OPA... Other People's Attitude

[Sajehar]

I’ve decided to start a new thread on behalf of a carer friend who doesn’t have access to a computer. She wants to be called Sunflower, to protect her ID. The following quote from another of my postings will provide a little background info.

Sorry to here about your 'friend.' Some people can be very selfish and lack understanding, and if I'm honest, I was a bit like that too before I became a full time carer. I never gave anyone an ultimatum but I did lose touch with a friend when they became a carer about 5 years ago. Every time I rang her up to come out with me to the pub/whatever, she couldn't. And whenever I popped round to visit her all she'd ever do is talk about her mum which got on my nerves. My calls and visits dwindled until they stopped altogether. I know how she must have felt now. Some friend I turned out to be, eh!


Several hours after posting the above, and after much picking up of the phone and putting it down again before pressing the last digit, I FINALLY got through to her. Far from telling me to take a long run and jump off a short pier, she was actually delighted to hear from me!!!

We met up for a curry night pub meal at Wetherspoon’s and, although we got a wee bit tipsy, we mainly talked.
According to Sunflower, the main problem she experiences as a carer isn’t the job itself per say but OPA… other people’s attitudes.

Sunflower (SF) has been caring for her mum for about 7-8 years now, on her own, and her mum has Alzheimer’s. They’re by no means well off, but manage to get by with a lot of budgeting, etc.
She told me some horror stories about OPA. I’m new to caring. I’ve only been looking after mum, with dad’s help, full time for approx 4 months now. Therefore, I’ve yet to be subjected to OPA. I hope I do her stories justice.

Her biggest problem is her family. When they occasionally visit, one of two things always happens.
1) If their mum is having a ‘bad’ day, or the house isn’t as tidy as they consider proper, then she’s accused of not looking after mum properly, and she should pull her socks up, etc.
2) If their mum is having a ‘good’ day and everything is ship shape, then she’s accused of, “You’ve got a cushy number going on here,” and, “It’s alright for some, sitting around all day watching telly.”

Hurtful and inaccurate though these kinds of comments are the one that gobsmacks her is, “Mum seems fine, why don’t you get a proper job, even just part-time?” This one takes her breath away! I shall quote her now, as best as I can remember.
“I mean, for crying out loud, what kind of logic is that? That’s like saying to a house wife why bother continuing cleaning coz the house is so clean… Durr!”

Ironically, Sunflower did suggest getting a p/t job a few years back, asking them for help in this. They threw their hands up in horror… But what if mum sets the house on fire or something… could you live with yourself?
When she reminds them of this, they tell her she’s exaggerating!

And then there’s the neighbour. He only ever sees her mum on a ‘good’ day when she wants to go into their titchy back garden, and can hold a reasonably lucid conversation.
He’s collared Sunflower in the street, accusing her of being a scrounger and exploiting her mum’s supposed frailty. When she’s tried to defend herself, he ends on, “If she’s as bad as you say, why don’t you get her put down… but then you’d lose your benefits WOULDN’T YOU!” and he storms off.
The thing that gets SF is this man MUST hear her mum’s ranting’s, etc through the paper thin walls, “So why does he do this to me? It’s like he lies in wait for me. What have me and my mum ever done to him?”

Sunflower has given this kind of behaviour a lot of thought, and has come up with some fascinating theory’s, and they're not pretty! I’m still kind off coming to terms with them myself.

But first I want to know if any of you lot have experienced something similar to Sunflower. I personally haven’t (give it time SF has told me and I will, sure as night following day.)

Be warned. I intend using all stories given to me and Sunflower to present to my MP in a report. If you don’t want me to do this with your story the simply use the code, “For your eyes only”.

Sunflower’s fave song by the way; mine’s ‘To dream the Impossible Dream.” And we sang both at the top of our voices (tunelessly) on our way to the station for her to make her way back to her mum. Maybe we were a little bit more than just tipsy… it’s allowed!

[bowlingbun]

M was brain damaged at birth, the cord was round his neck. He looks normal but has severe learning difficulties. When he was little, I dreaded going shopping with him, he screamed to get out of his pushchair, but my family still needed food! People were so judgemental and hurtful. No one ever came up to me and said "Can I help you?" He couldn't speak until he was about 5, people would say "You know you need to talk to a child to get it to talk back to you?" completely ignoring the fact that M's brother was completely normal, exceeding all his milestones! Then there was the Childrens Department team leader who told me that the summer residential play schemes could only last five days as the staff got too tired and needed a break. What about us parents then?!

[Sajehar]

Bowlingbun,
That's awful. But it's exactly the kind of stuff SF was describing to me; different in details, but same thing.

I can remember my mum wanting me to play with a girl in leg braces.

"Mum, can I have some friends around for tea?"

"Yes... why don't you invite that nice girl with the leg braces?"

"But she's so boring."

"She's just shy. Once you get to know her I'm sure she'll liven up."

"No she won't, she just slows us down!"

"Don't be so unchristian! How would you feel if you couldn't run about."

"But I can!" and then ran off before she could nag me anymore about the girl with braces (forgotten her name now.)

She pulled the power of SHE Who Must Be Obeyed, by telling me if I didn't invite this girl, then I couldn't invite anyone!

"Oh, all right then." But it was resentfully done.

But my mum was right. Once I'd done my arm in, I was forced to play with her, as my old mates deserted me. I was now too 'slow.'
We spent many happy hours playing together. Did we end up life long friends? Did we heck as like.
As soon as my cast was off, so was I. Being the ruthlessly heartless little monster I was, as all kids are deep down, I abandoned her in favour of my 'real' friends.

Now, this kind of behaviour can be excused in kids... but grown adults!

[crocus]

Hubby has an acquired brain injury due to a road traffic accident, but looks quite normal and, apart from some slowness of speech, sounds pretty normal too. Ive had people say to me "so how exactly is he disabled.......?"
Even some medical people are taken in. Im having battles because one in particular has said that there is no sign of any brain damage and he is only depressed (no actually, he has a scar in his temporal lobe and he has epilepsy too, apart from anything else)
We went on a trip out with a group of other people who all had ABI (acquired brain injury) and the mini-bus had a disabled sticker in the windscreen so parked in a disabled parking space. As we all got out one man who was just passing by said very sarcastically and very loudly "Do you need any help with your wheel-chairs?"
I work part-time and have on several occasions had people say something like - must be nice to have a rest instead of working

[Sajehar]

Crocus, sounds just like Sunflower. I'm gobsmacked

Have we really descended so low!

[bowlingbun]

After a car accident it was excrutiatingly painful for me to walk, due to damaged knees. I was challenged when parking in a disabled bay - purely because I drive a Land Rover Discovery, which I genuinely needed for my business! In a local garden centre coffee shop, I was asked to leave the shopping trolley at the entrance of the coffee shop. I explained I needed it to help me walk. I was told if I was disabled to go and get a wheelchair!! Yes, I did make a formal complaint about that one - after all, I was trying desperately hard to maintain what little mobility I had left.

[Sajehar]

This gets worse... SF warned me!

[Treez]

What can you do? you just have to smile sweetly and move on...much love all xxx

[sturdygirl]

Hubs couldn't see his usual GP one time, he needed to be seen so had no choice but see another.
This one obviously hadn't read any notes, told Hubs to start cutting the depression meds and go for a walk, he was also very flippant about the depression as if you can just shake someone out of it.

Hubs also suffers anxiety, agoraphobia, panic attacks and the GP obviously didn't notice the crutches Hubs was using due to his arthritis & Jhs.

His attitude knocked Hubby, guess who had to deal with the aftermath?

[Tristesa]

All of these stories are much worse than anything I have encountered so far, most of them based on complete strangers making critical judgements without knowing (or trying to discover) any facts about the situation. Some, though not all, could be down to simple stupidity and ignorance in the hostile strangers and an inability to make informed judgements, rather than actual malice. They evidently think they have understood the situation when they haven't. There are many situations in life in which it is quite hard to tell whether people's behaviour is based on real spite and cruelty or only on limited intellectual capacity and reasoning power, lack of imagination, or other mental and behavioural traits which are actually minor disabilities themselves.

My own experience of OPA is based chiefly on the conduct of members of my husband's family, two of whom seem to have taken his illness as the ideal opportunity to take revenge on me simply for existing. At the beginning this came as a severe shock. The discovery that there were people whom I had innocently counted as friends for 40 years who had apparently never liked or respected me was a blow that I didn't need as I was trying to come to terms with my husband's dementia and learn how to cope with it. Now I am glad I have learned who my real friends are. This is the other side of this sad situation: strangers can be dismissed from one's mind after the first shock; 'friends' who prove to be anything but can be cut out of one's life, or at least kept at a distance; but in the process, one also discovers wonderful new friends, people who are genuinely kind and generous.

Tristesa