My Alzheimer's Thread...

[Daryl]

Hi all,

Following on from the old thread I had over at Fruit Emu, I have asked and kindly and happily been told to carry my journey through dementia here on DAD's FME...
...As I am back here this now seems the logical step to make - and clears the clutter from Fruit Emu and also a breather for a few members whose feathers I seem to have ruffled by signing up here.

For you all to get the gist of my journey with Alzheimer's Disease, I will link you to the very fist page of the thread I made on the day I went to the Queen's Medical Centre, Nottingham and got the diagnosis... and how I 'came out' to you all with my condition.

There's a lot to get through if you're new to reading it, but hose who have followed me on the journey, my friends within the FME community especially, will now just be able to keep up-to-date here.

Thanks guys - enjoy the ride with me!
Daryl x


The link is here: -->  My first post in the thread 'My Alzheimer's News'

( edited by Daryl: missing the paragraphs again )

[Geddy]

Will be good to view the continued story..... just remember where you post

[Daryl]

My 'Andy Warhol' 15 minutes of fame...

...I've made the Alzheimer's Society 'Living With Dementia' magazine with my support worker describing life as both a carer and sufferer of the condition.

The photos don't do me any justice at all... but I hope my story can give encouragement to those who are diagnosed or care for people with dementia.

Anyhow, here's the link below:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2875

Enjoy - and thanks to everyone who continues to give me support here,

Daryl x

[DAD]

Thanks for sharing that Daryl

[Daryl]

Here are some photos of my article from the Living With Dementia magazine that I have had delivered today...

...I've even made 'Page 3'  

[DAD]

Fame at last

[Daryl]

I've had my Mam and stepdad visit today, with the help of my support worker...

...they were very pleased with the article in the 'Living With Dementia' magazine about them both too - so my support worker got us all to pose for a photo of the occasion!

I naturally enjoyed the publicity!

[Daryl]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Very sad news today that the inspiration this man gave me to fight the battle with good humour and a strong determination to get through things has passed away...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...be at peace Sir Terry Pratchett x[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]http://m.bbc.co.uk/news/entertainment-arts-31858156[/font]

[barcrest junky]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Very sad news today that the inspiration this man gave me to fight the battle with good humour and a strong determination to get through things has passed away...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...be at peace Sir Terry Pratchett x[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]http://m.bbc.co.uk/news/entertainment-arts-31858156[/font]

Yes, RIP Sir Terry. I am currently working my way through Discworld series. Excellent books.

bj

[Daryl]

I have received a letter today from my local council housing association...

...it makes a good read!

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]"RENT ARREARS: £0.00[/font]

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]Dear Mr Lees,[/font]

[font=Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif]I am writing to advise you that your rent account is in arrears.

£67.43 Rent
£67.43 Housing Benefit (Secured) deduction
£ 0.00 Arrears

The payment of £0.00 is due immediately.

Your right to live in your home could be put in jeopardy if regular rent payments are not made on time.


How the hell can I pay NOTHING?

Now I know I'm losing it a little bit - but good gawd, even I'm not that thick to waste council money...

...I wonder how many other people have received them... and vulnerable people panicking in case they think they are going to be thrown out their homes!

The mind boggles!!  [/font]

[Geddy]

Write them a cheque for £0.00 and charge them £15 for the letter..... turds...

[Daryl]

[font='Helvetica Neue', Arial, Verdana, sans-serif]Just an update to all my friends here who may be wondering where I have gone on Facebook...[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]...well just that - I have deactivated my account after nearly 8 years and I am on Twitter (which I have had equally as long) with my Twitter username as @daryl2510[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]I had a very 'untrustworthy' friend on there and after that, because I couldn't find out who it was who had done what they did - decided to go and to be honest, I feel much freer of it all! [/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]Peace and love guys[/font]


[font='Helvetica Neue', Arial, Verdana, sans-serif]Daryl x[/font]

[Geddy]

Block the arse hole who did it and get back on FB!!!

[Daryl]

Block the arse hole who did it and get back on FB!!!

...I have and I am!

[Daryl]

An update
 
It is 4 years ago on Tuesday that I was diagnosed with early onset Alzheimer's Disease...
 
Not a big thing now, as I'm used to it – but it came like a bolt of lightning from the gods when I was given the diagnosis at the Queen's Medical Centre in Nottingham.
As a carer for my Mam and stepdad who are both now in the latter stages of the illness, the enormity of realising my fate, coupled with the fact that I was still helping to care for them, left me in a very dark place indeed.
 
However, after the help from the social services and teo lovely social workers – coupled with the help I now receive from my support worker for 6 hours per week... and my Mam and stepdad both now safely in full-time care at their nursing home, I am in as good a place as anyone can be with our condition... and I also know that when the time comes that I myself am unable to make decisions for myself, my support worker and framework structure will make sure that steps are taken to protect my interests and well-being.
 
I am now officially entering 'moderate stage dementia' whatever that is supposed to mean – I can still do things for myself, to an extent physically because of the secondary condition caused by my dementia, Parkinson's Disease... I can still communicate, type (although my writing has gone downhill fast, both in legibility and spelling – on computers you can use a spellchecker), access the internet and use my computers and devices and also go out with my support worker – but the day-to-day things that people take so often for granted have all but gone for me.
 
Remembering peoples' names, stuttering when talking, trying to say the right words, but getting them twisted as I'm trying to communicate them – remembering to take my medications without alarms going off on all my computers, devices and phones – are all commonplace – you get used to it – and the stark fact of the matter is that you have too – because there is nothing you or the medical world can currently do to stop the onslaught of gradually losing everything that makes you... you!
 
I'm in a good place though, both physically (to an extent) and mentally (to an extreme)  – and I know that my future is secure with the help that I have – so I can go into 'oblivion' when the time comes and not really worry or care about it anymore!
 
We lost a good friend here with the same condition, and despite our efforts to help him through, he took a different route from me... I hope Neil (thunderstorm) found the peace he was looking for - be at peace buddy. x
 
I too could've easily have taken the route he did... But I didn't because I didn't want too - AND the fact that so many of you here have been so supportive to me since I 'came out' in this thread all those years ago now and told you the day I was diagnosed with the condition. Your love, best wishes and cheering me on is one of the main reasons that I can still function now... That and lovely visits by a few FME members to see me personally to make sure I'm alright as been the reason for me to soldier on ( and to pester those of you who don't necessarily 'share' my point of view on occasions )
 
As a Moderator at Fruit Emu I had a lovely three years... I don't regret one minute of it either. The support from the vast majority of the members was incentive enough, but as time progressed, along with my condition, I knew it was time to 'get off the boat' so I left completely.
 
So there you have it, after a long ramble that no doubt even you have forgotten reading, like I've forgotten what I have put!
 
Keep up your support, your love and best wishes to me and keep supporting the dementia services... It is an illness that is becoming far too common, and not just for the elderly either!
 
Peace and love, as always guys
 
Daryl xx