So bizarre !

[LYN T]

Oh Ann! I don't know how you keep your cool-you are a star I posted on someone else's thread yesterday that Compassionate Communication was a good place to start when dealing with a PWD. However, when it's been tried and doesn't work what can you do? Think on your feet that's what Horses for courses comes to mind.

You do well for your MIL-very well indeed.

Love

Lyn T XX

 

[RedLou]

I think the flannel instinct was a good one, Ann. It did absolutely no harm but it immediately brought to her attention that her actions have consequences. Same with going to unplug the hairdryer. It seems there's quite a lot of consciousness to MiL's difficult and contrary behaviour. There's a flavour of toddler tantrums about them.

 

[Slugsta]

RedLou, I do agree with you about the 'toddler tantrum' behaviour. In a similar way to a toddler, MIL cannot be reasoned out of her behaviour or beliefs. It does seem as if you might have hit on a reasonable way of dealing with it Ann. I don't think throwing the flannel back at her was the crime of the century - it wasn't going to do her any harm, whether she caught it or not and, as has been said, it did make her realise that her actions have consequences.

I think the difficulty comes from the feeling that it is wrong to treat adults like children. Especially when those adults are your parents! But sometimes it seems as if it does get the desired response, without doing any harm to the PWD.

I recognise the 'calm voice'. My son was quite young when he realised that mine means that I am either angry or worried!

Yes, with hindsight, I could maybe have talked a bit about the party and how much fun it will be. The reason I didn't think of it is that I detest that kind of occasion and am dreading it!

I usually see Mum for coffee on Wednesdays but tomorrow she is having a visit from a physio from the Falls Clinic at 1.30, so we will take her out for lunch instead, then neitherof us will need to be out for too long. I intend to have a word with the physio about the 3 wheeled walker that Mum is using and see if I can get rid of it (it came from her neighbour who is welcome to have it back!)and get her back to using the 4 wheeler we bought for her.

 

[Essie]

It wasn't the most comfortable of mornings, but I think it was better that I didn't respond to the provocation and nastiness

Hugely pleased that it worked, if only that was it, sorted..... At least it worked even just this time but it might, might be an usable approach going forwards, it seems Mil does still have enough capacity, unless she's in a complete tizz, to grasp, pretty quickly, when things are not working out as she thought they would and change her behaviour appropriately, albeit grudgingly. I also think she's still, sometimes, canny enough to respond with "oh you're ignoring me, well that won't work!" but hopefully 'need' will win out eg. wanting to have her hair dried, and compliance will appear more quickly and with a bit less 'input' from you Ann. You've been responding to Mil as we all would to a fellow 'adult' - asking nicely, repeating requests but like Red has said there really is no other word for Mil's behaviour but tantrums - what is actually you being nice, persistent nice requests, Mil sees, when she's in tantrum mode, as her 'victory' - making you repeat stuff. Shutting down that escalating 'provocation/direct response' loop to 'provocation/nothing' might yield some results, at least in the short term. I do hope so.

 

[Ann Mac]

Morning all,

Anne, I think you are right, that mix of confusion and awareness makes it so difficult. Mil is occasionally losing words and occasionally can't work out how to describe something, but other than that she remains very articulate and can manage extremely quick verbal come-backs when she wants to argue against what you are saying. And like your OH, she will sometimes admit that she forgets 'things' - yet still insist that her recollection/version of reality is right. One of the phrases we hear a lot is 'I know I can forget some things - but not this time, I'm remembering this properly' .

I absolutely agree that Mil's behaviour is often 'toddler-like', complete with tantrums, as Red and others have said - I think I've said before though, that I feel that there is an aspect of 'magical thinking' with Mil, similar to what you get with young children, as well as the sometimes 'childish' naughtiness. She thinks she only has to want something badly enough for it to eventually happen, in her head , and like a young child who is convinced that his or her parents can deliver on demand if he or she repeatedly asks and pesters, this is how she behaves with OH and I. There have been a lot of occasions when in response to a repeated demand I've asked her what she thinks the answer will be and she has been able to tell me correctly - but when I then say 'Why do you keep asking then, Love?' she will tell me beause she doesn't 'like' the answer or that she is waiting for the answer to change to what she wants to hear. I tell her that can't happen - she tells me she knows, but adds that she can 'hope', can't she? Its really sad - but its also incredibly frustrating and tiring to deal with.

Slugsta, I think that it is a case of 'thinking on your feet' as Lynn says - but just sometimes that is a lot easier said than done. A totally unexpected question or comment, which has come from a dementia based reality, can sometimes just leave your mind a blank - or at least it does with me, lol - and you simply can't think how to respond at that instant. Hindsight is a flipping great thing, and nowhere would it be more useful if we could use it when faced with the unexpected questions thrown at us from our loved ones who have dementia! I'm so often lost for words and left groping for the best way to respond when Mil throws some non-reality based query at me - and 9 times out of 10, I reckon I say the wrong thing in response Good luck with getting the walker sorted with the physio - hopefully, it will be the old story of an authority figure's advice having more impact than anything we can say xxxx

Its an approach I'm going to try and stick with Essie - even if it only works some of the time, to stop thing escalating, that's better than nothing!

Mil was a pussycat for most of yesterday evening, believe it or not! She started off the car journey home from DC with a stream of questions about how we were getting to Limerick and what were we doing 'here' as she didn't know where it was, and I eventually did the 'You have to be quiet while I'm driving' routine, which worked, for once. Back home, she was very tired - I had been told she had been out on a trip to Ellesmere lake for most of the day, so she probably was shattered - and I managed to keep her quite happy with an old documentary series of 'Monkey Business', all about Monkey World in Devon. A few weeks ago, channel hopping to find something she wanted to watch, we happened upon an episode and because she seemed to like it, I recorded the whole series that was being shown - but then forgot about it till last night. She was actually chuckling at the escapades of the baby chimps and 'awwing' over the birth of a tiny baby gibbon and I think that I'll keep the series as it looks like it could be a good 'calm down' tool for future use! For the last half hour before bed, she started on a loop about her late husband, but thankfully, she didn't get too worked up, and at 8.45, as she was clearly dropping with tiredness, I gave the porridge and meds, and got her to bed.

But, less than 10 minutes afetr I had tucked her up, she was back down and you could see from the expression on her face that it was 'all change' from the previously quite chilled behaviour. She wanted a cigarette. NOW. And don't be telling her that she stopped smoking years ago - she has been smoking again all week and her fags are in the kitchen and she is getting them - NOW. I just kept repeating 'Go back to bed please', no eye contact, very calm and she did go, after about 3 or 4 minutes.

OH came home, and we had about an hour of peace and quiet, when she came down again. I went straight into 'Go back to bed, please', but she totally blanked me, sat herself on one of the sofa's and glaring at OH asked him what he was doing here. When he told her that he lived here, she looked from one to the other of us and demanded "Does that mean you two are together now? Openly together?" - and it was very clear she wasn't happy about it, and we were back to her thinking he was her husband. This time we both stuck to answering everything she said with the request for her to go back to bed and again, she went after about 5 minutes - but both of us were now thinking "oh-ohhhhh', because this is exactly how the last round of badly disturbed nights started. With her coming back downstairs, initially briefly and only once or twice, after she had supposedly gone to to bed, quite belligerent and often with her wanting to know what 'You two' are up to, thinking OH was her husband - and it just got worse and worse till we were getting her up and down right through the whole night I just really hope that it isn't starting again

OH now off for a few days - he has to use up a large chunk of leave before April - but no big plans. He has to get Old Red ready for her MOT, so will no doubt be 'pootling' about with her, whilst I intend to do just what is needed in the house, then chill - I'm determined that I am going to give myself proper chance to get completely well - I don't want to feel that ill ever again, thank you very much, lol.

Hope you guys all have a good day xxxx

 

[Grace L]

Good afternoon....

jugglingmum... I think SiL is trying to become 'my new bestest ever friend'... It's not going to work.
I didn't want to go clothes shopping with her in the 80's, and I'm not about to start. I hate shopping.

(Not that we lived any where near in law family then, we were in London 1980's , when I met husband).

She seems to want / need company when she goes out, or does something, and if she finds out I've been somewhere she wanted to go, she's miffed at not being invited along too.

I think SiL wanted to go to my hairdresser as she thinks I might be telling her something she would like to know.... you now how some ladies tell their hairdresser everything?



AnnM....
I hope MiL is calmer when she gets back from DC...
I don't know if I'm repeating myself, or if someone has asked you before..
How long is the car journey from DC? Could you buy a DVD to keep MiL quiet on the journey home?

I got to the stage when I just stopped talking ( or kept chat to a bare minimum) when I was helping my husband get washed and dressed.
It did not feel natural, not talking.... but talking seemed to make matters much worse.
Everything I said was wrong, nothing was right, I was always rushing him....
He couldn't do it / get washed and dressed while I was talking, I was getting him deliberately confused...

I found some days, the less I spoke, the quicker he got washed and dressed.
He was a huge slow coach, but talking seemed slow him down more-so...

It feels really strange 'the bathroom routine' and not speaking, but some days it worked!

 

[Slugsta]

Ann, I'm glad that MIL was calmer for most of yesterday evening. I do hope that the night was settled and the evening stuff wasn't the beginning of a run of broken nights. I'm glad to hear your resolve to rest as much as you can until you are properly well again.

Grace, your SIL sounds a right piece of work, I'm glad you are able to keep her at arms length at the moment.

I phoned Mum at around 9.30 to tell her we would be late collecting her today and to expect us around 12.00. She rang at 11.40 wanting to know why we were late. Physio should have arrived at 1.30 but didn't turn up til 2.00 and spent a full hour with Mum. I was totally knackered by the time I got home! Physio said that Mum would be much better with the 4 wheeled walker - so we removed the 3 wheeler while the going was good Her neighbour is happy for us to get rid of it, so no problem there. When asked what month and season we are in, Mum confidently said 'March; summer-ish'. I realised that her calendar was showing March, so that won't have helped. Physio is going to visit again in 2 weeks time to see how Mum is doing and to give her some seated exercises to do. Anyone want to lay odds on how compliant she will be?

Love to all xxx

 

[Slugsta]

Sleepless tonight. Was mithering about Mum's party so have done a checklist on the comp. Hopefully I will be able to forget about it enough to sleep now.

I meant to say earlier that when we were at Mum's today I did the shopping list for Friday. Looked in the fridge and found 2 pairs of socks and a hankie in there

 

[Rageddy Anne]

Piph, your goldfish explanation is useful, I must remember that. It can be so difficult to remember that people with Dementia really do live in the moment, and what was said a minute ago no longer exists.

Ann, you've said your MIL was a very different woman before Dementia turned her into an angry toddler. Do you think she was quietly manipulative back then, or has that only started now? I sometimes think that so much of what a person with Dementia is now is simply an exaggerated version of what they used to be when they could disguise their behaviour.

 

[RedLou]

Funny you should say that R-Anne. I did a long article once with families where one member had EoD. One of the wives said that to me. It was certainly true in my father's case. --Hope you slept, Slugsta.

 

[Spamar]

Anne, I so agree with you. When I was quite a young child, I thought that as people got old, their 'inner self' emerged. Now I realise that those might have had dementia, and what was happening to them was exactly what you are describing.
I do remember writing in my notebook that 'he (OH) is behaving like a two yo, including tantrums' so it must be fairly common'. OH's didn't go on as long as Ann's mil though, thank goodness!

Hope everyone is OK, and I'll try and get back later to comment further, must go and ablute now!

 

[Ann Mac]

Morning all,

Grace and Pip - I have to keep 'chatting' in the bathroom to a minimum too, when I'm helping Mil. Its exactly how Pip describes - if Mil starts to 'chat', she loses focus on whatever she is supposed to be doing and it can take an age to get her back on track - you have to re-direct her to whatever she should be doing straight away. It's hard and it often feels as though I'm being very rude - I've learnt not to even answer seemingly innocent queries about the weather, to just keep repeating 'Wash your face now please'. If I do answer and there are even just one or two comments made, then when I try to get her to go back to what she should be doing, then not only does she struggle to re-focus, but she is also likely to be convinced that she has washed herself already and will then get cross because she is sure that I'm making her do it all again Its the same with getting her to take her meds, and sometimes even putting her coat and shoes on.

Glad you were able to get the walker sorted, Slugsta. Good luck with the exercises and your Mum - Mil, when she first moved in, had appointments with a physio after a fall she had had, where she had damaged her shoulder, and she was given a series of exercises to do. It was a nightmare, because she wouldn't remember to do them, I'd know that she hadn't done them - but Mil, when asked, was convinced that she had and so would refuse to do them 'again' (as she thought) when I tried to persuade her to. I hope, after doing the checklist for MUm's party, you were able to get some sleep, hun xxxx

R-Anne, the only thing Mil and I ever really fell out about over the years was how sneaky she could be about spoiling her grandkids or about getting her own way about doing certain things with and for them, even if OH and I had expressly said no to something. When oldest was first born, she was only a couple of weeks old when Mil gave me a list of what she expected me to allow -that she would buy daughters first Christmas outfit, her first pair of shoes, take her for her first haircut - even take her to her first day at school! When I pointed out that actually, OH and I might like to do some of those things, she spun me a yarn about it being an Irish tradition that she should have her own way, and got told 'Tough - we are not in Ireland now', and it really annoyed her. During the first year, we had several instances of her going behind my back to appeal to OH or Fil to talk me into allowing her to do this or buy that, or her buying things anyway or arranging stuff that we had said no to, and it took several big rows to get her to back off - but even after that, there were odd occasions where she 'went behind my back' with the kids, and we would have a massive fall out when I, for example, opened my daughters wardrobe and found perhaps a £100 worth of new clothes hung up amongst her other clothes, or discovered that son was playing in his room with the very expensive toy that we had said he must wait for till Christmas. It wasn't a constant issue, there would be long periods where, even if she wanted to buy/do something, she would behave, but as I said, it was one area where she could be very sneaky and manipulative

Mil again wasn't too bad last night, though clearly a little more 'antsy' than the night before. At one point, when I walked into the room she asked where Ann was. OH pointed to me and said 'There', Mil told him that no, she meant his wife. So we both reminded her that I am his wife and she then insisted that he must have two wives, because she knew he was married to someone else, and she was quite 'off' with me about it . She was very up and down, looking for this and that, and a pain for getting up and fiddling with books and others belongings, too. 10 minutes after getting ehr to bed, she was back down, claiming she hadn't had her meds. Same thing 10 minutes after that. Then an hour later, back down again, this time insisting she had to make 'butties for S*** and his Dad'. I went up to bed half an hour later, and found her bedroom door wide open and Mil sat on the bed, attempting to pull the sheet off - she insisted that there was a big rip in it that she had to sew (Nope, no rip). I got her tucked up and settled (I thought) but then 10 minutes later had to get up and tell her to get back into bed again. I woke very early this morning, and caught her coming downstairs at just after 5, then again sent her back up just before 6 - and yongest has just told me that her Nan woke her in the night, switching the landing light off and on

We have the appointment with the consultant this morning, and OH will be there, so hopefully, between the two of us we can get some concrete help with the behaviours. We'll see - I'm not even 100% sure we will be seeing the same chap as last time - it might be another locum who has yet another set of pet idea's, and Lord knows what will happen

Hope you all have a good day - Mil si on the move again, so I'd better dash!

 

[CeliaW]

Good luck for the appointment xx

 

[Grace L]

Good luck xxx from me as well AnnM (and Mr Mac) .
Can you pass the Consultant a few notes before MiL has her appointment? I used to do this with my husband.
He never saw, and thought I was just checking him in when he saw me hand over a 'letter'.


Slugsta.... I don't know what's going on with SiL, she's become very 'needy', and really jealous of others.
Her reactions are way OTT . I'm not going to tell her when I am going out , or where I have been, or what I have planned for tomorrow. She keeps texting me, and I don't answer ...

If only I could get her to see her Mum on her own, she does not 'need' to have me there for support.

If (and when) her Mum gets an episode of 'sundowing' , or confused, or in a 'loop'...
SiL needs to learn how to react without getting angry. She cant do this.
She does not like 'little white lies', and tries to correct her Mum. .... Will not 'go with the flow'...
I think she thinks if she repeats herself 'shouts louder' ... her Mum will 'snap out of it'...


So far (fingers crossed), MiL is calmer when I see her in her home.
I think (?? ) MiL often 'saw me' as the 'other woman' ... a bit like AnnM MiL.
Now I see her in her home, she is less angry with me.

There are many episodes of MiL where she thought it was her husband that died and not her son.
and... for some reason I was still living in her 'other house' ... rent free !!

It would be interesting to see if MiL came over here again, how she would react seeing me in my home.

 

[canary]

I just thought Id mention - it was a full moon on Monday.....

 

[Slugsta]

I hope the appointment well today Ann. It's very interesting that MIL was very manipulative even before the dementia. It really does seem as if PsWd sometimes display behaviour that is an exaggerated form of their previous worse characteristics.

Grace, your SIL's behaviour also seems rather childish. She obviously has a family history of D, is she showing any traits that make you wonder? Not that she is your responsibility whatever!

I finally got to sleep sometime around 3.30 this morning, was very glad I didn't have to be up for anything I have asked hubby to take me shopping at the weekend so that I can get some things like paper plates and napkins. Then there will be less to mither about.

Hope that everyone has had a calm, manageable day.

 

[Ann Mac]

Morning everyone,

Thanks Celia x

It almost sounds like your Sil is a bit panicky because you are backing off and leaving her Mum more to her, Grace. I think you just have to stick to your guns and be wary of her attempts to 'cling' to you for the support, Hun - as you say, she will have to learn to deal with her Mum by herself x

Lol Canary - both OH and I commented on the full moon - OH saying he was glad he has booked time off, as he also swears that the young man he looks after tends to be a bit more 'challenging' when its a full moon!

Hope you got a better nights sleep last night, Slugsta. Last year, on Mil's birthday, she spent the whole day being surprised each time someone wished her 'Happy Birthday' as she kept forgetting what day it was, though if you asked her, she was still able to tell you that her birthday was 20th March . A couple of weeks ago, she was however, insisting her birthday is in September and yesterday, when I finally got her to sign a birthday card for OH (for today) she did argue for a few minutes that both his and her birthday's are not till December (she was also certain that its 'only July' now!). I don't think she would be able to cope with a party, so make the most of your Mum's birthday bash, Hun - hope you have a fab day xxxx

Our lovely CPN turned up, 10 minutes into the the appointment, and carried MIl off so we could speak to the consultant - we are lucky to have her, it makes it so much easier when she does that for us. The consultant was actually the same chap as last time - not permenant, but apparently he may be there for as long as 12 months, which I guess is better than nothing. He spoke to Mil first, with us there, and I was a bit gobsmacked at how well she can stil deliver the 'hostess mode' behaviour. She told him that she thought the frame made her walking worse, that she falls more now she has it - and very convincing she sounded too, however, he stuck to telling her that she must use it for her own safety! She said she thought her memory was a 'little worse' and gave the example that when she goes to the shops, she forgets what she has gone for and buys the wrong things. She also said that she goes to day care - usually she calls it work or school, so i was surprised that she gave it the correct title - however, she very confidently said she goes just two days a week, on a Tuesday and Thursday. Then she floored both OH and myself by telling the consultant that she thought she had gone more 'bad tempered' lately and turning to me said 'I can be awful, sometimes, can't I Ann?'. I was totally gobsmacked - its always 'someone elses fault' with Mil, always down to some (usually imagined) thing that one of us, or someone else has done when she is cross. Last thing I expected was for her to even realise, let alone acknowledge, that her behaviour is a problem. I found it both quite shocking, and ever so sad that she showed that much insight

Once she had left, we talked about the sundowning and how there had been no real improvement and explained about the 'porridge and paracetamol' routine, adding that although its worked brilliantly so far, we had had several evenings in the last week where the disturbances seemed to be starting again. He's very frank - which I prefer - and said that initially he was going to increase the orlanzapine again, at night but added that he felt Mil was unfortunately just one of those patients who were quite 'resistent' to medication. He was concerned at what we had reported and about her obvious deterioration. He then said that there was a 'new' medication that he hoped would be available in Wales within the next 2 months - its available in England, apparently, but in Wales, because of the cost, the powers that be tend to be slower and more 'difficult' about granting a licence for it to be used. Once it is available, he wants Mil on it as soon as possible, as he thinks it will help with both sleeping and the evening sundowning. He also commented on the lack of appropriate respite and even long term care in this area, sounding about as impressed as we are He wants to see Mil again in 2 months time, when hopefully, he will be able to prescribe the new drug - I wish I could remember the name - I have it mixed up in my head with memantine, I think, and keep going to call it 'Melantine' or 'Melantone' - but I'm sure neither of them are right!

We dropped Mil off at DC after the appointment, and when OH then picked her up at 5, she was - as expected after any hospital visit - quite agitated, though I don't think she had any recollection of the actual appointment at all. The whole of yesterday evening was spent with her going on and on about her late husband. She accepted he had passed away and that it had happened many years ago, but she kept talking about it as though it had just happened, and we had tears and her going over and over all the people she said she had to tell - including her in laws (passed away) her husbands brothers (also both dead), her parents (dead) and a friend of her (also sadly dead!). Every two minutes it was 'Oh - what am I going to do? Oh dear! I'll have to let Betty know . . . and John. . .and his Mum and Dad'. We also got repeated queries about the bus and train times to get from Limerick to Fil's home town in Ireland, mixed in with how she had to go 'home' to sort out black clothes, which morphed into her insisting that it was time to 'go home' anyway and her insisting she had changed her mind about selling the house and had 'stopped new people moving in' without telling OH and I, so if we wouldn't mind giving her a lift? NOW! It was a relief to get her to bed at 9 - this time with the increased orlanzapine dose - and not sure if its just coincidence or an actual result, but last night, she satyed in bed - no up and down the stairs at all.

Very sweet but sad, I finally got her to sign OH's birthday card, last night - I'd tried before but had had her arguing that he was her brother and so she would't give him a card that said 'To my Son' on the front, and then when I tried again she got all haughty with me and insisted she had already got him a card and had it in her room, so she wouldn't sign 'another one'. Last night, despite the fretting over her husband, she agreed to write it without too much fuss, and wanted to do the whole thing herself. She managed 'To S***' correctly, but then - writing over the top of the verse inside the card and at a very tipsy angle - she added "Wisshing you a hahhie biskyday, loov Mum" . I doubt she will be able to even manage that much soon, so i suspect that card will be possibly the last one she manages to write herself, bless her.

Oldest is back down for the wekend tonight, which will be nice. No big plans for today, OH and I might tootle off for lunch somewhere to celebrate - I've bought him a couple of little pressies, but the main gift is cash for new running shoes (I wouldn't DARE risk buying them myself, lol!) - but we intend to keep fairly quiet this evening about his birthday as it will only lead to Mil fretting and getting worked up, sadly

Hope all of you mange to have a good day xxxxxxx

 

[Ann Mac]

I forgot to add - silly thing, really, I guess - but I ended up feeling very fed up yesterday afternoon - posts all over FB about how £5M has been awarded to create an 'Art Hub' in the centre of town, with a good bit of the pot coming from the local council. I've worked a lot with local artists - there are some amazingly creative and talented people around here - and just 3 or 4 years ago I would have been sending congratulations to our Arts centre manager and his staff.

Now, I all I could think of was £5Million!!!!, when the same council have closed down the last EMI nursing home in the area (because it wasn't 'cost effective'), and are so reluctant to provide enough respite beds (or even just one more bed) for the whole county.

Its funny how your perceptions can change so radically, isn't it ?

 

[arielsmelody]

About the drug - could he have been talking about 'melatonin'?

 

[RedLou]

I agree with you, Ann. We have an Arts Centre here - it's all conceptual stuff, some of it good, most of it pretentious rubbish - that has eaten up public money. Meanwhile, they contracted out the elderly care service and guess what? The private health company withdrew from the contract within months because they couldn't make enough profit from it. Joy.
Fingers crossed on the new drug. --MiL's response to the locum suggests what we have all thought - that there is some control and self-awareness but she usually doesn't exercise it. Perhaps it takes a lot of mental energy and effort, perhaps she doesn't feel the need when with family, perhaps a bit of both. ?