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Wife is just 54

Jon29

Registered User
Sep 2, 2015
20
My wife is just 54, nearly 55 and we noticed the initial signs of a problem about 4 years ago. Last week, after a CT scan in London she was formally diagnosed with Alzheimer's.

I work from home so we've been coping well, of course the biggest concern is how long until... then I ask myself until what! Until she gets lost somewhere she knows - already happened! But what else, what's next, what will happen and what might happen?

As I see it, no-one knows. Will she get worse, sure, but next year, 10 years, less/more. Will I have to give up work, can we keep the dogs, will she not be able to be left alone, what about personal care - I'm a roughty toughty bloke - can I.... sure I can... I hope!

More questions than I guess there are answers. Next stop is benefits I'm told - neither of us have claimed a penny in our life, but I'm told I should. Medication - she's going to get some Donepezil which I'm told will help her concentration.

I will be seeking local help, someone to chat to I guess, never needed that before either.

Thought I'd join this forum to see if I get any advice.

Well HI anyway, I expect I'll be here a lot over the next few weeks, months and years.
 

canary

Registered User
Feb 25, 2014
11,676
South coast
Hello and welcome to Talking Point Jon. :)

Diagnosis is always a scary time when the reality starts to hit you. When the doctors suggested that my OH had fronto temperal dementia I was really scared as I already have a mum with Alzheimers. Luckily I was already a member here and I will pass on the advice: Dont be scared - nothing has actually changed and you are dealing with it at the moment - you just have a label now. Dont try and look too far into the future, everyones dementia journey is different and lots of things may never happen. Just deal with the problems as they arrive and accept all offers of help with both hands.


Actually, now would be a good time to get paperwork done. Sort out wills and POA if you havent done so already. Swallow your pride and find out what benefits you are both eligible for. Your wife should be eligible for ESA and PIP at least (Im assuming that she is not working here). What else she is eligible for depends on your circumstances - CAB is helpful is helpful when guiding you through this maze.

Throughout the journey you will get good days and bad days. Enjoy the good ones and dont feel guilty about the bad ones. Keep reading and post about any problems
xx
 

Beate

Registered User
May 21, 2014
11,905
London
Hi Jon and welcome to TP.

You've done the right thing coming here. The first thing to say is that everyone's dementia journey is different so go with the flow and tackle each issue as it arises.
Your wife could go downhill next week or in two years. She might develop certain issues like incontinence or hallucinations or she might not. She might be cooperative in her care or say no to everything. She might be unaware and happy or aware and depressed.

You've been given pretty good advice already - get all benefits and allowances sorted, get power of attorney (extremely important) plus a will.

See what the charities have to offer in practical and emotional support and try their coffee mornings if you can. Get help from Social Services when you are struggling.

Life doesn't end here but it might be a rocky journey so keep posting!
 

Brannybob

Registered User
Jun 20, 2013
24
UK
Hi Jon29

Hello
My hubby was diagnosed 3 years ago aged 53, we take each day and hurdle as they come. Still enjoy the garden and holidays, didn't want to claim benefits but they help to make life a little easier. We enjoy the moment I know things are going to get tougher. We use services on offer, not all the time but just so they know hubby before we get to a crisis point. Glad you have found the forum lots of people on here with good advice
 

1mindy

Registered User
Jul 21, 2015
539
Shropshire
Really you are jumping ahead but it is understandable .If things are working for you as they are just carry on. The advice you have been given already is good advice. There is Attendance Allowance which is not means tested. If you have never claimed anything before when filling in the forms always put the worst scenario as working helping people through the mine field I know there is a tendency to fill forms in with the best scenario ,or its not too bad or I don't want to lie. But it really is the worst scenario that you need the help for this is not to lie its just as it is. Once you have AAYou can get council tax relief although I have seen on other comments that some places give it on diagnosis. Good luck and yes this is a good place for support .
 

Tin

Registered User
May 18, 2014
4,825
UK
Hello and welcome. Catch your breath, start that paperwork and get any and all b!!!!! benefits you are entitled to. talk to CAB and AgeUk, they will guide you through it all. Keep the dogs, a good walk never hurt anyone and is such a stress reliever and keep posting about anything and everything. If the experience and knowledge on this website could be bottled!!!!!
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
I can identify with what you say, wife diagnosed at 55 and I work from home toonfor the past year, sadly I was the soft target so I've been made redundant "quelle suprise" as Del Boy would say.
How long? Who knows?
her diagnosis means you can get some Personal Independence Payment (link below) and you can get carers allowance (if you earn under £103 a week I think).
Stick around and ask what you like we're all heading down the same road, one way or another.
K
https://www.gov.uk/pip/overview
 

hariyaksh

Registered User
Aug 26, 2015
26
My wife is just 54, nearly 55 and we noticed the initial signs of a problem about 4 years ago. Last week, after a CT scan in London she was formally diagnosed with Alzheimer's.

I work from home so we've been coping well, of course the biggest concern is how long until... then I ask myself until what! Until she gets lost somewhere she knows - already happened! But what else, what's next, what will happen and what might happen?

As I see it, no-one knows. Will she get worse, sure, but next year, 10 years, less/more. Will I have to give up work, can we keep the dogs, will she not be able to be left alone, what about personal care - I'm a roughty toughty bloke - can I.... sure I can... I hope!

More questions than I guess there are answers. Next stop is benefits I'm told - neither of us have claimed a penny in our life, but I'm told I should. Medication - she's going to get some Donepezil which I'm told will help her concentration.

I will be seeking local help, someone to chat to I guess, never needed that before either.

Thought I'd join this forum to see if I get any advice.

Well HI anyway, I expect I'll be here a lot over the next few weeks, months and years.

Hello and welcome to Talking Point. I'm sorry to hear about your wife. All I can say is that this is the time she needs you the most. It is essential to handle her with patience and care.
I can say this since I have a Grandmother of age 71 who suffers from Dementia. Her behaviour pattern changed drastically over a short period of time. It took great efforts to tackle her situation and get habituated with her behavioural changes. But in end i got adjusted and so will you.
I came here to know more and connect to people who face similar situations like I do and it certainly helped me, just like it will help you too.
Good luck to you and your partner.
 

Jon29

Registered User
Sep 2, 2015
20
Thank you

I can see why people come to this forum, and I really appreciate you all taking the time to respond.

Yes, benefits and pills next. Then... nothing, one day at a time, I think the underlying message is everyone is different.

Thank you again, I'll be back for sure :)
 

Boldredrosie

Registered User
Mar 13, 2012
244
and the thing that quite often gets overlooked is that you are eligible for a 25% council tax reduction on the grounds of severe mental impairment...
Not in Redbridge you're not. I've applied for my mum twice and been turned down twice.
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
Not in Redbridge you're not. I've applied for my mum twice and been turned down twice.
I don't want to go off topic but on their website it says you are entitled:
People who are severely mentally impaired
People who are severely mentally impaired are not counted. For Council Tax purposes, a person is regarded as severely mentally impaired if he or she suffers, for whatever reason, from severe impairment of intelligence and social functioning, which appears to be permanent. In order not to be counted, a person will need a certificate from his or her doctor to say that he or she is severely mentally impaired.

Link to the website below, as far as I'm aware legally they have to give the discount.
I (and other on here) got it backdated to the date of diagnosis.
K
http://www2.redbridge.gov.uk/cms/council_tax_and_housing/council_tax/council_tax_billing_faqs/discounts_for_council_tax_bill.aspx#SMI
 

Optomistic

Registered User
Jul 24, 2014
123
Manchester
Ho Jon,

My husband has early Alzheimers and he is excempt from council tax i get a 25% reduction the bills is now in my name. I had to fill a form in and send it to the consultant at the hospital where he was diagnosed she signed it. You wife should apply for PIPs the new name for DLA and should get some benefit.

My husband was diagnosed last year and was put on Donzepezil they are very good and seem to slow things down. He can cope better on them with things like money and jobs around the house. I am his fulltime carer and he doesnt go anywhere now on his own due to bad eyesight and deafness.

I take him out everyday sometimes to bingo or round the shops. He still likes reading and watching TV also plays on his X360 at night.

Its best to take each day has it comes some are bad but lots of them are good. It is upsetting seeing somebody who was so confident totally relying on you.
 

kingybell

Registered User
Feb 3, 2015
115
My mum in law was diagnosed last Christmas aged 56. It has been a learning curve and I had find out about benefits and medication myself by searching the Internet. If you want a hand understanding the minefield of benefits and support send me a personal message and I'll give you a hand.

The other thing I would advise is tell as many people you know about your wife's condition as I find they are more willing to help once they understand.
 

Mrsbusy

Registered User
Aug 15, 2015
355
Just a small but important answer to one of your questions, I would think it would be best to keep your dogs, so don't worry about that. Two reasons as people with dementia enjoy the company of their pets the same as before and also find them a comfort.

You will also benefit from their company, but also they are the best destress facility available. Even a five minute walk with them will help or even playing with them in the garden will help you.
 

maureenoconnell

Account Closed
Aug 27, 2015
3
You have exactly come to the right place, everyone here is so helpful. You will be surrounded by the right people who will give you great advice. And God give you strength in this time of adversity!
 

Padraig

Registered User
Dec 10, 2009
1,039
Hereford
My wife was diagnosed in her fifties and I chose to learn about Alzheimer's in my own way. Didn't have a computer then and only came on line for the first time in the final year or so of her life. The question I then asked: "Was there anyone on here was looking after their spouse on their own at home, as I would like to compare notes and maybe help one another?" It was an American site and the answer was: "No it's not possible." It's taken me a long, long time to understand why.