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No recognition

Discussion in 'I care for a person with dementia' started by totallyconfused, Aug 11, 2017.

  1. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    My siblings act like all is ok.When family visit they look at me and question my life, what Im doing etc in front of my mother who doesn't know she has Alzheimer's. They think shes fine and I am basically wasting my life.

    They were all told the diagnosis. No one asks how she is or how I am. I feel like I shouldn't have to run after people with updates etc all the time, especially when they don't believe it.

    I try and limit how often my siblings visit and have said one to one time is best but they take personal offence to not being able to visit everyday/at the same time. My mother has said its so much better one to one.

    I know Ive done right for my mother but Its hard not to feel like a total failure when everyone is looking at you as if you were and that your life is over.
  2. father ted

    father ted Registered User

    Aug 16, 2010
    Totally confused you are doing a fantastic job. Of course you don't want to discuss how you and your mother are in front of your mother and it would seem that amongst your siblings you are the only one with the emotional intelligence to understand how inappropriate that would be.

    What they should be doing is offering to take their turn so you could have sometime to yourself in the week. They should be staggering their visits so Mum has visitors to look forward to most days. They should think to take you aside to get an update on how you and Mum really are away from Mum's hearing and seeing how they can help.

    Unfortunately families don't always pull together and if it is dragging you down ask them for help, say you really need it and let them step up. If you get nowhere you arrange things for Mum with carers/ sitters from outside for the convenience of both of you. Take care.
  3. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Thanks. Its hard when family members are asking why don't I go clubbing, work, do a course etc in front of my mother and I just have to put on this act and make something up.Its hard keeping your emotions in check as I have to be positive and happy around my mother. I said it after to a few family members and they haven't been up in months. I think they took offence and feel they were only asking.

    My sister is also living at home and we have been covering it and will do so in to the future. The sad thing is that this isn't costing my siblings a cent. My extended family say they adore her. None of them have the decency to say well done, thank you etc or acknowledge how great that she can stay at home and we are doing up the garden for her.

    There just seems to be no understanding, no interest in knowing more. I don't want to hear anyone tell me they didn't know or give out to me if she doesn't recognise them the next time they visit.

    I think its a huge thing to stay at home and have always respected people who do it.
  4. Mimi5

    Mimi5 Registered User

    Apr 22, 2017
    Family members can be the worst at understanding a PWD or the carer(s) Hubby and I struggle with his uncle, MIL only other family:( He's in denial about his sister's condition and really just causes her and us upset:rolleyes: sadly his children are no better:mad:

    Sometimes I think they can't/won't face the truth. Maybe if we're being generous they aren't strong enough to deal with it.

    But I care for my MIL because I wanted to and I can see you are caring because you want to:) Are we stronger??? Who knows .....but our experiences are part of our journey and we are sure to learn from them.

    Keep posting! Always help, support and understanding on TP:D
  5. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    You have my empathy and understanding totallyconfused and are not alone in having hapless family members. My stepson put in a rare appearance yesterday and proceeded to tell his Mother that she needs to get a hobby - he even suggested that she should start to research her family tree - which just made her defensive and fall back on her usual standby that she reads books (oh no she doesn't). He is not stupid but can't (or won't) see past the end of his nose as far as understanding how much of my wife dementia has already taken.
  6. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Terrible! My siblings gave out to my mother for getting lost and said she wasn't doing anything to help herself. They were literally doing nothing for her, no help whatsoever. They just kept saying she needed a hobby, to get out of the house etc. This was soon after her husband of 40 years had died of cancer.

    I think this is payback time and we need to treat her with as much respect and decency she deserves after all she did for us.
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Maybe I'm just a hard nosed individual, but I don't understand why you should let the wider family upset you by being in denial and asking daft questions or making daft suggestions. I would simply ask them to either read up on the medical condition so that they get an understanding, or stop being unhelpful by making suggestions/comments. That may upset them but they're upsetting you and why should you be the only one that's upset when you're the one shouldering the burden.

    I realise that such an approach would be quite assertive and may not suit the personality of some carers. It's just a mild version of what I would do - and I may be totally wrong.
  8. LilyJ

    LilyJ Registered User

    Apr 13, 2017
    Can you not have your coat on ready when the family visit and say "I'll just pop out for a bit while you're here with Mum"? Then go out for half an hour or more.

    I know Ive done right for my mother but Its hard not to feel like a total failure when everyone is looking at you as if you were and that your life is over.[/QUOTE]
  9. MIA56

    MIA56 Registered User

    Dec 22, 2016
    I absolutely understand where you are at. I have been married to my DH for 30 years and in all that time his two daughters have never cooked us a meal, but I must have cooked hundreds now their dad has dementia they tell me Oh your life will change. Yep it has and just a couple of months ago when I told them they needed to help they told me that it's too much for them......after all you live 11 miles away and we work!

    They can't find time to give me a break but it's funny they manage to come for meals.
    I totally lost it with them and since then the older daughter (51 years old) has stopped speaking to me....no birthday card or contact. She calls her dad about once afornight and tells everyone her dad is fine. Also says I'm a ***** and exaggerated his dementia!!

    Oh families! I have no life except as a Carer and I do it because I want to and have to but I just wish for one day they could walk in my shoes.
  10. marionq

    marionq Registered User

    Apr 24, 2013
    Read the thread on the Impossibles. If people constantly give you grief cut them out of your life..
  11. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    can you not have your coat on ready when the family visit and say "i'll just pop out for a bit while you're here with mum"? Then go out for half an hour or more.

    I don't trust them. They always said everything was fine and even after an actual diagnosis have refused to acknowledge it, ask for updates etc. Id worry they wouldn't take proper care of her.

    Its something i need to discuss with a counsellor i suppose but im not asking to be best friends with them, just to be decent and acknowledge her illness and our good work and get on the same page as us.
  12. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    It is really tough when siblings and even extended family arent on the same page :(
    One of Mums brothers refused to believe Mums diagnosis saying it was old age and everyones memory got a bit dodgy when older and another sister said Mum was faking it!!
    My brother pretty much continued as normal and got annoyed when Mum would forget his kids birthdays or didnt take as much interest in his kids like mine & my sisters ( our kids were toddlers over 14 yrs ago) or would say he was visiting for lunch but Mum would forget and there would be no food ready. To this day I dont think hes ever read up on anything about Alzheimers. Hes a bury his head in the sand type.
    My sister was on board and she wasnt.
    I was Mums main carer, Dad was secondary.
    As things got harder to cope with and we ramped up Mums care & day care package, we had already had words about Mum going into care. She said we had to come up with solutions but end of day it was Dad coping with Mum ( which he wasnt) and I was always having to deal with the fall out.
    After me getting shingles my sister took Dad & Mum to her holiday house for 3 nights to give me a break. It had been 5 mnths since shed last done this.
    It was a nightmare!
    When they came back Mum also had no recollection of being away and didnt recognise her house.
    That was when the penny had truly dropped with my sister & BIL.
    Mum went into care just 2 mnths after this.

    I feel unless your siblings can look after your Mum for a few hours or overnight, they just arent going to get it nor appreciate what you are doing.
    When they do see your Mum what is she like? Does she put on hostess mode and appear better than what she is, as is often the case.
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    My brother and sister accept that dad has dementia but still think it's not that bad. Occasionally my sister will come and stay with dad for a few days to give me a break. Last time she came she left him an Amazon fire stick so he could have extra TV channels. Of course when I next saw him he was asking me what it was for :rolleyes:

    I know neither of them understand dad's confusion, or how life-consuming it is for me to look after him. But although I don't trust them to look after him as well as I do I know I have to have a break for my own sanity. I also think that if they didn't spend any length of time with dad they would have no idea at all what he was like.

    Brother is still completely clueless and plans treats which dad just can no longer enjoy, but I'll let bro find this out for himself :D

    I think every carer finds it hard to trust others to care for "their" person, but I also think we sometimes need to step back and let go from time to time for everyone's sake.
  14. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    shes really happy, laughing, upbeat but will usually look really tired when they leave. I tried to get people to understand over the last five years and to start treating her better. but now shes getting worse, more vulnerable its hard to leave when they aren't on same page. I feel like something will go wrong or she be worse for it and make my job harder when I get back.

    it was just a ****ty way to treat people-why would we make it up? saying we were bullying her, stopping her going on holidays with no evidence to back these claims up. they weren't living at home so they could have believed the people that were.

    Ive never been able to get over that. I need to go talk to someone I guess.

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