Guilty Holiday

Merv has a great life except that he has Huntington's.  He sits around all day watching TV,  playing games and listening to his iPad with a constant buzz around him.  He is washed, dressed and pampered while all around there is a hive of activity.  He just sits and smiles while listening to his head-banging music of the 60's and 70's.  I even made a new playlist of his songs.  What I consider; 'nice easy listening songs' and I titled it, wait for it, yes,  'Happy Wife'.
I shouldn't feel guilty but I often do.  To ease this guilt I booked a four night holiday in the town of Mandurah.  I booked it for Merv.  When was the last time he enjoyed a holiday, which wasn't respite?Mandurah was once a sleepy holiday hollow of beach shacks one and a half hours travel time south of Perth.  Nowadays with a mostly efficient freeway it is reduced to an hour and the town is more a bustling city with expensive homes and the occasional out of place beach shack.
Near the marina is a collection of chalets where we have booked a disability unit.  We have stayed there several times before.  It is close to everything and a pleasant stroll with Merv's wheelchair to local attractions and shops.  Even the fish and chip shops are close by much to Merv's delight!
I asked Merv what he would like to do while in Mandurah.  I imagined he would ask about the Pinjarra historical area where he can indulge in fresh scones and cream.  I wondered if he would chat about the Peel Zoo where we went several years before. 
He answered he wanted to go to the movies.  "Oh,"  I said.  There are plenty of cinemas close to our home but he wants to go to the movies while away.  So it will be.
I am looking forward to seeing my sister Maureen as she lives in a community close by.  There is a free community concert one evening on the lawn adjacent to our chalet.  Hopefully no head-banging stuff.  I envisage myself lazing in my outdoor chair, sipping on a nice glass of wine while being wooed by the strains of music from the stage.  In reality I'm sure its alcohol free but there's nothing like a day dream!
Dustin and Grace are staying in their own booked unit for a couple of nights.  Dustin is taking the outdoor chairs for the concert in his boot.  My little Hyundai will be filled with the wheelchair, bags of clothes and small eskies filled with delectable delights of the palate.  Other household bits and pieces will be crammed in places you wouldn't expect and may not be found for several days after they are needed!
I will suggest the Pinjarra scones and cream and the Peel zoo.  Most of all I look forward to walking along the estuary enjoying the view and breathing in the sea air. Mel more than anyone loves spotting the pelicans on the water or flying high above.
Whatever we do will be just fine.  I hope the weather is kind, not too hot.  Anything around 30c will be appreciated and no rain please.  My link with the good Lord above isn't always reliable.
Even guilt can be a good thing.  A four day holiday with fresh sea air.  It sounds good to me.

Pelicans are often seen in Mandurah estuary

Respite in Waiting

Its been far too long since I enjoyed respite.  Memories of my month away in England last July are becoming decidedly blurry!  The 304 km walk, was it really a holiday?  Maybe not but it was all in all still respite.  No need to shower Merv daily at 4pm and arriving home three times a week in time for the support worker to leave.  Yes it was still respite.  My five day holiday in Bath (where the Roman's built their hot spring baths) was wonderful.  I enjoyed every moment of my freedom.
I normally have four weeks respite a year.  The first fortnight includes the three night, four day HD Carer's Retreat and then thereafter whatever I have planned.  The second respite is usually booked around October.  In the past it has included oversees adventures or a train trip to Darwin plus a few days enjoying the sun.
Nothing is simple in this world!  Funding which came from Commonwealth Carelink is now dependent on NDIS (a new government disability insurance fund) which funds Merv's community services providing the funding for his April respite.  If not the bill for his respite is over $700 and I haven't budgeted for it as yet.
So far nothing is booked for October this year.  Still waiting to see what will happen with Mel's weight.  Will we be jetting off to Paris or not?  Who knows.  The weight loss is getting more difficult and the more we both stress the more I realise my respite is urgently needed!
In April the annual HD Carer's Retreat happens but it is booked in chalets only three minutes from my house and a holiday doesn't seem like a holiday when its on your doorstep! The day after it finishes  Mel and I are heading by train to Busselton for five wonderful days.  No car, just walking and enjoying life.  Busselton is a laid back beach town 220 kms south of Perth.   I have been there over one hundred times but its a great place to swim, walk and just relax.
Altogether I will have a fortnight of respite.  There is multitude of things still to do at home, including sandpapering peeling paint.  I look at it and consider my options.  I will decide whether to get inspired with paintbrushes and sandpaper closer to the time.  I know if I get it done, done it will be and no longer an eyesore.  Yes I push the thought aside, there is the garden to consider and a whole range of other options. 
I would like to go to the movies and sit right at the back.  I imagine myself climbing every step to the top.  When I take Merv to the movies we take his wheelchair and we take the seats for those with wheelchairs or mobility issues.  I want to feel just like everyone else, even if its just for a short while.  I want to go into the city and see the new Elizabeth Quay everyone is raving about but I will find out if its wheelchair friendly so I can later take Merv there.
My life is about finding out what is and what is not wheelchair accessible.  This Sunday for Valentine's Day Merv and I will go to Sorrento Quay up the coast a bit.  We will take Merv's wheelchair and enjoy morning tea in the Dome Café which overlooks the crowded marina.  Merv will enjoy his apple pie and cream and later we will share fish and chips together and a walk around the quay before heading home.  No cards or chocolate this year.  Maybe he will say Happy Valentine's to me.  Maybe he won't, but we will have a nice time getting out of the house.
Respite is still a few month's off and I wait in anticipation....

 Busselton by the sea