1. craiginnis

    craiginnis Registered User

    Jul 10, 2010
    my wife has fairly advanced dementia at 53 and has been abandoned by all but one of her friends and all but very close family members
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It is dreadful and so sad. Not a good reflection on `the milk of human kindness` is it.

    It seems to be par for the course unfortunately. You will read of so many who have been let down by friends and family here on TP.

    It`s enough your wife is so young without her losing those she has relied on for support over the years.

    I hope you will find some support on TP.
  3. small

    small Registered User

    Jul 6, 2010
    Hi Craiginnis'

    How dreadful for both you and your wife. One always hopes that when the chips are down one's family and friends will be there for you.

    Hopefully you will feel support on this site, the members are fantastically supporting and rush in with sympathy and practical advice. When we became aware my husband had dementia I started to feel very alone . My husband didn't want to talk about it and didn't want us to tell anyone. I discovered this site and from the word go I stopped feeling so isolated.

    Luckily my husband is now comfortable to talk about his problems with friends and family and so far they have been very sympathetic.

    Maybe there is a local support group you could join and maybe daycare/drop-in centre for your wife.

    Other members may also join in with advice which may help you.

    Regards jackie
  4. jayne b

    jayne b Registered User

    Apr 10, 2010
    Hi Craig

    Hi Craig
    I felt so sad to read about your wife.I understand how you feel.My husband has picks disease and gradually our friends and even family have distanced themselves from us.I have one friend who rings nearly every other day but phone calls from others are very few and far between and visits non exsistent.I'd love to wave a magic wand for you because I know how hard it is I do hope you are getting some pratical help from some proffesionals.Love Jayne
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    #5 lin1, Nov 13, 2010
    Last edited: Nov 13, 2010
    Welcome to TP

    Its a sad state of affairs when friends and fsmily disappear into the woodwork and so painful too.

    We call them * the invisibles* on TP

    Here you will find lots of understanding people who dont disappear when the going gets tough, quite the opposite in fact!
  6. PostTenebrasLux

    PostTenebrasLux Registered User

    Mar 16, 2010
    London & Oxford
    The Invisibles

    Dear Craig,

    I'm afraid you are walking well trodden ground. Another new member (Ramon (3 initials that now escape me) posted yesterday on the similar lines. "The Invisibles" that Lin1 is referring to is a thread I posted a little while back http://forum.alzheimers.org.uk/showthread.php?t=25732

    My cousin is now 65, having been diagnosed at about the same age. What cruelty this disease. One of the only ways round it lies in educating the masses that it is not contagious. People are afraid of what they don't know or understand.

    Thinking of you and sending you my best wishes,
  7. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    In the past it was the norm to help out
    Neighbours would cook meals for the family,

    Family would be there for each other

    Sadly as we gained assets some lost something very important
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    How tragic that your wife is so young and so sad about her friends. I hope you find friendship and support here on TP. x
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    When friends and family fail to support, it`s as if they find themselves unable to cope with an unequal relationship where they feel they will need to give more than they receive.

    RAMONJKD Registered User

    Nov 7, 2010

    I started a thread a week or so titled 'The Forgotten' as I am in a similar situation with my mum who is 59. We have VERY close family members who certainly don't do anywhwere near as much as they should do, and it infuriates me at times. I have learnt to accept that their actions are not likely to change now. My mum is still the same person to me and deserves the same level of respect as if she was healthy. It is certainly very apparent that people don't know how to act around mum and others in her situation, and I guess society is such that distancing themselves is their way of coping/reacting.

    I may forward links from this website to certain people in my family as it would certainly open their eyes!

    As I have found in just over a week, you will find this website very helpful as a place to vent your frustrations to people that actually care and listen. It has certainly helped me already for which I am very thankful....

    PM me if you ever want to blow off some steam!
  11. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    Hello Craig

    How tragic that your wife has fairly advanced dementia at such a young age, and hard on you. As others have said, it is not uncommon to have friends and family retreat, become 'invisibles'. Sadly I speak from personal experience, and it is very painful and isolating when it is close family. Even through the fog of his dementia my husband has moments of awareness and asks "Where have they gone?" which is difficult to reply to.

    I hope you will find, as has Ramon, that Talking Point is a good place to be where you will find empathy, understanding, information, experience and so much more.

    Loo xx
  12. persiansue

    persiansue Registered User

    Sep 24, 2010
    same boat

    I am so sorry to hear of your wifes condition, I myself have just finished all the test for a anwser to my memory probs and confusion, i am 51 years of age and yes like your wife my so called work friends etc have been nowhere near, it is very hurtfull and also lonely, but as they say you find out who your true friends are when the chips are down, and by golly how true is that.
    She is very lucky to have you as i am myself to have my daughter and husband to rely on.
    I send my love to you bothxxxxxxxxxxx:)
  13. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    As the others say it is very hard when close family and friends seem to desert you.

    I do suggest you contact your local Alzheimers Society as they are likely to run 'cafes' which are a good meeting point for people in your situation. I found them invaluable and worth the effort - we formed some good friendships that way.
  14. CaPattinson

    CaPattinson Registered User

    May 19, 2010
    West Yorks
    Hi Craig

    When I first read about 'the invisibles' I was shocked. It helped me understand how hard it is when friends and family disappear.

    Just wanted to add my support too, I'm always here to listen. XX
  15. sunny

    sunny Registered User

    Sep 1, 2006
    #15 sunny, Nov 15, 2010
    Last edited: Nov 16, 2010
    That's sad, but I would also say, how do you handle that - are you both hiding yourselves away now and is that why people stay away because they think you want to be on your own. I am just wondering if that might be a reason, and so they dont know what to say or do in this situation and I wonder if you telephone them and invite them over if you are able to and if they actually refuse to come over or make excuses or have you not phoned them. Just wondering how you are both handling this situation? Sometimes friends need to be educated on how to handle this situation, perhaps you could help them in some way in this regard. No harm in ringing them and then you really will know where you both stand.

    Some of the most pathetic excuses I have heard in my time are - "well he/she wont know me now will she/he". So be prepared for when you ring your friends, but there again you might be pleasantly surprised and they come over to see you but were awaiting an invite.
  16. Jo1958

    Jo1958 Registered User

    Mar 31, 2010
    Craig, hi
    I am so sorry to hear about the situation you and your wife find yourselves in, as you have heard it is not uncommon.

    We have talked openly about hubby's dementia for a year or so and despite telephoning, visiting, emailing and inviting friends and family to visit, away on holiday and to social events here we have had a very mixed response. The close family seem to want only to know when things have got back to 'normal' and everything is sorted out, there are exceptions though and they are to be treasured. Friends, well we have found that new friends are wonderful and supportive but anyone who knew hubby before has gone, become invisible.

    Deep breath and carry on meeting as many people as you can and be open and welcoming while inviting others on our journey but not being surprised if they leave to alone.

    Take care of yourself and keep posting, this is a wonderfu site for all those of us who need friends who understand, Jo
  17. amarie26

    amarie26 Registered User

    Dec 21, 2010
    I have found the same with my mum that because of her illness she has no social support and people seem to be less bothered by her. Its like her illness makes her some kind of social misfit. I think she has suffered greatly because of this, she has no social stimulation and therefore seems to be detoriating quickly. I know how much company would mean and its heartbreaking knowing that because of something she can not help or do anything about or even understand that people feel the need to neglect her. I understand people are busy with lives but its still my mum that makes the most effort by picking up the phone. It wouldnt hurt to do the same back. :(
  18. WLL

    WLL Registered User

    Dec 28, 2009
    I have read this today, and its my first visit to TP of some time. Because I'm feeling sad again as its Christmas.
    My husband Paul was diagnosed about 18 months ago (he has just turned 49, i'm 44) and his family have deserted us, his brother won't even answer the phone when I ring. I have thought of disguising my number so he does not know its me. But don't really want the outcome. No bad feeling is there as far as I know, so why do my messages go unanswered? I have tried today for the first time in 6 months,and he still doesn't answer.
    His Mum can't cope with the idea and will say she will help but always finds an excuse not to come over or do anything.
    Reading others are going through the same thing helps. But I just feel so sad as its Christmas. We always had a house full over Christmas, family and friends and now I have to virtually bribe his best friend to come over.
    Just at the moment I'm being honest by saying I hate them all.
  19. nicoise

    nicoise Registered User

    Jun 29, 2010
    Hi WLL,

    Your post is so sad - I am so very sorry that your H's family seem unable to get over their reluctance to just reach out to the two of you - I am always amazed that others can't understand that whilst they find it difficult to deal with, they cannot realise that it is immeasurably harder to be the sufferer or the carer....

    Just wanted to say hello, and that there are many of us out here who think of you with empathy, and wish that the story could be different.

    I hope that you have had some support from friends or family in some way that makes up for the lack from his family - and that you have managed to enjoy some parts of today yourselves.

    Best wishes x:)x
  20. carrie99

    carrie99 Registered User

    Apr 26, 2009

    What a distressing post. I was diagnosed at age 52, but all my frends speak to me as they always have done, and far from feeling abandoned, my friends are friends indeed.

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