1. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    bradford yorkshire
    Isnt it noticable how your your friends but mainly relations treat alzheimers as they would a leper. Our sons and grandchildren are visiting less and less in fact we havnt seen one of our grandaughters for at least six months and she only lives 200 yards away.We know that alzheimer sufferers can be quite abrasive but after all they say what many of us think.Why cant they support the career as we have to put up with this dreadfull disease 24/7 and we all know it isnt easy.The latest being my wifes sister who has just anounced she isnt coming anymore the reason being her sister has had a terrible chest cough for about five weeks and my wife has said to her time and time again I hope you arnt going to give me that cough.She could say it at least five times when her sister came for her weekly visit. I used to enjoy a bit of sensible conversation it helped me no end. I am quite annoyed at the way we are being sent into exile.I just had to post this thread this morning and ask if anyone else was being treated like we are.My wife Mollie isnt bothered as she is now out of it and only wants me and her cat and sometimes I think its more needs than wants.You all know what I am talking about
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    It is all too common, I fear.

    Trying to be kind to those who stay away, I imagine that they feel that their visits may cause more problems than help, they may feel totally inadequate in the way they communicate with the person, they may feel frightened, they may not be able to take the endless repeating and the behavioural things.

    Of course, this is all centred on their own feelings really, and I don't believe they want to think more deeply than that, into how the carer feels, and whether they can establish some new relationship with the person who has dementia.

    In my experience, the true friends and relatives stick around, but there are precious few of them. The ones who do stick around, are there less often though, unless we ask.

    I think they can often think they are intruding, especially when they are friends of a spouse whose other half has the dementia. Perhaps we need to invite them in.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Gerrie,

    I don`t think the `fair weather` friends and relatives even begin to appreciate just how much carers need the support of familiar people. They are so conscious of their own feelings of embarrassment towards mental illness and are unable to cope with the changes.

    There is also an element of self preservation. Alzheimers can`t be pacified with a bunch of grapes. It`s difficult to communicate with the sufferer and often very upsetting.

    Perhaps if your family members realized just how much YOU need them, Gerrie, they might visit more often. Maybe one of the more thoughtful members could point them in the right direction, towards you, rather than your wife.

    Take care. It`s so lonely being a carer.

    Love xx
  4. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    Missing family

    The only people Jean and I see is our daughter and sometimes our son. Jean has two sisters and two brothers who live up in the North East. It's years since we saw them, at least ten years since she saw her brothers.

    We have nine grandchildren all adults. All except one live locally and that one we see the most, he's dew back from Afrhanistan in Sep.

    I make sure to get presents for each and everyone of them birthdays and Christmas. Some are so busy that one picked up the Christmas presents of their brother and sister in Feburary!

    The visit of our daughter is the highlight of the week, someone to talk to and she has the good sense to come at the right times.

    It's upsetting to have a visitor come when I'm preparing a meal, feeding or changing Jean's pad. Each moment of each day is accounted for, from just before five in the morning to bedtime.

    To understand a lone carer's roll, one has to do it day in, day out, year in year out.
    Only when you have experienced it, can one understand why there's no time to stop for visitors or go seeking non existing genuine help.

    I'm happy for all our children and keep up to date on them all from our daughter and am there for them if needed. Padraig
  5. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Hi Gerrie,

    You sound like me... almost exactly my experience with friends and relations - actually the relations - like my kids are worst - really do not want to be involved.. And indeed the hard part for the 'spouse' is that it is so good to be normal and have normal conversations...

    Monique's best friends have actually been good... They have made several visits over the years and telephoned... My sister is good too but the children (in their 40s) are far too busy and important to get involved with a sickly parent... Lots of other friends have also just stopped visiting --- I guess its fair enough for them - they get nothing from the visit.

    The problem now is that any conversation between 'normal' people is actually impossible if Monique is awake... She resents not being able to follow the conversation and feels the visitors are intruders so every few minutes makes her feelings clear... People are very understanding but leave early and seldom return - but then that goes with the territory -- I do not mind this with friends and acquaintances - totally fair - but with blood relatives....
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Gerrie, that struck such a chord with me! I was just abouit at breaking point three years ago because of the lack of conversation, John's language skills were the first to go.

    Is it possible for you to arrange something withoput relying on family? I know they sometimes feel that they have enough to cope with with their own families, work , etc. It's hurtful, but I think it's also a generation thing. Whereas we took it for granted that we would take responsibility for our parents in old age, some youngsters feel resentful of that responsibility.

    And I stress some. I obviously exclude from that the many members of TP who are doing a wonderful job of caring for their parents.

    I also think it's harder when the spouse is the carer. It's all too easy to say 'they want to be independent, so we just let them get on with it'. There's also the issue of who makes the decisions. The spouse is obviously in overall control, but sometimes family feel they should have more input.

    Can you arrange to get out on your own for a while? I don't know whether you've already done this, but if not, you should ask SS for a carers assessment, with a view to getting someone in for a few hours while you go out. This was the answer for me three years ago. I have a lady from Crossroads two afternoons a week to let me get out.

    The next step was to find something to do where I would be able to talk to people. My solution was to join U3A (university of the third age) -- it's not really a university, just groups of people who meet, usually in each others' houses, to study something of interest. There's a wide range of subjects covered, including art, music, philosophy, book club, gardening, etc. No qualifications are needed, and it's cheap, as members run the groups. I pay £12 a year, and for that I can attend as many groups as I like (or can get cover for). It's been a life-saver for me.

    You may find other things more your scene -- church groups, golf, bowls, there are many possibilities.

    I've also found that since I've become less introspective, the family are more likely to call, as there are more things to talk about.

    I'm sorry if you've already tried all that. If not, why not give it a go?

  7. sunny

    sunny Registered User

    Sep 1, 2006

    Yes, I quite agree its like being sent into exile. I guess if they don't know about it, they won't get it (perhaps they think they can catch it!). Talk about trying to brush it under the carpet. However, that's why its good to chat to people who are/have been carers because we certainly understand. I get frustrated with other people, but it is difficult I feel I have to "hold my tongue" otherwise I could say some awful things. I have actually found younger people quite sympathetic when they know. The older generation don't want to know unless they are directly affected by it because it is much closer to home and they are scared and embarrassed.
  8. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    bradford yorkshire

    In a strange way it has calmed me down reading your comments and to accept that we are not on our own with this exile thing. I can still leave Mollie for a couple of hours but I dont do it so often and then its only to go for necessary things for our home. The time will come when that will be impossible that will be imprisonment We have always been a devoted couple for 54 years and Mollie wont attach to anyone else but me. Thank you all and keep on with your good work

    Regards Gerrie Ley
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Gerrie,

    It`s why this Forum is so special.

    However isolated we feel, being let down by family and friends, we share the isolation with fellow carers, and somehow it`s not quite as bad.

    Take care

    Love xx
  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hello Gerrie,

    The carers role is indeed a lonely one. When I reflect on my own mums life and how much she did for others and never for any recognition just because it was who she was,then the alzheimers diagnosis, it was like she was cut adrift. Mum has now been in a care home for four weeks and the word has spread, people have come out of the wood work all concerned. I give them her address and say "she'll love to see you, feel free to visit anytime." I wont be holding my breath. It's a hard job but your doing your best. All the best for the future. Taffy.
  11. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Gerrie,

    You've hit on a very common and rarely discussed side affect of Alzheimer's. I often think about this 'stigma' and people's reactions never cease to amaze me.

    I've watched my mums and dads friends dwindle over the last 7 years and, to a certain level mine; although my friends have been lost due to the lack of time I have to keep in contact and less time to fit in social activities - not so much the stigma of alzheimers. Saying that, dad lost most of his friends instantly, they just couldn't handle alzheimers. I was disgusted how one particular community he was involved with isolated dad in his hours of need.

    Mum has COPD as well now (dad has alzheimer's) and I hear all sorts of excuses for people not keeping in touch with both of them. What people don't seem to realise is that even just popping for a visit for 30 minutes once a month, or picking up the phone and catching up with carer just releases a little bit of pressure. OK it is awkward, and we can't help rattling on about are main focus in life but every little helps. I had a call with a good friend many months ago who just out of the blue said "lets talk about something cheerful, your always going on about your mum and dad these days"; I was gob smacked and suddenly realised why so many old friends don't call these days. For me some good friends have stuck around. BUT I can't imagine what it had been like for mum, dad’s main carer for the last 7 years.

    In my opinion, it is a complex issue with the way that society and individuals view dementia and in fact the way society views many other people with disability. I could rattle on about it for hours :)

    HOWEVER, the positive thing is that alzheimers has brought some wonderful people into my life. So many people who care and who work in the care industry have a special aura and I'm sincerely privileged to meet them. There are plenty who hang out on talking point :) and who keep my chin up when times get hard.

    But you are right, that 'stigma' is a serious issue and a very sad side affect.

    Kind Regards
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Craig

    I'm not wanting to disagree with you. It is hard, especially for people in my position,and presumably your mum and dad's. Retired, so not meeting people through work. Old hobbies and social outlets maybe no longer possible. Isolation is pretty inevitable.

    But I can't honestly say I've encountered any stigma, maybe because right from the start I've been open about John's illness, and have been prepared to discuss it with anyone who wanted to know.

    I'm also lucky that John's family are very family-orientated, and after some initial suspicion (was I going to run off with his money?), they've all accepted me. They all ring or visit regularly, and that's great, but as you said, the conversation generally runs along the lines of How's John? How are you coping?

    That's why it was so important for me to find some other outlet, U3A in my case. When I first joined groups, I told everyone about John (and many of them have since met him). I said that I might not always be able to come, I might not have read the book or done the homework, but I'd very much appreciate being a member. When I go to a group, they ask how I am, and how John is, and then the discussion moves on, and that's great. For a couple of hours I forget AD.

    I'm not saying this to brag. It's just what worked for me. It's hugely difficult to go out and join new groups, and the longer you stay in isolation the harder it becomes. But if I hadn't done it I'd have broken down completely, and John would have had to go into care. I was close.

    My brain does not appear to have an 'off' switch, and if I don't give it something to focus on, it goes round in ever-decreasing circles.
  13. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Hazel,

    I agree wholeheatedly with you about joining support groups. I think it was mums downfall and would still recommend that anyone in a similar postion gets out there for support and solice.

    In the end mum just became very isolated and it is something I tried to address time and time again. It was a mistake to try and cope on her own without daily support particular the last year before dad moved into a home. It nearly killed mum looking after dad without enough support.

    As far as stigma goes, it is just my humble experience and I know others have different experiences thankfully. Mum just lost friends that she would not have lost if dad had not had alzheimers. Some people just seemed to want to get on with their life and not get involved unless they had to.

    Positively, I believe things are getting better as far as stigma goes. We may be a long way off a cure or even finding out the exact cause, but I do like the way that that Alzhiemers Society focuses on raising awareness. Awareness and education is half the battle.

    Kindest Regards
  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    With you all the way on that one, Craig. The more people talk about it, the less stigma there will be. It was once the case that no-one mentioned cancer, or at least not above a whisper. Now everyone knows someone who has it, and it's a subject regularly aired in the media.

    Now we need to let people know that Alzheimer's is something that could happen to them!

  15. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I think that is precisely why so many do want to avoid it. The fear of it happening to them or their families.


  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    #16 Margarita, Jun 10, 2007
    Last edited: Jun 10, 2007
    Yes I find now thank-god we are moving away from that , as people always seem a still a bit ignorant about how one can get dementia / AZ .

    I mean as in what the different between AZ and dementia . I must admit from my own experiences that the younger generation age 24 up who I meet seem more open to listen , because they had a grandmother or grandfather who died from AZ or in care home

    My age group 40s , kind of dismiss it that it never happen to them , but do a double take if they have diabetic or heart problems so start listening people over the age 60s seem to be scared and do like like it refereed to as mental illness , so they to if I talk about it as heath they listen more , & a lot of people in that age group know someone that has Just had AZ with know heath issue , and seem to refer to it as they Just gone , not all they

    Now please I am not generalizing the whole population of UK , just the people I came in contact with
  17. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I seem to have met loads of people with dementia before my mother got ill. Could tell numerous case histories.

    But they weren't people I knew well before they got ill, and that makes all the difference.
  18. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    Take just now

    gerri ley,

    Why ponder on a time when you think you'll feel imprisioned? Why not make the best of what you have NOW? I plan by all means for what might be, then put it to the back of my mind.
    In your case I'd plan to take your wife out in a wheelchair as I do. I lift her from the bed by hoist on to the chair and take her everywhere I go. Of course I'd not expect you to lift her into the car as I'm fortunate to be capable to, but you might go for walks and local shopping.

    Tomorrow we visit the dentise for my dental appointment. While we're out and about I'm happy to tell anyone who'll listen about Alzheimer's. We have got to know many strangers. As my American workers use to say 'have a nice day' Padraig.
  19. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    At a loss....

    I don't know what to say about family and friends. There seem to be no words to describe how I feel, without swearing.

    My IN LAWS have been a disappointment from the get-go.
    Over the last few weeks I thought I was going to lose my dear husband, and indeed he had the 'last rights' (Sacrement of the Sick) done x 2 when he was on a ventilator.
    I'm not Catholic, and this was done at MIL request. Husband not been to church in years +.
    Family (brothers and sisters in law), came out of the 'wood work'..
    ALL of a sudden they had time to see him (and I guess me).

    Once they 'knew' or rather had an idea that he was going to survive, all contact stopped.. just like normal then.

    Now we have the added complication of incontinence, we are truely stuck, in that we can no longer visit one of his brothers.
    We can only visit 2 anyway, due to toilets being 'upstairs'.
    Now this 'other brother'... will not allow him to visit, unless I come too.
    The reason being so I can 'change' him as necessary.
    It was not like we went there a lot before.... but now it is going to be IMPOSSIBLE.

    Another brother will not lift off the 'toilet frame' himself when he visits us, as to him it is disgusting !!

    If I am honest I don't really like thier visits they do make ... not any more.
    The conversation is really difficult and pretty vague.
    Despite this, I stay all 'happy and upbeat'... for the visits that 'the in-laws' do come over for.
    Can't and won't let them get me down.

    When ever a visit from anyone is over... my husband says...
    "What was the point of them coming?" ...
    I'm beginning to ask myself the EXACT same question!!

    Why I ask, did they have the time when he was dying, and not now?

    As for 'friends' ... they have drifted off as well, and like family rarely ring... if at all.

    I can't even get family to ring..... it's so sad, it's not for want of asking.
    I don't know how many more years??? / months we have of conversation.
    Do all AZ patiens 'eventually' lose speech?

    Family :( 'next to never' ask me how I am, or how I am coping, and if on the rare occasion that they 'do' ask of me, and I 'begin to tell them', they make an excuse and walk away before I have had time to tell them.:(

    This will always be the case for me and MANY others.
    We all know it should not be like this.

    Not that I am religious in any way, but I hope that if there is a God, he will be watching them all very closely... what goes around... comes around.

    Take Care,

  20. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    I'm looking after my mother on my own with absolutely no help from family. I'm really struggling and I told them so hoping for an offer of help but it just fell on deaf ears. I'm starting to feel resentful towards them carrying on with their own lives without a thought for us.

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