Letters written by Karen Johnson to her husband, ex-footballer Brian, have been shared by the Sydney Morning Herald, highlighting the personal impact of dementia on a loved one.
Brian Johnson was a premiership winning fullback for St George before he suffered the cruel disease for over a decade.
He died in 2016 at the young age of 59.
Karen believes her beloved husband suffered CTE, a progressive degenerative disease of the brain. However, the only way of a sure diagnosis is via autopsy, which Karen couldn’t bring herself to do when Brian passed.
Brian formerly worked as the head coach at the now defunct Australian Institute of Sport Rugby League program, before it became too hard to work face to face and he changed to working from home. That’s when Karen began writing her letters.
They began as an outlet for Karen to write down her frustrations with watching her once strong and smart husband lose himself, and turned into a series of 40 letters which Karen often still reads to keep memories fresh.
Football related concussions and subsequent dementia or Alzheimer’s is never far from the news with Boyd Cordner suffering a hefty head knock this year which resulted in his subsequent absence from the final two games of the State of Origin series.
Some experts have gone so far as to say Cordner should retire due to his history of concussions.
Below is one of the 40 letters Karen penned to her husband, eloquently portraying the extremely sad, yet often neglected story of the loved ones who live with dementia.
Today we had a fight. Fighting isn’t something we do very often and as usual 5 minutes after it is over we are both apologising and having a cuddle. It really is my fault though. I am so intolerant of the little things. The things I know shouldn’t matter seem to take over my world.
“You wanted to help me hang out the washing.
“Once you started working from home – about 13 years ago – you took over doing the washing. It was much easier than me trying to fit it in before and after work or on weekends. Now you feel like I have stolen a job off you – something you could always do and you tell everyone that now I won’t let you do it – that I think you’re useless. I know it makes you mad.
“It was one of the first things noticeable about the effects of Alzheimer’s on your ability to plan and problem solve. Who would have thought you need planning and problem solving skills to hang out the washing! You couldn’t sort the colours from the whites; you couldn’t work out where to turn the dial on the machine to start the cycle; you kept lifting your head under the clothes line and cutting your scalp on the supports; you hung clothes by one peg secured anywhere on the garment and stretched it; you hung dirty clothes on the line; you dropped freshly washed clothes on the ground and stood on them and they needed washing again; you forgot to hang them out at all; you brought in wet clothes immediately after they had been hung out; you carried the basket to the line forgot why you were there….
“I know I should let you do it anyway and then fix it later – and I have tried to do that – but you get so frustrated and upset it just doesn’t seem worth it at all. I hate setting you up to fail and most of the time I am so tired the thought of redoing a job makes me want to cry.
“Today you were just jamming pegs on the line – so hard one of them broke – you weren’t even bothering to put clothes with them. You seemed to think you were helping so I tried to let you get on with that and hung the clothes myself. When it was finished you were so cross with me for not allowing you to help that you stormed off into the house.
“You told me that I have to let you practise so you can get better at it. I told you that you do the same things over and over again every day – like open the car door – but it doesn’t mean you can remember how to do it next time. I can’t explain to you that your brain is withering away and taking even the smallest of your skills with it. You think you are beating this hideous disease and I cannot tell you that you are not.
“I am so sorry for being so intolerant. I want to be the saintly carer that people seem to think I am but I am just an inadequate selfish wife who wants her clever, strong husband back.”
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