what a rollercoaster

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tina, Aug 8, 2006.

  1. Tina

    Tina Registered User

    May 19, 2006
    420
    This is just unbelievable! Came back from UK last week Tuesday after having said my goodbyes to my aunty. Very sad, very emotional, but very rewarding too. Get a phonecall last Fri saying we've taken her off the drip after another bleed, it'll be 3-10 days till you get a call to say she's passed on peacefully. So I'm sitting here, totally useless, watching the phone, thinking how is she, how is my uncle, how are they coping, I hope she's not in any pain, I hope they've made her comfortable and are good to her (I know they've done all that, it's just thoughts going round in my head). I speak to my uncle every day to give him courage and ask how he's bearing up.

    Today the phone rings, I see his number on the display and think hello, that's it. He says to me I hope you're sitting down. I say yes, tell me what's wrong. Well, he says, Aunty Jean started showing some REALLY strong reactions and the docs said there's no way they can keep her off the drip, sod the final pathway, etc, she's obviously NOT ready to go just yet. They need to give her fluid and ANH, so they've put her back on the drip. Apparently they tried to give her ice or icecream, and it dribbled back out of her mouth, but when they put honey on one of these little sponge thingies for oral hygiene, she bit it....and when they tried to put something up her nose for fluids and ANH, she pulled it out with her left hand. Well, blow me down.....what do we make of this?????

    I'm thinking two things here....my gut reaction is, oh God, if they continue with the ANH, she could be here for a long in a condition she would hate to be in and with no quality of life. The docs say she will never recover and she might yet get another bleed / stroke which could take her. What a rollercoaster for my poor uncle who, like all of us, was basically preparing for a funeral next week. And I don't mean to sound callous or cruel here ("what a bummer she isn't dying after all" or something like that. NO, NO, NO, don't mean that at all), we're going to be heartbroken when she does pass on, and we don't want her to go, I'm missing her already, and missing her dreadfully. But who are we to decide...

    The other thing is, well, if she's reacting, if she's feeling, if she's really attempting to communicate in the limited way she can, by squeezing a hand, by opening her eye, by pulling out a drip...well, that's telling us something and who are we to say, no sorry, it was decided you'd come off the drip and we're not putting you back on it....good God, nobody could live with that, least of all the doctors who are here to preserve life. It's just it's so unthinkable after the events of the past fortnight. Just goes to show you never know what's round the corner, and never underestimate people. And of course she should and must be given EVERY SINGLE opportunity, every possible help, support and encouragement in this situation. We'd never give up on her but see things through in whichever way she tells us to....

    At the same time, we need to be realistic. We're not hoping for a recovery, she's beyond that and the strokes have done too much damage. But obviously, there's still something there which says I'm not giving up yet, you know I've never been one to sit around and do nothing, I've never just accepted things but have tried to make the best of a bad situation. Maybe this "improvement" is only short-lived, maybe it's a sign of something else, maybe it's one last push and effort before she gets weaker and weaker, maybe, maybe, maybe.....no good speculating really, just take it day by day and see what surprises tomorrow holds, one way or another.

    Tina
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london


    Hope I do not sound negative. But that happen to my untie then when I thought god you have been listening to me .she was showing all the sigh like your untie of movement looking at me spoon feeding. I went back to England , 2 weeks later she had another stroke I went back to Gibraltar while I waited another week for the morphine to ease her pain while she died .

    I hope I have not upset you in saying this, but I just want you to know that you was not alone in those roll coater feeling .

    Just be postive for your uncle if he feels your untie is going to get better .(because we never know do we )
     
  3. Tina

    Tina Registered User

    May 19, 2006
    420
    No, we don't. And no, you haven't upset me, Margarita. I know we need to be realistic about any kind of "improvement" and realise it might not last given that she is so seriously ill. But you're right....we never do know. And it is amazing that this sort of development is happening at all. My uncle is confused, doesn't really know what to make of it, and what it'll do to his nerves is anyone's guess. But I know whatever happens, he'll come through, he won't be alone, and he would want anything and everything possible done for Aunty Jean while she's with us. Be it for a longer time, or only till tomorrow. It's the moment that matters and the closeness and the feeling that she is looked after well and not alone in whatever she may be going through.

    Tina
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Tina, bless you! Thank you for sharing this time with your auntie, and thank you for sharing that spirit - of hers and yours - .... that 'something' we do not nor may ever know .... but we keep our hopes that 'spirit' remains ...

    Much love.... Karen (TF), x
     
  5. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hello tina

    I went through a similar situation with my mum two years ago, she had a heart attack and suffered brain damage, that was on a saturday on the monday they said they were going to take her off the machines on the tuesday, and put her in a room were we could spend time with her before she passed away.
    well we had a miracle mum wasnt ready to leave just yet and in the next two weeks she was allowed home, although suffering from short term memory,
    unfortunatly our miracle didnt last long and this february she was diagnosed with dementia and that its so progressive she'll probably last 12 months so were back to square one.
    im not saying i dont have faith in the doctors but just that little bit of me wonders if they really know how long people have got left!!
    i think they sometimes underestimate the will of the patients

    i hope that whatever happens to your aunt she's free from pain and not suffering
    keep us posted
    take care xx
     
  6. Tina

    Tina Registered User

    May 19, 2006
    420
    relatively stable

    Hello all,

    just had a really, really good long talk with my uncle. He's getting good at long phone conversations - he used to be very uncomfy on the phone, my aunty did all the talking, but since she got ill, he's gradually started chatting more and asking more questions. Previously it was just "hello, how are you? ok, I'll put you on to aunty Jean now. take care, love, bye."

    Now that he's by himself at home, with Aunty Jean in hospital, we've been having long conversations (well, long by his standards - about 15 minutes, today it was 25 - wheeeee!!), talking mostly about her, but also about what he's been doing, how he's feeling on his own at home, what he's been up to. And he's been really forthcoming with information, initiating and carrying most of the conversation, and I'm just sooooooo pleased!
    We've always been very close, but he's more at ease with people when he actually sees them rather than chatting on the phone. (don't know - is that a bloke-thing? my dad's the same and my grandad too. Oh, golly, I'm probably skating on thin ice with heated blades here :D)
    Anyway, he seems to be coping well, and I'm so proud of him. There's a difference in him on the phone with me now, it's all so easy, he opens up and talks and I can react and give him some courage, or we just chat about everyday things - cleaning the car, going shopping, work, the news, etc.

    Aunty Jean is still stable. PEG feeding tube not till middle of September, but they've made a second attempt at the nasal feeding tube and that's been successful. Uncle Harry says she hasn't attempted to pull it out so far and she's getting different kind of "food" now than through the drip. She was awake and responsive (reacting to his voice, returning pressure of his hand, nodding or shaking her head) most of the day yesterday.

    This was a bit of good news I needed today, am having a bit of a rough time with grandparents at home who are both unwell, a massive assignment for my correspondence course which is nowhere near where it should be at this stage, and a close friend who's seriously ill in hospital. Yuk! More good news only, please!

    Take care,
    Tina
     
  7. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Tina
    glad to hear Auntie Jean's stable...

    Your post made me smile......years ago when I used to phone home dad always answered but it was always...."hello love....I'll get your mum"!!!! Thanks dad!
    As mums condition worsened....although I was unaware at the time(I always used to get"mums very deaf now so I'll chat to you!!!")...we too had long conversations....oh it was lovely!!!
    I really miss those phone calls now

    Love x
     
  8. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Yes, when my father was still alive he was always the one who answered the phone, then went yelling for my mother wherever she was, as if a phone call was always for her and always an emergency.

    Whenever I wasn't there I phoned 2-3 times a day, up to 30th April. Now ... there are no more messages from Shona or Podsnap. (Perhaps I'll have to invent imaginary friends of my own.)
     
  9. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    All the lonley ones

    Hi Tina, When people become lonley they dearly want someone to talk to. Looking after my wife 24/7 I talk all the time to myself and my wife. She can't answer her speech went about 3 and 1/2 hers ago. When she was in the NH I can recall the names of lots of lonely people, I enjoyed listening to them. One talked of the 1st world war, often they would repeat the same story. It still makes me feel sad not being able to bring a little light into their lives. There was old Burt would always greet me "Hello mate" then ask "Have you seen my wife". "Sorry Burt she passed away 20 years ago" The other questions "When is dinner and how do we pay?" I would tell him "This is a holiday hotel every thing is free and the staff are here to look after you." With me spending up to 9 hrs a day there some 'inmates' mistook me for a member of staff. It's now sad to think I always talked to myself (thinking out loud) when we lived in the remote countryside. My wife said "They'll take you away, I heard you argue with yourself" I pointed out it's OK as I always win, this is true. Embrace the complete person Alzheimer's and all and keep up the talking. God bless Padraig
     

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