Hidden Carers.....

[Darthvadar]

Google the words 'Disabled', 'Disability' and 'Carers' and you'll come up with thousands of articles about carers taking care of people with disability, but articles about people with disability who ARE carers appear to be as hard to find as manure from a Rocking Horse (Yes, I've cleaned that up, but you get the message!)... Yet, shock, horror, get the smelling salts out, and sit down in case you faint from the shock of this news, but YES, we do actually exist!...
 
Let me explain myself... My name is Carolyn, I'm female, Forty-six years old.. I'm a wheelchair user, oh and yes, I'm a carer!... I'm caring for my mum, Elsie who's also a wheelchair user, has osteo-arthritis, osteoporosis, is in kidney failure, and is on dialysis...
 
I've been asked how I can do it???... The answer is in common with many other carers, I'd imagine, that is, with difficulty... Nobody else is going to do it, and it has to be done!... Also, believe it or not, I love taking care of Mum... I wouldn't have it anyother way...
 
No, it's not easy... I never expected it to be... It has it's physical challenges... I've had to adapt techniques... For example, I put a rubber band around the syringe when administering Mum's injections (gives me a better grip)... I use cups with big handles (same reason)... I do all the things other carers do, some of which I won't go into due to them relating to Mum's dignity, but the usual things like shopping, cooking, laundry (lots of that!), prescription ordering and collecting, personal care, liasing with docs, nurses, OT's, keeping track of, and attending Mum's hospital appointments etc, are all mine!... Other carers have asked me how many hours help I get per day???... Can't help but laugh at the incredulous expression on their faces when I tell them that I get all of three hours Home Help per week!... Mind you, that's a vast improvement... It used to be one hour per week!... Respite???... What's that???... Never had it!...
 
Then there's the additional barriers I encounter from the medical profession... The response I got from the medics was hair raising in the beginning!...  They looked at me, and they didn't see a mature woman, who loves her mother and is more than ready and willing to care for her... They saw an individual with a very significant disability and not a candidate for care provision of any kind.... Believe me Folks, that didn't last!... Too many medics left meetings with me hosting a flea in their ear!...  Like every other carer, I'm the best judge of my abilities...
 
The reason I wrote this article is to bring carers with disability out of the shadows... I believe that there are several reasons we are not seen... Nobody expecting us to be caring can lead to false assumptions that we're not 'out there'... But also I believe that there may in some cases, be a more sinister, albeit unintentional, reason that carers with disability don't stick their heads above the parapet... Imagine you're a person with a significant disability, have perhaps always been dissuaded form taking on responsibility of any description because "You'd never be able to manage that, Love...", so you've never built great confidence in your abilities... Then suddenly, an adored parent becomes unwell, and needs care... The person with the disability gradually takes on the carers role, and does it well... Carer and Caree are happy and 'muddling through' so to speak... But at the back of the carers mind the lingering doubt is there... "If I let anybody know that Mum or Dad need help, and that I'm looking after him or her, they'll say I can't do it, and they'll take Mum or Dad away, and put them into a home"... You and I know that it's highly unlikely, but it is a very real fear... Perhaps these are the carers who are most likely to be isolated, and the very people we need to seek out, and reach out to...
 
At the recent launch of Carers Week at the Mansion House in Dublin, a speaker described carers as 'coming in all shapes and sizes'... I hope the gentleman who said that will forgive me when I add to that by saying that carers come in all abilities and disabilities, too!... 
 
Big shout out, and best wishes to all Family Carers out there!....
 

[MooseMom]

It always bugs me when I hear of "experts" swanning in, trying to "help" but end up doing exactly the opposite.  It is demeaning.  We as a society tend to lump everyone with a disability into the same bag, and that's just stupid.  How dare other people define what our abilities or disabilities are without deep discussion with us?

Good on ya!

[Darthvadar]

Hi Moose....

Yes, I think that some Healthcare professionals have their heads stuck so far up their own a***s that they can kiss their tonsils!!!...

I often say that God Almighty, ooooops sorry, I mean the Hospital Consultant, is VERY like a sea gull.... He flies in, flaps about, squalks loudly, s***s on you, and flies back out again!!!... Those who do that to Mum and I once DON'T get to do it a second time!!!.....

I'm not known as 'That b***h in the Wheelchair' for nothing, you know!!!!!..... LOL!!!!...

Love to all...

Darth....

[galvo]

Onya Darth! You're a ripper!!

[silverhead]

Darth, methinks we share a similar dark sense of humor, I have on occasion run into certain people in the medical profession that after a battle to get our way I tell them "you seem like a person who needs a "Navel Window Kit", if they bite on that i explain it simply is a faceted glass "jewel" that is placed in the navel so that the wearer can see where they are going when they are walking around with their head up their A**,
I've finally attained the age and outlook that I really don't give a damn about their "feelings" if it interferes with how my wife's treatment is handled......
Tom

[Darthvadar]

Hi Silver....

Yep.... I've gone WAY beyond that!!!!!.... As far as I'm concerned, they're not doing us any favours... They're getting well paid for providing a service, and dammit, they're going to listen to us!.... One doc got a bit stroppy when I told him that he shouldn't use the canula he was planning to on Mum... Her veins are too delicate... He asked me if I thought I was a medical expert.... I replied 'Nope... Just an Elsie expert.... Living with her for forty-six years'.....

Her Neph's briliant though.... He'll say 'Hey, what do I know???... YOU know Elsie far better than I do... I bow to your superior knowledge!!'... Wise man!!!... LOL.......

Love...

Darth....

[MooseMom]

Oh let's face it...too many docs have an ego the size of a small planet.   On top of being disrespectful, ignoring a patient or a patient's caregiver is just bad practice.  You'd think a doctor would want as much information as possible!  And again let's face it...we have a tendency to infantilize people with disabilities.  We tend to infantalize people who are old, too.  I told my mom many times that if she needed something, she'd have to tell me, that I wasn't going to treat her like a child who couldn't put voice to her own needs.

[jbeany]

Yup, I was Gram's primary care giver for all the years I was on D.  I didn't live with her (because we tried that and nearly killed each other) but I was the one doing bills, chores, organizing all medical care and in-home care, and all the other things needed to keep a mildly senile, stroke afflicted woman in her late 80's and 90's happy in her own home.  When I ended up in the hospital for 2 months with transplant complications, it took almost a dozen people to take over what I had been doing while I was sick enough to have really needed a caretaker of my own.   

You do what needs to be done.  Because there really isn't any other option.  Period.