terminal stage dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by zonkjonk, Nov 21, 2007.

  1. zonkjonk

    zonkjonk Registered User

    got a call from NH this evening

    Mums urine output is decreasing and very dark
    oral intake decreasing

    Do I want to call the doctor or just keep her comfortable

    BTW I hate the phrase "resting comfortably"

    my dad, when terminal, was often "resting comfortably"

    my instinctive reply "call the doctor"

    then DH and I went into the palliative care discussion..does it include calling the doctor?

    I rang my old time nursing friend who told me to find out what pain relief measures were in use...I was pretty sure I knew that already.

    end result, I rang the NH back and confirmed they are using paracetomal (sp) and opiate? patches

    nurse confirmed that pain relief didnt seem to be adequate, so my instructions were to ask doctor to increase pain relief to morphine and no hospitalisation.

    can anybody speculate on how long my mums piece of string is?
    kind regards,
  2. connie

    connie Registered User

    Mar 7, 2004
    So sorry Jo. Just cannot imagine what you are going through.

    Just wanted to send you my love, and know that I am thinking of you and your dear mum.

    (Just off to see Lionel............don't like the idea of the future somehow)

    Take care , love n'hugs
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Jo,

    I'm so sorry. It's awful when you're asked to make that decision -- guilt whatever you decide!:(

    For the record, I would have done exactly what you have done -- and did, with my mum.

    How long is the piece of string? I guess it depends on the dose of morphine given, and your mum's residual strength. In my mum's case, it was about 12 hours.

    I'll be thinking of you and your mum today, Jo. I wish you the strength to get through it. And a peaceful end for your mum.

  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Jo,
    I`m very sorry you are going through this ordeal. I hope the piece of string is not too long.
    Take care xx
  5. zonkjonk

    zonkjonk Registered User

    #5 zonkjonk, Nov 21, 2007
    Last edited: Nov 21, 2007
    hi hazel & connnie,sylvia, I mucked up because I am very stressed sorry
    she is only 71,no other health issues besides this horrible AD
    at last I have tears on my keyboard.
    my friend told me "better this than being vegiative for months"
    so so true, but the nurse told me she is crying in pain and speaking(miracle)when asked if she was in pain replying "yes"
    so I direct palliative care, so I direct no medical intervention, and I direct "bring on the morphine", and no hospitalisation
    I cant do anything and it tears me up.
    its my mum, and I will continue to work through the pain to do the best for her
    I believe I have done everything I can to care for my mum,apart from take her home...I am no nurse
    my mum is a lovely,pretty,inteligent,sociable woman
    well...she was
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Oh Jo, such a sad post. I know how much you are suffering, and my heart breaks for you.

    You have certainly done everything you can for your mum. Nurse of not, you wouldn't have been able to give her the care she needs at home. But it is so sad to see a lovely, good life ending in this way.

    You'll be in my thoughts today. Like Connie, I'm now off to see my very sick husband.

    Love and hugs,
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Oh no you haven`t. You are devastated because you have been told your mother`s condition is terminal. You are shocked, you are distraught.

    I wish there was a way to help you through this, but there isn`t. Only deepest sympathy.

    Take care

    Love xx
  8. zonkjonk

    zonkjonk Registered User

    I mucked up

    its so hard to rememeber everthing you have read
    but I remember posts RE: john,lional.dhirian (SP)
    and of course brucie and jan
    I log on and read EVERY DAY but as I am so stressed I cant remember everything
    I so wish I could remember and offer advice but alas it is not to be
    maybe in the future
    tears on the keyboard again
  9. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007


    May your piece of string be of a manageable length.

    Your words brought back the last few hours of my Dad's life. You do a very kind thing.


  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Just keep posting Jo. There`s always someone here for you.

    Love xx
  11. nickyd

    nickyd Registered User

    Oct 20, 2007
    Hi Jo,
    Your story sounds like my story, only mine happened in September, when we lost my Mum to Vascular Dementia. We had the same decisions to make, like you. Mum was also on morphine patches in the last few weeks of her life. But still she was in so much pain and it was absolutely heart wrendering to listen to her screaming in agony. I will be thinking of you and your Mum and I hope you stay strong, you sound like you love your Mum as much as I love mine... Take care of yourselves, Nickyxxx
  12. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Jo,

    I have no experience of what you are going through, but I feel you have done everything you can.

    If I was in your Mum's position (and this is just my personal opinion) with no real prospect of recovery, I would like to be pain free and out of it. If that meant that the end was quicker so be it.

    I think it must be so much harder on you than on your Mum.

    Take care.
  13. clarethebear

    clarethebear Registered User

    Oct 16, 2007
    manchester, uk
    Hi Jo

    My heart is so with you at this time. Now I have stopped crying I can reply.

    I went through the same thing late last month and my Nanna passed on 2nd of this month. She was a strong lady and lasted a week on morphine alone.

    (((big hugs)))

    Clare xx
  14. connie

    connie Registered User

    Mar 7, 2004
    Dear Jo, hope your mum has had a pain-free day, and that you are holding on O.K.

    Your directives are just as I will say for Lionel (should/when the time come)

    Your mum is still the wonderful lady she has always been.
    Keep that in your heart and mind.
  15. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear Jo,

    I would have made the same call if that was my mum.

    Hazel, is so right here. I hope that your mum's suffering is soon over. Regards Taffy.
  16. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    My thoughts are with you

    Dear Jo,
    As my husband at 62 is in the later stage, I would not want him to be in a vegitated state. When we see our loved ones suffering like that in my personal view, I would prefer the length of string to be short. Early this morning I had a call from the N.H. Peter had a nasty fall and had been taken to hospital. 6" deep cut on his head. I had already taken my sleeping tablets so I phoned for a taxi. I am so glad I went because God forbid something had happened and I had not gone, I would never have forgiven myself.
    I pray for strength and courage for you at this stressful period. God Bless. Christine
  17. zonkjonk

    zonkjonk Registered User

    Thanks Christine and all of you, I read about Peter earlier today.
    He is so young, how awful this must be for you.
    No change with my mum.
    I have been in a bit of a fog today,staring mindlessly at the walls,not speaking to co-workers (even though I was at work)
    i guess that is shock. I mean we all know it is terminal but when terminal becomes inement (sp)it takes some time to absorb.
    unfortunately when I am highly stressed/upset it goes straight to my stomach.
    consequently, I am forcing myself to eat.
    "sick with fear" describes me this morning (literally)
    BUT I have strength and still went to work,albiet a little bit late.
    when my dad was dying the first thing I did every morning for about 2 weeks was to "lose" my morning coffee.
    I have absolutely no chance of joining the TP slimming club.
    poor attempt at humour there.
    I am now living by someone elses mantra
    "one day at a time"
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Take care Jo. There`s no easy way to get through this, but I`m glad you`re at work, and not stressed out by yourself.
    Love xx
  19. zonkjonk

    zonkjonk Registered User

    thanks sylvia, I just posted about my sensitive stomach :( and then went on to read about your dinner out.
    I read about the cold crying woman, sounds like a dream to me but who knows?
    I go to work because the only alternative is to curl up in a dark corner and hope the world goes away (I have had experience of curling up in dark corners)
    A few weeks ago, i realised I had a choice, go to the proverbial dark corner, or FORCE myself to continue on as if nothing is happening.
    I havent told my boss and co-workers yet about everything, but I will need to eventually.
    Kind regards,
  20. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Jo, please tell your boss and co-workers what you are going through. Anything to avoid the 'dark corner'.

    I've been there too -- it's so easy to get into, and so hard to get out again.

    We are all thinking of you on TP, but some actual support would help as well.


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