So bizarre !

[RedLou]

Ann - forgive me - I need a recap. If she goes into an NHS facility to have her meds assessed and altered, she will be staying quite a way a way in a fairly unpleasant environment? --Even so - has the time not come? You are running on empty, love. *huge hug* x

 

[Ann Mac]

Ann - forgive me - I need a recap. If she goes into an NHS facility to have her meds assessed and altered, she will be staying quite a way a way in a fairly unpleasant environment? --Even so - has the time not come? You are running on empty, love. *huge hug* x

Not quite, Hun - she can't go into an NHS facility to have her meds adjusted because the one supposedly allocated ward for that purpose is full of dementia/elderly mental health patients who are stuck there whilst their families, CPN's and SW's try and find permenent placements for them - effectively, that means that there is no NHS facility where an admitted medication assessment can be done, that facility has simply become a sort of holding pen, and it even has a waiting list of people who need permenent care, and who are waiting to be admitted to that ward as a first step. There are virtuallyr no private EMI Nursing beds in the area, which means no EMI nursing respite (and for medication assessments, that's what is needed, apparently) so we can't even book her into one of them for a week or two, whilst meds are sorted. And I know it sounds unbelievable, but that is honestly the situation - and I've been told that, sometimes repeatedly, by CPN's, Social Workers, the Elderly Adult Social care staff I've spoken to and Mil's current consultant. I've spoken to local MP's, Assembly MP's, EMP's - I've even sought out Plaid Cymru, the party that made such a big issue about dementia care in Wales at the last election. Initially I get told that they would look into it, they promised that they would 'follow it up and help', and I was so hopeful, but then - nothing. Which tells me that the whole thing is such a mess that they won't tackle it, despite their claims. I tried the local AZ rep, over respite , last year, and bless him, he told me he was simply bogged down in dealing with CHC appeals and he clearly had no time to tackle anything else. The local carer's association seem completely clueless about the situation as regards dementia respite and facilities, and my reporter friend told me the difficulty is the 'fudging' and lack of response from the council makes getting a story so incredibly difficult that they can only report 'so much'. There is only so much that I have the energy to battle, and while the 'bigger picture' is the most important thing in the long run, there are so many just 'mini' issues to sort that I'm out of steam at the moment. I honestly don't have a clue who is left for me to approach, to at least ensure that there are enough respite beds, let alone anything else and with the medication issues and now the surgery closing, it just sort of feels like insult has been added to injury, IYKWIM

Pegsdaughter, our local MP has already stepped up and said he will try and find out what the heck is going on - I've messaged him at the weekend, with my specific concerns about MIl, and am hoping that I will hear something back today or tomorrow x

Mil determined to stay in bed this morning, adamant that her legs haven't worked properly since she had that 'very bad fall at work' Lol, think I've used up my fighting spirit this morning, just getting her out of bed, washed, dressed, fed, medicated and into the mini bus!

 

[its a struggle]

Let me take you back

Mils delusions/confabulations are getting more and more extreme - though Thank god, she isn't finding them upsetting and they are not stressing her out at all. But the sheer 'strangeness' and the absolute lack of logic behind them is breathtaking.

Just yesterday, we had her asking when her next exercise session was - you know, the one where she and the dog go to the gym!

We had her frantically looking for the 'Christmas Mobile phone' she had bought - she showed it to me, she said - the red one, that she is allowed to use to phone her brother at Christmas.

Last night she leapt out of her seat to go and 'clean that room'. What room? The one upstairs, where we play ten pin bowling, apparently - oldest daughter caught that one - I walked in to find Mil demanding that daughter accompany her up the stairs so she could SHOW her the bowling alley, and Mil then insisted that I went too. She went in every bed room, bathroom too - even opened the landing cupboard - but wasn't that worried when it couldn't be found.

This morning, she is worried about getting to her job at the theatre on time - the theatre where she wears the blue dress on the stage and there are horses

Because she isn't upset, then it doesn't worry or upset me, and its not stressful to deal with - but I am seriously puzzled by where on earth these odd ideas come from!

Ann, this is the post that introduced me to the strange delusions that PWD suffer and gave me such reassurance about my MIL. I have followed your trials and tribulations with admiration and sadness for you and your family. From being an amusing and endearing tale of the strange things our loved ones believe at times your thread has become (IMO) a traumatic litany of real anguish.

I have lately been trying to imagine how it must be for a confused elderly lady who thinks she is being to forced to share her home with the woman who has stolen her husband. The woman who makes her take her clothes off in front of her, who insists she washes and brushes her teeth when she knows perfectly well she has already done these things. The woman who won't let her into her own kitchen etc etc.

It seems as though her day to day contact with you is fuelling these delusions and cannot be good for either of you and the following extract from today's post brought me to tears.
"The awful thing was that after she had gone, OH commented that it hadn't been a bad night - over 2 hours of not being able to watch TV. chat, read, or do anything without having to stop every few minutes so that one or the other of us could deal with Mil wanting a lift home, asking for a taxi, or then heading up the stairs for bed (or towards the kitchen, as she occasionally remembered that she needed to take her meds) - and yet we both felt that it hadn't been a bad night? Just one of the things that I was turning over in my head last night as I tried to sleep."

I really do not know how you do it and I apologise if I have offended in any way, but please do not leave it until you are totally broken before finding a safe, happy place for MIL that enables you ALL to enjoy her remaining time.

With love & admiration, Chris

 

[Ann Mac]

One bit of good news - I've got respite for the night we are going to see Joseph - not the full week I had hoped for around that date, as respite is otherwise fully booked, but for 5 nights from that date. Thank God - I'm so relieved that its one fight I can now cross off the list!

Edited as I've just seen your post, Chris - no, of course not offended, hun. I think its just sheer awful bad luck for Mil and us that we are in this situation - but I don't think we are alone. I just think that care services have now been cut to the extent that care for those that have the sort of issues that Mil has are just 'too expensive' and difficult for some LA's to deal with - R-Anne's in a worse situation to my mind, for example - at least I can occasionally get respite, and at least I have another adult here, a lot of the time, to share the load. I honestly don't know what will happen. At the moment our best hope, dreadful as it sounds, is that Mil deteriorates to a stage where she isn't so tortured. I know that will probably mean she needs more physical care and that there will be heartbreak over other issues, but if we can lose the torment for her, I can't help but think that it would be better for us all xxxx

 

[Rageddy Anne]

There's a great lake of Carers' tears just waiting to overflow. I think I can imagine exactly how you're feeling Ann.

Thank heavens for the respite, at least you have that, fingers crossed.

Do you think your wonderful GP, voting with her feet, might be setting up privately, as the NH dentists did? Any chance MIL could see her privately?

Here's a rather damp shoulder to cry on......damp from swimming in that darn lake.

 

[Essie]

Firstly I am so pleased you have some respite arranged Ann, it does all seem to be getting a bit much at the moment with how much you having to cope with and not being 100% well and with even what should be simple stuff, like prescriptions, being such a flipping on going battle - it all wears you down.

I have lately been trying to imagine how it must be for a confused elderly lady who thinks she is being to forced to share her home with the woman who has stolen her husband. The woman who makes her take her clothes off in front of her, who insists she washes and brushes her teeth when she knows perfectly well she has already done these things. The woman who won't let her into her own kitchen etc etc.

It seems as though her day to day contact with you is fuelling these delusions and cannot be good for either of you

That's really where I've been going recently with suggesting 'ignoring' Mil's behaviour as much as possible otherwise Mil's 'loop' becomes everybody's loop and you're all on a hiding to nothing. As you've said yourself Ann -

I know that talking about her delusions with anyone reinforces them for her.

It is hugely admirable that for the most part you do still try and reason with Mil and speak to her as if she can always understand you but do you think the time for that is passing now? Is it likely a different approach is now more appropriate to her current presentation?

 

[RedLou]

The thing is, it doesn't seem as if MiL's confusion, as described by Chris, is causing her fear - rather she is opting for anger and unpleasantness to stave off the fear. It's a technique that some performers use instinctively - I remember reading that Nureyev would pick a fight with someone before going on stage so that he didn't succumb to stage fright/nerves - and it almost seems as if MiL is choosing to be belligerent in a similar way. Which makes life easier for her, so you can see why such a mental/emotional survival instinct might kick in in someone who was quite assertive in her former life, but it also makes life more difficult for Ann.
Ann - so glad you've got some respite arranged. Glad also you've got something just for you planned. Hope the haircut boosted you, too. *second hug of the day*

 

[Rageddy Anne]

Sorry to giggle, probably hysterical laughter, but I have a mental picture of Ann's MIL picking a fight and then doing some mighty pirouettes onstage! Maybe think of that next time she behaves like Nureyev!

 

[Essie]

The thing is, it doesn't seem as if MiL's confusion, as described by Chris, is causing her fear - rather she is opting for anger and unpleasantness to stave off the fear.

I think that's really far too complicated a situation to make such a clear cut call on - I would imagine closer to the truth is that Mil is often scared by her own thoughts/experiences - Ann says that she is often distraught and sobbing by the latest fixation and who really knows what is going on in her mind? If we are distraught looking at dementia imagine what it must be like looking out from it........

I agree Ann that Mil's behaviour towards her son may well stem from trying to 'lay claim' to him when there is still recognition there of a familial link but the exact link isn't clear so it morphs from son to brother to husband and husband may well feel the strongest 'claim', especially when there's 'another woman' around so it is likely that's the one she'll gravitate to when she's at her most unsure.

 

[RedLou]

That's not fear though, Essie, is it? It's distress at a (supposed) death. ? But yes, you're right - i'm being a bit simplistic. I think I tend to downplay MiL's state because my sympathies are with Ann and I often get worked up on her account. I'm sure we all do but most people are more mature than I am…

 

[jugglingmum]

Ann - so glad you managed to get respite for the night you need at least.

I'm not sure which county you are in, but think it is fairly small, but as MIL is self funding, have you looked at homes in neighbouring counties, the other old Clywd counties or even the West side of Cheshire West and not sure how far away Shropshire is. Within half an hour's drive would seem OK for a respite drop off?

I know the one MIL has now is linked to DC but somewhere else may be good as well.

I know the home near us (5 min walk) has a 10 bed dementia wing as a colleague had to move her mum (from the sister home 5 mins away due to wandering/agitation/taking other peoples things), and has said her mum is much more settled as staff can cope with her behaviour (VD) so much better. She was told of others nearby by original home - as they didn't know if their sister home would have space.

 

[Essie]

That's not fear though, Essie, is it? It's distress at a (supposed) death. ? But yes, you're right - i'm being a bit simplistic. I think I tend to downplay MiL's state because my sympathies are with Ann and I often get worked up on her account. I'm sure we all do but most people are more mature than I am…

Hmmm, no, will have to agree to disagree on the 'fear/not fear' thing.

I'd say everybody's sympathies are with Ann! I did wonder if it sounded bad when I say 'ignore' Mil's 'tantrums' but I suppose I more mean don't engage with them, if that's possible, partly in a probably vain attempt to avoid escalating them/giving them legs but more because less interaction would hopefully mean slightly less effort being expended by Ann, which can only be a good thing.

 

[Slugsta]

Oh (((Ann))) my tears have added to that lake. For every little thing to become such hard work, when you are still unwell, must feel like an insurmountable obstacle As you say, the fact that such an unsettled evening is now considered 'good' shows how far that line has moved. I'm so glad you have been able to book some respite and can now look forward to the show. I'm also glad that you have a more immediate spirit-lifter planned, I hope you have a great day tomorrow (and that you are pleased with the new hair-do).

The fact that RAnne has such an awful time with little help is truly appalling - but the fact that someone else is also going through hell doesn't make your situation any better!

What has our society come to, when the state pays billions of £ to bail out the banks; when multinational companies are allowed to keep the money they should be paying in tax; when footballers (and the like) are paid thousands of £ every week but the old, sick and vulnerable are left to fend for themselves, or in the care of families who are unsupported and exhausted,because there is no money in the public purse for their care?

 

[Ann Mac]

Morning everyone,

I've tied myself in knots, trying to work out what provokes/causes aspects of Mil's behaviour, coming at it from the point of view that if you can understand why something is happening, then you have a fighting chance of doing something about it. Trouble is, working out why is so difficult when Mil's reaity is about 99% delusion based, and that in turn can make her fearful, resentful, paranoid, angry - and always certain that she is completely right in what she believes, and very resistent to any sort of reassurance/distraction/comfort you try to give. I've felt like Red, thinking that the anger is being used to mask her fear at times, and at others I've felt that its not so much that she is using anger, as that anger is her guenuine response to what she believes is happening, just as fear can be, as Essie suggests. And also, as Essie suggests, trying to show her any sort of support and comfort, or trying to reason with her or even argue, seems to be pretty much pointless - any interaction or response, even a negative response, simply fuels whatever her mood is, causing it to get worse and almost seeming like it gives whatever the delusion is a stronger hold on her. I maintain that 'going along' with the particularly 'upsetting' beliefs is the worst thing you can do, despite everything that compassionate communication advises. Rather than belief and sympathy reasuring her, it just reinforces whatever the current fear/belief is, and the anger/distress grows. Time and again, I've found the best option is to remove Mil or us from her immediate environment, and it seems to me that whilst it doesn't always work, often without any response/reaction, without anyone for her to rant at or plead with, whatever it is that she is in a state about can be very quickly forgotten - no matter how upsetting it was at the time. And although its often difficult to just 'walk away', especially when either something very provocative and insulting has been thrown at you you, or (even worse) when she is sat breaking her heart crying with what to her is obviously vey realy worry and fear, I think we have to accept that this is the best way to bring upsetting thoughts (whatever the cause) to an end.

JM, I've asked about services/homes in near-by areas and keep getting told that 'places are limited to non-existent' - its obviously something I need to look at again!.

You know Slugsta, at the moment there are two issues in our local area that have caused quite a lot of argument and debate - one is that absolute millions are being spent on what will be Europes biggest prison, being built in this county, and the other is the issue I mentioned the other day - £5M been allocated to create an art hub. Lots of accusations on how 'short sighted' people are not to think of the 'long term effects' of either project, whether it be from the perspective of a supporter or a protester to either of these issues. I've had various friends inviting me to protest meetings or support meetings, and I have absolutely no patience with any of them and have started to reply with a comment along the lines of 'To be honest, I am so exhausted caring for someone with dementia, 24/7, that I don't care. Now if you (or anyone else) wants to kick up a fuss about the lack of support resources for the elderly and ill in our society, then please do give me a shout - I'm too knackered to keep fighting solo, but I'd be interested in something/anything that involves persuading the local authority to part with a fraction of what is being spent on the 'Art Hub' or the 'Prison', to provide more than the one respite bed for the whole bl**dy county that we currently have. Considering how many of us are going to be impacted by dementia and caring in the not too distant future, I think the current lack of services and funding is actually the truest example of 'short sightedness' that is happening' Oddly enough, that seems to kill any conversation stone dead. As you say, there is something very, very wrong with a society that is OK about spending millions on what are essential 'wasted' or 'non-essential' causes, but which ignores the needs of the sick and the elderly.

Well, I am most definitely a member of the very short hair brigade now - I walked into the hair dressers with a couple of pics that my girls had apporved and said 'Something like these please - whatever will need the least maintenence!', and I let her get on with it. So from hair that was just below shoulder length, its now barely halfway down my neck, heavily layered and very different. Convenience being the most important issue for me, it is nice that youngest and OH both saw it and announced that they thought it was 'lovely' and that it really suits me, so I'm happy. Feels very odd, though, I must admit!

As well as managing to get respite, the meds were quite easily sorted yesterday (yay!). On the surgery issue, the MP involved has announced that there is to be a public meeting. I've asked that we be given the 'facts' about why this is happening before the meeting takes place, so that we are not walking in to it 'blind' but so far, no response.

I picked Mil up to find her with her hair plastered to her head with sweat and her face cherry red, obviously very agitated - but was told she had been 'fine' In the car journey home, she repeatedly thanked me for getting her 'out of that place', but she didn't say why and I didn't ask! I was more than half expecting a bad evening, but in the true dementia style of you never being able to predict anything, she was actually extremely quiet last night, and very calm. The no barrier on the kitchen did seem to prompt more of the 'needing' to go in there for various imaginary reasons, but it was fairly easy to disuade her and there were no signs of even a mild melt down. Incredibly compliant with getting ready for bed and all quiet afterwards - now that to me, is a really good evening!

Not sure where we are heading today - the photo-buddy I'm off out with fancies plane spotting at Broughton, I'm hoping we can combine that with a walk by the river, heron and general wildlife spotting. Whatever we do, I'm looking forward to getting out!

Hope you all have a good day xxxx

 

[CeliaW]

Have a lovely day Ann x

 

[Batsue]

Ann, my mum is only at the early stages of AD but her response to most things is anger, almost every conversation with her ends in an argument with her, leaving me wondering how we got there. I usually then distance myself (I have now got a camping chair in the polytunnel for if it is too wet in the garden ).

I also joined the very short hair brigade, it makes drying it so much easier and everyone except mum has liked it (mum says I look like a bloke, usually when I have suggested that she wash her hair ).

Have a good day out xx.

 

[1954]

I have now gone for short hair too as its easier. Mine is so curly I do nothing with it!


1954 x

 

[Ann Mac]

Like yourself, reedysue, I find and have found for a long time, that even the most seemingly innocuous of topics can end in an argument and anger with Mil - I've just posted on another thread that me revealing that I know when her birthday is prompted a rant and a moan about how I know too much about her and how she has no privacy

Thanks Celia - I intend too

1954, my hair tends to wave rather than curl, but this morning, all I've done is run my fingers through it and youngest greeted me with 'Morning Mum - your hair looks so nice' - so I'm pleased at the lack of fuss that's involved!

Mil's complaining again about that 'odd' pain in her bottom - this time she is insisting its from where that 'nasty girl' kicked her. No bruise, no redness, no swelling, and again, the pain she says in actually in the 'cheeks' rather than in her hips or back or the tops of her legs. It just seems such an odd place to feel discomfort, without there being some sort of injury or obvious cause. I've given her paracetamol and hoping it helps.

 

[LYN T]

Ann, I'm glad you and your family like the new hairdo

Re. MIL's 'sore bottom' Reading back I know that you said MIL needed the toilet urgently (I think over the weekend). Are her bowel movements ok?

Have a good day out. I saw a Heron yesterday

XX

 

[Grace L]

Morning All...

Good news, went shopping yesterday with MiL and she 'chose' (with me ) a new set of house phones.
Niece and her X are going over at the weekend to install them.

He's also going to put up some planters and troughs I've bought her for Mothers Day.
X and Niece are giving her some plants, and while he is installing new phones, she and her Granny can plant up the new additions, and keep busy. Hope its dry for a couple of hours.
I've bought the kids mini watering cans, so they can water the rest of MiL garden, whilst all this is going on.

MiL only has a courtyard patio garden , with a little U shaped plant-able border .
I've bought 2 troughs for the front and 2 for the back....
Her neighbour has something similar already , and MiL said she wishes she had some ...
MiL does not know about these, so I hope on the day she is still pleased.
She will have to remember to water them...



I'm so glad about respite AnnM xxxx
When I was at Collage, a friend had a boyfriend who was in a production of Joseph.
He's now a well established Actor. He's done kids TV, comedy's, some films.... and on TV all the time.
We all lost touch after A's, and I did move home as well, but I've never forgot him.


AnnM..... You have done such a great job Ann , but I wonder, ...
You said you have been in touch with your MP, but would it be worth talking to the other MPs in your area?
even if you are not going to Vote for them, or support them, you could speak / email them.
You were wondering what (if anything) else you could do, having exhausted all avenues.

Do you think MiL pain in her bottom could be Sciatica?

Take care xxxx