And the world moves on…
Just had some devastating news regarding my dad this week.
He has been diagnosed with mixed dementia, which is both dementia and Alzheimer’s
disease. It’s aggressive and already at the stage of forgetting who we are, to
eat, take medication, change his clothes etc, not to mention the mood swings
and how he can sometimes be verbally abusive to my sister. The doctor at the specialist clinic was so off
handed about the whole thing when giving us the diagnosis and the way he spoke
to my dad was if he was rubbish or not even there. He offered no support,
medication to help with his anxiety and nowhere to turn to.
This got me thinking about how I was perceived by these
people. The feeling after seeing this doctor at the specialist clinic, who when
I started asking questions regarding his brain scan, demanded to know who I was
and if I was in the medical profession and how did I know this information, was very much that I had achieved or done very
little because I was in a wheelchair and disabled. By the look on his face it
was obvious that he had wrote me off being in a wheelchair. The look of amazement
and shock on his face when I told him I was at University studying psychology
was priceless! Needless to say his attitude towards me changed but not towards
my dad.
The same thing happened with his GP. Even though I was the one asking the
questions and talking to him his whole body was turned away from me and all
answers where directed to my sister and husband. This is extremely annoying to
say the least. It also seemed to infuriate him that I could use the same
language has him. This resulted in him picking up on any mistake I made about
dementia or the brain even though I told him I did not know anywhere near
enough information to understand what was going on completely, but that doesn’t
mean I can’t make educated comments or guesses.
At this point I also started to wonder if other people with disabilities
got treat the same way from so called “caring “professionals? I can never
remember being treat like this before the amputations or pre wheelchair use.
But this brings me to other small things that I have noticed but hasn’t really
hit home before now. Such as automatic doors into places. You have them working
or always open but have you noticed that if you have a pram or someone in a
wheelchair you are the one waiting for other people to finish using it and wait
for them to let you through? There can be 4 or 5 other doors for people who are
able and capable to go through, but no, they would rather que, tut and moan and
wait for you to get through, force their way through WHILST you are trying to
go through, my personal favourite…quickly jump in front of you or step over you
to go through ahead of you instead of thinking to themselves “ wheelchair/ pram
coming through I will just use my hands and arms to push another door open to
go through. What is even funnier with this is the look they give you as you are
waiting on them to finish and let you through, it’s as if you are shit on their
shoe or an inconvenience to their lives somehow, that’s if they can even be bothered
to look at you. Some prefer to pretend they are not ill mannered or ignorant by
looking straight ahead and not even acknowledge you are there.
Then there are the problem solvers. They can be a stranger,
care professional, friend or even a family member. The ones who will try to fix
everything when all you want is for them to listen, believe you when you say
you have tried and maybe understand a little.
Let’s face it, no one
will truly understand what it is like to live with your disability on a daily
basis or what you go through just to do something that before, or other people
take for granted. I wouldn’t wish that on any one, but trust us, if we say we
have thought every which way to try and do something or we tell you we can’t do
something or something won’t work, or even if it’s a case of we have a hang up
about doing something so we don’t want to do it, please, believe us, its true. Although
you mean well and are only trying to help by finding a solution you’re not. All
it does is infuriates us (well me anyway), makes me feel useless and as if am
trying to get out of whatever “it” is. It also makes us (and again by us I mean
me) feel like more of a nuisance and/or failure when we do try your “fix” to
the problem, even though we have told you it won’t work, and fail, because
guess what?....it wasn’t going to work like we said to start with.
My husband is a fixer and God love him, he really try’s to
work outside the box so I can experience and do what I want to do. Sometimes he
comes up with things I have not even thought of trying or considered, which is great!
But other times he goes on and on trying to find a solution even when we have exhausted
everything logical and inventive that won’t humiliate me or end up hurting or endangering
my life. It just he is so focused on trying to find a solution for me because
he wants me to be happy, that he doesn’t see when it stops being helpful and
becomes painful or upsetting because he is going on and on about it. At this
point it just feels that it is being hammered home over and over what I can’t
do and am useless.
Until just last week he didn’t understand why it would upset
me after a while of looking for a way around something. When I explained it to
him he told me that he knew it upset me when I couldn’t do stuff I wanted with
the family and all he wanted to do was make it so I didn’t miss out. What he hadn’t
realised is how much it could potentially upset me when there was just no solution
to be found and he kept trying to fix it.
Maybe it’s just me. It wouldn’t surprise me really. I have
always liked to be different.
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