Do you (sadly) have experience of dementia?

Mrs B

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I do, I'm afraid as I cared for my Dad at the end of his life. He had Lewy Body dementia, which also caused Parkinson-like symptoms and hallucinations.

I am trying to help the charity which helped me and Dad so much at this awful time and if you look at www.understandingdementiafilm.com you'll see what I'm trying to do and why.

Even if you can't help (and I quite understand if you can't!), if you think of anyone who can, please pass this link on......

Thank you - many, many times! :) Kate

PS Do forgive me, but I'm going to post this on the New Lounge board too - the more people who see it, the better x
 

{51248}

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I do, I'm afraid as I cared for my Dad at the end of his life. He had Lewy Body dementia, which also caused Parkinson-like symptoms and hallucinations.

I am trying to help the charity which helped me and Dad so much at this awful time and if you look at www.understandingdementiafilm.com you'll see what I'm trying to do and why.

Even if you can't help (and I quite understand if you can't!), if you think of anyone who can, please pass this link on......

Thank you - many, many times! :) Kate

PS Do forgive me, but I'm going to post this on the New Lounge board too - the more people who see it, the better x
Sadly, I do have such experience, also in the case of my father, but not from so close at hand as yourself.
 

CrazyMare

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Sadly yes, I've spent the last 12 years watching this disease slowly take my Grandma. Now, my Grandad is showing signs of dementia alongside advancing Parkinsons.

Its horrid, tough and isolating.
 

Mrs B

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I am sorry to hear that, Pakkasham and CrazyMare. It is the pits and I do so sympathise. It's like losing someone bit by bit, isn't it?


The book 'Contented Dementia' by Oliver James is brilliant - uses the SPECAL charity's method and explanations of how to communicate and calm someone with dementia. Gives you a plan and a way to get through an awful time and makes you feel less helpless.

If I can offer any help or advice or you just want to 'download' please feel free to pm me anytime....
 

Flibble

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I am experiencing this with my mum. My cousin unhelpfully tells me that the females on my mothers side are susceptible to this as two Aunties have suffered with this and one of them nursed my gran before she passed on both are now sadly gone.

In my case noone has specifically diagnosed my mum and my brothers appear blisfully unaware as my mum was always a little vague. To me it is staring me i n the face as if she had a blue light flashing on her forehead. I have not specifically spoken to any doctors about is as there is a whole heap of other issues going on and I cant even cope with thinking about it.

But the little old lady I go and visit in hospital still knows me but she isnt really her any more.
 

Rosehip

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My fake Grandad (hes my mums cusion's husband - so much easier to say gandad!!) Is in a home with advancing altzimers (sp?) he's still fairly lucid at the moment, and can dress himself etc - sometimes wearing his pj top with his trousers etc, but for the most part isnt too bad...hes very forgetful, and can be a teeny bit agressive sometimes, but is more tearful about his forgetfullness than angry. In a way it will be better for him when he doesnt remember that he has forgotten (does that make sense??).
He has had to have his waste paper bin taken away as he uses it as a toilet in the night, and gets quite loud about the fact that his "comode" has been stolen! You have to laugh about those sorts of things, or you would cry!
 

Mrs B

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As long as she knows you, Flibble, you are doing it right!

You may find that it is worse in hospital too - Dad got dehydrated when he was in because (before he was diagnosed) he had broken his leg. He was hallucinating and not really conscious. It also turned out he had a chest infection and that also made the symptoms much worse, plus he reacted very badly to the opiate painkiller he was put on, so bear this in mind if she does appear worse.... it may ease off if/when she (hopefully)comes out of hospital.

It may be that you are being brave in recognising what the underlying problem is, but your brothers just can't face the truth, so they pretend nothing is really wrong.....

Sorry. None of this makes it any easier, I know but as I said to pakkasham and CrazyMare do pm me if it helps in any way.
 

Twizzel

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My great aunt has vascular dementia (caused by strokes, bits of the brain die off each time they have a stroke), it is a horrible horrible illness. She has gone within the space of a year from living at home just about coping (we supplied meals for her and visited 4 times a week), to living in a nursing home and hardly recognising anybody.

She lived with us for 5 months as a a way of getting her out of her home, and then progressed onto a nursing home when we couldn't cope anymore (she would wake us up 4 or 5 times every night getting dressed or walking around the house and the lack of sleep started to affect my work at uni, brother's school work and family relationships)... she started to get violent too when things didn't go her way (e.g. we told her at 3am she had to go to bed and she didn't want to). She is a different person now, completely the opposite to what she was and it's horrible to watch. I don't like visiting her but have to just so that she recognises me as she has had many a family friend visit her in the home and she hasn't recognised them... she doesn't even know who she was married to for over 50 years :(

What makes my blood really boil is that she gets no funding for her nursing home fees despite being diagnosed as mentally ill and unable to live at home anymore... it's disgusting IMO.

Good luck with the project... it will so valuable to those who face caring for people with dementia in the future.
 
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Mrs B

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My fake Grandad (hes my mums cusion's husband - so much easier to say gandad!!) Is in a home with advancing altzimers (sp?) he's still fairly lucid at the moment, and can dress himself etc - sometimes wearing his pj top with his trousers etc, but for the most part isnt too bad...hes very forgetful, and can be a teeny bit agressive sometimes, but is more tearful about his forgetfullness than angry. In a way it will be better for him when he doesnt remember that he has forgotten (does that make sense??).
He has had to have his waste paper bin taken away as he uses it as a toilet in the night, and gets quite loud about the fact that his "comode" has been stolen! You have to laugh about those sorts of things, or you would cry!
My dad thought (while watching his beloved Arsenal) that he had just had a long conversation with the ref in person and that the whole stadium was in the sittingroom!:D

Rosehip, your Grandad is tearful because he knows very well that something is seriously wrong but he doesn't always know what. And emotions stay with dementia sufferers even when the REASON for that emotion is forgotten. The aggression is probably because he is scared and the world makes no sense.

If you can agree with him as much as possible it will help. For example, it is soooo tempting to say to someone with dementia that they are imagining things - everything is alright and try to prove it. This doesn't work as to them it's NOT imagined - it's a real as you are! So, if for example, a sufferer says: "someone's stolen my purse!" instead of saying :"no, they haven't" try saying: "That's awful! You leave it with me and I will sort it out"

You will see them relax - you have confirmed that they are NOT going mad, you have said you will sort it out, they - as a result - feel happy and relaxed. They may then well forget what happened BUT be left with a feeling of contentedness, not anxiety.

Hope that makes some sort of sense!:)
 

Mrs B

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My great aunt has vascular dementia (caused by strokes, bits of the brain die off each time they have a stroke), it is a horrible horrible illness. She has gone within the space of a year from living at home just about coping (we supplied meals for her and visited 4 times a week), to living in a nursing home and hardly recognising anybody.

She lived with us for 5 months as a a way of getting her out of her home, and then progressed onto a nursing home when we couldn't cope anymore (she would wake us up 4 or 5 times every night getting dressed or walking around the house and the lack of sleep started to affect my work at uni, brother's school work and family relationships)... she started to get violent too when things didn't go her way (e.g. we told her at 3am she had to go to bed and she didn't want to). She is a different person now, completely the opposite to what she was and it's horrible to watch. I don't like visiting her but have to just so that she recognises me as she has had many a family friend visit her in the home and she hasn't recognised them... she doesn't even know who she was married to for over 50 years :(

What makes my blood really boil is that she gets no funding for her nursing home fees despite being diagnosed as mentally ill and unable to live at home anymore... it's disgusting IMO.

Good luck with the project... it will so valuable to those who face caring for people with dementia in the future.
Oh Twizzel! It is horrible to see and what I found made it worse was when I was tired and dad had got up AGAIN in the night and got dressed telling me it was breakfast time and the sun was shining (at 2am!) and then you feel resentful as well as tired, and THEN you feel guilty that you feel resentful etc etc!

If you see what I wrote to Rosehip, you'll see why the aggression can happen. The distant past will still be in her mind somewhere, but as she doesn't trust her current ability to remember, she is reluctant to revisit past ones and has mentally 'turned in' on herself. If you want to pm me I'll try to explain more and think of ways you might be able to re-connect with the old 'her' and help her unbury some good memories.

I know - funding is a nightmare! Dementia seen as a social rather than mental/medical problem. :(

Thank you for your support - I had such help throughout my caring for Dad from SPECAL - I just want to pass that help on if I can :)
 

Twizzel

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Oh Twizzel! It is horrible to see and what I found made it worse was when I was tired and dad had got up AGAIN in the night and got dressed telling me it was breakfast time and the sun was shining (at 2am!) and then you feel resentful as well as tired, and THEN you feel guilty that you feel resentful etc etc!
Oh I recognise that situation well, we would be disturbed maybe 4 or 5 times each night by her telling us it was morning and time to get dressed. Then we got annoyed because of the lack of sleep but then felt guilty during the day that we got mad, then went to bed the following hoping for a quiet night for it all to happen again. 6 hours of sleep was a rarity and I'm used to 9 or 10 hours so it really began to affect me in the daytime- I fell asleep in lecturers, and brother fell asleep at school! And when the aggression started unfortunately my aunt would not only be physically aggressive, but mentally too and would often accuse people of doing things and say very offensive things about members of the family (including both myself, my parents and my brother)... then we got mad/upset, and then the guilt starts again as it isn't her inside her body anymore. Possibly the hardest thing I've ever had to face, the constant circle of emotions!

We have tried photographs and talking about old times but it doesn't really work so if you have any other ways we can get her to remember things, I'd be so grateful if you could share them :) The problem is she is very deaf as well so it is pretty much impossible to have a conversation, she will not read anything and does not want to take part in any activities, just sits in the same chair every day watching people pass her by.
 

Mrs B

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Twizzel, I'll pm you later as I have a few questions, which'll help me think of what you can try next.... :)
 

MurphysMinder

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Lost my mum to Vascular Dementia 2 years ago this month. Its a horrible disease, for the last year of her life she didn't know me, for the last few months she was just a shell.:(
 

Zoisrus

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I don't think anyone who has not had first hand at living with and caring for a dementia patient can ever realise the full extent of the stress and toil it takes on the immediate carer/s. And that includes the GP and the Mental Health experts.

I have watched my mother on a downhill slide for 8 - 9 years now, noticeably starting after a hugely botched hip replacement op at The Countess hospital in Chester. Four years ago I went to her GP and begged and pleaded for the GP to speak to my mother tactfully about her decreasing memory and increasing hallucinations. The GP refused, instead sending around to my mothers house unanounced, a physciatric "team" which was like a red flag to a bull. As you all know to a dementia patient there is nothing wrong with "their" memory, she just thought they had come to lock her up and since then will have nothing to do with any suggestion of help.

One thing Kate mentioned was her father reacting to opiate based painkillers that increased his hallucinations. Of course they do, it is one of the warnings in a packet of Co-Drydamol or other coedine based medications. But my mother's GP dispensed those to my mother like sweets. Mother's hallucinations were so bad she was calling the police at all hours thinking she had been abducted and so on, the police contacted her GP who said it was "out of her hands, and nothing she could do"! I found dozens of empty boxes of Co-drydamol in mother's house and noted on the dates of prescription some were only 4 - 5 days apart. Mother had been taking instead of the max 8 a day, 20 - 30 a day!!! I told her GP who said they are "innocuous painkillers and nothing to do with mother's mental hallucinations".

How different the initial diagnosis and care of dementia patients is in the UK to that of other countries. We have friends and family in the USA all affected by this yet the patients are treated from the outset with respect and dignity, not ignored until they are so far gone it is pitifull. I care for my mother daily, she cannot take medication herself, she cannot look after her own personal care, cannot prepare a basic meal. Yet I cannot get any help at all from social services etc as my mother in their words "presents well and is very convincing she can look after herself". Human rights and all that. As mother can say, repeatedly like a parrot "I am fine". She has been in hospital 4 times now in the past 12 months for cardiac, and spinal problems, even the ward staff and doctors there were shocked at how bad her hallucinations are, and her awareness of reality. The last time a month ago mother thought she was in a really bad hotel in America!!! They said she was not fit to be sent home mentally yet the physciatric "team" said they refused her a bed at the EMI geriatric hospital because she said no she did not want to go.

Sorry for the essay but the treatment of dementia in the UK is disgusting. I had always heard but you never think it will be as bad as that until it happens to you.
 

Mrs B

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I am sorry to hear about your Mum, MurphysMinder. It is an awful disease.

As Zoisrus says, even getting a diagnosis and the help you need is often an uphill struggle. Made so much worse when the very people who are supposed to be there to support, help and guide you do the opposite. I am afraid I have heard just too many stories like this.

Caring for someone with dementia is tiring and draining. You know it could go on for years and you know it's only going to get worse, so you tend to have no strength left to tackle the treatment you and the patient get.

I refused to have the Memory Team for Dad in the end. Like Zoisrus' mum, he was mistrustful of them, bewildered by being asked what day it was and who the Prime Minister was. I knew very well what was wrong with him, so why upset him further? Luckily, they understood why I said 'no' and left us alone.

That's why I want to make this film: to get this talked about and widely recognised so that early warning signs are taken seriously and a diagnosis made. I appreciate is it not easy to diagnose, but at the moment it seems to be brushed under the carpet until a crisis occurs.

The SPECAL method works by formulating a plan for each person as soon as diagnosis has been made. A plan to achieve as much contentment as possible for both sufferer and carer as the disease progresses by understanding dementia and how the person thinks as their sense of reality alters.

Zoisrus - I take my hat off to you and send you a big hug. 'Tis an very hard path you're treading as anyone whose contributed to this thread will appreciate.
 

Twizzel

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The diagnoses is so hard to get, we had to fight for ages for my aunt to be seen by the relevant medical peeps. We were told that if they found vascular dementia it was a mental health issue not a social problem, as she was having strokes and it was not 'old age', and we would then get help with funding residential care... we put my great aunt through memory clinics (where she got increasingly annoyed/upset that she didn't understand what was happening), and CT scans, ultrasounds, you name it she had it and was found that she was having strokes... but still it was a social problem not a health issue and no funding appeared... disgusting IMO.

It got to the point with caring for my great aunt that the family was beginning to fall apart almost- we couldn't go out as a family unit as someone had to care for her, mealtimes were awful as her table manners were disgusting, my mum had to organise her work shifts around my aunt so always went to work at weekends, we couldn't go out for meals out or a walk on the beach and had many an argument, we all got very distant from each other. That's the side of dementia that people don't really think about until it happens to them and there needs to be more support for carers- we were offered a 'relief' carer from social services to come in and sit with her for an afternoon whilst we went out, but at £25 an hour couldn't afford it.
 

mizzhonesty

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I sadly do, my Granddad has vascular dementia, and towards the end I couldn't go and see him as I found it too upsetting seeing him in that state. He was always a proud man who would wear a shirt, tie and jacket to come over to our house for dinner, or go shopping or come and see me ride, so to me to see him slumped in a chair in jogging bottoms that didn't fit (we kept supplying big enough clothes for him but the home kept losing them) and a t shirt wasn't how I wanted to remember him. I didn't see him for about 6 months until the weekend when the hospital said he didn't have long left and I really wish I hadn't seen him like that as that's now all I really remember.

I don't want to cause a debate or a heated discussion, but I fully stand by my dads view if he ever gets anywhere near that stage he wants to go to the Switzerland. I do not believe my Granddad died with any dignity left and do not want to ever witness someone I love go through that again.
 

Zoisrus

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Kate I applaud you for making a film, and am grateful, it will not have a bearing on my mother's treatment now but for those to come in future hopefully it will bring about a change.

One thing I have found in the ignorance of GP's in the side effects of prescribed medication. Mother has been on a variety of medication for years, for heart and painful hips. Now some clearly state side effects : - hallucinations. When I question the GP it is always "oh that is irrelevant". There are alternative drugs though without side effects to add to an already disturbed mind. But probably the NH will not provide. Do GP's ignorance of medication side effects in the early stages of dementia in some cases exasperate the initial onset of the disease? Thinking here of commonly prescribed drugs for older people like opiate based painkillers, water tablets (furosemide); statins = memory loss, depression (which would go hand in hand with the paranoia dementia brings), sleep distrubance. Mother's GO had prescribe all of these to my mother for 8 - 9 years without regular check up's, in fact 18 months went by without the GP actually reassesing mother for any of the medication. They just keep writing repeat prescriptions.

On the subject of help. The cost of even hourly help is extortionate through social services or community care, and in my mother's case they refuse to provide it anyway as they say she is "too difficult". Why should the elderly be treated so shabily when they have paid taxes all their lives, kept this country free (my mother and late father were both old enough to have fought in the last war), in comparisson to all the child benefits, etc.
 

Mrs B

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I agree with you, Zoisrus. It is very shabby treatment. The whole approach needs a radical overhaul.

One of the people we will be interviewing is a GP in York who is also training people to train others in the SPECAL method. I am hoping that if I can get other GPs to see what he's doing (as it seems they don't always pay attention to lay-people!) it might help to change some minds and attitudes.

The other thing I like about the SPECAL approach is that they advocate the least use of drugs possible and then only appropriate ones. I think that many mental problems associated with dementias are not due to the disease, but due to inappropriate drugs and also inappropriate care and approach. Having seen how some dementia patients are treated, if I were unsure of my memory and constantly told that the world as I saw it was wrong, I think I'd go mad too! Or at the very least, cease trusting the world and those in it and turn in on myself.

As you also say, the cost of care is huge. And compare it to what I as a carer was deemed to be worth for a 7 day week (sure you know this!!) - £53.

And only if I could prove I couldn't work. :mad:
 

Paddywhack

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I have also been in your situation,my father develop Dementia after his second stroke. I kept having to close my eyes and remember that the man in front of me who suddenly became so different was still my father,but he was "gone" and it was the illness who made him what he was..we were very very very lucky with his care and medication,but it was still a very stressful time for the whole family :(
 

Mrs B

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Mizzhonesty, I am very sorry that that is the image you still have of your Grandad in your head.

I found that my dreams were full of Dad with dementia which left me waking to find I was crying. I decided to keep pictures of him available as I remembered him when I was a little girl and have gradually found that that's how he now appears in my dreams.... Except I am always then surprise to find I've aged 35 odd years:D

Worth a try, though...

And Paddywhack, my sympathies. I think the hardest thing is having to reverse the child/parent roles....
 

Quadro

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Very quick reply but i am a demetia nurse and work with sufferers every day, i applaude your efforts its such an overlooked illness!
If you have any queries please pm me and ill do my best to answer any question you have on the illness (i have also had personal and well as professional experiances!).
xx
 

Mrs B

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Very quick reply but i am a demetia nurse and work with sufferers every day, i applaude your efforts its such an overlooked illness!
If you have any queries please pm me and ill do my best to answer any question you have on the illness (i have also had personal and well as professional experiances!).
xx
Thanks Quadro! I'll do that.... :)x
 

Mrs B

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Please forgive me, everyone, for bumping this up again. I just wanted to thank everyone who has responded to this and donated. We are over halfway to our target and I am soooooo chuffed! It seems that there are a lot of people out there who are in need of help and I do so hope that this film will do that.

It's one of those diseases that you never want to see or be involved with, but, sadly, most of you will be at some point.

Right! That's enough of that! Back to the bar on the soapbox thread....

Mine's a HUGE G&T.... xx
 

Lobelia_Overhill

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My Da started to develop a form of dementia several years ago - only I didn't realise what it was. He started fretting about money every now and again, the episodes got more frequent and lasted for longer. I told our GP that I thought he had dementia and the doc gave us some meds for him and nothing else was done.

He got progressively worse and worse, and I was also caring for my mother who may or may not have schizophrenia, whatever is wrong with her, her behaviour while my Da was alive was deplorable (he died at the beginning of this year). I was in a helluva state and getting desperate for help or respite but nothing was forthcoming, our Nurse was a waste of space who dismissed everything I said with a cheery "talk to your family" which member, the one who told me to go *uck myself or the one who called me a c*nt and told me to *uck off when I asked for help?
Eventually someone told me to speak to Dr so and so as he's very good for dealing with old people and I found out that I was supposed to have a Social Worker, she came to see us and spoke to my parents about going to day care (Da refused completely) or getting a Home Help (the Mother nixed that idea), after several weeks she managed to persuade them to go into respite for a while, and I managed to get away for a holiday. When I came back the 'rents were back home, Da had kicked off big style in the Home and eventually they gave up and called one of my brothers who came and took them home.

For weeks after Da was in a strop, he was cursing and swearing and being very belligerent - eventually I realised he thought he'd been put in prison so Mother could divorce him and get married to someone else!

He started hallucinating quite badly - he used to see people in the house and it got quite creepy at times. Then he went through a phase were he thought he was back in the Army during WWII. One evening he threw himself off his chair and started trying to crawl under the coffee table (I had to laugh at that one!)

Fortunately the Nurse finally got it through her thick skull that my brothers were NOT going to help me out in any way shape or form and I was given Home Helps.

Six months later Da passed away.

My health went down the tubes while I was looking after him, and I'm still recovering, I've recently had a really bad bout of the flu, I think my immune system is shot to bits!
 

Mrs B

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You poor old thing! What a dreadful situation - with no one to listen or support you - they all need a good slap :mad:

Is your Mum still alive?

And I'm sorry to hear about your health - I'd put you on Red Cell and turn you away for a while for some peace!!

Seriously, I'm not surprised. Been exhausted and worried all the time (and angry because of your brothers etc) is bound to take it's toll on your immune system...

*hugs*
 

YorksG

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There ARE issues of human rights involved with the right of people to refuse help within the home. There are also issues of confidentiality and the LEGAL requirements of the care teams to not take the word of family members. Take the age out of the equation, would you want your GP to discus your health issues with other members of your family, without your knowledge or consent? Being over 65 does not strip you of those rights. If someone with dementia is detainable under the mental health act, or they have given a lasting power of attourney to a family member, then the care they need will be given, if they retain the capacity to make a particular decision then they have the right to make that decision ( the mental capacity act is there to protect people from having the decision making process removed from them when they do have the capacity to make choices).
This is a difficult area and I have seen this from both sides, having worked in mental health (as an Approved Social Worker) for many years and having a grandmother who died of dementia) People do have the right to refuse help, and I will fight for a long time to maintain that right.
 

Flibble

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Human Rights can be a double edged sword. My mother sent her carers away and told them she didnt want them anymore even though she couldnt get in or out of bed or cope with using the stairlift on her own. They said they couldnt come back unless she asked them and by the time we found out what was happening she had another bad fall.

When the doctor came to see her before crushed vertebrae were diagnosed from one of her falls she was in agony. Doc asked "How much pain are you in" Mums reply "None at all it doesnt hurt a bit".

My sister was there and said "But it does hurt Mum" she said "Its only agony if I try to move!"
 

Mrs B

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As you say it is a difficult area.

The problem I have with the Mental Capacity act is I would say it depends on how you define ‘Capacity.’

It seems to me that once someone develops dementia they are very aware of it. They will invariably try to hide this from their family and any medical professional for as long as possible and are very good at disguising their condition from outsiders.

However, it is the family who will notice that there is a problem at first, even if they try to make excuses for the change in behaviour to themselves for a while, not wanting (understandably) to think that it might be dementia.

When it becomes apparent that something is REALLY going wrong, the dementia has been present for quite some time and the sufferer’s mental capacity is already diminished.

I think if you look at Zoisrus’ story on this thread, it demonstrates to me that this is an area that needs urgent and serious reconsideration.

And I have just seen Flibble’s reply too. Here, there seems to be no Lasting Power of Attorney and God forbid those involved were sectioned, as that would mean an avoidable crisis point had been reached.

So we are left with the middle ground where there seems to be no help and guidance for families who wish to do their very best for their parent but who are stonewalled and prevented from doing so because of rigid adherence to the Mental Capacity Act.

I do so agree that where possible, everyone should have choice and I agree the law is there to protect people. But at what point does giving choice to somebody who, by the very nature of their brain disease, cannot have the full facts and thought processes in place and will inevitably keep saying: “Leave me alone! Go away! I’m fine!” become a destructive and cruel thing to do?
 

Flibble

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We are loking into the lasting power of attorney it is less straightforward than it used to be. It would have been easier if we had arranged it before we knew we needed to!!

What wakes me up in a cold sweat in the middle of the nights when I do sleep is that my mum has signs of dementia her sister had it badly as did another sister who prior to succumbing had looked after their mother who also had dementia.

My cousin tells me it runs through the female line on my mothers side so what hope is there for me!!

Oh God do I know the go away leave me alone I'm fine!!
 
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