1. Buttercup24

    Buttercup24 Registered User

    Jul 17, 2016
    18
    Hello my mum has vascular Dementia and is 96, where I am preparing for her going to another world,the stress of lack of help from the extra care housing where she is living is causing further emotional concerns to me.
    I have been fighting for weeks to get an end of life care plan in place, and finally social service are coming to see her on Tuesday
    The manager at the extra care housing as been no support to me,and I rely on the staff their to look after her best interest.
    I am visiting three times a week.
    However am I right in thinking an end of life care plan should be in place and updated regular?
    Because of her needs changing so rapid I asked the manager to sit with me and we could put in a end of life care plan for staff to follow so they are all singing from the same rhyme book. She has been most unhelpful.
    Can any advise be given to me who to complain to about the non helpful ness for my mum. ... .
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    What difficult time for you @Buttercup24

    My feeling is that you will probably get more help from her GP. If he agrees that she is at End of Life then he will prescribe a "just in case box" that will hold all the medication that she might require and should organise the DNs to come in. There might be help available form other organisations like Hospice at Home, but I dont know whether they cover extra care housing. The manager might be unwilling to organise an end of life care plan until she has been deemed to be end of life by a doctor.
     
  3. Buttercup24

    Buttercup24 Registered User

    Jul 17, 2016
    18
     
  4. Buttercup24

    Buttercup24 Registered User

    Jul 17, 2016
    18
    Hello Thank-you for your help,I have spoken with the Gp several times, but unless mum is in any pain has not suggested any further help, however yesterday I meet with a social worker who is now going to get some end of life advise for me.
    The manager at the extra care housing has been very unhelpful to me. I am now waitng to se what input is given with the new social worker.
    You feel as though you are having to chase everything up . yourself
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    I am so sorry to hear of this situation. Just a point, you may be able to get CHC for the end of life care, to cover your costs. Worth asking the GP or social services. I got it the day after my beloved husband died, but they backdated it 3 weeks to when end of life had begun. Warmest, Kindred
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    5,890
    Female
    Scotland
    I feel for you on this one as I have just gone through it. I find that staff are very unwilling to admit that the end is nigh imminently perhaps for some legal reason that I don’t know. It was obvious to me that my husband was dying and though he received good care and attention no one would use the words end of life. This just in case box was never mentioned and would have made such a difference.
     
  7. JoannePat

    JoannePat Registered User

    Jan 24, 2019
    48
    Female
    We have had something similar with my mums care home. When dad and i mentioned how we would like mum to be pain free and "comfortable" the first thing the manager said was, "we (the CH) will be deemed negligent". She wouldn't discuss it further and said if they called an ambulance and mum was moved then basically they are handing over responsibility to the hospital.
     

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