1. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    phew what a night...

    went to see dad, my brother M was there with his g/friend and her son and his son....

    dad was on his bed, still refusing to eat or drink. He is now incontinent too...

    He rambled on lots, giggling at jokes only he could hear. He did at one point ask for coal to be put on the fire as it was cold!

    Myself and my brother were taken aside to be updated. They have changed his medication for the parkingsons, not because they feel it will make him better but to help his stiffness so they can move him better without hurting him. They have also prescribed a small dose of valium to help with pain and muscle relaxation.

    I asked about procedures if dad passes or if they think he is close to passing, and they said they usually ring the next of kin unless otherwise advised. I expressed my concerns at mum being rung in the middle of the night as she is now on her own and she would become anxious.

    My dear brother volunteered me as the 1st port of call.....mmmm

    I spoke to mum about it when i got home, and at first she wasnt best pleased, i said i was happy to do whatever mum wished, she thought about it rung me back and said actually yes it was best if the hospital rang me first :( hey ho

    Then mum rang back again to say a cousin of ours had rung as my uncle who lives in australia died at the weekend, he had the same conditions as dad!

    I havent seen him since i was 8 years old and have vague memories, now have contact with my cousin whom i also havent seen since i was 8....

    they say good always comes out of bad...i think i understand this..


    visiting dad is so very difficult, i just want to cuddle him and cry and cry and cry

    i want MY dad back......

    sorry i seem to be posting a lot of sadness these past few days, but i have noone to talk to

    love Jane x
     
  2. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Jane,

    Sending hugs and just to let you know we're all here for you,
     
  3. TED

    TED Registered User

    Sep 14, 2004
    154
    Middlesex
    understand how you feel
    and send hugs of our own over.

    Also had a mixed night with mum last night
    but we manage to get by and each day is a challange
    am away the weekend and feel little guilty just for that
    but will see everyone on monday as we're painting the hall

    hope your weekend is brighter for you all

    TED
     
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Jane
    Thinking of you too.
    Give your dad as many hugs as you want to,I am glad I did with mine.
    Almost a year on and I still want my dad back, but know he is in a much better place now,free of pain and distress.
    Cherish your mum too,you are obviously a lovely daughter.
    Love Kathy
    xx
     
  5. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    #5 EllieS, Sep 2, 2005
    Last edited: Sep 2, 2005
    Thinking Of You

    Dear Jane

    Isn't it horrible - just not right - Why your Dad, why mine? They don't/didn't deserve to suffer like this.

    My Dad knew exactly what he was not able to do and it made him feel absolutely useless - I just hope your Dad doesn't.

    I so wish I had more time to try to understand everything - but also wish I could just shut off. Mum and I went through it all with Dad and now I'm going through similar with Mum.

    Even though Mum's sisters are very supportive, I too feel it's all on my shoulders as my brother and his family has no interest in Mum whatever. They had a bit of a bust up about ten years ago, and although they "got over it" he's now decided that he's concentrating on his own family now. Everything I was doing was wrong, everything I was saying was wrong. I thought we had a pretty good childhood & upbringing but apparently we did not!

    I'm pretty depressed at present and just wish for Mum's sake that he would show some interest - even a quick phone call or letter would be nice for her to receive.

    Sorry to go on.........but I do know how you're feeling and there's nothing anyone can say to help you - but you do know that you are doing your very best and your Dad, I am sure, would love you all the more for that. Kiss him, cuddle him, tickle him, stroke him as long as you can - and sorry to be a bore because I have said this before, but the Parkinsons Disease Society has a help line with a Nurse on line and they really are extremely supportive in every possible way.

    Do take care of yourself and think good things.

    Luv
    Ellie
     
  6. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    thank you all

    what else can i say, all your kind words mean so much

    i am cherishing my mum....we are building a wonderful relationship.....always i will treasure that...

    can i say too, how much i cherish my partner? mmmm will do a separate positve thread methinks!!

    love Jane x
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Jane, thinking of you and also sending you a big hug. As your cousin says, good things can come out of bad, you mention how much you value your partner and your special relationship with your Mum for a start. Then, you have a new friend in your cousin, who totally understands what you are going through. My Mum always said every cloud had a silver lining. I know I have gained from the sadnesses life has thrown my way, even if only by learning about something, then using the knowledge to help others. I am sure you will too when you look back. Its just hard to find any good when it is actually happening isn't it.
    Sounds as if your Dad is being kept comfortable which is good, just be there with him as much as you can and let him know how much you love him. That is the best you can possibly do, love surmounts all things even dementia.
    Ellie, big hug to you too, sorry to hear you are feeling down. Its a strange thing, but it often seems to be the way of things that everything lands on one set of shoulders no matter what. Try to make some time to be kind to yourself a bit.
    Do hope you both have a better day tomorrow and that the sun shines for you. Lotsaluv, She. XX
     
  8. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    You know when you are down, really down...... there is only one direction to go and that is up. Maybe not this minute, or tomorrow but sooner or later you will be lifted up.
    I am so sorry about your Dad. It is so difficult to watch them evaporate from our lives so slowly.
    I have one brother and four step siblings and I am the only one that takes care of my folks. IT really stinks and all I can say is what goes around, comes around. Someday they may be in need of care and all they have taught their children is how to avoid it.
    Take care,
    Rummy ( Debbie )
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Debbie
    your post raises so many things that we have spoken of before.
    The evaporation of relatives,friends?,and others who we thought cared.
    To see a loved onr slipping away and no one sems to care.
    They don;t even telephone,call in fact they do nothing except live their own selfish lives.
    The only consolation is that my Peg doesn't remember who has been in touch and who hasn't,so there is no hurt for her.
    As you say what goes round comes round.
    Why couldn't all our lovely TP family be living nearer to each other?
    Norman :(
     
  10. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    I second that, Norman!

    We have made some lovely friends connected with our local Alzheimers group, in fact this morning we have been outside the local superstores with charity containers and stickers for Alzheimers, it is wonderful how many people are so generous.

    Best wishes.

    Carol
     
  11. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Just think how isolated we would be if it weren't for the internet ! This forum has done wonders for me ! I never would have dreamed that I would be in contact and have so much in common with all of you across the pond. Thanks everyone for opening your hearts and baring your souls.
    Debbie
     
  12. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    "your post raises so many things that we have spoken of before.
    The evaporation of relatives,friends?,and others who we thought cared.
    To see a loved onr slipping away and no one sems to care.
    They don;t even telephone,call in fact they do nothing except live their own selfish lives.
    The only consolation is that my Peg doesn't remember who has been in touch and who hasn't,so there is no hurt for her.
    As you say what goes round comes round." (sorry dont know how to do the quote thing :eek: .......

    anyway.....visited the hospital today, and was "told off" by one the nurses....

    "where was you last night? your mum said you were visiting!"

    Nope not me i told her, but my elder brother was supposed to be.....guess he didnt eh?

    nope she confirmed no visitors last night.

    Dad been on this ward since beg august....so nearly a month, my eldest brother hasnt visited once. i find this hard to deal with, i feel very angry.

    if he was to say "i want to remember dad how he was, i cant visit" then i would understand, but he uses many many bad excuses...which in turn make him seem like he doesnt care.

    Dad was up today and in a wheelchair, he recognized me i think, he drank a carton of special juice. we cuddled lots.....i wanted to cry lots too......today i think i found the hardest day yet, and yet he was so much better than he has been this week.

    i think i felt sad because i saw glimpses of who my dad used to be...

    my mum and i spoke today to the children, answered their questions etc
    they were saying how wonderful this "new" nanny is.......a nanny with no stresses and worries...

    yes every cloud does have a silver lining....but i wish i could have the mum i have longed for and the children a nan who is so much fun, without it being at the expense of losing my dad :(

    i could ramble for ages....but i wont

    love Jane x
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Oh Jane, sending you a big hug my love, hang on in there. Hope tomorrow is better. Love She. XX
     
  14. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Thank you She...

    love Jane xx
     
  15. Dianne

    Dianne Registered User

    Sep 5, 2005
    17
    Flintshire
    Hi Jane

    I'm sorry you're having a bad time. My Dad passed away last year and I still want my Dad back, it's hard when you suddenly realise that your dad can't be there for you any more and he walks holding your hand as you held his when you were small. But it is a privelage to be there for your Dad, right to the end, I was fortunate to have such a lovely Dad and I am so pleased that I 'looked for his army platoon with him', 'chased away the people' who looked in at his windows and held his hand while he passed to a peaceful place. I wish you all the best, cherish your memories and think, he is still your Dad he just needs your love even more now.

    Keep your chin up
    Dianne
    x
     
  16. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Jane
    Wow you have just written what i would have done 5 years ago, this was when my dad went into hospital. I went through all those emotions along with the 'brothers and sister that did not visit'!!
    Don't let the anger build up - you waste your energy on things that you can't change - accept them for what they are!!!!
    I did not know about this site until Dad was moved to a nursing home a year later - these people become good friends - to be able to vent is a god send.
    Love to all take care enjoy what you have intermittingly. Sue x
     
  17. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Thank you Dianne and Susan

    love Jane x
     

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