The Fogotten People and their Carers

[snowie123]

Having found this forum and reading the stories of the struggles relating to Alzheimer/Dementia sufferers and their families I would like to add my personal experience with my Mum.

She developed the Disease about three years ago and ever since that time I and Hugh James have been battling with our Local Primary Care Trust to recognise their responsibilities for contributing to the overwhelming cost of care.

As far as im concerned this condition is a ,Health need' and NOT a 'Social need' as im repeatedly told.

This is a Terminal illness with no improvement ever likely and day and after day I watch her decline and withdraw to the point of taking breaths and aware of little else.

How as a Caring Nation how we ever got to this stage Im at a loss to comprehend and its about time we stood up and had our voices heard instead of being fobbed off with Eligibility Criterias !!

Too much money is wasted in the NSH as a whole and I see it everyday.

These people as did my parents paid a great deal in their working lifetimes to make sure they were cared for in an appropriate manner , but it now left to their families to put the bill for Care for the Elderly and Weak.

Does anyone else feel the same and is it time we rallied and shouted Enough!!!!

[JackMac]

oh thank god! I've been ranting about this for days! Thank god I am not alone!

I read this article a few days ago

http://www.dailymail.co.uk/news/arti...lingerers.html

Terry Pratchett echoes what you have said. I had not even thought of it this way until I read this.

So far, we have been lucky enough to have mum's 2 days at daycare paid for but that was after endless paperwork and phonecalls. We have had a poor service from community mental health teams so far, most people don't even bother to return our calls.

Now we may have to use night sitters and I'm just waiting for them the give my poor dad the bill. Maybe I will be wrong but I doubt it.
But even if I'm not, I want to fight for everyone who is paying for this MEDICAL condition! If they had cancer, everything would be paid for by the NHS. And yet dementia is terminal too.

I have written to my local MP who is based in London. He rang me today and is going to set up a meeting where he wants me to come up with ideas about what I want him to do about it all. He agrees with everything I said.

We need to campaign for Dementia sufferers and their families to be treated on the NHS, the same as everyone else.

so in answer to your question .... YES, I feel the same and I don't plan on letting this go!

thank you for raising this!

[snowie123]

Thankyou for taking the time to read and rely with the interesting report from Terry Pratchett, It gives me heart to carry on .

My Mum was at home being cared for , but the decision was taken away from me by Social Services and I was told she had to go into care or I would have looked after her with the help of a nurse who I was prepared to have live in .

Be aware it gets worse and so far I have paid around £ 78k with no help from the Primary Care Trust and im concerned what is going to happen to her when the money runs out.

Will she be stuck in some God Forsaken place that I cant get to ?

I will persue this till the end and any help and advice will be most welcome .

[JackMac]

Hi again

My sister found this site..

http://www.bbc.co.uk/blogs/theonesho...m_back_ca.html

I haven't had a good look yet but from what she told me it covers what you are talking about. Many people have claimed back money.

I am getting the impression...and I do understand why... that many are too tired to fight the goverment on all of this. People don't have time and lets face it, they should not have to. But if we keep quiet and just carry on accepting all of this, nothing will ever change.
Personally I feel that I dont want to let this go now I have started. I feel the same as you in that I want to stand up and make them listen to us for once. If our relatives had cancer, there would be no issue, care would be paid for. And yet our relatives have a medical terminal condition.
If people sent me their stories, I would be prepared to camp outside number 10 with these stories until they did listen!
My fear is that not enough are going to speak up and so the government continue not to listen.
I wrote this post a while ago
http://forum.alzheimers.org.uk/showt...787#post540787
and had zero response to it.

jackmac

[snowie123]

It does appear that the attitude toward this illness is less than volatile and dare I say the families have little support in acheiving their basic Human rights.

Its almost as though weve been told to be quiet and accept that whatever is laid out is how its going to be !

There is maximum support for the young and families which is fine but still little or none for the age group we are lets face it fast approaching it scares me sick I have to say.

I have contacted my MP and aquired a meet . Will be interesting to list the excuses he gives .

[KTY]

Count me in!!

My mum was diagnoised with EOAD last year at the age of 64, sadly she was mis-diagnoised years prior to this with epilepsey, so by the time the right diagnosis came it was too late to do anything for her. The only reason we finally got the right diagnosis was by paying private fees for a consultant to review my mums earlier MRI scan. We paid out a considerable amount of money to get the diagnosis we never really wanted, but we kept saying to all the consultants we were not convinced she had epilepsey!! really I know funny that.. My mum worked for the NHS looking after vunrable adults for years and she did an amazing job. So why is it that not only did my parents have to pay to get the truth, and they were uanble to rely on the NHS which mum had offered years of great service, NOWWWWWWWW she will no doubt very soon be moved into a care home and have to pay considreable costs towards it LOL brilliant what a laugh!! I would love to see more questions being asked about what is being done to help people with this awful disease and their carers, don't just write them off, they are my parents and they are important to me so they should be important to others..They deserve better than this. So I will sign what it takes, stand where is needed, shout the loudest I have nothing to loose I have already lost my mum.. Please count me in, let me be the one to shout from the roof tops, if nothing else it will make me feel better, and I think I am lound enough for people to hear.

It would be nice to have one day where I am not reading or investigiating something anout AD in order to try and help my mum and dad, I didn't relaise it was my job to offer them all the information, support and at this rate establish a cure.. NHS do we really need you, I am a one man band at the moment where were you, where are you??

[Jancis]

Count me in too. It's the whole system that's responsible and governments simply don't get it because dementia is a mental health issue connected so conveniently to an increasingly ageing society. Dementia is not understood, the causes are not understood, caring for dementia is not understood. We need so much more research - I wish I could help.

My uncle is one of the luckier ones. He has been diagnosed with frontal lobe dementia and psychotic depression. He had a lucrative career (in the oil industry) and his wife worked as a legal secretary - they were not blessed with children. My uncle, who is now a widower, has enough savings to pay for his full time care - the best care available. But I had to fight the system tooth and nail for 2 years to ensure he could have this. Because he was written off - his psychiatrist said it didn't matter where he lived he wouldn't understand or appreciate it - he was placed by the authorities (or should I say dumped) in a hell hole nursing home.

I have an aunt who is the same age as my uncle (not related) who is free from dementia but has umpteen physical health problems - she seems to be getting so much more from the system (god bless her too).

[chubbyhubby]

We have been given the idea that those years have been left behind and in most ways they have But when it comes to carers and Dementia THIS IS FORGOTTEN. My dear wife has Frontal lobe Dementia a history of 4 years up to date is frightend, hair falling out, repeated questions your not mad with me,i haven,t done anything wrong, i try hard Dave but always tells me she loves me are also has that dredded depression.N.H.S there answer Oh well it,s the dementia. No one really cares. Also no one sees her and everyone knows that she will not go to them so it,s down to us the carers. Add on to that we have no choice how we end our lives unless we pay a fortune to home care owners,just think what would happen to this private section if in future we had that chioce. In stead we are treated like we have a deases and must be put at the bottem of the pile. I agree with all that has been said. chubbyhubby.

[snowie123]

Every day I read your stories and comments after writing my first tentative note on here and im forever amazed how we are all linked to the this appalling lack of interest by the Government and the financial scam put in place to make our loved ones suffer over and above the horror of this disease.

Its almost like the Nineteen hundreds when the patientswho in actual fact were probabling stricken with Dementia and classed as 'mad' were an embarrassment and locked away - out of site out of mind.

We as a nation would like to think we have moved on and are compassionate and caring but in truth we are no further forward than those dark days .

We have to try and turn the tide and its my belief by being proactive and noisy about this , and shaming publicly those at the top will we ever turn this around.

Nice DOESNT work !

[lin1]

We have to try and turn the tide and its my belief by being proactive and noisy about this , and shaming publicly those at the top will we ever turn this around.

Nice DOESNT work !

your dead right their

I used to get very noisy on my mums behalf when needed, so would dad
Im still doing things where I can

but I think its awful how our sick and vulnerable are treated or should I say not treated