The Last Post

It's my anniversary today.  I haven't been looking forward to it. I had hoped it would pass me by, but here it is.  It is exactly twelve months today since my first post on Big Bad Harry.  I had no idea what I was doing, where I was going or how it would end.  Hindsight. I love it.  Only weeks ago I realised a year was enough time to make a change of plan. I am not yet a published writer or poet, but I have written stories and penned verse at various times in my life.  My story or stories of others I have recounted have been published in various community magazines. 

I have decided this is the ultimate time to put my head down, take up my pen (iPad) and let my imagination run wild! 
Since 28 May 2013, my blog to date has had 7856 hits.  Most of them are from Australia and the United States but I am amazed when I see my post is read in Afghanistan, Moldova, China, Germany, France and so many other countries I had not expected. I am amazed that anyone wants to read about my weird and usually boring life (I did go to Mauritius and South Africa last October - definitely amazing)

I will  continue to write spasmodically about life as a carer to Merv and Mel on Big Bad Harry but no longer every day.  The road ahead will be full of challenges and we will deal with each one as they come our way.  In the mean time we will enjoy life and make everyday count. 
I will be starting a new weekly blog in the next week.  A link will be posted to the new blog on Big Bad Harry.  Thank you for sharing our journey with us.

Cooking Up A Storm

It doesn't seem so long ago I was cooking amazing dinners, baking cakes and biscuits and creating delicious desserts.  Today I thought I may try and recreate these happy memories.  Firstly I went shopping and bought some very tasty looking Sara Lee apple pies!  I already have custard in a carton in the fridge.  Dustin is calling in after work.  He has to travel in peak hour across the city, I know he will be hungry.  I don't have the time or inspiration to make dessert but dinner is another matter! I put Merv to work cutting up carrots which I have already peeled, topped and tailed.  Then we get stuck into six potatoes.  Once again I am peeling and Merv is slicing.  Today I am making everyone's favourite; Shepherd's Pie, also known as Cottage Pie.  It is a mixture of mince, vegetables and gravy topped with mashed potato and cooked lovingly in the oven.  I dice onions, pick fresh thyme from Merv's hanging basket and measure; stock, Worcestershire and soy sauce to create the gravy in which it will cook.  I stir while watching it with my eagle eye.  I don't want it to become dry or burn in the pan before it finishes off in the oven.  I whisk the potato until it shines and looks like silk.  My amazing mince is topped with my silky potato in a casserole dish and placed in the oven.  Dustin arrives and I am chopping pumpkin, brussel sprouts and cabbage.  The apple pies are thrust into the oven to take the chill off them after I have browned the potato under the grill. The Shepherd's Pie is the star of the kitchen.  I serve and we all enjoy my home cooked delight.  No one complains about the apple pies.  It's taken hours to prepare, cook, serve dinner plus the clean up today.  I am pleased I cooked but tomorrow it will be canned soup (again)!

Community Colleagues

Community services in Perth is a place where you often bump into people you work with, people you have previously worked with and others you will probably work with next time either you or they change jobs!  This morning Merv was booked for his annual community services review.  The young  (younger than us) man who knocked on the door was a previous colleague of mine!  Not only did he join my last workplace after I was well settled, we had both worked at a different organisation before that!  I began in the first workplace we shared in 2004. He was in the IT department and his help was often called upon.  I left in 2009 and he joined my new workplace a couple of years later.  He came not as an IT person but a gardener, a team member providing safe gardens for persons of need in the local community.  It was a job, more of a break from IT than a permanent change. An opportunity as an assessor came his way a year later. Today the assessment lasted ninety minutes, we completed Merv's  assessment as we recounted stories, laughed at our memories and delighted in a little harmless gossip. 

Autumn Cleaning

The rain pounds upon the roof and saturates the garden.  The weeds are no longer dieting but are growing fat and leafy on every bucket load of rain. My back paving is full of wild grass.  It will have to wait, I'm busy cleaning, scrubbing, sorting and defrosting.  I am a woman possessed, only stopping for an occasional coffee and lunch with Merv.  A quick and easy sandwich. Merv has happily retreated to the lounge to spend this wet and weary day watching footy.  I am happy he is not demanding my attention.  After lunch we played a few games of dominoes and the Quirkle game. Finally the house has had a much needed a 'spring clean'  in the last week of autumn!

Wainwright Walk

The Wainwright Walk

In the Lake District UK

I'm buzzing.  I am excited.  Big sister and I have been planning the Wainwright Walk for several months.  Our walk is planned for 2015. There has been numerous considerations  to discuss concerning a month away from home.  Some of them being:  Melanie's welfare, Mum,  my sister's family and of course Merv.  The Wainwright Walk is a west to east 190miles (304kms) walk across England from St Bees to Robin Hood Bay.  A guided walk takes 13 days and encompasses a variety of hilly climbs and rocky outcrops to conquer.  It can be tough going.  We have decided to complete the walk in the early part of the English summer next year. We have watched numerous DVDs and checked websites on the Wainwright Walk before finally making a decision to just do it!  Big sister suggested we use the walk to raise funds for the WA Huntington's Association.  What a great idea.  Now the ideas of how to raise awareness of our walk and encourage donations from friends, family and the wider public is now ready for a little brainstorming.  Everyone has new ideas and we are more than happy to hear them!

Unexpected Response

Today I attended a mental health carer's group.  Mel has lived with mental health issues for over twenty years and I thought I had a good understanding of her issues and responses.  What I thought was only applicable to Mel I found out today it can also apply to others.  I am always surprised when Mel doesn't respond emotionally to a situation which I would respond to.  I always thought it was just 'her'.  Today I heard another person's testimony where their loved one did exactly the same.  I was floored.  It was something that is so obvious but had kept me in the dark for so long.  It's a coping strategy.  Where something unexpected happens it is so outside the boundaries of the person, their reaction is stilted. The unexpected response often includes a  time lapse; sometimes hours later or in severe cases months or years.  Just by listening to this person's story, Mel's responses became clearer to me. Bless her.

Time to Stop

Packaged but fresh and tasty lunch

I rushed out the door as the support worker arrived.  I rushed off to my HD carer's support meeting.  I breathed deeply and there I was; cool, collective and serene in my mind.  I probably looked; stressed, frazzled and wind blown!  The meeting as usual was full of interesting discussion and even included a cheque donation and presentation from a swimming club who has donated to HD for a number of years.  We behaved nicely and smiled for the camera.  Instead of our usual get together lunch afterwards everyone went  their own way and I was left standing.  My immediate thought was to take off and take Mel to her routine heart test.  The test is necessary due to her ongoing mental health medication.  I sat in my car calming the thoughts running rampant in my mind.  A SW from the villas was booked to take Mel to her appointment, I didn't need to upset the plans already in motion.  I drove the car to Kings Park, just down the road and enjoyed a healthy sandwich and coffee while overlooking the city.  I checked my emails, took photos and jotted down ideas for my story writing.  I browsed through the Kings Park amazing and very expensive gift shop and enjoyed a little time just for myself.  Just what the doctor ordered!

 

View of Perth City from Kings Park

A Wind Change

It's a Mary Poppins wind change.  Life is forever changing and at times we just stop and take heed.  It happens when we least expect it to.  My little sister is looking for a job, her husband is starting a new job.  Big sister has also experienced new changes at her job and Dustin has a new job and a new place to live.  Mel is just about ready to go to the gym.  So many changes.  Merv with the help of his speech therapist is learning how to use the Proloquo2go app on an iPad and we have ordered his new wheelchair.  It is fully funded.  That leaves me.  With all these changes around me I have put my own plan into action. What does a retiree like me have in the big plan of things?  It's out with the old and in with the new.  I have been writing my blog since May last year.  I have missed a few days here and there but now I have over three hundred ideas to get me started with scribbling down my short stories, my poetry and my novels.  There is no time like the present.  Blogging has become part of my everyday life.  I don't intend to stop just slow it down a bit.  Today I began my journey by scribbling my first short story.  It's been many years since I wrote the last one!  Long before I had a computer. I am so excited about my scribble, I dream of the finished manuscript.  I just have to do it!



Scribble Scribble

Marvellous Mel

Mel after losing 13.8kgs

Mel was grinning when we picked her up from Weight Watchers today.  I knew she had lost weight over the past week but I wasn't prepared for what I was about to hear.  She told me she had lost 2.6kgs in one week!  "Oh no, that must be wrong, no-one loses that much in a week," I said.  As I was leaving the car park I asked to see her WW card.  I braked to a stop at the T junction, taking note there was no one behind me!  I checked her entry for today and there it was;  a loss of 2.6kgs, currently 84.8kgs and total loss since joining 13.8kgs!  Mel said they had double checked her weight, just to be sure!
I drove her home and I took a photo of her 84.8kg body.  I was so chuffed I sent family and friends a text message complete with her photo.  I entered her weight on the iPad WW app.  Even the app was impressed!
How did she do it?  The WW leader told her last week she would lose a little weight after finishing her antibiotics (she had put on 2kgs last month during Easter but only lost 200g afterwards).  Her daily routine has been recommenced including daily exercise.  Then the secret was exposed!  Mel said she had not had any junk food in the last week and was even counting her WW pro points.  I wanted to sing Hallelujah! 
Mel's present goal is 84.4kgs.  Only 400g to go!  We have pencilled in a body massage when she reaches this goal, a dinner together at 81.9kg and a day spa at 76.9kg.  Goals are a fabulous incentive when the goal is achievable!  Well done Mel!



What's Your Spiel?

I put down the phone and sighed.  Customer service isn't what it used to be.  After pressing six different numbers on the key pad being directed by a machine I am eventually put through to a living breathing person.  I am ecstatic.  I discuss my query and the person turns into a robot.  It's the company spiel, a learned message delivered with a small smudge of compassion.  Nothing personal, one size fits all.  It takes time and persistence to talk the spiel reader into listening to your concern.   Sometimes it works and the tone of the conversation changes and once again you are a person of worth.  Other times there is no change except for the next spiel and the proverbial, 'I'm sorry, we are unable to help you on that.'   There are also the spiels by smaller companies and community services.  Spiels are often condescending; they tend to make me feel like I am five years old and incapable of understanding or common sense.
Only last week I rang to find out when Merv's RAS review would happen, it was already five weeks overdue.  The manager rang me back.  She knew her spiel off by heart and repeated it several times in as many minutes.  Her spiel suggested others were more important and we should wait.  I worked with RAS a few years ago.  New clients are of great importance; providing necessary community services to those in need.  I agreed with the manger.  I was told Merv would have to wait up to six months for his review.  I told her I had worked for RAS and recently met a previous colleague who suggested I ring to enquire as her own workload was up to date. A deep sigh is heard and a RAS worker is booked to complete Merv's review next  Monday morning.

Revisiting Japan

Merv on the Costa as 'Mr Pizza!'

On an overcast chilly morning we sorted out my recipes which until now they have been lovingly collected with no home of their own, just stored in a large acrylic recipe holder.  Merv sorted them into;  dinners, desserts, pizzas (we have an electric pizza oven), soups and miscellaneous.  He did a good job of sorting and they were given new folders as homes.  Merv chose a few recipes for me to cook, but not today!  Merv had been asked by the OT at the HD social group to bring a photo next Wednesday of a place he has travelled to.  I dug out the large group photos of us taken in China, one at the Forbidden City and the other at Juyongguan Great Wall.  This started a sequence of events finishing with me foraging for the diary I had kept throughout our Japan/China trip.  We had flown from Perth to Shangai via, Hong Kong in late August 2009.  We boarded a small Costa cruise ship to Japan from Shangai for a six day cruise stopping only at Nagasaki and Fukuoka ports.  As I read the entry for each day of the cruise, memories came flooding back.  The Costa is an Italian ship and offered both Italian and Asian menus.  One of my first orders was Chinese pasta which was presented as a plate of worm-like pasta topped with a couple of mushrooms.  I ate the mushrooms! Merv played it safe always ordering Italian while I ventured outside my comfort zone and tried true Asian food.  No Aussie-Chinese foods here.  It was a real eye opener when I realised many Chinese meals in Australian are created for the Aussie palate!  No fried rice as we know it and the spring rolls were filled with bean curd and not vegetables as we had hoped.  By the time we left China a month later we were both enjoying a daily bean curd dumpling!  We laughed as we read about Merv pretending to be 'Mr Pizza' during one of the many evening entertainment sessions at one of the bars.  He had to pretend to make pizza, sing and dance with the applause of the audience deciding the winner.  He didn't win the contest but we both had a lot of fun!

Enjoying dessert at Japanese Maccas

 Kimono clad girls in Nagasaki shopping mall 
providing entertainment

A Stella Story

It's Saturday, the sun is shining and we begin the day with a trip to the library to return Mel's DVDs and books she borrowed last week.  We enjoy a five minute walk in the autumn sun before driving to the deli and picking up today's West Australian newspaper. 


Stella Young: an amazing lady

I sip my coffee while scanning the paper in hope of a little interesting reading.  There is a lot of response on the national budget handed down on Thursday.  I read a good proportion of them but the story which captures my attention is on page 113 from Stella Young, an outspoken disability activist. Stella is also a comedian and editor of the ABC's Ramp Up website. Today her news story begins with comments on the federal government requiring people on a disability pension under the age of 35 to either work for the dole or assist them to acquire employment.  Sounds good, but the reality is it's full of pitfalls.  Stella tells the story of a young student in a wheelchair who she sees often on her commute to work, they nod at each other and she sees his books on his tray are business type textbooks.  This continues until one day she sees him no more.  She imagines he has found a suitable job in his chosen career path and these thoughts warm her.  It is only her imagination, she later sees him selling copies of a disability magazine in the city.  They no longer nod to each other, her dream for him is shattered.  She sees him regularly and believes discrimination has prevented him from attaining his dream.  Stella was born with Osteogenesis imperfect (brittle bone disease).  She mobilises in a motorised wheelchair and has many experiences of discrimination.  I relate to her story.  I would love Mel to have a job.  We have tried employment and volunteer work but her ability to keep on task and work efficiently is limited.  Stella's story is a nudge for me to keep seeking attainable work, whether paid or voluntary for Mel.

Routine

I love throwing routine out of  window when on holiday, whatever comes my way I am happy with.  At home I'm not known as an impulsive person. I like my routine but I don't like to be bored!  Routine at home helps us to stay on track.  It's those boring everyday things which become 'Ground Hog Day' moments.  A little variety and spice between the everyday times and chores keeps each day a little different and at least enjoyable!  Meal times at home has its own routine, I can do all of this with my eyes closed!  We sit together and break bread which bonds us together, it's a union which satisfies our hunger and the need for companionship.  It is the same each afternoon as I prepare the bathroom and bedroom for Merv's shower.  There is the ever constant routine of what is needed, mats to go on the floor and shower wash to be ready.  It is a time of intimacy as I help him wash, rinse and dry. Finally I help him dress and he is ready for bedtime later on.  We depend on our everyday routine for harmony and comfort in our relationship.  It works just fine!

Tumble, Stumble or Fall?

I arrived home yesterday to learn Merv had fallen at the HD social group.  His support worker who takes him home was with him but every staff member was busy elsewhere!  His support worker said he had a, 'tumble.'   I don't know what he meant by a tumble.  As a professional support worker I know what a fall is, but the word, 'tumble' is never used in falls training.  I needed further information and asked for a detailed description.  Merv did not tumble, he fell.  This is not unusual for people with HD, their balance is impaired.  Merv hit the floor landing on his shoulder.  He reacted quickly and managed to pull himself up with a little assistance from the support worker.  Merv did not suffer any injuries or loss of confidence, which I was grateful for.   The biggest problem was the communication between support worker and staff at the HD group.   The staff took the support worker's, 'tumble' to be a 'stumble', which is not a fall at all, more of a balance impairment but not hitting the floor.  I had hoped an overnight email would clarify this situation but unfortunately it didn't.  I rang the support worker who was again with Merv today to clarify once again before sending another email to confirm; yes it was a fall, not a stumble or a tumble!  Using the correct terminology will keep everyone on the same page, saving time and stress!

National Budget Pain

Mel went home today.  Her antibiotics have finally come to an end.  She is so much better and we are much relieved!  I dropped her off to her Wednesday art class before running some errands finishing up enjoying a Gloria Jeans coffee and reading the newspaper.  I was checking out the National annual budget brought down yesterday.  There is not a lot which will effect us on the pension, except the petrol increase and prescription increase.  I am not sure if we will pay the $7 co-payment when visiting a GP, as we only sign and do not pay when we visit a doctor.  We pay for specialists like everyone else does.  The daily paper comprehensively covered the budget and how it will affect a range of everyday people in our community.  It's a difficult budget for uni students and young families with the change to the family tax benefit.  I met a friend in the supermarket this afternoon who said she was disgusted with the budget and had slammed her kitchen cupboard door while thinking how it will affect her family.  It is never easy juggling money with a young family.  She is now a single parent and I felt her frustration. The government assures us their budget is tough to bring down the spiralling deficit.  The budget will cut sizable funding from; education, family payments, health, foreign aid and public service jobs.  There are some winners and some good ideas but families and students are losing out. 
A week from now we will have our attention on something new but the nation's government  will continue on their campaign in hope of reducing the country's deficit at the expense of the everyday man in the street.