Fantastic first diary entry from Jules about young onset dementia, support and work

Hello my name is Jules and I have been diagnosed with frontal temporal dementia. I am 54 years old. I was diagnosed at the end of last year after a long process of tests and procedures.

I was asked to talk about work. I have been in a management position nearly all of my working life and as a result of my diagnosis I have had to give this up due to the pressure and stress that can come with being in this position. I have had some seizures and am trying to control them by not putting myself in this situation. It was difficult at first and I wasn’t a very nice person and didn’t settle down at all. I am now working as a general assistant in the same store (?) with my assistant manager having became my manager. All very confusing. Luckily I have an excellent employer who has allowed me to pretty much come and go as I please. To an extent of course. And I have good colleagues who check my written work and any tasks I have to remember to do and often will prompt me to do things. I’m not sure I would manage without them to be honest. My employer has put together a risk assessment to make sure we are all safe and well. If I didn’t have my work I am sure my condition would deteriorate quicker. I just wish there was better help and support out there for people who want to stay in work as long as they could. Or maybe there is and I just don’t know about it.

I have applied for Personal Independence Payment but I’ve only been awarded the lesser rate. and to be honest I didn’t realise claiming benefits would be so difficult, having never ever made a claim before in all my working life. I have to pay in full for everything and as far as I am aware can’t get any help with prescriptions and things like that. Maybe I’m wrong. Maybe there is something there and like I say I just don’t know about it. I’m just waiting for my appeal to be heard and then I’ll probably reduce to part time. And it’s all a waiting game and quite sad when you get a diagnosis that your financial journey is reliant on someone else, often in a non-medical role.

Take care everyone,

Jules