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Dad doesn't recognise Mum, first time this has happened... Advice please?

Discussion in 'I care for a person with dementia' started by Kevin'sdaughter, Jul 23, 2016.

  1. Kevin'sdaughter

    Kevin'sdaughter Registered User

    Jul 23, 2016
    My lovely Dad has Lewy Body Dementia, he's 87 and my Mum (84) is his dedicated carer. Today he called me looking for her.... He said she had gone somewhere because someone had died and he had his 'minder' with him. He was getting detressed and wanted me to get her home. Mum was there all the time, she was his 'minder', standing right beside him... She had been with him all day.
    It was heartbreaking, it must have distressed my Mum so much. My question is how she we deal with that? We have been given minimal advise to not argue or challenge him... But I really didn't know what to say. I went along with it and said I'd call mum and get her to come home but I'm not sure that was the right thing to do. I called him back and said she would be home soon. When I spoke to him an hour later he knew mum was there and didn't mention her previous 'absence'.
    Dad often has hallucinations but normally he sees his deceased parents or my sisters and I as young children, but this is the first time he didn't recognise mum.
    Any advice would be most appreciated.
  2. rosy18

    rosy18 Registered User

    Jul 23, 2016

    I really do sympathise and know how your Mum feels. I am my Mums sole carer she is 87 and we live together and for the past 6 months there will be some part of the day when Mum doesn't know me which breaks my heart she will ask me where is Irene so I take comfort that she is at least still thinking of me in her own way.Its just such a cruel disease
  3. Aisling

    Aisling Registered User

    Dec 5, 2015

    Yes you handled situation excellently. Done argue, don't challenge, distract. If latter doesn't work go along with it as you did.

    It is heartbreaking. My OH looks for me.... I have looked for me with him. Then I changed jacket, came around a corner saying " I am back now...." It worked sometimes.

    Aisling xx
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Kevin'sdaughter, welcome to TP and welcome to Irene too.
    My wife's at the point where she still recognises me as someone she's happy to see but not necessarily what my name is or that I'm her husband. it is very hard but it's just one of the things that come with AZ that I've had to learn to accept.
    It's equally hard on our children, how can your own Mum forget who you are? But they were erased from the memory banks some time ago and she remembers the names not the person in front of her.
    As Aisling says correcting or arguing will just make the situation worse, what they believe to be true is as real to them as what you believe is to you, to ague just causes friction and ultimately will never succeed.
    People seem to make 2 mistakes: one is you view them as an adult and expect you can explain it to them and they'll remember, they won't. The other is that you can teach them like a child, keep showing them how to tie their shoe laces and one day they'll come to you with their own shoelaces tied, that doesn't work either.
    It's about managing decline which may sound very negative but you eventually will lose the war, so why spend your time fighting battles when you can't win.
    Sorry I've even managed to depress myself writing all that but you're new here so have a read around and the one message is that it's a whole lot easier to work with what's happening than trying to fight the situation, que sera, sera.
  5. rosy18

    rosy18 Registered User

    Jul 23, 2016
    Thank you for the welcome I have found TP so helpful especially when feeling a bit low.Its so hard knowing what to do in all of the different situations.My Mum has hallucinations all the time and suddenly asks where has he or she gone,when I say they have left and it's just us two left she can get quite annoyed and says why haven't they said goodbye to her I'm constantly holding Mums hand and placating her trying to make her feel less anxious and trying diversion tactics quite often my saving grace to settle Mum is a drive in the car but that has to be a familiar route too.Mum also talks in a whisper and tells me to speak quietly to so as not to disturb other people in the house and when we return home she always looks in the rooms then says nobody is here.Mum and I live alone but she seems to think we are staying in someone else's househouse. Does anybody else have this situation?
    Just feel better writing it down sorry for rambling on
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
  7. Kevin'sdaughter

    Kevin'sdaughter Registered User

    Jul 23, 2016
    Thank you all so much for your replies, I visited my parents yesterday, Dad seemed a bit more settled and his hallucinations were somewhat reduced. I feel so sorry for my Mum, she dedicates her life to my Dad, often at the expense of her own health, and I think it broke her heart when he didn't recognise her. Dad has other health issues which means he is virtually housebound and very resistant to any help from anyone except Mum. I think we are getting to breaking point.... He has been referred to the mental health team for assessment, I'm not sure where we go from here.

    Thanks again for your advice and support, such a wicked disease, such wonderful people who care.
  8. lavender1

    lavender1 Registered User

    Jul 23, 2016
    Hello Kevin's daughter - keep your chin up and also some advice from me is look after the parent who does not have dementia. My dad has not known who my mum and I were for the past 5 years - it was not gradual; literally one day he did, then bam. It completely destroyed my mum and she went into a decline herself. She passed away suddenly last October - she had cancer, but also a broken heart. The sad thing is they were married 57 years, and my dad does not even know she existed. It is natural to put all your energies into your dad - but please make sure your mum is OK x
  9. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    My husband lost me some two years before he went into care 4 years ago. As your Father referred to your Mum as his minder he said I was the nice lady who waited with him until his wife would pick him up.

    I kept sane by thinking well at least he was happy and content to stay with me whilst he waited so he trusted me and that was all that mattered.

    In the early days when he was asking me where I was I would go out of the room, open the front door and slam it closed and call out his name and say I'm home and breeze into the room saying I took a bit longer than I thought. Sometimes it worked though in about three months I had gone completely but he was still happy to be with me while he waited.
  10. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    Hi Kevin's daughter - it sounds to me as though you dealt with the issue really well. My mother (nearly 90 and with vascular dementia) has lived with me for 5 years and she increasingly doesn't recognise me and wants to know where her daughter is. Depending on her mood I will either say, something like 'I am your daughter' or 'I don't know but I'm sure she'll be back soon'. It usually then sorts itself out.

    And hi Rosy. I have similar experiences with my mother. She frequently thinks there are other people in the house, wants to be taken 'downstairs' to supper (she has to live on the ground floor as she can't use stairs), wants to know where the snack bar is and I am frequently asked where 'the boys' are. She is always surprised that there are only 3 of us for meals as she's expecting 'the others'. She seems to think she's living in a hostel of some sort (she lived in one at university which was a really important time in her life) so I can understand it. She frequently asks where I live or who owns the house and so on. It's one of the things I've sort of got used to though it is quite disconcerting at times - and I get angry and upset at the effects of this disease on her.

    Take care both. Sue
  11. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    Hi Rodelinda

    My mum is so similar to yours, she thinks she lives in a boarding house, in truth many boarding houses as she thinks she moves almost daily.

    My mum thinks the landlady who "took her in " lives in our spare room and she stresses about why I'm not cooking for the others, she also worries that they are late home.

    Mum sometimes knows me, sometimes she doesn't. Sometimes I am her daughter, her sister, occasionally her mum and often the landlady. I am A, but also "the other A". I was really shocked when it first happened, but now I've adapted. If i could just adapt to mum's endless demands and plead to go home I would be coping a whole lot better!
  12. Cazb78

    Cazb78 Registered User

    Oct 6, 2016
    Hi rosey.

    This is exactly what my mum is like at the moment. Seemed to come on quite suddenly after a holiday in September, although we'd been noticing signs for a while. She was diagnosed 3 weeks ago with early stage mixed dementia but at moment it feels as if she's further along. She doesn't recognise dad most of the time and moans that he's never home when he's been there all day. When he does 'show up' she shouts and gives him abuse, accusing him of not caring or of going off with other women. Last few days have been really hard as she has believed my dad is her late uncle, then her late father. She also thinks her mum is still alive and when we said she had passed she cried as if it was the first time she's heard it - that was really sad. We try not to tell her people have died but in this instance we had to because she wanted to be taken home to her mum.

    Mum also believes there are others living in the house and also that her home is not her real home, but a duplicate.

    Do u mind me asking what stage they say your mum is at? Xxx
  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Another time, to avoid distress, you could maybe try the good old 'love lies'.
    My mother went through a stage of wanting to go and see her parents (by then dead 30+ and 50+ years).
    I used to say sorry, I couldn't take her today, because my car was being serviced/the roads were very busy/icy/closed because of a bad accident, anything that sounded plausible - 'But maybe we could go tomorrow.'
    This always kept her happy enough for the moment, and because her short term memory was so bad, she never remembered that I'd said much the same before.
    I know this may not work for everybody, but to me it was better than upsetting her by telling her they were long dead.
  14. smartieplum

    smartieplum Registered User

    Jul 29, 2014
    This is the part of this disease i hate,the most. I can deal with most things but this....
  15. rosy18

    rosy18 Registered User

    Jul 23, 2016

    Hi Cazb78 when Mum had her memory test which was 16 months ago they told me Mum was late stage I've known something was wrong for probably 3 years prior but couldn't get Mum to go to the GP as it is she never knew she has AZ probably a blessing.
    I wish you and your family well it's not easy.
  16. mcfad

    mcfad Registered User

    Aug 2, 2017
    Hi Cazb78. I wonder if you would be good enough to share with me how matters are now with your mum. My mum's symptoms and presentation over the last few weeks has been almost identical to those of your mum - generally ok but not recognising my dad for large parts of the day, phoning me looking for him etc. We're waiting for memory clinic but any info would be very much appreciated. This forum is proving to be a godsend already. Just sad that we all need to be here
  17. Cazb78

    Cazb78 Registered User

    Oct 6, 2016
    Hi MCFad,

    Well my mum's nearly a year on from the last post I did and she's not an awful lot different. She still doesn't recognise my dad - he is often her late father or uncle. She's told everyone my dad abandoned her because (as she puts it) she had a 'small bleed on the brain'. She was diagnosed in February with mixed dementia, probably mid stage. She will not acknowledge this though and we don't say anything. They can't give medication for predominantly vascular dementia but they did out her on quetiapine to calm her, help her sleep and to reduce hallucinations. This drug has worked well in all of those regards and mum has been fairly stable for a while and she gets a good sleep. Is she the same person though? The sad answer is no. She is slowly forgetting more things and is sad in herself. It takes an awful lot to get her to go out anymore but she does walk the dog and go food shopping with dad. Today was her 74th birthday. She enjoyed seeing her friends coming round to see her but she would repeatedly forget what each one had given her and would keep asking. We went out for a meal tonight and she was sad because she'd bought my dad with her thinking he was her uncle and she said to me 'my dad will be sad I didn't bring him because I told him earlier he would come with me'. It broke my heart because nothing I can say will help and I just have to go along with it. Most days you will cope and sometimes it hits you and you feel angry and helpless - a true rollercoaster. There are also some very funny times too though and I still laugh a lot with mum. Cherish those moments!

    Not sure exactly what advice I can give
    U. It sounds like you are at the start of the journey I began last September. Make sure you write all your concerns down and give a copy to the consultant prior to the meeting/appointment as talking about your mum in front of her may aggravate her. My mum has always been in denial and gets angry if we talk about her. Think about getting power of attorney sorted asap. Find out about help in your area and any financial help u are entitled to. Also, never argue with your mum, just go along with what she says, distract and move onto something else - which is not as easy as it sounds at times and we all lose it at times!! When my mum started not recognising my dad I would get so angry and keep telling her 'there is your husband' but it never worked. You will find you go through a range of emotions from anger, denial, guilt, acceptance etc.

    Please let me know how your mum's appointment goes. If you need anymore advice please please message me. I feel quite alone sometimes and if we can help each other in some way then that would be great.

    Sending you love and strength x
  18. mcfad

    mcfad Registered User

    Aug 2, 2017
    Hi Cazb78, thank you so much for your reply. It's good to hear from someone who's followed the same path. I'd known my mum's memory wasn't what it had been for a while but to not recognise my dad overnight was heartbreaking.

    I'll take on board everything you say about the consultant etc. It's good to know your mum's anxiety and hallucinations have been more manageable. That's the most distressing aspect - to see my mum upset when she thinks her husband is missing.

    It's hard to go along with it but my dad and I are trying our best. The only blessing is that she likes this other man living in her house - she does find him exasperating but that's what she thought about my dad before all this happened! At times she thinks he's her dad, at times my other grandad, looks for a younger version, its all a muddle at those times. It must be hard to hear your mum be angry at your dad.

    The difficult part is seeing her able to deal with other things and people quite happily but that is, like you say, something to treasure and I am going to try to focus my energies on spending time with her and enjoying things.

    Thank you again for your reply. I will be thinking of you and your mum and dad. Feel free to contact me at any time to share or to vent/cry. I have two brothers who aren't the best with feelings and none of my friends' parents are at this stage yet so it's nice not to feel so alone! Much love x
  19. brioni

    brioni Registered User

    Apr 19, 2017
    This is my first post. My wife, who is 81, was diagnosed with late onset AZ at the beginning of this year, although the symptoms had been manifesting themselves over the preceding 2-1/2 years. One of the problems I have, which is taxing me particularly at present, is not knowing how best to handle her hallucinations/delusions. For example:

    1. She quite often says that one or more people come into our bedroom at night, (around the time that she has first gone to bed) and this frightens her. I tell her that this is not so since our front door is kept locked and that is the only way that anyone can enter our apartment, and that she and I are the only people here. After a few repetitions this usually calms her.

    2. She very seldom recognises me as her husband (we have been married more than 50 years) and seems to regard me more as a friend who is always around; however if something out of the normal pattern occurs she relates these to different versions of me. If we have an argument she blames this on “that nasty old man who was here and said …… or argued with me…...or shouted at me”. If something goes quite well she often credits this to “that nice young man who was here and did…or said……..” I generally respond with an “Oh yes” or “Did he” comment and let it go at that, although sometimes I have said that there was/is no such person here.

    3. When we go out somewhere in our car, she will often think that someone else took her or brought her back home. She will ask, “Who took me there?”, and seems surprised when I say that I did. After some longer journeys she has asked, “Who was that man who drove me home and says that he lives in our building; isn’t he your friend?” Again, I told her that I was the person, not someone else. This hasn’t always convinced her.

    From the other posts I have been reading here (and thanks to all of you) it seems that the advice for dealing with these situations (particularly No.2 above) is to play along with this, and not to deny the existence of those other doppelgangers. However, I am less sure about the way I deal with the other two situations and any help would be appreciated.
  20. mcfad

    mcfad Registered User

    Aug 2, 2017

    Hi Brioni, welcome to talking point. As you may see I'm quite new to all this myself but have already found it a great help for info and support. I'm sorry to hear about your wife. It sounds like you are in a similar position to my dad, also married for 50 years. It's harder for you because you are your wife's main carer and there all the time but I've found the only way to manage my mum when she "can't find" my dad is to distract her or change the subject. It can go on for a while though. My mum seems to have got to know instinctively that looking for her husband upsets my dad and because she likes him even when she doesn't recognise him will say that she'll put her phone away (trying to phone my dad when he's right there with her because she can't recognise him) if he asks. With the other issues I think all you can do is try to reassure your wife. It sounds like you are handling the first issue well. With the third I would maybe try "I'm not sure but I'm glad you're home now" then maybe try to distract? It's very hit and miss though - I sometimes feel mum's personality is too strong for techniques like this! I wish you both well. It doesn't feel like a fair end to such a long marriage, I'll be thinking of you

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