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Mother not recognising her husband

Discussion in 'Recently diagnosed and early stages of dementia' started by Mandy76, Jul 25, 2019.

  1. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Hi all
    My mother was diagnosed with Dementia with Lewy Bodies a few weeks ago. She was basically a normal person until the end of April when she started not recognising my dad. One day she was normal, then the next day it was like she developed dementia overnight!

    The main problem is that she thinks my dad is either her own deceased father or one of her two deceased brothers. She is not hallucinating them, she is seeing my dad as them. Then when she comes back to reality, she is wondering where they have gone, and she's hunting round the house looking for them! The biggest issue we have is that when my dad is one of "the brothers" she is looking for the "real" dad. She doesn't realise that the brothers aren't really there. She is freaking out looking for my dad when he is sitting right next to her.

    She is hysterical that he isn't in the house and won't go to bed until he gets home, but he's right there! No amount of trying to convince her works. We've tried having my dad go out them come in the front door and say that he is back, but it doesn't work.

    My poor dad is at breaking point with this. He has lost so much weight and isn't coping well and there is not much NHS support out there. We've not even seen a consultant yet, just two short visits from a memory clinic nurse. I had to have her hospitalised at the weekend but they sent her home after one night saying that she isn't physically ill so won't benefit from being on a ward.

    Has anyone any suggestions as to what to do about this? Her other symptoms are manageable at the moment, but this misidentification syndrome is making a nightmare situation even worse. Sometimes she thinks he is an impostor and she becomes terrified and it's hard to convince her that he's not. They are in their late 70's and I am in my early 40s. I don't live with them but I am staying with them just now as they need my support.
     
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,494
    Female
    England
    Welcome to DTP @Mandy76.

    Two years before my husband went into a nursing home he lost me as his wife. It was extremely upsetting and difficult to accept. I realised it was no good trying to convince him it was me sitting next to him so to keep him calm I’d just say Jay has popped out she should be back soon and then get him to do something with me to distract. He never got unduly anxious though sometimes he would go out of the room and call me from his mobile. I’d tell him I wouldn’t be long and it amazed me he recognised my voice but not my face. When I thought about it our voices never seem to change but unfortunately our faces do and in his head I was probanpbly 30 years younger and three stone lighter.

    He was alway content to be with me as ‘ the lady who looked after him until I came home ‘ so as long as he was comfortable with me and trusted me then I could manage.

    My experience was not so complicated as yours as there were no other women to complicate the problem. The only advise I can give is don’t try to explain her mix up just try to explain your Dad’s absence and see if your Dad can always approach her using his name, e.g. ‘ hello (mum’s name) it’s only me (dad’s name) would you like a cup of tea, or words to that effect.

    I did turn Into his mother when he had been in care for a while. His face lit up when I walked in and sometimes I was Jay but mostly his Mother.
     
  3. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Hi Jay - thanks for responding. It's such a terrible situation. What a dreadful time you must have had. Did he recognise you sometimes or did he always think you were the "lady who looked after him"? My mother will just be sitting there watching TV or chatting to my dad, when she suddenly switches into this alternate state, sometimes mid sentence, and she begins to address him as though he is a visitor in the house, like telling him things about the neighbourhood or offering him tea, the way she would a visitor, and that is how he knows that she has switched into her state of thinking he is someone else. He can't always tell who she thinks he is, but it's always one of the three - her father or her two brothers.

    She can be like it for hours and hours on end, then eventually she will re-emerge and is asking where the brother/father have gone. She is distressed by them being there because she doesn't like the way that they "turn up unannounced and just sit and sit there".

    It's not like she has forgotten my dad or doesn't recognise him when she is not in the altered state, but these episodes are every day, several times a day. It's worse late at night when she can't find my dad and won't go to bed until he is home.

    It's strange how your husband knew your voice but not your face. We have tried having my dad shout from the hall before he comes into the living room to see if she would associate the voice with him, but no, it doesn't work either.

    We just can't work out what triggers it and what brings her out of it. It just seems random.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    My husband always knows my name but especially when I’m helping with personal care will call me “Mum”. It’s very benign though and if he wants to call me that then fine.
     
  5. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,494
    Female
    England
    @Mandy76 My husband would sometimes look at me and ask if I was his wife. I’d answer yes and then he would say are we really married. I’d try to steer him away then because I knew we would be going round in circles.

    I didn’t find the voice/name bit difficult. I have a cousin who has lived abroad since she was 21 and she is now about to celebrate her 80th birthday. We talk on the phone every couple of months and sometimes video message. On the phone I can see her as the 22 year old her voice has not changed one little bit,

    I was always the ‘nice lady ‘ as he called me I never came back only on the phone. He was never worried where I was when he talked on the phone, I’d tell him I was shopping/having my hair done/visiting my brother and he would tell me to take my time and drive carefully. Then he would tell me where I was and when I’d be back. It was like living in another universe. Weird does not describe it.
     
  6. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Was he looking for the "real" you when he thought you were his mum? Or was he quite content that you were his mother?
     
  7. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Yes it is all so strange. I had obviously heard of dementia before my mother was diagnosed with it, but I always imagined it was in the late stages when they would start not to recognise people, mainly because they had forgotten about them. This was my mothers first symptom. We didn't notice much else wrong with her, maybe a bit forgetful but nothing that made us think "quick, rush her to the doctor". But we certainly rushed her there the day that she thought my dad was her brother!
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    I think he just felt looked after which triggered the Mum thing. In fact he called his own mother Ma and never mentions her or his father. I think he associates the older me with my own mother and he was very fond of her. John came from a big family and didn’t get the kind of attention my Mother gave him. I’m not bothered by it at all. Much bigger issues to worry about.
     
  9. GRIM57

    GRIM57 Registered User

    Mar 29, 2016
    10
    East Anglia
    My wife has bouts of not recognising me as her husband and partner of 31 years, it comes and goes and depends on time of day (sun downing), fatigue and meds. At 65 the issue we have had to come to terms with is The Mental Capacity Act 2005, Assessment, that stifles my ability to care for my wife at home, as we both wish..
     
  10. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Thanks to all who responded. Just an update - I am now being not recognised. She thinks I am her sister, or the "other" Mandy, not her daughter Mandy.

    So me and my dad are taking turns in being other people! Occasionally it is both of us at once, but usually one or the other. Then other times she is fine and knows us both.

    We have started her on Rivastigmine patches, she's been on it for 5 days so we will have to wait and see how it goes.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Once people with dementia stop recognising people close to them, Im afraid that it wont stop, but the Rivastigmine might make him less concerned about it.

    Watch out, though, because sometimes Rivastigmine can make people more anxious, so if it seems to suddenly get worse get back to the doctor who prescribed it.
     
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,973
    Suffolk
    OH didn’t recognise me a couple of times, at his bedtime and demanded to know where I was.
    ‘She had to go out, so asked me to look after you’ was my stock reply.
    When will she be back?
    At her bedtime. And he was perfectly satisfied.
    When I went to bed, he asked, is that you? And when I confirmed it was really me, he was satisfied and settled down.

    Weird!
     
  13. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    794
    Male
    Newcastle
    Sometimes my wife knows who I am and will introduce me as her husband to the staff and residents at her care home. Moments later she will address me by name and ask me where I am - Ķ where's K? I haven't been mistaken for anyone else just not seen as myself. Sometimes she says that we used to be married. This confusion has happened so often that it no longer bothers me. It is just one more strange thing amongst many. No solutions I'm afraid but very difficult in the situation described by the original poster.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    Hi
    Just re- read your first post.
    Who diagnosed your Mum with LBD? My mum saw the CMHT & had a probable diagnosis to be confirmed by the consultant.
    The Clinical Mental Health Team are worth ringing, memory clinic aka, l happily tell receptionists my life history to get to information on who might be able to help me! It has worked with getting appointments & moving forward, but is draining.
    Also emailing all concerns to GP, community nurse, memory clinic, social services gives you a paper trail & also helps all the different agencies link in together. It’s a role I have taken on, the GP is meant to be the link point but hey.... if I make myself a pest then I make myself a pest ..... it’s because I need to!

    Ring 111 for advice, a copy of your concerns will be recorded & sent to your Mums GP.
    It’s hours waiting for the ring back but eventually when you are at crisis point duty GP’s & adult social care will liaise.
    Also contact adult social care & keep voicing your concerns.

    I’m sure you have already done most of this.
    Let me know how things are
    (((((((Hugs))))))))
     
  15. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    It was the

    It was the consultant at the memory clinic that diagnosed her, even though he has never seen her. The memory clinic nurse visited her at home and did a memory test, then she went for a CT scan. Then the memory nurse came back and said that the consultant had reviewed her test and her scan and listened to the symptoms we described that the nurse took a note of, and concluded that it was Dementia with Lewy Bodies that she had.

    Since then we have had a few more visits from the memory nurse and she had a night in hospital when she went really delirious one night and I called NHS24, but apart from that, no other help. The nurse got the consultant to give my mother a prescription for Rivastigmine patches so she has been using those for about 6 weeks now. It's not made any difference - her mental state has deteriorated in that time.

    When I contacted adult social care, all they said was to take her to a day centre, but that is no good as she cannot be left without my dad and will be frantic. Also, she doesn't know or remember that she has a problem but is too aware to be taken to a dementia place when she doesn't know she has it, and would freak out if she knew she had it.

    We had a total nightmare on Friday night when both myself and my dad were "impostors" that had kidnapped the real us and were planning to do her harm. She was screaming and crying and snarling in hysterics and terror. She thought we were planning to kill her and dump her body in a river. We eventually got her calmed down but I thought we weren't going to manage and would have to call an ambulance.

    This morning she was in a state again as she didn't recognise my dad or the house and was going on as if she was living back at her parents home with all her siblings like when she was a child. My dad called the memory nurse and she is going to speak to the consultant to see about other medication that could be prescribed.

    But other times she is perfectly fine and she is not physically disabled or anything. She is fine in all other ways, the problems are all psychiatric in nature. She still goes out places and no-one would know there was anything wrong with her. But as soon as she is at home with just my dad or me, she goes into this alternative state where she doesn't recognise us or the house. It happens several times a day, every day.

    I can't imagine what type of help social services could provide - she doesn't require assistance with personal care and when someone visits she goes into hostess mode so would seem like nothing was wrong with her. My dad and me are the source of the delusions - not recognising us and thinking we are other people is the root of the problem. Then when she realises that we are the real us, she is upset that the other people have left without saying goodbye, and sometimes she is upset that they were there in the first place.

    I fear she will end up in a care home due to her mental state, even though she is physically fine.
     
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    Email the consultant with your questions & concerns. Cc in the GP & everyone else.
    Keep pushing for help as your Mums sundowning requires it. Adult social care needs assessment for your Mum & her carers ( you & your Dad) maybe required.

    Sorry that’s not a lot of help but what with drugs not helping then maybe you need to be a bit more forceful.
    Xxx
     

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