Saturday, 2 January 2016

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.


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