1. NanLorac

    NanLorac Registered User

    May 14, 2012
    686
    Female
    Scotland
    My husband is in his own wee world most days for the past 6 weeks and doesn't know me. He is dellusional and I mostly play music on the radio or his ipod, Vintage Tv channel is good and old Open all Hours etc. David Attenborough was bringing lions into the house. When he walks into a corner and gets stuck or walks to far and gets too tired to get back to his chair thats when he shouts my name. I am what ever he thinks I am , the nurse, the carer that works with his suppot worker, the sitter when he wants his Mum late at night. My kids are living in this world too and stroking his back, hand holding, just to reassuring him that we are here. Before this that agitation and shouting swearing was terrible and they are adjusting his medication to help this.

    My SIL came round on Saturday and I said "he's in his own wee world, just go with the flow" No, "Hi it's Linda your wee sister, do you remember me? Yes you do" The TV was on and she spoke about the music then said I remember that in South Africa ( we lived there for 3yrs and so did her and her husband, they also worked at the same company) next half hour was "do you remember him? and what was that guys name? do you remember the club we went to? We did this, we did that.

    Saturday night I was up with him for 2hrs agitated, just words no meaning at all. This had happened 2 weeks before after her visit he was an hour and a half just the same as this week. I sent a message saying I think she needs to stop talking about S.A. as I think this is causing the agitation at night. Hubby was the same on Wednesday after his brothers visit, up an hour agitated just babbling words. He sleeps about 11hrs a night normally just now with 2 toilet trips but agitated the 3 nights after they visited and it's nothing to do with them

    BIL on the phone saying his sister is upset that I think she is upsetting her brother. "I mean what the ****are we supposed to talk about. (Last month he told me his brother should be in a home.) I gave them both a copy of compassionate communication in an email a few months ago and said that they need to take the lead from him as to where the conversation goes. Help
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    You will just have to keep trying to hammer it home Nan, but some people are unable to listen, firmly believing they know best.

    My sister kept saying Dhiren was bored, he needed a `project`. She told me of all the happy people she visited in a local home, all with dementia, all happy and laughing. It must have been something I was doing wrong. In the end I stopped discussing him with her. Lucky for me she lived 300 miles away so visiting wasn’t a problem.

    Sometimes we have to risk offence and be more assertive than we would like to be. It`s no one`s fault. So many people think they know about dementia but fail the test miserably.
     
  3. NanLorac

    NanLorac Registered User

    May 14, 2012
    686
    Female
    Scotland
    I had a battle with them last year as Cameron refused to go for lunch. His brother as sister met up with him at his Mum's before she died but had very little contact other than that. 2014 a year after Cameron was diagnosed SIL decided the three of them would go out for lunch, then the places were too noisy for him so they went to her flat. Move on 6 months and Cameron's sight was a problem and he couldn't manage the steps to her flat. ( now we know he has PCA ) They moved to BIL's house and my BIL's wife joined in and Cameron was upset when he got back and said he missed me. Following month lunch date came up and he refused to go. BIL. Why?? I said maybe it's because the 3 of them were there. "He goes to all these other groups with lots of people, we are his family, his sister is really upset" Took me a while to get the reason why he would'nt go, meanwhile I am the big bad wife. Cameron said "there is all them and I'm a changed guy" he was 64 and his siblings have nothing wrong with them. His sister and brother didn't get this and didn't visit for months. So its not the first run in with them Sylvia.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,894
    Kent
    I`m afraid it`s why to some extent we became isolated. It was easier to isolate ourselves than cope with the after effect of well meaning people who didn`t have a clue.

    I suppose I was lucky Dhiren had no family of his own here other than Paul and Paul was wonderful with him.
     
  5. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,108
    hertfordshire
    Yes Granny G, that is why I make excuses why my Dads brothers and their wives can't visit my Mum in the dementia wing of the care home she now lives in. They have no understanding of dementia and when asking Dad on the phone after her they say " well hope she's better soon" :eek: it is so frustrating and believe me I have tried explaining it all to them, but other than getting out glove puppets, I don't see how I will ever make them understand x

    Ange
     
  6. Jessbow

    Jessbow Registered User

    The phrase that used to get me, when I was explaining something to someone was

    ''Why don't you make her''

    Why don't I make her what? Why don't I make her make her own sandwich for lunch?
    Why don't I make her shower?
    Why don't I make her understand that her husband of 54 years died. That's it, I should have MADE her understand.

    Magic wand anyone?
     
  7. NanLorac

    NanLorac Registered User

    May 14, 2012
    686
    Female
    Scotland
    Glad to know I'm not the only one struggling with in laws. Cameron has now been diagnosed with PCA so "no he can't see the guy on Tv with the white shirt, he can't see the Tv" :mad:
     
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    According to a Canadian aunt (14 years my mother's junior) it was my mother's own fault that she got dementia.
    If she had only been like the sprightly 90 year olds at her church, so busy busy busy and socialising non stop, she'd never have got it.

    She's one of those people who always know best about everything, always know where everyone else is at fault, and enjoy 'speaking their mind' all the time.
    I don't communicate with the judgemental old bag any more.
     
  9. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    Now come on, say what you really feel about her :D

    I've got someone, who could be considered closely involved with pwd, but still doesn't know how to talk/communicate with mum.....

    They are very good at their job apparently.... So they say... :rolleyes:


    Sent from my iPhone using Talking Point
     
  10. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    #10 Katrine, Oct 11, 2016
    Last edited: Oct 11, 2016
    My mum's best friend was a sprightly 90 year old, still driving, busy busy visiting those in need, active Christian; she was a bible smuggler and missionary until she was 80. She was the sort of person who never sat still, as if old age wasn't going to catch up with her if she kept on the move! She had her ailments, but always made light of them. She was a little forgetful, but got by with systems and routines, and razor sharp intelligence.

    She is now 93 and in the last 18 months she's had falls and fractures, cataract operations, been hospitalised with aspiration pneumonia, and now employs a carer/housekeeper. What do you think your aunt would say Witzend? Perhaps she's just not trying hard enough to live forever? :rolleyes:
     
  11. irismary

    irismary Registered User

    Feb 7, 2015
    499
    West Midlands
    I needed a magic wand yesterday at dentist. Mr **** you need to keep your mouth open. 5 seconds later she says to me "he needs to keep his mouth open". Yes I know what am I supposed to do - he doesn't understand for crying out loud he has Alzheimer's!
     
  12. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,156
    Toronto, Canada
    Witzend, is it possible your judgemental old bag and my dreaded aunt are the same person?;) My aunt said that drinking lots of water "will cure Alzheimer's". Well, at least it kept Mum hydrated. She also told all and sundry in the nursing home that I never visited and I knew nothing about my mother's illness. Believe me, the wrong sister got Alzheimer's.
     
  13. DMac

    DMac Registered User

    Jul 18, 2015
    535
    Female
    Surrey, UK
    In-laws...ugh! :mad:

    This lack of understanding and offering unhelpful advice or (worse) judgements seems to be a common experience.

    It took me a while to learn that I could never rationalise with my parents-in-law (both with dementia, at the same time), so just had to 'go with the flow' or, perhaps, try gentle persuasion on some occasions, with varying results. Getting F-i-L to open his mouth for the dentist was one such challenge! He was fairly compliant, and in his case I could manage by miming the action to him, as one might to a child. I should stress I'm not offering advice here - that would be patronising! :eek: - just recounting my experience.

    It has taken me a lot longer to realise that I can not, and never will, be able to rationalise with my S-i-Ls and B-i-Ls. One S-i-L in particular has had an almost pathological 'in-denial' mindset about her mother's condition. After F-i-L passed away earlier this year, M-i-L went into a care home soon afterwards. M-i-L doesn't understand why she needs to be there, or the horrific sequence of events leading up to her admission (wandering out in front of fast-moving traffic :eek:). S-i-L attempts to correct her mum's 'misunderstanding' by recounting these terrible details. This then, of course, triggers tears and upset. I've witnessed this first hand. Compassionate communication? I would give her the leaflet, but she'd be far too busy to read it. :rolleyes:

    S-i-L also takes M-i-L out at every available opportunity, to parties, pampering sessions, you name it! And don't get me started about exciting plans for Christmas....:mad::rolleyes:

    Don't get me wrong. It's lovely that S-i-L loves her mum and wants to preserve some sort of 'normality' for her. I get that, and in fact my OH and I also take M-i-L out, whilst she's still able to get some enjoyment from going out - our outings are much lower-key though! But I have resigned myself to the sad fact that S-i-L won't change, and there is no point worrying about it. I guess we all do what we think is best, but like babies, PWDs don't come with handbooks, so we have to muddle along as best we can.

    Sorry for rambling and hope I haven't hijacked this thread. I guess this just triggered a spark of recognition. It helps to be able to express my frustrations here, I couldn't say these things anywhere else. Thank you. xx
     
  14. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    #14 Witzend, Oct 12, 2016
    Last edited: Oct 12, 2016
    I hope yours isn't as bad as mine! Besides being unable to keep her judgemental mouth shut, she's the most dreadful prude. While on a visit here with her teen granddaughter she was appalled that said g-daughter bought herself some new knickers while my BiL happened to be present. Heaven forfend that any MAN should glimpse one's undergarments, even when they're in a 6 pack on a market stall!
    Bonkers.
    I don't know why she's like that - none of the rest of her family ever were.
     
  15. Trini

    Trini Registered User

    Dec 7, 2015
    39
    Thank you all. Your posts have made me giggle. It is all so resonant of my own experience with SIL in denial for years. MIL was not incontinent it was just an accident, and another and another.....she doesn't want meals on wheels she is fine, she won't starve. The fall was just a one off, must have slipped on something. Yes she took herself off from the hospital and had the police out looking for her but she was remarkably resilient and resourceful to find her way back to her childhood home! She does not need a wheel chair. The carer just needs to get her walking more. Her muscles are obviously wasting away from lack of use!!!!
    I could go on but won't. You all get it.
    Thank you for the TP lifeline.
     
  16. Hill Man

    Hill Man Registered User

    Apr 10, 2016
    61
    Mid Wales
    I think the problem is that the general publics understanding of AD and dementia is that its a problem about loss of specific memories. My dads memories seem to be very clear but they seem to have come unattached from his sense of time and place and are like boats adrift in a harbor banging against each other. I feel that he is still trying to make sense of his world but is struggling to understand how the bits fit together. I could quite understand how such a discussion on specific things in the past might aggravate him as he would now have lots of newly uncovered memory fragments which he would have to try to align
     
  17. NanLorac

    NanLorac Registered User

    May 14, 2012
    686
    Female
    Scotland
    Exactly. My husband is now in a care home and BIL will continue to agitate my husband. SIL was better the last time she visited.
     
  18. 2jays

    2jays Registered User

    Jun 4, 2010
    11,598
    West Midlands
    What a clever analogy
    Like boats adrift in a harbour

    That makes such sense to me
    Xxx






    Sent from my iPhone using Talking Point
     

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