1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. willy57

    willy57 Registered User

    Nov 25, 2013
    My mother has dementia. My father died in March and my siblings and I are agonizing over whether to tell my mother or not. She is being cared for in a home, is unable to walk and has had dementia for several years. We feel that she would be unable to process the information, but at the moment she is aware in some way that she has not seen dad for a while and it is agonizing for her. She is in a private hell sometimes and believes that, because her beloved husband does not come to see her any more, he no longer loves her. She sobs uncontrollably and we are unable to console her. Then, as is often the case, during the next visit she is calm and asking about dad but not in a distressed way. We feel if we tell her we will have to keep repeating it over and over which would cause her distress over and over again. We would be very grateful for any thoughts from anyone who has been through a similar experience. Thank you.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    What a dreadful situation to be in . I don`t know the answer.

    If you were sure your mother wasn`t fretting about the absence of your father it would be easy enough not to tell her.

    Telling her would upset her even more, I`m sure but she might be best knowing.

    Not much help I know. I`m so sorry.
  3. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    I am so sorry to hear about your Dad, my deepest condolences. This is a difficult one. A hard decision for you and the family.

    My Dad has moderate dementia and no medium or short term memory at all. His brother died in 2013 and my Dad often asks for him as if he were still here. I tell him the truth, that my Uncle has passed away. My Mum died last year and my Dad went to the funeral. I have kept the order of service and Dad often looks at it. He knows Mum has gone, even though he has memory problems. I talk to him about her when he has been looking at the order of service. He is grieving, just as I am, although he expresses it differently.

    I can't say what's best for your Mum. My Dad's situation was a bit different; he was still at home when my Mum died, he was aware she had gone and wasn't there any more. I also feel it is appropriate to tell him when he asks that his brother has passed and he handles it okay. If your Mum has noticed your Dad's not visited it might be best to say something but only you can decide if that is appropriate. Take some advice, if you can. Could you speak with the AS dementia adviser in your area or a dementia nurse to get some insight?

    Sending you love and best wishes,
    Jane xx
  4. starryuk

    starryuk Registered User

    Nov 8, 2012

    My mum was exactly the same, although dad had died 10 years ago.
    I once made the mistake of telling her the truth. It caused mum terrible distress. However, she soon forgot the conversation and continued wondering where he was and why he had left her etc. so it seemed pointless.
    I found the best thing was to say he was at work or gone out to the shop and that he would be back in a while. That seemed to calm her down, though I felt awful about lying.
    Eventually, she seemed to forget dad, or accept that he had gone...I am not sure which, but it didn't upset her any more.

    Perhaps reassurance and 'love lies' would be easiest for your mum...I am thinking that telling her will be very distressing, whether or not she can hold on to the information.
    Heartbreaking. I am so sorry.
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Willy57, welcome to TP
    She's in a home and has had dementia for years (although she may not have been in the home for years) and your dad only died in March (2 months ago) then either you can tell her, but, she may forget and keep asking and every time it will be for her like she finds out for the first time, how distressing would that be for her?
    On the other hand you could do what on here is often called a "love lie", make like he's still alive but can't get there, he sends his love, working abroad or whatever...I'm no good with lies but sometimes it may be the kinder option, if she's like my mum then in time she will forget.
  6. #6 DazeInOurLives, May 11, 2015
    Last edited: May 11, 2015
    This is tough. When I think it's probably better not to tell her, I think of her ongoing distress at his absence and wonder what is really best.

    My Mum goes between recalling and forgetting that my Dad died 3 years ago after 4-5 years of alzheimer's disease. I follow her lead as to how to respond at any one moment. Sometimes she thinks he has gone for a lie down, other times she knows that he has died and we commiserate our (massive) loss together. What she needs to hear at these times is that he didn't want to leave her (she sometimes thinks he died on purpose, perhaps mixing him up with her brother who did!) and that he loved her dearly and was very concerned that I would always be there for her. Sometimes the staff hear her talking to him in a very contented way.

    My friend's Mum started fretting terribly about needing to visit her own mother in Italy (who had died many decades ago). It became a real preoccupation and cause of agitation and the care home staff were at a loss as to how to help. In the end, the family and arranged a proper mini-memorial service for the mother, in a chapel with a priest, hymns and a commemorative photo card to use as a keepsake. It worked exactly as intended - despite her very advanced dementia, she found a sense of peace in the matter. She no longer speaks of her mother, she no longer packs to visit her, but nor is she distressed (luckily) when she sees the card. Her strong Catholic faith perhaps helps in this regard.

    I don't know what the answer is, only that it may not be the same from one day to the next. Follow her lead and try to say what seems authentic to her, as long as it comforts her.

    So painful, so sorry.

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