So bizarre !

[MrsTerryN]

Mum, at the moment, is really rude. She keeps getting angry because no one told her anything.
I never been there when mum has seen something. I have been on the phone when she has told me about dad's baby.
You really have to wonder about the little girl and the hospital though.


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[Tin]

similar happenings here, mum keeps asking where everyone has gone, as if a few minutes earlier we had a house full. Started talking a lot in her sleep and she tends to be very vocal when we come across people with maybe a weight problem, embarrassing, did this in chemist yesterday had to take her out of the shop and I tried to explain to her that she could not say things like that. all in all, she has become very vocal at inappropriate times.

 

[MrsTerryN]

The inhibitor switch has definitely been turned off Anne and tin
At this point I think I am pleased mum is too annoyed with me to go out beyond the nursing home with me.
She has told me she needs '5 mins away from me'

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[RedLou]

Do you all react differently to these behaviours/accounts?
My father has become disinhibited - when he was in his own home he kept insisting I, or my poor daughter and son-in-law, went in the loo whilst he was battling with his constipation, for example. It upsets his female friends who visit him now in the long-stay ward when he lies on the bed with his nappy open.
He has some mixed-up memories/delusions that are persistent. He is convinced he must get out of hospital to help in the hunt for Madeleine McCann, for example! He also has a whole fictitious account of how a carer pulled him over, called the fire brigade and had him admitted to hospital. I just go along with it now. I used to try to tell him the truth at all times. It seems pointless. He is now convinced he has not got dementia, that the hospital are keeping him for his money, (it's not private!) and that someone else's notes have been mixed up with his. I'm not quite sure how to deal with that one, because I can scarcely go along with it or it'll make him worse. He gets bouts where he gets angry with me for not getting him out of hospital in any case. I have now taken to telling him I'm doing my best but that I am very happy for him to talk to the doctors directly and argue his own case instead. He then says grudgingly, 'No, you can do it.' (Thanks, Dad.)
Sometimes I feel I'm just humouring this peculiar individual for the odd moment in which I get a glimpse of my old dad. A sudden laugh. A sudden momentary sliver of concern. & then usually, that makes me cry - because it throws me into mourning for that dad.
I said to my friend yesterday - his time has come; he should die. It's as if the hospital can stabilise his physical decline but not his mental, but why are they doing it? He has very little quality of life, only confusion and irritation. And I know it's only going to get worse.
Sorry - this is just a 'get it off my chest' post and not helpful to anyone but myself. On a more helpful note, I am finding The Chimp Paradox by Dr Steve Peters, which explains how the brain works and how personality works incredibly helpful. It's not so much that it helps me understand my father, but it helps me control my emotions.
Best regards to you all. Lou

 

[MrsTerryN]

Mum has a long term memory at least five years of dad having an affair.
The woman moved in, then brought her husband, then child and then a dog. She would ring me at odd times to tell me 'she was there' then you would ask her where is dad 'asleep' would be the answer.
I had hoped when dad died that particular delusion would also go. Unfortunately it didn't. About six weeks after dad's death and mums entry into the nursing home, she said I would have to make sure the baby was OK.
I worked out she meant a child of dad's. I actually convinced her that no child had been registered to dad except me otherwise it would be on his death certificate. She was OK with that.
Her lack of inhibitions I do encourage her to put more clothes on or pull up her pants, but if she argues so be it.
Similar to your dad's issues with the doctor I now just agree. Her current one is she wants to go to her old dentist who is an hour away by car.
She adamant I am not taking her. She has decided she will go by ferry. Have no idea how a ferry is the transport. I have said OK advised her there will be no cost because of xxx. In other words I have already told the surgery just to send me the bill if she gets there which highly unlikely.
As my husband said how will she even get out the front door of the nursing g home.
I did previously try to explain things but 'loves lies' which are brilliantly explained on here are just easier
Though having said all that I had a major dummy spit with my mother yesterday and told her to 'suck it up because her body was failing her not us'.
She took it OK but.... Ah well we all know it won't Las t.
Mums quality of life isn't good with dementia. In the 1970's my grandmother also had dementia and my mother told me she never wanted to have it and to remember to not give up my life for her because she wouldn't wish that on anyone.
I miss my mother she is long gone, though just like you Lou I sometimes see a glimpse of my funny sarcastic mother. Then the eyes glaze over and this strange person comes back.
Tp is made for getting it off your chest. I sometimes drive home from visiting mum composing in my minds posts for tp. It does help and I am grateful to the long suffering experts on her who offer sage and pragmatic advice


Ps thank goodness for the edit aka correct button

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[Ann Mac]

I've often wondered why this 'little girl' is so often visible at hospital appointments, Terry - very occasionally, its been a 'little boy', but mainly the girl - and always, always, Mil getting agitated because she is 'running off' up the corridor, or up the ward, or out the door. The last trip to A&E, we had just over an hour in a small ward whilst waiting for blood results, and one of the nurses there was absolutely fascinated by Mil, who repeatedly commented on this 'girl' running up and down all the time. The CPN has told me that there is a recognised condition, with some forms of dementia, where for some reason the hallucinations of children are constant for the person who has it, but it isn't constant with Mil - we can have 2 or 3 days where the little girl isn't mentioned, or we can have days where there are a dozen references to her in the space of a couple of hours.

I had the 'dummy spit' (do love that phrase!) with Mil, a couple of days ago - It wasn't the controlled 'firm and calm' instruction to go to her room as I refuse to discus 'whatever' she is going on about with her, which is my go-to last resort with Mil when she is being particularly unpleasant - it was a full out 'telling her like it is' spew No idea why I blew, it was just the usual couple of hours of nasty digs and accusations, and I flipped. It bought me about 40 minutes of peace before she started again - which was long enough for me to give myself a talking to and get my calm head back in place, at least

Haven't had the talking in the sleep yet, Tin, but like you, I've tried to explain to Mil that she can't say things 'like that' - and I get everything from complete puzzlement as to why can't she (she is only 'telling the truth'), through to her flatly denying she has said 'any such thing'

Lou, how I react/deal with all this depends on so many things at any given moment. I guess that I go with agree/sympathise, then distract and divert with the delusions and hallucinations, as much as I possibly can. Despite always thinking of myself as being an honest person, dementia has made me realise that not all lies are bad, and I don't feel the slightest bit guilty for using love lies if the situation calls for them. The priority is trying to keep her calm and stress free, and if lies work, then I'll lie. Having said that, add sundowning to the mix, and its all bets off, because she becomes so fixed on some delusions, that it really doesn't matter how I react - she is angry and agitated, and looking for confrontation, and nothing I can say or do will satisfy. I won't engage with anything she says (or at least, I try not to) and stick to a repetitive 'I'm sorry you feel like that, but I am not going to discus this now' - and I'll either tell her to go to her room, or I will leave the room. I speak very firmly, in fact its very much like the sternness you would use when a child acts up.

The other exception to agree/distract would be if she starts on the delusion that her son (my OH) is her husband - simply cannot agree or go along with that one, or even ignore it, as we have found that unless we firmly stop it as soon as she starts, it very quickly can grow into her saying inappropriate things, or acting in an inappropriate manner towards him - or to me, if she casts me in the role of the 'other woman'! This is an issue that causes my poor husband a lot of distress, its embarrassing and heartbreaking for him, so for once Mils feelings and her reality are not the priority. It is horrible for our children to experience, and I can assure you that being the 'other woman' is no darn fun either - so no messing with this one - she is corrected straight away, and we make it plain that she is wrong, and she has to stop - I don't think for a minute she always believes us when we say he is her son, but our reaction is generally enough to stop dead the invitations to 'come to bed, love' or anything else that she might say or do whilst in the grip of that one. Sometimes our response actually causes her to remember who he is, and she is so embarrassed or tries to say she was 'only joking', sometimes she stops, but sits and glares at us, or cries - as long as it stops the associated behaviour, then we just live with the dirty looks and tears. Once or twice she has made an outlandish accusation about one of us, or the support workers she used to have, claiming that she has been physically hit in some way - knowing 100% that these accusations have never had a grain of truth, when they happen (very rarely) we give a similar response to the 'husband' issue.

The lack of concern about being seen semi or completely undressed initially worried me for the sake of our kids. But, after taking advice from people on TP, I have been able to chill out on this one to a huge extent. The kids cope on the very odd occasion they are treated to an unexpected show, and when I encounter the lack of clothes, I simply cover her up with something along the lines of a brisk 'Come on Mrs - lets not scare the natives' (which usually gets me a giggle) and don't say anything else. No point - she really does not get the problem, all modesty is gone, and she is puzzled by others reactions if we even try to explain.

At Mils medical review, at the beginning of the year, I was congratulated on how well she is, physically, despite her many ailments, and praised for my care of her - and I felt a bit like I think you do, Lou - the glimpses of the Mil I knew and loved are getting fewer and fewer, most of the time I think her quality of life is something I wouldn't wish on my worst enemy. She is a confused, often scared , frequently angry and unhappy little lady, who cannot find much to be happy about and who hits out verbally at those who are trying to help, from frustration, fear and fury. Her dignity is fast going, if not gone - two nights ago, she wet the bed for the first time, and was completely unaware that she had done so - and I remember thinking that I was possibly doing her one heck of a dis-service, keeping her fit and well, when the kindest thing would be for one of her illnesses to carry her off quickly, and spare her this torture

 

[MrsTerryN]

Actually I just remembered mum does talk about children at the nursing home.
She says they run up and down and make lots of noises she tells them off but their parents live there as well.
In reality there are very few young children who visit the nursing home. She thinks that underneath there are families living there.
It is incredible what our relatives see/hear.
Mum just rang me to say 'all the others need me as a leader as there is no food and I have jus had my subway'
I tried to explain to her that it wasn't quite dinner time but she just got cranky because she couldn't go out and get food (?)..
I wonder what, if anything, she will remember tomorrow.
Mums short term memory does appear to have deteriorated

I agree Anne it is torture mum would be hating this.
She has said to me before she just one day doesn't want to wake up
I hope that happens for her


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[Owly]

These persistent and consistent hallucinations could well be MIL actually seeing earthbound spirits (ghosts).

Have a look at this book and read the reviews on Amazon.co.uk, and on Amazon.com where there is a longer and more interesting discussion on the reality of the beings that can surround and even possess us -

The Unquiet Dead

http://www.amazon.co.uk/Unquiet-Dea...d=1413623409&sr=8-1&keywords=the+unquiet+dead

Ann, since MIL is causing your family such a low quality of life, what is the objection to moving her into a care home? I'm referring especially to how she is coming between you and your husband. And she is using you as a kind of emotional punch bag. This can't be doing your brains any good as you are constantly trying to make sense of the chaos and nastiness coming out of her mind. You are absorbing (in a very real, literal way) the toxic energy that is passing from her energy-field into yours.

 

[Ann Mac]

Ann, since MIL is causing your family such a low quality of life, what is the objection to moving her into a care home? I'm referring especially to how she is coming between you and your husband. And she is using you as a kind of emotional punch bag. This can't be doing your brains any good as you are constantly trying to make sense of the chaos and nastiness coming out of her mind. You are absorbing (in a very real, literal way) the toxic energy that is passing from her energy-field into yours.

A lot of reasons, really

She had a horror of being 'put in a home' - that still applies. I owe her big time - she was, for nearly 20 years, the best Mil anyone could have - that plays a part. For my husband - he made a promise to his Dad, and whilst he acknowledges it may not be possible to keep to his word, and that he knows his dad wouldn't blame him, for the sake of his feelings I want to support him in keeping her here, if we can, for as long as possible. I talk with my kids all the time - all of them speak very freely with me, and let me know that its tough and will have a rant to me at times. But all 3 want Nana at home with us, still. And I have worked in care homes - I've worked alongside some absolutely fabulous carers, watched them go the extra mile time and time again in their care, I know that Mil would be safe and her basic needs met- but know only too well that constrained budgets have an impact, and that as long as I can cope for, Mil will get better care with us. If I hit the stage where coping is no longer possible, if I hit the stage where - even if the kids say differently - that I feel its too much for them, if we hit the stage where I just can't meet her needs and she needs what a residential place can give, then I won't hesitate. Its about balance, I guess - for now, its hard, but day care and TP help me cope. As long as I can cope - she stays with us

As for the seeing spirits - I don't discount anything, I guess

Terry, as you say, its incredible what they see - I think its not so much that she sees these things, more that she sees NOTHING unusual in seeing these things, if that makes sense, that I struggle to get my head round She just doesn't question how impossible some of it is! It never occurs to her that dragons, say, just aren't real - or that at the age of 73 (and she will tell you her age, give or take a couple of years!), she has left school and doesn't have to worry about learning her 'words' for the teacher. I can echo the deterioration in short term memory - we can collect her from day care, and before we get home, often she has absolutely no idea where she has spent the day - she either can't remember, or there is a completely confabulated reality in its place

 

[cragmaid]

Ann, what do the medics say about the various hallucinations? Have they tried medications, I don't mean chemical coshing, but there must be something worth trying, surely.... unless they've all been tried and failed.

 

[MrsTerryN]

, as you say, its incredible what they see - I think its not so much that she sees these things, more that she sees NOTHING unusual in seeing these things, if that makes sense, that I struggle to get my head round She just doesn't question how impossible some of it is! It never occurs to her that dragons, say, just aren't real - or that at the age of 73 (and she will tell you her age, give or take a couple of years!), she has left school and doesn't have to worry about learning her 'words' for the teacher. I can echo the deterioration in short term memory - we can collect her from day care, and before we get home, often she has absolutely no idea where she has spent the day - she either can't remember, or there is a completely confabulated reality in its place

Anne (sorry didn't quote that part of the post) you sound like you use tp the same way I do. Tp for me is venting I don't get recriminations for voicing an issue I have with mum. I tend get 'don't worry I have been there' responses.

You know (this is now in relation to the quoted part) I don't think I have thought of it that way.
Mum does not think it stage that at 80 she is employed whilst living in an environment with nursing staff
Mum doesn't think it strange or inappropriate to open her door in depends only (I very horribly gave that visual to my husband while he was eating dinner I think I need a shame faced emotive with a little giggle on the side)
Mum does think it is unreasonable to not go out for walks whilst on a frame
Mum doesn't think it stage that her clock face melted and dripped mum doesn't think it strange she doesn't remember my birthday
Thank you Anne for that perspective







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[Tin]

Dear Ann, I Use tp for exactly the same reason, a chance to quickly write down what worries me or comment on the stress and confusion that mums behaviour has on me and knowing that other people understand makes a huge difference in my day to day life, I suppose its another coping mechanism. I only got online 5 months ago, initially so we could use skpe, but now I think back and remember how my life was without this valuable resource!!!

 

[Owly]

Thank you for explaining, Ann. I didn't realise you had been a carer in residential homes yourself. I'm happy that you had those good years with MIL and I understand the feeling that you 'owe' her.

 

[Ann Mac]

Ann, what do the medics say about the various hallucinations? Have they tried medications, I don't mean chemical coshing, but there must be something worth trying, surely.... unless they've all been tried and failed.

Hi Maureen, we've sought help when we have had times when they cause her distress - early morning hallucinations were a big problem for a while, and the effects could last all day. She has been on respiredone for several months now, to help with sundowning, and that we were told, would also help with the agitation and upset that the delusions can sometimes cause. She was also prescribed lorazepan, to be given prn for the same reason, and mitrazepan at night - but at best all have at most, sort of toned down both the sundowning and agitation. However, she is now desensitized to the lorzepan (she actually became very disinhibited after taking it, eventually) so that has been stopped, and we had a review this week, and now the respiridone is going to be reduced and replaced by mematine (sp ? ) as not only the respiridone become less effective, but despite a doctor assuring me several months ago that it was not responsible for her shaking, the consultant now says that she has 'parkinsonisms' and it may be having an impact.

Tin and Terry - TP is like a safety valve, I guess - writing it down, blogging - gets the stress out of the system, lets me clear my head . I think writing it down also provides a bit of distance , a chance to be more objective and let the head rule, rather than the heart! And reading about how and what others are coping with, reading posts from those that actually have dementia, reminds me that often, things could be a lot worse, and often give me incredibly helpful, alternative perspectives

 

[MrsTerryN]

Here is today's safety valve. My mother is absolutely horrible.
She was actually waiting for me when I got there and promptly told me to get out. The venom was quite significant.
It appears the one friend who does ring has told her about another ill friend. No idea what about but it all my fault because she is not allowed out and she doesn't want to see me just to get out.
Her parting comment to me was pay back some of the money.
It is funny I have tons of guilt about spending her money on her things
She has also gifted money quite happily (earlier in the piece).
Every financial decision has been run by her and her brother. Also my son and husband know as well.
When she is good she is quite satisfied with things and knows what is going on. I show her the bank book with the money etc.
Out of the last seven days five have been quite horrible from her, two reasonable. I actually thought she was going to hit me except she couldn't keep her balance.
I left after ten mins.
I said I would be back tomorrow to see her
I can so understand why carers often predecease their carees and I am, to quite a degree, removed from her care because she is in a nursing home and I am struggling.

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[Ann Mac]

I'm sorry you had such a rotten visit, Terry It builds, doesn't it, when you get the nastiness for several days in a row. And another puzzle - how can our Mum's and Mil's know and remember the exact things to say, to push our buttons and/or stir the guilt monster? Mil doesn't know, 75% of the time that I am her daughter in law - but she knows precisely what to say to upset and make me feel bad. I have to stop myself justifying things that I do in response to some of the 'digs', and I still find it hard not to feel incredibly hurt on occasion, no matter how many times I tell myself the old 'Its not her, its the dementia' line.

Is it possible for you to have a day or twos break from visiting? Just to give you a chance to escape the horrible attitude - and perhaps a short break might be enough to break the cycle of nastiness? When I was struggling with Mil kicking off about going to day care, several people on here suggested shaking up the morning routine, and it really helped - I think behaviours can become habit, and sometimes a 'shake up' can be a really useful way to break that habit.

Mil was actually pretty good last night - we got the determined efforts to go to bed from about 6.30pm onwards, and the inevitable 'home', but she didn't tip over into real nastiness at any time, thank goodness. She was more focused on trying to work out what exactly my OH is - is he her son, my husband or her husband? I explained several times he is her son, and my hubs, but not her hubs, and she couldn't get her head round it - it was like she couldn't process that he could be both a son to her and a husband to me. She asked me several times how he could be 'both things'. As for him being her husband - she just kept saying 'Well, he looks exactly like my husband looks' Oh yes - and the 'little girl' made a (Thankfully) brief appearance to!

I must tell you about one incident yesterday, that had me in pleats laughing Mil got dressed before coming downstairs, which makes it a bit harder to persuade her into the bath - but eventually got her into the bathroom, after breakfast and a couple of cuppas, and was helping her undress. We got to her bra, I unfastened it , and as she took it off, several sweet wrappers and an actual toffee choc fell out of the garment! Quick as a flash she snapped out 'I didn't put them in there!' (I really should have asked her 'Well, who did then?) - downstairs I noticed there was a bag of wrapped flavoured toffees on the dining room table. She must have been just helping herself - but sneakily. I never even saw her take one, let alone saw her chewing - but she must have managed it, somehow. Amazing how crafty, and quick, she can be when it suits

 

[MrsTerryN]

Thanks Anne. I will be having a bit of a break I think I will be starting it a bit earlier than I thought I was going to.


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[Grace L]

Ann Mac ....
If the toffees were hidden in her bra they would be warm and soft...
No need to chew, and would melt nicely in the mouth...

Reminds me of MiL.... came into lounge 'walking strangely'.... arm clamped by her side.
A Kit-kat was poking out of her armpit, and she was trying not to drop it...

I asked ' Uuhhh, 'What's that?', (she'd already eaten a big dinner/lunch, and a fresh cream cake) ...
She grabbed it, shoved it up her sleeve, and said 'What, there's nothing there !'

 

[MrsTerryN]

Thanks Anne I am having three weeks off.

Mum was worse today. She apparently told one of the physios she was going to make it hard for me today
I spoke to the director and they have already called in the doctor due to her aggression. They are going to do a behavior log on her.
There is a chance she maybe moved to the dementia ward from her section she is currently in.
It has a higher nursing level of staff
the staff were lovely to me today and said they deal with it all the time and don't have the vested family interest in her.
When I left her today I gave her a kiss and said you are still my mum, her response was a glare and 'worse luck'

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[Ann Mac]

Grace L, that is so funny - I'm getting a mental image of the scene, and laughing my socks off So like something Mil would do - after being very good about sweet things for quite a while, she is now getting a bit obsessive about them again, and I swear she had had lessons off the Artful Dodger when it comes to her being able to snaffle sweets or biscuits without me seeing! At her old day care, the staff would receive or bring in big boxes of chocolates and put out them out for people to help themselves. I'd always know when this happened, because Mil would come home, and her handbag would remind me of the Tardis - you wouldn't believe the number of sweets/chocolates she could fit in it, when she has had the chance to go on a spree!

I'm sorry you had another rough visit, Terry - but it sounds like the staff are on the ball, and trying to deal with it, which is good. How do you feel about her possibly being moved to the dementia ward? We've just had to change Mils day care from a fairly relaxed low key place, with an open door policy, to day care in an EMI unit, which is secure - I was relieved that Mil will be safer there, as she won't be able to just wander out, but a big part of me was sad that she now needs a more secure place due to deterioration in her behaviour

I was wondering, does your Mum know you are going away on holiday? Could this be her reacting to that? I know that if Mil is told that Hubs and I are doing anything whilst she is in day care, then she doubles her efforts to avoid going, and it can make her behaviour more difficult. Even if it is, I am so glad you are getting a good long break - I hope you have a fab time

The delusions were not too bad with Mil yesterday - a few instances where she was convinced she had something cooking, or that she had something she should be doing in the kitchen, and a conviction that we had to go out to 'pay the rent' for about an hour after she first got up, but that's all. But she drove me mad last night with the 'I think I will go to bed now' routine - every two minutes - 'What's the time?' and when we told her she announced she was 'going to bed' - this from 6pm last night! Twice she said she was going to the toilet - and took herself off to her bed instead, and we had to go and persuade her to get up again. It was clear that she was aware that she had to stay up till 10pm, and her meds, but the attitude was she didn't care, she was going - explained abut how she tends to wander in the wee small hours if she goes to bed earlier, and wake her granddaughter. It was very much 'So what, don't care, I'm tired' So, of course, we started to get the verbal digs - between that and the constant nagging to let her go, by 10pm, we were ready for bed ourselves!

She has an appointment for blood test and flu jab today, which means she will be agitated and upset for the rest of the day, as any sort of medical appointment is hard for her to handle. Typical that the only appointment available quickly (her consultant wants the blood works asap, before changing her medication) is on a day when Hubs has a 12 hour shift, so I'm solo with her - suspect a long day ahead!