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Friends and family?

Discussion in 'I care for a person with dementia' started by Reds, Feb 22, 2015.

  1. Reds

    Reds Registered User

    Sep 5, 2011
    541
    Hertfordshire
    Hi all!

    Can't understand why people won't take the time for me to talk about my husband's Alzheimer's. It would do me the world of good sometimes to discuss the matter in a practical, interesting and passionate way. I don't see why I can't express myself when I want to as its my life too! I do my best to vary my husband's day but no one has been bothered with us this weekend.

    Reds
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,941
    Female
    Dundee
    I can understand how you feel Reds. I have good friends and we do often talk about Bill and his dementia. Weekends we are mostly on our own though. I've got used to it now but sometimes the days are long!

    Take care. x
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,745
    Female
    London
    I think people are afraid. They don't know much about dementia or don't know what to say. They might fear they will say the wrong thing. They keep away because it's easier. We are sometimes not helping ourselves by saying everything's fine when asked, as we don't want to appear to moan too much. I can talk about incontinence here but I am not sure my friends and family would appreciate the finer details.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,941
    Female
    Dundee
    Absolutely!!!
     
  5. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    I find it helps to talk to people on hear as they understand what I Am going through but when u talk to someone that has doesn't live with it or understand it's hard.


    Stuart
     
  6. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Hi, People unfortunately don't understand, some are scared by the word Dementia or Alzheimer's, some simply don't know how to help or what to say, it's sad that friends and family stay away just when you need help and support the most, even just a friendly face to talk to makes so much difference x sorry you have experienced this, I would think about the one person you trust the most out these so called friends / family and tell them how you feel, no big confrontation but say you have had a difficult weekend and disappointed no one came to see you, it might make them think!
     
  7. stu100

    stu100 Registered User

    Feb 4, 2015
    70
    Birmingham
    I have tried to get my family to read some things I have read when my nan was diagnosed 2 years ago. But some times I think they don't want to know what's going to happen in the later stages I have read and watched loads of videos so I can try to understand and help my nan the best I can.


    Stuart
     
  8. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    116
    Manchester
    I understand how you feel sometimes i crave sensible conversation with another adult. Somebody who listes to me and cares about what im saying. Sometimes its like living on your own but your not alone.

    We do get out a lot i find my company in bingo because people talk to us there.
     
  9. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    In the north we say "a friend in need is ... a pain in the a**e" and it looks like you've found it to be true.
    I get asked how my wife is all the time, people rarely ask how I am and when they do I just take it as one of those rhetorical questions that people ask and don't expect a real answer.
    One of the children is coming to visit tomorrow (it's my wife's birthday) almost certainly he'll ask how it's going, my answer will be "you just have to get on with it" or something similar, how will it help him to know what it's really like the grinding, groundhog day tedium of it all. A problem share is 2 depressed people instead of one, why would I share it with him. It may just be me that thinks this way though.
    K
     
  10. Jess26

    Jess26 Registered User

    Jan 5, 2011
    970
    Kent
    Kevinl it may not help him to know but it will help you to tell him. Also if I found out that my dad had been struggling, I would be upset that he hadn't confided in me. Hypothetical as dad died 20+ years before mum.

    Just something to think about.
     
  11. Reds

    Reds Registered User

    Sep 5, 2011
    541
    Hertfordshire
    Thanks for replies.

    I know I would have wanted to have helped my parents if they had had Alzheimer's or whatever illness. I couldn't have left them to worry about it all alone. I get some support but I think today's society can be so hectic and what with new technology people don't take time to really talk things through together.

    Reds
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,096
    Male
    Bristol
    #12 nae sporran, Feb 23, 2015
    Last edited: Feb 23, 2015
    Family? They don't care, just leave you to it and get bossy or stroppy when I talk about Ch or our problems. As for friends? they disappeared around the day of the stroke that started the dementia.
     
  13. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    NaSporran...you hit the nail on the head. My family don't give a stuff either, as for friends, they are disappearing thick and fast :(


    Sent from my iPhone using Talking Point
     
  14. Reds

    Reds Registered User

    Sep 5, 2011
    541
    Hertfordshire
    I think people just don't like hearing other peoples problems in general because they have their own problems! Understandable really but I think if everyone was willing and gave the time to talking through matters properly we would all feel much more supported during difficult times!

    Sympathy doesn't change anything but think it can make people feel a bit better and at least recognised that they are just as important as anyone regardless of any difficulties within the family such as someone having Alzheimer's! I know that if my husband were to go into hospital for any reason there would be enormous worry generally and people would visit him but otherwise they think it becomes a usual thing and don't realise we might need general support even if only a chat about it!

    Reds
     
  15. Rosie2

    Rosie2 Registered User

    May 17, 2008
    47
    Same problem. Disappearing friends. Sons sitting back and letting me deal with everything alone. Even the one who is substitute attorney.
     
  16. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    It's a sad and lonely position to be in isn't it. Once my mum is gone then I know i will never have this issue again. Lost my dad to cancer 8 years ago, not married, no kids, no longer speak to my brother or his pack of Jeremy Kylers...they rinsed my mother then dumped her, no calls, visits, not even Christmas/birthday cards! But I won't be carrying the guilt my brother will and I will do nothing to reassure him should he seek forgiveness. I'm tired and almost done with it. I feel my life has been stolen. It feels like a prison sentence with no sign of release


    Sent from my iPhone using Talking Point
     
  17. Reds

    Reds Registered User

    Sep 5, 2011
    541
    Hertfordshire
    I wonder if people see dementia as a 'fault' more than an illness. Think some are afraid of it because they don't learn about it and so can't handle it. I do get some good support but at times its not a priority but know it would be if it was cancer for example. I also think people think its just something to get used but seem to withdraw away rather than make the most of what is still good about the person with the 'confusing' illness.

    The hardest part is that it is so sad!

    Reds
     
  18. Kate and jack

    Kate and jack Registered User

    I understand totally ,this topic is right up my street
    And if people would just go back to basics and what I mean by that is ,asking after someone and how are you !!
    This is all I crave ,simple as that
    Ppl don't ask how you are because they can't cope with the response of how your situation may be
    The way I look on it is ,if ppl acknowledge then they have to take on responsibility and to an outsider looking in that's too big a commitment
    I'm in turmoil with my mums family they don't offer any help ,why ? Because they don't want to take any responsibility it's easy if we bury our heads then we don't need to worry about anything
    These sort of people make my blood boil ,and I'm sure by the sound of other posts ppl are experiencing this too
    KARMA ......wait and see !
    What goes around comes around
    I solely understand each and every one of your posts and wanted to say hold your heads high because we are all doing a grand job and looking after our loved ones the way we feel fit ,God bless you all xxxxxxx
     
  19. Adcat

    Adcat Registered User

    Jun 15, 2014
    289
    London
    This post and thread totally resonates with me. I cope by pretending I have no relations! I'm quite ashamed of them. When my dad was well, he would give you the shirt off his back. He helped each and everyone. I can barely cope with my two eldest siblings who have effectively left me to get on with it. I feel sorry for them rather than angrey though. You don't escape this life unscathed by emotions and I don't want any regrets.
     
  20. Reds

    Reds Registered User

    Sep 5, 2011
    541
    Hertfordshire
    Thanks, Kate and Jack

    I hate to say it but yes I have thought too that what comes round! I feel others could learn from my situation and it would be handy info for when they have illness as bad as dementia etc in their families but I imagine its just not interesting enough for them and they have their problems too.

    Glad I started this thread because I can't understand why people don't standby one another more. Like you said if only they said something like 'how r u managing' or 'is there anything we can help you with' or 'how is your husband today'. It really doesn't take up too much time or cost anything. The occasional 'would you like a lift to your appointment' would help even if not necessary or 'happy to visit or go out somewhere for support'.

    Also how about us being told what help is available rather than have to search for ourselves!

    Reds
     

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