Below is a list of incidents that have occurred to me under
26th December 2020
Its Boxing Day (AKA breath day) anyways my husband had a fall over a week ago now and is in hospital. I received a roster from my coordinator and so we are organising hospital visits around
them. Anyways in the hospital talking to physio and I get a call. Total roster f up. My
coordinator had gone on holidays and ‘apparently’ her and myself were the only ones with the roster. “Apparently’ no handover. So a new roster was drawn up, without contacting me or finding out anything about me and my situation. The phone call I received basically said ‘we cant find you anyone for 11.15am’ like im sitting in a hospital room 45 minutes away and it 11am now. I tell them this and ask what happened to my roster? Bla bla bla. So after the holidays I’m off to meet with the CEO.
- Rostering communition needs a shake up
- email roster to everyone involved in rostering
- Record keeping seems to be ad hoc
- Formula revisited for annual leave.
- HIRE more workers.
- Training; dont mop the floor around the disabled person FFS and leave them in an island of water.
- I dont want to feel like the workers are doing me a favour just being there. Wish me luck!
3rd February 2020
So this happened today. I wonder why I bother living!
I have been suffering from a tooth abscess for about a week, at the weekend I went to A&E for antibiotics at the urging of friends. I already have Arthrogrophosis Multiplex congenita so how on kind to this to be another affliction that I have to bare.
On 20th December my husband, my primary career at home, fell and broke his arm, snapped right in half at the shoulder join. Basically he can not have surgery and has to wait for nature to health it. He is 65 and has cancer which has weakened his ability the heal. It may take up to 2 years and he will never have full use of his arm again. He retired from work at the local hospital only 12 months ago.
After being discharged from after 19 days in hospital late in January he has had in home care come in and shower him and assist with medication for three weeks. That has now ended. He can’t even do up his own fly and wakes me multiple times through the night to assist him moving his pillow to make his arm more comfortable. Remember he was my primary carer.
Today I got a call from my care provider who said she couldn’t sort anything, my usual support worker was out sick, out for me today, this organisation has over 200 workers but apparently no one want to work? Look I know its not the most fun shift, its not standing in Kmart while you client chooses a book or sitting in Providore place on your phone while you client self stimulates by rocking back and forward in his chair. In my shift you actually have to do the unpleasant stuff/the hard stuff, the stuff that we can’t do and without you we would be in nursing homes.
I had been relying on this care as I crawl around the floor when I don’t have my callipers on and the floors need to be clean.
Her resale that I could wait for tomorrow is that it was ‘ONLY’ a cleaning shift. Subtext surely I could live in my own filth for one more day!
She in an accusing tone said she had been trying to ring me numerous times today. Now remember I had been to the dentist and had an anaesthetic and had my tooth removed and also had to have the abscess drained. Surely I could have answered the phone during this!!! (That’s me being sarcastic).
She rang and I was trying to talk to her through the biting down to stop the bleeding. When she suggested I get Support tomorrow instead. I said I had to go to work. I work for the education department and it was our first day back tomorrow. Her responds surely I couldn’t go to work if I was in so much pain. Subtext because people with disabilities don’t have jobs that require professionalism and at times a attitude of pushing through its just one day. My job is specialised I belong to a statewide team.
I hung up on her. I couldn’t talk to her, because of my mouth and for goodness sakes she wasn’t going to understand anyway.
About an hour later. I was in the bath trying to stop crying and pull myself together. Depression is exasperated by aesthetic and I was/am in a bad way.
I took the call. She said basically that she had done the best for me she could and found someone. Should I be eternally grateful to here for providing me with a worker that I pay for? I said to her that her attitude was inappropriate. I told her that without support worker people with disabilities would be dead. I told her of the man who recently died in his apartment of starvation because his support had fallen off. I said that she worked for people with disabilities who are the most vulnerable people in our community. She said she know all this as she is a support worker too. She knew it all.
She asked if I would like to talk to anyone else about this in her company and I said no. I could hardly speak to her, remember my mouth.
So what are we going to do about this!!!!! Why are we, people with disabilities treated so badly. Are be better off dead!!!
Today my daughter has: taken me to the dentist. Taken her father to the hospital to have his arm replastered. Got me home and given me a bath and watched that I didn’t do ‘anything’ silly in the bath. Changed my sheets. Done loads of washing. Made lunch for her father. Gotten me a milo. Later she will shower her father and medicate him. This has been her half day. She is 19 and a full time university student and will be returning to Hobart on 15th February. So if you read in the newspaper about two people aged 55 and 65 dead in their home because of lack of services it maybe us.
P.s my husband had his last care worker come in last Tuesday and is in the system to receive more support but as yet hasn’t had anyone, his daughter has been taking care of his personal care. So if my daughter wasn’t here. We would be dead for sure.
I’m in a bad way!!!
8th February 2020
Today i had a new support worker come! I feel we are kindred spirits growing up in regional rural Tasmanian both experiencing discrimination because of our diversity. They because of their ethnicity and of mine because of disability. We both understand the stares and unwanted attention that reminds us of our ‘difference’. They also understood my needs, i cant crawl on the floor if its not spotless. They are young but so wise for those years. They understand the importance of the work where others may judge it as menial and beneath them, not enough big dollars, they know what they are doing is making a huge difference in the lives of the people they work with. Pride in your job and knowing you are making a difference in someone’s life, enabling them to live with dignity is worth so much more. Its the food for the soul.
Tuesday 18th February 2020
Latest saga!! Got a call to say SW could not come at 4.30 -6.30 but another worker would come when she could. I called the after hours coordinator at 6.45 to find out what was happening and cancell the SW in case she did end up turning up. I ordered a takeaway over the phone and got it delivery via taxi. No Biggie BUT the worker I had planned was going to do our groceries and get up a takeaway on the way home, feed our doggies and put our bins out. FYI both my husband and i have a care plan and disabilities.