347 replies to this topic

[thunderstorm]

Sorry to hear of your news mate. Please don't elaborate further unless and until you feel able to do so and are full comfortable with doing that. I find Daryl's posts on the subject incredibly brave but somehow encouraging in the way he finds his way through the barriers and obstacles it throws at him. If ever you attend one of the Mecca meets, like the one we are having next Saturday it would be really good to meet you in person and say hi to a local lad. Well done for posting what you did; I suspect your mouse hovered over the Post key for sometime before finally clicking; I think you made a courageous but worthwhile decision there and you will find the membership incredibly supportive.

All the best for the future.

Gazza

Thanks Gazza,
You live in Gloucestershire also?
Where is this Mecca meet on Saturday?
Sorry all the questions.
Yes I did pause for quite a while before I pressed post, and I did keep this to myself for a few months but told Daryl a few weeks ago.

[Daryl]

Thanks Gazza,

Yes I did pause for quite a while before I pressed post, and I did keep this to myself for a few months but told Daryl a few weeks ago.

... and no, before anyone asks - I didn't forget he had... I kept his confidence. lol

[Daryl]

For those of you who are Facebook members, please click the following link - you will get 10 FREE Alzheimer's wristbands from the Alzheimer's Society, if you message them your address:

 

Show them, and me personally, your support - thank you xx

 

 

https://www.facebook...Team?group_id=0

[Daryl]

It appears now that doctors aren't treating people in some parts of the country, because there is no cure and it is a waste of time, according to the news...



...f*****g disgraceful in my opinion - just because we can't be cured, doesn't mean to say we haven't a right to a quality of life!



http://www.bbc.co.uk...health-21009458



Ashamed and angry doesn't even come close!

[samson81]

Absolutly disgusting to read that daryl,

 

Everybody no matter what illness needs to have equal treatment and care wether curable or not!!!

 

I suffer from a very bad back and asthma but i get better treatment for my back then i do my asthma, I get so confused sometimes i wonder how they think treating my back is deemed more worthy then treating my asthma (which is quite controlled and has been for a while) that could cause me to loss of life ?

 

This government/health system is fecking crazy no wonder so many people are depressed or mad when real illness's get pushed aside.

 

Not being funny but i bet the government can afford to put money into cerebral palsy and epilepsy (what david cameron's son died of) for care and treatment but not others like dementia and Alzheimer's ?

 

Its not the National Health System anymore its the "We Choose Who We Want To Look After System"

[jim2311]

I have just read the article and I’m a little confused (hope that’s not a sign)

It states, for example, that in the north east of England only 50% of those with dementia have been diagnosed as having dementia. How can they possibly come up with a figure like that? Unless you test the whole population then this is purely an estimated guess and scare mongering.

It is easy to make numbers say what you want them to say… We all know that 6 out of 7 dwarfs aren’t happy…

I detest this kind of survey, it puts Doctors and all NHS staff in a bad light. How can a diagnosis be made if the patient, or their family, has not sought medical advice.

A few years back it was claimed Scotland had the highest level of Asthma in children, in Europe. I argued that it may be that Scotland is better at diagnosing the condition, and that the article should have read …Scots leading the way in Asthma detection… It puts a completely different complexion on the whole story and instead of the “Shout Brigade” being up in arms over the story, the Scottish NHS gets a pat on the back.

 

Daryl, unless I’ve read the article wrongly, it does not say that Doctors aren’t treating people because there is no cure and it’s a waste of time, it only says there are dementia sufferers out there who haven’t been diagnosed. The same could be said for most medical conditions…Heart, Kidney, Liver, Lungs, Intestines and the many cancer sufferers who are unaware until it’s too late.

You say you have a right to a quality of life, so let me ask you, when do you think you reach a stage when you as an individual has no quality of life.

 

I ask this, because tomorrow I have my wife’s Uncles funeral to attend. He was a victim of Alzheimer’s and as his condition deteriorated he was placed into a care home 8 years ago, and for the last 5 years has failed to recognize his own family. He couldn’t feed, wash, clothe himself, and it got to the stage where I was reluctant for her to visit because she came home distressed (what about her quality of life).

He was 86 and finally lost out to a chest infection. My wife thinks that the hospital didn’t do enough to try and save him because of his condition.

I asked what would be the point, as in my opinion, and I repeat, in my opinion, he should be allowed to pass away.

I also said that if I was facing constant care with a failing mind I would raid my “Suicide Drawer” and mix myself an end of days cocktail.

My “Suicide Drawer” is filled with a variety of prescription only painkillers that I’ve been prescribed and used as a guinea pig to try and alleviate my pain… I still think a divorce would be quicker.

However, it is easy to say these things when you’re not really faced with it, but you Daryl, you’re aware what your future holds if no cure is found, so what is your view on… lets call it euthanasia.

 

Daryl, I’ve just read this back and it may sound like I’m attacking you, that’s was never my intention. Like I said I hate these “Guesstimate” survey.

[Daryl]

I don't look at it as an attack at all jim mate - it is your opinion, and that matters as much as mine.

 

I have left a 'living will' if you want to call it that for later on in my condition. My dementia care team, my immediate family and friends and my GP have been made aware of it, and have kept a copy for their records. I am totally against suicide, in any form. As a lot of you may be aware, my mother is in the late stages of Alzheimer's Disease too, and she often doesn't know who I am, who she is, or where she is - I couldn't, wouldn't EVER think that she, myself, or anyone, should let her die in the sense that is to take her out of her suffering.

 

I do agree, as did she, that if a time comes when resuscitation or force feeding (loop peg feeding, the medical name for it when you are in late-stage Alzheimer's Disease and you can no longer maintain bodily functions) needs to be applied - then I have refused it for MYSELF only - but only at a time when I am no longer in control of my own conscious decisions. I wouldn't dream of chucking the towel in now, not after what I have had to go through to get to this stage. 

 

I am in a place of acceptance, contentment, and yes happy, that I can still 'function', albeit limitedly - but I still can... Some of these  people mentioned in the news report aren't even being allowed this right by some of their medical professions in their area - that isn't right, and that certainly isn't fair.

 

I guess here in Notts, especially in my local Ashfield area, we have the most marvellous support team for dementia care. They certainly have seen me through the worst trial in my life, and helped me come to terms with it, both medically and emotionally - this standard should apply to all over the country, not because some medical professionals 'decide' that it isn't worth it! I mention this because there is a further article to the news story on the Alzheimer's Society website - which you can find following the link in my signature at the bottom of my status post.

 

I know it might look like I have jumped at the conclusion that some medical GPs, professions etc don't care, but if you read the full report, it gives the indications that this is the case - and that is just wrong!

[ady]

Firstly, Daryl thanks you for this very interesting thread.

 

Not replied much but I admire you for this diary you are making, it can't be easy to do.

 

Here in Brighton we are very lucky after reading the latest that we have a fantastic alzheimer's part of the heath-care system.

 

Actually only 500 Metres from me is a massive office dedicated to looking after those who fall to it.

 

Went there today (as I do 2-3 times a month) with the post and the staff are all smiles....today I was teaching a new guy and One of the staff opened the door before we knocked but I wanted to show the new postie things 1st....having explained we wern't ready yet she just smiled and said in a caring way "that's ok take your time and learn"..........I thought that was really good to hear, not only from the postie point of view.......but that she really was caring.

[jamesb99_1999]

My grandad was looked after by me and my mom for the last 5+ years where he had sever alzheimers, have to say I think the Medical care for it in this country is Fantastic. There's just very little that can be done - and the pills he was on cost 10k per month to the NHS apparently and even though he was 82 he still got them so not sure it's fair to hae a go at this government and the NHS.

 

all the best/

[Daryl]

My grandad was looked after by me and my mom for the last 5+ years where he had sever alzheimers, have to say I think the Medical care for it in this country is Fantastic. There's just very little that can be done - and the pills he was on cost 10k per month to the NHS apparently and even though he was 82 he still got them so not sure it's fair to hae a go at this government and the NHS.

 

all the best/

Hi James mate

 

I see where you are coming from with this, and this isn't really an attack on the government from me so much as the medical profession in certain areas. 

 

Drugs have been made much more widely available, with generics being released from brand names, that allow very much cheaper production of the chemicals used to make them. I don't really see that the medications are so much costlier at all now... and this isn't an attack on all the dementia care services in general either. As I have said, my dementia care team are second to none, and I don't think I could've managed without their invaluable help - but it isn't nationwide... and that is so unfair to the people who aren't receiving the services that are available in my area.

 

My mother was diagnosed with age 'dementia' (there is no such official diagnosis, so where the doctor got that from I don't know!) 8 years ago in Lincolnshire... she received no medication for it, and was told to try and keep active and a social services package would be set up for her - she received nothing from Lincs NHS at all! A couple of years ago, we had to bring them both back (my stepfather has also been diagnosed with dementia too) to Nottinghamshire. Within a month, my mother was sent to the same dementia team as I am with, diagnosed with the correct dementia (Alzheimer's Disease) and put on medication for it... although too late, because the Aricept treatment she is on (the same drug as me) was given too late...

 

...which proves my point entirely - regions of the NHS are not in unison with this illness, which is fast becoming one of the most prolific illnesses in the 21st century.

[Daryl]

*** UPDATE ***


I have received two letters from my local Council with regards to my benefit. I used to have to pay towards my rent and council tax - I always have...


However, and without even being informed by the DWP about any extra help I could get since I won my appeal on the ESA claim, since I was put on the Support related ESA, the council have sent me new notifications.


I am now entitled to 'full' housing and council tax benefit, and have been since I was put on ESA in July last year.... however, I have been paying my rent and council tax like I always have done. The letter from the council has told me that since I won my appeal to go from Work to Support category on ESA it has made changes to benefit.


The crux of it all is I have paid over £300 more than I should be doing in housing rent and council tax, as since July I didn't need to pay anything... now I have got to try and claim all this back - and the council certainly aren't going to make this easy for me, as they say they cannot refund any credit! Well seeing as though I shouldn't have been paying anything in the first place, I am not leaving it at that.


...Here comes another battle with authority - it annoys me when you have done nothing wrong... they are the first with threatening and demanding letters if you owe them anything. I know this, because I received a summons once in 2003 because I owed them - wait for it - 2p ... that's right, £0.02 and they were taking me to court for it. So I went with a £50 note and demanded they take the payment - lets see how they treat me, now they owe me over £300!


I'll keep you informed of events

[vectra666]

Sorry to hear the news on your disease getting worse quicker than expected and this money you're owed they,re quick enough to want money owed to them like the council tax benefit I owed them because of their mistake, but when they owe you its a different story "ooh you should've told us earlier" "we can,t pay that. Back" as for the government stopping treatment, that's also a disgrace it would be different if it was the PM or royalty. Probably blaming the austerity measures cuts. Back to your illness and also to thunderstorms too I wish you both well and take care

[Daryl]

Sorry to hear the news on your disease getting worse quicker than expected and this money you're owed they,re quick enough to want money owed to them like the council tax benefit I owed them because of their mistake, but when they owe you its a different story "ooh you should've told us earlier" "we can,t pay that. Back" as for the government stopping treatment, that's also a disgrace it would be different if it was the PM or royalty. Probably blaming the austerity measures cuts. Back to your illness and also to thunderstorms too I wish you both well and take care

Thank you vectra... thunderstorm is doing OK, I keep in regular touch with him via email and Facebook and is coping and coming to terms with his condition... the phase he is going through at this early stage does cause this emotional turmoil, but I know he will be OK

[Daryl]

All payments from the Council have been received into my bank account with the rebate from my rent and council tax being paid.

 

I got nearly £300 in back payments which I had overpaid these past few months… It has come in very handy to top up my electric and gas meters, so as when I get paid next,  I will, for a change, have a little money left over to enjoy - just for once!

[1969kappa]

Glad to hear you've had some luck matey in this country for the people who deserve it that is very  rare indeed if you had spent all your life onb the dole smoking weed all day they would look at you as a VIP I know coz got tossers in my family who get quadropile what i get off the dole as I've been unemployed for 12 months BUT worked nearly all my life since leaving school .but these bums get 4x what i get and have never worked in there lives LMFAO but if I I start on that subject I will clog the site up lol. Glad you have had a bit of luck matey keep your head up man you can keep it at bay for a long time yet wishing you all the best 1969kappa

[samson81]

Some good news at last Daryl

 

I know what its like with all these benefits and loopholes god damn wrong some of it, i have worked all my life non stop apart from when my back has gone bad on me but then i only get sick pay from that and the only benefit i can get is housing which sometimes thats hard to get too.

 

Glad to see they realised their mistake and paid back what was owed, housing admitted to me im owed money at the rate of £30.70 per week for the last 18 months but they say the most i can claim back is for the last 6 months only yet they closed my claim 18 months ago saying i was earning too much ??? when you owe them money they send the baliffs after you but when they owe us money then dont even tell us.

 

Anyways Daryl i love following this thread im glad there has been some good for you at last.

 

Sam

[1969kappa]

Some good news at last Daryl

 

I know what its like with all these benefits and loopholes god damn wrong some of it, i have worked all my life non stop apart from when my back has gone bad on me but then i only get sick pay from that and the only benefit i can get is housing which sometimes thats hard to get too.

 

Glad to see they realised their mistake and paid back what was owed, housing admitted to me im owed money at the rate of £30.70 per week for the last 18 months but they say the most i can claim back is for the last 6 months only yet they closed my claim 18 months ago saying i was earning too much ??? when you owe them money they send the baliffs after you but when they owe us money then dont even tell us.

 

Anyways Daryl i love following this thread im glad there has been some good for you at last.

 

Sam

Yeah and the bloody CSA cant track you down and make you pay back pay from year zip.I had £50 taken out of £250 wages in my last job and I'm supposed to survive on that wit a wife and 2 kids f*****g joke this country is THANKS TO THE LAST LABOUR gouvernment

[Daryl]

A nice little poem that has been made - especially for me! 

 

 

My forgetter's getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke
or when I'm 'here' I'm wondering
If I really should be 'there'
And, when I try to think it through,
I haven't got a prayer!

Oft times I walk into a room,
Say 'what am I here for?'
I wrack my brain, but all in vain!
A zero, is my score.

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say 'Hi' and have a chat,
Then, when the person walks away
I ask myself, 'who the hell was that?
Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.

 

Aren’t they nice to me?! lol