New here...

[LauraNadine]

Hi everyone,
Hopefully this is the right place to be putting this? I'm new here, and I guess I wanted to introduce myself.
My name's Laura, I'm 24, and in August my Dad (aged 59) was diagnosed with Alzheimer's.
I've been really struggling with the diagnosis to be honest, I just feel like there's now this dark cloud hanging over our family. I find it really hard to talk to people about it because I just get upset and I hate getting upset in front of people (silly, I know, but I just don't like it) and also I just really feel like nobody gets it. People keep telling me how awful it is, and how sorry they are, and how either their friends grandparent or their own grandparent had it and I just want to scream at them NO that is not the same as what I'm feeling! My emotions are constantly all over the place, I get upset/angry whenever I stop and really think about the whole situation.
I'm also getting frustrated with the "system" - my Dad was made redundant 3 years ago (partly due to his health, which we now suspect was the very early signs of his Alzheimer's) and as he was only 56, he couldn't get his state pension - luckily he was prepared and had set up a private pension as well, which he is now living off of as well as his savings. He can't get his pension until he's 65, even though he's technically retired. He's not entitled to most of the benefits out there because he has capital over a certain amount... How is that fair?! That someone who worked all their life, built up some decent savings to provide for their family in the future, then gets penalised because they were trying to be prepared, and to look after their family, and at the time when they need support the most, are turned away? It's ludicrous...
Anyway, sorry, that was a bit of a rant in the end. So hi, hello, my name's Laura, I'm stumbling through this whole thing right now so any advice or kind words or just anything really would be much appreciated and I promise I'm not as crazy as this post has possibly made me sound

 

[angelface]

Welcome Laura, sorry you have to come and join us here (if you see what I mean).

Have you contacted your local Alzheimers Society? They may well be able to help.

Dementia of any sort is a horrible disease, so please keep posting in case we are able to help you.

Gx

 

[jaymor]

Hi Laura,

Welcome to the forum. It really is difficult to get your head around what is in front of you and very frightening. We have all felt the same and know it is not easy. Just take it a day at a time, nothing will change overnight.

Use the forum to help you, someone will be able to answer your questions or give advice. We will listen to your rants and no one will judge you for your feelings.

Take care,

Jay


Sent from my iPad using Talking Point mobile app

 

[Jools67]

Personal Independence Payment - formerly DLA

Hi Laura

I think you need to check out the gov site - I think your father may be entitled to Personal Independence Payment, formerly Disability Living allowance. It's not means tested but is dependent on how much care an individual needs. Just click on the government website or google Personal Independence Payment.

I'm sorry to hear that your father has been diagnosed with Alzheimers. My father is now 76 and was diagnosed when he was 67 before moving to Spain to live. He was recently deported back to the UK as he was violent towards his wife and he is currently in hospital waiting to be placed in either a residential or nursing home. It is a terrible illness but the change in your father will be gradual and you will hopefully feel able to come to terms with each new stage as it arises. I've spent very little time with my father over the past 7 years but now he is in England, I visit him at least once a week but he no longer knows who I am. The change in him over 2 years was dramatic but the only comfort is that he is actually quite content in his own world and he is being well looked after for the first time in years (his estranged wife left him to look after himself!). I have felt like I'm wading through treacle trying to get his pensions sorted so have let social services take over. If possible, someone needs to get power of attorney in place before your father is no longer considered to have the capacity to make decisions. You may benefit from talking to citizens advice bureau for further information.

I think your feelings are very normal and its understandable that you are experiencing a range of emotions. Even though my father was diagnosed a few years ago it is only now that I realise what this illness really means - him being out of the country meant I didn't have to deal with it. Now I do! I try and take one day at a time. Seeing my dad was wearing pads on Sunday felt like another downwards step but rather that than him sitting in wet pants. And he still smiles - its me who is holding back the tears when I see him. I don't think there will be a person on this site who doesn't understand how you feel right now so you're not alone but do need to find someone to talk to. You don't mention your mother or siblings - can you talk to her/them?

Julie

 

[16Kate]

Hey I'm 16 and my dad was diagnosed with Alzheimer's a year ago at 51 years old, he had to quit his job which was hard on all of us, and I can't get a job to suit my hours so I looked at ema(money for young people in education, it's around £30 a week) however, as he cannot claim pension and quit from self employment i am not entitled to this extra help which is annoying, I have to use my own money for transport, books, food and it would help a lot! The government need to look at situations not our yearly income!!

 

[FifiMo]

Kate/Laura

Check whether your dads have applied for refund/reduction of their council tax. If not, get a form from the council and help him apply on the basis that he has a mental health disease. Every small amount helps.

Fiona

 

[phil Maffs]

Hi laura
Big pat on the back for posting.
As for nobody get it's, yes i understand that one "Elizebeth Barlete" (ex- AS manager) once said to me
"Once youve met one person with dementia youve met only one person with dementia"
Meaning every signle case of dementia is uniquely different.
I am hoping your in contact with your local AS (Alzheimer's society) branch, there support and direction is invaluable during this time.
My wifes 52 with EOD (Early onset Dementia) AD (Alzheimer's disease), and like your dad is entitiled to nothing, nil zip, apart from PIP (personal independant payment) and council tax reduction for The household.
5 months now since diagnoses and my wife still believes she can function normally.

Easy to say be strong when it rips at you everyday,

 

[benny]

Hi Laura

Your words will sound so familiar to most here on TP and we definitely know what you're saying when They Don't Get It! I found that most of those people would be just visitors to their loved ones not actually full on Carers, and Boy what a difference that makes that is why they can't see what all the fuss is about or why we pull away, and distance ourselves from our normal lives. TP definitely got me through, and I still hav a long way to go yet so stay strong and in touch!