What Time?

A lot of my friends said, "What will you do with all the extra time you have now Merv is in care?"  It's a lot like the person who retires because they have no time for themselves outside their work, but they just get busier in retirement doing everything else!
I thought I may have extra time and in many ways I do.  I now walk with my sister before the sunrises a few mornings a week to help in our fitness journey.  I attend the local gardening club and a ladies do it yourself meeting once a month.
Yes I do things which before I didn't have the time or I was just unavailable at the time these things happened.  I no longer have to rush home because it's almost time for the support worker to go home.  Yes that is freedom.
On the other hand I visit Merv everyday because he is unable to do even the basic things for himself. Things as simple as turning on his TV and selecting a suitable channel.  Last week we had Foxtel Sport connected in his room.  Whether it's me or a staff member someone has to turn it on.
Some days I arrive and he's staring at a blank screen or he's wearing a short sleeve T shirt when he needs something warmer.  He's sometimes unshaved.  This morning his teeth hadn't been brushed.  I did it.
I wonder if life will ever be easier.  I fear not.
Just as we were getting on top of these many smaller issues, or at least accepting the complacency Merv experienced extreme body movements for several days last week.  Merv told everyone it's his disease (Huntington's), his specialist said otherwise.  I threw up my hands in despair. Merv was so restless he was put into his bed after breakfast for his own safety.  With a slight increase in medication he appears to be much better.  Will it happen again?  If so, when and for how long?  In reality we're just taking one day at a time and adding a dash of hope.

Escape to the Shopping Centre

Our local shopping centre was once the hub of excitement but just like our houses they become dated and dreary.  Before we moved into our new home the local shopping centre was immersed in their refurbishment.  There were only seven shops open and no parking.  I shopped elsewhere.
Last July they promoted the opening of  eighty new shops.  I made sure I was there!
When all else is going pear shaped in life a shopping spree or even a browse is pure escapism.  I indulged regularly and I have no regrets.
Merv going into permanent care has opened up a window of free time each morning.  Last Thursday I took the opportunity to attend the grand opening of our new shopping centre.  Even the TV Morning Show were there.  Before 8am the place was crowded.  I took my place in the queue outside department store David Jones and gratefully accepted a hot cross bun offered to those in the line up. Breakfast... yes I had forgotten my morning routine.  I was too late for the free shop bag but I didn't care.  After the official ribbon cutting I wandered around David Jones and made a purchase.  I'll be back for more I thought.  I took time enjoying the H&M stores, the quirky and expensive boutiques.  I bought takeaway coffee from a brand new cafe. They not only had inexperienced staff and new equipment which added to the waiting time.  There were bands playing and dancers entertaining but it was time to leave to visit Merv.  The carpark was full when I headed out.

Later the same day I revisited David Jones enjoying the rambling array of books, the kitchen appliances, and running the tips of my fingers over leather shoes.  I was hooked.  I accepted a glass of champagne and an egg sandwich.  Oh more celebrations in David Jones.

I had a shopping list which included the tried and true range of shops opened months before.  This Sunday I'm taking Mel shopping with me.  There is a fabulous multi coloured coverlet in one Manchester store, a quirky boutique for girls size 12-24 which will leave her wide eyed.  Oh and there is a fabulous book on Sunday readings which I might just stick under my arm and walk over to the sales desk.

Yes escape to the Shopping Centre where I indulge in a little fantasy and forget the reality of life! 

Crowd waiting for the ribbon cutting


My first purchase at David Jones, also first customer


A view of one of the new wings

Free Champagne at David Jones after 5pm

Three Weeks

Just a little more than three weeks since Merv went into the care facility.  Overall I must say I'm happy.  Oh so very relieved to give away the ongoing personal care and toileting issues.  Neither of which I miss!
I miss him being here.  I loved it when he sat comfortably in his reclining lift chair.  Care free watching sport or a favourite movie.  I would sit with him for just a while in between cooking, gardening, cleaning or answering phone calls and emails.
I rarely seem to be at home anymore.  I'm sorting stuff out at the facility!  Today I arrived to find him in the clubhouse after his Physio session wearing his cute little pyjamas!  I was horrified and wheeled him with haste back to his room and promptly changed him into 'blokes clothes.'  So much more like him.  Bedtime should never be showtime, at least not for an 63 year old bald headed bloke!

The manager decided to photograph his pj's to prevent the caseworkers mistaking his night clothes for day ones.  Problem solved.  While that was being solved and Mel was delighting herself playing bingo with Merv in the clubhouse I ran around buying TV number four.  I know no-one who has four TVs in 23 days.  It cost a heap more but if the damn huge button remote doesn't work I know I can buy a Sony big button remote which will work.  Now I have to squeeze it out of the box, attach those damn legs without drinking a glass of wine first then tune the damn thing.  I'll hopefully attempt it before 'wine time.'

Today his new recliner/lift chair is due to be delivered to the care facility.  My phone sits next to me to ensure I don't miss the call.  I hate waiting for the call.  They never call when you want them to.
Next week I have arranged with his community service coordinator to have afternoon visits four times a week.  The girls will play UNO, games, take him for a walk or listen to music.  I imagine I could just lie on my bed with the autumn breeze gently cooling me.  You know of course that is unlikely to happen.  Possibly never.  More likely I'll be having fun at the refurbished shopping centre or gardening, cleaning or cooking.  Oh well.  Mel and I have plans to take a day off and take the train to Perth on just get out on the open road.  It might just take a while yet.

TV 1 -JVC the DVD player didn't work

TV 2 - LG too small

Kmart Big Button Remote

TV 3- Linden cheap won't sync with large remote

TV 4 - here's hoping

A Moment in Time

There are numerous times in my life I remember well.  I know where I was when I heard Elvis had died.  I was holding my baby son of only 4 months.  I couldn't believe it was true.  It was long before social media and we relied on radio announcements and breaking news breaks on TV.   I was driving my Mum home when I heard Princess Di had died from a traffic accident.  I was driving in the northern suburbs when I heard Steve Irwin had died  The same goes for  the deaths of both our parents and my brother's little girl who died at eleven.  I remember each moment in time.   Each was a momentous moment.  Fortunately not all moments in time are death related.
I have dates, places and memories of family celebrations and milestones.  Then there is Thursday 1st March 2018.
Merv was in respite in Bunbury when I received the call from the care facility.  I had filled in the paperwork, taken Merv with me during a walk through in January and now after a six week wait a permanent room was being offered to us.
I had imagined the phone call in my head, playing it out with different scenarios.  I had already bullied myself into politely saying, "Yes."
I listened to the spiel of my caller offering the room and then I said, "YES"
Merv came home last Wednesday afternoon from his nine day respite and spent one night at home before driving him to his new home in the care facility on Thursday 1st March.
Did he fully understand when I explained slowly and carefully what was about to happen?  I hope so but I can't be sure.  So far he has accepted his new home is not the one he moved into twelve months ago; the one I live in, the one he no longer does.
My friends said I should be tearful and I wonder if I am bad because I didn't.  I felt relieve that others will share his care and the responsibility which comes with his declining health.
Yes I was relieved.  It doesn't mean I love him less.

Good News Mel

When times are tough it's good to hear and celebrate good news.  While Merv's health continues to deteriorate, my face grows longer and my heart beats faster. I know it's just a matter of time before a room becomes available in the care facility for him.
Today I took Mel (38) to Perth to Neurosciences to continue in the ENROLL research study.  After endless questions Mel stayed in the room to answer more questions and I was asked to sit in reception and fill in the carer's questionnaire.  I do the same each year.  I wondered if my answers were the same as last year and the year before that.  I feel my toes carefully balanced on a precipice.  Don't lean forward I hear myself shout.
We discussed Mel's mood swings and all the things which have happened in the eleven months since moving house.  I don't feel so bad now.
Finally we are in the room with the head neurologist.  He brings comfort after examining her through a series of questions and movements,  He assures us she is not showing any Huntington's symptoms.
Relieve wraps its comforting arms around me in a persuasive hug.  I am comforted.  Mel is joyful.
It is known to many that Mel moves and shakes, not all the time but when she does she does it with gusto.  Her doctor years ago called me with her concern and asked for me to take her to Neurosciences.  Anxiety, a nervous disposition?  Who knows, who cares?  All I know is she is not currently HD symptomatic.
We rejoice.  Family and friends rejoice with us! We will be back to do the tests next year.  I don't think of next year only this one....

Best Behaviour

It's almost February, not sure what happened to January.  Merv has known for over a month that he will go into permanent care.  After visiting the facility with him four weeks ago I answered every phone call with trepidation.  I thought the call to say they have a room for him would come quickly but it's still an unknown.
I have booked future respite because I just don't know when that dreaded call will come.  I have said to myself I have to say "Yes".
The sad fact being you only secure a room when someone leaves.  They usually leave because they have departed our world.  That is the sad fact of a care facility; it is usually the last port of call before you are called home.  Yes, I know that's just how it is.
Since our tour of the care facility and a nice little chat with the Admissions Officer, Merv has been on his 'best behaviour'.  At least this has made life a little less stressful but there's no backing down now.
Of course it might just be the continuous tennis keeping Merv better mannered!  I suppose we will never know but whatever it is I'm happy for it.
Merv has new glasses, visited the dentist and awaiting another filling next week.  He has endured a trip to the podiatrist and on Tuesday it will be the hairdresser.  It only takes a few minutes there as he has little hair.  We bought him a new JVC TV with built in DVD player for his new room.  He has a new digital radio.
I'm running out of things to do before he goes.  There are as usual still clothes to buy and labels to sew but I think a few fun outings are now needed.
This move of course is not the end by any means.  After he moves into the care facility I will still take him out for the day.  I look forward to sharing fish and chips with him at Cicerello's on the foreshore.  Long walks (wheelchair) along the foreshore and other places of interest.  I won't have to worry about his washing, his shopping and cleaning up after him.  There will be more time to enjoy just being with him. No longer his carer but once again his wife.
Merv can no longer enjoy scones with jam and cream as he used to.  Instead I crumble the scone and layer it with strawberry jam then smother it with cream,  A de-constructed Devonshire tea!  Merv loves it.
It's time for the Australian Open men's final.  Merv has devoured his cheesecake and drank his Milo using his special 'Safe Straw'.  He's going for Roger Federer.  Whether he wins or not won't really matter, he just enjoys the tennis.  Winter Olympics begin Friday 9th February......

Broken Dreams

As the clock struck midnight on 31st December many of us made New Year's Resolutions some of which are already forgotten.  I'm still deciding what mine can be.
One thing I knew for sure this new year will be filled with gigantic changes.  Merv will go into permanent care.  I'll begin looking for a job as I'm too young to retire at 60.  Just lots of changes which I anticipated before that clock struck midnight.
Then there are people with plans of inspiration and joy awaiting them before their worlds are turned upside down in despair.
A family I know who lost their father in the last few years suddenly lost their son only a few days ago. He had a heart attack.  He was just a young man, not old at all.  Whatever their family expectations of the coming year; they are now dashed, splintered and unrepairable.  Such grief for a family still grieving.  It is unexplainable.  Though I don't know them well, I felt the rawness of their pain and grief.
"So unfair",  I shouted out loud to myself.
Huntington's Disease is unfair but we do have time to accept and to fight.  We can put plans into action, we can start the 'Bucket List' earlier is desired.  We prepare ourselves, we prepare others and we wait for symptoms, we wait and hope there is more waiting time available before the dreaded symptoms appear.  Recently there is news of a lumbar injection trial which is showing positive results in reducing HD symptoms.  The trial is still in it's infancy but everyone with a link to HD is excited and awaits further research results with much hope.
Merv's father wasn't so lucky.  He went into hospital at the age of 65 thinking he had suffered a stroke.  "Huntington's Disease," we all said.  "No, never heard of that!"  we chorused.  We choked when we learnt it is inherited from the affected parent.  Each child has 50% chance.  From Merv's father, Merv received the gene and thus it continues to the next generation.
A family, any family can be devastated by illness or loss.  It takes the strength of all to continue on to  offer hope and support to each other.

New Year's Eve celebrations