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    Old 11-04-2007, 02:46 AM   #1
    zonk
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    feeling helpless and distressed - please help

    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

     
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    Old 11-04-2007, 04:34 AM   #2
    Martha H
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    Re: feeling helpless and distressed - please help

    Dear Jo,

    I am so sorry. You must be worried sick. I am unable to help you figure out what went wrong, but it is certainly not the usual course of Alzheimers, which is sloow and seems to take forever. It must be some other kind of infection. I am praying all will be well and your Mom will continue to do better.

    Love,

    Martha

     
    Old 11-04-2007, 08:16 AM   #3
    WasFatNoMore
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    Re: feeling helpless and distressed - please help

    My Grandmother went downhill real fast, stopped eating, drinking, walking and was gone in a week. It was like the spring just ran down, fast but I suppose merciful.

     
    Old 11-04-2007, 08:18 AM   #4
    Gabriel
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    Re: feeling helpless and distressed - please help

    I too am truly sorry for your Mother's distress. Nobody can tell you what is best for you and your Mom. You need to have a long heart to heart talk with your Mom's physician and express your concerns and question. He will be able to tell you what they are doing and why. Never hesitate to chase a doctor down and question what he is doing.

    In a hospital setting, one of the differences between a peg and iv is that the iv is used to transport medications into the patient. I did have a situation with my dad about a year ago. He was in the hospital for unknown reason. They suspected a stroke and hooked up the iv. By the time he became aware of his surroundings again we had determined it was an accidental medication overdose that Mom, in her confusion, had given to him. The night he "woke up" he was combative, aggitated, and pulled out his iv. I happened to be there. I knew the cause of his condition by then and refused to let the nurses put the iv back in or use soft restraints and requesting that I talk to the doctor. The nurse balked but when I told her flat out we refused the IV and had a right to refuse treatment she left it out. The doctor told me as long as he thought Dad was in danger the iv was important for quick drug administration and hydration but he didn't think that was any longer necessary and it was dad's right to refuse any treatment. So they left the iv out for the remainder of his visit. That is not the only time we have "refused treatment"..... but we have always done it knowledgeable after much discussion.

    Another time I watched my grandmother in much the same situation you are in now. They were feeding massive amounts of antibiotics into her system by ivs to fight an infection. When they came out of the room to inform my mother that they had been successful in fighting the infection I remember well my Mom asking this question...... "To what end?!" I truly didn't understand it then but I do now. Nannie spent two more years in a nursing home bed immoble, incontinent, and basically unaware of her surrounding.

    We don't know the future or how your Mother will come through this medical treatment. She may be back to herself as Dad or like Nannie. So the decision as what to do is yours with knowledge of your specific case. So my best suggestion to you is to talk to your Mom's doctor. Find out as much as you can. Talk to other medical professionals that are familiar with her case. Don't leave any quetion unask or doubt in your mind. Then stand up for what you think is right and don't let anybody stand in your way. And once that decision is made know you have done the best you can with the knowledge you have at the moment and leave the guilt behind.

    Know you will stay in my thoughts and prayers...

    Love, Deb

     
    Old 11-04-2007, 08:30 AM   #5
    Dingoes
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    Re: feeling helpless and distressed - please help

    Gads, Zonk, I'm so sorry for what you're going through! My grandmother also had to be restrained her first night in the hospital because of ripping out her IV, but they then got it on so tight (it was almost like a cast) she couldn't get it off and they took her out of restraints.

    The problem with hospitals is basically, they are legally obligated to do everything they can to save your Mum, whether she wants to cooperate or not. That includes restraints if needed for IV meds and hydration. I don't think you get a choice about IVs in the hospital -- if you wanted to discontinue that (which doesn't sound like a good idea to me) you'd have to check Mum out.

    As to peg feeding, this is a term I haven't yet encountered so I can't comment on it (I'm very new to all of this myself).

     
    Old 11-05-2007, 02:17 AM   #6
    zonk
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    Re: feeling helpless and distressed - please help

    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

     
    Old 11-05-2007, 07:36 AM   #7
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    Re: feeling helpless and distressed - please help

    That is good news Jo. You never spoke truer words. "What a difference a day makes!" It seems we are all on the big dementia roller coaster with all it's highs and lows. May you have smooth going for a while.....

    Love, Deb

     
    Old 11-08-2007, 02:31 AM   #8
    zonk
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    Re: feeling helpless and distressed - please help

    5 days in hospital now, with no change,mum still on cathetar, IV,sedatives, pain meds
    Mum is not eating,drinking,urinating, evacuating,speaking...I hope she will recover,but I suspect she is dying
    all diagnostic tests are negative.
    poor mum only 71 years old.

     
    Old 11-08-2007, 04:10 AM   #9
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    Re: feeling helpless and distressed - please help

    Oh no, I am so sorry. You and your Mom are in my prayers.

    Love,

    Martha

     
    Old 11-08-2007, 08:25 AM   #10
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    Re: feeling helpless and distressed - please help

    You and your Mom will stay in my thoughts and prayers Zonk.

    Love, Deb

     
    Old 11-08-2007, 10:06 AM   #11
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    Re: feeling helpless and distressed - please help

    Oh Zonk..I just got to the board and read your post. I am so sorry. It's excruciating to watch someone go thru this and not be able to help.
    You, your dear mother and your family are in my thoughts and prayers.

    Love, Barb
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    Old 11-08-2007, 01:06 PM   #12
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    Re: feeling helpless and distressed - please help

    Hey Zonk,

    Sorry to hear about Mum's decline .. what an awful time for you !!

    My heart and prayers are with you during this difficult time, but try and remember, if this is Mum's time, then soon she will be whole and at peace again.

    71 is too young, but in her spiral downwards with this disease, the sooner the better. My FIL died at 71, it would have been earlier if he and I hadn't been a pro-active team in his healthcare. But lung disease is so different from AD I can't really compare.

    Sorry you and Mum are in this position so soon.

     
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    Old 11-08-2007, 09:35 PM   #13
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    Re: feeling helpless and distressed - please help

    Zonk, I'm so sorry to hear what you're going through with your Mum. That's so young to go nowadays. But the bright side is, it sounds like her pain and suffering will be over soon, and that really is the best I can wish for both of you.

     
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    Old 11-13-2007, 01:31 AM   #14
    zonk
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    Re: feeling helpless and distressed - please help

    h everyone,
    the doctors took mum off the IV to see if she could sustain life orally and determined that she could so mum went back to the NH today.
    NH rang this evening , mum has been found on the floor 3 times since readmittance. She is back on the cathetar and not eating/drinking much.(or speaking)
    NH now wants "in writing" my wishes for medical intervention
    I have medical POA.
    I have already decided no peg feeding,no restraints and I dont know know what else to cover in this letter.
    I want them to continue to administer drugs, treat infection, but NH in australia dont "do" IV`s
    so I dont know what happens when it gets to this.
    Should I continue to allow them to take her to hospital for re hydration via IV
    I dont know how they are getting the medicine into her now?

    I do not believe in the phylosiphy (sp) of sustain life above all else as she has a terminal illness
    I do not want to make my mum suffer (any more than she already has)
    any advice on how to write this letter gratefully received.
    Kind regards,
    Jo

     
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    Old 11-13-2007, 04:02 AM   #15
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    Re: feeling helpless and distressed - please help

    You may need to tell the NH to call you before they transport your LO to the hospital. My Dad made numerous trips to the hospital and always came back in worse shape than before. I was worried they would find him unconsious and send him again, so I sent them a letter telling them they had to call me.

    Can you get hospice care to come into the NH?

     
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