Confused about Mum

Discussion in 'End of life care' started by loulou73, May 2, 2016.

  1. loulou73

    loulou73 Registered User

    May 2, 2016
    4
    Hi,
    my mum was diagnosed with dementia (vascular) about 12 months ago - she's now 71. She has been in and out of hospital for the last 12 months and is still at home (my dad doesn't want her to go into care). My dad looks after her full time, but has carers going in to turn her and change her 4 times a day. She has been completely bed bound (not even able to sit up or move) for about 9 months. My dad has had Marie Curie nurses sitting with her at night occasionally, just so he can get some rest, as my mum is agitated all the time.
    Last Monday, the district nurses fitted a syringe drive to make her more comfortable, but they have been upping the medication each day as she is so bad.
    I sat with her on Saturday so my dad could nip out to get her prescription and she just cried out most of the time I was there. She swears an awful lot too (she never used to!) in fact, that's about the only thing she does say!! She hardly drinks and occasionally has a tiny bit of yoghurt, so she's just skin and bones now.
    My dad thinks he needs to keep everything from my brother and myself, so we really don't know what's going on. I did read my mum's notes while my dad was out and found he had signed a DNR.
    I have no idea how long my mum has left, but am I right to assume it's only going to be a matter of days because she has the syringe driver fitted?
    Sorry for going on a bit, just needed to explain and get some advice really.
    Thanks xx
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,570
    Merseyside
    Welcome to TP :)

    I'm sorry you've found us under such sad circumstances. A syringe driver is used for end of life care.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    11,099
    Female
    South coast
    ((((hugs))))) loulou
    Yes, you are looking at end of life. Is your brother there too?
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,303
    Yorkshire
    #4 Shedrech, May 3, 2016
    Last edited: May 3, 2016
    Hello loulou73
    I'm glad you found TP to ask your questions and share your concerns at this time - I hope it helps to share
    maybe gently let your dad know that you do understand the situation; he may relax to know that you know how things are, though he maybe needs to keep it all in to cope himself
    I'm sure he very much appreciates that you are there for them both
    very best wishes to all your family
     
  5. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    Thinking of you today. Your time with your mother is almost over. I agree with the others. It might help your father to know it's okay, that you know what's happening now, and you love him and want to help. I hope your brother gets there to be there for support, too. Hard times. Sorry.
     
  6. loulou73

    loulou73 Registered User

    May 2, 2016
    4
    Thank you all so much. It's terribly sad to see such a bright and beautiful person ravaged by such a horrible illness. Each day the district nurses have been upping her medication but it's not having much effect on her agitation. The doctor is coming tomorrow with a macmillan nurse (she had breast cancer 2 years ago) to look at the medication and look at extra or alternatives. X
     
  7. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    Nice that a doctor is coming out to check on things. My mother was very agitated at the end. It was most painful to be there with her and not be able to do anything but hold her hand. I tried singing to her, but it didn't work to calm her. Might be worth a try, though. My heart goes out to you. It's probably not much longer.
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    My Mum was also restless and agitated. The last time she was awake I told her it was OK to sleep if she was tired, that I would be OK, and that I would always look after her. She went to sleep and was very peaceful after that.

    She may be worrying about you and your Dad. Talking cant do any harm. So sorry you are at this point as it is very hard. Holding your hand.
    X
    Quilty
     
  9. canary

    canary Registered User

    Feb 25, 2014
    11,099
    Female
    South coast
    When my MIL was at the end we played her favourite CDs which seemed to help.
    Holding your hand during this period
    (((hugs)))
     
  10. loulou73

    loulou73 Registered User

    May 2, 2016
    4
    Spent time with my mum again tonight. They are debating taking out the syringe drive as they're not sure it's doing much. They're looking at changing the medication for her agitation as it's not helping at all. My dad has been asked again tonight about taking my mum into the hospice. He said she won't go as she's aware of what's going on.
    I'm not coping very well and had to see the doc today. She wanted to sign me off from work but I wouldn't. In the end my boss sent me home and refused to let me teach so the decision has been made for me.
    My poor dad got so frustrated tonight with my mum. He said she'd just been crying and shouting out all day. I'm worried for him too looking after her. X
     
  11. loulou73

    loulou73 Registered User

    May 2, 2016
    4
    Thanks for the advice about singing. I'm going to try and find the words to a lullaby my grandad used to sing. X
     

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