The Bedroom

I NEED assistance to live independently in my home. I NEED PA's - 'personal assistants'. I have a very good one Maria. not enough hours, but I like her, need her.

We get on famous and we have worked out a lot by now, about 4 years since she started.

But she took Christmas off and I was given a 'cover' PA. it did NOT work out ...at all. I didn't know her, she didn't know me. It just did NOT 'work'.

I am severely disabled. I can do nothing. I cannot make my bed, empty the commode, pick things up from the floor, hang up clothes, iron, cook, prepare meals, clean. I cannot do anything much bar use my computer and my voice!

I am accepting of that - largely - its not my 'fault', I have a neuro-muscular degenerative disease. This is my 'territory' now and I can't do much about it.

So a PA is vital. a good PA makes life liveable.

And the 'cover' PA was vital. as I had had no-one since the Friday before Christmas until yesterday. She was a nice woman, I'm not faulting her personality. I am questioning whether she really 'bothered' to do the tasks set.

PA's are trained - I think - mostly to fetec level 5 and I know my Maria has done a lot of courses to get to that qualification. Whether this 'cover' PA was qualified I don't know. but reality is, she didn't need any qualifications for the task in hand.

so lets look at that task.

The ironing was done...12 items - in an hour. she took an hour to iron 12 items... I had 2hrs of her time. I was going spare with her slowness.

I photographed the bundle done, sent it to my neighbour who does ironing for money, and asked "how long should this take? she answered 15 minutes.

 

After that, I said "can you see to the bedroom and make bed and empty commode - thanks (I always say 'thanks' after a request)"

That was surely clear?

so what did I find on entering my bedroom after she had 'seen' to it?

I took photos. Why? because I was distraught. because I couldn't do this myself...because I had had 4 hours sleep the night before due to pain. Because I'm on morphine...because I'm tired...

this is what I found after she had 'done' , finished my bedroom. She was now in the kitchen hanging up washing from the washing machine, I just went to the bedroom for something.

The bed looked 'done' but dishevelled, with a pillow at the end and a hot-water bottle there, un-emptied. I decided to see if she had actually made the bed or just merely pulled up the duvet.

 

this is what I discovered...underneath the duvet - yes, just 'pulled up' were my two comfy blankets, just as were left when I got out of bed. Simply scrunched up.  not touched, tidied, folded...just...left... My 'slippy (blue) sheet' which helps me turn over at night, was crinkled and a mess. (great for bedsores)... Pillows were askew.

 

This was NOT a made bed.

 

At the side of the bed on the floor I found the pink long sleeved T-Shirt I wore as pyjamas top, on the floor, with a dirty pair of knickers and the shoe horn which helps me put on my slippers.

 

 

Why oh why did she not pick it up - I can't. I have, as well as my neuro-muscular disease, severe spinal arthritis, and hip and knees all need replacing. I cannot, cannot bend down. I am in severe pain. I need her help.

Then I looked at the commode. emptied yes, but not covered and a loo roll was on the floor, I couldn't pick that up either...half under the bed. drawers were out. A mess.

 

On the low 'maternity' chair, a family item I inherited, were my clothes falling all over it, off it...and my sock gadget was on the floor, difficult for me to pick up. Nothing was folded or hung up...or put away... I had had no PA since the Friday before Christmas and that too was a disaster! (another blog needed) it was now 3 days since then.

Looking towards the en-suite I saw my pyjamas 'bottom' and slippers on the floor where I had to leave them on 'stepping' out of hem when dressing that morning. I get no help with dressing. Its all I can do to just strip and dress.

I was in despair. why did it 'get' to me?

why did I not say..."please can you do my bedroom PROPERLY"?  because I was exhausted, because I hate being 'bossy', because I am afraid of being called a 'complainer', because I know I will be blamed...because its simply easier to say "thank you" - not cause 'trouble' and just get her out of my house.

because I'm 'only' the 'service-user', because the agency might believe I am to blame, because I have no rights, because I'm now 'a no-body' but a disabled woman who should be grateful I got anyone at all!  Because I don't pay for this.

Anything goes.

Because I'm 'disabled', respect of me is immaterial, that my bedroom should be kept nicely, and my crap HSE bed, made comfy, is not priority. its NOT HER home.

its ONLY mine.   The disabled non-person.

I tell you about it...expose my bedroom...why?

because I AM human, because I do FEEL, because I deserve respect.

Because I feel we disabled people are made to feel as if our service providers do us a favour when, really, we should be dead. we cost money. care is not an option.

anything goes.

I tell you because it profoundly distressed me. I felt my disease had taken every part of my humanity. SHE had dishonoured me.

and I cannot say anything about it.

I am 'not allowed'.