We are in this position, and choose which way we go

Discussion in 'ARCHIVE FORUM: Support discussions' started by lesmisralbles, Feb 8, 2008.

  1. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    When I met my husband 25 years ago, we fell in love. I was 35/36. I did not ask his age, he was my swimming teacher. After several weeks, his mother came with us for a Sunday lunch to a pub, when Ron got up to get our drink's, she said, you know he is 23 years older than you. She did not like it. Had many a battle with her. But we stayed,together Ron and I.
    And we are married. Ron's mum has sinced passed away.
    Did I ever think that we would be in the position we are in today - NO
    Would it have changed my acceptance of Ron, knowing what the furure held - NO.
    I am sick of family, friends etc, telling me how brave I am, how hard I work, how tired I must be. Do not get me wrong, I love them all, BUT.
    I know everyone means well, but none of them ask's to talk to Ron, he is still here, he might be a bit confused, but for god's sake ask him how he feels, keep him in the loop. At Christmas, Ron was with us all in the lounge, after lunch, but no one struck up a conversation with him, I had to keep trying to include him. Do you not all feel that it becomes," Taboo", lets not mention IT, lets pretend IT is not there. Because if we do not mention IT, WE will not be embarrassed, because WE do not know how to respond, so do not put us in this situation.
    We are embarrassed, "THEY", are lost for word's.
    Why ? are people scared, we are all going to die, for some of us it will be a gentle step into the night, for others a fight. Let us who are like me, proud and glad we met the person we did, shout it from the rooftops.
    I shall after Ron leaves me, have a tattoo, across my BUM, yes, saying I am a human being, I was once like you, and one day you will maybe, be like me. So, be careful how you wipe it.
    Because, if not, I will send a big bird from the sky, to Cr-p all over you.
    To the ones, they know who they are on this site - I thank you all. You have been wonderful
    Barb XX
     
  2. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Crackin post Bard!Ignorance is unfortunatley bliss for some folk.lets not ask about it and then we won't know!lets not ask if these folk want to have a day in the life of a sufferer and their carers!they perhaps won't want to know!
    Well done hun for what you do,gos bless.elainex
     
  3. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Thanks

    Thanks Elaine
    Barb
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #4 Margarita, Feb 9, 2008
    Last edited: Feb 9, 2008
    we live in world that seem to value what people do rather than who people are .


    we can make an active choice to not just do unto other but be with others in their sense of reality -- in their sense of who they are


    I read that in a love book I got from the Alzheimer's Society Called Being an approach to life with Dementia . David M Shaeard.


    I was amazed to read in the book quality I have,
    I believe in to , sound like you do also .

    it ask the reader of the book to agree to look inside yourself at your emostions and the meaning to your life .

    Its also for people who have a diagnosis of dementia, or other condition an education and surport pack for families / friends, learning resource a staff handbook , a manger's framwork.

    Really lovely book to read .
     
  5. 117katie

    117katie Guest

    When I met my husband 30 years ago, we fell in love. I did not ask his age. We were colleagues in the same profession, not working daily together but often meeting. Then we met more often than was required by our professional contact!!

    We too have a difference between our respective dates of birth - don't we all? We have had many battles over our years together, but not necessarily related to our dates of birth.

    Both of our sets of parents have also died since our meeting.

    We both have families "out there" and we both have closer connections "here now".

    Like you, we never knew what our 30 years together would bring to each of our lives, before - during - and since our meeting.

    Like you also, I wouldn't change it for one moment. And as far as I am concerned, the rest of the world can go hang, because as long as we know where we are, and why we are where we are, who cares?

    The difference perhaps between our situation and your situ is that neither I nor my husband has dementia. However, we have both had the fortune to have family members with dementia, so we have both spent a good few years' worth of effort helping, supporting, and dealing with those family members.

    So life is what life brings you. As Elaine said "ignorance is bliss" for some people. But NOT FOR US. Because we cannot stand on the sidleines and plead ignorance, or even desire ignorance. We are in there, dealing with that which has come our way by no choice of our own, by nowt to do with anything we may have done, nor to desire or encourage it to come our way.

    THAT IS JUST THE WAY IT ALL TURNED OUT FOR US.

    As I suspect Elaine may also say I AM WHAT I AM and YOU ARE WHAT YOU ARE and LIFE BRINGS US WHAT LIFE BRINGS US.

    So, dear Barb, am with you 100% of the way.

    However, MY OWN BUM may be too big for such a small message that you envisage!! I can add a fair few words - lines - even paragraphs!!

    TAKE CARE

    KATIE
     
  6. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Add a few extra word's for all of us

    Hi Katie
    Add as many word's as you want, by the way, my bumn is not that small.
    But, I am leaving space for a few other thing's I would like to say, and I am sure there will be many.
    Barb:)
     
  7. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Thanls Margarita

    Thank you for your reply
    Yes, people value differerent things. WHY ?
    Barb
     
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Barb

    Don't be too harsh on people, rellies and friends, they simply don't know what to do. Before my mum was admitted to the Care Home in August, I had never been in a care home in my life, and never conversed with anyone with AD or similar. I really would have been frightened to death of saying or doing the wrong thing.

    Now I am an "expert", and love it! I go into the home and a whole raft of residents say "Hello" to me, and then proceed to ask me who I am - again. Obviously I converse mainly with my mum, which involves the usual "Are you alright?" "Have you heard from the girls?" "Is Chris alright?", and then others will chip in to ask my name and where I live (again), and I ask them in return, and they love it, it is dead simple. I ask about their children (I avoid husbands in case it is sensitive), where they used to live, what did they do for a living. Turns out one woman is the sister in law of a manager where I worked in my early twenties, whom I absolutely hated - and so does she!

    Today Rugby was on the telly, Wales and Scotland and I know one lady is Scottish, she was asleep and I woke her up and said Scotland is on the telly, she was thrilled. Unfortunately, I nearly started a fight, cos another lady supported Wales, but we forgot it all over a cup of tea and a home-made Maid of Honour, and I went round the room and asked if they had enjoyed it.

    My husband visits mum rarely (3 times in 7 months), and he is hopeless. He sits and smiles at her for 10 minutes, then turns his back on her to watch the telly. I hiss at him "Say something", he says "I don't know what to say", so I said say "I've been busy at work this week". "What for?" he says. "Try it" I said. So he does. It gives a good 15 minutes. Oh, do you go in on the train? Are they on time? No, always late. Oh, what do you do then? How much does it cost you? Gosh, what a lot of money. etc. etc. But, Barb, he wouldn't know where to start if it wasn't for me.

    I'm glad to say you develop a knack of talking to people with AD, depending on their level of understanding. One lady in mum's home is always interested in the weather, so I give her an update. Three times at least during my hourly visit. Another lady is always telling me about her job as a patissiere chef at a large local hotel, so I ask her about it now. Did you ever make a mistake and produce a load of rubbish? Did it all curdle? Were you there when Princess Diana came? Yes, she was there, 15 times!

    But, Barb, 8 months ago I couldn't have done any of that, I'd have been like your relatives, totally devoid of imagination as to what to say.

    It is too common to think that if someone has AD they are totally "do-lally" to use the phrase, but everyone apart from those in the very latest stages has things they can talk about.

    But don't blame people too much. It's a bit like the "Does he take sugar?" question with physically disabled people. We are all useless at it. I wonder if such communication should be taught in school?!!!

    Much love, and hope your next family gathering is better.

    Give them all a few hints beforehand. In fact, you have given me an idea to produce a little leaflet advising people on how to talk to a person with dementia - i.e. normally, just don't expect a normal response.

    Bye for now

    Margaret
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #9 Margarita, Feb 10, 2008
    Last edited: Feb 10, 2008
    what a warm hatred post of your day in a care home.

    I am commuitcateing with my mother on a level that I have never done in my whole life and I am finding it hard to cope with my emotional feeling, (That why I got that book above)
    and the people, I meet that are meant to be my mother friends, I find that they can't deal with they own feeling of end of life stage let alone my mother .

    Its like they just see the end of life of my mother . they not looking at my mother the person , they just bring up they own perception how they perceive life to be on a conscious level in they thoughts , so blocking any empathy for any one that different to how humans are mean to look like, talk, because they scared as it could happen to them . So they don't go there . They just block the feeling. when really they no fear in feeling the feeling of empathy.



    Your lucky with the age Gap and still getting on . My Ex was 20 years older then me . It never work out . While I grow up in the relationship , I grow away from him. Please to read that it work out for both of you
     
  10. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I understand your frustration at friends and relatives but they're mostly just afraid of doing or saying the wrong thing and let's face it most of us do say the wrong thing a lot of the time, so maybe it's with good reason. Maybe they need to hear you say I'd rather you said the wrong thing rather than nothing at all.

    When my fiance was killed, people would walk out of the smoking room at work rather than stay in there and have to talk to me but then someone else said they didn't know how I was carrying on and they would want to kill themselves. Which was the better solution - you know I still don't know!!

    My dad gets annoyed that people make no effort to talk to my mum anymore but as she can't speak back it's very difficult to keep up a conversation with her - we manage because we've got used to it over time but other people don't have the nack of talking at her rather than with her. (Mum has FTD rather than AZ which makes the difference in communicating I think).

    On the other hand this week my aunt and uncle made an effort to talk and I wished they'd just shut the hell up. They kept asking dad why he wasn't going to work - why do they think? Who do they think would look after mum? Baffling in an extremely annoying way.

    However, I can't admit to perfection. I'm sure I say the wrong thing all the time - maybe right now....
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #11 Margarita, Feb 11, 2008
    Last edited: Feb 11, 2008



    They do say that you can meet someone in life that can leave a deep Impression in your life , seem that you meet someone that has left you with a deep negative Impression on your thoughts.

    it was just a thought less thing to say to you, how could they know what to do . They not living in your shoes, not happen to them . So though less!



    No your not , try not dough yourself so much, but I know how hard that can be not to .
     

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