what do i do?

Grannie G

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Apr 3, 2006
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Kent
You`ve got it coming from all angles haven`t you dear Poppet.

I hope you`ve the strength to get through the coming months. Remember there`s always support for you on TP.

Love xx
 

poppet

Registered User
Aug 3, 2007
70
0
oh yes indeed...

i have the strength because you have to dont you?

we dont have much choice do we?

we love our 'loved ones' and that is why we do this...

my bil phoned today and we discussed day centres as a result of 'my report' back after his hols...i felt like we are all begining to 'sing off the same hymn sheet'...hurray!!!

bil phoned mil as well...to be told she and my hubby had had a falling out and that we (myself and hubby) were buying a house...if only!!!

well looking forward..apprehensivly (sp) to tomorrows appointment...wish us luck!!!

poppet
 

jenniferpa

Registered User
Jun 27, 2006
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We'll I definitely wish you all the luck in world Poppet - you deserve it.

Take care
 

poppet

Registered User
Aug 3, 2007
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firstly, can i say thank you to all those that have supported me though my time on tp, it really does help to know i can let off steam and / or get advise.

so the results of mil mri scan showed nothing of interest/concern. they seem unsure of whether she has LBD but havnt ruled it out. we are finding the whole assessment system a struggle as there are so many people to deal with and this takes time and can get confusing. why i wonder do they not have one person that can coordinate all aspects of this? anyway thats another story...
mil has got aggressive on a couple of occasions with my hubby...i think she thinks he isher hubby??? the dr she saw for the results has prescribed Quetapine ...which is an antipsychotic drug...she has been to stay with bil for a few days and he got the prescription...said the first day she took it in the morning and was asleep for most of the day...he has told her to just take all her meds in the evening (to reduce complication) ...they tried this and this seemed to be better as she had a good nights sleep and was alert in the morning...if anyone has knowledge or experience of this drug i would be interested to know about it.

the way forward is still as clear as mud...much to my frustration this dr (who apparently is one of the top in this field) has told bil that we must 'set mil right' when she has these hallucinations. it feels wrong to do this and we have no support network. does anyone know what we can do about finding some one to talk to that has the experience and medical knowledge for these situations?

my hubby is lost as to what he is supposed to do as am i. he broke down last night and poured out how he felt...this was good for him to do this but i could not help him as i do not know what is right...i just had to say in the meantime we shoudl just do what we feel is right at that instant. instinct always plays a big part in what i do and i dont think its a bad thing to follow if in doubt.

so really i dont feel we are any further on...a return appointment has been made for about 4 weeks time so we will play the 'wait and see' game a bit longer...

in the interim....movements towards grab rails, shower seats, care, money etc are being made...

love and best wishes to all
poppet
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
poppet said:
this dr (who apparently is one of the top in this field) has told bil that we must 'set mil right' when she has these hallucinations. poppet

I know what this doctor means poppet, but He could have explained it a bit better to you.

If the hallucinations are harmless and not causing distress to your mil, I`m not saying encourage them, but just let them go, try to distract her or play it by your very sensible ear.

But if she is frightened by them, as my husband has been when he`s hallucinated, then you need to reassure her that it might have been a dream or words to that effect.

I do hope you can both get more help than you`re getting now.

Love xx
 

alfjess

Registered User
Jul 10, 2006
1,213
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south lanarkshire
Hi

Just to say that my Mum was prescibed quietapine and it was (almost) effective for about a year.
When I say almost, mum was certainly calmer than before the quietiapine, but eventually the med had to be upped to twice a day, then after about 4 months in care, she was becoming more agitated, still taking quetiapine, so the Phyco Geriatrian said she was in torture and changed her meds to respiradone.

At the moment we don't know if the deterioration, in Mum's condition, is due to respiradone or another stage of dementia, so respiradone has been stopped.

I'm finding out that everthing is trial and error and it is a fine balancing act where medication is concerned

Take Care

Alfjess
 

Nell

Registered User
Aug 9, 2005
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Australia
When my youngest sister was a tiny tot, she had a fear of "insects" under her bed. It was a childhood fear as there were no insects under the bed, but it was very real to her.

My beloved Dad would use a thong or a slipper to "kill" the insects, making very loud slapping noises and saying with great vigour "Ah! got you!". After about 3 or 4 of these, he would reassure my sister that the insects were all gone and peace would reign.

It seems to me that if we were to take a similar approach (depending on the nature of the hallucination) to our loved ones with dementia, it could be more reassuring and more successful than trying to put them straight.

I'm sure that the psychiatrist would say I was "colluding" with the illness. But in the case of dementia, where the sufferer will never get well, is that such a crime???

As always, this is strictly my own opinion and not backed up by any science - medical or otherwise!! :)
 

Margarita

Registered User
Feb 17, 2006
10,824
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london
the way forward is still as clear as mud...much to my frustration this dr (who apparently is one of the top in this field) has told bil that we must 'set mil right' when she has these hallucinations. it feels wrong to do this and we have no support network. does anyone know what we can do about finding some one to talk to that has the experience and medical knowledge for these situations?

Just been catching up with this thread reading posts when you ask

does anyone know what we can do about finding some one to talk to that has the experience and medical knowledge for these situations?

Can you not ask your doctor to do a referral to allocate your MIL to the mentail heath unit so you can have a CPN ?

I find my brother CPN very helpfully in understanding hallucinations and my brother anti psychotic drug. MIND is also have a wealth of information on anti psychotic drug and are very help full if you just ring them up with any concerns you are having .

CPN tell me that they are real to them (hallucinations) as you and me in person , not to humour them about it , just tell them you can't see them like they do , ask what they are seeing talk to them about it , what are they saying . don't get angry or frustrated about it with them , as that can antagonise them and they can get violent , aggressive , if that happen just act cram ( even if you don't feel it pretend ) back of and move out of the room. if it got to the stage that you felt they where in danger to them self all those around them call 999. not saying its going to get to that stage , hopefully when medication kick in it well stop the hallucinations.

when it happen to me , my brother had a relapse I phone NHS direct for advice , who told me to phone 999 for me , telling me that I should always phone 999 next time


must say I found hallucinations very scary, hard to get my head around it when my brother had an episode of them , that why I find CPN very helpful also came in handy in understanding what is happening with my mother and her AZ.


the support out they its just knowing how to go out getting it, if MIL or you BIL do not like the involvement of the mental heath team , just ask for advice from a CPN , just pop into you local hospital who could have a mental heath unit , asking them you would just like some advice from a CPN.

Sorry to read about your breast cancer , must of been shock for you both xx
 
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blue sea

Registered User
Aug 24, 2005
270
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England
Dad was prescribed quetiapine for a while to decrease agitation / aggression. It was very effective for a few months, much more so than other drugs they had tried. If your mil has any dementia related illness, then you will probably find that medication has to be reviewed quite frequently. There is quite a lot of trial and error involved. After a while the drug's effects are less successful and /or the nature of the presenting symptoms change. It's a case of balancing out benefits and side effects. Having said that, the right medication at the right time can make all the difference in alleviating some of the worst symptoms.
It will be easier when you have a definite diagnosis. 4 weeks is along time with this sort of illness so I agree with the earlier post, asking for referral to a CPN might be really helpful to you as a family. Syvia's advice about responding to hallucinations is spot on for dementia related delusions - might be different for other mental illnesses, don't know. Gald your husband has opened up about his fears - always better to share your feelings together.
Blue sea
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
might be different for other mental illnesses, don't know.


Now that is food for thought , I don't know ether .

I just got my advice from my brother CPN as my brother has schizophrenia . I have been with my brother CPN and mental heath social worker in a room with my brother , while my brother taking to someone that is not they and CPN all cool about it , asking him what the person telling him excepting it for what it is just a hallucinations.

must say it was a relief to see to people working in that field having the understanding of what is going on , because I never till , they explained it to me what is happening

yes Syvia's advice is good
play it by your very sensible ear.
 
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poppet

Registered User
Aug 3, 2007
70
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thanks for all the replies...

bil told us that the first day of taking meds , mil sleep nearly all day...she is now going to take them at night...as you said ...trial and error.

will suggest to hubby that we approach the gp for referal for a CPN.

the hallucinations...are not really frightening but are just making mil frustrated and at time angry because the people (usually 'the boys/mum and dad') dont do anything around the house to healp her. she then gets tired doing all this cleaning and cooking etc...

i feel that i just need to use my own judgement depending on what mil says is going on at any one time.

poppet
 

poppet

Registered User
Aug 3, 2007
70
0
hi all, haven't posted for a while...so its a long on to get it all off my chest:eek:

progress on mil is...bil and hubby are becoming frustrated with all the usual stuff that i was trying to point out:) great! at last they are begining to sort stuff out as they can now see what i see. this is such a releif for me. unfortunately (isnt there always a 'but') this behaviour is only seen because her condition has worsened. she was prescribed medication to help with the hallucinations by the dr/specialist. these are not helping at all. she will be going back to see him this week so will wait for progress on that. my hubby is going along to the appointment with mil and bil!!! we have put up numerous posters to remind her to turn off the cooker, close and lock doors, take keys with her etc. on top of this we had a period of time where she was so confused with days/dates/ time so we took her calendar away along with the vast amounts of paper which had things she needed to remeber on. but she couldnt remeber them so kept writting them down! we have had phone calls at all times from very early morning to late evening:( she looks tired alot of the time but still seems to sleep alot. a while ago bil got mil a talking clock which she states is often wrong! and a pill box which we now try to fill up. i say try as she has this filled the takes the wrong amount anyway and then comes round demanding her pills.she needs to be taking them but this system is clearly not working. we have lined up a variety of services to try and help, physio for a walking aid, grab rail in shower is installed, meals to be arranged soon, and a care assessment to be sorted. the latter is by far the most important to help with this medication issue. any ideas anyone? if we get a career in to provide a med prompt how do we stop mil taking other pills?

had a funny one about the hallucinations recently...mil came round for sunday roast (yum) and we werre talking when the subject came up. i asked her if they talked to her or if she talked to them. she reported that they did not talk to her and that she had stopped talking to them...she now shouted at them instead!!! i can just picture her yelling at the sofa...funny but not funny:(

the hallucinations is an ongoing problem where she continually cooks for 'them' and gets frustrated with 'them'. well i b****y well get frustrated at how we have been told to continue to point out that they are hallucinations. see tells health workers that she knows that they are hallucinations but actually i can see she doesnt know...:mad: actually when i went to the gp with her recently, she sat there and told gp a whole load of stuff that simply wasnt true.:rolleyes: so i sat there troughout the appointment either contridictiong her or doing so discreetly.

all this is taking its toll on my hubby, he seems so worn out by this. my own mum has had her surgery for breast cancer and should get the full results this friday. she is doing well physically. my aunt took an overdose on thursday of last week and is on life support and every major organ supported with machines. i feel so awful about this as not only is this so sad in itself but i feel for my mum in her state and the i feel angry for the action and the timing. the that makes me feel guilty. then i have my five kids, house oh and a final year at uni to complete...oh i forgot ...the family car has now gone up the creak in a big way...anything else i wonder...i keep thinking one thing at a time...and there are definately those in worse situations than us...there is hope with all of this...its just mmminadequatley expressed as a bit tricky...

poppet
 

poppet

Registered User
Aug 3, 2007
70
0
on my last post i spoke about mil and how she doesnt seem to realise that what she experiences are hallucinations and not the real thing.

just had an interesting visit with the physiotherapist. she was very good with mil. pointed out things that i saw as a problem eg the numerous rugs that seem to be apearing in the house etc... she extended her scope of conversation to address all aspects of mil care and well being. she did not mentionthe hallucinations to mil so i am not sure if she was aware of them. she did ask me to undo a bottle of bleach while i was there, she said she keeps asking her 'dad' to do it but he just ignored her:rolleyes:

anyway after the appointment, mil and i chatted about various things...seeing the psych/gereatic specialist...yes i have finally found out his title!!!:D she said she needed more of the tablets he had prescribed...i said they weren't working so he probably wont give her any more...she said they were working...i said well your still cooking and seeing 'them' aren't you? she said 'no', i then talked about various things that had happened recently that couldn't have happened. she just couldnt accept that there was anything in what i was saying...she thinks all what she sees is real and then says she doesnt hallucinate any more:eek: she also is able to say so very convincingly to health care workers...a bit of a problem i suspect:rolleyes:
 

Grannie G

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Apr 3, 2006
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Kent
poppet said:
...she thinks all what she sees is real and then says she doesnt hallucinate any more:eek:

I believe hallucinations are real to those who experience them and only hallucinations to an observer.

So when your MIL isn`t hallucinating, she thinks `they have gone`...............until the next time.

No matter how much you discuss, and how much you try to explain, I regret you`ll never be on the same wave length.

Sorry.

Love xx
 

poppet

Registered User
Aug 3, 2007
70
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i agree!!!

its just so hard to do what i have been told to do when it goes against what i feel...

i dont think that i will bother being compliant anymore...its just too hurtful:(
 

lizabeth

Registered User
Oct 17, 2007
2
0
london
keep a creative approach

my Mom has lewy body and unfortunately for us we get the most emotional form of dementia. I am a very creative person and in my experience if I could create a closure - calmly to her hallucination she seemed fine to let it go. These visions are very real to her so I might say that is your friendly cat you see outside. If she thinks for instance a man is hovering outside and really it is a parking machine I might say oh it looks like a man but I think it is just a machine all is alright. I might even go out and ask it to leave. As long as thes hallucinations do not upset her be brave enough to enter them and help stear her out as and when needed. You can always use you sense of humour also. key is to not let the hallucinations scare you.
 

Trich

Registered User
Aug 16, 2007
31
0
France
LBDementia

Hi Poppet,
My dad was diagnosed with LB Dementia when he went into hospital after suffering mini strokes while living alone at home. Prior to this we all knew something was up but it was like we were all frightened to face up to it. Dad used to see family members who we knew could not be there. He had visitors who like your MIL wouldn't talk to him and seemed to cover their faces with cushions. My phone calls to him would totally freak me out when he would describe vivid tales of crying children in his room and one boy who tried to knife him! I tried to put it down to being nightmares because I didn't have any knowledge of dementia. One day he asked if you could see ghosts during the day! He started to call his visitors spooks and goolies but he wasn't frightened of them. Eventually he was living in his virtual world more than the real one and so we had started the process of getting it investigated when the mini strokes brought everything to a head. He was prescribed Quetipan which I was worried about initially but have to say that after some agressive behaviour initially he calmed down. We all have our own way of dealing with things and I now know that what dad sees is real to him so why upset him by saying that it's not. If he thinks the man in the opposite bed has built a volkswagen out of plastic bottles then I agree that he is a clever bloke! I now know why he doesn't bother with tv much anymore because I think that his 'virtual' world is much more interesting. He still amazes me with the things he comes out with and some of the comments are so unexpected that you just have to laugh. Apart from the odd hiccup when illness interrupts the medication it seems to be working OK but I am always waiting for the phonecall! Dad is now in a nursing home and I feel so much better that he is being looked after. It was really worrying when he was at home and I can understand how worried you must be about your MIL. You have had more than your share to cope with and I do hope that life is kinder to you in the future.
TrichX
 

poppet

Registered User
Aug 3, 2007
70
0
thank you so much for your replies...it really helps top know people understand some of what we are going through...

today was interesting by all accounts

hubby and bil had some 'experiences' of how bad mil was prior to going to the dr today...very useful to see that and acknowledge that together, i do think with me being back at uni, it has helped them to see things more clearly.

they have a hard time of it...after all it is their mum...i just care too and want the best for her...

anyway ...getting side tracked as i do!!!

dr said he would up mil medication ...also quetipan...and review in a months time...he also said that as far as dealing with the hallucinations...he recommends the touch n talk technique but if we feel there is another way of dealing with them then of course we must do what we feel is right at the time...i think that is a better course of action. each episode can be dealt with according to its own merits.

i am pleased they went together as i think it made things more real for all involved to acknowledge that mil is now, as someone else put it, 'living more in their own world than her own', she does not feel the hallucinations are real cause to her there not hallucinations but the 'others' are still theere giving her grief!!! she is certainly not as aggitated although she still gets frustrated by there lack of help around the house and the food that gets left after shes spent all that time cooking:rolleyes:

i am also trying to push for getting things like the care assessment doen asap...just so that her medincations can be prompted...other stuff to but thats not quite so important...

onward we travel:)
poppet
 

poppet

Registered User
Aug 3, 2007
70
0
ok...mil has been away to stay with a friend for a week. i spent alot of that time both being grateful for the break, but also worried about this friends ability to cope with mil. i was unsure how she would be for this length of time as well. she apperently was very confused according to the friend but they had a lovely time. immediately on her return the usual issues have arisen...phone calss about 101 different things, checking and double checking them, then immediately forgetting them...

had an email from bil today, she had mentioned in a phone call about going to school today but found she couldn't use her bus pass in peak times. oh dear...bless her.

attendance allowence through! so we can start to organise things to help mil. it was interesting to hear my hubby note how we need to be fairly slow about implementing these things so as to reduce the amount of new stuff we throw at mil. i felt he had a valid point there!

its a start anyway...baby steps i think all the way!!!

poppet