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recently diagnosed 47 early onset dementia

paulinegg

New member
Mar 4, 2022
1
0
recently diagnosed 3 weeks.
I am in work a new job started 2 yrs previous.
Before the diagnosis i was looking for a new job as this job was not working out , stepped on someones toes and for last 10 months feel like i have been persuaded to leave.
With my recent diagnosis i am really worried that when i tell them they will try harder to get rid of me in .

I am early stage but who is going to employ me with early on set dementia . Me and my partner have savings so i will not get any help if basically forced to retire , dont know how we are going to survive long term ive told him probably best he divorce me .
Been told to slow down the dementia i have to cut down stress . Im laughing but i really want to cry and hide.

Sorry for my waffle trying to be positive and i know their are a lot of people on here and in life in a lot worse position than me .
Just finding it harder to see a way forward .
 

nellbelles

Volunteer Host
Nov 6, 2008
9,645
0
leicester
Hello and welcome to DTP @paulinegg I hope you will find the forum a helpful and supportive place.
I also hope now you have started a thread you will continue to post.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,473
0
Yorkshire
Hello @paulinegg
A warm welcome to DTP

It must be a shock and unsettling for both you and your husband to receive a diagnosis and at such a young age

I'm sorry that work has been difficult for you ... it may be that having the diagnosis might help your employer/colleagues understand some of the issues ... I wonder whether it may be good to talk to a union rep first, if you have one, so they can look into what support may be available, and maybe consider retiring early due to ill health, which is something to check over with your company pension scheme

don't go rushing into any major decisions, give yourself and your husband time to think and feel and just breathe for a while

there are some legalities that will help ... arrange LPAs for you both and up to date wills ... I'm not sure a divorce will put either of you in a better position, though separating out finances may be a good idea, and getting done any maintenance on your home

If you are concerned about paying for care, be aware that in any financial assessment your home is disregarded as long as both or one of you live there so will not need to be sold

this may sound trite, do treat yourselves to things that bring you pleasure and do things you enjoy because you deserve some good times together

Please do keep posting with anything that's on your mind and members will halp all they can
 

Roni R

New member
Mar 14, 2022
4
0
Bristol
This is VERY GOOD advice !!
Seperate your finances, put all your Savings, Safe with someone you dearly Trust & make ALL your Wishes Clear in a Will, everything from £, property, possessions & of course, what you.d prefer later on with regards to your Personal Care, (who, where & when) & any preferences & wishes you have regarding a Funeral ♥️ Put everything down in Black & White & give your loved ones, each a copy. ♥️
Im 46 & im doing exactly the same because i suspect i have Picks Disease like my Mom had, ive learned alot from 8yrs of Caring for her. Im a single mom of 2 & need a Diagnosis asap to plan ahead.
Lifes too short, enjoy it while you can, go places & do things youve always wanted to do ♥️
 

Annier68

Registered User
Oct 9, 2021
21
0
Hi. My husband was 52 when diagnosed. POA, apply for both esa and pip (neither means tested) and apply for 25% discount on council tax. Give yourself time to come to terms with diagnosis. We still are but it’s getting easier. I know as times goes on thing will become more difficult. We’re trying to make memories with kids while we can but also keep everyone happy which isn’t easy.
Take care.
 

Roni R

New member
Mar 14, 2022
4
0
Bristol
Hello @Roni R
A warm welcome to DTP
I hope your GP is helping you with your concerns
Hi my GP is helping alot, but the whole process is so slow, eliminating other things 1st before getting a diagnoses is very frustrating but im determined to find out, no matter how long it takes, im only 46 so i just think the sooner i know the better.
 

Roni R

New member
Mar 14, 2022
4
0
Bristol
Hi. My husband was 52 when diagnosed. POA, apply for both esa and pip (neither means tested) and apply for 25% discount on council tax. Give yourself time to come to terms with diagnosis. We still are but it’s getting easier. I know as times goes on thing will become more difficult. We’re trying to make memories with kids while we can but also keep everyone happy which isn’t easy.
Take care.
Hi thanks for your advice, ive applied for PIP 2mths ago & been refused ESA regarding CFS.
I spose i.d have to reapply once i have a Diagnosis for FTD.
I get Council Tax Reduction atm 👍
Its never easy to please everyone, i taught my children how to comprimise at an early age & sometimes in the moment, its hard prioritorising whats most important.
My 2 kids were young & also i cared for my Mom for 10yrs - i know its very hard. Now as Teens 16+19 i can talk to them about their Nan & similarities with my own health, so that understand what the future holds, in a Positive way !! ♥️
 

Annier68

Registered User
Oct 9, 2021
21
0
Well done you. We applied for pip in Nov and have just heard we should have a decision in 7 weeks. We applied for esa before diagnosis and updated when diagnosis came through and got it. There’s so many rules for it though. Hardest part for kids was dad isn’t going to work again. We’re getting there slowly but be kind to yourself. X
 

canary

Registered User
Feb 25, 2014
18,878
0
South coast
My OH was refused ESA too, @Roni R , but we appealed and got it. He doesnt have a diagnosis either. It may be worth contacting Citizens Advice - we found them very helpful in knowing how fill in the forms and how to phrase things
 

Roni R

New member
Mar 14, 2022
4
0
Bristol
Well done you. We applied for pip in Nov and have just heard we should have a decision in 7 weeks. We applied for esa before diagnosis and updated when diagnosis came through and got it. There’s so many rules for it though. Hardest part for kids was dad isn’t going to work again. We’re getting there slowly but be kind to yourself. X
Good luck with PIP, i hope gwt good news 👍 apparently i haven't made enough N.Ins contributions to get ESA, because of the CFS ive hardly worked since 2018 x
 

MarieD

Registered User
Dec 26, 2021
38
0
So sorry to hear this as your so young you must be feeling so stressed and upset coming to terms with this .
As others have said I wouldn’t rush into anything
I don’t think legally you have to inform your employer and if your well for now I think I’d hold off telling them if I were you.
Hopefully medication may help with whatever symptoms you have at the moment
Like others have said I’d concentrate on getting your affairs in order change any joint bank accounts and get your POA in place and your will then that’s less for your husband to worry about going forward.
Good luck with everything x
 

Cazcaz

Registered User
Apr 3, 2021
291
0
As others have said there are several things to get sorted

1 have LPA for finance and LPA for health sorted asap
2 divide all savings into your own names. If the time came for you to have a financial assessment for care then any money in a joint account would be split 50/50 between you both, irrespective of who put the most into the joint account.
3 remember while your husband lives in the hone you have then it is safe, neither of you can be forced to sell it.
4 be aware if you went into care home, your husband would have to pay all household bills without using your income or savings (excluding maintenance of the home). This can come as a surprise to the OH of a PWD.
5 I would counsel against telling your employer until your job is affected by your condition, or at least until you have had a considerable amount of time to deal with your situation.
6 there is no “advantage“ to divorcing, quite to opposite. If your husband divorced and moved out then your home would have to be sold to pay for your care when the time came.
 

Annier68

Registered User
Oct 9, 2021
21
0
Esa is so hard to get there are so many conditions to get it. I found citizens advice helpful and our council has a benefits checker who helps you understand what you can get. I went straight to solving financial things as it was something practical I could do. The emotional and mental figuring out took much longer and I’m still getting counselling. My hub is managing ok with good/bad days. Good luck and take care x