1. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Hello to all.
    Since my mother has become so much confused the visits from her freinds and phone calls etc have virtually ceased. I understand that it must be very hard to try and hold a conversation with someone with Dementia but it just seems very sad.
    Sometimes my mum is quite lucid but other times hard to talk and or understand anyone.
    She has quite a curvature of the spine, Macular Degeneration, wears 2 hearing aids and is along time insulin dependant diabetic.
    How cruel can life be.
    Sorry, feeling rather tired tonight.
    Regards
    snuffyuk
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I sympathise greatly!

    What people not closely involved don't realise is that when you have a conversation with someone who has dementia, it is a bit like improvised acting.

    When actors improvise, they pick a subject and then make up their own script, the basis of which is totally fictitious. The point is that they must believe it is real, no matter where it goes.

    One doesn't really have a conversation in the normal way with a sufferer. But that doesn't mean conversations are meaningless, if you put the right head on. Sometimes they become totally weird [to us], but are accepted as quite normal by the person with dementia.

    In a conversation with someone who does not have dementia, there is give and take. In a conversation with someone with dementia, it is a case of giving.

    But it is a mistake to believe that a meaningless conversation has no meaning, no value. It shows that one is interested enough to spend time with them. They open up. Someone cares, they sense that.

    Her friends may believe they are wasting their time trying to talk to her. Perhaps it would be good to explain that it helps someone who was once their friend. If they feel too uncomfortable, then there is not much you can do. But it may be worth trying.

    My wife has drastic curvature of spine too, since she has been out of my care and in the care of the NHS. The hospital told me her back was always like that but I know that is totally untrue - she has been my wife for 36 years after all! But she is like that now, and it would do no good to rattle their cages...there's always that fear that it will prejudice the care she IS getting.

    Yes, life is cruel.

    Take care of yourself!
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    One of the big shocks to me was the way people vanished when my wife first was diagnosed with AD.
    Two Sons, one two far away to visit reguarly,one quite near but comes very rarely.
    Friends have nearly all vanished,just two couples left ,still keep in touch.
    One son tells people that he calls to see us every day,that's a lie but I suppose it eases his conscience.
    I feel as you do angry,sad,and robbd of our best years.
    Life is a bitch and no mistake
    Day to Day, there is always someone here to talk too

    Norman
     
  4. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    My mums freinds who stil try to visit are in their 80s and do their very best.
    Then there is the church! I do not want to bring religion into this discussion BUT--
    My mother has been a member of the local church for approx 60yrs. She was unable to attend services about 2yrs ago. She receives communion once a month but visiting from other church members is 0.
    Anyway thanks for the replies.
    Take care.
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Church, huh!

    We don't go back in our local church all that far, just 15 years or so, but Jan used to play organ at Evensong every Sunday, and I made readings on a regular basis and produced the Village Magazine - essentially the church magazine.

    Once Jan became ill, only one or two friends from the village that we happened to meet in church ever went so far as to enquire about her.

    Those who have been of most support are not churchgoers - they are agnostic at best.

    Jan is past worrying about religion and at most I consider myself a humanist since attending the funeral of someone who had died of cancer, and who had simply the most appropriate service I have ever attended.

    I'm glad we were not the only ones to have this experience with church - we might have thought it was personal!
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    don't you find apart from the non-visitors already mentioned, people from associations,brotherhoods and a great many past colleagues all vanish.
    Are they afraid of the unknown or just plain selfish and uncaring?
    Take care
    Norman
     
  7. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    A couple of people from our Church still visit Mum, but none from the Church she attended regularly for 30 years until she came to live with us. 3 of my closest supporters have been 2 newish friends who I met since moving here 9 years ago and who visit Mum with me and an old neighbour of Mum. All I would say agnostic. As an only child I don't have the sibling problem but I do have a couple of cousins who come and bring Mum's sister. I still have my faith in the Church though. I once heard a wonderful sermon where the preacher compared life to a piece of knitting or tapestry in that the back of the piece was like life on earth a real mess full of tangles and straggly bits of wool. It was only when the piece was a turned over the full beauty was seen and the revealing the beauty of the work was like a glimpse of what our life would be like in the kingdom of heavan. I've always thought that Mum must be heading for paradise becuase the reverse of her tapestry is tngled indeed! Now, the non believers on the list are going to think I'm an absolute crank! But I have always thought this was a lovely analogy. Sorry to have drifted there a bit,

    Geraldine
     
  8. Jude

    Jude Registered User

    Hi All,

    I've also noticed a big decline in visitors, but not for the same reasons as you all have done.

    My parents' friends are all of a similar age, that is 85+ and they are all dealing with their own personal infirmities and inabilities to drive these days. I tend to take my parents to visit them, which keeps everyone happy.

    My cousins still visit when they can. I'm very fortunate that our family members are good guys and although they live far away, they do try and make the effort to visit several times a year.

    Possibly most people feel that there's no point in visiting because AD sufferers won't remember whether they've been or not. Maybe they also feel embarrassed or frightened to do so - perhaps because it reminds them of their own mortality. I try and remind everyone that, even though my parents won't remember, then I will and the visit is really helpful to me, so that I don't feel too isolated.

    That's why this website is so incredibly useful and why I use it every day. I'd go nuts by myself without anyone to talk to.

    Thanks all, Jude
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    This site is a God send to me,I find it hard to credit but some days I am lonely.
    Conversation with my wife is difficult,very wearing because explanations are needed about past issues that arise.
    Last Saturday we had to have our cat put to sleep,can you imagine trying to explain that one over and over and over.
    I miss the cat because we had simple conversations,she wanted food and I gave it,the cat wanted fuss, and I gave it.
    Jude hit the nail on the head when she said how glad she was to see visitors,some one to talk to,the isolation is a killer.
    Chin up day to day
    Norman
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    For such small creatures, cats really do leave a huge hole when they are not around. 18 months ago I had to have our Blue Abyssinian [called Cary - for Caradoc] put to sleep because he has a huge stomach tumour.

    I still have a Russian Blue [called Nicky - for Nikolai Vronsky] but my long random absences since Jan has gone have meant frequently that when I'm in he is out, and vice versa. We both went a bit feral!

    Pictures of cats are attached!

    It took me about six months after Jan had gone to realise what was the weird pain I was having - for the first time I was incredibly lonely. Sometimes being with other people can exaggerate that. I think it takes time to come to terms with it, and it never truly goes away.

    Norman - use this site whenever you need to. I'm checking it most days.
     

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  11. Jude

    Jude Registered User

    Dear Norman and Brucie,

    I'm here every day and always happy to have a chat. Send me a private message too if you like. It's always nice to get those as well.

    Bruce, your cats are just beautiful. How sad for you to lose one of them.

    I have a cat in Bali. His name is Jeffrey - for God's sake... this was a staff decision [Quote - Jeffrey is a NICE name for a cat isn't it..?] What can you say after that.....?

    I found him at about 4 weeks old, almost dead in a rubbish dump. I had to feed him with an eye dropper for weeks until he became strong. Now, at 3 years old, he's a very large, muscular and vocal creature. Bali cats are Siamese/Burmese cross with a bit of something else thrown in for good measure. Jeffrey is pretty big for a Bali cat, having been fed on eggs and milk as a kitten and gets at least 3 meals a day at the hotel and is spoilt rotten by staff and guests alike. Must be cat heaven for a Balinese moggy.

    We haven't got any pets here in England which is a great shame. I'd like to have a cat but I'm concerned that the oldies may trip over it - cats have a wonderful knack of winding themselves around one's legs. Also, there probably isn't a lot of time left really. I did try for a budgie this year, but Dad wasn't keen for some reason. Still, I do miss having pets around the house.
    So, I have to make do with half a dozen squirrels, a couple of deer and the 35+ rabbits that invade the garden every evening.
    It's better than nothing, but you can't quite have the same sort of stimulating conversation with a squirrel for some reason.....


    Jude
     

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