Care home for respite not working out

Discussion in 'I care for a person with dementia' started by Beachlover, Aug 23, 2018.

  1. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    My Mum was due to go into a care home for a week next month for my dad to have respite as she has had dementia since 1999. However her behaviour has deteriorated over the last few months (ever since the Dr. prescribed diazepam instead of lorazepam – I have told the Dementia unit this and they said they’d talk to the Dr).

    Mum has gone into a care home for a few nights this week (ironically the same one that she is booked to go into next month) for dad to have emergency respite but I called the home today and they said she is bad during the nights – not sleeping, going into other bedrooms etc, crying constantly for her mother (who died over 40 years ago) and that she needs more 121 care and that they wouldn’t be able to take her next month. They can’t understand how someone has so much energy despite the fact that she doesn’t sleep and the manager was astounded by the fact that she’d had dementia for 19 years. I’m at my wits end tbh. I took today off work to sort out my own things but have just been on the phone to the CP nurse/dementia unit. I think me and my dad are at the end of what we can cope with. We hoped she would have enjoyed the care home (as she likes going to day centres where she can have more activities). Does anyone know if 121 care is more expensive or what – I know nothing about all of this. If the care home can’t cope how is the family supposed to cope?
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,732
    Female
    London
    If the care home can't cope it's not the right care home. Everyone can say they take dementia patients when in reality they only want the well-behaved ones. Of course a medication review is important as well, but check out other homes in your area and ask them what behaviour they can cope with and how.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,720
    Female
    South coast
    My mum was up and wandering all through the night when she was in her care home and no-one seemed to mind.
    I would look around at other care homes and find out how they would deal with it.
     
  4. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    Thanks for this. The Dementia unit (who has the CP nurse) arranged this respite - as last weekend my father could no longer cope and asked for emergency respite. This particular care home is council run so they pay part and Dad pays part of it. Mum is due to come out tomorrow (just in time for the bank holiday weekend) and I'm dreading it. The trouble is that the Dementia unit (who are also in charge of Mum's medication) all the time need chivvying along.
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,732
    Female
    London
    That doesn't keep you from checking out care homes by yourself and then presenting your findings to them. If they need chivvying along, don't rely on them to be proactive!
     
  6. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    We don't rely on them to be proactive - in fact a more proactive family you couldn't wish to meet and we've paid through the nose for things in the past because we wanted them for mum rather than relying on people who should be providing stuff as apart of their job. That said - I'm trying to hold down a full time job on my own plus support my dad as well who is in his 80s. We're both physically, emotionally and mentally shattered after 19 years of Mum's dementia so telling me to be proactive sure doesn't help and has made me feel worse tbh but I'm sure you didn't intend to come across harshly.
     
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    There's a thread about the cost of one to one care below. It's expensive and quite often means either the home has to pay the staff to do extra shifts or use agency staff.
    K
    https://forum.alzheimers.org.uk/thr...one-at-terrific-cost-and-no-treatment.111152/
     
  8. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    Thanks Kevini. My mum isn't violent or anything - she wanders and is distressed a lot of the time (even at home) crying and asking to go home and see her mum. Diazepam only works to a certain extent and sometimes you just have to distract her. When i spoke to the care home manager earlier he said that they don't have enough staff to ensure she doesn't wander etc and due to cutbacks they can't get extra staff. He said she'd be better off in a home where they can provide more 121 care. They can't understand how someone in their late 80s can be so active - no sleep and can keep on going and going We don't understand it either tbh. In the past we've paid for stuff and basically done the work of the social workers and some other professionals but now in every way we've reached the end of the road.The Dementia unit should have all the details of all the care homes (private and council) in the local area (including what they provide, costs etc) - that is their bread and butter job but they don't.
     
  9. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,439
    Kent
    Dad survived on very little sleep was a night time wanderer and would go into other residents rooms and he wasn't the only one in his NH. Frankly I am surprised that the dementia care home manager is surprised by this.. it is a common theme with some residents. I am also surprised that presumably knowing this about your mum that the dementia unit didn't check before the placement that the care home could handle this. Staff ratios to monitor this behaviour is difficult even in the best of dementia care homes and I don't think any will provide 121 unless paid for seperately so an additional carer can be drafted in. I have no experience of a dementia unit and if they have a responsibility to give info on care homes but most relatives of self funders as dad was usually have to do the research and selecting a dementia care home themselves...I had to look at many before finding one that would take dad and his challenges...he was turned down by 2 after full day assessments. Can you firmly push the point to the dementia unit who arranged emergency respite that if this one isn't working you still need the respite now and they should arrange a transfer to one that will be able to handle your mum?
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,795
    Female
    I agree with love.dad.but...
    Your mother's behaviour doesn't sound that unusual for dementia, and as she has only been there a few days you would expect her to be very unsettled anyway. My mother spent the first few days at her care home not sleeping, very confused, pacing around. She continued the evening pacing for quite some time. There was no suggestion that the CH couldn't cope or that she needed 121, and she did settle down when she became familiar with the staff and her surroundings. Some CHs seem a lot better than others at dealing with this routine type of behaviour, you should be able to find one which suits your mother without 121.
     
  11. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    From the sound of it the unit your mum's in is something like the assessment unit my wife was in when she was sectioned which was an NHS/LA facility, most people in there were sectioned but some did come in for respite if they had challenging behaviour.
    When it was time to discharge the social worker did give us all a list of local homes but, self funding or LA funded the family have to find a suitable home. The social workers don't get involved, they're not allowed to recommend anywhere and one told me she'd only ever visited a couple of the homes as it's only when there is no family at all and social services are entirely responsible for a person that they become involved.
    If it is NHS/LA care she's in at present then her on going care will be in the private sector (except in the very few areas where the LA still owns and runs homes) and the NHS doesn't mix with the private sector.
    My wife and several others all left the unit at about the same time and all the families were running round looking at the same homes and essentially competing for the same places.
    Some of us got together and compared notes on the homes we'd visited which saved a lot off time as many of the homes wouldn't take anyone who'd been sectioned, others wouldn't take anyone with mobility issues or challenging behaviour so no point in even looking.
    It was OK for those of us who were younger and had cars but some of the older people who had health issues of their own were still expected to go out and look with no help from social services, they don't get involved.
    The list social services gave everyone included one home that had closed by the CQC and the building was up for sale and two more were in special measures, I found this out as I know how to find the CQC reports but some of the older none computer literate people had no idea that tis was the situation.
    Even as we speak (write) they'll be people running round looking for a care home on a bank holiday like this we often have people coming to look round the home, most I've seen was 4 families in 2 hours asking to be shown round.
    It's just one big merry go round all these people looking for care as there is no one central point of reference for care home placement.
    People come out of the care home in shock, they'd expected to visit a "care home" and then are confronted by an EMI nursing home for people with challenging behaviour but the sign outside says care home same as the sign on the residential home next door which is little more than a retirement home there's nothing to indicate what they actually specialise in.
    K
     
  12. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    Thanks for all your replies. When my Dad collected Mum from the care home on Friday she’d slept all the previous night - right through. Dad spoke to the carers and they said she was no real problem which is at odds with the manager when he phoned me on the Thursday to say she couldn’t stay there again. I agree that it’s to be expected that dementia patients wander but when Dad collected Mum – the other patients were just sleeping or reading a book. It looked more like an old people’s home rather than a care home so maybe the manager doesn’t want the hassle. Why social services placed her there knowing she has second stage dementia is baffling but I don’t have any confidence in them anyway (sadly). I know the dementia unit will try and get her into a home with more staff etc for the respite week next month – although I think my Dad may be getting to the point where Mum has to go in to a care home full time. We had to call a neighbour this afternoon who is an ex nurse to help with Mum. When she’s in one of her moods there’s nothing to stop her. She’s on 1.5mg of lorazepam a day (in divided doses).
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,720
    Female
    South coast
    Unfortunately a lot of care home say they accept (or even specialise) in dementia, but once they start to show typical dementia symptoms they get asked to leave. I suspect because that way they can get away with fewer, less well trained, staff! When you go and look at care homes, if all the residents seem to be at about the same stage, beware, because that usually indicates the stage at which your dad will be asked to leave. If they will be willing to look after him right up to the end you will see people at all stages of dementia
     
  14. Beachlover

    Beachlover Registered User

    Jun 27, 2017
    30
    Wales
    Thanks for the advice canary. Because this was emergency respite we didn't get the chance to visit beforehand and the home is about 40 minutes away so wasn't able to just nip there beforehand.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,720
    Female
    South coast
  16. vicx

    vicx Registered User

    Sep 11, 2017
    17
    Having worked in a care home, in which we had a unit for pwd. Yes there was always a shortage of staff, however it was down to the staff and their training. I worked nights, and if I had residents that wandered all night i would bring them into the tv area and I would try to draw their attention by either talking, singing, making something but doing something that could distract them. We were a short distance away from sleeping residents, and tried to avoid waking them. It is unacceptable to allow known offending wanderers to be allowed to go into others rooms, although not always able to stop, awareness is the key. It wasn't always well received by the day staff, as the wandering residents would be tired next day, but I'm all for a restful night for all residents. It's a shame i cannot bring my understanding of dementia to my own mother , I really struggle with her. I also worked on a hospital ward for 18 years and we always allowed wandering patients to sit with us, it kept them calm.
     

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