Discussion in 'I care for a person with dementia' started by Patricia Alice, Jun 29, 2015.

  1. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    The last few days have been horrendous to say the least. I have been given 28 days notice to remove mom from the dementia "residential" care home as they say they can no longer meet her needs.

    The problem we have is that although mom has vascular dementia with sundowners, she is not always unruly. She can be obstinate but not aggressive. She can refuse medication saying they are poisoning her, but takes it eventually from family. She says she wants to go home because she is frightened and does not want us to leave her.

    We have begged them to keep her but they point blank say NO.

    I don't know where we go from here as it would seem that she is not residential dementia but neither is she EMI nursing as she can still wash, feed and dress herself; she can hold a conversation and loves singing and dancing.

    She appears to be somewhere in between both areas.

    Help please
  2. starryuk

    starryuk Registered User

    Nov 8, 2012
    My mum could be obstinate etc. She had vasD. It just depended who was asking her to take her meds or whatever. She succumbed like a lamb if the rather good looking male carer asked her to do anything. She liked him!

    It sounds as if the carers have not been able/tried to build a rapport with your mum. But perhaps another CH may be able to. Perhaps the staff there would be more compassionate. It doesn't sound as if your mum needs EMI nursing, just a more understanding CH.

    Refusing to take meds doesn't sound like a reason to chuck your mum out. Why are they saying this?
  3. jan.s

    jan.s Registered User

    Sep 20, 2011
    A few years ago, I was asked to find an alternative care home for Roger.

    I have to admit, although I was against it at the time, i knew that as soon as he'd moved it was the best things that happened. Where he had been very difficult, the staff in the new home knew how to talk to him and kept him calm (most of the time). He was no longer frightened and was contented and happy in his new home.

    The moral of the story is, that it was the best thing that happened under the circumstances. If the existing care home can't manage, or don't make that effort to manage your mum, there is no point in pretending that it will work. (I did)

    My advice is to bite the bullet and start looking for somewhere that will truly care for your mum. Such places do exist! Good luck :)
  4. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Thank you so much for replying.

    It's not just taking the meds, she was making the staff try her tea / cup of tea saying it was poisoned. She becomes agitated and cries uncontrollably but does not hit out (yet). There has been a lot of staff leave over the last few weeks (apparently due to management issues) and these staff were good with mom. The ones who are there are very nice but don't seem to be able to handle her outbursts.

    We were just told that they are unable to meet her needs now
  5. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Thank you JanS for replying

    I have tonight been looking on the internet at other homes, but they are either residential or EMI, which kind do we look at as she is in residential dementia now and they all say cater for dementia! In the case of the home she is in now they only want quiet people who cause no bother and sit doing nothing. There is a little staff interaction but not that much as they are too busy writing up the reports and I think the problem is that mom is bored. The dementia has robbed her of her confidence and is frightened of her own shadow.

    We have to find something now, I think it is just the unknown that frightens us, but we will start visiting places tomorrow.

    Thank you for listening
  6. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    South Wales
    In my part of the world we have dementia residential and dementia nursing - I chose a home for mum that did both - last year she was residential - she was mobile and able to feed herself and enjoyed all the activities available to her in the home and trips out with me - fast forward 6 months and she is now nursing dementia, not mobile or able to feed and trips out are a thing of the past - thankfully she has been able to remain in the same home but has moved care category - which has made a very stressful time much easier for me. Progression is inevitable and timescales/ speed are unknown - mum was bumped along the path by a dose of flu.
    I can see that mum is a little challenging - she doesn't cooperate with meds or eating and gets agitated with personal care - the staff seem to take it all in their stride and most know how to manage /coax her to maximise cooperation.
    If your care home can't cope now then perhaps getting your mum somewhere where they can cope is better in the long run
  7. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    I would have no hesitation in going for the emi nursing home. They employ nurses with a qualification in mental health, it is not just the physical nursing. It sounds as if your mum needs better care from more highly qualified people so go for it.
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    #8 Kevinl, Jun 29, 2015
    Last edited: Jun 30, 2015
    If for whatever reason the Care Home are giving you a "keep her but they point blank say NO." then my first port of call would be social services, they have a duty of care to her and may be able to suggest something.
    They may be able to negotiate with the care home (as they presumably do business with them) and at least do a managed move to a suitable home when one can be found rather than at the point of a gun. Social services if they place people in this home may have the clout to make them behave a bit more reasonably.
    Having thought this one through a bit more and please don't take this the wrong way, but could there have been an incident that the home don't want to "make a fuss" about that has made them respond this way. I don't want to be seen as blaming the victim but it may be that some aspect of her behaviour is not acceptable to them. My wife has in the past made some remarks regarding; race, colour, ethnic origin, size and simply calling someone fat or ugly. Usually she does it in private but sometimes not, while I'm there to correct her (or apologise) then fine, but when I'm not...
    You could see if there is an underlying issue with the home and her conduct but be prepared if it's not good, their staff have rights too and it may be they're not (in a kind way) telling you the whole story. Just a thought. K
  9. jan.s

    jan.s Registered User

    Sep 20, 2011
    I agree with sister Millicent, about the Emi nursing home. Roger went into the nursing unit and the mental health nurses understand how to treat these people.

    For example, mum refuses medication, with your permission they can give her meds covertly; Roger loved chocolate, so I supplied Ferrero Rocher, and they broke it open put the meds in the middle and popped it into his mouth - job done!

    Also, sad as it is, we know the condition isn't going to improve, and by placing her into another residential unit, you could be looking at another move in time to come.

    I spent a lot of time looking homes up, visiting, asking questions etc. even though you have been given 28 days, take your time to find the right place, after all, the existing care home can't just turn mum out and make her homeless.

    As Kevin suggests, get SS on board too, they may be able to give advice on a suitable place.
  10. canary

    canary Registered User

    Feb 25, 2014
    South coast
    In my part of the woods there are care homes that have 2 sections or "wings". One part is for people who are at an earlier stage of dementia and the other is an EMI locked unit for more advanced care. When someone gets to the stag of needing more care it is very easy to transfer from one wing to another. Would this perhaps be the answer?
  11. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    Please don't be panicked into a hasty decision - agree that a 'managed' move is the least she deserves and surely SS have a duty of care here. In my opinion, these care homes that just want the easy folk, and I have come across one or two also, will soon be out of customers!!
  12. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Thank you all for your replies

    Thank you to each and everyone of you that have read my post and replied with honesty.

    We are on a ticking clock, down to 21 days now. Today we found the perfect EMI home but sadly no beds at present but have put us down for one asap. The manager also contacted another home on our behalf and we have got to go tomorrow as there will be a bed next week.

    We mentioned this to the present home but she said she cannot withdraw the 28 day notice and we have to abide by this, unless she was given a 'section 2' in which case she would cancel the termination of contract.

    To say we are confused is an understatement.

    We have been advised to contact the CQC and complain.
  13. Anotherdamnlol

    Anotherdamnlol Registered User

    May 2, 2015
    My mum was also "evicted" from a care home, they wouldn't let her back after a stay in hospital and only gave me 24 hours notice. It was a Sunday when they told me and she was being discharged the next day from a private hospital so there was no option for staying on in the hospital. The consultant tried to reason with them, that my mum had actually improved, was now on the right meds etc but they would not budge. I had 6 hours to find a care home.

    I thought our world had fallen apart, but guess what? The next care home was so much better!

    Are you self-funding? If so, Social Services wont be interested.

    You will find the right care home for your mum, have faith. Good luck.
  14. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Thank you for your helpful reply. We have 21 days left so you must have been in a terrible state, because I know we are right now.

    No she had no home to sell so funded by local authority with top ups from my sister and I.

    One week on and still no social worker. We feel very let down at the lack of in-put and the clock is ticking.

    I am feeling a little more optimistic after reading the replies, that there is better out there that will be better for mum.

    Thank you once again.
  15. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    £400 a week third party top up! Disgusting

    Mom has been served notice at her care home she is in (residential dementia) and have been advised to look for EMI. We thought we had found the perfect place yesterday but today they dropped the bombshell £875 a week and she only gets £430 from her funding. How on earth can family who have mortgages and children find the other £445 a week!

    I feel sick and drained tonight.

    I just don't know what we are going to do.

    I will probably have to bring her home with me although I work and have no room, I would rather do that than put her somewhere miles away.
  16. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    If your mum is LA-funded they have to find a suitable home which meets all her needs without requiring a top-up. Speak to them and ask for the details of homes which accept LA funding. Put the ball in their court, which is where it should be.
  17. theunknown

    theunknown Registered User

    Apr 17, 2015
    I feel so much for you Patricia. My mum was moved from a Section 2 to a Section 3. This meant that I was never given the choice to have her at home with me. I was told by the hospital's social services department that my mum didn't need nursing care. However, the care home she's now in have placed her in their EMI unit, which is a secure unit. The home costs £900 pw, and £430 of that is paid by the LA. My husband and I pay the difference between the LA funding and the full cost of the care home.

    It infuriates me that social/mental health care is treated as a social 'problem'. We should not be separating the mind from the body, and vice versa. Mental health problems (including dementia) have an effect on the physical body. But dementia is treated as an 'old person's problem', not a health problem.
  18. jan.s

    jan.s Registered User

    Sep 20, 2011
    Surely if your mum was held under Section 3 she is entitled to Section 117 funding, which I believe should cover the whole of her costs. I may be wrong on that but it is certainly worth checking out. I am sure there are others on here with a greater knowledge of 117 than me.

    Also, as Pickles has said above, SS have a duty to find an appropriate care home for your mum within their budget.
  19. dottyd

    dottyd Registered User

    Jan 22, 2011
    I agree the unknown..this is not a social problem. It's an illness and as such people should be funded
  20. katek

    katek Registered User

    Jan 19, 2015
    #20 katek, Jul 15, 2015
    Last edited: Jul 15, 2015
    Like jan.s I cannot understand why your mother is not getting section 117 aftercare if she was on a section 3. The hospital social worker was wrong to tell you that she did not need nursing care, and this is borne out by the fact that her care home have put her in their secure EMI unit. Nursing care is not limited to nursing for physical ailments - it includes mental health nursing. My father, who is physically fine (apart from double incontinence) qualified for CHC because he scored Severe in both Cognition and Behaviour. He is now on section 3 as well, and is in an NHS dementia unit, funded, obviously, by the NHS. If and when he leaves, he will be entitled to section 117 aftercare despite the fact that he could actually self-fund - (he was previously self-funding in a dementia care home before being sectioned for his behaviour).

    However, aside from the ins and outs of section 117, has your mother been assessed for CHC? She might well qualify in the same two categories as my father, and therefore be entitled to NHS funding. Anyway, with her level of need, you should not be in a position of having to pay out two thousand a month towards her care - an amount which is more than some families bring home for themselves, let alone having as 'spare' to be able to subsidise a relative's healthcare.

    Patricia - you say you would not be able to afford a similar sum to make up the shortfall in a care home for your mother, and also that you would like to have her at home with you, even though it would be difficult with you working. I wonder if social services, who are prepared to pay up to a certain limit for a care home, would consider paying the same amount to fund day care for your mother while you work, so that she could live with you?

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