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.