Monday, 29 June 2009

sleeping - hibernation

well that's what I feel like doing. I have been sleeping a lot so nothing much to blog about. Have been getting into Facebook and finding people I know. Playing Bejewelled.

Housework today with my support worker. That's it really. Just keeping warm. Oh, the new heater for the bedroom works a treat. :-)


Saturday, 27 June 2009

Misty Moisty Day

Had a busy day today (well compared to when I sleep until 3pm). Really had to go and give a blood sample at the QEH so that they can test to see if the inflammation is abating and if my liver or kidneys or red blood cells are getting wrecked by the medications. Had been trying to get there all week but it has been raining a lot or I have been sleeping.

Was good to get out. A little sprinkly rain for a start, a misty moisty day. A two stop train trip and then a walk (wheel) to the Hospital. Went into Lizzy's cafe and had some yummy cauliflower and potato soup. Gave blood. NO WAITING. Must remember that Fridays are quiet as I have to go weekly for 5 weeks.

Then off to Bummings and Havy Normal to look at heaters. Bought one and carried it all the way home with it sitting on my footrests. Put it together and got it working. It is a tall oscillating one with a timer and a remote control. For the bedroom so I don't lie in the freezing cold if I fall again.

R came around and made a tasty stir fry including some bok choy and broccoli from my garden for tea and then went home after a yak.

Nice day.

Thursday, 25 June 2009

Gina, at last your questions answered!

G'day Gina and all,

I hadn't forgotten you. As it's while ago this is what you said/asked in response to my post

Gina Wilson-Burns said...

I have been thinking about this one a lot, and coming back and re-reading it often. The more I think about it the more it makes sense.

As a mum of a 5yo boy with profound, multiple disabilities I am becoming more and more peeved at the Carer term. I have yet to send in my resignation as a carer to Mr Rudd as, at present, the $50 a fortnight does come in handy - goes some way to offsetting the $68K p.a. shortfall we have as a result of our child having a significant disability.

But, and this is where I would like to hear your opinion... What if our son (and every other person who 'qualifies their carer' for carer payments or carer allowances was actually provided with a "disability allowance" or "disability payment" until they turned 18 and then were privy to the disability support pension if they qualified or needed. As his parents we would be responsible for using this money appropriately - would it need to be more formal - I don't want to write off my parental rights and responsibilities - or be denied them just because my child has a disability - so this is the area I get most confused.

Get rid of the Carer Allowance and carer payment entirely. That way there is no "carers" just people who care or people paid to care. There are plenty of people happy to take the "carer" payments but would find taking a "disability payment" slightly confronting (this is good i think).

At this stage I do feel i need to provide a voice for my son but I really really really abhor the term carer - I am just a mum.

What I think is quite simple Gina and is probably where you are basically at. We are all people. Children are looked after, provided for and decisions made for by their parents until they reach the age of 18. Adults look after themselves, provide for themselves and make decisions for themselves. Regardless of race, gender or ability this is how it is for all people.

But as we know you get turned into a carer cos your child has a disability and I turn into a person with a carer cos I have a disability. (I don't have a carer but the assumption is there).

A "Carer" is a person who assists, looks after or cares for someone they are related to or "care" about for no money or a small pension. A "Support Worker" is a person who is paid a wage to assist a child or adult living with disability. We should have parents, spouses, relatives and friends around us as is normal in life and Support Workers to assist us.

Parents who have a child with a disability should get a Disability Allowance (as you said) to assist with anything that levels the playing field for their child and themselves. It should be assessed and automatic and never dependent on funding mingyness. Any parent of a child living with disability must have the same (no more, no less) responsibility for that child as for a child not living with disability. They must be allowed to be a parent and not labeled as anything else

When the child reaches the age of 18 that Disability Allowance is passed into their hands for them to manage and make their owns decisions as adults. This new adult may also then be eligible for a Living Support Allowance which provides for ordinary living needs, food, shelter, clothing etc should they be unable to earn a living for themselves.

IF that adult person with a disability cannot manage their own affairs, financial, personal or otherwise then guardianship must always be applied for and legally granted if needed. NO ONE should be allowed to have informal control or decision making powers over any other adult because they are related by blood or love (just because that adult needs different assistance than usual people). NO ONE!!!

Also the Allowance for the costs of disability must be over and above Living Support and never means tested. Ordinary living support is to be provided and paid for by the parents of their children with a disability as is the case with all children.

We should never be forced into dependency on others as adults. I mean dependency on an unpaid 'carer'.

Everyone in this world is interdependent on other people but people living with disability are forced to be DEPENDENT on others for their whole lives. Parents are forced to care for their adult children living with disability. This must not continue.

It's simple as we know. People living with disability must be afforded the same means and rights as all people.

Hope that clears up what I mean at least Gina. I have been reading quite a few blogs written by parents of children living with disability lately and I must say I am heartened by the fight in you all. The fight in you for the RIGHTS of your children to live an ordinary life. Go mums and dads - more power to you. Use it right for all our sakes.


Wednesday, 24 June 2009

My New Vege Garden

First the old one

It comprised three 1 m x 2m concrete raised ponds originally used for keeping of water plants for sale (when this place was a nursery). They stood about knee height and great for me when I was a wobbly walker. Only walking space down each side tho - no wheelchair access.

So they haven't been used for 4 - 5 years since I have been using the chair. But then came:

That was temporary until Finally this is it now. Yay!!

This has happened over the past 8 months. Roy smashed up the old concrete gardens. That was a helluva job well done!!

Some more from just the other day. Seedlings up. Easily weeded. :-)

It's all so fantastic. I love it and having been eating the produce already.

Tuesday, 23 June 2009

I sometimes hate titles

Well really it's hard to blog. Hard to do anything.

Crohn's sucks.

I am extraordinaryilyilyily tired. I have put on weight cos of the steroids which I am back on again again. They also can weaken my muscles. If steroids don't work then there is another drug they can try but that has risks for liver and other organs. Crikey.

I get stuck on the toilet and have to do extraordinary things to get off alone.

I fall again in the middle of the night - freezing cold, naked and with my thigh bent over an upright footrest and legs trapped under the other footrest. slammed shoulder and head into floor as I went down - ended up on my side. Jammed up against the bed and hanging off the footrest by my thigh. OOOOOOOWWWWWWWWWWWWWWWWWW. Can you picture that.

Anyway it was only about 12 minutes till two great ambos and neighbour M were with me. In my pain and position I had to instruct them how to turn my wheelchair on and turn the speed down and then drive the wheelchair out from under me while the other ambo lifted me a bit with a belt. Fark. But of course the wheelchair driving ambo drove it the wrong way and jammed me up a bit more. OOOOWWWWWW. Never mind they get it done and get me into bed and are respectful, careful, fun and not bad looking either.

M hid in the hallway for awhile until she was assured that my bone wasn't poking out of my leg. After the ambos left she stayed with me for nearly an hour to make sure I warmed up and that the shock settled.

12 minutes is a long time to shout OOOOWWWWWWWWWW a lot and contemplate my lot and my future. Scary.

That fall was last Wednesday night and I am still so weakened by it. I have been resting and getting extra support. Lucky I have been saving some hours up. I haven't been able to do work I said I would (just gathering and compiling some proformas and position descriptions and rewriting a bit). Too tired. Gotta save the arm energy for getting off the loo.

I am sleeping 12 - 14 hours a day if I can.

So that's the dark side sprinkled with bright bits of light.

Some good stuff now.

On Sunday T came round and we got a lamb roast going. Plus of course roast spuds, pumpkin, onion, and beetroot with gravy oh and brussel sprouts perfectly cooked by me YUMMMMMM. Marg came over and the three of us got tucked in. We all watched a movie that was a gift from a friend. Called "Once" and a nice simple movie to enjoy. We ate some chocolate and raved on. Had a good arvo.

Sitting around inside with the heating on while it rains and blows and sleeping all day are nice. Jimmy cuddles up to my legs when I'm in bed and Callie keeps my lap warm when I'm up.

My new vege garden is going well. Watch out for pics and the story soon.

Tuesday, 16 June 2009

Miss Molly

My Miss Molly cat (the 15ish year old one) has a nice warm coat of earth since last week. I had to take her to the vet as she had stopped eating and wasn’t at all well (she has had ongoing overactive thyroid problems) and the vet and I decided to give her a little help to go over the rainbow bridge to cat heaven.

I hate doing that and always feel like a hypocrite as I am not into euthanasia for humans (really only because it is the thin edge of the wedge and people like me will be in line for it later when someone decides MY life is not worth living). Ah dear!!! That’s life and death.

I really miss the old girl who used to go round shouting for food all the time.

Callie and Jimmy had a look at her and a sniff when I brought her home from the vet. I always let the other cats see the other one dead if possible to let them have some idea of where they have gone.

So Callie is top cat now. Except I am actually top cat. Callie says "well that's what you think!.

Anyway thanks to the old Moll I am back on the blog again.