1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    I am so upset but I dont know if my feelings are justified. Any input would be gratefully received! Mum went into respite in January into a shared room, ended up staying there and ever since I have been trying to get her own room. Her room mate sadly just passed away and my mum was upset. Even though she doesnt have a memory she still has feelings. The home has been totally resistant to giving her her own room saying that it would confuse her too much. Another lady also passed away last week and another lady was taken into hospital after a collapse. When I ask about a single room they say she is in and out of her room so much especially in the afternoons that it would totally confuse her. I understand this and said I would go and spend more time with her to get her settled. Still no joy. I asked my sister to go today and speak with the manager as I am always asking. She has been told they are moving another lady into my mum's room for end of life care. I am so appalled. One of our reasons for wanting mum to have her own room is that we have absolutely no privacy for any visits and are constantly interrupted by other residents butting in to our conversations and one especially refers to my mum as my son. My sister says it doesnt matter as the other lady will just be in bed all the time. I said that it will not be very nice for my mum and rules out any privacy or entering into the room if the lady is in bed all the time, especially if she has visitors. Also my mum will be subject to end of life care in her room and another room mate dying. I am so angry and upset that everyone else seems to think this is ok. I feel like going in and bringing her home with me although I know I wouldnt be able to cope. I would consider moving her into another home but she is very settled there. Mum is partyly LA funded and I truly believe this is a finance issue although at the best interest meeting a single room was always on the cards and budgeted for. I just dont know what to do. Maybe I am overreacting but I am truly truly sad. My mum deserves better!
     
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    How awful for you to have to put up with this. There must be a way of getting your mum a room of her wown. I am sure others will be along with suggestions on how to help soon.
     
  3. Slugsta

    Slugsta Registered User

    (((Daisy))) no, I don't think you are overreacting! Aside from everything else, your mum is quite likely to get upset all over again when her new room-mate passes on. It's not fair to deliberately subject anyone to that.
     
  4. Scarletgirl

    Scarletgirl Registered User

    Sep 4, 2015
    2
    Daisy Does your mum have a Social Worker you can speak to? If the LA agreed to pay for a single room they may think she's been moved into one and are paying the home accordingly - worth checking so that they can help support your absolutely reasonable request
     
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    I don't think you're over reacting either.
    Personally I think it is appalling that another person needing end of life care, is being put into a shared room.
    IMO it is not right for the person concerned or any of the family or friends who visit,
    It seems to me they are not thinking about you and your mum either.
    XXX

    I too recommend contacting the social worker if mum has one or adult social services if she doesn't
    Do let us know how you get on.
     
  6. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    Your mum is confused anyway, so why are they using this as an excuse not to give her a room of her own. The confusion is there, full stop. So give her a single room, it just makes no sense, what are they up to? Don't be kind or understanding, tell management this is what you want and if she is LA funded talk to her social worker. If its all down to funding then at least you will know why they are insisting she stays in a shared room, personally I see to reason whatsoever for single shared occupancy in care homes, would rather have a smaller single room.
     
  7. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Thank you for taking the time to reply
     
  8. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Thanks everyone for your support. I am so upset by this I feel sick to the bottom of my stomach. I really feel I am banging my head against a brick wall. There was a social worker involved at the beginning so I will try to speak to her tomorrow. Confused or not confused I think putting my mum through this (and me) is unforgivable. What upsets me more is that my sister thinks its ok and once again I am battling alone. Apparently the other resident who is a pest is worse in the afternoon which is when I visit and I should visit in the mornings. I DONT WANT to visit in the mornings when there are other activities going on. I want to visit when I want to visit and spend quality time with my mum while she still knows who I am. Is that too much to ask?
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,976
    Suffolk
    I think it's absolutely disgusting that they are putting an end of life lady in the same room as your mother. I would have gone ballistic if that happened to OH! There are so many issues here.
    If the home doesn't do anything, talk to your social worker and be very very emphatic!
     
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    I agree with everyone else. This is not acceptable. The CH does not seem to be tuned in to or interested in your mum's real needs. It definitely looks like an issues for the Social Worker to take on.
     
  11. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    I wish I could take you all with me to hold my hand. The trouble is that I am so emotional I will end up blubbing and talking nonsense!
     
  12. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    No, it's categorically not too much to ask! And your mum should have a single room, it's her right, and yours, to have a private, homely life.

    With you all the way, daisydi :)

    Lindy xx
     
  13. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    I know you'd rather not cry, but it's a completely natural reaction in these circumstances. I have 'cried a river' myself this summer....

    You will get your point across, even if they have to wait awhile....

    Sending you hugs and best wishes

    Lindy xx
     
  14. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,431
    In the area where I am the LA puts people in shared rooms in one home, because it is cheaper for them. A neighbour's Mum shares a room with a lady she doesn't like, which can't be easy when it is a dementia dislike. I hope you get some joy from talking to the social worker about the situation.
     
  15. chris53

    chris53 Registered User

    Nov 9, 2009
    2,929
    London
    Daisy,just wanted to send you a hug and hope and expect your social worker to get this distressing situation sorted pretty darn quick, it is not acceptable for anyone to have to share a room with a stranger,even worse one that sadly is on end of life care,please let us know how things are and you have the thoughts of us here with you, holding your hand.
    Take care
    Chris x
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    This used to be the case in our area, too, RR. Then a policy decision was made that everyone should have their own room - I believe it's been difficult to achieve, but it has become the norm now in this neck of the woods x
     
  17. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Hi, I can only agree with the others, that I think the whole situation is totally unacceptable. I too understand how you must feel - I was blubbering wreck at many points in Roger's care!

    My approach would be to put your requirement in writing, that way, the CH manager must take notice and must respond to you in writing. If she tries to respond verbally, just ask her to put it in writing. She will have to think more carefully about her reasons for refusing!

    Because I get very emotional over things, I have found this way works well for me, because I can formulate my letter to say exactly what I want to say (but would never be able to find the words verbally). You can give your reasons as to why you find it unacceptable for Mum to have to share a room with someone facing end of life care.

    Sending hugs and I hope this all works out for you. xx
     
  18. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    I agree, putting it in writing is the way to go, with a copy to S.S. and maybe even to your MP? If the care home see that you have sent a copy to the MP it may make them act more compassionately towards your Mum.

    Can I just add --sometimes writing a letter of this kind can seem overwhelming. I wonder if your Local Age UK or Alzheimers' Society might be able to assist with this? They are often well versed in using the right terminology to get things done.
     
  19. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    I made a very tearful phone call to the social worker and she phoned the home manager who told her they were concerned about moving mum to a different room as she is in and out of that room which we know and there are no single rooms available (there were 2 days ago) so yet again she has gone to the bottom of the waiting list. The social worker is going to arrange a meeting to try and sort it out but I dont hold out much hope. I told her I feel so strongly that I am tempted to bring my mum home with me or move her to a different care home but neither of those options will benefit my mum or me. Will just have to wait. Of course the home and staff will say it will confuse her which it will but this is not my long term plan for my mum and as far as I am concerned the sooner they do it then the sooner she will settle. I just hope they take me seriously now! Oh and by the way my sister agrees with me now so that's one positive!
     
  20. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    In addition to agreeing with everyone else - no, you are definitely not over reacting - but also surely it's not fair on the poor lady who will be receiving end of life care, or any relatives who may wish to visit her during this time.

    Is it too much to ask that at the end of life, people are allowed peace and quiet and a room to themselves?

    This whole situation just beggars belief, daisydi. I do hope you succeed in getting your mum moved quickly.
     

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