1. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    AS well as working ful time as the manager of a renal dialysis unit, managing my own family, Ive been caring for my mum with AD for three years.
    Over the last few months evenings and night time have become dreadful, mum gets anxious and wanders from 5pm through most of the night.I spend four hours with her every evening from 6pm till 10., but as soon as I get home she starts to ring me literally 30 - 40 times during the night.
    I told the SW that I couldnt cope anymore , and she agreed that I could look for a home for mum , though we need Social Service funding until her house is sold.
    This is approved via a "panel" who meet monthly, in January , mums case wasnt approved. SW told me she was high priority for the end of Feb, and she would definitely get funding. I found a bed in a lovely home which has been sitting empty for three weeks.
    Today they rang and said that mums case hasnt gone through again, and we can only hope that well be lucky in March.
    Ive hit the lowest point ever today, Ive coped one day at a time, believing that respite was on its way.
    I feel like running away and just dont know where Im going to find the strength to carry on.
     
  2. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Have they told you why it wasn't approved?

    Does your mother have carers at home?

    Wonder if there'd be any way of getting her a respite place for a week or so?
     
  3. janishere

    janishere Guest

    Get Tough With Social Services

    As a carer you can give reasonable notice to Social Services that you are no longer in a position to be the carer. Legally, from that point on, Social Services have a duty to take over your Mum's care. The SS knows this very well. So get tough with them.

    Your Mum needs a nursing home with a special Alzheimer's Unit. There is not much choice out there. If she is placed in a nursing home without specialist care for dementia patients, she will be rejected by the home and moved on, to another home or to hospital. It happens a lot that dementia patients get moved around homes, sometimes several times in several months. It's a scandal, but it's the way it is here. If you lived in Sweden or Denmark, it would not happen. But you don't. And you don't want this to happen to your Mum.

    The NHS should be paying for your Mum's care as she is suffering from dementia. She should not have to pay a penny and she should be getting NHS Continuing Care. However, it is quite a battle to get it. The website you need to look at for this subject is:

    www.fightthebureaucracy.co.uk

    You will find a lot of supportive folk on their forum.
     
  4. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Allylee
    I was very upset to read your post.It's clear that you are at the end of your tether.
    I think you will have to go back to the SW and explain exactly how you feel and you just can't go on any more and they must arrange some emergency respite care......this can be done.
    It's not fair to expect this of you.....you will end up making yourself ill.
    Please take care
    Love Wendy x
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Could you perhaps involve both your own and your mother's doctors in this? It really does look as if you're heading for a physical breakdown: not for nothing is sleep deprivation used to torture people.

    I recognise that you cannot afford to place your mother using your own money, and I realise that this is exactly what the deferred payment scheme is supposed to prevent, but have you considered other financial options? I'm absolutely for the idea that you should not let social services get away with this, but when you've reached the end of your tether, there comes a point in time when rather than standing up for your rights (which I totally agree you have) you might have to consider a more pragmatic approach. For example, what about a short term mortgage on your mother's home which would allow you to place her in the home you've found and tide you over until you've sold her house? Before everyone howls that this isn't fair, and it most certainly isn't, I'm just thinking about the effect this whole situation is having on you. How much is your own health and sanity worth? £100, £1000, £10000? I completely agree if you have the energy, you should fight social services tooth and nail, and in a fair society that fight wouldn't be necessary, but do you have that energy?

    Assuming you're still up to the battle, have you taken any legal advice? I note that you are in the West Midlands. Coventry has a law centre http://www.covlaw.org.uk/
    which provides free legal advice. If you're not in their catchment area http://www.lawcentres.org.uk/lawcentres/ should be able to point you in the right direction. Alternatively there is the CAB.

    You and your mother should not be put through this.

    Jennifer
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ally

    You sound at the end of your tether. I'm so sorry. I know how you feel about the sleepless nights. I'm suffering too, but I don't have a job and family to cope with too.

    You really need some support. Have you asked about respite? A few weeks would at least give you a break, and give you time to investigate other options.

    Failing that, could you pay for someone to stay with your mum overnight, or perhaps persuade SS to fund it?

    I do hope you manage to sort something out. Keep in touch.

    Love,
     
  7. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    thanks everyone

    Thanks everyone for your advice and support.
    I really dont want to put mum into respite mainly because I feel a temporary move will just add to her confusion, and Jennifer thanks for the practical financial advice.Im seeing the bank about a short term loan tomorrow to fund mum till the house is sold.
    Cases are reviewed each month and apparently there are those more needy who have been given priority this time. I guess I feel let down that we were pretty much promised it would go through , and it seems so wrong that the room is sitting there vacant with mums name on it.
    I did hit rock bottom this morning, but have reflected on it, and will carry on day by day, like we all do.
    Thanks to everyone on here who inspires and gives me the fight for another day.

    Love to you all xx
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Allylee

    Well done for being so positive. Hope you manage to get it sorted out. Keep in touch.

    Love,
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hey Allylee

    I'm impressed: it normally takes me several days to come out of these blue funks!

    Well done

    Jennifer
     
  10. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Dear Jennifer,

    loved your description "blue funks"and trying desperately to cheer myself up. Like most of us, I think Im sobbing one second and smiling the next. What a rollercoaster ride were all on.
    Its 1.50 am and mums rung about 15 times since 11pm. So Im browsing through the site ,clinging on to you all like a life raft.
    Sleep deprivation certainly affects your rationality and ability to reason, but trying to stay postive.
    Hey if the banks give loans for boob jobs these days, weve gotta be in with a chance :D
    Love to you all
    xx
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Allylee

    What would happen if you took the phone off the hook? Would she panic? It is impossible to think straight, let alone look on the bright side of life when you're dizzy with exhaustion. Do you not have anyone else who could take over phone answering duties, at least for one night?

    Jennifer
     
  12. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Hi Jennifer,
    its pure anxiety that keeps mum on the phone, and I have tried ignoring it in the past, but she leaves really distressing messages, which are upsetting to listen to.
    We have had an evening carer, but mums only calm whilst they are there, and then the panic sets in again.
    Unfortunately Im on my own here, my marriage broke down as a result of my comittment to caring for mum,my brother lives in the US.

    A friend advised me tonight to pester the SW daily until this is resolved.
    I guess thats my next plan of action.

    THanks for your advice and concern
    Ally xx
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    It's tough isn't it? I'm an only, but I'm in the US, and my mother's in the UK (Coventry actually). She's currently in respite, probably staying in the nursing home permanently, but I'm coming back over on Saturday so that we can see how she copes. When she was in her own place she would call me all the time: middle of the night, middle of the day - you get to the point you simply can't take it any more.

    Take care

    Jennifer
     
  14. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Tough and amazing.
    Mum cant remember who I am , but carries my number in a big diary everywhere!

    THanks Jennifer, so much.
    Hope your visit goes well.
    Love to you all
    Ally xx
     
  15. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Allylee,
    I think the pestering idea is good - get on the phone, tell the SW how desperate you are. Put it in writing as well, so it becomes part of your mum's file.
    Love Helen
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Hi Ally,

    As long as you are there, there`ll always be someone more needy to take Nursing Home places.

    I`m afraid the only way you`ll be listened to is to say you can`t do it any more.

    Your mother is at risk. You are living on a knife edge, and the way you`re going will be unable to keep up to standard at work. Things must change.

    Do you have an emergency SS number. If you do, I would use it when your mother phones during the night and tell them she must have help. It is cruel for both of you to be in this position.
     
  17. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Thanks Sylvia,
    I was up again most of the night with calls from mum, and in desperation went to SS at 9am this morning, refusing to leave till I had spoken to someone.
    They have agreed that mum can be admiited into the bed that is waiting for her for respite care.!! THey will review this on a week by week basis till the next funding meeting at the end of March, where once again Im assured her case will go through.Apparently it takes a week to organise this, so mum will be admitted next Friday.
    At least there is light at the end of the tunnell.

    THanks so much for your love and support
    Ally xx
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ally

    WELL DONE! Glad to see pester power wins again. At least you know you'll get a break, and hopefully it will be permanent.

    Love,
     
  19. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    That is fantastic news! Well done.
    Once she is in - if they talk about are you OK to have her out again after a week - the answer is no.
    If you don't feel that you can cope until next Friday - hassle them at the beginning of next week.
    Love Helen
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Well done Ally.

    What a shame you had to get to breaking point before you were listened to.

    Take note of Helen`s advice. Now is the time to really put your foot down. Don`t let them think a few days respite will solve your problems.

    If anyone from SS reads this and is offended, I apologize, but some people really do have to go through the mill before they receive help.

    Take care
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.