Newbie here with early onset Alzheimer's Disease

[creativesarah]

Hi Embers

I am sorry youve had such a hard time recently

if you feel you can do keep posting every now and then, you are very articulate and we dont have to put on a brave face here,

take it easy on yourself

Sarah

 

[Daryl2510]

I'm back... for a while!

Hi all... sorry it's me again!

I came across my bookmarks and remembered this forum.... I can't quite remember what I infringed but was assured in a PM from the team that it wasn't in no way serious and asked to keep posting.

I wasn't going to, but then I have just read the posts made by Embers and felt I had to respond... just to give her a response from someone sat on 'her side of the fence' shall we say.

Embers, your emotions are, and have been a mirror image of how what I have been through ( except I haven't an husband )... it is understandable, and totally natural and part of the process of the illness we have. We are actually 'grieving' for ourselves at what we know we are going lose, miss out on and what we will never achieve. You feel worthless, useless and you totally lose all motivation to want to move forward, yes?

Believe me love, this will pass. You may not yet see any light ahead, but I promise you it will come... What did it for me you ask? ACCEPTANCE - acceptance that you have dementia, acceptance that the future isn't going to be what you or perhaps your family wanted it to be and perhaps the most important of all, acceptance that you are still you, now and in the future. Your family will still love you, your husband will still love you, and your true friends will, no matter what happens... my darling Mam is the living proof of this, and it has provided me with great comfort for my 'journey' ahead.

Please try and come to terms with your condition and what it brings with it... you will find that this is the only 'cure' for your feelings at the moment - and acceptance of this is the biggest part of recovery.

Take care... you have my full support in your journey

With love

Daryl x

 

[Daryl2510]

Financial Assessment from social services

Following on from my past adventures, I am pleased to say that I had a financial assessment carried out by the finance department of the social services on Friday.

I have been told that I can have free daycare, which I nnnow attend once a week for the day, but have to pay for the meals and transport, which isn't a problem at all. A full financial calculation will be made Tuesday in which I will be told how much is contributed towards my respite care when I go into the local residential carehome. It can be a bit of a financial burden when I've had respite, because as well as having to pay for it, I have also got to keep my flat running too, but I manage.

So it is looking good for now... my next battle will probably be when they change my benefit, yet again, from DLA to this new PIP tht has been in the news today - oh the joys!!

Take care all

 

[matts]

Hi daryl

Hi daryl
I also have been diagnosed with early onset and to have had so many problems with most benefit agencys over my ilness and how it affects my everday life in and out of the workplace. what might be easy for others is almost impossible for Me and incredible humilating and demoralising so i know how hard that is on top of the day to day challenges we face daily. Iv recently seeked new employment in a field that suits my ilness so i can live as independently for as long as possible. I read your story and was moved on how selfless your attitude to the ilness is and has given me strength and made me relise that understanding and sharing other peoples experience we all face DIFFRENT obstacles but it how we face those obstacles that matters and is most important is a positive attitude to face the future. Hope to hear from u soon take care

 

[Daryl2510]

Hi daryl
I also have been diagnosed with early onset and to have had so many problems with most benefit agencys over my ilness and how it affects my everday life in and out of the workplace. what might be easy for others is almost impossible for Me and incredible humilating and demoralising so i know how hard that is on top of the day to day challenges we face daily. Iv recently seeked new employment in a field that suits my ilness so i can live as independently for as long as possible. I read your story and was moved on how selfless your attitude to the ilness is and has given me strength and made me relise that understanding and sharing other peoples experience we all face DIFFRENT obstacles but it how we face those obstacles that matters and is most important is a positive attitude to face the future. Hope to hear from u soon take care

My support and encouragement matts...

For someone so very young with our condition you're facing it with great courage and determination - and that is the best thing to do whilst we can.

We may not win the war.... but we can sure as hell win as many battles as we can throughout our journey mate.

Keep the faith - and the fight!

Daryl x

 

[Daryl2510]

My updates within my journey...

A couple of quite significant updates for those that have followed me in my journey and capers...

...I have been officially informed that I have now entered the second stage of Alzheimer's Disease. I have gone from mild to moderate form of the illness, which is, I am told the normal stage process after a coupe of years from diagnosis - bearing in mind I had the symptoms a good year or so before I was given the official verdict in June 2011. So that is a milestone passed in this journey of mine, and I can still keep you informed - so lets cling to that at least.

The second bit of information is that my nephew is going to live with his girlfriend in the coming weeks (and I should think so after 7 years of being in a relationship with her - let her put up with him full time now... it'll either make or break 'em!!).

Because of this, I have been told that I shall no longer be able to live where I am in my present home, where I have lived for 20 years, and where my Dad literally died at the side of me... I am not that upset about having to go to be honest because I realise, after what I have mentioned in the first paragraph, that things aren't certainly going to get any better. My Social Worker has applied to my council for an updated application form for moving, and I have received it today. She is going to come to the flat and fill the form in for me. Also the spare bedroom tax will kick in when my nephew leaves here and I so will begrudge having to pay that... so they can rehouse me, and my flat will suit a couple with a child or adult with them. My Social Worker, along with my care coordinator are going to get the council to seek me a smaller place in some sheltered or secured accommodation, where I can live on my own whilst I still can, but be in a place for when the time comes when I cannot... there are a few council properties lie that, but they may have to go into the private rented groups for more of those places.

So there you have it... a big change all round - but I'm still me, and what's more... I'm still here!

 

[Daryl2510]

...yet another update

My nephew officially moves out tomorrow and I have been to Council to remove from living with me.

My social worker has been today and filled in my housing exchange application for smaller and more secure and sheltered accommodation because my flat now us officially too big... it was even when my nephew lived here.

The Housing Manager at Ashfield Homes has made an appointment to see me and my social worker one day next week, day tbc, about my needs and future security.

So it looks like now within a matter of a few weeks I shall be living somewhere new, which I am glad of to be honest now, because all this has become a little too much to handle... but my social worker is a dynamo and I am very grateful of all that she has done for me.

Take care

 

[Daryl2510]

it's all go...

I have had to have emergency respite for two weeks in the carehome that I cannot mention here. I have been doing well, but then my nephew has gone to live with his long-time girlfriend, and I suddenly find myself looking after a two-bedroomed quite large ground floor flat.

To top all that off, not only am I now short my nephew's board payments fortnightly, the local council immediately started charging me £10 per week for the new coalition government's 'bedroom tax'!

My social worker and the housing manager of my council landlords have been a boon though. After writing a fairly extensive report, and with a lot of support from the housing manager, the local council has wavered a dispensation in my favour to be allowed to 'bid' on tenancies that provide single bedroomed accomodation within their elderly complexes, because of my future needs, as well as the present ones.

So hopefully, although sadly, I should soon be moving into much smaller accommodation that will be beneficial to me now and my future needs. I have currently lived at my present address since 1997 when I moved in with my late father, and after he died on New Year's Eve 2001, I succeeded the tenancy.

I leave respite tomorrow (Friday) after spending two weeks in the carehome, and I must go back and start preparing the inevitable, but welcome 'flit'!

 

[nicoise]

Good luck with the move when it comes Daryl - I do hope you will settle there quickly, and that the change isn't too disruptive.

I am so pleased that for once there is a positive posting re SS - your SW sounds good, what a pleasant change from all the negatives people often seem to encounter.

Also that you find the respite care obviously helps when you need it most, hopefully your batteries will be recharged for packing up!

Please keep us updated on how things are going?

 

[Daryl2510]

my first bid…

I’ve got a bid on my first property for transfer with the local council.

It is for a one-bedroomed bungalow, for the over 60s (but I have a dispensation to be allowed to bid on such properties) with walk-in level shower, gas CH etc.

I will let you know how I get on - fingers crossed, I am top bidder up to yet, as I have just been put into Band 2 (out of 5) for my medical needs.


Band 1 is ‘Emergency’ and band 2 is Priority… things are looking good.

 

[Daryl2510]

Got a new bungalow!

I have won the bidding for a bungalow within an elderly complex in the town next to me.

My nephew lives just a five-minute walk from me, and there is a local store, and more importantly, a fish and chip shop, within 100yds!

The local council have telephoned me to confirm that I have won the tenancy, and must transfer from my present accommodation within the next 28 days.

At least that will put an end to this bedroom tax that I have had to pay since my nephew left me - the sooner I move the better I think

 

[Dazmum]

That's excellent news Daryl, all the very best in your new home, please let us know how you get on x

 

[Izzy]

Great news!

 

[Daryl2510]

I've had to go to GP today and he has told me I have got pneumonia with a touch of pleurisy... I gave got to go back in 7 days to see if the fluid has cleared off my lungs after a course of antibiotics.

I'm flitting within the next three weeks... so that is all I need at the moment.

I'll let you know how I get on - I've got to rest up for a few days so I'll report back then

 

[Dazmum]

Oh you poor soul, that sounds nasty, take it easy and I hope you feel better very soon. I know you are getting ready to move, but try not to do too much. Take care xxx

 

[ashleypollock]

I'm so sorry just my greatgrandfather had Alzheimer's and earned his angel wings on August tenth 2013 and it is a hard disease but stay strong


Sent from my iPhone using Talking Point mobile app
Ashley

 

[FifiMo]

Hiya Daryl,

Congratulations on getting the new house! Sorry about you being sick though. I know the temptation will be to soldier on and get ready for the flitting, but please rest at least until the antibiotics start working.

I do hope you are feeling better soon,

Fiona

 

[creativesarah]

sorry you are poorly when i get an infection i a bit more forgetful and random than usual
great news about your new home Sarah


Sent from my GT-S5570 using Talking Point mobile app

 

[Daryl2510]

Update

I have just recovered about from a bout of pneumonia and pleurisy, which has really knocked me off of my feet. I have had to rest up, and most of my posts here have been made from what felt like my ‘death bed’! lol

I went onto the council bidding site yesterday to check up on any progress with my bungalow but the keys are still in the maintenance department… however, I did pop into the bidding section to see the latest properties up for grabs - and guess what?

My flat that I am currently living in now is only up for people to bid on this week! It really felt weird seeing this place up for tenancy, especially as I have lived here over 17 years, and my late darling Dad moved in here in 1987 - its almost like a ‘loss’ even though I have initialised it all.

Still, it has got to be done, and I’ve got to think of the future, so I’m sure that my Dad would’ve wanted that for me - well, I know I do at any rate!

 

[Daryl2510]

Couple of updates

After having a few blood tests yesterday, my GP telephoned me this morning to confirm that I have now been diagnosed with 'type 2' diabetes… he has left a dietary sheet with the reception, and I have got to make another appointment within 12 weeks, for further blood tests, as they are hoping that they will be able to manage it under dietary control (so I don't drink, and haven't for nearly 3 years, I don't smoke anymore, and now I have got to stop eating all my favourite food, my 'comfort' food, because it is the 'avoid this food' section - typical!)

…some good news however. I have received another telephone call from my local council to tell me that I can pick the keys up for my new bungalow this afternoon and go and view it inside - after 5 weeks since I won it! They have got to be handed in by 3.30pm this afternoon though and then I have 24 hours to decide whether I want it or not (too late me ducks, my carpets are gone from my flat, everything is packed away in boxes and bin-liners and I have ordered a skip).

An eventful day for me today… but tempered with a very emotionally sad week for me with a fellow sufferer's passing though… he nursed his father through the illness to the end, and he was diagnosed 9 months ago with dementia.

He had been missing for a few days, and on Tuesday his body was found in the local shipping canal near to wear he lived… he had told me that he wasn't going to let the illness take any decision from him before it was too late - at least he is free and at peace with himself now - bless him