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    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

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Mum and Care Home - Should I take her out?

Discussion in 'I care for a person with dementia' started by susanandliam, Feb 19, 2016.

  1. susanandliam

    susanandliam Registered User

    Dec 10, 2012
    I'm not sure if I'm being unrealistic and I'm expecting too much?

    Mum has been in a care home for just over a fortnight. She told me she was lonely last night and wanted to leave.

    Mum can't really remember much at all but she seems more confused than ever lately. She does however look well, she eats well and the carers seem kind and caring. Mum does say that the carers are lovely.

    I know that she is safe, warm and well fed but it is her emotional needs that I am very concerned about.

    This did appear to be the nicest home out of the 7 I visited and the CQC rating was good.

    The problem is that most of the residents seem worse than Mum, quite a number are slumped in wheelchairs and there doesn't appear to be anyone that can communicate with her.

    The staff quite rightly have most of their time taken up with the residents who are more dependent and I'm not sure how much time/company my Mum is getting.

    There are up to 38 people and 7 carers in the morning and 5 in the afternoon, when I call in the evenings the carers are always rushing around and I have been told that they are working at full pace because of the complexity of the residents.

    The last few times I have gone up Mum is sitting in an armchair in front of a TV with all the other residents asleep and I don't feel she is at this stage.

    I contacted the manager about various points asking if they could test for a UTI as she seemed more confused than usual, asking if Mum had a key worker, the lack of a displayed activity sheet and this week although there is normally day care three times a week the organiser was off because its half term.

    They were asked to keep an eye on Mum when she was admitted as although she gets herself dressed she doesn't always change her underwear and on the third day I could see that Mum patently hadn't changed her underwear.

    When I went up there last night Mum wanted to go to the toilet but was distressed as both of the toilets were really dirty and I had to call someone to clean one before she could go.

    I have contacted the Office of Protection as I have L.P.A. to ask if I looked after Mum would it be in order to cover my salary from Mum's account. My salary would be less a month than the care home fees.

    I would have to fill in numerous forms and these would have to be considered by a judge as well as have to pay £300.00. There is also the matter of a backlog which means it would take approximately 4 months for the case to be heard!

    I would really appreciate it if you could let me know your thoughts on this and from anyone who has taken their parent out of a care home.

    Thank you.
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi S&L
    Let me start by saying that I don't know the answer to your question and it is an interesting one.
    You say you already have an LPA and as long as you could prove taking her from the home was a better option for the financial LPA (as it save her money) and a better option for the health LPA (as you would give her better care) then I can't see why not.
    That said the law is a fickle thing and I can't seem to find too much in the way of actual facts on this question.
    The only issue I could see is that someone could object to you being paid, so if some siblings (or indeed any beneficiaries of you mother's will) were to find out you been paid and object then you may have to prove that what you did was in her best interests in line with the POA.
    There is a thread on here about "never taking a parent into your own home" (I can't find it at the moment) where opinions about doing it are aired, you should read that because it's not all plain sailing, 24/7 is a big commitment for; you, your partner and any children (should there be any) it may be a lot harder on you and them than you might think, I've done it with my mum but for me it was a very positive thing, for others not so.
    One issue to consider is if you take a "salary" how you would handle this legally, would you; pay tax, get holiday pay, maternity leave, a workplace pension and all the rest?
    If eventually circumstances change and she needed to go back in care how would you explain the money you'd take to the LA if they asked?
    It's an interesting and complex question and as I said in the beginning "I don't know" what you're suggesting may be the "best thing" for her but whether it's allowed or not I really don't know, sorry I can't be more helpful.
  3. susanandliam

    susanandliam Registered User

    Dec 10, 2012
    Thanks for getting back to me anyway. I'm carefully looking into all options.

    I guess I was expecting the home to be better than it is and maybe my expectations are too high possibly unrealistic?

    It seems mad that I have to pay £300.00 for a judge to consider whether its a good idea but I can see why safeguards have to be in place. I imagine they would advise me as to how to deal with it legally nothing seems straight forward!!
  4. Bod

    Bod Registered User

    Aug 30, 2013
    All I can suggest is to look for another home.
    It sounds that your mother could handle the move, at present.
    Also Care Homes do have a certain turn-over of residents, so in a few weeks thing could be different.

  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    There are several things that come to mind here. Firstly, 2 weeks is nothing - she will not be settled yet. It takes several weeks (sometimes longer) for someone to settle and make friends.
    If you are visiting in the evening, you will probably be seeing the CH at its worst - half the residents will be wanting to go to bed and the other half will probably be sundowning! It is always the busiest time for the carers, so find out what its like the rest of the time. If you cant get there during the day ask about activities etc. Ask the carers what your mum does during the day - I am surprised that there isnt anyone to talk to. Mum is in a smaller CH that your mums and yes, there are people at all stages of dementia so some are indeed slumped in chairs, but there are several others who can still hold conversations and mum is with a little group of four people who are firm friends and always sit together. The carers should be able to identify people who your mum would get on with and suggest a chair next to them.
    One thing that concerns me is the state of the toilet. There should be no excuse for that, unless it was a one off and only just happened. Is the rest of the place clean? Does the place generally have a bathroomy smell? If this is regular then I would not find this acceptable.
    Beware deciding to look after her yourself to meet her emotional needs. As the disease progresses you will find yourself caught up more and more with meeting the practical side - especially when personal care is required - so you will find that you will have less and less time to meet her emotional needs. You will also find that she will rely on you entirely which is emotionally draining.
  6. MimoMilo

    MimoMilo Registered User

    Feb 6, 2016
    Hi, firstly sending hugs xx
    My mum has been in a ch for 6 weeks now. Settled really well ( was supposed to be respite but the doctor and SS have said she has no mental capacity, mum was wandering at night at home) I also feel mum is not at the stage some of the other residents are, she says some of them get on her nerves etc and she hadn't made any friends. Yesterday a lady gave mum a big hug and the nurses said they are best friends, thick as thieves! Made me really happy. Speak to the nurses, find out their views. I've realised mum lives in the moment now. Ask the staff how she is when she has no visitors. I presume if you have POA you have the right to decide what you feel is best for her.
    Wishing you well xx
  7. susanandliam

    susanandliam Registered User

    Dec 10, 2012
    Thank you for the hugs! It's nice to hear from someone who's in the same situation. Mum seemed happier today and we took her out to the garden centre but she has been very down. It's so very hard isn't it?

    I really worry about how she is during the day and as I work full time I can't get to see her during the day in the week.

    I am going to speak to Mum's keyworker on Tuesday evening to try and find out how Mum is generally.

    Thank you
  8. MimoMilo

    MimoMilo Registered User

    Feb 6, 2016
    I visit once a week. I will probably increase to twice. I look through the visitor book to see who else has visited ( also helps with conversation ) does your mum have any other visitors?
    I don't call though, that's when she says she wants to go home and I cannot handle that. I feel so guilty, but try to reason with myself that it's only going to progress and she is in the safest place x
    It is so hard. Talking helps x stay strong xx
  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    It took my mother a very long time to settle in. She packed up all her clothes every day for at least 6 weeks. Every night I would go in and unpack her. She was incredibly adept at finding bin liners and other bags to pack her clothes in.

    As others have said, it is still very early days for your mother. Also, and sometimes people don't realize this, you need to settle in to the thought of your mother being in care as much as your mother needs to settle in being in care. it can be a long process and is often accompanied by unnecessary and unrealistic guilt.

    Please kick that guilt monster off your shoulder. You have obviously done the very best you can and that is all you can expect from yourself.
  10. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Big hugs from me to. My mum has been in a care home since May. I think it is the most awful time of my life. However she is eating well and is safe. She had started wandering at nights outside when she was at home! Like you many of the residents are far worse than Mum and so although she loves the staff she moans about most of the residents so it's really hard. I visit 3 times a week and take her out or bring her to my house for the day or stay and have tea with her. I'm not working so I'm very lucky. I also have 2 sisters who visit for a couple of hours twice a week each so Mum does well. She still gets bored and takes to her bed if we don't go in! We also pay for an ex Carer to spend an hour with her each week.
    Is there someone you could get to visit her? Or pay an agency to visit?
    I guess I'm trying to say it is early days for you but it is the hardest thing to see a parent or partner go into a care home. Just go with your instinct but also know that it will usually get better to a degree.
    Not sure that helped but wanted to send a hug in any case xx
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It is important to remember your mother is the best she will ever be today and she has a progressive illness.

    My mother went into residential care at a much earlier stage in her dementia than my husband. This was because she lived alone and was at risk, whereas my husband lived with me so was not at risk.

    If you give up work and make yourself responsible for your mothers care, no one will be able to predict how the illness will progress and if the time comes when you are unable to manage her care unaided, what help you will be able to access.

    I had every intention of keeping my husband at home until the end. Sadly this was not possible.
  12. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi from me too S&L.
    I have a similar situation to yours. My Mum went into a care home nearly 9 weeks ago. IMHO she's at the "better" end of the dementia spectrum, compared to the other residents I saw. She tells me she's OK there and "not unhappy" and that she "could" stay there if she had to. But there is, as far as I can tell, little for her in the way of appropriate stimulation or opportunity for conversation.

    I don't live in the UK so have only been able to visit her there once. I call her about every other day, in the afternoon, and have started to make notes of her mood, what she says etc. Out of the last 11 calls, there were only 5 when she was what I would call "OK" when she first came on to the phone. The other times have ranged from being bored, to being sad, to being depressed, (she's always alone in her room, lying on the bed with these latter situations), to being in her bathroom, crying. By the end of our conversation she's always in much better spirits fortunately.

    Like your Mum, my own can't fault the care staff and I too found them to be lovely. It's just that the care isn't suitable for my Mum, in both her and my opinions. There is no other family or even friends who can visit her, so she's on her own, all day every day.

    So my plan too is to have Mum come live with me, and soon. I'm at the early stages of applying for Deputyship, having no LPAs, so have no idea yet how this is going to go! I've requested the "discharge procedure" from the LA twice now, but they haven't got back to me.

    Good luck with whatever you decide and if I myself can glean any info that may help you I'll share!
  13. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Please be careful when taking note of of what your mum says, Hillybilly. My mum will often tell me about things that happen in her CH that I know are not actually true - or only bare a passing resemblance to reality. What do the carers say about what she is like?
    If you are planning to look after her yourself make sure you know exactly what her difficulties are like. Does she sleep at night, or regularly wake and/or wander around? Are there issues with her washing/showering and changing her clothes? Does she have problems with continence? Does she get very confused in the evening? Your mum is unlikely to admit to any of these problems, but you need to go in with your eyes open.
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    If they are bored then boredom creates depression sometimes and anyway it isn't a pleasant experience. Some care homes have quite a lot of interaction with the community but most don't. You can ask the care home what they do in the community and If your parent goes to Church then find a church and a volunteer to accompany her - check it will be ok with the home manager.
    Some care homes encourage residents who want to and are able to go to a day centre or lunch club - you would have to pay extra I suspect.
    Ask them what they do and see if you can engage with the manager or even better with the activities coordinator to find activities that they would enjoy a few times a week. Sometimes when people are new they don't over encourage them to join in but if you can see if they can find her a 'buddy' or two it makes the world of difference. I saw a couple of ladies playing dominoes the other day and that is their regular afternoon activity together. Ask the activities coordinator/manager/care workers to activitely encourage them to participate.
    If they had any previous hobbies then see if you can find out if there is anything similar they could do.
    If they had friends out in the community can you get in touch and see if you can sort out some visits - sometimes people are afraid to visit without family being in touch.
    I realise these are all quite small things but they might help.
  15. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Susanandliam - if you do decide, as I have, that you want to take your Mum out of the CH, you may find it not to be as simple as one might think it would be! I've been requesting the "discharge procedure" for two weeks without success. Then, via a third party (my solicitor dealing with the Deputyship), I found out that an urgent DoLs for my mother had been put in place at the end of last week. Coincidence?! I think not. So now, apparently, I can't take my Mum out of the CH without jumping through lots of hoops, the size, height and location of which are a complete mystery!

    Unfortunately in my own Mum's case she has no friends/relatives out there anywhere who can visit. I'm trying to persuade one of my OH's relatives (who lives about 30 miles away) to visit Mum in the CH with his dog but he's a young lad with a young lad's social life to match and it's a bit of an imposition!
    Mum's most definitely not a churchgoer lol.

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