forced IV and peg feeding

Discussion in 'ARCHIVE FORUM: Support discussions' started by zonkjonk, Nov 4, 2007.

  1. zonkjonk

    zonkjonk Registered User

    Mum had a fall the other week and basically fell "face first"
    she previously had been shuffling. I beleive her spatial awareness has deteriorated significantly.
    mum has been very agitated and was being given anti-pshycotics and anti depressive meds. they have discontinued aricept.
    due to the fall she had a brief visit at hospital and had a few stiches ....she has a huge lump on her forehead and 2 black eyes.
    mum had previously been mobile,verbal and eating well.(but with mod-severe dementia)

    got a call at 6.15 am this morning(sunday) from the NH to say she was
    "not responding neurologically" and that she was being transferred to hospital.

    She is suddenly no longer swallowing, non verbal and has no urine output.
    Therefore the hospital did blood tests, tested for a UTI, and did a CT.
    CT showed brain atrophy, no stroke. no UTI
    they think it is some kind of infection

    Hospital put her on a sedative, and as she ripped out her first IV, they shackled her to the bed. So she is now shackled with an IV and catheter and showing obvious signs of distress. she was fighting the shackles trying to remove the cathetar
    they still dont know what is wrong
    I know that she would have EVENTUALLY had trouble speaking and swallowing but I always thought it would be a gradual deterioration
    she cannot speak but from her moans etc i requested pain killers as they had not authorised any

    I have already decided no peg feeding should it come to that, but if she cannot or will not swallow a drink, how can I allow them to shackle her for the IV??
    I know that you can survive a lot longer without food than drink
    i think that what I am asking is what is the difference between forced peg feeding and forced IV fluids?
    watching her fight the shackles highly distressed was ABSOLUTE torture...
    I just dont want her to suffer.
    (if i had a thesaurus i would find another word for distressed)
    BTW...I have medical POA
    Please reply to the best of your knowledge
    Please help me help my mum (71 years)
    kind regards,
    Jo
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Oh dear Jo, that sounds horrendous. I've never heard of a dementia patient being shackled to the bed, and it must be so distressing for your mum.

    My first thoughts were stroke or UTI, but is these have both been ruled out, I don't know. They should be able to tell from a simple blood test if there is and infection. Brain atrophy does not normally cause such a sudden decline, as you say, it's usually gradual. I think I'd be inclined to demand further tests.

    As for the IV, are they perhaps giving your mum antibiotics through it? In that case it would be worth continuing to see if there is any improvement. If it's purely for fluids, then that's a hard decision you have to make, but I'd want to know what the prognosis is first.

    The shackling really worries me, where are your mum's human rights in all this?

    I'm so sorry, it must be awful for you to see your mum in that state.

    Please keep us informed.

    Love,
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Jo, I would ask the medics to leave her in peace.
     
  4. zonkjonk

    zonkjonk Registered User

    I chose hospitalisation should she become ill
    what if there is something else beside dementia causing this?
    I think that I cannot discontinue IV and shackles for at least 2 or 3 days just in case the hospital can do some thing
    I am torn apart.....
    I was prepared to refuse peg feeding but to refuse an IV seems wrong somehow

    If I could do what feels right I think I would take off the shackles and let her die if she would not swallow and rip out her IV
    I feel like I am forcing her to live in hell
    how can I tell the hospital to take off the shackles and discontinue the IV when it could be something beside dementia?
    I suspect it is not
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Jo,

    I believe the hospital has to try everything and be seen to try everything. I just think shackles is a bit extreme.

    Perhaps you could bear to give it a couple of days, but you will be living a nightmare for your mother.

    Have you discussed the pros and cons with the hospital?
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Jo, I think you're right, you have to try it for a few days. But please ask the ward doctor what he/she thinks.

    It's an awful time for you, and you have all my sympathy.

    Love,
     
  7. Whocares

    Whocares Registered User

    Mar 18, 2006
    27
    Hi Jo
    My first post on here for a really long time me but your post brought back some memories of my Mum and Dad.
    When my Mum took ill with an infection (alos suffering horrendous dementia)we were asked by the doctor what we wanted to do, He said she really needed hospital care but that she may not survive it. We decided to keep her in her room where she was familiar and he sedated her with morphine. My sisters and I stayed with her until she died after 2 days.
    I sometimes feel that we had a hand in her death but her life had become so frightening for her. In the few moments of lucidity she was petrified of what was happening to her.
    We had lost her already.

    In the case on my dad, He was "all there" but could not speak or move after his stroke, only enough to stop the medics trying to tube him. Again we were asked what we wanted to happen and all agreed he would not want to be here if he was not at least 95% back to his old self, The hospital made him comfortable and he died after 2 days.

    They both died knowing they were loved,My opinion on dying is different now as they both made it seem so peacefull.

    I realise the decisions we made would not suit everyone but I can live with myself and I know they will think we did the right thing, Whatever that is

    I really feel for you and hope you get through it.

    Joanie
     
  8. Helena

    Helena Registered User

    May 24, 2006
    715
    Hi Jo

    Last year my Mother was in a similar state with cerebral attrophy and mini strokes and i would have been horrified if they had shackled her to the bed
    She refused to eat or take medication and a C Diff infection took over ..thankfully the doctors were very caring and accepted that in no way would she have wanted to be in her horrendous state of confusion so they allowed her to slip away peacefully
     
  9. currywurst

    currywurst Registered User

    Jan 29, 2006
    46
    What a terrible situation for you Jo, I can't imagine having to see my mum in the situation you find your's in as it would break my heart, so I can understand how hard it must be.

    My mum fell flat on her face too about eighteen months ago and broke her nose, she too had black eyes and bruising. Luckily after being checked out at hospital she was allowed home. My mum had been fully mobile before this fall but afterwards she couldn't walk without support and then it was and still is only for a couple of steps. Mum also slept loads after, she didn't speak and I think the only reason she survived was because I fed her drinks and soup with a syringe until she healed up. My mum has never been the same since.

    What stuck me about your post was that your mum sounds really frightened. When my mum fell she was really agitated and in a lot of pain so I am surprised that your mum has not been on painkillers before you had to ask for them. I was wondering could your mum's decline be due to not having enough fluids since the fall? If she hadn't had an IV in before and the NH hasn't been able to get enough fluids into your mum by mouth due to her being in pain, then could that have caused the decline. I'm sorry if I'm clutching at straws. Sometimes when my mum is very agitated I lay on the bed beside her and stroke her face and talk to her to try and calm her down, it usually works, would that work with your mum? If she doesn't know what's going on it must be very frighening for her and being shackled to the bed can't be helping. If I were you I would have the shackles removed and continue with the IV if possible and see if once her fluids are restored if there is any change?

    I really feel for you and your mum.
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Jo,

    I have no idea how to advise you, not been through this kind of situation and wouldn't want to. I can quite see your point of letting your mum just pass away if it is her time to do so, rather than being shackled. But if the shackles are temporary and in a couple of days she settles and is able to be treated, then you will be glad you put up with it.

    I have a Muslim friend, whom I contact when I am desperate, to ask her to pray for people, I will ask her to pray for you, and she will. She seems to get a pretty good response from her god or Allah, or whoever he is. Fingers crossed.

    Do what you think is right Jo.

    Margaret
     
  11. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Jo,

    What a sad post and I feel for you in your difficulties. The shackles would be so distressing for you as well as your mum. Jo, I feel if I were in your situation I would also allow the hospital time to find out what is causing your mum's poor state.

    I definitely would speak to the Dr who authorised the restraints and find out what the future medical plans are concerning your mum. Let the Dr know how distressing you find the shackles. Has your mum got a temperature this usually indicates infection.

    I can understand you not wanting to prolong your mum's suffering. Hopefully the hospital will have some answers for you in the next day or two and then you can decide what you feel is best for your mum.

    I hope that there is some relief in sight for you soon. Caring Thoughts Taffy.
     
  12. zonkjonk

    zonkjonk Registered User

    thankyou all for your replies, I really appreciate it.
    what a difference a day makes.
    when I posted I thought she was dying because of the inability to swallow or speak,even though it was sudden. I watched my father die of a brain tumour and went through the "body shutting down" thing
    Mum was shackled in the ER but admitted awaiting a bed.
    when I rang today "the nurse is helping your mum go to the toilet"
    I never have heard such sweeter words.

    she has NO shackles now
    cathetar to be removed tomorrow
    they are doing more blood work and testing (again) for a UTI
    But today she has started to eat & drink (phew) and talk

    granted the nurses cant understand a word she is saying but that doesnt matter cause she is talking again
    hopefully we are over this crisis and she can return to the NH
    and I am feeling quite a bit better...no serious medical decisions to make (for now anyway)
    kind regards,
    Jo
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Jo, that's such good news.

    I can understand your panic, it must have been terrifying to see your mum like that. Hopefully, they've solved the problem, whatever it was, and your mum will soon be back at her NH.

    Love,
     
  14. zonkjonk

    zonkjonk Registered User

    thankyou hazel.....I can sleep tonight
     
  15. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello Jo,

    Just to join in with everyone and offer support

    BUT to also tell you that our Mum was in the same situation around a month ago - finally treated for a severe UTI and has made yet another one of her very own "miracle" recoveries.

    She's in a CH now but seemingly doing really as well as can be expected given the AD
    Would also be worth checking all current medication - it appears a lot of our Mums current problems were caused by her Prozac allergy. (including the UTIs)

    Thoughts are with you
    Germain
     
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Jo,

    Glad your mum has improved a little. It must all have been very frightening for you.

    Love

    Margaret
     
  17. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Jo,

    I was pleased to read that your mum is improving you must be so relieved, what a hellish thing for you to go through. Hopefully, your mum will have this all behind her. Take Care Taffy.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    Dear Jo,

    I am so pleased your mother has rallied. You can relax for a while.

    Love xx
     
  19. zonkjonk

    zonkjonk Registered User

    I didnt go and see mum today ...but I rang the hospital
    It is a holiday here (melbourne cup day) so I didnt speak to normal staff
    mum refused breakfast, is not speaking again. she had some soup and icecream at lunch.
    her cathetar(sp) was removed but she was unable to pass urine so they replaced the cahetar this afternoon. she is still on the IV with sedatives and pain killers

    and so the slow process of her body shutting down begins. my dad with a brain tumour took 3 months, my mum with dementia will probably take a lot longer
    before my dad was diagnosed I knew in my heart he was dying
    now I know the same for my mum
    I mean, I knew it anyway with the diagnosis of AD but now with her struggling to eat and drink, her failure to speak , her being unable to pass urine
    what is left of my mum?
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,896
    Kent
    I`m so sorry Jo.

    You got a glimmer of hope and now it`s gone. It`s a long painful process and I hope you have the strength to see it through.

    Love xx
     

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