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Is the 'customer' ALWAYS right?

Discussion in 'I have a partner with dementia' started by JosieEm, Nov 2, 2015.

  1. JosieEm

    JosieEm Registered User

    Aug 14, 2015
    7
    My husband of 51 years was diagnosed with dementia in January of this year. Five years ago he had a massive cardiac arrest which kept him in hospital for 6 1/2 months and from which he sustained brain damage from lack of oxygen. He made a miraculous - though not full - recovery, but now that dementia has set in, the picture has changed from hope of more improvement to the relentless downward journey.

    Sorry, all that is because this is my first post. My question today is that the books all say the patient 'is always right', but when he has bad dreams I feel I need to contradict him and say 'it's only a dream', but confess it doesn't work that well. It's often that he thinks he is elsewhere and wants to get home. Is it so wrong to try to convince him that he is home and just having a bad dream? Is there a better way?
     
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Hi I don't think it is necessarily the case of a relentless downward journey. I think there is hope of neuroplasticity even with dementia.

    I know the wanting to go home syndrome well and all I vary it sometimes changing the subject or this is a nice place to live for now, perhaps we will go home one of these days. Good luck I am sure others will be along soon to give lost of support.
     
  3. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    #3 lin1, Nov 2, 2015
    Last edited: Nov 2, 2015
    Hello, Welcome to TP though I am sorry you have had to find us.
    I found that trying to explaine/ prove that mum was wrong, in her own home usually didn't work and could actually cause her to become angry or distressed with me.
    You see IMO what they believe, see or hear is their reality and although they may be wrong, it is very real for them.

    When my mum wanted to go home , I believe it was her childhood home , where she felt safe, likewise wanting her mum.
    Just to give you a few ideas.
    I used to say things like, the buses are not running today, I'll take you tomorrow, or let's have/ do (anything you choose) first.
    Mums coming later, she is having a sleep and we mustn't disturb her, (I never did tell her her mum had died around 70 yrs ago)
    Then I used some distraction.

    Their is an old thread on here called compassionate communication with the memory impaired that may give you some ideas.
    Back in a mo with the link
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    Hi JosieEm

    Well the 'customer ' is always right in their own minds-and it helps to play along-but it's so difficult and nigh on impossible to do it every time. I did find that acknowledging worked quite well. My late Husband also went through a stage of having bad dreams and thinking it was 'real life'. Now that is difficult to do. If you agree the terrible things that happened in a dream is real (as he thinks) you may well be reinforcing his fear. I used to say something like 'that sounds quite scary-lets have a cuppa and something to eat'. Distraction can work. Sometimes it's a case of waiting for the event/mood to pass.

    As for 'going home' again acknowledge; use 'love lies' no trains/buses/loads of traffic on the roads etc.

    As I say it's very difficult.

    Take care

    Lyn T XX
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,496
    Female
    London
    Whenever OH wakes from a nap confused and babbling nonsense, I simply give him a cuddle and reassure him over and over that he is safe and everything is ok. He isn't asking to go home but I figure it can't do any harm to reassure him.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    9,384
    Female
    South coast
    Compassionate communication is a tool - a very good tool and helps enormously, but sometimes you just cant go along with their delusions - the bad dreams are a case in point, or if their delusions distress them and you cant say anything to appease them. Someone on here tells the story of her husband thinking that there were bad men in the house, so she went out in the corridor, opened the front door, ordered all "the men" out, shut the front door and told him they were gone! Ingenious!
    Sometimes when they are asking to go home and not recognising their own home you can get them out of the loop by walking, or driving, them round the block and saying brightly "ah, we're home again"
    It doesnt always work though, and if distraction/compassionate communication/little white lies, doesnt either then a useful phrase that I have found is "I thought......" (or similar variant)

    I thought it was a bad dream
    I dont think your husband is having an affair
    I thought your son came to visit yesterday

    That way your are telling the truth, but not contradicting them.

    Just go with whatever helps.
     
  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,491
    Female
    Near Southampton
    I think it's a case of reassurance when someone is frightened rather than agreeing every time.
    I used to tell my husband who was crying because 'they' were coming for him that he'd had a bad dream. There was no way anyone could enter into a dialogue that agreed with his fears. How could that be compassionate?
    Where fear is not a factor, then a diversion can help.
    What doesn't is contradiction and correction and this is where entering inot the dementia sufferer's world is essential.
    We live and we learn.:)
     
  8. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Personally, I found from my own experience with my late husband, that you have to assess each event, and deal with them individually. John had Alzheimer's, and following a heart attack, also had Vascular Dementia, and some other illnesses as well.

    For example, when he was very distressed, and said that he couldn't get to sleep, (though he had been) because there were so many people in his "ward" making a noise, it would have been absolutely fruitless to tell him there was nobody else there.

    We live in a bungalow, so instead, I got up from the chair, walked to his bedroom, flung open the door and shouted something like "Shut up all of you! None of you are supposed to be here! This is John's room, so clear off now! Go on!"

    Similarly one morning, long after he woke up, he told me "Mrs Thatcher's here, and I'm in my pyjamas", so it would have been absolutely pointless saying that (a) she wouldn't be visiting us and (b) she was dead. Instead I went in the hall, spoke to the wall and said that it was lovely of her to call on us but it wasn't convenient. Then I opened the front door (you've got to act out the part ;)), and called out, to the air "mind how you go". :)

    When he woke me at 3 in the morning, to ask if I was "with child" (his exact words) I said that I wasn't sure, but I'd let him know, when I knew. We were together nearly 50 years so I wasn't exactly of child bearing years. ;)

    I think that in his case, John couldn't separate dreams, or nightmares, from reality, so in his mind it was all true. Changing the subject, was always the easiest option, following murmurs of reassurance. I'd say things like "Ooooo! Look at that bird in the garden!" - as if it was a thrilling and unusual event. Or "let's have some coffee and toast!" in a bright, cheerful voice.

    It's like trying to cut up water - absolutely impossible. I wish you well. :)
     
  9. Casbow

    Casbow Registered User

    Sep 3, 2013
    980
    Colchester
    Customer always right.

    I have read with great interest the comments made on this subject. My husband paces in and out most of the day. He becomes very disturbed and agitated and keeps on about the other people. They tell him what to do. They tell him he is useless. They tell him he always does everything wrong. It is them that move things around. They break things not him. My answer has usually been that they don't excist,they are not real, they are in your head,tell them to ***off. It would seem that I am getting it all wrong.Sometimes he just gives a huge sigh of relief and says thankyou. But mostly he just gets more and more agitated and I even become frightened of him. I am not very good at this.x
     
  10. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,491
    Female
    Near Southampton
    I think if 'people' are there, in the room, then the best thing is to tell them to go away and follow it through. Make sure the television goes off too. My mother thought the people on the television were in the room with her and got very distressed. I think that may have been where my husband picked up some of his fears too but as he was in a nursing home when this paranoia was happening, I can't be sure.

    As Scarlett says, it really is a case of dealing with each occasion as it happens and finding the way to reach the sufferer and reassure them. Nothing is black and white .
     
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    It's one thing to go along with something that isn't causing any distress - the Queen Mother coming to tea, for example - (Oh, good, I'd better make a nice cake, then) but quite another when the person's very upset and no amount of trying to put them straight will work.
    I found it quite easy to pretend I'd be getting on to a solicitor or the police 'first thing tomorrow' when my mother was convinced that somebody had stolen something or was up to no good, but there was one situation where, looking back, I know I did the wrong thing.

    It was a mishmash of something she'd seen on TV and a bad dream, but for over 48 hours my mother was convinced that she and her cleaning lady had taken my father's dead body in the cleaning lady's car to a graveyard many miles away, and just dumped it. She was most dreadfully distressed and nothing anybody could say could convince her.

    However, knowing what I do now, I wouldn't bother trying to tell her over and over that I'd been there at the funeral, he'd been cremated, etc. I'd tell her that it was OK, there was nothing to worry about, I'd been to the graveyard and it was all sorted out, he'd been buried properly with a nice headstone.
    At the time, though, I suppose it seemed impossible to go along with such a weird and frankly grotesque scenario.

    All relatively easy in hindsight. That was the worst I ever had to deal with in that department, though.
     
  12. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    This has been enlightening for me. I am just getting the habit of not saying things are not real and trying to make my OH realise that. We are moving house soon and I have assured him that the people who are having his money and driving fancy cars on the proceeds are not coming with us. At least I hope they are not. Or that now the memory clinic nurse knows about the dog she will be telling everyone we have got him and we will have to hide him. We finally agreed to hide him in his pen if anyone came. The huge G S before us just looked bemused.
     
  13. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Don't do yourself down, Sweetie. It's not a case of you not being very good at it, but more you learning what works best for you. It's so hard for us to accept that there comes a point, when we just have to accept that those imaginary (to us) people, or situations, really do exist in our loved ones' minds.

    And then you have to just do your best to deal with each individual situation. But it's so hard. If I was asked to list every mistake I made, there probably wouldn't be enough paper on which to write them down! A major mistake I made was thinking I could help John by constantly correcting him. And in the early days, he'd say "I'm sorry", and I felt as if I'd kicked a puppy. :(

    And as time went on, I got exasperated, frustrated and exhausted, trying to think of ways to react. But I can look back and say "I did my best". My best might have been far worse than someone elses. Or better. But it was all I had.

    And however much friends, neighbours or relations sympathise, they just have no idea what it is like, day after day, hour after hour, trying to cope. It's only here on TP that everyone understands. It's not you, it's this bl**dy disease.
     
  14. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Wise words from Scarlett, Casbow Unfortunately we all have to find our own solutions but most revolve around being non confrontational. Sending a hug.
     
  15. Casbow

    Casbow Registered User

    Sep 3, 2013
    980
    Colchester
    Scarlett123

    Thankyou so much for always being so kind. I love him so much and when I see him constantly folding tissues or hiding his magazines so that no-one will get them,when i see him looking quite grey with the worry of the other people it breaks my heart. Then at other times when we go out and talks to everybody he passes like he has known them for years, I get so embarrased and want to tell him that he doesn,t know these people. I apologise to some people if they look a bit scared or take a step back.I never enjoy going out for fear of what it will bring. Never mind. Have to get on with it. x
     
  16. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,455
    Ireland
    Casbow, I'm so sorry you and your husband have these delusions to deal with. Been there too. William's hallucinations and paranoid delusions were horrendous until they reached a critical level and he was put on anti psychotics, which thankfully, worked quite well for him.

    When he would get quite upset or fearful about what "they " were saying, I (eventually!) found that what put him at ease most was to assure him that I was in charge here, not them. And that if there was anything to be dealt with, I would deal with it. So he really didn't need to worry about anything - I would take care of it.
    William seemed to find that very reassuring, and it would work for a while. Of course, the paranoia would arise again, and we'd go through it all again. I think for William, part of his problem was that vague knowledge that "something " was wrong, he was missing "something "- but didn't know what. It was his grasp on his memory and reality that he was missing - he hadn't actually lost any possessions.
    William also at one point used to talk to everyone he met. I actually found the vast majority of people were very quick to realise that he had "age related problems ", and were very patient and kind. Most people are nice, and don't mind at all.
     
  17. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I know it's not much
    But it's all I can do

    Here's a huge cyber hug
    And a bouquet for you :) xxxxxxxxxxxxxx
     
  18. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    5,078
    North Bucks
    wonderful
    jimbo
     
  19. JosieEm

    JosieEm Registered User

    Aug 14, 2015
    7
    As I am not sure how to post a general reply I'll start here. To say thank you for so many helpful responses. Even that it may not be 'a relentless downward journey'. I'm sorry not to have done this sooner; it was a mixture of not knowing how, being away and not finding the time. But I was / am overwhelmed at the discovery of this wonderful fountain of caring support. Thank you, thank you.
     

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