1. carer85

    carer85 New member

    Nov 12, 2019
    1
    Hi everyone

    I’m new to this forum and just looking for advice from anyone who has experienced the end of life stage in dementia.

    My mum has had dementia for 17 years now, and a week ago 3 separate doctors advised that she was seriously unwell and needed end of life care.

    At that point, she was bed bound and in pain, so they started injecting morphine into her. She was having the odd spoonful of weetabix and had to have her fluid injected into her mouth as she was unable to drink by herself.

    Two days later, we got a call to say they were going to insert a syringe driver to administer morphine on a more regular basis.

    Two days following this, she was no longer eating and couldn’t swallow any more, so she is now being given liquids on a sponge that she can suck.

    We are now one week down the line since the initial phone call, and we have just had another call to say her breathing pattern has now changed and is more laboured...

    I just wondered if there was anyone out there who could give some guidance on how long their loved one lived from the point where their breathing pattern had changed, and they were unable to swallow any more?

    It’s so hard watching her like this.

    Thanks in advance.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,898
    Female
    Dundee
    Hello @carer85 and welcome to the forum.

    I’m so sorry to hear that your mum is at the end of life stage. I think this stage can be different for everyone. My husband was in hospital for a week with aspirational pneumonia and he died around a day or two after his breathing changed significantly.

    My mum was at home with us when she died. I think it was more than a week she lived on. As I say I think everyone is different.

    There is a good Marie Cure book on end of life. If you give me a minute I’ll come back with the link.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,898
    Female
    Dundee
  4. Pete1

    Pete1 Registered User

    Jul 16, 2019
    227
    Male
    Hi @carer85, it is indeed a brutal thing to bear witness to, and it does vary in duration (I experienced it with both my parents). It does sound as though your Mum's pain is being managed and that she is being cared for. I know it's painful and soul destroying for you to go and see Mum but what I always tried to remember is that the GP told me the hearing was one of the last senses to depart, so I would sit with Mum, hold her hand and talk to her. Stay strong.
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,830
    Sending you both love & light.
    Xx
     

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