1. poppet

    poppet Registered User

    Aug 3, 2007
    70
    hello all! i am a new member and my mother in law may have lewy bodies dementia. the most significant aspect of her condition is the very realistic halucinations she has. they cause great distress to all around her and on frequet occasions to herself. she is still in her own home, no care is provided as she is very independent and does not and would not want that. my issue is that the health professional assessing her is advising us that we should be upfront with her when she is experiencing these 'episodes' and tell her they are not real. this is becoming increasingly difficult and distressing as many of the 'people' are deceased. can anyone pass on any practical advise as i feel quite isolated and distressed as i have the most direct contact at this moment in time. how horrible to have to keep telling someone their loved ones have passed away and to see her cry.:(
     
  2. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi Poppet

    My Mum may not have experienced such vivid hallucinations as your MIL but it became clear a few months ago that, while I was at work and she was on her own, Mum was kept company by all kinds of people in her imagination. She would tell me all about them and what they had been doing. I tried to explain to her that they weren't really there by saying that 'her memory was playing tricks on her' but found it very hard when she asked for family members who had died many years before. I did remind her that they were gone but found it very upsetting to have to do this.

    In the end I stopped trying to swim against the tide and just went along with what she said just as if she was talking about real people and events. When she asked me where they were I would just say that they had gone back to their own homes. Mum would be cross that they hadn't said goodbye so I told her to tell them off the next time she saw them. This approach has worked really well and has removed those awkward, potentially upsetting conversations. Mind you it can be tricky to make any sense of what she is saying when it involves people from long before I was born or characters that she had seen on the TV!!

    Does it help during her episodes if you distract your MIL long enough so that you can say something along the lines of 'They've just gone home' or 'They've had to pop out for a while'?

    One thing is for sure, whatever you find to say to get through these difficult situations, your MIL will probably not remember so it is worth trying different approaches until you find one that suits.

    Liz x
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Poppet, welcome to TP.

    It sounds as if you have some problems with your MIL, and it sounds as if you won't be able to leave her on her own for too much longer.

    I can't understand the person who told you to contradict her when she 'sees' people. This goes against recommended practice. The best way is to go along with her, pretend to believe the people were her, but have gone.

    Certainly you shouldn't be telling her repeatedly that people have died, this is causing her so much unnecessary distress each time.

    Lizzie has the right idea,


    Well done, Liz, you're exactly right.

    Poppet, just do what you can to keep your MIL calm and happy, you won't convince her the people weren't there, so there's no point in upsetting her.

    I do think you should be investigating getting some support, though, you shouldn't be having to cope without help from social services.

    Good luck,
     
  4. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Would agree with other posts. Wondering what the status of the health professional is? Is s/he qualifed and experienced in this specific illness?
    Blue sea
     
  5. poppet

    poppet Registered User

    Aug 3, 2007
    70
    thanks for the replies, yes on occassion when i have been to emotionally drained to deal with the confronting bit, i have managed to bypass the subject effectively. so what about when she makes food for them, goes looking for them round the streets (wanders at night too)? also we have an issue with home security, she leave doors unlocked all night and complains that she is waking cold but swears blind its 'them' leaving the house unlocked, tv on etc...i am worried it will one day be the cooker or something. the gp spoke to us and basically said that it will either mean a home (which is a no way move) or a crisis incident which will no doubt force her sons hands in the matter. i know her parents had dementia of somesort and as soon as they where placed in a care home they deteriated fast and she does not want that for herself. as she has many lucid moments her sons (and i for that matter ) are reluctant to place her in a home at this stage. aslo the issue of care in the home... she can clean, shop, do housework and cook for her self so social service will not get involved yet. yes we could pay for it but she again does not want it...oh dear what to do?
     
  6. poppet

    poppet Registered User

    Aug 3, 2007
    70
    blue sea...HP is a specialist in the feild...sorry cant remeber full title but was refered to him by GP...she is awaiting MRI brain scan but i am not clear as to what that is going to be looking at...her eldest son passes on info regarding the appointments and obvioulsly has not told us what thats for...still awaiting a final diagnosis. days, months, times of day are also confused, even down to the difference between day and night? its dark ...how can this happen...i dont understand...
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Poppet, I'm sorry, but when the GP says there is a security issue, then the time has come to cansider the future.

    Have you had an assessment by social services recently? If not, you should ask for one urgently There is more at stake here than being able to cook and clean. The sons need to consider, not just that she doesn't want to go into care, (most people don't), but her welfare and security. She dosn't sound as if she is safe to be living alone.

    I'm sorry to be so blunt, and I hope I haven't upset you, but I'm quite concerned for you all.
     
  8. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    My reply crossed with yours, so have started again! Presumably the HP is part of the psychiatric service, but worth checking this. Usually a CPN (community psychiatric nurse) is attached and they can provide advice and support. It is very common, in all forms of dementia, for the person to start to lose the abilty to differentiate between night and day. This does not get better, I'm afraid. Once this happens the person really needs 24 hour care. This can be difficult to provide in their own home. I suggest you gen up on the fact sheets on this web site as the more info you have the better you will be able to assess the advice you get from the professionals. Thinking of you. I know how stressful this situation must be for all the family. Keep us posted.
    Blue sea
     
  9. poppet

    poppet Registered User

    Aug 3, 2007
    70
    skye- sry...it was me that raised the issue of security not GP, but you are right. my problem is getting her sons to recognise and accept that she needs care...i have spent months trying to highlight this issue but neither of them wants to 'see' that she has got this far...i dont want to be the DIL 'throwing her into a home' to get her out of the way...far from it...i sit here in tears not nowing what to do for the best. she will no doubt battle going into any kind of care.

    i need to seek advice on how to approach the sons (which include my husband). also which fact sheets do you mean?

    thank you you are being helpful so keep it coming
     
  10. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi poppet
    Re fact sheets - go to the very top of this page, on left side, and click on 'factsheets'. This will bring up the list and you can then click on the ones that seem most relevant. There's a huge amount of info there. Bear in mind that your mil hasn't got a definitive diagnosis yet, so keep an open mind. Occasionally symptoms such as hallucinations can have other causes. Hard to advise regarding your problem in getting her sons to accept the seriousness of what is happening. I'm sure it will be easier once all the tests have been done and the professionals get more involved.. In the meantime, perhaps one of the sons could spend a night at your mil's house to assess the risk???
    Blue sea
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Poppet, if you look at the top left of the page, there is a i Factsheets sign. If you click this you will see a list of factsheets which you can print off.

    This one is about Lewy Body dementia.

    I suggest you keep this thread running, and show it to the sons. You can print it out if you click Thread Tools at the top of the page, and click printable version.
     
  12. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    #12 Lucille, Aug 3, 2007
    Last edited: Aug 3, 2007
    Hello Poppet

    Sorry to hear you're having a tough time.

    I would challenge your GP and ask for a proper assessment. My mum's GP told me that he couldn't do anything until she was a danger to herself or others. What utter tosh! I insisted we see a consultant (I didn't find this easy as by this time I was in a complete state), but I'm glad I did. Mum now has drop in care twice a day, an OT and I'm currently trying to get her a support worker.

    Your MIL sounds like she is a lot further down the line than my mum, but even so, you can't and should not be expected to do it all on your own. The sons, and I'm going to be a tad blunt here, ought to get their fingers out. You really are doing as much as you can but you can't do it on your own. I know a lot of people go into denial. For sure, my brother has little input to my mum's care and as long as she picks up the phone when he calls, he assumes all is well. Mum says it's a man thing, but I don't agree. There are loads of lovely blokes on here caring for people. :) Perhaps the fellas just don't realise how bad things are for you.

    See if you can sit down with hubby and BIL and have yourself armed with some info off here. Perhaps when they realise how tough it all is for you they will become more involved in supporting your MIL and you. I know it's not easy, Poppet, but your MIL needs help from the professionals (as well as her family). She is lucky to have you as DIL, so don't feel guilty; you're doing as well as you can.

    Please post back and let us know what your situation is. It's much better when you can talk to friends here on TP; I've found it a wonderful place.

    With best wishes.

    Crikey, I've just seen that Hazel suggests you show it to the sons ... hope they're/you are not offended by my remark!
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hello Poppet,

    This lady sounds very much at risk.

    It`s OK to say she has `many lucid moments`, but what about the other times.

    My husband does not hallucinate, he just gets confused. He has many lucid moments, would be horrified at the thought of going into a care home or having anyone in to help him, but I am with him 24/7, so he is not at risk.

    It sounds as if none of you want to upset her, yet you all fear for her safety. I would be advised by her GP, as I feel she is an accident waiting to happen.

    I`m really sorry you have such a heartbreaking problem, but someone needs to stand firm.

    Take care
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland

    I don't think there's anything in your post that could offend, Lucille.:)
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Aug 3, 2007
    Last edited: Aug 3, 2007
    I can get like that , because being at home all the time with my moher i am not connecting with other people .

    when your dealing with an illness that is very hard to understand no one supporting you in understanding only reading up on it on the net , i can feel more unconnected with people , becoming isolated .

    I Do hope your family seek outside help , with me it was a relief to talk to CNP , worker from AZ day center dementia nurse , all referral from social worker.

    social worker could get you referral for technical assistant for gas cooker , lock in house . contacts with groups in your area , that may have the same condition as your MIL , so can advice you also what they do in those situation

    who is the health professional advising you , just wondering if you already have a CPN On your MIL case
     
  16. poppet

    poppet Registered User

    Aug 3, 2007
    70
    what can i say...but thank you will keep you posted...
     
  17. poppet

    poppet Registered User

    Aug 3, 2007
    70
    blue sea- when we spoke to the GP she siad that this HP (the one i cant remeber what his titile is!) is dealing with MIL insteat of the psyc nurse at this stage.
    have decided to show husband this thread ...sorry darling if this is harsh words to hear... i just dont know how we can acheive the best for her taking her best interests into account as well as what she might want?
    love youxx
     
  18. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My Mum went into a Care Home after she started having hallucinations and confusing night and day. She was very happy there, and the routine and company helped her to stay focussed.
    Later she had to go nto a Nursing Home after a fall, but she would have been even more likely to have a fall in her own home, as she became very unsteady on her feet.
    Mum had a heart attack and died suddenly and unexpecetedly two months ago.
    Even if she hadn't had fallen two years ago and had still been in her own home, she could still have had the heart attack.
    Once people start having hallucinations, they seem to need company all the time and can get very frightened when they are on their own.
    Kayla
     
  19. poppet

    poppet Registered User

    Aug 3, 2007
    70
    kayla, thank you and i am sorry to hear of your loss.

    i spoke to my husband and showed him the thread. although he appreciated why i did this he was distressed at the thought that he was inactive in his mums care. so i think i need to put the record straight. MIL is very fortunate having mainy close neibours which over the years have become friends. they all look out for each other and being in such close proximity is very reassuring for us. they have all our phone numbers and we reassure them frequenty that we do not expect them to 'look after'mil but if they have concerns can call us day or night.
    my BIL is semi retired and comes from a financial background therefore she feel secure in allowing him to 'run' that side of things. because he has more time than we do he also deals with the health care appointments, traveling down to stay over night ...so as you can see someone has stayed over frequently to no huge highlight of issues raised before... my husband works a 12 hour day but still phones mil several times a day almost every day. he if you like takes on all the practical stuff she needs sorting. we take our children round as often as possible, i take her shopping and to appointments locally, we are all involved in some way.

    i guess i feel in the thick of it because i am home looking after my children at the moment (usually studying at uni). on some days i seem to deal with several 'confused' phone calls a day. if i go round i see the issues raised and have to deal with the hallucinations constantly.

    can anyone advise me on situations where she phones up and asks where is ??? (this could be any one of us, myself , my husband - as either a child or adult, my children). she frequently does this demanding to know where we dissappeared to?

    thanks for all your help. it has been very comforting to know i am not over reacting in my mind and that she DOES need the care i beleived she needs. my husband agrees that something needs to be in place but feels unable to do so untill there is a definative diagnosis.
     
  20. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Imagining people being there

    We had this with my mum, at first I said "No, you haven't seen Dad, he is dead", "no your mam and dad can't have visited, they've been dead for forty years",. and eventually realised it was much kinder to just gloss over the comment. "Have you seen your dad" "No, not today", end of question. Have my mam and dad been? No, not recently. It works.

    Much love

    Margaret
     

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