1. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    :mad:how on earth do you get family members to understand what a person with alzeimers and vascular dementia is going through when they appear to be totally disintrested !!!!
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    You can't.

    It's most likely because they choose not to know so it doesn't put them under any obligation. It by far the easiest and most selfish way out and I'm afraid you'll find many posts referring to the 'invisibles' here on TP
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP Julie :)

    I'm sorry to say you cannot force people to see the reality of the situation.
    I found that spending a big chunk of time with my dad opened my sister's eyes a bit.
  4. JohnBG

    JohnBG Registered User

    Apr 20, 2016
    Lancashire UK
    #4 JohnBG, May 21, 2016
    Last edited: May 21, 2016

    Many people resist change on the basis of fear of the unknown, the best policy is to change what you can then ignore the rest. On others finding a voice does it then give them an opinion without responsibility.

    A change of thought is needed to change opinion then behaviour,hard at the best of times.

  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #5 Shedrech, May 21, 2016
    Last edited: May 21, 2016
    Hi julie
    welcome to TP - a really good place to vent the frustration evident in your title

    sadly I believe Grannie G is correct - those who don't want to know won't whatever you do
    it's such a shame as it reduces the group of people the carer can talk to openly and isolates the person with dementia - and can cause friction when the lack of understanding leads to those who don't know 'knowing better' than those who are facing the reality
    if you have the energy, maybe pass along some leaflets, mention Dementia Friends, guide them to some videos on line eg Teepa Snow, tell them about the AS website - get them to care for a few hours?

    do keep posting here to get things off your chest :)

    PS just proves the members here understand you - 2 responses whilst I was typing mine
  6. crybabe

    crybabe Registered User

    Nov 28, 2012
    Hi Julie,ive been down that road with my invisibles,my dad was diagnosed 6/7 years ago.They kept telling me old age but never really saw him when they did he went into hostess mode for the few hours of there visits(im his full time carer) So went to doctors for something to prove his diagnosis to them,she told me that no matter what she gave me it would make no difference. She talked to me about me thinking differently and to just except their thinking otherwise it would affect me .Thats what I now do and have come to terms with this and I feel so much calmer about it all. Goodluck xx
  7. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    hi thanks ,i only been a carer for 6 months but it all happened so quickly ,i work from home but am loosing my business ,not seeing my grandchildren and yet i still feel so selfish and guity
  8. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    im hoping a bottle of cherry lambrini will help ha ha
  9. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    hi i have posted vidoes of teepa snow as i found it very powerful and added them to groups but it doesn't seemed to have made a difference as yet ,as for getting them to care for a couple of hours still working on it !!!
  10. Mollygoose

    Mollygoose Registered User

    Dec 19, 2014

    Teepa snow vidios are so very good I would say to everyone just watch and learn ! She is brilliant
  11. Cathy62

    Cathy62 Registered User

    Oct 10, 2015
    My brother wouldn't believe mum had a problem. I realised just how far removed he was when he said "There's nothing wrong with mums memory ... She can remember the war as if it were yesterday " ... Yep, she can, but does she know what she had for breakfast!! It's not fair that any of us should have to cope alone. My brother thankfully, after 2 years is now on board so Julie , there is hope. Big hugs to you.
  12. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    Hi Julie,

    Like you, I am caring for a PWD (person with dementia) and am faced with the indifference, or (what feels like) the contempt, of relatives who choose not to get too involved in the day-to-day stuff, but feel entirely free to meddle in the matters that interest them...you guessed it, ££££!!!! :rolleyes::mad:

    I have come to the conclusion that caring for someone with dementia can hit us in several different ways. Firstly, there is the gradual loss of skills of the person we care for, the distress that causes them (and us), and the burdens that puts on us with regards to day-to-day care.

    Secondly, there is the impact on the carer's own life - health, jobs, children, spouses, friends, hobbies...all quite likely having to take a back seat.

    Then, and this is the killer for me, the reaction of other close family members, who in my experience have simply CHOSEN not to get involved in the important stuff to do with day-to-day caring, yet they feel justified in expressing their opinions to and about those who do!!! I have one particularly unpleasant sister-in-law who has openly accused me of over-caring. My attitude is that I would far rather be accused of that than under-caring, and beyond that I take no notice of her and avoid contact with her as much as possible. I have come to realise that they are entrenched in their point of view, and there is nothing I can do to change their minds.

    Thankfully, I have a loving and supportive husband, and other family members who are very appreciative. I also have a couple of good friends whom I can have a good moan to and who bolster me up! I am hugely grateful for these blessings!

    Have a good browse around the threads on this site, to see how people cope with the 'invisibles', or the 'occasionals'. It's a very common theme! There are no easy answers though, as everyone's situation will be different. Hopefully, as you are fairly early on in your journey, your relatives will come to understand the situation in their own way and time, though it may take some time yet. Meanwhile, hard as it may be, stay pleasant and keep the lines of communication open with them. Be honest with them, but keep the discussion neutral if you can (by which I mean, avoid accusing language - you know what I mean!). I hope they respond positively to you, and good luck to you. xx
  13. eth

    eth Registered User

    May 17, 2016
    The invisibles

    I've just learnt this good name for the ones who don't want to know. I remember how angry I felt when I was first needing help and support. sadly some of my family and friends (?) didn't get any better but - message of hope - some just took time to get over their own shock and grief and did eventually shape up.

    Do try though to go to any groups or outings you can. You'll get your best support from people in your situation. Eth
  14. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    thank you for taking to time to respond to my cry for help ,in reading your post i feel you totally understand where i am with it all,i expect from their point of view i too do over-care but in the same token have saved her from many falls ,embaressments of all kinds ,stresses , malnutrition,missed appointments ,you know the list is endless and i am happy to do that ,but i can't take being told how to care when they spendso very little time and even recognise the issues she is dealing with xx
  15. ebee's mum

    ebee's mum Registered User

    May 21, 2016
    thank you for your response i do understand them needing time to come to terms with it all ,we were however thrown in at the deep end as she came to stay for a few days just so i could do her eye drops that was 9th dec ,so we are trying to adjust and cope on a daily basis ,i have posted those videos as they are as brilliant as they are heartbreaking but heard nothing back .i am just starting getting her out and about as there have been several other health issues too and am hopeful of specialist support making a difference for her xx

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