From slow to go

Have had a very full and fun-filled couple of weeks.
Last week Ryan was in respite, so this saw me go out on Wednesday night with Colleen to a theatre restaurant. Saw a great show called Ghouls night out. As always with her, we had lots of laughter and even more talking.

I am trying to talk Colleen and another friend Jan into coming on a road trip to Melbourne in a motor home with me. I think I might be slowly wearing them down haha.

The next day Peter went in for some tests. Still don't have the results from that yet. Fingers crossed its all fine. While he was there I went shopping and ran into an old friend that I haven't seen for years. She came over the following day for lunch.

That Thursday night I got to cross another item off my list. Peter, Troy, Danielle and I went to the Comedy Club for dinner and the show. Very funny comedians and lovely food.

Out again on the Friday night for dinner with Ryan and Peter and I was going to sleep at the table.

Saturday off to the doctors as I have a touch of cellulitist in my leg. Antibiotics which I am still on and another trip back today and hopefully it will clear up soon.

Another item off my list on Wednesday, when Jade and I went to aqua aerobics. I had so much fun at it, that I went again today. Am going to try and go a couple of times a week, to the early morning class or Monday's lunch time when Ryan is doing his study with his carer.

Speaking of Ryan, he had lung and heart specialists in the last week and both have given good reports. He met his new carer and as of Monday will have 4 hours with him and will do his photography course.

I need to make sure I take photos of everything I do this year, as I am thinking of doing a book up of the  items I cross of my list and memories.

Well this week coming I plan to get some stuff listed for sale on the net and next weekend I am also doing a cheese making class with Jan. Can't wait to catch up with the girls from school on Sunday for lunch.

hmmmm just noticed that one of our family of three geckos that live on the outside of our front window at night, is now on the lounge room wall. Have to go and get Peter to remove it.

Until next time :)

1. Read 50 39 books in the year. Doesn't matter what type but as long as its 50 and I will be able to keep track with my new kindle.
2. Do another cooking class. At least 1 but hopefully 2. So far done 3, one of which was with Jamie Oliver
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 (gotten a bit stuck at the moment)
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
9. Do a charity event - with not a lot of walking done today MDAQ walk
10. Have a tarot reading - have the name of someone really good in Fernvale
11. Go to a musical (booked for Jersey Boys in July)
12. Go to gold class movie
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
24. have a facial Have had a couple now 
25. have a massage Have had two of these so far, one being a hot rocks one
26. try a new food Tried dragon fruit and poppadoms and some vegetarian dishes so far.
27. aqua aerobics classes.  Done and going to do more
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. Go to the comedy club 
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) 

Help Finally!!!

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.

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.

Update of 50 things for 50 years.

Updating my list

1. Read 50 40 books in the year. Doesn't matter what type but as long as its 50 and I will be able to keep track with my new kindle.
2. Do another cooking class. At least 1 but hopefully 2. So far done 3, one of which was with Jamie Oliver
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
9. Do a charity event - with not a lot of walking done today MDAQ walk
10. Have a tarot reading
11. Go to a musical (booked for Jersey Boys in July)
12. Go to gold class movie
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
24. have a facial Have had a couple now 
25. have a massage Have had two of these so far, one being a hot rocks one
26. try a new food Tried dragon fruit and poppadoms and some vegetarian dishes so far.
27. aqua aerobics classes.  Done and going to do more
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. Go to the comedy club 
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) 

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 received $2.492 million in 2010-11 to provide counselling, support and advocacy services to carers of home and community care clients. It also provides education, information and training about carers’ needs for Home and Community Care service providers.

·        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.

http://www.communities.qld.gov.au/disability/support-and-services/carers/support-for-carers)

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’s main government contact point for carers' issues. The Office actively engages with other government departments, non-government organisations and the community to raise awareness about carers and embed Carers Charter principles in government and community activity. It also provides secretariat support to the Queensland Carers Advisory Council.

·        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) or email: officeforcarers@disability.qld.gov.au.

For the first time, Australia has a National Carer Strategy—the second element of the Australian Government’s National Carer Recognition Framework. The National Carer Strategy strengthens the Queensland Government’s commitment to recognise and respond to the needs of carers; and to support carers having rights, choices, opportunities and capabilities to participate in economic, social and community life. The priority areas in the Queensland Carer Action Plan 2011-14 align with the National Carer Strategy.

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.