1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #21 Brucie, Mar 7, 2007
    Last edited: Mar 7, 2007
    Can I give my own feelings on this? Just mine, you will appreciate.

    We live in a world where many things have been turned upside down over the course of a generation or so.

    * Things were nice - now they may not be, as dementia comes to stay.

    * Things that were child-like - inappropriate use of language [in whatever form] in mixed company, for instance - are now considered adult

    * Things that were adult - respect for the feelings and sensitivities of others - are now considered childish

    Now, my take on this is that no-one is actually wrong, on either side, in their own worlds.

    However, in a public forum like Talking Point, we enter neutral territory, a place where we can discuss all sorts of things, but also a place that seeks to be a home from home to everyone.

    The English language has a very rich vocabulary, and certainly, most members of TP are adult [we must never forget that we do get some very young people on here too, and that carries a responsibility for all of us], so there will always be ways of saying almost anything, in a way that may offend no-one.

    I'd like to think that, for the good of all, we can each one of us find ways of posting here that will be generally acceptable, in a community that is not only very mixed, but also very vulnerable.

    At the end of things, TP is here to serve the needs of the many.
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    My apologies

    I did not intend my post to be interpreted in the twisted way it was.

    I was talking about thoughts and feelings, mine in particular. (I am no saint)
    I would no more wish my Lionel was not with us, than fly to the moon.
    He is my life. Just wish his illness did not torment him so.

    Thanks for all the positive replies. Sorry if this post offended anyone.
     
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Crumbs, Connie ....

    You are not the one to apologise .... nor to think you are wicked ...

    And at that point I am biting my lip very hard .....

    Understood your sentiments exactly ... I'm sure many will understand mine about this thread without having to spell them out ...

    Much love, Karen ....
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,109
    Kent
    Oh we do Karen, we do.
     
  5. bagpuss

    bagpuss Registered User

    Mar 5, 2007
    7
    i have just read your thread, and i know that everytime i leave my auntie in the care home, i return home intears and think why cant it just progress so she no longer has the anxiety and anger and distress of knowing she cant do what she used to and and thats she is somewhere she knows is not home..
    I kept thinking i wasa very bad person for thinking this, but reading this thread(with the excpeting of the"shipman"bit.. which i shant comment on) has made me feel that i am not alone and hopefully it has made you feel the same.
    take good care of your self
    sending you hugs for your bad days
    ems
    x
     
  6. lou lou

    lou lou Registered User

    Nov 9, 2005
    46
    London
    Many years ago when I worked in nursing. I saw many patients being administerd intravenous morphine. Some were allowed to self administer the amount to keep themselves painfree.

    Sometimes when the patient was stll obviously in dreadful pain the quantity of the drug would be increased. Sometimes relatives would beg for there loved ones to me made more peaceful and the doctors would often oblige.

    Of course morphine depresses the breathing mecanism in the brain and the upshot is the very ill people in a great deal of pain were allowed to slip quiely away with all their loved ones round them.

    This is not Euthanasia this is the best palliattive care that we can give (although it's also about a whole lot more that medications involved in good palliative care)

    Kind regards to you all

    Lou Lou
     
  7. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    We, as carers, know more than anyone what this disease is all about. Which one of us would not select euthanasia when we are able to if we are struck down by the same disease?

    Why should we inflict on our families what we ourselves are having to endure?
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thanks Lou lou. That's exactly what happened with my mum. I knew that was what she wanted, having refused food for six weeks.

    Love,
     
  9. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Grommit....I wholeheartedly agree with you........
     
  10. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #30 CraigC, Mar 9, 2007
    Last edited: Mar 10, 2007
    Connie, you have not offended anyone. No need to apologise at all.

    So sorry this thread has gone so totally off-topic and I understand your thoughts and emotions. Soldier on and thinking of you. Craig
    x
     
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    My mother said "how does one know when one has reached this stage?" As far as I was concerned she had not reached that stage as she still had more good days than bad days.

     
  12. sunny

    sunny Registered User

    Sep 1, 2006
    598
    Connie, no you are not wicked just human. I watch Mum sometimes and feel the same, then I have a glimpse of what she used to be like and then back comes the dementia (it just cuts in and out). Mothers Day was ok to start with and then finished with Mum having a real dementia moment and I felt very disheartened.
    At least I have my understanding husband to help me, but for yourself it is so difficult. xxxxxxxxxxx
     
  13. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    Wicked never

    Dear Connie
    i have only just seen your post sorry --i take my hat off to you 24-7 care for 5 years i think you are a saint Not wicked i have only done it for 2 years and i try like you to make hubby be as normal as possible for as long as possible
    PLEASE dont question and torment youself for you from what i can see have been a star
    love bel xx
     
  14. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dearest Connie
    you do not have it in you to offend anyone. I know that.
    We all have the thoughts that you describe.
    I sit and look at Peg we , must be into year 12/13 now,I think how much longer.
    I then think what would I do without you,I don't have much of a life now but what would I do without you?
    I often cry out "I cannot cope with this any longer,but I do.
    Would'nt it be nice when Peg does go if I could quietly just fade away,becaiuse I cannot imagine life without her.
    Norman
     
  15. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Norman love,
    Don't know what to say - [[[[H U G ]]]]]
    Love Helen
     
  16. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Dear Connie
    As you know from my somewhat insensitive pm to you, it is just that statement which scares me rigid... There absolutely is a life after Alzheimer's for most of us. Going into care is for many an inevitability and the pain that is going to cause the person left at home is of course terrible... The emptiness of life -nobody to look after - followed by the creating of a new life, new interests and basically getting on with the business of living again.

    In my lucid moments I see the care home as a better place, eventually, for Monique to be. She will be constantly surrounded by people, have 'fresh' carers around 24/7 and after a while will totally forget me and all the past..

    People who are sent to prison acclimatize after about 6 months or so and it ceases to be a punishment, except for a few of the things you can no longer get.... And in older people that is less 'pressing'. In the French home I visited I saw that most of the 'guests' formed couples - friendships, relationships and had created a new social life for themselves - albeit in a limited areana.. But think how much more a limited areana it is at home with us... The patient is stuck with one person 24/7 with the intervention of people they have not chosen to keep them company... Do not forget that when at home with us they are constantly unhappy demanding to go home, go to their parents etc etc... Of course when in a care home they are going to demand to go home and in more lucid moments remember the person they were with 24/7 and want to 'go home' back to them - and as Bruce pointed out - going home is to a place which they remember as being safe and secure - And lets face it they are all pretty unhappy when they are with us ... Sorry - I have been pontificating... It's just the Connie problem is so close to my 'dark fears' at the moment and I have been trying to rationalise it... Hard of course.

    The whole point (I think) is that we too have a right to a life and at the point where the patient is 'ga ga' for most of the time there is no sense in trying to be there for the few minutes of semi-lucidity in a 24 hour period - is there?

    This like so many posts did not come out the way I intended.. I think that care homes are a suitable solution.

    Despite the inevitable indignation the Dr Shipman post provoked there is a real problem in this area as identified by Lou Lou. We do actually keep people alive beyond their 'sell by' date because we can. The drugs, nursing care, pain killers, tranquilisers and most of all medical nursing care keeps people alive who in a more primitive society would simply die. Would walk out of the 'tent' and not come back one dark and stormy night... Instead we protect and guard them... It is arguable that we actually interfere with nature.. I got into trouble on this forum for saying that if I got AD I would top myself if I could remember how.. Actually I meant it when I first said it and I mean it now... From what I can see it must be like living in a nightmare... I hate nightmares - wake up scared and sweating.. Hate the terror of being unable to find any logic - anywhere safe, any escape, any help. I do not know what the answer is but I do think the whole question of treating people in terminal distress is incredibly difficult and will raise the hackles of many to even discuss it in this PC world but I think it is worthy of discussion - and in many ways a front line forum like this is a good place to discuss it - I suspect most of you will disagree - but I just wanted to express what 'I think ' I feel about it.............

    Michael

    Michael
     
  17. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Micheal, firstly you have never sent me an insensitive pm. We have just shared some thoughts, and I feel, supported each other.

    I am sorry you feel as you do though. I need my Lionel in this world, having been widowed I know how final death is, I just wish that h he was not so tormented in his mind.

    Sincerly hope that things are more settled for you and Monique. Love
     
  18. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Connie hi,

    I only felt that because I wanted some absolution - for you to say it does not hurt when you put somebody into care - well not too much and I was not thinking when I asked that how much you were hurting... That was all.. this is all a bit too public for me ...

    really feel for you - so much - but what you are doing is right - I am certain of it.

    love

    Michael
     
  19. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Dear Connie

    Of course you are not wicked for wanting the distress to go away, for wanting Lionel to be more 'at peace', even if it means forgetting more than he already has. From my visits to this site you have always shown your absolute love and tenderness. I wish you well.

    Kate x.
     
  20. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    Reading other peoples stories I feel how lucky I am that Ron is not at all tormented in his Nursing Home. All through his illness he seems to be oblivious that anything is wrong with him but he just seems to accept everything and doesn't really mind when I come away. I visit 3 times a week and sometimes he seems to recognise me but whether he realizes I'm his wife is another matter. Perhaps he thinks "who's this strange woman who kisses me"
    I am so relieved that he isn't unhappy and I probably miss him a lot more than he misses me.
    Love to all
    See you at the party............
    Aileen
     

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