My carer ? My driver, my partner, my child !

Since my illness has come galloping into our lives, we’ve had to adjust, adapt and organise our lives so much ! From white boards to digital clocks that tell me what day it is, but that’s just objects and subtle changes.
It’s the other major things,
things that others who aren’t involved in my day to day life won’t or can’t see.
It starts in the morning, I wake up and sometimes can’t remember what comes next, i lie there racking my brain, trying to remember, sometimes I shout my wife and she has to explain and hint about getting up, gentle reminders to shower, to dress, to put on clean clothes.
Otherwise without these reminders I wouldn’t remember to shower and dress in clean clothes. I forget to eat, I forget what I’ve actually eaten.
I have to be helped to get dressed sometimes if there are lots of buttons etc. If, when leaving a room and my hands are full with cups, etc or something similar and the door in front of me is shut, I CANT GET OUT ! The first time this happened I just sat down and cried, I actually sobbed ! My wife came in and she cried too. How we must of looked to the outside world, both stood there crying, me with my hands still full .
Watching tv, losing the plot and having to ask and repeat myself until I get bored watching and all the while my patient family just keep answering and helping me. At 53 years old I can’t ever go anywhere on my own ever again, I don’t drive and I can’t cross roads, who has to accompany me, guide me and protect me ? My close family ! I was supposed to protect them, look after them !
But enough about me, it’s my poor family that have stand by and watch their husband, their father, and their grandfather slowly forget, slowly disappear. It shouldn’t be my children’s job to tell me my pants have fallen down cos I haven’t buttoned them up, or remind me I haven’t put my pants on at all. My youngest, aged 16, shouldn’t have to pick me up from a care home, shouldn’t have to stand there and see my future, see what’s to become of me.
My whole family have dementia not just me, they all become unpaid carers, who are on call 24 hrs a day. This can’t be right !
Even when I’ve forgotten, they will remember, they will never forget ! They don’t have that luxury.
Believe the saying ‘ that one mans killer is another mans saviour’ !
The biggest changes, the biggest problems,have all mostly been for my family, I don’t even notice some, because some changes are subtle, but my family do ! My children do, My unpaid carers do ! Every day ! !
We all laugh together and we all cry together, we try to have fun with Mr.dementia, humour is so important, it’s the last thing I’ve got that hasn’t changed.
So for carers week please remember the 1000’s of folk that care, that care 24’hrs a day,
the carers that are so emotionally involved, the carers that cry, the carers that try to laugh, the carers that one doesn’t see and especially the young carers that should never be !
These full time carers and volunteers that never get paid, that never get recognition !
The carers that will never, ever have the luxury of being able to forget !

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10 thoughts on “My carer ? My driver, my partner, my child !”

    1. Thank you, I wrote it because I hear all the horror stories and all the “it’s all about me ” stories. This is about the unsung heroes, the folk that never complain but just care and the youngsters that can easily be forgotten about xxxx

  1. Fantastic of you to open people’s eyes about the effects of young onset dementia – and also to help people think of the family around you. My daughters were 9 and 7 when I started caring for my mum. They regarded their chance to help support her as their privilege. Reading your blog has also been a privilege; thank you. As a society, we certainly need to fully recognise the input of family carers and do all we can to support not only the person with dementia, but also the team around them.

  2. A great article Chris and so many people respect the work that you and your family are doing to raise awareness.

  3. Thank you for your truth honesty bravery and kindness you are a wonderful man and that makes it even harder for your loved ones because they think , why him, personally reading about how you and your wife cry together that is something we really do a lot . Please keep doing all you do you have a specail place in my heart and please pass on my thoughts to your loved one,s . Love Jan . X

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