Australia Day

Its not Australia Day yet but Merv has gone off to his day centre in full Aussie outfit.  The T shirt (of course), a silly hat and a flag.  Around Australia families and groups who don't meet on Tuesday 26th January have been celebrating.  The sausages sizzle on the barbie, damper is cooked and the beer (or wine) is flowing.  A bit of slip, slop, slap to prevent sunburn and a dab of insect repellant to ward off the 20,000 flies ready to attack!
Today the nice bloke from the day centre who brings their wheelchair to our front door (which now sports a very un-sporty ramp) said he is cooking the barbie today. He asked if Merv could dine on a snag.  No, was the answer, no snags.  Hmm he said and offered to cook Merv a bit of fish on the barbie.  Thumbs up.
Perth has the most wonderful skyworks on Australia Day.  It is amazing. It only lasts for thirty minutes but viewed from either Kings Park or the foreshore it is always spectacular.  Not so many years ago we would catch the train and make our way to a vantage point.  With a rug on the grass and a picnic tea we were set to enjoy the spectacle.  One year I even clinched well paid work for a private event on the foreshore.  I was an overnight waitress and bartender.  All the guests stopped as the firework display erupted and we also enjoyed it from our waterfront vantage point.
When the kids were just teenagers we parked our car right outside Kings Park early in the morning and spent the day in Fremantle before returning to Kings Park.  It was a great idea not having to walk too far to the car but the downside was we had a terrible time pulling out into a steady stream of bumper to bumper traffic.  Sometimes ideas sound better than they actually are!
Perth skyworks have become a Perth party with families and friends capturing early vantage spots and entertaining themselves until 3pm when air displays and other entertainment kicks in.
Merv asked me this morning if we were going.  I would like to but I don't suppose we will.  Now that Merv is in a wheelchair for all outdoor activities it is just a little harder and requires more planning and energy!
I have thought during the year of booking a hotel in Perth for the night, taking a boat or finding a not so good vantage spot closer to home.  The hotel is definitely out as well as the boat;  not that I looked!  The third option is better than none. The last two years we stayed home and watched the Australian Open!  Of course I can tape it if we want. 
Well time to check out possibilities to spend an evening enjoying what Perth does best.  Happy Australia Day....

Grump, Grump New Year

Well it happened.  2015 has gone and 2016 is here.  I'm told that's a good thing.  Lots of things ahead full of hope, joy, health (what?) etc etc.
Hmm,  a bit like Santa himself, all fur and speculation!   Yes I am getting cynical, but 2016 does promise some good things:

• Dustin and Grace celebrate their first wedding anniversary (hurray)
• They are celebrating paying off debts and saving for a house
• Grace will get her driver's license this year, she goes for her test this month
• Mel is losing weight at incredible speed, almost 13 kilos lost and only 11 kilos to go before goal weight of 65 kgs and a trip to Paris to celebrate!
• Added bonus of Mel's weight loss is improved health both physically and mentally
• Merv, Mel and I are planning a 3 day escape to Mandurah in early March
• Mel and I will have a 5 day holiday in Busselton during early April while Merv is in respite.  We will catch the train/coach and spend our time walking and being active
• I hope to resurrect my very sad garden this year, I have plans...
• Merv is watching his beloved Hopman Cup and this month there is also the Australian Open.
• Merv will continue with his physio program at home and he will be well looked after by me, family and community services.

Merv's physio sent us an email before Christmas.  It spoke about Merv's program and how he will see improvement.  I wondered what she knows about Huntington's Disease.  There is no cure, it is progressive and often in bursts.  The last six months have been very difficult for us both living with his declining health.  Sometimes you have to call a spade a spade and not dilly-dally around.  His mobility is never going to improve. 

I have a friend in our carer's group who said what all of us say: "When someone asks how Gerald is I tell them he is well."  I agree, no one wants to know that Merv's mobility is shot, that his response time is limited, sometimes I spoon feed him, we use his wheelchair much more than before, that I wipe his butt for him and we hardly go out because it's all just too hard.  I talk to him but at times it is like talking to a wall, there is no response. Yes, 'He's fine' hides a multiple of sins.

I am a prisoner of my doing but I know no other way.  I have almost 3 days a week of respite which I give almost exclusively to Mel.  She may have the HD gene but at this time she talks, she walks, she

thinks and does stuff,  that is all I need to feel like I am a part of the world for at least 3 days out of 7.

Okay, so I'm having a grump, but here I sit wandering what this year will dish us up and what will life be like as the clock ticks over to 2017?  Not a thought to entertain.