Revising My Role

It's been awhile since I began blogging.  It started as a way to share and vent my experiences as a carer.  My husband has Huntington's Disease.  It is a rare disease and progressive.  He will never get better.  My life as a carer is continuously changing.  My emotions don't, they continue to be raw.

There are many things I miss.  I reminisce when Merv would help me with Mel.  He would drive her somewhere she needed to go whether it was an appointment or a social engagement.  He would pop into the shop and buy milk (never bread, as he worked in a bakery!)  He dug holes in the garden under my supervision and did all the hard work in the garden.  He scaled ladders and made jokes.  He made me smile, he made me laugh and we planned our immediate future, for we knew it could stop suddenly and it did.

Life isn't all bad!

I thought only today - if I was in a working environment how would my annual carer appraisal look?  No one appraises me.  The government continues to pay a carer/disability pension to us.  Community services continue to provide services.  There is an annual review of services provided but it's for Merv not for me! 

Friends and relatives continue to state after popping in for a cuppa; "Merv is looking good!"  Sure, he's just sitting there, maybe he adds to the conversation but mostly he's quiet.  They're not there while I'm washing, dressing and grooming him.  They're not there while I'm preparing meals, doing the washing and sorting the budget.  I'm a one man band. 

They don't drive him anywhere or deal with pushing his wheelchair.  They don't stay home at night every night and most days like we do because it just gets too hard and it's easier not to go out.  I talk to Merv about everyday things including the kids.  He doesn't answer me, so I just rattle on for there is no one else to talk to. 

At least when he has his iPad blaring with his favourite tunes he sings along keeping himself busy while I'm hanging out washing, stacking the dishwasher and wondering when I can set him up in front of the TV so I can walk down the shops as we have ran out of milk today.

I miss working.  It was structured.  I had a time to begin and a time to stop.  I didn't really care if I stopped for lunch and the work was interesting because it was about people I didn't take home with me!

I don't ask anyone to assess my work as Merv's primary carer.  I know I'm doing a good job because he tells me almost every day that he loves me.  It is enough to get me out of bed each morning and start the day afresh.

Celebrating Father's Day this month