1. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hello,my question is one, more of curiosity. At our local support group(were we have a great gathering) I was quite surprised to here, after dementia diagnose, that family stopped calling, neighbours didn't drop by anymore and many close friends fell by the way.I was wondering how many other carers experienced similiar.My own experience with my 83 year old mum was very similiar`even though at her age many friends have passed away, but a few that were very close to mum dropped off (very sad) not even a odd phone call.Mum's brothers never visit and are more than capable, they do phone 3 or 4 times a year.Neighbours never stop by, but having said that, have offered their help in a crisis and I feel confident that they are sincere with that offer.My brother lives interstate and calls are far and few between as are visits. My sister is in constant contact by phone and email only, as extremely poor health and distance dictates that.Gee when I reflect on mum's life, she was truely every bit a true friend and a wonderful hands on sister, I am hoping that this is not the norm.Thanks again for your time. Taffy
     
  2. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Sadly it seems to be very common, and was certainly my experience. Perhaps older people have a particular fear of such an illnesss because mental health problems have always had a stigma and, perhaps, because they fear that with the onset of age they themselves will develop dementia? Trying to be generous here as I found it very hurtful.
    Blue sea
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hi Taffy,

    It was the norm for my mother. She was a `social butterfly` and ended up alone.

    She had such a wide circle of friends and associates, people she and my father went on holidays with, entertained at home, went out with to functions etc. but slowly and surely they all drifted away.

    By the time she was in the NH, she had 2 visitors, me and my husband.

    With my husband, it`s different, for he just had a few close friends. They have either died or moved away.

    I don`t really blame the friends. I think one of the first skills to go, with dementia, are social skills and it`s so difficult to maintain the same or even a similar relationship with a friend.

    Family is different. Family members who lose interest in a relative with dementia are thoughtless in the extreme.

    But you can`t tell people how to behave. We can only be responsible for behaviour of our own.
     
  4. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    People will often trot out the old favourite excuse 'I don't like to see him/her like that. I want to remember them as they were!' Does this therefore mean that the people who choose to maintain contact ENJOY seeing the deterioration in their loved one! I think not!

    'love is not love that alters when it alteration finds'

    http://www.albionmich.com/valentine.html
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Yes, people do shy away from sufferers.

    My parents had so many friends in the village, at Dad's funeral 2 years ago there were about 250 mourners.

    Mum and Dad went everywhere together, so everyone knew them both equally.

    Mum went into a care home as soon as Dad had his stroke.........he died 13 days later, yet only a dozen or so relatives visited in the first year and since then it is just my sister, Mum's brother and myself who visit frequently. Some of the grandchildren, all now adults visit fairly often.

    What really irritates me is that lots of people ask after Mum, but use the excuse "she won't know who I am" as their reason for not visiting her.

    My answer is always the same "Mum doesn't know who I am either, but it doesn't stop me going!"

    Yes, I know she is my Mum and that is a different matter, but if friends and family don't visit it makes no difference to Mum, but it would mean so much to us, to know she is not forgotten.

    Kathleen
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #6 Margarita, Apr 22, 2007
    Last edited: Apr 22, 2007
    My mother never socialise a lot , but I do remember people always coming around to her house , or mum talking to them outside her front garden, then when she became ill , I would see her friends in the street they always ask about mum one couple did pop in few years ago .

    I always ask them to pop around told them are new address ,as we have move back into the area mum use to live in , but they don’t come around even thought they have a conversation with me about mum when I see then around , one lady has a husband in a care home with AZ , I suppose that she don’t want to be reminded of it , other see it I feel that they have they own issue to deal with that they don’t want to take on board someone ales , not that I would say just visiting popping in would course that , but people are funny
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Brenda, thank you for that very apt quote. It's a beautiful sonnet, and could have been written for people with Alzheimer's. Sadly, we live with 'alteration'.

    This not wanting to visit is all too common, and I think it's the same as people avoiding you after a bereavement.

    Says a lot about them, I think -- concerned only with their own feelings, not anyone else's.:(
     
  8. leigh

    leigh Registered User

    Oct 12, 2006
    11
    Essex
    I know what you mean

    My mother is one of eight children, her being the third eldest. Although her family are scattered over the south of England, the two most local sisters do visit her as often as they did before diagnoses, being a couple of times a month.

    Annoyingly though, one of them has changed a lot towards her since she had her formal diagnoses earlier this year. Before we knew for sure it was AZ she was full of support but since the diagnoses she has been different. Rather hurtfully suggesting that mum no longer goes along to family get togethers (as no-one will have the time to look after her). I think she assumes once you have AZ you become someone who wanders off and forgets your own name. It annoys me that people can be so ignorant. If my sister was diagnosed with AZ or anything else for that matter I would immediately read up about what we are looking at and find ways to help her as much as I could.

    I think its only to be expected that the circle of friends for an AZ sufferer will shrink in time, people have their own lives to get on with at the end of the day and the bit that annoys me most is when people have that attitude "it doesn't matter because she won't remember anyway".

    Ok rant over. I can only control my own behaviour and be the best daughter I can be for her.
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #9 Margarita, Apr 22, 2007
    Last edited: Apr 22, 2007
    Me also

    ( This was last year , so mum was more alert ) what I do not like is when we was at AZ daycentre garden party mum sitting next to me and one person that was in a band that was playing music that I new, came over as we where all taking in a group , him standing they in front of my mother talking and then said oh she won’t understand anyway referring to my mother , yes I do what he on about , my mother said this in Spanish I thought how rude and ignorant and his elderly himself , so I said to her take no notice in Spanish , because knowing my mother she would of started an argument and about it , because to her they is nothing wrong with her , even thought that not the point .
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    In that situation Maggie, I would have translated on her behalf. If you let people get away with it they'll never learn (although I do understand the desire to avoid arguments).
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #11 Margarita, Apr 22, 2007
    Last edited: Apr 22, 2007
    Yes your right , just that I was just taken back at that remark , and glass of wine chilling me , my mother was good at cutting people dead with a remark , when she did not like what they said , can’t blame her now I am older , so I just learn to be more diplomatic , but I am learning more on people attitude on dementia and what to say the next time
     
  12. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Just to show that all is not "doom and gloom" I must tell you about an old friend of my parents who lives in Scotland. He knew M&D very well over thirty years ago and has since kept in touch on a "couple of times a year" basis. Since M&D went into the Home he has rung regularly (not cheap from Scotland to Australia!!) and now Mum is widowed, he rings every month!!

    We are SO grateful to this wonderful man for his caring and compassion! If only all our Aussie friends and family were so good! Nell
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    We Scots are soooooooooo nice!:D
     
  14. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    My mother had been cutting herself off socially for some time before we realised it was dementia. Once I knew there was much more social contact, but then that all disappeared after the funeral.

    Strangely the only friends of my mother's who seem to want to keep in touch with me after her death are in New Zealand.

    I don't know how much my brother would bother if I were seriously ill as I remember he didn't visit me in hospital before, I made excuses for him to colleagues saying it's a long way, they're busy, etc. but they (colleagues) said they'd travel much further than that to visit a relation in hospital. He's never been an in-patient in hospital himself and that does make a huge difference to attitudes.

    Lila
     
  15. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    This also happend with my mum, she had alzhiemers for 8 years passing at the age of 62 last year, not one of her friends came to see her in the 8 years, friends thats lived in the same street as well. Iam not sure if its they wont know what to say or they dont know how someone with alzhiemers will act towards them. I dont know but one thing i am sure of if any one of my close friends was diagnozed with any kind of terminal illness i would be the first one there.

    kathyx
     
  16. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Firstly I would like to thankyou all for your replies. I viewed the replies yesterday morning and it was my intent to acknowledge them but dad took sick suddenly and ended up in the emergency department. All seems to be ok there,turns out that , medication the GP stopped two weeks ago seems to have caused the problem. Dad will be kept in hospital a day or so more just so the DR's are certain.Sad to read that many have experienced lack of family support,I agree with all your thoughts and I also have the theory that family just dont want to be placed in a position where they maybe asked for hands on help.In my post I forgot to mention that my daughter helps out were ever possible, she has to travel four hours a day for work, but always see's mum each week, she thinks her nan is a classic.Thanks again for your replies. Taffy.
     
  17. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Mum Still enjoys company and a laugh

    Mum might be 82 and suffers with this terrible ILLNESS, but hopefully she is a long way off recognising family members. Quality of life is about NOW not YESTERDAY or TOMORROW. So what if she can't remember who visited or when.
    She still enjoys the company and can still enjoy chatting and having a laugh and joke, she still has a great sense of homour.
    If it were any other ILLNESS i'm sure people would react differently, thank goodness we are not all the same.
    bye for now
    Janetruth
     
  18. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Thankyou all for your replies I am not sure what I did wrong but I posted a reply to acknowledge your replies and noticed that it didn't register,I am also new to computers so heavens knows what I did wrong.Sad to read that many have experienced lack of support from family. I agree with all your thoughts and wonder that maybe family don't want to be placed in a position were they might be asked for hands on help. Regards Taffy.
     

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