Getting There and Back

When I was little my Dad drove us everywhere.  My Mum didn't drive therefore we either walked or caught the train or bus.  Sometimes a friend or relative would take us in their car.  All my siblings had good legs even though little legs tire easily.
Merv has long legs but his legs now tire easily.  Merv spent 30 years working at the bakery. He was on his feet for up to 12 hour shifts, five days per week.  He complained of sore feet and aching calves.  We understood his concern and spent hard earned cash on gel inserts for his shoes and visits to the podiatrist.  I am glad his feet are no longer sore but I am concerned how quickly his ability to walk any distance has declined.
We had a walk in the park next to the river this morning.  It is almost the end of the first month of Spring and it was colder than winter.  We had our coats and hats on as we braved the chill.  The sun shone but still we shivered and dreamed of warmer days ahead.
Only a few months ago we could easily walk around the park, watching the many dogs of all shapes and sizes running into the water or chasing a ball in the park.  Today we cut our walk in two by having a ten minute rest on one of the many park benches overlooking the gentle flow of the Swan River.  With the cooler air today Merv was breathing heavier than usual and he was pleased to reach the car and slide into this seat embracing the warmth and comfort the car provides. 
We are currently applying for funding to purchase a suitable wheelchair for Merv.  I believe it is important for him to have ongoing exercise but at least he will be able to have a short walk and then continue in the wheelchair to enjoy the scenery and fresh air.

Memories

A couple of days ago there was nothing to do.  I thought about all the things we could do and  I could think of absolutely nothing.  Then it hit me.  I went to the buffet and pulled out an oversized photo album of our Italian holiday in 2008, we look at it from time to time.  It takes little imagination to take the 2D photos and turn them into 3D memories.  It is a holiday to remember forever.  Merv was well and I just need to close my eyes and we are back in Venice.  The magical city on water.  I recounted to friends it was like; "stepping into a storybook."  Steeped in history, the masks we bought still hang as a reminder in our entrance way.  We cruised on MSC on both the east and west of Italy stopping at amazing ports, some of them:  Olympia, Santorini, Corfu, Majorca, Barcelona, Marseilles.  We have completed eight cruises over the years and cruising itself is such a buzz but to add Italy into the picture is mesmerising.  Our photos of Florence don't picture the train ride from Venice and the picturesque countryside complete with country style houses, pencil thin pine trees and fields of gold-cloaked sunflowers.  Walking along the streets of Florence we almost expected to

Santorini 2008

encounter the Medici family.  Australia is so new,  Florence reeks of history at every turn.  We ate pizza and sipped local wine alfresco at the piazza.  We were awed by the great masters at the Uffizi gallery and went back to view Leonardo Da Vinci and Michelangelo.  We created our own memories sitting on our quaint balcony overlooking the Arno River on a balmy afternoon enjoying local raspberries, cheese, crackers and wine.  Florence is where we discovered Limoncello in a tiny crowded restaurant.  We continued to Montebello, Rome, Pompeii, Naples and Sorrento.  Every place brings back magical memories. 
These memories give me strength and joy when the days seem dark and disappointing.

Australia Divided

Every country has one.  Today is Australia's.  It is the Grand Final day of the AFL.  Sport brings people together and every country has its own sport where supporters stop to watch, to barrack and to celebrate.  It is a day where states, families and friends are divided by the team they support.
Aussie footy begins with the pre-season game, the NAB cup in March.  In April the fight for the cup begins.  16 teams from five states of Australia play each other.  The teams play half the games at their home ground and the other half at the other team's home ground.  That accounts for many hours of flying to and fro. 
Our team, The West Coast Eagles didn't reach the finals this year.  The club has been going for 26 years and we have won three Grand Finals and played in five Grand Finals altogether.  We don't talk about the ones we lost!
Nineteen years ago a new club in WA was formed, called the Fremantle Dockers.  We didn't barrack for them and we didn't talk about them.  They beat the Eagles at home games but they still didn't make the Grand Final.  At least that was true until this year.  With the Eagles eliminated, the Dockers rose to glory and battled through to win a place in the Grand Final today.  
An extra 40 planes flew out of Perth this week as an exodus to Melbourne began. Supporters of the Dockers (their colours are purple and white) have became affectionately known as the 'Purple Haze!'
Even we have converted for the Grand Final!  If our beloved Eagles aren't there to represent WA we will support the Dockers on their journey.  I pulled out the balloon blower and decorated the lounge in purple and white balloons; displaying them in jugs and tying them to our hat rack.
We cooked a special football lunch while 100,000 supporters crammed into the MCG in Melbourne and 40,000 purple wearing supporters sat side by side in the cappuccino strip in Fremantle.  The opposing team, Hawthorn was in front all the way through the game.  With every goal from the Dockers the cheering from both the MCG and the cappuccino strip was explosive.  Unfortunately the Dockers lost by 15 points.  More than one supporter said, 'I was so pleased the Dockers finally made it into the Grand Final!'  Go the Dockers!  Hopefully victory next year.

Peace

The day dawned with an expectation of busyness.  Merv's sister had a fall yesterday and had been admitted to hospital.  Melanie is off to see the gardens of tulips at Araluen.  A staff member will drive the residents in the villa's small bus.   Merv is off to his Friday day centre group and I am booked in for the September carer's lunch.  Yes it will be a busy day. 
Only a couple of days ago I had planned to take Merv's sister in her wheelchair for a welcome wander around Tomato Lake.  There are no tomatoes, it is a small lake in the southern suburbs of Perth framed by trees and native plants.  A variety of wildlife including numerous bird species have made their nests here or rest on their way on their migration journey. A practicable concrete path allows access right around the lake, especially for wheelchair users.  A rustic simple café provides good coffee and simple treats.  I have promised this outing for sometime but either health or poor weather has prevented it happening.  Today was no different; another change of plan.
I left just after 9am and I arrived at Royal Perth Hospital before 10am.  I took time to find the very best flower arrangement, all of them simple but colourful orchids!  My sister in law was recovering well from her fall and she was happy to see me and engage in a chat.

St Mary's Cathedral is directly opposite the hospital and I remember well the numerous times I have visited, either by myself or with Melanie.  Mel was in RPH way back in 2002 for six weeks and St Mary's was a simple, plain church.  I went there not to look at the building but to spend time with my thoughts and pray.  Just a short time to rest and find peace.  In recent years St Mary's had a major renovation and I had not visited until now.  The cathedral beckoned me as I stood mesmerised by it's enormity.  I walked humbly inside and stood transfixed at the transformation before me.  It was beautiful, just beautiful.  I sat in a pew half way from the altar and opened my heart.  I spoke quietly to God asking him to bless my sister in law as she struggles with HD.  I stayed only a few minutes.  I left different than when I entered.  Peace embraced and strengthened me.
The day continued not as a struggle but a joyful celebration.

Morning Teas

Mel and I planned our morning tea at Cape Lavender for over a week and this morning we put our plan into action.  Cape Lavender Café is not on a cape at all, it is tucked away on a obscure, rather uninviting side road off West Swan Road.  The main road has many cafés, restaurants, wineries and other touristy places.  Cape Lavender Café  is small and cramped but they make the most amazing lavender scones - delightful with jam and cream! 
We thought about the calories but not for long.  It was a conscious decision to share a plate of two scones; as it was to share a bowl of deep purple lavender ice-cream!  We took our time savouring every delicious mouthful.  We chatted before we finally left our table to explore the many lavender products on display.  Mel bought a beautiful bottle of Shower Gel.  I paid the bill and there was no money leftover to spoil myself!
Morning tea is always a pleasure and a celebration when we are eating out.  Yesterday Merv's group was cancelled and we discussed the places we could go for morning tea but nothing sprang to mind.  Suddenly I said, "What about Maccas?  We haven't been there for awhile."  A done deal.  Cheap but good coffee and cheesecake for Merv; there are no high apple pies at Maccas.  Dustin went to the US a couple of years ago and upon his return he told us Maccas is called Mickey Dees.  I don't think we will ever adopt Mickey Dees name, but Maccas is close to our hearts.  Our kids (and us) had many meals and treats there during their growing years.  It was cheap and fun.

Weight Loss Woes

Hiding in my wardrobe and at the back of cupboards
Live my clothes of yesteryear
Clothes that fit my skinny lithe body
Now pulled out of hiding and shaken to un-rumple
I gingerly put them on
Surprise and relief they fit where bulges once were
But (there is always a but) I can cross out the 'lithe'
What was once 'lithe' is now rather saggy and a little baggy
I  somewhere lost fifteen kilos in fifteen months
(My friends have said they have found a few of my kilos)
I no longer look like I did at forty
I  just look fifty six and a whole lot thinner!
Those cute little belts which used to fit snugly around my trim waist
still won't fit
So where did the weight fall from if not my waist? 
Where have those kilos made from frequent indulgence of chocolates and chips disappear from?
Body sculpting is not for me
I am happy just to be the way God made me
I reflect upon all those stories of being healthy and keeping fit
I know they are true
But was I happier when I had bulges and bumps?

The Help of Angels

Mel had her regular clinic appointment this morning.   Penny, Merv's carer arrived on time at 9:30am to spend time with Merv for three hours while I took Mel to the clinic.  I had taken Mel to pathology yesterday for her routine blood test and I assumed everything would go ahead today as usual.  In hindsight that old saying; 'Assumption makes an ass of us,' rings true.
The clinic secretary told Mel her appointment is tomorrow not today!  Last month we were told Mel's specialist would be changing from this month.
Oh goodness, will we be able to see the specialist, wait for her medication from the hospital pharmacy and still have time to have her Webster packs completed at her local pharmacy?  Just like an angel her case manager walked past at that moment and I stopped her and explained our stressful predicament.  In only a few minutes she returned telling us her new specialist had come into the clinic especially to see Mel today.  He left his regular practice to do so.  He knew that Mel had run out of medication and needed this appointment to obtain her regular meds.  Soon we were ushered into his room and we were delighted to find him a compassionate and well informed doctor.  If I had a gold star I would have presented it to him!  It is not often a professional will find the time and the inspiration to reach out a hand and help in the way he did today.  We now look forward to each appointment with him in the future months.
We had more than enough time to arrange the Webster packs and return home before Penny needed to leave.  A big sigh of relief!

The Great Escape

My arm is getting better.  I have lathered it with heat rub throughout the day and swallowed those little homeopathic pills as if  they are lollies.  I have also driven 120 kms on three separate journeys.  My arm still hurts but it's holding up well with the pressure.  Dustin came over and helped shower Merv much to my relief.  Dustin stayed with Merv while I attended my appointment this evening.  I had already made the meatloaf and prepared the veggies.  I shovelled down my own quick tea of fish and lettuce before leaving them to their own devices.  I came home 3 hours later to find they loved the meatloaf and the potato mash but had not cooked the vegetables.  Their excuse?  "I didn't know there were vegetables".... hmmm the old, 'I didn't know they were there line,' works every time!  Leave a couple of blokes together and they get up to all types of mischief!
Where was I?  I was across town picking up my holiday tickets and information at a prearranged group meeting.  I am jetting off to Mauritius and South Africa in less than two weeks.  Six nights in Mauritius and an add on to South Africa with a three night stop over in Makalali Game Reserve complete with six safaris.  Between the juggling of caring for Merv and Mel, the shopping for necessary and not so necessary holiday items and the arranging of Merv's respite and subsequent shopping I will be relieved when I finally step onto the plane!  My planned escape, bad arm or not,  has been executed for some months and finally the finishing touches are almost complete.  Before I left work in March I had paid the deposit.  After I retired I used part of my superannuation to pay the balance of this once in a lifetime holiday.  I can almost hear the lions roar and see the giraffes gracefully gallop across the plains.

One Arm

We are experiencing a Spring like no other.  Usually by this time of the year the weather is warm and we are basking in the sun wearing T-shirts and a sunhat.  Today the wind howled and chilled our bones.  It is even colder than winter!
We had no plans today and I suggested a trip to Mirrabooka Shopping Centre to get a few things including a friend's birthday card.  It's Sunday and there are only a few shoppers to be seen. Perfect for us. 
Merv struggled with his walking today and toppled a few things off the shelves as we manoeuvred together through the narrow shopping  aisles.  Nothing breakable thank goodness.
I carried our heavy shopping in a sturdy bag and we returned home for lunch.  Only an hour later my right arm, just below the elbow screamed in pain.  The heavy bag was the only thing I could think of which could have caused the pain.  I continued cooking cakes and cleaning the house as time is limited in the next few days.  I applied heat rub and took my homeopathic drops for muscle and joint pain.  Now I am just waiting for it to disappear.
I began to imagine what would happen if my arm continues to scream every time I use it.  I wondered how I would manage Merv's shower this afternoon, but it wasn't difficult until it was time to put on his bed socks.  Two hands are needed!  I inhaled and took my time, knowing it can only get better.
About ten years ago I pulled a muscle in my back which caused excruciating pain every time I walked.  I had to go to the chemist in a large shopping centre for medication.  I hobbled slowly into the shop which was located at one end of the centre.  I was horrified to find they did not have the medication I needed and they put on their friendly smile and said,  "You can try the other chemist" I hobbled back to my car as the little old ladies with their walking frames overtook me and drove home.  The other chemist was at the other end of the shopping centre and it would have taken me more than an hour to walk there considering my pace at the time.  Fortunately a week later I was back to normal.  I have never forgotten that experience and I thank God each day for my good health and mobility.

In the Grand Final

I can't remember when we became avid football fans but we have barracked for the Eagles football team since they began over 25 years ago.  We have been to their games and Dustin had a season ticket this year.  It has been good for Merv.  Watching footy keeps his mind alert, you have to use your grey matter to follow what is happening.  Keeping this in mind he watches all the games of the AFL.  There are 16 national clubs and usually at least 4 games on free TV each week.  That's a lot of grey matter stimulation!
Just a few weeks ago the Eagles were eliminated for the year, they didn't even make the finals.  We were all disappointed.  There are two rival teams in WA, the Eagles were the first AFL team and the Fremantle Dockers began 18 years ago in 1995.  They were our poor cousins until they began beating us at almost every derby game.  The derby is twice a year when the Eagles play the Dockers in WA.  I think they have only been in the finals contention once before, but this year what the Eagles couldn't do the Dockers have! 
I never thought we would chant, 'Go Dockers' but we did today when they played off against Sydney in a preliminary final at Patterson Stadium in Subiaco.  We went shopping for their team colours of white and purple balloons and displayed them proudly next to our 50 inch TV.  It was an amazing game with the Dockers easily beating Sydney.  We are already planning the Grand Final next Saturday lunchtime.  It is good for Merv to be excited and look forward to next weekend.  Huntington's eats away at the mind and his response time has increased over the last few months.  I am looking forward to having a little fun, win or lose!

Friday Mystery Tour

Yesterday I missed  Mother & Daughter Day due to Merv and I sharing our story at the symposium. Today Mel was booked on the villa 's bus to Araluen but it was cancelled due to the wild & woolly weather. The bus had already picked up Merv for his Friday,  day centre and there was plenty to do at home, but nothing that couldn't wait. I grabbed my keys and hit the road.  I drove through the pouring rain to Mel's unit and teased her with my question.   "Movie or mystery tour?" I asked. 
Mel knew mystery is better than movie and took the mystery option.  She was over movies, she had already seen Smurfs 2 with Dustin on Wednesday evening and with no grandchildren I will give the Smurfs a wide berth.  I saw all the cartoons when the kids were young!
Our mystery tour began with a visit complete with umbrellas to the Margaret River Providore gourmet experience.  it is a separate store, an Aladdin's cave of gourmet jams, pickles, olive oils, dessert sauces, wines and recipe starters.  There were a thousand little plastic spoons for tasting and not enough bins.  The fig and cinnamon jam was delicious, the apricot and almond a close second.
Rosemary and garlic olives found themselves in my bag with sauces and olive oil.  Our next stop was Masters a huge warehouse of hardware and plants.  Not inspirational but what a great place to have our daily exercise without getting wet and blown away!  This was followed by lunch at the Dome in Ellenbrook for a bowl of Spring Lamb soup followed by fruit toast and coffee.  We finished our day with a stroll around the local shopping centre, foraging  for bargains in the Reject Shop.  We think our bargains are the best, but later find we bought them on the spur of the moment.  It's just shopping for fun.
I dropped Mel off and returned home along the highway as the rain burst forth.  I was home only five minutes before the bus returned Merv home again.  It is good to have fun with Mel.

 

Sharing Our Story

It's not difficult to stop traffic.  I have held out my hand in front of oncoming traffic while directing a class of 6 year olds across the street.  Another time, I witnessed a young dog jumping out of a stationary car on a major highway, it ran out on the road and traffic was banked up for miles in both directions.  We take note of what is in front of us when the picture changes.
Today Merv and I weren't directing traffic but we were sharing our story with a group of professional people at their annual symposium.  The group of 60 people listened politely to our story.  I asked Merv if he wanted to share anything but he was happy for the photos I had emailed to the coordinator to tell his story for him.  The photos were used as a slideshow on a large screen behind us. They are;  'the before and after photos.'  Photos of us on the Great China Wall in 2009,  in Santorini in 2008,  New Zealand Cruise in 2012.  Photos of Merv bowling with his carer, visiting the local wildlife centre, Merv with his hanging basket veggies and our favourite is Merv enjoying the ocean  wearing a ski jacket for floatation.  Dustin was in the water with him.
I had been asked to share our story with a group of professionals from one of our largest service groups.  They provide in home care plus a large range of residential care homes and respite accommodation. They had five separate meeting dates to ensure all their staff could attend one session.  We attended three of the five sessions to share our story.
I have no problems with public speaking.  We were pleased to be able to share our story and hope our experience will benefit others in their professional journey.
I practised my talk at home.  Our story included:  sharing we had no idea about Huntington's when we married.  Merv's father was diagnosed in 1994 and Merv was later tested the same year and found to be HD positive.  I talked about having our retirement while still at work and the many wonderful places we visited including Italy, China, Japan, Singapore and the South Pacific. I talked about how Merv is busy after his enforced retirement at 55, with social groups and ten pin bowling every Thursday.  I talked about Mel (with her permission) and how she recently found out she is also HD positive.  When I practised I faltered as the tears threatened and the lump in my throat stopped me  in my tracks.  I suddenly realised I hadn't dealt with my sorrow and pain for her, my emotions were still raw. What could I do to prevent tears while I shared our story?  During last month's first session I simply said, "Mel asked me to share her news that she is HD positive."  I shared her journey with the audience without emotion by adding a little humour. The journey already travelled and the journey ahead is easier with a good dash of humour.

Rose Coloured Glasses

Merv's neurologist explained what had happened and what to expect.  It was May 2010 when Merv became unwell.  Overnight he stopped eating, he could not remember how to turn off the tap, the simplest tasks became difficult and many tasks he was unable to complete.  Merv later said it was like having; 'a cloud in my head.'  The neurologist went on to say he expected Merv to improve and to plateau.  He was right; that was exactly what happened.  He never reached the heights of wellness again but he was able to feed himself again and complete basic tasks.  I can only explain the improvement as a warm wave of relief.
The neurologist said these 'dips' in his well being would continue and once again he was improve and plateau, never reaching the previous plateau.  Not much to look forward to there.  It  explains the reason I try to fill his day with adventures and fun times.  I don't ever want him to forget.
Merv's mobility is not so good.  Sometimes I kid myself that it is not so bad.  I put on my well-fitting rose coloured glasses and the world suddenly has a rosy warm and fuzzy hue.  It is the same as burying my head in the sand..... what you can't see can't hurt you!
We used to enjoy a 20-30 minute walk around the park but Merv's pace has slowed and his breathing is noticeable after 10-15 minutes.  I don't ever want him to stop enjoying a walk, it is always a delight to get out of the house and enjoy the sun, the trees and the wildlife. 
The next best thing is to purchase a wheelchair.  I figure he can then walk unaided for 10 minutes and finish enjoying our walk in the comfort of the chair.  Everyone wins;  I enjoy a good walk and he enjoys getting out and enjoying all that is around him.  It's just not the way I would like it to be or how we planned life.

Changing Times

'What do you want to do when you leave school?' We were asked this question when we were young and we continue to ask each generation the same question.  The answers were rather straight forward when we were young.  For us young girls; would we be a teacher or a nurse or work in an office?  Or heaven forbid a shop or restaurant!  For the blokes it was also sexist;  a doctor, a teacher, an engineer, a lawyer or maybe an apprenticeship in a male dominated trade.  We couldn't enjoy life without the expertise of plumbers and electricians!
Today when I ask young people that all important question they all tell me they want to be marine biologists!  It must be the career to be seen in!  There is a multitude of choices which are no longer gender based and online study is freely available.  Choices are not only for young people now but for mature people, just like me, who can turn their hand to a new career at any age.  It's refreshing and good for the soul.
Last week Merv saw his GP and today he saw his Dentist.  Both gentle professional men, both over 70 years and thriving working part time.  I hesitate to ask if they are thinking of retiring and let it pass, they have 140 years of life experience between them.  They graduated from university with other young people and spent all their lives doing what they love. 
Yesterday Merv visited his Podiatrist, a young man quiet and methodical.  He travels to four different clinics each week and said he enjoys this as it brings welcome variety into his week.  I imagine in another forty years he will be just like the GP and the Dentist, but maybe he will decide to take another path in life and change his profession. Only time will tell.

Market Walking

The weather man has forgotten which season it is.  The wind is howling, the rain is pouring and I believe it is Spring.  Spring is meant to be the season of warm balmy days with long pleasant lunches outside under the patio.  The days are even better with an active walk in the park,  helping our bodies wake up from winter hibernation. 
I have the heaters on.  All the heaters.  A jumper, a jacket and a scarf.  I am still cold.  Today is our day to visit Mum and enjoy a sun-kissed relaxing walk by the river afterwards.  As the wind whipped us and howled in its fury I made a brave decision.  I suggested to Merv we skip our regular walk and head for the indoor markets for a stroll.  He was happy to oblige.


Here is what is left!

The markets are a rather basic affair.  They are housed in an converted warehouse and still sport an ugly grey concrete floor.  A little paint could easily jazz the whole place up.  It is a maze of little shops offering customers almost anything you could imagine.  Today we saw a Cadillac sofa, black and white with red flashing lights for only $3,500!  Hmm I shook my head, no, not today but I imagine it could start many an interesting conversation.  The pet shop had the usual dogs, cats, birds, rats and even ferrets.  They have the biggest in-house cat I have ever seen.  It was curled up asleep in its basket.  The sign said you can ask to pat it but please close the door afterwards.  I'll pass on that one.  We walked past the Mystics and the fortune tellers and paused to look at the bonsai.  We took a trip down memory lane in the Retro shop.  They had a Ludo game which was older than us and a whole row of Pokeman toys.  Just next door we spied the Olde English Lolly Shoppe and I took Merv by the hand into the candy store.  He was suddenly a little boy again pointing to the freckles, the fudge, a variety of chocolates and long straps of liquorice.  He chose a small bag of Cadbury Favourites and a bag of liquorice allsorts.  He enjoyed some of them after lunch.  We sat inside by the heater as the wind continued to howl outside. 
We will continue to dream of outside lunches and hope the weather man will soon have good news for us.

Disability Poor

Merv's shoes were looking a little worse for wear and a quick check of the soles and I knew it was time.  Time to bin them! A couple of years ago I bought Merv a pair of Velcro strapped walking shoes. I didn't hesitate to part with $250 for them.  They looked good, they fitted well and within six months they were in the bin.  That was when I decided my $250 was poorly spent.  I am not the only one standing up and crying out - 'Why is it so expensive to have a disability?  Why do I have to pay so much more because of my disability?'  The list is endless;  shoes, clothes, anything which needs adjustment including vehicles, household appliances and mobility aids. 
I gave my predicament some thought;  I could go and buy another pair of shoes for $250 or I could ask others what they do.  My favourite answer from other carers is to buy regular joggers with Velcro straps from K-Mart or similar outlets.  Jim Kidd has been our favourite choice of shoe store.  I can buy two pairs of shoes with Velcro for $50 each. 
Today we were in BigW buying a birthday present for a little three year old.  The toy section was a few steps away from the men's shoe range and I took a minute to search the shelves.  'Take me, take me,' I felt the size 8 Velcro strapped Dunlop KT Walkers shout out.  They were Merv's size and cost an amazing $30!  We found Merv a seat and tried them on.  A perfect fit.  Not so many years ago I would especially search for KT Walkers for Merv.  The little tag on the shoes stated the KT Walkers have been around for 30 years.  'Yes,' I thought, I have bought them many times before and we have been happy with them.  I know where to start next time we are on the hunt for quality new shoes for Merv.

Jokes, Games & Life

Keeping busy is just something I do, there is always a mission, a quest or a project to pursue.  I love a challenge which brings results and gives me a buzz.  When the kids were young there were a multitude of games and adventures to explore.  As they grew they made up their own games and sought their own adventures.  My inspiration was no longer needed.
When Merv became ill in 2010 my past inspirations were once again challenged. How could I keep him stimulated and inspired each day?  Humour has always been part of our day, it is healing to laugh at ourselves.  Each day flowed into the next and I looked for tasks he could enjoy and see a result.  At first we cooked all sorts of simple things together.  Cakes, biscuits, scones, puddings and easy dinners.  We ate what we cooked, some of it more edible than others!  The cooking later became more of a chore than a pleasure and we resorted to games and more mundane tasks.  Counting money, finding directions in the street directory,  looking for popular TV programs, wiping the outside table and handing me washing to hang out.  Among these rather dull but essential tasks we played Rummicub, Dominoes, Uno, Bingo and Tri-ominos.  We read local and state newspapers, magazines and the daily devotion on the ipad.  Recently Merv has been 'playing the keyboard' on the ipad, it is soothing to hear music.  Of course there is continuous football matches in winter and cricket in summer, both eagerly watched and discussed. Every day the sun shone we were out walking either in the park or around the block.  In summer we walked early in the morning while in winter a walk before lunch worked well. 
Merv still walks but walking is more difficult for him and his stamina reduced.  Ten or fifteen minutes is as much as he is capable of now.  I miss the longer walks.
Merv has a delightful smile, it lights up his face and his eyes are full of mischief as he plays dominoes or tri-ominos with family, friends and support workers.  He is cunning in his approach and I am sure he has an angel on his shoulder whispering amazing strategies in his ear to win one game after another.  We raise our hands in despair as we lose but we are happy to see him smile, knowing he will always be a winner!

Aladdin's Cave

I am a crazy shopper, sometimes I win but often I don't.  I can spend most of the day looking for something and no matter how hard I look, it just can't be found.  I am the shopper who up-ends the neat piles of T-shirts and jumpers looking for the elusive size or colour, which obviously was never manufactured in the first place!  The size, the colour, the shape all made for other fussy shoppers but not me.  At times I am rewarded with the elusive purchase and I revel in my amazing detective skills.
Today I took to the Op Shop.  They are often an Aladdin's Cave brimming with pre-loved treasures.
I am looking for a black cardigan.  Yes, just a black cardigan, a simple black cardigan which continues to elude me.  Throughout the winter I bought:  the grey cardigan, the cream cardigan with the black stripes and the multi cream and black cardigan with sparkles.  I bought that one when I was desperate for a dressy black one but now regret it.
Last week I visited two Op shops to no avail but today I hit the jackpot!  There on the hanger among the well worn coats and cardigans which had given up fighting the lint and tissue assaults hung my prize.  It was black, all black, no stripes, not a sparkle in sight.  It wasn't new but it wasn't old and withered either.  It sat upon my shoulders and hugged me without accentuating the bits I need to hide. It felt like a trusted friend and it smiled at me when I checked the price tag.  $4!  The sparkly cardi had cost me $70!  Along with my prize black cardi I bought two used books for a total of $3.  Altogether $7, which otherwise could have cost over $100. 
I had a bounce in my step as I left the shop knowing my little contribution will help a needy family.  Maybe a couple of much needed groceries.  What goes around, comes around.

Science Fun

The last time I went to Scitech my nephew, Sam was eight years old.  Today he is a man of nineteen!  He came to stay for  a couple of days and we ventured into Scitech, a fun place for kids and adults to learn about all things science.  Sam had a ball and so did we. 

 

Renae igniting the balloons at the Scitech show
 

Today I said to Mel; "How about a visit to Scitech? It's been a long time between visits, but I am sure we could have a little fun."  I also mentioned we could stop off at the Art Gallery Café for a bite of lunch.  She was more than willing.  We caught the train as pensioners have free transport between 9:30am and 4pm.  Mel is on a disability pension and I have the carer's pension.  We arrived and I was longing for my caffeine fix.  We stopped at the café on the lower floor and treated ourselves to hot buttery fruit toast and hot drinks.  Feeling revived we headed upstairs and paid our entrance fee.  The, 'Things that Glow'  Show was about to start and we seated ourselves a few rows back to allow the many little kids and their parents to settle in front.  Renae, our presenter was zany and fresh.  The show was created more for school aged children as the littlies screamed in fear as the lights went out and Renae began her routine.  She explained there would be noise as the balloons to her right were about to be torched with a naked flame.  Poof, bang went the three balloons. I hit the shutter button on my fabulous new Sony compact camera and caught the moment!  It was quite amazing.  The show continued for twenty minutes and included lasers and glow sticks.  It was fun.  I showed Renae my photo and she was so impressed she asked me to email it to her, which I have done.  She said she will put it on their website!  Just a moment captured in time.  Mel and I continued to have fun exploring a huge array of entertaining science exhibitions, many of them 'hands on' making them both entertaining and fun.  Mel said she had a great day and I agreed with her.

You Would For Me

If I was in a wheelchair and I was cold you would do the same for me.
If I lived in a care facility and I was cold you would do the same for me.
If my speech was difficult to understand at times and I was cold you would do the same for me.
If the food I eat is soft and runny and I was cold you would do the same for me.
If I was unable to wash and dress myself and I was cold you would do the same for me.
If the clothes I am dressed in didn't keep me warm and you knew I was cold you would do the same for me.
Today I saw you at the club with your brother.  You arrived in your wheelchair and I gave you a loving hug.  The clothes you were dressed in were clean and fashionable but they were thin and the air was cold.
Without thought I took off my long warm jacket and slipped your arms into it.
I pulled it up over your shoulders to cover you and keep you warm. 
It pleased me to know you are warm.
I know you would do the same for me.

Milk and Honey

Our first settlers called Australia, The Land of Milk and Honey and they were quite right to do so.  Australia is a wonderful place to live and enjoy.  There is only one hitch.  No matter how much milk and honey you have, you can't keep everyone happy all the time.  There are flaws in the system!
When did we start complaining about money for nothing? 
Merv will be going into respite next month while I enjoy a two week overseas holiday.  The booking was made almost a year ago.  Since 2010 I have applied for funding for Merv's respite twice a year which includes his accommodation and care.  It is money funded by the federal government to allow carers to take a break.  Usually I pay three out of the fourteen days and sometimes Commonwealth Carelink Respite offers to pay the whole fourteen days.  Whoppee!  Yesterday when I rang to request funding I spoke to the team leader who explained many carers have requested funding for the next two months. I was told I would have to pay for eight days, costing $375 and they would fund six days only. 
I suddenly turned into a bull eyeing a red flag.  Six months ago I contributed $140 towards a fourteen day respite and now they want $375!  A huge increase and not something I had budgeted for.  It is similar to pulling straws and finding you pulled the short straw!
I asked to speak to the supervisor to which the team leader suggested she could take my request to a meeting and get back to me.  My blood was pumping  and the bull still raged inside of me.
When did I become too greedy?  Why do I expect too much?  I really should be grateful Merv has a clean and caring place to stay for two weeks.  Before care facilities family members or trusted friends would care for the person while their carer took a break.  Life is different now.
As I mulled over my predicament I realised this is an issue not just to me but to many carers seeking a break from their loved one.  It is impossible to budget for respite costs if one respite is affordable but the next is more than twice the amount. 
The team leader rang me today and informed me my concern was discussed at their meeting and my contribution has been reduced from $375 to $240.  A positive result for me, but how many other carers have paid more than what they can afford? 
What can I do to make a difference and ensure all carers are guaranteed affordable respite? The quest begins.

Lavendar Joy

Not so long ago I would drop by my neighbours' homes for a coffee and a chat.  The children used to play together, running around and making up their own games.  No computer games or X-box around then!  These days our houses look the same but our lifestyles are far removed from chatting with the neighbours.  My neighbours all work and involved in a number of clubs and groups.  Whatever time they have left is centred on family and rarely involves neighbours!

Which is why I was surprised the other day.  A stranger knocked on my door and asked if she could cut some of my lavender.  My garden is filled with fourteen beautiful lavender bushes, planted in 2000.  They flower twice a year and they wave in unison in the breeze. Their gentle perfume fills the air as the breeze plays; bringing sweet inhalations to all around.  Their gift is a delight to me.  I was so pleased this stranger thought the same.  She said she would place them around a wishing well they were using for an at home wedding ceremony.  I grabbed some scissors and let her cut away.  There is so much lavender on every bush, they continued to wave and grin in the sunlight without sign of being cropped.  The stranger and I began to chat and as soon as we started our conversation finished.  The stranger had a bag of my lavender and then she was on her way.  I didn't ask her name and she didn't ask mine.  She said she lives up the road.  I hope I see her again.  I would like to ask how the wedding ceremony went.

 

Spring in the Park

A trip to Kings Park is always a pleasure to plan, to enjoy and reminisce over.  Kings Park is celebrating 50 years of spring celebrations and we planned to be part of it.  Celebrations include a jazz band each Sunday, wildflower walks and other delights.  We have a vast array of native wildflowers throughout WA and a variety are grown and displayed in the park. We love the carpet of everlastings, colourful kangaroo paws and regal banksias.
Now a strategy is needed to ensure it is a visit of pleasure and wonderful memories.  Straight after breakfast I helped Merv to dress for the day, packed the water bottles and the sunhats and off we went.  Depending on traffic it is a 30 minute drive and we take the tunnel to Loftus Street; it is something different to do.  At 9:30am we arrived at the park which overlooks Perth City and is a top tourist spot.  We are happy to share our wonderful park but we also like to spend time enjoying it ourselves and often you will find us all there! The traffic was light and I spied empty car spaces. I parked quickly and efficiently.  An hour or two later and the car parks will be full and people will be parking wherever they are allowed to.
The air was still cool but warm in the sun.  We took off into the heart of the park, strolling along enjoying the many beautiful and colourful wildflowers.  We ventured on the 'treetops walk,' a bridge which provides incredible views of the city and sits
above the tree tops. I wanted to try out my new Sony compact camera and fiddled with the knobs and buttons trying out all types of wizardry.  I was quite happy with the results.  Merv held my hand as I kept him securely on the path which we shared with a crowd of people.  It is good for him to get out and enjoy his world.  Merv loves his morning tea and we found a seat in the park café.  Merv had a scone and chocolate milkshake and Mel and I shared organic fruit toast with cottage cheese.  It was delightful.  I can't wait to come back and order again!  Afterwards we walked down to the Bali memorial area, in memory of the Western Australians who died during the Bali bombings in 2002.  It is a place to rest, reflect and find peace.  The day was warming up and we retraced our steps to the car park where frustrated drivers were waiting for a space to park.  As we exited the park, a stream of cars were bumper to bumper awaiting their chance to enjoy what we had today.  I am so glad we went early and all our memories are good ones.

Broken Sleep

The quiet of night suddenly exploded with the smashing of sound just above me.  The booms of thunder came one after another like fireworks exploding in sequence.  I sat up in the darkness of my room, my mind making sense of the storm raging outside.  Yes a storm had been forecast, but I thought it said early morning?  I looked at my digital bedside clock it was 5am.  I suppose the weatherman would consider this, 'early morning',  to me it's still the middle of the night!  I am a late to bed person, arising anytime after 6am, rarely beforehand. 
The storm continued to rage and I wondered if it had woken Mel who lives about 10kms away.  It was too early to ring her and maybe, just maybe she was sleeping through it.  The lightning bolts came one after another, bringing eerie silhouettes against the horizon, the thunder responded time after time.  Eventually I nodded off  for an hour of restless sleep. 
My mind returned to 2008 when Merv, Mel and I were holidaying at Airlie Beach in Queensland a couple of days before taking a small plane to Lindeman Island  on the Great Barrier Reef.  Our beachside apartment was basic and little skinks ran across the ceiling as we turned the lights on at night.  We pretended not to see them and kept the lights off.  Mel has never been good with things which crawl and wiggle.  Our last night at Airlie Beach was disrupted by a terrifying tropical storm which had started at 3am and raged for an hour or more.  The morning had dawned with blue skies and no evidence of the storm.  I had remembered how it frightened us and left us fearful of the weather ahead.  We had no need to worry.
There are many storms in life, many of them we have no control over but we are in control of how we weather the storm.

Welcome Back

Merv's regular support worker, Joe had pressing family business overseas and was away for three weeks.  It is inevitable that support workers take holidays, medical breaks or leave altogether.  It happens all the time, but you hope it won't!  It takes time to mould a support worker (paid helper).  Firstly you have to get used to their personality and their idiosyncrasies.  In stating that, they have to get used to not only the person they are supporting plus their spouse and family members.  It is like a dance where everyone practises and learns the necessary steps ensuring no one steps on their toes.  If toes are stepped on, conflict results and it's only a phone call to the supervisor and a new support worker is knocking on your door and the dance practise begins all over again.  Familiarity is always a preference.  I remember when I was a support worker for a large community service provider.  I successfully applied to be an Assistant Coordinator and gave two weeks notice before beginning my new career in the office.  My clients were sad to see me go.  Some of them even cried and complained they would have to get used to someone new.  I had over time understood each of my clients and how I could support them while encouraging them to be as independent as possible in their own homes. 
Joe is back and we welcomed him and told him we missed him.  We did.  Joe has his flaws, those idiosyncrasies which we all have but he knows and understands Merv and the family and we don't want to start again with someone new.  Welcome back Joe.

Calling The Cavalry!

I was already tired when I awoke this morning and I knew I had to be ready for battle.  Not the sword wielding, armour wrestling type.  Far too easy.  The battle I was preparing leaves no bloodshed just frustration and exhaustion.  I arrived at Mel's unit at 9:30am.  She has moved to her new unit, which isn't really new, she was originally housed here almost three years ago before changing to another unit.  The units are part of a village style community for people with an array of mental health issues.
She stood alone in the middle of her room surrounded by piles of plastic bags and an array of paraphernalia.  I took a deep breath and stood with her.  Firstly the decision to be made; where to place the furniture including the bed to utilise the space efficiently.  Secondly to do the pushing, shoving, placing of furniture, changing the initial plan and trying all over again.  A support worker asked Mel to help clean up and pack her remaining belongings in her old unit.  I was left alone among the sea of bags and became quite overwhelmed at the task at hand.  I panicked and called the cavalry!  My sister was my point of call and I felt guilty she had worked an overnight shift and promised to come and help at 2pm after her shift finished.  Hope at last!  We stopped at 12pm for a break and some lunch but we were soon back on the scene. The support workers had rallied together and took charge of Mel's remaining belongings bringing them to her new unit just after we arrived back.  Now there were not only bags of stuff everywhere but bedding, shoes and clothing strewn over the lounge and bedroom floors.  Quietly I put bags of things she never uses into my car.  They will go home with me and never revisit the unit again.  To be fair I will go through everything and keep anything I think she will use or re-home it as necessary.  Mel is a hoarder of much and people generously give her things they no longer need or want.  I have a wonderful skill of throwing things when she isn't looking. 
Mel helped make the bed, put the 100's of DVDs and CDs away and hang the clothes in the wardrobe.  My sister like a soldier on a mission took charge of the clothes and bedding items in the lounge and was soon organising the bedroom as well. We were all so very tired and we called it a day after 3pm, promising to return to finalise the bedroom transformation.  With Mel's and my sister's help the task had been completed to a satisfactory level.  To be continued.....

Intuition

Explorers say the mountain ahead of them is there to be conquered and I am a bit the same with things of interest which come my way.  My local library advertised  four, one hour presentations on Intuition over four consecutive Wednesdays.  I booked myself in, hoping it would be something which would grab me, shake me and speak to my inner being.  I imagined during one of my many lucid moments intuition would be beneficial in my caring role.  What was I thinking? 
The presenter shared the meaning of intuition from her Google search on Wikipedia; 'The word intuition comes from Latin verb intueri which is usually translated as to look inside or to contemplate.^'  She pointed out Richard Branson and Steve Jobs both used intuition in their business journey.
I had arrived at the library just on 10am to an almost full room, there were only three empty seats. The presenter raised her eyebrows and stated she was not happy with anyone arriving late.  I thought I was exactly on time!  She was wearing a black pant suit, a colourful nylon scarf and shabby joggers. I wondered about the joggers and what they represented. I was looking for some action by this time but kept slipping past my intuitiveness into a relaxed state of slumber. Quick, Pamela I thought to myself; sit up straight or perch on the edge of your seat.  We were all encouraged to share about ourselves for a few minutes and I listened attentively until the man at the end of the room shared a mind blowing belief.  He wasn't sure if he is on the right planet!  The woman next to him agreed and the presenter smiled.  Oh goodness me,  I don't have time to consider thoughts about what planet I should be on!  The hour wore on with nothing of note shaking me into a conscious awareness.  The presenter complained a number of times that the morning tea trolley had not been delivered as she was hanging out for a coffee before her hospital appointment she was to rush off to in an hour.  My hour into a different world was effective.  I learnt intuition maybe a gift which we can all explore but I will continue my journey feeling more in tune with life and relaxed if I miss the presentations and just get on with life.

Staying Put

People tell me moving house is as stressful as a heart attack or a divorce.  I am not likely to find out any time soon.  We bought this house, with the bank's help in 1985 and we are still here!  As a young girl my family moved around so often and I vividly remember changing primary schools in the last six months of  my last year.  The primary school was small and the kids friendly which helped but I promised not to do that to our own children.   Dustin was eight and Mel was six when we moved here and after they finished high school we thought about moving.  We went and looked here and there and always returned home, put up our feet and had a cuppa.  We were home, why did we want to move?  Our neighbours have all been here longer than us.  All our children grew up together playing in each other's yards and cricket on the local oval.  They bought their own cars and added sub-woofers keeping the neighbourhood rocking with headaches all night! Eventually they left home and some of these now grown children have their own children.  I have no plans to move at present.  We spent $30,000 in renovations last year, knowing my working career would soon finish.  Half of the money went into a complete renovation of our very tired and shabby bathroom.  Our builder stripped the bathroom completely.  The old bath was replaced with a modern toilet, floor to ceiling classic modern tiles, non-slip floor tiles and quality accessories. We now have a walk-in shower, commonly known as a, 'wet room.'  It is ideal to shower Merv and there is plenty of room for the shower chair.
Mel rang today and said she is moving from her current unit to another unit in the village which she lives.  She is so excited and the support staff helped her move her belongings.  I am surprised she owns so much, I am very good at chucking stuff.  Last year when we had the house recarpeted, Dustin and I moved all the furniture out of each room.  What a field day I had, chucking this and chucking that.  I don't have any regrets, but I do have more room in my cupboards and wardrobes!

Respite

Originally my respite during the week was for the sole purpose to allow me to work.  We needed the money to pay the bills.  I did this for three years.  Rushing off to work, rushing home afterwards and having little time for myself away from home.  Did I feel guilty?  Sometimes, but we had bills which needed paying and I had a good job which paid well.  I looked after a large group of volunteers.  The volunteers assisted in providing transport for our elderly and disabled clients.  The volunteers also provided a number of other tasks which freed up staff to complete the tasks they were employed to complete.
After I resigned from work I continued to accept respite for Merv.  I no longer worked but I used my time to enjoy a day or more with Mel and follow my dreams in creative writing and other self-improvement skills.  Did I feel guilty?  Yes, but I knew I needed a break to keep me strong, or as the saying goes; 'to keep my head above water.'  There is no easy answer.  Today I was asked questions about my respite journey; answers to provide information about me for a respite care plan. This agency  provides us with a three hour respite each month. I use the time to take Mel to her four weekly clinic appointment.  Another agency provides respite on Wednesday afternoon and all day Thursday.  While I am away pursuing my dreams or spending quality time with Mel I have to believe and trust the support worker to read and carry out the instructions in Merv's care plan.  Will they know to prompt Merv to drink or will they forget?  Will they remember to prompt his lunch or remember to take his sunhat if they have a walk together?  Life is a lot about trust.

Fathers Day Delight

'Wakey, wakey,' I greeted Merv as I opened the blind in his room this morning.  It's the first day of September, the first day of Spring and Father's Day all wrapped into one!  Mel stayed over and we were waiting with presents to surprise him.  Breakfast was nothing special as the day ahead was filled with food.  Mel surprised her Dad with a 'Super Dad' mug containing three choc lollies; a football, a soccer ball and a golf ball.  Merv had asked for a torch and Mel gave him a fluorescent tiny torch attached to a larnyard.  It's very easy for Merv to use especially when he is in respite and needs to go to the toilet in the middle of the night.  I gave Merv his new techno shaver.  I had already charged it and we tried it out before our walk this morning.  Works really well!  I also bought Merv a water bottle holder with strap.  He can take his water bottle in the holder, when he goes out and does not have to worry about dropping it or having to carry it in a bag.  The strap fits snugly across his shoulder and won't fall off.  It is dark green in colour and looks very blokey!  Dustin arrived after our walk in the park as I was preparing morning tea.  I cooked Merv a new chocolate cake and served it with strawberries and cream.  Yummy.  A short drive into the Swan Valley and we arrived at Chesters Restaurant for lunch.  We ordered first and visited the cellar door to sample their wines.  The restaurant was full but we were the only wine tasters.  We not only sampled many of their wines but stayed and enjoyed a chat about a variety of topics; local and otherwise.  Lunch was scrumptious, Merv and Mel had the Barramundi,  Dustin the Lamb Shanks and myself the beautiful Tasmanian Salmon topped with bacon wrapped perfectly cooked asparagus. The salmon was perched on a delicious potato-inspired square, all light and delicious.  Dessert came next and Dustin and I shared a beautiful sticky date pudding complete with homemade ice-cream and syrup.  Ohh, it was delightful.  Merv enjoyed a lemon merinque and Mel was amazing and refused everything stating her Weight Watchers journey should not be jeopardised.   We arrived home and on the way to drop Mel off at her unit we decided the day had not finished and what could be more perfect than a visit to the Dome Café for late afternoon tea?  Merv beamed at the thought of apple pie and cream washed down with a chocolate milkshake!  Mel had the skinny choc drink along with Dustin and I stuck with coffee.  The day was soon finished and we resigned ourselves to the comfort of our lounge chairs and a well deserved rest.