Well after months of phone calls etc, we are finally getting some more help.
Friday week ago, DSQ came out and had shown us a copy of all these things they had in place for us. Only thing was, they had forgotten to tell us about it. More calls, emails and home visits and finally it looks like it is all sorted.
Ryan will get another day a week that he will go out for 4 hours to do work on his photography course he is doing. He will also get 1 day a month for him to go to the Gold Coast to see his girlfriend on her day off Uni. We get back out date night, and will be able to go out every fortnight. Plus, and this is huge, they might be able to brokerage the hours for personal care for when we are on holidays so that we have someone help instead of just ourselves.
There might also be a part time job for Ryan in a couple of months time as well.
To think that all we asked for was an extra 2 hours a fortnight!! This is going to help us heaps and there was the acknowledgement from DSQ and our service provider that they were at fault for not telling us about the $5000 underspending we had and that was just on post school funding.
I finally feel like we are getting somewhere.
Monday, 12 March 2012
Monday, 5 March 2012
What a weekend!!
Wow, so much has happened the last few days. I will work backwards.
Sunday - I had said that I would do the Queensland Muscular Dystrophy's walk this year, which kicks off Bow Tie Week. Like normal, when I do these things I automatically enrol the family in as well. Headed off to the city at 9am, to get to the corner of Elizabeth and Edward to meet some friends. While waiting, I took advantage of the time to take photos of buildings I use to work in and the changes.
Just after 10am and no one being there, I started to walk towards the Botanic Gardens. My phone rang and Colleen, who I wasn't expecting, had turned up on the corner. We waved at each other from a couple of blocks away.... wonder how many thought we were waving at them lol.
After meeting up with everyone, getting T-shirt, placards, etc we all set off. Colleen and I decided to bring up the rear... really an excuse to talk the whole time. I was proud of myself, as the walk was longer than I expected. We went from the gardens along Albert St, up to the top of the mall, down to the other end, back up to the top to the Albert St exit and back to the gardens.
A short while afterwards, Colleen and I walked back to the mall to have lunch. Boy that walk back, felt twice as long as when we went there lol. Lunch was great, although having had a fill recently, holding a bit of fluid and doing the walk, all contributed to my band being extremely tight. I had food stuck and even having a drink, didn't move it - the drink sat on top backing up - so contributed to a couple of fast trips to the bathroom. Sometimes I really hate the band!
But as normal, I had a fantastic time on the walk and with Colleen (which is always the case).
Saturday - Jamie Oliver! I was up early, hair and makeup done and ready to go. We were told to be there before 12, but when we got there, they didn't want us until then. Firstly we were taken into the old library building. Here we were given our recipe and a sheet of do and donuts. Some photos were taken and just as we finished these, someone came in saying that Peter Fitzsimons wanted his photo with us. I don't think this was true. He came in not looking very impressed, spoke to no one and then pulled up a chair and sat with a sulky look on his face.
One of the Ministry of Food workers came in and told us that we had another 5 mins or so still to go and if we wanted to use to the loo or anything to do it now. Well guess where Kerrie was when they all went out - yep in the loo lol. I made a quick dash out, hoping that no one noticed me, but that all went out the window when Jade calls out (and I am sure egged on by Veronica) 'Oi Mum'. A quick wave then onto business.
Jamie came out and was his usual energizer bunny self. Then instead of the relaxed cooking class I was expecting, it was a rush and catch up with Jamie and me being in a fluster. We cooked Chicken Fajitas, which were beautiful tasting. I do know that at one time he stopped in front of mine and loudly proclaimed "lovely" - which Ryan, who watched it on the net, and Jade, are having so much fun imitating.
When it was over, we got our prize packs, which contained his knife set, an apron and his ministry of food book. All up around $200 worth. We had been told that he would be seeing all the winners when he finished with the public, but that didn't happen. Was a bit disappointing not to meet him and get the book signed.
All in all a great day and was happy to share it with Jade and Veronica and to get to see Beth and Janelle again after so many years.
Here I am going to go back and forth between Thursday and Friday. Some people might find the next bit of writing hard to handle, but this is my life, warts and all. Its about what I am going through. As a person, only a couple of close friends know what I don't want to portray to those that see the 'public' me. You are going to see that me now.
We have been fighting for ages to get help to look after Ryan. Most days I am in pain, although I have had a run of 3 or 4 days with no pain lately. Peter has to do all the heavy caring with Ryan and has to do some things for me as well. I do feeding, moving arms/legs, daytime toileting. I also stay up late and do some rolling, so Peter can sleep but then have to do it when Peter leaves for work on the news agency mornings.
It is all taking its toll on our bodies and our marriage. Ryan knows this, we are very open about everything with him, but he can see for himself. So we have been everywhere asking for help. Some agencies say they will contact you back, but don't.
Anyway last Thursday, we got a call from DSQ. Asking for more information on what we were after etc. He said he would call the next day. He did and came to see us. We told him that as Ryan has been getting worse, we have had less help. I told him about the effects it was having on us all and that I had even had been thinking of relinquishing care. As I said to him, we aren't asking for much - a couple of hours a fortnight to help. He then asked if I wanted him to put in that we were going to relinquish care and I said yes.
He then pulls out our plan with them. There were all these amounts on it for things we haven't been accessing. Money to pay for carers to go out with Ryan - we had been paying for this out of our own pockets - carers approved for 2 hours a night, 4 nights a week by 52 weeks a year. He asked why we weren't using the extra hours that built up when Ryan went into respite. I told him that we knew nothing about any of this. We had always been told we had to stay under budget and everything had been cut back. So it seems that all this time there was extra help there, but we kept getting fobbed off and no one told us.
We ended up, with him saying he would check and make sure that what he told us was correct. I contacted him later on to say that we would hold off on putting in about relinquishing Ryan and see what the outcome is with this other lot of stuff he found and how we coped with it.
On Sunday I received an email from Anna Bligh's offsider. It appears that we were contacted by DSQ due to my email that I sent out to all the pollies asking about their policies for the upcoming election, not because of phone calls and emails I had been sending asking for help.
Got an email today from DSQ saying they couldn't contact our service provider for info that is needed. So fingers crossed that tomorrow we will hear something. Its not easy to say you can't look after your child. But we want the best care for him. Fingers crossed that we can get the extra help we need. As one of our support workers said to me 'why do some get heaps of help and others not enough'. Out of our pockets we pay for a carer to take Ryan out, we also shell out for the overnight care that we get, although at a reduced rate.
Anyway, end of subject for now. Not something I want to dwell on. I will update the outcome to this when it happens.
Sunday - I had said that I would do the Queensland Muscular Dystrophy's walk this year, which kicks off Bow Tie Week. Like normal, when I do these things I automatically enrol the family in as well. Headed off to the city at 9am, to get to the corner of Elizabeth and Edward to meet some friends. While waiting, I took advantage of the time to take photos of buildings I use to work in and the changes.
Just after 10am and no one being there, I started to walk towards the Botanic Gardens. My phone rang and Colleen, who I wasn't expecting, had turned up on the corner. We waved at each other from a couple of blocks away.... wonder how many thought we were waving at them lol.
After meeting up with everyone, getting T-shirt, placards, etc we all set off. Colleen and I decided to bring up the rear... really an excuse to talk the whole time. I was proud of myself, as the walk was longer than I expected. We went from the gardens along Albert St, up to the top of the mall, down to the other end, back up to the top to the Albert St exit and back to the gardens.
A short while afterwards, Colleen and I walked back to the mall to have lunch. Boy that walk back, felt twice as long as when we went there lol. Lunch was great, although having had a fill recently, holding a bit of fluid and doing the walk, all contributed to my band being extremely tight. I had food stuck and even having a drink, didn't move it - the drink sat on top backing up - so contributed to a couple of fast trips to the bathroom. Sometimes I really hate the band!
But as normal, I had a fantastic time on the walk and with Colleen (which is always the case).
Saturday - Jamie Oliver! I was up early, hair and makeup done and ready to go. We were told to be there before 12, but when we got there, they didn't want us until then. Firstly we were taken into the old library building. Here we were given our recipe and a sheet of do and donuts. Some photos were taken and just as we finished these, someone came in saying that Peter Fitzsimons wanted his photo with us. I don't think this was true. He came in not looking very impressed, spoke to no one and then pulled up a chair and sat with a sulky look on his face.
One of the Ministry of Food workers came in and told us that we had another 5 mins or so still to go and if we wanted to use to the loo or anything to do it now. Well guess where Kerrie was when they all went out - yep in the loo lol. I made a quick dash out, hoping that no one noticed me, but that all went out the window when Jade calls out (and I am sure egged on by Veronica) 'Oi Mum'. A quick wave then onto business.
Jamie came out and was his usual energizer bunny self. Then instead of the relaxed cooking class I was expecting, it was a rush and catch up with Jamie and me being in a fluster. We cooked Chicken Fajitas, which were beautiful tasting. I do know that at one time he stopped in front of mine and loudly proclaimed "lovely" - which Ryan, who watched it on the net, and Jade, are having so much fun imitating.
When it was over, we got our prize packs, which contained his knife set, an apron and his ministry of food book. All up around $200 worth. We had been told that he would be seeing all the winners when he finished with the public, but that didn't happen. Was a bit disappointing not to meet him and get the book signed.
All in all a great day and was happy to share it with Jade and Veronica and to get to see Beth and Janelle again after so many years.
Here I am going to go back and forth between Thursday and Friday. Some people might find the next bit of writing hard to handle, but this is my life, warts and all. Its about what I am going through. As a person, only a couple of close friends know what I don't want to portray to those that see the 'public' me. You are going to see that me now.
We have been fighting for ages to get help to look after Ryan. Most days I am in pain, although I have had a run of 3 or 4 days with no pain lately. Peter has to do all the heavy caring with Ryan and has to do some things for me as well. I do feeding, moving arms/legs, daytime toileting. I also stay up late and do some rolling, so Peter can sleep but then have to do it when Peter leaves for work on the news agency mornings.
It is all taking its toll on our bodies and our marriage. Ryan knows this, we are very open about everything with him, but he can see for himself. So we have been everywhere asking for help. Some agencies say they will contact you back, but don't.
Anyway last Thursday, we got a call from DSQ. Asking for more information on what we were after etc. He said he would call the next day. He did and came to see us. We told him that as Ryan has been getting worse, we have had less help. I told him about the effects it was having on us all and that I had even had been thinking of relinquishing care. As I said to him, we aren't asking for much - a couple of hours a fortnight to help. He then asked if I wanted him to put in that we were going to relinquish care and I said yes.
He then pulls out our plan with them. There were all these amounts on it for things we haven't been accessing. Money to pay for carers to go out with Ryan - we had been paying for this out of our own pockets - carers approved for 2 hours a night, 4 nights a week by 52 weeks a year. He asked why we weren't using the extra hours that built up when Ryan went into respite. I told him that we knew nothing about any of this. We had always been told we had to stay under budget and everything had been cut back. So it seems that all this time there was extra help there, but we kept getting fobbed off and no one told us.
We ended up, with him saying he would check and make sure that what he told us was correct. I contacted him later on to say that we would hold off on putting in about relinquishing Ryan and see what the outcome is with this other lot of stuff he found and how we coped with it.
On Sunday I received an email from Anna Bligh's offsider. It appears that we were contacted by DSQ due to my email that I sent out to all the pollies asking about their policies for the upcoming election, not because of phone calls and emails I had been sending asking for help.
Got an email today from DSQ saying they couldn't contact our service provider for info that is needed. So fingers crossed that tomorrow we will hear something. Its not easy to say you can't look after your child. But we want the best care for him. Fingers crossed that we can get the extra help we need. As one of our support workers said to me 'why do some get heaps of help and others not enough'. Out of our pockets we pay for a carer to take Ryan out, we also shell out for the overnight care that we get, although at a reduced rate.
Anyway, end of subject for now. Not something I want to dwell on. I will update the outcome to this when it happens.
Sunday, 4 March 2012
Update of 50 things for 50 years.
1. Read
3. Go on a holiday, hopefully to Melbourne. I was last there in 1984, so just a few years ago lol
4. Go to a horse 'cup' day
5. Go down another 20kgs
6. Get a lot more writing from my autobiography done - Been doing heaps of that
7. Have lunch or dinner at Bretts wharf or Aria Brisbane
8. Go through the glow worm caves at Springbrook hopefully when the glow fungi is out as well or the fireflies
10. Have a tarot reading
11. Go to a musical (booked for Jersey Boys in July)
13. Go on a cruise - booked and leaving in April
14. Get a fish - either fighter or gold fish or two. When I was single I had 2 goldfish, 1 black and 1 gold called Abraham and Lincoln lol (Ryan is giving me this for Mother's Day)
15. Go to a zoo
16. Go to brisbane city markets
17. Brisbane's koala and river cruise
18. Toowoomba carnival of flowers
19. Attend a dawn service
20. Go to Q1 lookout
21. Have a flying lesson - Changing this to do the flight stimulation first, then maybe a flying lesson
22. crystal castle at mullumbimby
23. do a cross stitch
26. try a new food Tried dragon fruit and poppadoms and some vegetarian dishes so far.
28. be part of a flash mob - now where does someone find these people
29. Drive a convertible with the top down and music blaring.
30. Get family tree in order - got heaps of this done
31. Go on a retreat
32.
33. Play blackjack at the casino - must remember to take extra shirt to lose since I have never played it lol
34. Swim in the ocean - haven't done this for many many years
35. Go to an opera or listen or an opera singer - don't know if I could sit through a whole opera.
36. Spend a night at maleny/montville
37. Hold a snake - to overcome a fear (Went on the Brisbane wheel to overcome fear of heights but had to get off, so only went around once. Never again lol )
38. Attend the good food festival
39. feed the homeless - was looking into this a couple of months ago but didn't do anything about it. (contacted agencies but none have gotten back to me yet)
40. do a belly dancing class - well I have enough belly to wobble haha
41. try a new drink
42. queen mary falls walk
43. drink a cocktail - last cocktail was in about 1979 and it was a fluffy duck and its the only one I have ever tasted.
44. host a murder mystery dinner party - have the game here, now to organize
45. Put $5 a day into money box - use it for something special at the end of the year. - been doing this
46. Have a games night with friends
47. Put $50 on black at the casino for my first and only bet at the table.
48. Trike ride from Gold Coast to Mt Tamborine wineries
49. Ride on a carousel
50. Have a kick arse birthday party (venue, dj, food sorted. Decorations started)
Thursday, 1 March 2012
Replies to email
I had put up a copy of an email that I had sent to those running in the state government elections. So far only one has replied. Am thinking that they don't have anything in this election to offer carers, or maybe I have read it wrong.
Thank you Mrs Czernia for your email
I have made some enquiries to ensure that I provided as much info as possible.
As you may know:
· Carers Queensland
· Additional funding of $1.21 million per annum was committed to eight organisations in 2010-11 to provide regional counselling, support and information services for carers. $534,000 of this funding was allocated to Carers Queensland.
· In 2011-12, $4.2 million is provided to 22 respite service providers across 25 locations to provide respite to older parent carers and assist with transition planning. Respite provided by this initiative includes in-home support, centre-based respite and community-based support. In some locations, emergency respite and other flexible respite options are available
· As of February 2012, a total of 113 people with older carers have transitioned to a place of their own under the Disability Assistance Packages since July 2010.
The Queensland Government is committed to recognising and supporting carers, with the following initiatives introduced to support carers in their caring role:
· the Carers (Recognition) Act 2008 (Carers Act) (PDF) recognises the valuable contribution carers make to the people they care for and the social and economic benefit carers provide to the community. The Act sets out requirements for public authorities to recognise and support carers through services to carers and the people they care for, and also for employees of public authorities who undertake a caring role, specifically through:
· the Carers Charter (PDF, 344 KB) Carers Charter (RTF, 12 KB), which contains 13 principles recognising the significant contribution carers make to the community
· the establishment of the Queensland Carers Advisory Council, which advises the Minister on matters relating to carers and works to advance carers’ interests. The Council has 12 members: four carers, one of whom must be a grandparent carer; three carer association representatives; one member who represents grandparent carers; and four public servants. A Council Communique (PDF, 134 KB) (RTF, 70 KB) is produced and available on the website following each meeting.
· The Carer Business Discount Card is a concession card that provides eligible carers with discounts on goods and services from participating businesses. This scheme is a partnership between the state government and businesses across Queensland
· The Companion Card promotes fair ticketing for people with a disability who need significant assistance from a companion to attend activities and venues in their community. This card will enable people with a disability to have the same opportunities for participation and recreation as other community members.
· The Office for Carers is Queensland
· The Queensland Government Carer Action Plan 2011–2014 is another important mechanism to support carers. It builds on the report Review of the Queensland Carer Action Plan 2006-10 (PDF, 163 KB) (RTF, 336 KB) which outlines the progress achieved through the Queensland Government Carer Action Plan 2006–2010 (PDF, 271 KB) Carer Action Plan 2006–2010 (RTF, 55 KB). To order a printed copy of the Carer Action Plan, call the Office for Carers on 1800 177 120 (toll-free within Australia
For the first time, Australia
I know how difficult things can be in this regard and as such I hope that this information is of use to you?
Thank you for raising this matter with me.
Wednesday, 29 February 2012
Our adventure and how we turned into burglers
Knowing Ipswich was about to flood and anticipating a shortage of basic food, we made sure we stocked up just in case we couldn't get out. Also thinking we might lose power for a short while at some stage I boiled the jug, filled the thermos and we had the candles ready. Most of this was done by Monday evening.
Now you think your prepared but suddenly Tuesday we realized I had forgotten medication. Racing out and trying to find a chemist open which we luckily did after visiting about 4 of them. This was around 3pm.
That night at around 9 the power went out. Our neighbours still had theirs, as they are on a different grid to us. By morning they were also out. We have a small generator for times like this to get Ryan's ventilator going, so that was all good.
The next morning we got a radio going.... tip for people if you need D size batteries and don't have any, you can get 2 A size and wrap masking tape around them and they will work instead ( might have to start up a handy hints show lol ). All the men, as they do, convened out on the road to talk over the latest events. Noticably absent was our neighbours. A call to them and they had gotten trapped at their rental they are doing up. We asked if we could borrow their generator since it was bigger than ours and might run the fridge. "Yep no use to us".
We got the generator and put it on our fridge for a while, then it went to the other neighbours, then up the road to Peter's boss. The whole neighbourhood was sharing generators between 3 or 4 families. I have never seen our street so busy with foot traffic haha.
Our neighbour was worried about her cat and asked for us to go and buy some food to feed it. That wasn't happening as all shops had closed and weren't reopening any time soon. So the cat was going to get my John West tuna (yes Leanne I was going to feed it, not kill it or feed it to spanner lol ).
That morning when I had rung the electric company they said power would be on by 6am thursday. At lunch time it had gone to 3pm Friday, then 5pm Friday, then 5pm Monday. So everyone started getting desperate to save their food.
Unforunately the generator just able to keep things cold. So then it was everyone trying to share what they had before it went off.
Troy and I went and took some of the pics I put up and found a way out of our area - although we still couldn't go that far. Petrol stations had run out of petrol and ice, it wasn't until Thursday we could get some when the roads opened up a bit after the major flooding.
As soon as we could get out we went to Peter's mums and had a shower and washed hair haha. The simple things were what we wanted. We charged our mobiles - not that it was much use then as we didn't really get service until Friday due to dropping in and out and us having no home phone service.
Floods bring out good and bad in people. A lot of people were stranded at our local shops unable to get home. They were sleeping in their cars. When hubby went up early wednesday morning he offered for those there to come back to our place. They decided not to but went to the evacuation centre, which had power. But when saying to a person in the area about it, their reply was "but they would eat your food". I'm sorry but I don't get this attitude. I also don't get how some shop keepers could charge $10 for a loaf of bread or $20 for milk. This was on the radio with people complaining about the costs.
Thankfully the good override the bad though. We had lots of laughs, wine and bbq's with neighbours. Shock at friends who have lost everything as their houses went completely under in Karalee. Its as Ryan said, we have food, our home and each other. A lot more than some have. He said it was like camping at home lol.
Oh now if your wondering how we became burglers. Our neighbours still can't get home. Feeding the cat, hubby noticed the liquids coming from the fridge due to food rotting and the smell. Knowing we had to get in, we found a way to break in and clean out their fridges, freezers etc. When I rang and told them they were so grateful. It was the one thing they were dreading as a friend of theirs had gone home to find maggots everywhere. The relief in their voices was so worth break and enter lol.
For now Black Hawkes flew in a big generator for our area, which hopefully will last until they can fix the problem with the transformer. Until it is though, we won't be buying any food to stock up the fridge and freezer.
Unforunately Jade's work went right under water and until they can get it up and running again she is out of a job. The agency Troy has his appreniceship through is also flooded and not working for a while yet. Thankfully the government has set up help for them and those like them.
Do you remember when ...
I not only remember when people did not have mobile phones but also when hardly anyone had a home phone - you used the phone box to ring the luckly ones that did - and I even remember using phones that you wound the handle and spoke to an operator. :o
I remember black and white tv. Saturday nights were spent watching Walt Disney welcoming you and seeing innocent family movies. Sunday nights was watching Molly Meldrum and countdown so you could talk about it at school the following day. Tammy, Gidget and Doris Day were our 'role models' on tv. Who could forget the Leyland Brothers followed by Alby Mangles in later years. TV usually closed down around 11 and the Queens Christmas message would stop a nation.
The cinema showed shows like World Safari, and a trip there with school would mean watching Lord of the flies not Harry Potter. Your price also included 2 movies not 1. There were Jaffas to roll down the isle or throw over the balcony. Then came Rocky Horror, Rocky Balboa and Aliens.
Drive ins were everywhere and you could smuggle your friends in by putting them in the boot. Choc topped icecreams were the go and mattresses in the back of panel vans were the go.
10 cents worth of lollies was more than 1 lolly, hell it was more than 10 lollies. You got free milk at school. The majority, not the minority of mothers helped at the school tuckshop. Working b's meant parents turned up to help.
Teachers smoked in the classroom, teenagers smoked in the cinema, in fact people smoked everywhere.
All kids would go out playing and come home when hungry and before dark. We would go bike riding, horse riding, yabbying, swimming and just general play. The baker, milko, fruitman and softdrink man all came to your house.
I remember ipods, cd's, cassettes, 45's, 33's and even 78's. Dvd's, tapes, and when your choice was Beta or VHS.
The ensuite, the bathroom with separate toilet, the flushing toilet in a room on the verandah, the outhouse.
Milk in bottles with silver foil lids, real cream milk that you had to shake to mix before drinking. Milk in metal buckets or in the tins at the end of driveways waiting for the factory to collect it.
Everyone played sport, everyone had a veggie garden and every child walked or got the bus to school.
I have lived through flares, ponchos, tartan, cheesecloth, taffetta, long boots, short boots, riding boots, jesus sandals, joggers, sandshoes, stillettos, ballet shoes, thongs, minis, maxis, big hair, permed hair, short hair, straight hair and most have returned at some stage or another.
Everyone older was Mr or Mrs or Aunt or Uncle. Every suburb had a least 1 corner store, service station, phone box and mail box.
Stores closed at midday Saturday and didn't open again until Monday. Nothing was opened on Good Friday or Christmas day.
Trains use to have red carriages that had doors to benches that faced each other with just enough room for someone to stand on your feet in the middle at peak hour. You had nothing to hold on to and would constantly fall onto the lucky person to get a seat.
Dual lanes on the highway was when you indicated and overtook the person going slow in front of you.
There is so much more and so many memories.
A challenge for those strong enough to try.
Just moving some of the stuff from facebook to here that I have written.
Yesterday I had a phone call from a mum who had 2 boys with Duchenne Muscular Dystrophy - the same as Ryan. Her boys passed away over 20 years ago. We were talking about how some things hadn't changed in all this time. One of these things was understanding. How people don't seem to understand what it is like to look after someone with a physical disability.
Now this got me thinking and apart from me putting here what I do as a carer, I could get some of you to do something that Ryan's primary school use to get the kids to do.
Do this when there are 2 of you around and you can even swap roles at a later date. Now the only movement you have in your body is your hands... not your arms, just the wrists down. You can't even move your neck... but your mouth works fine. Now I can see you’re wanting to type a reply to me. You can, you just have to use the onscreen keyboard with your mouse. Don't have a mouse?? Well tough you can't reply then.
Now the other person that is there has to help you. Your leg is itchy or there is a fly on your nose - they have to scratch the spot with only you telling them exactly where it is, or they have to stay around shooing the fly away.
Your thirsty and hungry - they have to get you a drink and give it to you.... use a straw otherwise it will go all over you when they tip it. They have to cut your food, listen to you tell them how you want it and what order and when you’re ready for you next bite. Now let’s hope they get all the crumbs off of you and especially that one that went down your top and is annoying the hell out of you.
Your arm is uncomfortable where it is, get them to move it back, out, over so it’s in a better position for you. I hope you haven't moved your legs yet, because where they are is where they are staying until someone helps you to shift them. And it better not be hot where you are. It is getting them to lean you forward so they can fan your top so it stops sticking to your body.
Oh look there is a message on your phone... hold on, you can't look at it. You need someone to get your phone, hold it up in front of you so that you can read it. The same if you want to view a paper or book - someone has to hold it up for you and turn the pages. Hate what’s on TV or the radio atm, tough!! Unless someone comes to change it, it’s stuck there.
Want to go to the toilet? Don't ever leave it until the last moment or try hanging on. You have to allow time to call out to someone and them to come, get bottle or hoist (depending on what you’re doing), move/remove clothing then you and go. Same with shower. You will get hoisted onto bed, clothing removed and then transferred to shower chair, wheeled in, washed by someone else, dried, hoisted back to bed to get dressed. If you then stay in bed you can't move. You have to get the other person to move your arms, legs, head etc to a comfy position. Then if you want to roll onto your side or back, you have to get them to do that as well.
When going out you have to have someone with you all the time. You would never want to have any issues with privacy, because whoever is with you is going to know your pin number because you can't key it in and it’s ok to say you will use cash, but how are you going to get it without someone to do that for you either.
Now if you can do even some of this with another person for an hour or 2, I can almost guarantee that by the end of that time you will have yelled at them for not moving something right or not being quick enough. But chances are you moved to do it yourself or show them and this isn't an option for someone with a physical disability.
Then if you really want to get a good handle on things, set your alarm for every hour. Hop out of bed and walk to your spare bedroom or kid’s bedroom and then back to bed. That’s 1 night, try and see how many nights in a row you can go and still function the next day.
Everything you do and every move you make during the day and night is something that Ryan and boys like him can't do. Everything you do and every move you make during the day and night is something that parents/carers have to do for them as well as their own movements and activities.
Physical disability does not mean intellectual disability.
Another thing I would like to add - If you see me (or any other parent/carer) and I am grumpy or unsociable. Its not because of something you've done. Its more likely that I am tired or worn out. I normally have 1 day a week when Ryan goes out or weekends and I can do things on that day which normally include such things as hairdressers, donating blood, catching up with friends, drs apts etc. Every time he goes into respite I end up spending the week doing the things I can't get done in that one day instead of resting. Peter is fantastic and helps heaps but also has his jobs to do, so can't be here all the time.
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