful I expect because they are under your roof. If your parents are self funding then it would be quite straightforward- good luck
     
  3. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    I'll be in a similar position soon I expect.

    Where do you suggest one would start to look for a live-in carer?
    What happens with regard to trial periods, contracts, notice periods etc.?
    What's the scale of charges for this sort of care?
     
  4. Bod

    Bod Registered User

    Aug 30, 2013
    1,111
    Remember that any live-in carer, will need time off, usually, couple of hours during day, and most of the night (for uninterrupted sleep).
    Would your sufferer be safe to be left alone, for these periods?
    Care homes, have staff on duty 24/7 so nobody is left to their own devices for long.
    Cost wise, it's much the same, live-in or care home.

    But bear in mind, there will come a time when live-in care will not be enough.
    It might be better to bite the bullet now, and allow them time to settle, whilst they can.

    Bod
     
  5. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    Probably be best to look at employment agencies that specialise in care/nursing staff. Best to find an agency that deals with introduction/placement only. Not one that is involved week to week, month to month. The right agency will be able to advice you on suitable salary and what staff expect as residential. If the care is shared with your mother then the issue of breaks/time off should not be an issue. You or your mother will become the Employer so you will need to factor in tax and national insurance maybe even pension contributions. One thing for sure, residential care can be very expensive.
     
  6. Clueless2

    Clueless2 Registered User

    May 14, 2015
    34
    When I looked for live in carers (dad was terminally ill cancer, mum then moderate vascular dementia) it was continuity of carers that was most important. My parents needed a carer experienced in both dementia and palliative care.

    I began my search late one Saturday pm. It was interesting to see how the different companies responded to an out of hours enquiry, as a possible indicator of the response that I might have had in any future emergency. One company, whilst unable to provide live in carers themselves, were a mine of information and gave me the name of a company that they had worked with in the past, The Good Care Group.

    I had quotes from two companies in the end, both £1000+ per week (Home Counties) but offering very different services. We went with the "same two carers alternating every two weeks" as opposed to "a carer from a pool of five, alternating weekly".

    Having over the last nine months discussed it with the live in carers, the problems of "get out of my house" and resentment seem more of a problem where it is the female resident suffering from dementia. Certainly for my mum, who had not worked once she married, her home and it's efficient running were entirely her domain, having live in care was very problematic. In fact we always refered to the carer as a "nurse" and told mum that she was there to look after dad, otherwise he would have to stay in hospital.

    Despite mums best endeavours TGCG were with her for 9 months. All of the carers during that time were knowledgeable, caring, thoughtful and hugely supportive to us the family. Two are still in touch by text and email with me. The company itself were fantastic; they sent their dementia specialist to assess mum when we had concerns about her behaviour, and I could and did call them at any time, knowing that they would respond. The live in carer practically supported mums recent move into the care home; preparing her clothes, visiting it with me and mum in the preamble, and afterwards when mum was a resident. The live in carer was able to help me with the endless form filling about what mum was like, triggers, positive effect phrases, subjects to avoid, etc.

    At the time live in care was exactly what my parents needed, now with my father having passed away and mums dementia more advanced, she is without doubt better suited to being in the care home.

    Cost wise the live in was a little more expensive, and provision of daily two hourly breaks also needs to be factored in.

    Good luck with your search.
     
  7. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Thank you

    Thank you to everyone who has posted on this thread. It answers many of my previous questions (Care home or home care?) and is helping me to think through the issues. I would really love to hear about more experiences readers have had in considering home care, particularly where 2 people are involved.

    This forum is a Godsend. Thank you all so much.
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    I was sitting on a plane on the way back from Spain earlier this year and got into conversation with the lady next to me as I noticed she was reading a text book about dementia.

    Turns out she and her husband are ex-pats living in Spain, but several times a year, she travels back to the UK to work for a few weeks as a live in carer. She was a nurse.

    She works for an agency (pm me if you'd like the name). Please note, I'm not recommending it other than to say that if this lady is representative of their staff, I would probably have been happy to entrust my parent to her. She had no reason to set out to impress me...but she did.

    I think is a great way to support a couple. However, I would be much more cautious if someone has sole charge of a client with dementia in their own house. You really have no idea what is going on behind closed doors when everybody else has gone home.
     
  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    Don't want to be discouraging, since I think live in care for a couple could work very well, but do please check any references very carefully. I have posted on here before about someone who employed a live in carer for her father with dementia, with devastating results . The person who told me admitted that she had not been careful enough with references, and had glossed over a very 'non committal' one from a previous family which in hindsight should have been a red light.
    On the face of it, the carer had seemed admirable for the purpose, but had evidently been intent from the start on taking complete control, turning him against his own family, and ultimately getting her hands on his substantial assets. In all of which she succeeded. And there was no redress within the law.
     
  10. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    55
    Since someone mentioned them....

    Just FYI we had a dreadful time with the 'Good Care Group' don't want to slag them off in public, but just to be aware to trust your instincts and hopefully you will have better luck than us! ;)

    I suppose the fairest summary is that mum-in-law was really too challenging for them and they wouldn't admit it.

    But quite apart from the practical side of things, I was shocked that only about one third of the fee went to the employee, who was effectively being paid for ten hours a day but expected to be available 24/7. It does make me wonder whether employing someone directly would be worth exploring, although of course that raises a whole other set of issues.
     
  11. Shivs

    Shivs Registered User

    Sep 1, 2015
    1
    My mum has dementia

    I was wondering if anyone could give me some advice, my mum has dementia and my dad is very ill, they live in Wiltshire with my brother and his wife and although she is fantastic with them and loves them as her own, I feel it is not her duty to look after them she works full time and my brother works from home most of the time, I was working in London had a good job but the travelling backwards and forwards was killing me, I have resigned from my job and decided to move to Wiltshire and sell my flat my priority is to take care of mum and dad more and thinking of becoming a full time carer, can any one advice if this is a good idea, what would I be entitled to etc ?
     
  12. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    189
    North Hampshire
    Perhaps start this on a new post ?

    Shivs, welcome to TP. I think it might be best if you start this off on a new & separate post ?

    rgds, Elizabeth
     
  13. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    189
    North Hampshire
    24 hour live in care

    CyclingFan, Sinkhole, Dmac

    We have had live-in carers for Mum (with Alzheimer's) & Dad (very frail, possible VD) since February this year and it is working out very well.

    There was initial resistance (mostly from Mum) so we introduced it as 5 days to help Dad recover from an infection and just kept extending it.... that was back in February... The continuity of 1 person over several different carers appearing 3 times a day has made a big difference to Mum & Dad.

    So far we've only had 2 carers and both have been absolutely wonderful. Their contract says 9 hour days with 2 hours off per day (which they are happy to fit in around other family visits/paid sitters). If they need to get up in the night, they do. Not quite sure how the company works this out, but when we've voiced our concerns, the carers has repeatedly told us that they are more than happy with the set up. My sister and I have a lot of daily contact with the carer(S) & Mum & Dad, via visits, 'phone, WhatsApp & Viber (!). From what the carers tells us, this is a little unusual - but very welcome.

    Whenever there is a change in carer (even if they have been before) there is a 24 hour handover. The agency sent us CV's before they started and we were able to specify what was most important to us.

    In our case our top 3 priorities were: Dementia experience; Very clear English (Dad is very deaf) and Friendly, chatty and happy disposition. The agency office staff and the carers Manager(s) have all been very helpful too.

    Cost wise (for 2), it's considerably cheaper than the upmarket care home that we tried back in October 2014 for 2 weeks respite (which Mum & Dad didn't like, but couldn't explain why). Currently paying £924 per week.

    So from our point of view, we have nothing but praise for Live-in Caring...

    Happy to pm you a link to their web site.

    I hope this helps. Elizabeth.
     
  14. doodle1

    doodle1 Registered User

    May 11, 2012
    240
    I have had live in care for my parents for almost 2 years now. Mum has Alzheimer's and has been through some very tricky times incl violence towards my father and my father has vascular dementia with very severe coronary disease. I am on my third agency but do not panic. My first agency I found through the Lady and were good but could not cope with mum, the second ,one of the biggest nationwide ,had good people but due to the time situation ,around Xmas , could not offer longer than two weeks at a time so I swapped to the third agency whom I have been with for 15 months.
    The cost is more or less the same for all - for a couple such as mum and dad it's £600 to the carer per week and £140 to the agency. They need two hours off a day. I started out not needing relief care for that time but when I arrived at the house to hear mum banging her zimmer on the floor to try and throw it at dad to hit him we needed extra help.relief care for us does extra inter action with mum to go the live in carer more of a break.if your parents are relatively safe alone then start without relief.
    If you go through an agency then they will find a replacement if it doesn't work out but you do have to be tough and say this is not working.
    I am happy to chat to anyone who Wants to pm me
    Ps I should say that my mums motto has always been ' why be difficult when with a tiny effort you can be truly impossible!' And the carers have got on with her !!!!
     
  15. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,353
    Kent
    Dad has been in a nursing home for 14 mths now after Mum died suddenly and we looked after him in his own home for 10 mths, I tried two live in care agencies before having to accept a care home was in his best interests as he was too vulnerable. We didn't have much luck I'm afraid. Live in care should work and I am sure there are some wonderful carers out there but the second one we had was shocking, little understanding of dementia or my dad's stage even though she and the agency said she was experienced. She ended up shouting at me when I asked what Dad had for dinner . everything was provided by me, Dad incapable of asking for anything so totally reliant on a good carer - she provided him with a sandwich as cooked dinner! I personally felt after my experience that live in care is very hit and miss and probably only works well enough if the carer is in addition to a spouse living with a dementia sufferer. Dad is a night time walker so we would have had to have 2 carers for night time which would have made it more than his very expensive now nursing home plus doing the 2 hours carer cover each day was draining for me and sort of defeated the object. Sadly we felt we couldn't trust 1-1 care for dad in his own home after my shocking experience, the agency were slow to acknowledge the carer had been unprofessional and wasn't suited to live in care, thank goodness she exploded in temper when I was there, I had a gut feeling about her which didn't abate over the 5 days before her meltdown and although leaving Dad after each visit in the nursing home is terrible and I feel guilty each time, I know he is safe looked after and there are others around him looking out for him. I didn't have an easy feeling leaving him in the sole care of one person, you just don't know what goes on and Dad couldn;t verbalise if anything was wrong. I hope you have success and wish you well in your quest.
     
  16. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    If we do go down the live-in care route, my intention is to have 2 or 3 remote cameras installed in the house covering the kitchen, living room and entrance hall (nothing too invasive, just enough to keep an eye on things).

    I already have one keeping an eye on the front door. It records internally and can be viewed remotely. Has been very useful for peace of mind and keeping cold callers away.

    Any comments and anyone here already doing that in a situation with live in carers?
     

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