So what happens when nothing works?

Discussion in 'I care for a person with dementia' started by Mati, Jul 29, 2015.

  1. Mati

    Mati Registered User

    Jul 9, 2015
    My mum suffers with dementia and nearly four months ago we lost my Dad. Mum doesn't remember. At first we told her what had happened whenever she asked where Dad was. This obviously resulted in fresh grief every time. She would sometimes also get very angry and ask us why we hadn't taken her to see him and why hadn't she been there when he died (she was always with us and with us when he died). She couldn't remember any of it.

    I then came on this forum to see what I could do and was told to not tell her the truth. "Love lies" someone called them. So we told her he was still in hospital. She then wanted to go and see him! We tried various plausable excuses but she would accept none of them. Getting very angry again at what she saw as her daughters stopping her from seeing her husband. This was worse than the original grief.

    She could not be distracted, persuaded to think about anything else. We also had the additional problem now that she wanted to leave the house in order to find him herself seeing as we wouldn't take her. She hates leaving the house but was now determined to do so.

    Any alternative we tried where he was still alive resulted in her wanting to see him and further explosions of frustration and grief.

    Our life at home now is horrible. We talk about nothing else apart from the death of our Dad. Mum thinks about nothing else. She spends the days, and sometimes nights, crying, sobbing or in angry rages telling me and my sister how horrible we are for not taking her to see him or be with him. I go to work tired and upset and my sister, who is her full time carer, gets to experience it 24/7. We have both always lived at home with our parents and we have always been a loving and happy family.

    All the information in these forums leads us to believe lying is better but it really isn't in her case. You are told not to tell them that they forget but what do you say when she asks why she can't remember he died? She has a follow up answer for everything and never gives up.

    So, what do you do when nothing works?
  2. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Mati,

    I really feel for you.

    Though I am British, I live in the far east and in the place I live it is common to take photographs of the deceased person in their coffin surrounded by flowers. This picture can then be put up in the house. I know that to a lot of the people in other cultures this might be upsetting and gruesome, but in practice it actually helps people accept what has happened (and remember in cases such as your mum's).

    In your case it is hard to know what to suggest. It seems your mum now knows and remembers that your dad has passed away, but she doesn't remember that she was there at the time. All I can think of is to try talking positively about the way your dad passed. Maybe something like "Dad was so peaceful at the end. You were so releived about that, mum."

    Sorry, that's all I can think of at the minute, other than talking to your mum's doctor who might prescribe and anti-depressant or something.

    Best of luck,

  3. Mati

    Mati Registered User

    Jul 9, 2015
    Thanks LS.

    Strangely enough we did think of it at the time, taking pictures of him in his death bed at the hospital and even taking picture at the cremation but thought it was a bit morbid. With hindsight I really wish I had.
  4. Risa

    Risa Registered User

    Apr 13, 2015
    Hi Mati

    I feel for you as my mum can spend 6 or more hours a day obsessing over her late parents and insisting she has to go 'home' or her Dad will be angry with her. Unless she is given a tablet to calm her down, there is absolutely no reasoning with her and because she is physically very active, she will just storm out of the house to try to catch a bus 'home'. We too have tried distraction, the truth and love lies but Mum is like a dog with a bone and won't drop the subject. It does get very distressing for the entire family and we don't like seeing Mum get worked up so Mum takes Amitriptyline to keep her calmer and happier.

    I would definitely recommend talking to your GP about whether medication would help the situation.
  5. Mati

    Mati Registered User

    Jul 9, 2015
    Thank you Risa.

    Sounds strange but sometimes it is helpful just knowing that there isn't anything you can do, that you are not missing out on some vital information that would make things easier.
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #6 Shedrech, Jul 29, 2015
    Last edited: Jul 29, 2015
    I think Long-Suffering has hit on something Mati.
    I've noticed that with dad if I give him the memory he can't retrieve for himself and talk about whatever it is as though he can remember - kind of speaking both sides of the conversation we would have had pre-dementia - it gives him a chance to tap into what I am saying and sometimes he does add something of his own, others he changes the subject himself, which I take to mean he doesn't want to engage, which is fine. No questions; no 'Remember when ...' or any other words linked to memory; just launch in with statements and description as with L-S's example.
    And you're all grieving which is a whole mix of emotions anyway.
    Maybe when she asks why she can't remember when he died try some of the things we might tell ourselves - you were so upset it's gone to the back of your mind - it's hard for any of us to remember exactly what happened - everything happened so quickly, it's becoming unclear in my mind - maybe you want to think of the good times instead - because you are grieving and grief messes up our thoughts .....
    Apologies if any of this is not appropriate
    and my condolences to your family

    PS this crossed with your reply to Risa - and you're right, there are no magic answers - sometimes you just have to wait out the storm; just keep being there
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    My son and I took photos of my husband in his coffin. It felt right.

    At one time, hearing it from others, I would have shuddered. When it`s your own it must be different.

    I have a completely different outlook on death since my husband died. Originally I had no intention of viewing him but something changed my mind.

    My husband was Indian but he never mentioned viewing the deceased. I was surprised be my change of mind as was everyone else. I`m so glad I saw him. He looked lovely.
  8. marionq

    marionq Registered User

    Apr 24, 2013
    Mati the advice on here is not always right for everyone. It just gives you a snapshot of how other people handle things. My husband wants to visit his dead brothers almost daily. If I can gloss over it I do but mostly I have to talk over their deaths and the circumstances. If I didn't do this openly he would be out the door searching for them. Within five minutes he has forgotten until the next time!
  9. Mati

    Mati Registered User

    Jul 9, 2015
    It is good to hear how others deal in case there is something you can use though. I found out the first time that not all advice is right for everyone. The "Love Lies" definitely did not work with my mum but it was worth giving it a try to get her some peace.
  10. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015

    Hi Grannie G,

    Like you, hearing it from other people before I came here, I would have shuddered, but I have been here over 20 years now, and my whole outlook has changed.

    Where I live, when a person passes away, the family and friends are very involved with everything right up to burial in the graveyard. When people pass away at the hospital or in a home, we stay with them. We wait an hour, then we all take part in washing the person and dressing them in a clean robe. Then when the staff from the mortuary come, we accompany them down to the mortuary and help them lay the person out in a special little room that has a beautiful shrine decorated with candles, flowers, etc. Everyone prays for them, including the doctors and nurses who were treating them.

    On the day of the cremation, it's always an open casket affair. Friends and family stand round the coffin, talk to the deceased, touch them, kiss them, put flowers, cigarettes, books, anything they liked into the coffin and take pictures. Then everyone lowers the lid together and wheels them to the main room of the crematorium. We take one last look at their face, then the staff wheel the casket into the oven. Family and friends go off for an hour to a reception room, drink lots of alcohol and eat, and talk about the deceased person, all the good memories. After an hour, the staff come to collect us, take us back to the oven, and family and friends transfer the ashes and bones to the urn themselves (this is where having drunk some beer is handy if you are squeamish about these things). The urn is then packaged up beautifully and taken home by the principal mourner, where it sits on the sideboard in a shrine for 70 days. After that, we go to the cemetery and the urn is interred.

    All this may sound shocking to people from Western cultures, but having done it several times now, it actually really helps with the grieving process. I feel very happy now to have done those special things for my friends and in-laws. It gives you a feeling of satisfaction. When my own parents pass away, I would like to at least be able to wash them down and dress them. Not sure how the NHS staff would take to that idea, but we shall see.

  11. beverrino

    beverrino Registered User

    Jan 12, 2015
    Hi Mati

    this sounds so familiar to me. My Dad died almost 8 months ago and we went through the exact same thing you said. We were all with him when he died, but she couldn't remember any of it. She kept asking when we were going to the hospital and when was he coming home - and continuing to buy food for him. Like you, it was fresh grief all over again - the first months being the worst.
    I knew I could not use 'love lies' as I do not believe it to be appropriate in this situation - though there are other situations where 'love lies' could be used.
    I would just like to say that it does get easier - very occasionally she asks where he is now or when he is coming home but it doesn't bring that shock of grief anymore and she soon gets past it - so something finally did register. In the beginning she kept trying to run away - it was dreadful - and talked about going into the sea to drown (we live in a seaside town). She has no memory of the funeral either and I think sometimes these memories were blocked out (if there were indeed any in the first place).
    she is still very sad and lonely, and I still feel that I never had the chance to grieve properly for my Dad myself, as Mum needed so much care.
    I really feel for you, I do. It is a very difficult thing to deal with but if your mum is anything like mine - things do get easier on that side anyway.
    Take care xx
  12. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    That sounds like a really difficult situation to be in, you have all my sympathy.

    Have you tried a photo album with family photos of him to show her, just in case talking and looking at pictures would help her calm down? Would she accept it if you told her that he had been called away urgently overnight, and would be back tomorrow?
  13. Mati

    Mati Registered User

    Jul 9, 2015
    We did have some photos around the front room but we found it just jogged her memory more often that he wasn't there bringing on the questions more frequently.
    Unfortunately because my Dad was 78 when he died he had been retired for 13 years and spent all his time at home in front of the TV!! She would be suspicious as to where he had been called away too!
  14. mancmum

    mancmum Registered User

    Feb 6, 2012
    My Dad has copy of order of service for funeral on display.

    This worked for us. Plus writing it on a memory board ...although the fact we moved him to live with us probably helps as well.

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