Advice on how to deal with confusion?

Discussion in 'ARCHIVE FORUM: Support discussions' started by SusanH, Dec 27, 2007.

  1. SusanH

    SusanH Registered User

    Oct 25, 2006
    51
    Hi, my Mum has mixed dementia and was only formally diagnosed a couple of months ago,although she has been suffering from dementia for several years. She is taking Reminyl as well as anti-depressants. For a long time she has been confused about where she is when she is in her home of 45 years. She often asks when she is going home and I understand this is a normal phase of this awful illness. My Dad usually tells her that they are stopping where they are for the night and sleeping in the bedroom upstairs. This seems to cause less distress than telling her that she is home, because she can't comprehend that. Recently she has begun to get distressed because she thinks she needs a ticket to sleep there. I think my Dad should just tell her they have a ticket and everything is ok, but he thinks this would be "patronising" (his word), so he tells her they don't need one and she gets very anxious and upset. Do you think it is patronising to go along with her belief in the need for a ticket? In my view anything that keeps her calm and happy is worthwhile, but my Dad finds it so difficult to do this. He sees it as lying to her. Can anyone advise us on how they have best coped with any similar situations please? We would value any advice.

    Thank you.

    Sue
     
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Sue,
    In reassuring our loved ones to avoid them getting any more confussed than the herrendous illness they are going through, in my personal experience I would give a ticket.
    I was bought up to always tell the truth BUT in the word of Alzheimer's or any form of dementia a little white lie does not hurt.
    Anything we can do to calm and reassure them is far kinder in some respects than telling them the truth.
    I wish you and your Dad all the best and in due cause more people will come on line.
    Have you had a look at the fact sheets and there is always the A.S. Local Branch.
    Best wishes. Christine
     
  3. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    From my experience even if your dad did tell your mum he had a 'ticket', within minutes she would be worrying about something else which she (seemingly) randomly picks up on. At least if she is worrying that she hasn't got a ticket dad can keep reassuring her that she doesn't need one. Family support means so much when coping with this terrible illness and how glad your dad must feel that he has your love and concern. xx TinaT
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I can understand your dad feeling he is being patronising - I feel like that everytime I 'chop' a dinner for my mum as I would for a child - but you learn ways to 'present' the situation in ways that you are not demeaning them (even if it does break your heart) ....... Deceitful? No - I now see it as being inventive ........

    Your dad - as of course you - must be suffering enormous grief - as we all are - and part of that process is denial. Reading deeply between lines (forgive if I am wrong) that is where your dad is firmly rooted now - and by giving a 'ticket' he has himself to reach the acceptance part of the grief process ........ Your dad is actually already 'lying' ..... by suggesting they are simply 'stopping here for the night'. For 'lying' replace with 'being inventive' ....... as well as holding on to his denial ......

    My heart goes out to those who are not only grieving for what is happening to one parent but 'caring for the carer' ....... they each need so much help and support in different ways ........

    My personal view - let mum have a ticket - create something special - and let dad have one too - there may be times he needs 'permission' most .......

    Much love, Karen, x
     
  5. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    This is such a tricky question. If you haven't already read the thread entitled "Validation, honesty and lying", may I suggest you read it??

    It might be helpful for your Dad if you download it (the thread) and print it out for him to read.

    Pandering to the condition of those with dementia can seem very demeaning and patronising. It speaks volumes for your Dad's relationship with your Mum that he doesn't want to do this.

    But sadly, it seems that we really need to do this to keep the ones we love comforted and not to increase their anxieties.

    As a child (albeit 56 years old!) of a person with dementia, I found the "lying" or "going along with fantasies" very hard to do. My parents were sticklers for "the truth" when we were growing up! Anything less seems like it dishonours them in some way.

    But the reality is that we are protecting them, allaying their anxieties, helping them avoid distress. I think if your Dad can see that it is for your MUM's sake that these things are done, he may find it possible (but never easy) to do them.

    I wish all of you a successful outcome to this very vexed situation.
     
  6. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Mum has been with us since Sep 6 and now I find it easier and less frustrating to enter 'Mums World'.
    It is the 'carers' who are confused, the sufferer is ONLY confused, when others question them.
    Love janetruth x
     
  7. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    It's me again I meant Sept 2006.
    Love janetruth x
     
  8. SusanH

    SusanH Registered User

    Oct 25, 2006
    51
    Many thanks for all your thoughts and comments. I have looked at the Validation, honesty and lying thread and found it very interesting and though-provoking. I will see if my Dad will read it too. Yesterday I gave him a copy of the book "The Simplicity of Dementia", which I found very helpful after it was recommended on here. I hope that will help him too. He says though he will have to read it "undercover" as Mum would be very angry if she saw him reading it. This baffles me, but oh well, he sees her every day and knows her triggers.

    Thank you again, it is good not to feel so alone in this. I think you have to go through it to understand it.

    sue
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Please don`t be baffled by this Sue.

    I`ve no idea how much your mother knows about her condition, but even if she knows it all, your father just doesn`t want to rub it in.

    It can`t be very pleasant having a book lying around about dementia, and knowing it is about you.

    My husband knows he has Alzheimers, but he is embarrassed by it, sees it as a `mental illness` depicting a weakness in intellect and wouldn`t like it discussed with all and sundry.
     
  10. SusanH

    SusanH Registered User

    Oct 25, 2006
    51
    Thanks for those comments, Sylvia, I hadn't thought of it like that. I guess I hadn't thought that Mum might interpret Dad wanting to learn about her illness as embarrassing, but I can see how it might be. One of my (many!) faults is that I am very open about things and this can sometimes blind me to the fact that not everyone's the same. My Mum for one has never been one to discuss anything personal, even within the family, so I guess we need to be sensitive to her feelings. My Dad, in contrast is like me (or rather, I must be like him) - another open book!

    Sue
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Dear Sue,

    I`m probably like you and your father, call a spade a spade and don`t feel there`s any shame in any illness. Dementia is not self inflicted.

    People like your mother and my husband, once very private, are still private, even with dementia. I was told by a nurse that however people are affected by dementia, their basic character doesn`t change. I have since found out it doesn`t always apply, but it`s not a bad rule of thumb.

    It`s as well you and your father share the same characteristics. At least you can be open with each other.

    Love xx
     
  12. Scoop

    Scoop Registered User

    Nov 20, 2006
    99
    Hi Sue,

    Sounds very much like my Mum and Dad, albeit the other way round - Mum Caring for Dad, we have yet to find the best way to deal with the same kind of issues, wanting to go home in the evening and stuff, sometimes he settles others things start to flare up, we try going along with it and not going along with it, but as with so many things dementia related nothing seems to consistantly work!

    We also have the same thing that Mum can't get chance to read anything about Dementia near my Dad as he gets disturbed and upset, even talking on the phone is a no no. We normally use the method, she tells me about what's going on, new stuff occuring, I go away and read up on it and relay as much info as I can back to her, only way we seem to get round it.

    Sometimes we can actually have a straight conversation about his memory problems but mostly in his mind it's not happening and no-one else has noticed...

    No easy way with any of this...

    Good luck!

    Scott
     
  13. TomN235

    TomN235 Registered User

    Mar 5, 2007
    6
    So sorry you have to go through all this. All I can say is that my Mum had very similar ideas - she usually thought that the flat she was living in wasn't hers but that she was just renting the bedroom from the lady upstairs and was constantly worried that the lady upstairs would throw her out. The neighbours and I just constantly tried to re-assure her. The neighbours found it harder to lie and usually just showed her all her belongings in the flat to demonstrate that it was hers whereas I sometimes just went along and reminded her of how nice the lady upstairs is and that she would never dream of throwing anyone out. Neither method seemed to disperse the anxieties very well though. I do think that going along with their ideas can be the best way though. Just try and stay calm and patient - I know it's very hard and I certainly don't always succeed).

    Also had similar problems with reading Alzheimer material in front of her. In the early stages she heavily denied that anything was wrong with her and got very angry if you suggested otherwise. Then it calmed down a bit and she genuinely didn't seem to be aware of her situation. Now she is getting more frustrated again and keeps saying that she is just 'so stupid' because she can't solve the problems she comes up with herself ('What if those who aren't here are here? or What if i want to do the thing I don't want to do? are two classic examples.) Again, all you can do is offer reassurance and tell them that they will be fine and that they are doing everything right (in their circumstances - which you don't have to say).

    Cheers,
    Tom
     
  14. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    To paraphrase - Truth is the first casualty of Alzheimers! Since our loved ones with Alzheimers are living in a world where reality is unreal who can say what truth is?
     

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