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Hi, am I in the right place?

Spamar

Registered User
Oct 5, 2013
7,069
Suffolk
You really need AA, you will then be able to get council tax reduction. You are not defrauding if mum is in need and always use worst case scenario. A few years ago the Alzheimer's society helped with forms, nowadays in our area it's AgeUK. They are brilliant, they also know the buzz words that help. It doesn't cost anything. Blue badge, if applicable, as well as someone mentioned.
You might feel that you don't need help, but dementia is a long drawn out disease which gets worse. Get yourself and mother known now, so help will be available when you need it.
It matters not that you find it difficult to accept help, it's what your mother needs. She's the important one. Look after her?
I wish you success.
 

Flake

Registered User
Mar 9, 2015
222
Hi Tim, I complete AA, DLA renewals and PIP forms amongst other things in my job role. Please re-apply and go through each question by stating that she needs support the 'majority of the time' to do these things. Night-time care is for care during the night. They actually mean through the night, not just a 10pm visit and then close down for the night. State in the form that she is unable, due to her lack of mental capacity to complete everyday tasks and that she needs constant supervision. Do not use words like 'sometimes', 'occasionally' 'on and off' etc. Once AA is granted you should be able to apply for Carers Allowance as long as you are not in full time employment. Speak to your local Council about Council Tax Relief, If your Mum lacks mental capacity they will send out a form and will write to her GP for 'evidence'. This award should be given and an exemption from Council Tax granted.

Dementia is a truly horrible disease and tests us all. Read through some of the posts on this site and you will see varying coping mechanisms that we all use. Wishing you well and sending you some love :) xx
 

lexy

Registered User
Nov 24, 2013
563
Hello Tim

reading your post reminded me so much of how I felt when my mum had the onset of dementia (mum not here anymore) and I did feel for you. The situation you are in can be very frustrating and I did not know at the time that my dear mum's odd behaviour was dementia, but, sadly, it was. Your mum would need to be in receipt of Attendance Allowance in order for you to claim Carers Allowance, there are other benefits she could be claiming that would also enable you to claim CA but I can't remember them without checking. I seem to remember my mum's GP helped her with the forms for AA but the CAB are brilliant where I live and could also help you with this. They are better at filling in these forms than we are, they know how to word them and they know the law.

You may have been turned down for Carer's Allowance because you are earning too much, it used to be £102 a week, but this may have increased in April, I'm not sure. The only thing I would say is try not to tell her to "snap out of it" because she probably can't. I really do not know which stage of this illness is the worst, the beginning, the middle or the end, all I do know is they are all pretty horrible and can only advise you to get all the help you can in this situation, I am very independent and thought I could do everything on my own, but this illness is too powerful so don't take it on alone, get help, does your mum have a social worker? I contacted the Adult Social Care department of my Local Authority and asked for help and had carer's coming in to help wash my mum in the mornings. You can have her medication delivered in a dosset box, GP and chemist usually arrange this if requested.

Wishing you well and thinking of you

Lexy
 
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TimT

Registered User
May 11, 2015
10
Thank-you for all your kind words. Sorry I was late replying. I promise I will re-apply for AA. I'll let you know how it goes.

Thanks again.
 

JayGun

Registered User
Jun 24, 2013
291
I understand why people are telling me to recall the worst day, not the best. I've been told that before, by Social Services themselves. My problem is I think her worst day - or my worst day - is still not bad enough to justify AA. Or maybe I'm just too damn honest.

I always remember someone from the DWP coming to assess her. She kept emphasising that Mum wasn't very tidy and looked a bit dirty, which wasn't true. I - stupidly - got the wrong idea and got a bit defensive. Eventually the lady left, and it was only later on in hindsight did I realise what she was doing. She was trying to get me to say things in order to increase my chances of getting AA; she was trying to get me to exaggerate Mum's condition. This woman was from the DWP was actually trying to get me to defraud the DWP!

I am so bloody confused.
It's not that she wanted you to lie, or defraud anybody it's just that the time consuming emotional exhaustion part of being totally responsible for another human being with dementia doesn't really fit into the form. It's all about the absolute basics -I think they call them ADLs - activities of daily living - can they feed themselves, wash and dress themselves etc. but pill paying and life admin like calling plumbers definitely counts.

Imagine you and your Aunt are gone for a fortnight. How would your mum get on? Thinking like that may help you realise that you both attend to her needs constantly, and you'll be able to fill in the form more honestly. ;)
 
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Blondebomber

Registered User
Feb 28, 2015
16
I don't even know if I'm in the right place. My name is Tim. My mother is 80 and she was diagnosed with dementia/Alzheimer's maybe 5 years ago . (I was told dementia is a form of Alzheimer's, and that Alzheimer's is a form of dementia, and I am still none the bloody wiser!). After that she was placed under the care of the local Memory Clinic where she was prescribed donazepil. She was there for two years before they decided that because she was showing no signs of deterioration she could be discharged. Which to my mind calls into question her entire diagnosis in the first place; just how bad do you have to get? I feel like we were abandoned just because she didn't meet a minimum level of criteria for help.

However, even now she still recognises me and her sister; she can still communicate and hold conversation, though her comprehension and retention of information is bad. She isn't incontinent, she knows how to use a knife and fork, etc. She even does the washing up! But then I suppose this horrible disease affects us all differently; I know a neighbour who has the same condition and is in a far worst state. But sometimes I wonder if this is just ageing, or whether she does actually have this disease. Isn't she a bit old to be be diagnosed with this? I always hear of early-onset dementia, but rarely dementia diagnosed this late in life. Recently however me and her sister have noticed she is talking to herself more; it's not abusive or gibberish, she's having what seems like full conversations with people from her past, recounting memories. She does it in the loo, in bed, even while watching TV. I asked her what she was doing, and she just said, matter of factly, "oh don't mind me I'm just talking to myself".

Is this normal? What the heck does normal mean, anyway, in a illness like this? Just how am I suppose to react? What am I suppose to do? Should I just let her live in her own little world, or snap her out of it? We're from completely different generations and it's hard to find common ground for things to talk about; and if we do find something to talk about she doesn't comprehend all that well, and quickly loses interest. I am neither a psychiatrist or a counsellor; I feel like I'm not equipped to handle this. Each day I feel less and less like a son and more like a glorified baby-sitter. I think I'm coping, but I'm not; the only respite I get is she goes to a day centre twice a week. But I'm starting to wonder if an extra day might help.

Tonight I snapped at her, and I broke down in tears, which is unusual for me as I tend to keep everything bottled up. Physically she can walk and is fairly mobile; it's her memory that is the main issue. One minute she praises me for all I do for her, the next she's muttering under her breath that I'm an "idle ******" who does nothing. Believe me, I do pretty much everything that needs doing, including her dinner as well as my own! Her mood swings are really hard to take sometimes. She won't even admit most of the time that she even has a memory problem, and that drives me nuts. I can see it every damn day; I have to watch her, I have to make sure she takes her tablets; I'm the one who makes and keeps doctor/hospital appointments for her. I am essentially now the man of the house; I have to do everything for her. I have applied twice for Carers Allowance/Attendance Allowance and on both times I was turned down! That's what you get for being honest!

I'm an only child, with few friends or family, so it's left up to me and her 82 yr old sister (who doesn't have any dementia and is surprisingly fit and healthy for her age!) to deal with her the best we can. My dad died two years ago (Mum's husband) after a long illness and even before then I was more or less looking after them both. After he died (I had to arrange the funeral, one of the hardest things I've ever had to do in my life) I organised a widows pension for her, just to help her out financially. And if we need a plumber, I get a plumber; if we need an electrician, I get an electrician; if the heating breaks down in the winter which it did during a cold snap, I get an engineer. There is no way in hell she would be able to do any of these things by herself. I also had to take control of her pension, and bank accounts, because she would have struggled otherwise; she barely knows how much she has in her accounts, let alone how to deal with direct debits, standing orders, etc. If I weren't here for her, I know she would struggle really badly. But at the same time I feel trapped, and utterly bereft.

I'm sorry I'm rambling. My only comfort in those dark and lonely hours is knowing I am not alone in this.

Thankyou,
Tim
Tim, you are absolutely not alone in all this. I understand every word. I am the only child and both of my parents have dementia. My life is entirely on hold, whilst we, my husband and I try and cope with all the chaos. We have not lived in our marital home now for 8 months and our family life is shot to pieces. We are OAPs looking after even older OAPs...my husband is 77 and he is In the role of a Carer...and he often gets the 'thin end of the wedge' when my Mother decides to treat him with disdain. There are days when we feel that we are just shadows living only for all their needs. Our day!! Only starts after they go to bed..and even that can be difficult if my Father doesn't want to go to bed or decides that instead of sleeping he will wander around. We are not heroes but we are human and just do our best to navigate through difficult if not impossible situations, Re-apply for the AA and think of the worst day and write absolutely everything down even if it seems like a novel...
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Fred Flintstone

Registered User
Aug 28, 2014
133
S. E. England
[...]
My problem is I think her worst day - or my worst day - is still not bad enough to justify AA. Or maybe I'm just too damn honest.
Perhaps just a little over-scrupulous, Tim.


I always remember someone from the DWP coming to assess her. She kept emphasising that Mum wasn't very tidy and looked a bit dirty, which wasn't true. I - stupidly - got the wrong idea and got a bit defensive. Eventually the lady left, and it was only later on in hindsight did I realise what she was doing. She was trying to get me to say things in order to increase my chances of getting AA; she was trying to get me to exaggerate Mum's condition. This woman was from the DWP was actually trying to get me to defraud the DWP!

I am so bloody confused.
I'm sure fraud was nowhere near her mind.

I believe some of the people she deals with are near-professional benefit claimants - there are a lot of them about. It will have been apparent to her that you and your mother are quite the opposite, and I suspect she was merely trying to guide some of the DWP's money to an appropriate beneficiary.

Fred
 

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