Dying

Jbhc23412
Jbhc23412 Community Member Posts: 2 Listener

My brother brother was born 71 years ago with the umbilical cord wrapped tightly around his neck. Thus resulted in catastrophic brain damage, mild LD and CP. Despite predictions to the contrary, Edward learned to walk and talk, read and write.
When mum and dad died Edward had to go into supported living where he was consistently abused and or neglected. Despite our best attempts we could not get him anywhere to live closer to us which resulted in 20 years of me and my husband constantly battling social services and having to resort to damage limitation situations. For the last four years Edward has been subjected to the worst neglect and dereliction of care which has resulted in him being hospitalised for the past two months. He is now being “nursed in bed” at the local Community Hospital and his muscles are deteriorating to the extent that he can no longer feed himself, his breathing is becoming laboured whilst eating and drinking and he is unable to get to the toilet. His current care is outstanding and delivered with compassion.
I would be very grateful if anyone can share with me their experiences of someone with LD and CP in their final months. I have no idea what to look out for or how to help him and whilst the nurses are wonderful they are not specialists in CP.

Comments

  • Rosie_Scope
    Rosie_Scope Posts: 9,142 Online Community Team

    Hi @Jbhc23412, I'm sorry to hear Edward's health has been deteriorating after neglectful care, that all sounds awful. But I'm glad that his current nurses are treating him with more respect even if they don't specialise in CP.

    I'm afraid I don't have experience of this myself, but I will tag some of our CP team who may have some ideas or resources to share.

    @Richard_Scope @SaraC_Scope

    I hope Edward is as comfortable as possible at the moment. Best wishes to you all.

  • Richard_Scope
    Richard_Scope Posts: 3,998 Cerebral Palsy Network

    Hi @Jbhc23412

    Firstly, I send my love and support to you and your brother. Here is a resource that I hope will be helpful for you and the nurses caring for your brother.

    Palliative and end of life care — Learning Disability Nurse

    I'm happy that your brother is now receiving the excellent care he deserves.

  • Strawberry1
    Strawberry1 Community Member, Scope Member Posts: 9,132 Championing

    Sending loads of empathy and compassion your way

    My heart goes out to you

    Thinking of you

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 455 Pioneering

    Good afternoon @Jbhc23412

    I'm so sorry to read the appalling way Edward has recently been treated. Thank you for sharing the story and I hope you are also feeling supported at this difficult time.

    I would agree whole heartedly with @Santosha12 Edward's care needs should be met with a holistic approach, with staff providing clear communication appropriate for him and personalised care being a priority. It'd sounds like this is happening where he is currently being looked after.

    Best wishes to you all.

  • Jbhc23412
    Jbhc23412 Community Member Posts: 2 Listener

    thank you everyone for your kind words


    Richard, the link you sent is most helpful

  • Richard_Scope
    Richard_Scope Posts: 3,998 Cerebral Palsy Network

    No problem. We're here if you need to talk.

  • Jbhc23412
    Jbhc23412 Community Member Posts: 2 Listener

    thank you so much for taking the trouble to help

  • chiarieds
    chiarieds Community Member Posts: 17,413 Championing
    edited January 5

    A direct link to the video Santosha12 mentions: