1. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    #1 tryingmybest, Aug 13, 2015
    Last edited: Aug 13, 2015
    Both sad and furious last night as I spoke to my friend late last night once Mum and fiance were in bed. So needed some support and felt really alone to be told I wasn't helping the situation with Mum and was doing too much for her because "with the correct training people with dementia can learn to do more for themselves and can stave off their symptoms"..........really?? Why do well meaning people think they know so much more than those of us who are caring for someone with this disease at home 24/7? Landed up feeling even more alone and drove the car down an isolated track at midnight and cried my heart out listening to the radio for an hour. I crept back in the door, nobody had missed me, and had a troubled restless few hours before getting up to face another day!!
  2. Margaret79

    Margaret79 Registered User

    These people who think they know more than us 24/7 carers really push my buttons :mad::mad::mad: Who do they think they are? I have one who I am now just about being civil to after a big bust up over caring for my MIL.

    You are doing a fantastic job, what you need is a pat on the back not being told how to do it. Consider yourself patted on the back by me. Supportive friends are difficult to come by in our situations but luckily for us we've found TP and there's always someone here to "talk" to.

    Hope you have a good day, love & hugs coming your way xxxx
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Well I'm going to give you a big hug & tell you that you're doing brilliantly.
    Come & talk to us. We all understand.
  4. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    Thank you Margaret79 for your kind words. Sorry you've had an upset too. Thank you Cat29 too. Love and hugs back to you. Xx
  5. sonia owen

    sonia owen Registered User

    Keep doing what you are doing. They often say the best people who know the person they care for is the carer. They should be asking you what you think is best for your mum. Hope you have a much better day Hugs Sonia xxx
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    Feel for you, you're doing a great job. Should tell your friend to get on with it and teach mum something! That'll larn her!
  7. marionq

    marionq Registered User

    Apr 24, 2013
    This is not a friend. You have learned something useful. A friend would never undermine you in something so important. I have no difficulty in walking away from people like that. Of course that means you end up with a very small circle of friends but so be it. Better to go it alone than put up with ill informed nonsense.
  8. balloo

    balloo Registered User

    Sep 21, 2013

    Had the same advice from OT when I was told to teach MIL who has VD to use phone to call my husband in an emergency. I just laught . MIL can not even rember how to wash her hads caught her using tooth brush and tooth paste to do it yesterday. I am sure you are doing a good job. Ignore people who are not living with dementia day in day out how do they know.
  9. Bod

    Bod Registered User

    Aug 30, 2013
    #9 Bod, Aug 13, 2015
    Last edited: Aug 13, 2015
    Stand to one side.
    Ask the person concerned, to come and show you, how to train a dementia suffer.
    Watch them run over the furthest horizon.

    The reason I asked you to stand to one side, was so you were not hurt in their departure.

    There is a case, for getting the sufferer to fall in line with your routine (IF at all possible) for your convenience. Indeed when taking the stress of doing it all for themselves, is lifted off a sufferer, then an "improvement" is often seen. But the dementia is still there.

    In my experience, you only pick the battles, that have to be won. Safety, both personal and food.
    The rest...slowly slowly, catchee monkey...get things around to ways, you can cope with.
    If that means being crafty, underhand, or even little white lies (great big whoppers) then so be it!
    Its in their interests that you are able to cope in your way.

  10. Kjn

    Kjn Registered User

    Jul 27, 2013
    Oh dear, unfortunately these 'experts' seem to read a sentence somewhere , make up their idea of it and then spout it out...with no actual knowledge of dealing with dementia on a daily basis.
    ((Hugs))) x
  11. Stresshead

    Stresshead Registered User

    Sep 13, 2014
    I understand what you're saying Tryingmybest but just take everyones advice and ignore and walk away. If you've never lived with Dementia then you don't have a clue what it's like or what you're talking about !! I bet you're doing a brilliant job in what is probobly very difficult circumstances.

    Dementia has sadly taught me a massive and very upsetting lesson about my so called 'friends' as they have been nowhere to be seen and offered no emotional or moral support. I know that when this chapter of my life closes I will come out of it a very different person than I was before.

    One thing that you can rely on though is the fantastic support that you will get on here.

    Sending love, hugs and strength. xx
  12. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Oh, Lord, I'm surprised you didn't thump her! These people really do make my blood boil! I do partly know how you feel - I was terribly upset last year by an aunt in Canada - who has visited once in a blue moon and knows sweet FA about it - who told me it was my mother's own fault she had got dementia - if she had stayed more mentally and physically active like the sprightly old 90 year olds at her church - she prides herself on being so very Christian - she would not have succumbed.
    I sent a very tart email back and don't care if I never hear from the judgemental old bag ever again. But then I so rarely saw her anyway.

    I hope when you are feeling a bit better you will find a way to make your friend understand - the trouble is that people are fed so much stuff in the media about this and that staving off dementia, and I dare say a lot of it is written by people who don't have a clue, either, but who just think it will do to fill up newspaper space nicely, and of course it's what people want to believe.

    I did point out to my aunt that plenty of people who have always been mentally and physically active still get it, including some very famous ones, but she is the sort of person who always knows everything better than anyone else, and prides herself on 'speaking her mind'.

    I do hope you will be feeling better soon. xx
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #13 Shedrech, Aug 13, 2015
    Last edited: Aug 13, 2015
    I agree with everything so far said - and from your posts Tryingmybest we all know that you are doing the best in this trying situation we all find ourselves.

    I do feel that comments such as your friends are fuelled by reports about how keeping the brain active, eating healthily, being well educated, going for a 30 min walk each day, learning a new skill ........ the list is seemingly endless 'lower the risk' of an individual having AZ, a heart attack etc etc etc. This I think translates for some less thinking and less knowledgeable into 'will stave off' or even 'will cure'. So for those who haven't come across the realities expressed on TP everyday it's a great 'get out clause' to fend off having to really consider and engage with what's going on - even when 'faced' with it at one remove ie having a friend or relative who is now a carer. And let's face it, how many of us would prefer never to have had to know what we now know. But there is a high level of ignorance out there - both just lack of knowledge and head in the sand obliviousness.
    It bugs me that it leads to those with dementia almost being seen to 'deserve' it in some way because clearly they can't have looked after themselves and must be really stupid .... when we all realise dementia doesn't discriminate, it will latch onto anyone.
    Sorry - a hijack and a rant!

    And of course it's wise to live healthily in every way - but that doesn't mean any risk is reduced to zero; I don't know anyone who has never had a cold.

    PS Crossed with Witzends post - who put it far better than I did.
  14. Lilac Blossom

    Lilac Blossom Registered User

    Oct 6, 2014
    Tryingmybest Unfortunately this happens far too often. I have experienced it a lot and it is so upsetting probably because it happens at a time when you are feeling low and think you have a friend who is "there for you". Instead of being supportive, they make suggestions which imply criticism that you are not doing enough and I think in this way they feel superior in having thought of something which would never have occurred to you!

    You are doing your best in circumstances none of us would choose l

    Pat on the back from me too
    Lilac x
  15. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I can imagine how you felt TMB. You are going through so much at the moment and all you needed was some kind of helpful support and understanding. It's what most of us need at such times.
    Your friend failed you. Does she live locally? l
    If so, perhaps she'd like to sit with your mother for a few hours whilst you and your fiance have some time out for yourselves.

    "Staving off symptoms" suggests that the symptoms are not yet present.
    Sadly, the first we realise they exist is usually when these symptoms show themselves by which time, it is too late - even supposing they could ever have been 'staved off'!
    The trouble is that these reports are produced for the well, not for those already afflicted by dementia, and, as so many of us know, they are not always accurate either. I wish sometimes that they'd wait for concrete evidence before these 'facts' are published rather than the trickle of information that is immediately picked up by the media, understandable though that is with it being so much a matter of concern today.

    You're doing well TMB and don't let one friend's lack of understanding detract from this. x
  16. jan.s

    jan.s Registered User

    Sep 20, 2011
    #16 jan.s, Aug 13, 2015
    Last edited: Aug 13, 2015
    Oh dear TMB, you need a friend like that at the moment :mad:

    Theories are wonderful, but in practice we all know things like that don't work. Some people just don't understand the reality of dementia, especially when you've worked hard all day with Mum, you don't need to be told you're doing it all wrong.

    I am sorry you were so upset, but I do understand that; when we reach an all time low, we need support and help, not criticism.

    WE all know from your posts that your care for Mum is brilliant, and only you know her capabilities. I am also a believer that what works for you and Mum is good; to me the most important aspect is that Mum is happy and contented, which she clearly is. To place unrealistic expectations on her could cause her stress and make a happy situation, and cause her to become difficult.

    Sending hugs and loads of encouragement. Wipe your tears and know that your friend has little understanding of your situation, and needs to learn to speak with empathy.

    Jan x

    PS I remember being told by a member of my family to give Roger coconut oil and that would cure him! If only :confused:
  17. nicoise

    nicoise Registered User

    Jun 29, 2010
    Hmmm - perhaps if Terry Pratchett had done a bit more reading and writing he could have stopped his PCA.....

    hang on though, he was one of the biggest world-wide selling authors ever, wasn't he?

    So just maybe dementia just strikes anyone, whoever they might be and whatever their life story
  18. submarine

    submarine Registered User

    Apr 5, 2013
    I suppose she is entitled to her opinion.
    BUT she is saying a lot more about her than about you.

    It is so upsetting and undermining to discover a 'friend' who feels compelled to criticise. If it is someone with whom you d like to continue a friendship with, it may be worth talking about it with her. But it could also be an opportunity to let her go.

    When someone I knew very little offered to come and sit with my mother for a few hours so I could sleep or go shopping or something I just about burst into tears of gratitude. I now count her as a true friend.

    A few times I have tried to put into words the bottomless pit of need my now bedridden mother presents to me. My sense of despair and exhaustion. Advice such as ' stop being such a martyr and put her in a home ' and ' explain it all to her then write instructions down and leave them where she can see them ' are now considered given by those who 'mean well but whose opinions are irrelevant '.

    I know I probably sound a little cynical but it helps me protect myself .

    It s so tough. Thank goodness for this forum.

    You are doing an amazing and unbelievably difficult job. Sending you virtual hugs and support and hope you are feeling better today.


    Sent from my iPad using Talking Point
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, Ive come across people like that too. Its always the ones who have read something (probably in the Daily Mail....:rolleyes:), but have no experience that say really stupid things like that.
    Yes, we know you are looking after your mum well so have a (((hugs))) from me, which is probably what you wanted off your "friend".
  20. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi TMB ,

    I'm sorry to hear that you have a friend like this. People often mean well, but have no clue what they are talking about and don't have the sense to keep their mouths shut. For some reason some people always feel that they HAVE to give people advice. My parents' next door neighbour is exactly like that. He is very well intentioned, but sometimes I have to grit my teeth in reaction to some of the things he suggests for my parents. He had the bright idea of us taking dad off all his medications because he was becoming "too reliant" on them. My dad has COPD, asthma and heart problems as well as dementia, and those drugs keep him alive. So I said to him, "Look, it's not like he's taking a couple of ****ing aspirins - if he doesn't take those drugs HE WILL DIE". That was the end of THAT conversation. :D

    Off topic, but I get the same kind of unsolicited advice from friends about my depression. I suffer from major clinical depression and have to take a lot of pills. Someone helpfully told me the other week that my depression was my own fault because I had "allowed" myself to get affected by it. I could have kept my cool and said to him that depression is an illness just the same as something like cancer, but you wouldn't tell someone the cancer was their fault because they had allowed themselves to get it. Instead I gave him a more direct response of "**** off and don't come back". :D I no longer give a damn about saying things like that to people. They need to be told.

    Sometimes you have to identify the asshats and kick them out of your life for your own sanity.


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