The Good, The Bad & Harry

Merv plays Ten-Pin Bowling

A year is a long time to remember, but there are some things which just stand out, usually they are the Good and the Bad.  In the year gone I have to add Big, Bad Harry.  Harry represents the changes which Huntington's Disease has made to our lives.  A sense of humour is helpful.

All the Good Things:


• Our fun filled family holiday in Mandurah in June                          
• Melanie took her HD positive news better than expected
• Dustin is happy with his life and his job
• Merv continues to attend the HD social group, a local day centre and plays ten pin bowling each Thursday with his support worker
• I am grateful for ongoing respite hours which allows me to spend quality time with Mel and have a little spare time for myself.
• I retired from work, freeing up quality time with Merv and Mel
• We paid off our credit card, a millstone around our neck after consulting a financial advisor
• I had time to attend 3 different, but relevant carer support groups since April
• I attended 2 carer retreats
• I completed the first stage of the Cape to Cape (WA) walk with Travel With Me in April
• My amazing Mauritius holiday and South African safari in October
• Christmas celebrations with family throughout December
• Merv enjoys his two fortnightly respites.  One in April and the last in October while I was away on holiday.  He is welcomed there.

All the Bad Things:

• I retired from work due to Merv and Mel's increasing needs.  I miss my much loved job as a coordinator for sixty volunteers
• Being on the pension means careful financial planning and restricted spending
• Our social life and going out together has noticeably reduced

And then there was Big, Bad Harry:

•  Mel was tested for Huntington's Disease in April and received a positive result in May
• Merv's sister who has HD is now in a wheelchair most of the time.  All her food is now vitamised
• Merv decline in the last year includes: slower response, difficulty in walking and amount of walking, difficulty in speech and swallowing
• My independence is limited. I need to book others to care for Merv if I plan an outing outside of his regular respite times

In a nutshell, it's not so bad, we have much more to be thankful for than to despair over.
As we wrap up 2013 we look forward to 2014.


         

A Basket of Joy

Merv stumbles out the door and grabs the hose from me.  His daily ritual is to water his plants under the patio.  They are prolific in flower and fruit.  He mumbles about the plants in the mini greenhouse and he pulls my arm towards them.  Ah,  I see what he is doing his best to tell me.  There are numerous baby capsicums eagerly sprouting.   We were besieged by red and yellow coloured tomatoes over Christmas.  We were waiting for the yellow tomatoes to turn red, only to find they were ripe and were 'born' yellow, they were never going to turn red!  I cut some of them up and put them on his lunch plate everyday.  I want him to taste and delight in the fruits of his labour.  Alongside the tomatoes today, I placed a lone strawberry which had ripened in its hanging basket. 
Later today I found a beautiful glossy green capsicum hiding under a leafy canopy. A quick twist of the stalk, mixed with gleeful delight from us both and it sits proudly in our fridge awaiting our end of year celebrations tomorrow.
Merv's petunias and marigolds are a splendid cascade of colours and a delight to the eye.
As Merv becomes increasingly dependent on me, his garden is a joy we can share together.

Playing A New Game

Merv likes to play games.  He has been a ten pin bowling player since his teenage years.   When we were young and courting (such a long time ago!) most of our games were centred on chasing me along the beach!  Merv played endless games with our children; from building block constructions with Dustin as a toddler to Monopoly and other board games.
It is now second nature that we play games and we have begun games on the iPad.  Today we found a scrambled games of animal names.  We laughed together as we helped each other un-jumble the letters.  Merv spends endless hours playing games with his support workers and with Mel when she visits. 
When I thought what I could buy Merv for Christmas it was simply to buy some new games.  I visited the toy shops,  I visited the Games Shop and I went to all the big department stores.  I just needed something he will enjoy and something he can succeed in. 
I choose a magnetic dart board and a game called Qwirkle. 
Qwirkle is a colour and shape version of dominos.  I changed the rules to match the colours or shapes but without the scoring and winning.  It is merely the joy of completing the game and the strategies employed in doing so.  Merv enjoys it.  I enjoy it and no one wins or loses!

Forward Thinking

I am winding down as the year's last days are ticking away and thoughts of 2014 begin to form pictures and patterns in my mind.  I'm still lethargic after the Christmas rush but I have already sorted out the budget for the next six months and planned the holidays for the coming year.   My mind wanders and I imagine I finish my first novel.  I imagine Mel's room is immaculate.  I imagine Dustin finally sorts out his superannuation and Merv no longer has Huntington's.  
Oh wishful thinking!  I yawn, I stretch and return to the moment of reality.
In some ways I have my head in the sand, I have only planned ahead for the things I know will not change next year.
The changes which could affect Merv and Mel I wont think about, not until they knock on my door and demand to be heard.

Missing Mel

Mel & Harriet on Christmas Day

I am missing Mel this Christmas week.  I am so pleased she came with her friend, Harriet to celebrate Christmas Day with us.  We picked them up early in the morning and took them home before 6pm. It is the first ever Christmas she has not slept over on Christmas Eve or stayed Christmas night.  I miss her.  Less than twelve months ago Mel would stay over most weekends.  The three of us would go out somewhere special often adding a morning tea stop along the way.  Then it stopped.  Mel chose to stay at her own place but sometimes she will come home during the day and has stayed over less than a handful of times.  There appears no obvious reason for her change in habit.  Was it the news she is HD positive which she learnt about in May?  I am not sure.  All I know is life is different now.  We can't go back and change history, we just need to make the most of the situation before us.  I miss you this week Mel.

Harry Spoils Boxing Day

Christmas Day is tradition just like Boxing Day. Merv's annual Liquorice All Sorts are also a Christmas tradition.  Not widely known outside our immediate family but still a tradition.  Each year I have bought, wrapped and not necessarily surprised him with boxes of liquorice all sorts.  It was no different this year.
After a slow start to the day I opened up the first of two boxes and left them next to his lounge chair.  I went about cleaning the kitchen and tidying the house. 
My ears suddenly sent a siren call to my brain.  I ran into the lounge as Merv was struggling to catch his breath.  His voice was barely audible as I instructed him to sit straight and cough hard.  It must have been only a number of seconds but it seemed a life time before he was able to breath freely again. 
My heart sank as I knew this is the last Christmas Merv will receive his treasured liquorice all sorts.  Big bad Harry lurks waiting to spoil our joy.  He has achieved his goal today.

All I Want for Christmas

Christmas Lunch in the Bell House

The day dawned and I was up not long afterwards.  I woke Merv up earlier than usual.  Christmas Carols filled the air and he gave me a kiss and said, "All I want for Christmas is you!"  I smiled at him and kissed  him again.  A lovely way to start the day.
Then the day just got crazy!  I picked up Mel and her friend Harriet.  Harriet has no family to celebrate with and we were happy she joined us today.  Back home and we arranged morning tea ready for Dustin who is picking up my Mum.  I was rushing out the door to pick up Merv's sister Vicki and ten minutes later I suddenly asked myself if I had turned on the oven or were the turkey rolls sitting in a cold oven?  I shivered.  When I arrived to pick up Vicki I rang home to find, yes I had put the turkey rolls in the oven and no, I hadn't turned on the oven.  All fixed and no problem with the turkey cooking in time.  We arrived home to find everyone enjoying Christmas morning tea.  I settled Vicki with a panna cotta and resumed the lunch preparation.  Dustin had brought over his coffee machine, complete with grinder and milk frother.  Beautiful coffee.


Merv checking out a new T-shirt

It was my first time blending turkey, potato and vegetables for Vicki.  I  had seen her bowl during a previous visit to her place of residence and I copied how the vegetables are spaced separately with the vibrant green of the broccoli and the deep orange of the pumpkin.  I surprised myself by blending the turkey with gravy into a palatable soft consistency with not a lump to be seen.  Vicki enjoyed every mouthful. Our traditional Christmas lunch finally went to plan and we stretched afterwards and sighed that we had eaten far too much.  We opened the presents at 2pm and everyone had a wonderful day of celebration and family fun.  Only 365 days to next Christmas!


Next Stop Christmas

Sitting on a train I  check out which station is next, even though I already know each station and their order.  It's a lot like that with Christmas.  I know when its coming, I know what to do to make it happen and just like the train, I know what not to do.  I know all of this, but each year it's like  my very first.  I buy too much,  I cook and prepare too much food, I expect family to read my mind and know exactly what I would like them to do.  Next year will be the same. 

What do I love about Christmas?
The reason for Christmas is never out of date.  The joy of the birth of the Saviour is everywhere.  I look for it often at Christmas and find it not just tucked away in a corner but right out in front.  I celebrate in our multinational country we can acknowledge the birth of Jesus and not feel afraid.
I love the opportunity to celebrate with family, extended family and friends.  The joy of sitting and sharing a meal and discussing what is happening in our lives.  It encompasses our family bonds and makes us better people.
However you celebrate your Christmas we send you our blessings and pray your day is filled with joy.

Dustin's Home for Christmas

Dustin enjoying ice coffee

Dustin arrived home on WA soil last night at 10pm.  He said he had an amazing holiday in the Gold Coast.  It's not the first time he has been to Queensland, he has an attraction to: Movie World, Sea World, Wet n Wild and Dreamworld.  Unlike the rest of our family he loves the rides, the wilder - the better!  I am glad he had a good time and he is home in time for Christmas.


My Yahava Coffee

He arrived at lunchtime today wearing his Superman T-shirt to spend time with Merv while I rushed around to do the Christmas grocery shopping.  Yes, more shopping!  The day wasn't finished as I arrived home with bags of tins, cans, fruit and veg and a bag filled with fridge and freezer goodies.  Dustin escorted us to his new Holden Commodore and chauffeured us to the Margaret River Provodore Store in the Swan Valley.  I treated Merv to an ice chocolate drink while Dustin bought gifts for family and friends.  We finished with a stop at Yahava to enjoy a freshly brewed coffee and purchase fresh coffee beans.  Dustin, our Barista will make fresh coffee on Christmas Day for family and guests.  Hmm the smell and enjoyment of freshly brewed coffee...


Secret Santa Party

Secret Santa Party

Only three days to Christmas and the tempo is revving up.   Merv was up and ready long before 9am and watching the last hour of last night's Carols in the Domain which I had taped.  I was in the kitchen - peeling, cutting, dicing and packing a range of fruits and salad vegetables.  We were booked for morning tea with one of Mel's best friends and a midday Secret Santa lunch with family.  Full steam ahead and we are out the door just after 10am.  We arrive for morning tea and relax while enjoying delightfully juicy dragon fruit (pitaya), watermelon and colourful red and black grapes.  We chat sharing our passions and hopes for the future.  It is good to catch up, to share food and exchange small gifts.

My Sister's Amazing Christmas Cake

Next stop is our family Secret Santa lunch.  Everyone is already there but I thought ahead and I have already dropped off the presents and put the chicken salad and zucchini slice in my sister's fridge.  There is much hugging, kissing and niceties.  It's good to get together.  We adorn the table with festive eats and my younger sister has cooked an amazing Christmas cake.  It is huge and just like Masterchef she takes a knife, inflicts it from one side to another.  She lifts up the cake and voila it is cooked to perfection.  I love Christmas cake!  Our secret Santa began a month ago when everyone drew a name out of a hat and bought a present for that person to the value of $10.  The bearer remains anonymous and Santa gets the joy of giving.  It works well, everyone has a present and we all keep our bank balance in the black!
The afternoon is full of eating, chatting and reminiscing.  Everyone has enjoyed themselves, Santa has been and gone.  We part promising to catch up again soon.



My Name Forgotten

"How do you spell your name?" he said.  Merv knew the first three letters of my name and then he was stuck.  I kept my answer breezy, hiding my bewilderment and pain.  I was helping him wrap a present for me which he was given (or maybe won?) at the day centre yesterday.  He knew to put it face down on the wrapping paper to ensure it stayed a surprise.   I gave him a gift card and a pen.  I know he can write though it has become increasingly difficult.   I helped him spell my name, tape the tag onto the present and he took the present and put it under the Christmas tree.  He will enjoy giving it to me on Christmas Day.  I later wondered if he forgot how to spell my name because he doesn't write it often or whether Big Bad Harry is just waiting around the corner.  It's Christmas week, I don't have time to worry about it.  My thoughts and reasoning can wait until next year, it's not so far away.
The present is safely under the tree, it has my name on it.

Ramping It Up

Finally the last Christmas present is bought.  Only a few of them are wrapped and under the tree.  My last purchase today was to hire a ramp.  Yes, that's right - a ramp.  Not a regular type of Christmas present and we only have it for one week, but it's the very best present of them all.  Last year when I brought my sister in law home for Christmas lunch it was too difficult to pull the wheelchair up over our front step.  I tried the back step (which is lower) but still I failed.  In the end I had to get her out of the chair and help her over the step.  This year the ramp is our salvation, we will just glide over the awkward step with not a care in the world.  My stress is relieved and I sigh with contentment.  Sometimes we need to take a minute and find out the real reason for our stress.  The dreaded step has haunted my thoughts for weeks. 
On Monday I started ringing around to hire a ramp and finally I found a place called Unicare, originally known as River Abilities in Bentley. It is at least 30 minutes from home.  My stress now relieved, it's time to wrap a few more of those presents!

African Party

Mel in her African attire

I continued with the ongoing Christmas shopping while Mel donned her African outfit and attended her DADAA Christmas Party.   We had found a black dress with an vibrant orange African-style design in a local dress shop.  We stumbled across an elephant necklace in the same shopping centre and bought a matching colour headscarf.  Mel borrowed my African style handbag and wrapped a flashing Christmas necklace over her headscarf.  Lastly she put on her authentic South African beads I bought her in Johannesburg. She looked brilliant and there she was already to go and make an entrance.
DADAA had a 'consumers meeting,' before the party.  I think its fabulous they ask the participants to provide feedback on their program and make suggestions.  I encouraged Mel to enter in and share her thoughts.  After three hours of shopping with a short break for my Gloria Jeans coffee I visited my brother and caught up with his news.  I haven't seen him for sometime and Christmas is always a good time to catch up.  He was happy to see me.  I later visited my big sister for a chat before picking up Mel.  She was full of news and chatted happily about her day.  The shopping seemed like a distant memory as I listened to her and became part of her world.

Time Out

Looking out towards the Dome Café

The weather is cooler, it's a perfect chance to take time out and enjoy a break.   Merv and I took a trip to Sorrento Quay this morning.  We had a task to complete, complimented by a visit to the Dome Café where Merv indulged in his favourite apple pie and ice chocolate.  Our morning drive took just over thirty minutes.  I love approaching the coast and seeing the Indian Ocean suddenly on the horizon.  This morning the cloud hid its usual vivid colour, but the joy of feeling the ocean breeze upon my skin and the whiff of the ocean salt stirs my soul.   We purchased a special present from one of the specialty stores before heading off to the Dome.  We found a table outside overlooking the man made children's beach area.  There was a buzz of voices with everyone enjoying the cooler weather and their café delights. Merv enjoyed looking at the paper with our Ashes-winning cricket team on the front cover. 

Chasms At Christmas

When I am not heard

 

The Christmas season is all about joy, glitter, trees and family fun.  It's not true for everyone.  Even with much cooler weather today there are puddles afoot.  Mel's friend who lives in the same complex as her is having a puddle moment.  In reality it's more of a deep chasm experience when you are not heard.  Mel's  friend confided in me, saying her reverse cycle air conditioner hasn't worked for months.  She had been cold in the winter and now the excruciating heat hung in her unit while others in surrounding units enjoyed cooler air.   I recently took her home from the Carols in the Park and waited for her to get safely inside.  Her key didn't work in the front door and she needed to use the rear entrance.
The units are only four years old and maintenance which was once a priority appears to be non-existent.  She has asked the supervisor regularly to have her reverse cycle air conditioner repaired to no avail.
I have and continue to be Mel's advocate.  Sometimes she becomes unravelled when confronted with  issues.  I take up the slack and sort it out for her.  Mothers, carers, advocates we do this sort of thing.   Mel's friend has no-one to advocate for her.  I discussed some options which may help her, but when I see her again on Thursday I will give her further information.  I know it can be difficult to talk with the supervisor or ring a case manager.  I'll be there for her because her quality of life is important to me.

Carer'sWA



Advertising a Disability Expo in Albany



We all need someone to listen to us and to share with.  Carer'sWA is there for carers, no matter what their concern is. 
Carers WA is a non-profit, community based organisation and registered charity dedicated to improving the lives of the estimated 310,000 family carers living in Western Australia.
I first heard of Carer'sWA in 2000 when I  attended ARAFMI carer support meetings.  Four years later I began work as a support worker and the enormity of carer issues in our community became apparent to me.  I would ring up and order information packs for carers who were seeking help.  I like to think the information helped many.

WA is the only state in Australia which has a Carer Recognition Act (2004).  Community services, hospitals and a range of other organisations which are accountable through accreditation are responsible to implement the Act to retain their accreditation.

Carer'sWA provide not only support but advisory services for all carers including young carers.  Many young carers help a parent or sibling and need support due to the role they play in their family group.  Carer'sWA  provide a break for young carers by arranging fun and respite services for young them.  Carer'sWA also offer carers short breaks for carers and can assist with respite information for the people who are being cared for.
I have been attending a monthly lunch with other carers.  It is good to just get together and chat, whether or not we share our caring story.  It is quite amazing how many different stories carers share.  There are carers  who care for: spouses, parents and/or children.  Each with individual needs.  It's can be hard work and lonely.  Thank goodness we have each other and CarersWA.
CarersWA can be contacted:   http://www.carerswa.asn.au

Flashing Light House

The weather is still 37 degrees Celsius,  we decided to stay home during the heat of the day.  Merv reclined in his lift chair watching the third day of the Ashes in Perth, a five day test cricket series.  England and Australia have played in Brisbane, Adelaide and now Perth.  Australia is doing well.  I can imagine the English players are melting in this extreme heat.  We have on average three heat waves each summer season when the maximum exceeds 35 degrees for more than three days. I have the reverse cycle air conditioner on and we had a lazy day.


One of many Amazing Christmas Light Houses in Perth

With the balmy evenings we make the most of it and drive to our next suburb to view some of the amazing houses which are elaborately decorated in flashing lights and all things Christmas.  Channel 7 holds a competition each year and people flock to the best to marvel at the intricate and elaborate displays.  Most decorated households ask for a gold coin donation which is forwarded to a charity, either for food parcels or the children's hospital.  Tonight as we turn the corner the road is filled with cars parked to one side and the occasional car moving slowly by.  There is only one house which stands alone like a fairy castle.  The whole front of the house flashes and twinkles.  There is a large group of onlookers mesmerised by its fantasy.  The owners say there are 100,000 lights and they have done this every year for twenty one years!  Each year gets a little better.  There is Santa's wishing well and a rotating shower drop, huge stars and Santa and his sleigh flying over the roof top!  It is a marvel to behold and a Christmas joy!

Carols in the Park

I  vowed last year never to do it again.  Merv piped up tonight on the way home and said, "that was a very good idea."
Last year we didn't make it to even one Carols night and I promised not to miss it again this year. Therefore it was a top priority this year and the joy of just being there tonight awakened Merv's spirituality. 

It was a small local community Carols night.  There was a swarm of tiny tots and children grouped together with a horde of extended family groups.  We made a gold coin donation for a Carols booklet and a battery operated candle.  All the proceeds are donated to the Salvos for food parcels.  We set up our fold-up chairs and delighted in sharing our night with one of Mel's precious friends.  It was 40 degrees Celsius in Perth today and threatens 41 degrees tomorrow. 
As the pre-Carols entertainment finished and the anticipated Carols began, the
day had lost its sting and the night air though warm was a welcome relief.  With our fake candles and song book in hand we were soon belting out the Carols followed by favourites, 'Jingle Bells' and 'We Wish You a Merry Christmas.'   A local Pastor involved the children in a rendition of the Christmas Nativity before the fat guy in the red suit rocked up with treats in his sack.
It was inspiring to witness Merv singing along and enjoying every moment.

Celebrating Loss

We're all celebrating Mel's big loss.  No, not the boyfriend,  he's actually quite nice!  Mel has lost 9kgs and that is worth celebrating.  Like many, Mel's story is fraught with twists and turns. 
She was always thin and in her early teenage years under weight.  We would tempt her with 'naughty food.'   Not a smart move as we realised later.  Mel started taking meds for her mental health eighteen years ago and at the age of twenty three she went up five dress sizes in twelve months. 
This is where her story begins.  Her meds increased her appetite and she bowed to it's temptation. She devoured sugary, chocolate covered treats  to satisfy her hunger.  She joined Jenny Craig and went along to her weekly weigh in and consultation with a chocolate bar sticking out of her bag. The consulting staff and I laughed and rejoiced when Mel lost weight.  Before long the chocolate bars won and she stopped weighing in. Since then she has tried;  Light & Easy, protein shakes and a range of pre-packaged meals resulting in little success.  All seemed lost. 


I have lost 9kgs - the weight of this pot!

Mel is just over 160cms and her weight peaked at 100kgs.  Her GP warned her she is at risk of heart attack and stroke, I warned her about hip, knee and foot problems when carrying too much weight.  She didn't care and kept scoffing those chocolate bars, KFC and sugary drinks.
I can't remember what motivated Mel to join Weight Watchers, but I knew weekly meetings would work for her, she needs ongoing structure and encouragement.  She joined at 98.6kgs in March.  It has not been an easy journey and her weight continuously yo-yoed but if we were to graph her weekly results it has consistently gone down. 
I weighed one of Merv's pot plants under the patio
and it weighed as much as Mel has lost.  I asked her to pick it up.  'Oh Mum,  it's soooo heavy', she moaned.  I pointed out she used to walk around with that extra weight on her. The truth finally sunk in; she can see the change in her own thinking and her clothes are looser now.  I am very proud of her achievement.

Holiday Stress

After I retired from work I imagined my life would be a calm flowing stream with resonating sounds of  water birds telling the world of their joy.  How wrong I was!
I really thought Christmas would be a breeze with shopping beginning months beforehand and everything bright and happy as the big day approaches.  How wrong I was!
I definitely have more time but other priorities have robbed me of my organised life and left me with holiday stress.
I have taken time out to observe others during the pre-Christmas madness.  It's not just me suffering from long hours shopping and poor planning.
What is the secret to keep your sanity?  Is it a fool-proof plan or a close knit group of friends encouraging you without stifling your creativity?
I could take my experience this year and rewrite a workable plan for next Christmas, but like a New Year's resolutions I am sure I would have forgotten all about it this time next year!

Graduation



Sunset over the Indian Ocean, Broome WA



I had arranged to attend my niece's graduation lunch today. After three years of study and commitment she donned her graduation gown and received her Bachelor of Nursing degree today at Norte Dame university.  She is an amazing young lady completing most of her studies in Broome and completing her clinical practicums in Darwin, Cairns and the WA outback. 

She said when I spoke to her briefly she would like to specialise in the burns unit.   She recently completed a prac in the burns unit in Darwin.

I was looking forward to celebrating with her, family and friends.  Four weeks ago as I attended Mel's four weekly clinic appointment I realised her next clinic appointment was the exact day and time as my niece's graduation lunch.  I explained this to both my niece and to Mel.  I told Mel I would be there for her and forego the celebration lunch.  

Mel listened to what I had to say and from her heart she said, ' thank you.' 

Shoe String Christmas

I check my budget, it's not so rosy

Christmas in retirement

 Downsize the list - both gifts and food

I check the decorations which deck the hall and living room

No need for something new this year

I check how many bon-bons leftover, hurray one more than I need!

I've trimmed the gift list, sorry if this years gift isn't up to scratch

But there is turkey and ham and a couple of trimmings to buy  

My guests won't be hungry, a simple feast they will enjoy
 

Totalling my grocery bill, I am relieved -  I haven't overspent

I added extras to help feed a family I don't know

I drop off the groceries at my local Salvos store

Christmas is about giving.

No matter how small; blessing others brings joy.

Play A New Game

Today we went hunting, not with a plan and a gun but with the expectation of finding the game we were hunting in our local concrete jungle.  We found a carpark outside the toy shop and battled through hordes of children, toddlers and pursuing mums.  We checked the shelves and checked them once again to no avail. The game simply wasn't there.  We left. I helped Merv back into the car and headed in the direction of Myer. I had been tossing up whether to try Kmart, but the thought of standing forever in line or the possibility of not finding it at all, I simply chose to go to Myer.
Myer has glass lifts where you can view each floor and it leaves nothing to the imagination. I know games are right next to the deluge of Christmas decorations on the second floor.   I looked, we looked together our prey was no where to be found. I called for backup.  A young man stepped in to help.  He used his X-ray vision, smiled and presented us with our prize! Our very first Connect 4!  After saying goodbye to the Tri-ominos game last week, I spent several hours on the internet researching suitable games, activities, even crafty ideas. Keeping Merv entertained and stimulated is our aim and it is gratifying to know we are succeeding.
 

Mis-Information

We recently received a service plan from one of Merv's service providers. Initially I put it aside to read later.   Last Friday I took the time to sit and proof read it.  I hi-lited six errors.  A few of them were grammatical but the rest of them were mis-information for the reader.   Just silly mistakes which provide misleading information to support workers. 
Our regular support workers know and understand Merv but anyone new is faced with receiving wrong information even before meeting Merv.
You never know when the regular support workers will be replaced with an unknown face.  It is inevitable.  People go on holiday, they become ill, they leave and move on elsewhere, never to be seen again.  Clients grieve for the loss of support workers who have visited them over a long period of time, but no one provides counselling.  The new support worker just takes up where the other left off.
I only wish the information provided by both the client and the carer is proof read by staff plus the client/carer before it is provided to their support workers.  

Christmas Pageant

Merv and Mel waiting patiently for the pageant to begin

There were two reasons why we went into Perth for the Christmas Pageant.  Firstly to share in the joy of the Christmas season, secondly because we could.  Since we've been privileged to secure the wheelchair I have found all sorts of wild, wacky and fun ways to access the community and keep Merv entertained.  The pageant was this week's outing.
The biggest problem is parking in Perth.  Many people catch the train, but crowded public transport and wheelchairs don't always work well together.  We left home two hours before the pageant was due to begin.  We drove around in circles for awhile before finding a small carpark with empty bays.  The catch was we had to pay!  I had $30 in notes and $4 in coins.  The parking meter took only coins!  Between Mel and I we scrounged together $7.90 for an all night fee or it was $2.70 per hour.  We took the deal.  We were parked on the river side of Plain Street.  It took over fifteen minutes to push the chair down to the pageant viewing area.  There were thousands of people with their little darlings who ran without caution on the road, weaved themselves in and out of the passing preliminary entertainment and bumped into us whenever they darted pass us!  We came prepared with jackets and long trousers.  Once the sun goes down it can be decidedly chilly in the west.  Mel was glad I had reminded her.  

Santa in his sleigh

We enjoyed our back to basics picnic. with the pageant beginning not long afterwards. We were entertained with the delights of;  the pipe bands, acrobats, dancers, clowns, floats of all types including the one everyone was waiting for, Santa!  There were lots of new floats and groups over the last few years.  After the pageant finished we took the opportunity to visit the CBD and delight in the Christmas decorations including the majestic Christmas tree in Forrest Place.
It was joy to see the kids enjoy their pageant and Merv being out having fun.

Remembering Nelson Mandela

The world stood still this morning as news of Mandela's death was broadcast to all
Nelson Mandela an inspiration to all
A humble, forgiving man, a one time leader of South Africa
A caring man who not only cared but fought
 for all those oppressed in his land
A man who changed his nation and the world
In October this year I stood in the Soweto house which once belonged to him and Winnie
I stood in his kitchen and imagined the hardship he endured to ensure the freedom of his people
I stood in his bedroom and wandered what he thought as he lay his head down to sleep
I read the plaques on his living room walls and knew Nelson Mandela is no ordinary man
I had my photo taken in his back yard,
The place he himself had stood enjoying the company of family and friends


Outside wall of Nelson Mandela's Museum House

Now this house is a tourist museum, a place of  volunteer guides, snapping cameras and unknown friends.
The press is already speculating unrest and disappointment after  the death of their honoured leader.
I pray the good and the justice which Mandela fought and paid for is not forgotten - not now or anytime in the future.






Mum's Christmas Lunch



My Mum

I was thrilled to attend my Mum's Christmas lunch today.  I took Mel with me.  My Mum is 83 and has been living in a care facility for just over three years.  It's not just a care facility, it's Mum's home and she knows the other residents. She is happy to chat with them and sad when they are moved to other facilities or pass away.  They have become an extended family.
The staff throw an amazing Christmas lunch each year, it's the highlight of the year for many of the residents.  The ladies like to dress up and everyone enjoys the change of everyday routine.
Mel and I arrived early and with Mum leading the way with her walker we dropped by the wine and
nibbles corner only to find all the seats were taken.  We finally settled in the coffee corner for a short time before being ushered into the dining room.  The Christmas tree stood majestically in the entrance, all the tables were adorned with white tablecloths and festive decorations.  Colossal bon-bons were at each place setting alongside fanned serviettes, tree decorations to take home and a few sweet treats.  

Mum with Mel and me

The regular staff dressed in formal black with a gold flower on their top.  If we didn't know we would have thought they were hired wait staff. They shone as they ensured everyone was seated and had a drink to begin their banquet.  The lovely ladies busied themselves while serving and made sure both residents and their visitors enjoyed the scrumptious three courses.  The food was first class, the wine crisp and fresh.  Mel enjoyed a couple of glasses of punch.  A local choir entertained us with a chorus of Christmas carols.  I happily sang along.  It made for a perfect conclusion to a most enjoyable time with my Mum, my daughter and the residents of Mum's home.

South Pacific Stage Show

Our famous actress Lisa McCune as Nellie

Merv was excited when he was invited to see the stage show, Rodgers & Hammerstein's  'South Pacific' at the Crown theatre. The HD social group were given twenty free tickets for the matinee this afternoon.  The HD staff carefully balanced the tickets for club participants with the appropriate number of helpers.  Some of us, like myself provided the transport but did not have a ticket.  I had three hours to fill before the play finished. Should I return home or just stay?  Too much driving involved; I can't be bothered to spend sixty minutes on a return journey. Instead I settle myself at the lobby of the hotel in the Crown Casino complex and order my skinny flat white.  I read my book, I research on Google and complete my Lumonsity training on my iPad.  I read the local paper and check out the upcoming Carols evenings while enjoying my coffee and watching the world pass by. I stretch and have a walk.  I talk with the information lady as I am concerned about finding an appropriate lift to the carpark in the basement.  We had to take the escalator up as I couldn't locate a lift.  Though we were extra careful, Merv almost fell before I steadied him.  I decide this place is not disability friendly, maybe others could enlighten me.
I don't bother entering the casino, I am not much of a gambler, I buy the occasional lotto ticket. Finally the time passed and I met Merv coming out of the theatre by himself.  He said he loved the show and the singing.  He didn't talk much about it, but I knew he was happy and seeing him happy makes me happy. 

Harry Deals His Hand

Our Last Game

I wondered when Merv would give up the domino type game,
Tri-ominos.  Each tile has three sides and the goal is to begin with nine tiles and match them with tiles with corresponding numbers until all your tiles are used. It is more difficult than dominoes, it is challenging and competitive. For some time the game has become increasingly difficult for Merv and anyone including me, realised we were no longer playing with Merv but playing for him. This was dilemma for me as I had to acknowledge 'Harry' was dealing his hand. Time for the game to find a new home. My sister valiantly took the game off our hands.  Merv has played the game so often with me, with Mel and his support workers it almost felt like we were saying goodbye to a family pet. Today we played our very last game together. What better way to grieve a loss but to take up a new interest. I've never enjoyed dominoes but this isn't about me, it's about Merv and bringing joy in his life.  Merv needs no help with this simple additive game and he grins widely as he wins over and over again. Harry may  deal a dangerous hand but we just learn to overcome and move forward.

Dominoes to the rescue

The finished game

 



Mel On Display

Mel proudly displays her paintings

Mel is a social butterfly.  She likes to be one of the party and spends considerable time each week catching up with friends.  Like most of us she has a routine and visits her friends on certain days and times.  She is put out when plans change, but she would rather change the day and time than miss out on socialising.
She not quite so keen on her weekly art class.  She attends the DADAA*  class because people, namely clinic doctors and other professionals ask her what she does in her week.  It's not that she doesn't enjoy sloshing around with paints and crayons, it's just not rated as highly as her one to one friendships.
Mel has been attending art class almost forever. She is no Claude Monet or Leonardo da Vinci.  She is Mel. Our Mel who does her best to take a blank canvas and express herself in her drawings and her paintings.  This year she drew and painted, '2 Japanese Owls' and 'An American Eagle'.  DADAA held their annual art exhibition in the Midland Junction Art Centre, which featured 82 artists, including our Mel. 
We had hoped to attend the opening night but Mel chose to go to the movies with her brother instead!  Admittedly we attended last year and there was hardly room to move in the 19th century building.  At least it was easier to move around today and more comfortable for Merv.  We admired every artist's work in the two front rooms and along the passage.  There is some amazing art work.  Mel's friend who she sees every Tuesday also had her painting on display,  she is a very talented lady.  It was inspiring to see such variety in the work displayed. There were numerous models of light houses, wire-shaped Australian animals and tie-dyed fabric with silhouettes of a line of young women.  A number of differing collages hung proudly on the walls.
The sign said do not take photos.  I positioned Mel in front of her two paintings, told her to smile and swiftly took a photo and hid my camera.  Just in the nick of time as the overseer entered the passageway only seconds later.  Parents can be so naughty sometimes!!

*DADAA works across Western Australia to enhance the social inclusion and wellbeing of people with disability or mental illness through participation in the arts

Where Was My Head?

Enjoying the Great Outdoors

Lazy Sunday morning and running late for breakfast.  Merv took his time to get up and sat at the table awaiting his cereal.  He stared at it and looked up at me.  'Sorry' I said,  I had put my Special K in front of him and I sat staring at his Weet-bix.  Simple mistake, not sure where my head is today.
We headed off to Garvey Park after picking up Mel from her unit.  She was happy and chatted about her weight loss, her boyfriend and her endless social life.


Resting at the end of the footpath

Garvey Park is on the south side of the Swan River and has a long winding footpath ideal for wheelchairs.  We arrived to find all the car parks overflowing onto the grassed areas making it a little more difficult to manage the wheelchair, but we managed alright.   I should have checked the website as there was some type of community fair happening with numerous food stalls,  play stations for the kids including a playtime train.  The footpath wasn't as busy and we picked up speed while enjoying the serenity of the river with the occasional kayaker, waterbirds, shady trees, river reeds and grasses.  The temperature was mild at 24 degrees.  No matter the weather we wear sunhats and take water bottles with us.  Near the end of the footpath is a bumpy wooden bridge with room for walkers in opposite directions but doesn't allow for wheelchairs and bikes opposing each other. We appreciated the bikers who waited for us to reach the end.  The bridge was anything but  level and I pushed Merv up the incline and held on with tightly as it dipped suddenly.


Kayaks on the Swan River

 

We sat under the shady tree at the end of the footpath before preparing ourselves for the return over the bridge once again and back to the car.As we drove onto our paving in the front garden I saw the front door was open.  Oh goodness, thoughts raced through my mind;  had we been burgled, was someone inside?  Bravely I marched inside, the security door was open, I looked around.  What had I done?  Yes, I forgot to lock the door and the house had been open for over three hours!  My iPad was still sitting in the lounge, everything was exactly as we had left it.  I just forgot to lock the doors!  I have done that twice before, but many years ago.  Just like the cereal, where was my head?