Harry Underfoot

It rained all night and cleared up during the morning.  I was pleased as I am driving all the way to Mt Claremont and I expect we will do the return journey in peak hour traffic.  I will turn on the radio and keep my weary eyes glued to the road, there are always impatient and reckless drivers to be wary of.
Mel never did get her driver's license, she tried a couple of times but her medication was always her downfall.  Merv stopped driving in 2010 when he suddenly became ill.  I've been driving since I was twenty-one, it took me five times to bribe (maybe terrify) the instructor, but finally I was granted my license to brag about and flash around.
I am now the nominated driver for everything, no matter how long or short the journey.  I am a good driver but I jump at the chance of being chauffeured somewhere.  If someone offers I always agree!
Today I took Mel to Neurosciences and had her 'shaking' assessed.  The specialist was thorough and Mel reported he was very nice and considerate.  Just when we thought big bad Harry might wake from his slumber, we were relieved to know he is just underfoot.  We were both delighted to know her shaking isn't HD related, possibly a side effect of her ongoing medication.   It was a time to celebrate and we decorated our plates with huge sweet strawberries and enjoyed!

Open House

More than three years ago I would rush off to work and promise to pick up and clean up when I got home.  It didn't matter that the dishes weren't stacked in the dishwasher, the clean washing not folded and put away and the bed unmade.  It was never a problem because there was no one except us to see the mess.  Three years ago all of that changed!
When Merv became too ill to stay at home by himself I changed my hours from full time to three days a week and we arranged for support workers to share his day with him.
Overnight the beds were made, the dishes stacked,  the clean washing sorted and the ironing put away.  The kitchen was immaculate and Merv's lunch and snacks already for him in the fridge.  I was exhausted, but my house was presentable.
Every Wednesday, Thursday and Friday and the occasional Tuesday it's always the same; planning ahead, rushing around and getting the clean up done.  It is nice to have a representable house which keeps me on my toes, but our house is no longer our own.  It is open house to support workers, community care assessors, speech pathologists, occupational therapists and a variety of other professions who assist Merv in his HD journey.  I am glad there are professionals and helpers in our journey but I would love to be just my own 'not so tidy'  self whenever I want.

Keeping the Rhythm

People all over the world every day walk, run, jog and play.  It's just part of life whether it's part of the job or part of a fitness regime. Even I work out 30 minutes on my treadmill most days.
It's different for Merv.  He spends more time than he should sitting and in the last three years he has never suggested we go for a walk.   Whether the wind is chilly or the sun beats down, all that is needed is a patch of blue sky and the rain clouds at bay and you will find us walking in the local park or taking a stroll around the block.  Our block takes about twenty minutes at Merv's not so fast pace.  I hold his hand and ensure he stays on the path.  A slip or a slide can so easily result in a fall.  Merv walks with a swagger and his feet don't always do what they should do.  It is challenging to keep walking but we are so chuffed when  the walk is completed and we celebrate with a cool glass of water.
The challenge is not just the walking to maintain a basic level of fitness, but to find inspiration along the way.  In the park the local cricket clubs play in the summer and the various footy clubs in the winter.  We have the privilege to stop and watch and chat about them later.
We have driven to Kings Park in the city, the beach (concrete path areas only),  short walks by the Swan River,  Whiteman's Park and a variety of parks around Perth.  Everyone of them has a story to tell and we have the pleasure to revel and treasure each of our adventures.

Forget to Remember

I spoke with Mel late this afternoon and she was telling me all about her boyfriend's birthday party at a local restaurant.  She told me who was there, what she ate, all about the surprise ice cream birthday cake.  She was very happy and then as an after thought she said;  'Oh Mum, I had an asthma attack at 3 o'clock last night!'  She simply said she had her puffer and within the hour she was feeling better.  I was flabbergasted!  We had spent a couple of hours with Mel this morning and there was no mention of the attack.  Mel was a chronic asthmatic and had been in hospital over 40 times by the age of 12, twice in ICU.  She had an asthma attack last August and spent two days in the local hospital.
It is not the first time she has 'forgotten' to pass on important information.  It seems to be a common problem!  I know I am far from perfect and sometimes find myself forgetful. 
At times Merv or his carer have forgotten to pass on important information.  It has been; important appointments, people wanting to visit, maintenance problems, information from agencies or medical departments.  Only sometime later does the forgotten information surface and the journey to either correct it or reschedule commences.  It is a journey which could easily have been avoided.  Merv has a communication book which the carer writes down information from the service provided, but this is never fool-proof.  Merv's communication skills are now limited and he may want to tell me something but will choose not to.  Not all of his words are clearly understood now.  I am buying   Merv an i-pad for his birthday next month and hopefully the communication programs will be helpful. 

Hairy Bush Bites the Dust

Thunder and lightning shattered the peace of night and kept us awake at 1am.  Eventually we returned to the slumber of sleep awaking to pouring rain and a grey painted sky.  There seemed there would be little chance of it clearing early.  The tree lopper was booked today and arrived just after 10am.  Merv found comfort in his favourite chair in the lounge while we busied ourselves on our mission.  Ron and Daphne who have helped us so many times in the last few years came and helped us.  The tree lopper bought along his two young sons who worked hard all day.  I fed them banana cake and chips.
We were altogether committed to removing the ever-growing climbing bush which had taken claim
of its territory on our back fence.  It has nice orange flowers, green fringed leaves and grows all year round.   It must have it's own survival plan for we have never given it a drink  but still it refuses to stop its quest to reach the sky.
Not only is this no name fence hugging climber destined for a major haircut but hairy bush is marked for far greater destruction.  The thought being rather pleasing.  I will no longer need to book a bi-monthly haircut for it.  It is destined to be a stump sunning itself and providing a safe haven for insects and other small garden inhabitants. A tear I cannot shed.
The climber stood its ground and five very long hours later was shaved and manicured.  Our arms ached from shifting the branches from the back fence to the front verge.  The local city council has a garden refuse pick up mid-August and our verge was piled high with not one centimetre free of refuse!
Then it was time for hairy bush.  A hush was heard and the pain felt as the chainsaw went to work, removing awkward off-shoots one at  a time.  Silently the short woody trunk fell and the little stump sighed and looked for the sun.  The sun shone and gave us a little relief from the murky grey sky.
I paid the tree lopper, gave the boys a gold star each and presented them with a home made banana cake for their family.  I thanked Ron and Daphne.
I had been busy all day, moving branches, providing food and drinks for Merv and all the helpers.  I ensured Merv was happy watching some good movies and checked on him frequently.
This morning I told Merv I miss him helping in the garden, we used to work so well together with him doing the heavy work.  He said he also misses working together.

Sharing the Smiles

It is stormy today in Perth and I successfully dodged the showers and howling winds to attend a local carer's lunch.  It is a get together of men and women of all ages just enjoying a meal and catching up with friends and making new ones.  This is the third time I have joined the group and I am always amazed and challenged by the carers and their stories.  I sometimes feel I am in a bubble, spending time centred on HD and oblivious to the world as it is and its many challenges. 
Today I chatted to a lady whose two children have a disability.  A lady who cares for her mum and many caring for their spouses.  The disabilities discussed were not what I had expected.  The range of disabilities is so very varied and not as obvious as we often expect.
The very best part of the lunch is listening to people's life stories; where they were born and grew up and their life journey.  I love to hear their stories, see their photos and immerse myself in a little part of them, even for the short time we share together.
During our lunch chatter we share together lifestyle tips and even favourite recipes.  I am already looking forward to the next lunch in August.

Mum and Daughter Day

Thursday is the day Mel and I spend time together.  Merv and his carer have their own plans for the day and I am free to have, 'Mummy and daughter,' time.  We have decided every fortnight we wont do any of Mel's housework and tidy up, instead its shopping and fun times only.  Today is our fun day.  Mel has received a right royal invitation to her new boyfriend's 40th birthday this Sunday and today we shopped for her new outfit.
Merv and I had started some preliminary shopping on Tuesday and asked for a fabulous looking dress to be put on hold for her.  We wasted no time today and Mel tried the dress on only to find it was too small and didn't suit her.  Time for plan B,  we both surveyed the many tops; lacy, dressy, stripy, kaftan style and an assortment of  skirts before she headed off to the change room. Decision time was spent time admiring and parading the tops for all to see.  Then there was the YES pile and the NO pile and after a bit of bantering Mel chose one which looks great; not only for the party but it is easily worn for other occasions and wont be lost at the back of the wardrobe.  The skirt chosen was black  and smart.  She looked fantastic.  Then to accessorise. What seemed like hours were spent checking every shop for a long silver chain and holeproof black tights.  We finished our Mummy/daughter day with lunch and a relaxing walk along the Swan River in Guildford. 
The joy of being a Mum and having a little down time to delight in it with a fabulous daughter!  Photo of Mel with her permission

Best Choices

After two weeks break from college it was time to return.  I was feeling rather lethargic and tossed up whether to play hooky or not.  The thought of curling up on the couch and reading my book, watching a movie, chatting on the phone all sounded so much better than two hours of class.  I checked the weekly outline and was not encouraged by this week's topic; Scriptwriting.  I can't imagine myself as Stephen Spielberg or Baz Luhrmann. 
I tried a different approach and tried talking myself in believing the journey and the social interaction would be of benefit to me.  A cherry on the top sweetener a freshly brewed coffee after class.
I continued with my designated homework before half heartedly driving to the college.  I arrived to find only one other student had arrived but another student joined us a few minutes later. 
Surprise, surprise I thoroughly enjoyed the session.  We learnt about scriptwriting but we also discussed recent movies and why we chose to watch them.  We discussed who the protagonist and antagonist were and even had a go at writing a short scene.  It was unexpectedly fun.
I have found life a lot like this.  When I think the path I am on isn't working for me, I sometimes make the wrong decision to opt out.  I hope next time I have this dilemma this scenario will spring to mind.

Hidden Treasure

Mel  lost another 0.2kg today.  She was ecstatic when her Weight Watcher's leader showed her she has now lost 6 kgs since joining.  It was lovely to see the joy in her face. 
We took time out afterwards for a 30 minute walk and drove down near the river.  I wasn't sure whereabouts we were headed and I just stopped the car at the end of a cul de sac thinking we would walk along the adjoining footpath.  It was then I spied a path leading into the bush area and what better thing to do than to take our chances and follow it to wherever it could lead.   
We were treated to gentle grazing horses in paddocks on both sides of the path.  The path continued over a rustic wooden bridge and suddenly came out onto the road.  For no apparent reason we followed the footpath to the left and decided to retrace our steps at the sign post in the distance.
The surprises kept on coming.  Just pass the sign post was another sign on Stirling Crescent advertising a Nursery (the plant type).  Curiosity hastened  me to find out its name.  It read, 'St Barbe Grove Nursery,' and we later found out it is the headquarters of Men Of The Trees in Western Australia.  As we took the little turn off to the nursery sign a tall lanky man came striding down the driveway carrying a rather large sign.  We were soon engrossed in conversation and he was putting out his sign advertising hot coffee.  He explained it is a brand new venture and he hopes to entice new customers.  He stood holding his sign while we chatted.  I asked if he was open on Sunday morning, as we like to visit the Dome Café, but it is always crowded and never personal.  I could see ourselves enjoying cake and coffee in his secluded nursery.  He considered this and said he would entertain the thought. Already I was planning when we could visit next week and as we retraced our steps we discussed the best day to try out his new venture.  Life is an adventure and one man's plans can result in pleasure for many.  We like to support local business.

Time is of Essence

Change is part of life but we don't always embrace it.  Merv and I had a visit from the speech pathologist today.  She came to watch Merv eating his lunch and assess his swallowing.  He had a choking episode a couple of weeks ago and I asked for an assessment. I needed reassurance I was doing everything right, including providing Merv with the food and drink which cause him the least  possibility of choking and how to assist him when he chokes.  Thankfully we are doing everything right.  The young lady who visited is going to write up a swallowing care plan for Merv which will be helpful when he goes into respite.
In the past month there have been more than a few times I have been unable to decipher what Merv has said.  I have asked him to repeat it, believing it must be my hearing.  Instead I found I needed to ask him to use different words to talk to me.  He is frustrated and so am I.
I had hoped by now I would have purchased an i-pad for Merv to use. There are plenty of fabulous communication apps available and help in learning to use them is available from the speech pathology department.  Like lots of things in life, it's on my list of things to buy.  It was when my doctor suggested we purchase it now to allow Merv to learn to use it, while learning new things is not too hard for him.  When I contemplate this, I realise it is not the money I am loathe to part with, it is acknowledging his HD is taking a stronger grip.  Big Bad Harry raises his ugly head once again.

Emergency Plan

Just before New Years Eve in 2011 Merv and I travelled to Auckland New Zealand and cruised around New Zealand returning to Sydney after visiting Melbourne and Hobart.   We spent a day exploring Wellington, the capital city.  It was January 1st 2012 and a light splattering of rain kept our umbrellas ready for use.  The air was cold and we were well rugged up.  We took the tram up the steep hill to the Botanic gardens and enjoyed the view of sprawling Wellington below.  We later visited the museum and learnt how New Zealand is positioned on the margin between the Pacific and Australian tectonic plates, leaving parts of the island very seismically active.
We visited New Zealand nine months after the horrific Christchurch earthquake.  The cruise ships  anchor in the bay of Akoroa due to the damaged wharf at Christchurch.  Today I heard there has been a  strong 6.5-magnitude earthquake in Wellington and my mind filled with memories of our visit and despair for people who have suffered loss. 
I began to explore what we would I do if an emergency happened to us?  What if our house was unsafe to live in?  Where would we go?  We have spent a deal of money renovating the house and installing a disability access bathroom and toilet for Merv.  The thought of how would we overcome this provided me with little comfort and no immediate answer.   I have not considered this before and realised we don't have an emergency plan!  We  have house and contents insurance, but living somewhere else before our house was made liveable again would create all types of issues, especially with Merv's mobility.
Hopefully it will never happen but emergency plans are made for a reason.  There is no time like the present to start a plan.

Just Chilling Out

It's cold today, only 17 degrees maximum but we needed to get out and enjoy a day without appointments.  We began the day with morning tea at Midland Dome Café.  Merv's delight at the Dome is always a big chunk of warm apple pie smothered with cream and a hot or cold chocolate drink depending on the season.  Mel delights in English Breakfast Tea and my treat is always a skinny flat white coffee.  Mel has now lost a bit more weight and we decide to share a serve of fruit toast and marmalade.  We kid ourselves the sugar in the marmalade will warm us up.  It was 2.2 degrees at 7:30 this morning and it doesn't feel much warmer now.  We enjoy our treat and chat, catching up on Mel's news and reading a bit of the Saturday newspaper, which are free to read by the customers. 
Yesterday I bought fruit and veg only to find when I returned home I had left a bag at the shop.  I was so thankful today to find they had kept the bag in the fridge for me.  It's a good thought that my store's customer service includes honesty and thoughtfulness.
I am tired of staying at home and we planned a chilly afternoon walk at Whiteman's Park.  A bold move was made to have afternoon tea at a picnic table, hopefully bathed in sunshine, huddled in coats and scarves and enjoying the pleasures of the park.  All went to plan, we enjoyed our walk around the park.  We had planned to visit the tiny art gallery but it was closed.  Melanie had her art on display there several years back and now we visit every time we visit the park.  Instead we visited the pottery/craft shop, holding on to Merv's arm to ensure we weren't responsible for anything broken.  The shop was full of Asian tourists taking photos of their babies and each other.  A large sign in the shop stated that NO photos should be taken inside.  I eyed the owner sitting in the corner and we grimaced at each other.  Happy tourists buy more or maybe nothing at all?
Afternoon tea time arrived as the sun hid behind the streams of approaching clouds.  We found a picnic table with rays of sunlight dancing upon the table-top.  I poured the coffee and milo and we sat with our scarves wrapped firmly around us munching on homemade banana cake and chopped up fruit.  Our highlight of our tiny picnic was a visit of the bright green backed Twenty- eight parrots.  These parrots are known as Twenty Eights, from their contact call - a whistled 'twen-ty-eight' sound.  They are also known as Australian Ringnecks. They are so tame they flew onto our table to share our cake and fruit. They are prolific in the park, flitting in and out of the eucalyptus trees foraging for seeds and crumbs.  It is good to take a little time out to have a little fun.

What the Doctor Said....

I am not really a yo-yo person,  I believe I am mostly in control of my life and what is happening in it but today I was left questioning my belief.   I know as a carer I need to look after myself first to ensure I am healthy in body and mind to look after my loved ones.  I started my day with my overdue mammogram.  All done, very easy.  Then off to the GP for a script and advice about malaria tablets when I holiday in South Africa in early October.
We were chatting like old friends, for I long ago adopted her as my one and only doctor and confidant. I mentioned I would know when it is time to step aside and allow an agency to provide personal care for Merv and her reply was not what I was looking for or expected.  She simply said, "No, not everyone does. stepping aside will free you up."  I smiled and replied I'd rather not think about it and changed the subject to other light-hearted things.
Her answer ricocheted in my mind throughout the afternoon.  Another issue to consider, to weigh up, to chose to act on or to add to the, 'too hard basket.'   I thought having been a support worker for a variety of agencies was the obvious answer.  I know I am not comfortable giving up what I believe is my right in Merv's care.  Now I am no longer confident that I will know when it's time to step aside, but I do know I need to look outside the box and see a bigger picture.

Creative Escape

Going to work used to keep me busy both in mind and body. It kept me from mischief and boredom!  Since I retired I have started this blog plus creative writing classes and reorganised by days to include people and tasks I had previously neglected.  We all need a hobby to keep us inspired but no more than people who care for their loved ones.
I had the pleasure of sharing with other carers who immerse themselves in art.  I love to share their stories and enjoy their creative expression.  Each canvas reads aloud their story and the intricate shadows of their pain dance beneath.  Colours of fire explode tempting both artist and the viewer to escape into a place of peace and serenity.  A place so far removed there is no pain.
I wish I had this gift, a gift of expression and escape.

Socially Disadvantaged?

I spent the day with Melanie, We began our day visiting her dietician. Mel has lost six kilos since she joined Weight Watchers 5 months ago.  Its been a yo-yo of a journey but she going so well now and we are all rejoicing in her loss.  We shopped and cleaned together, we chatted and shared jokes only stopping to share lunch together. Six hours later it was time for me to return home and I slid into the car and drove home to put my feet up.  I was tired and knew a little rest would perk me up.

While I rested I thought about yesterday and some of the questions the Supervisor had asked us.  Her first questions to me was, "Do you feel financially or socially disadvantaged?"  It wasn't so much of a general question, it was a question referring to my role as a carer.  It was a question I would have liked to have some time to chew over, to weigh up the pros and cons.  I was taken off-guard and simply answered, "no."
I reconsider the question and there is no doubt about it the answer should have been, 'yes.'  It would not necessarily be for the expected reasons for a survey, but it is simply for the obvious.
We do not have a mortgage and we do not owe anyone money but yes I am financially disadvantaged.  I am unable to pursue a career and earn a living.   I had a very good job which I resigned from to care for Merv and Melanie.  Not a suitable answer for her survey but it's the reality of my caring role.
I spend time with Mel and other family members, some friends, attend a creative writing group and join in two carer's support groups each month.  I have some social interaction which possibly means I am not socially disadvantaged. 
I am unable to book a night out with the girls without arranging a family member or carer to look after Merv,  I am unable to shop for clothes unless Merv has a carer present or is attending one of his groups.  We go to the shops together to buy a few groceries or to purchase a few items from other shops.  I am not free to choose.  The argument by others may simply be they aren't available to socialise either as they work and have their own family commitments. 
The question reverberates in my mind; am I or am I not financially and socially disadvantaged?  There is no straight answer.  A carer's life is a mixed bag.

Mystic Winter Storm

Its mid-winter and today we were buffeted with 100km winds and downpours you would only expect in the tropics.  It was also the day Merv had a doctor's appointment at 10:30am  in Mt Claremont 30 kms east of us and another appointment in Mt Helena 33 kms west of us.
I steeled myself for battle.  Armed with necessary equipment such as umbrellas and coats we headed off to Mt Claremont.  It is a trip usually through Perth city, but with the poor weather and the train line currently not in use due to major renovations, I bypassed the city and travelled through the suburbs, pretending it was a scenic drive.  The sun came out, the rain stopped and we had a pleasant drive.  We arrived early, most unusual for me.  It was fortunate for us for only a minute later the heavens opened up and the rain poured with great velocity.  The wind joined in as on cue howling and sending anything loose spiralling through the air as missiles against cars and buildings.  After the appointment we stepped outside to find the sun shining happily and we drove home for lunch.
A storm was predicted at midday and the raindrops  splattered menacingly as we left for Mt Helena.  Neither of our destinations today are really mountains,  they could only be considered hills.  Mt Helena on the other hand is reached via Greenmount Hill, a  relatively steep 3 km stretch of Great Eastern Highway.  The views of Perth on the descent are astounding.  On a clear day with the sun rays on the city you could be mistaken for viewing part of heaven.
As we passed through Midland and up Greenmount Hill the rain's intensity mounted,  I had the windscreen wipers working overtime, the heater on to demist the windows, my mind centred on the curving road and my eyes assessing the danger.  I counted six oil tankers on the ascent, all of them to be passed safely as the wind and rain showed no signs of ceasing.  It is exhausting driving.
Finally we made it to the little cottage.  Yes the rain stopped as we pulled up!
Merv is booked to stay at the cottage for 2 days next month while I attend a carer's retreat.   The cottage was old and reeked of history.  The hills has its own captivating mystery and it is steeped in the walls of the cottage.   We toured the quaint cottage.  As we sat answering questions the rain and wind continued its assault outside but as we left the rain had stopped and we hoped it would be kind enough to wait until we arrived home.
I set off down Great Eastern Highway aware of the deep descent ahead, the raindrops splattering on the windscreen and suddenly we were caught in a deluge.  The wipers were back to overtime and a convoy of large trucks and tankers were in front, behind and beside me.  The huge trucks hitting the water on the road created walls of vapour which looked like smoke from a smoke machine,  imitating a scene from an action movie. The only thing real appeared to be these great beasts moving at 80kms per hour. They sped ahead  ready to descend the daunting hill.  My mind in gear, my hands firmly on the wheel finally we had descended the hill and the sun came out, the rain stopped and we continued safely home.
Being a carer is a commitment come rain, hail or sun.

The Smile

I rarely turn on the morning show but this morning I tuned in for 5 minutes and was rewarded with a beautiful story which touched my heart and yearns to be shared.
A young man has started his own, 'Happy Monday,' video blog on SMILING.  He wanted to know what makes people smile.  He was surprised but you and I wont be.
He has travelled all around Australia asking people of all ages, cultures and career choices.  He reported the things which made people smile;

• Spending time with family and friends
• Spending time in the outdoors
• Surrounding themselves with positive thinking people
• Taking time to enjoy whatever they do

No one mentioned money, wealth, social status or career. 
Whether we spend most of our day using technology the things which make us smile, which is our happiness are the basics of life.  They make us smile, they make us happy.

As a full time carer I know laughing about the things we can't change helps us through our journey together.  When life becomes too difficult a smile, a hug, a happy thought goes a long way to a better life.

Vouchers and Freebies

The first, 'Buy one, get one FREE,' I can remember were the MacDonald's and Hungry Jacks burger coupons in the 80's.  A plus for us with two small children.  We would treat ourselves to burgers, sundaes and thick shakes and save money with the deal.  
We no longer buy burgers with or without coupons but the number of offers available have escalated and include almost anything you can think of.
Only a few years ago I had a range of  reduced priced offers tempting me from my inbox.  There were Groupons, Scoopons and Our Deals offers.  All of them offered; cheap breakfast, 50% off meals, holiday packages, movie deals, beauty, massage and recreational offers too good to resist.  I was working and took advantage of a variety of these offers, even purchasing vouchers to pass on to family and friends as gifts and to simply say, 'thank you.'
Merv had been working for the same business for 30 years and was given two years paid sick leave, which was less than his regular take home pay.  His job involved shift work and a shift work allowance, but we managed well.  I rearranged our finances ringing up our utilities, many of them surprised me by offering us cheaper alternatives.  We trimmed down our 'wants list,' and I decreased my working hours from full time to 3 days a week.  We were managing ok.
Then it just hit me.  What was I doing?  I was being tempted by all of these deals, most of which I just didn't need.  Time to take action!  I unsubscribed from them all, just like that.  It was as good as cleaning out the wardrobe!  No more temptation.  Now when we go out for dinner, we chose where we want to go, not the coupon. 
Today we went to the movies and saw, 'Superman, Man of Steel,'  and I used my new Ace Card.  We like the movies and maybe we go once or twice a month, but the deal is too good to refuse.  For a small annual charge we get into any Ace movie, any day. any time for $10 each.  A few dollars more for 3D and a good deal on Gold Class.  We arrive early and secure our seats which are on the same floor level, no steps to contend with.  Life is good when you make the rules.

How Money Impacts Us

Merv and I met early in 1976.  We had never met before, but our family stories share a parallel.  Both our families are working class.  My father was a plasterer and his father was firstly a French polisher and later a factory worker.  Merv has 2 sisters and 1 brother, I have 2 sisters and 2 brothers, not a big difference.  My family were 10pound poms and his 3rd generation Australian.  Definitely different histories there.
Merv's parents bought a war service home south of Perth in the 1950's and later bought a modern duplex in a suburb close by.  My family lived in South Australia and moved to WA in 1969.  I can remember moving 5 times before I left home at 18 and there were always money issues.  Yes more differences. 
Then the parallels come together as one, both set of parents ended up treading the very same path.
Cutting a long story short both our parents had a house each and through a series of circumstances and possibly not always good decisions both parents were left renting with no 'nest egg' to rely on.

When our children were young, my older sister said she wanted only to be able to retire in her own little cottage somewhere.  This has stayed with me; to be able to own a bit of real estate and not have to worry about rent or mortgage.
Only in recent years has this become a possibility.  I am not always good with money and I wish I was more disciplined, but we were blessed when Merv's disability insurance and super came through in 2011.
I stood holding the cheque which was about to change our lives.  I said to Merv, "Ferrari or mortgage?" It never really was a question.  I had the discharge forms printed, filled in and posted that very same day.  When I retired this year I paid off my credit card and for the first time in our married life we have been debt free.  It is an amazing feeling, but I know I am blessed and I am very grateful.
I often think of fellow carers and pensioners who continue to pay rent or ongoing mortgage repayments and the hardship it impacts upon them and limits their savings ability.  It can happen to anyone, it happened to our parents.  I hope I have the opportunity to help others as we have been helped.

 

Time is of the Essence

I retired from my community services job over 3 months ago.  I was a coordinator looking after 60 volunteers for a not for profit service provider.  I loved my job, but it was time to leave to care for Merv and join Mel in her journey of HD testing.  Unfortunately her results were positive, but it is part of her journey now and she knows I am there for her.
When I was working I had enough respite hours to leave home, work all day and return home.  I worked three days a week.   We were fortunate to receive respite of 11.5 hours a week free through DSC.  We paid PHCS for the rest of the in-home respite at  $8 per hour, which totalled $160 per month.  Merv also attends the HD group for 4 hours and a local day centre for 6 hours a week, which kept the in-home respite affordable.
Since I retired his free respite has been reduced to 10 hours a week and the carer arrives at 9am instead of 7:30am, which keeps everyone happy.  It is less stressful setting the alarm later and being ready to head out at 9am!  No longer to go to work but either my time is for Mel's never ending appointments and unit cleaning or an appointment of my own doing. 
This is where my dilemma commences.  During my working life (three years since Merv's became ill) I worked all day and drove home at 4pm, my erratic driving often mistaken for a Grand Prix practise.  I had no free time to shop, to browse, to consider, to buy.  I would have to arrange for Dustin to come after work, or go out during the weekend and Mel was stay and keep Merv busy.  I once - yes just once, took a sickie. 
My two week respites were like a trip to another planet.  I shopped all day because I could, I arrived home and sat in front of the TV and ate prawns and salad.  No need to think about Merv's showering, dressing and medications.
Today Merv went off to the day centre for 6 hours and I was free.  What did I do? You wont believe it but I cleaned out the walk-in pantry. It took all day.  It was boring.  It was hard work.  I could have done so many other things but the pantry now looks and works so well.  I am so happy. It is such a relief!  It hadn't been done for over two years and that was just a quick sort out, today was the real deal.  I am so relieved I finally had time to get it done.  Time, I once took for granted.

Our Retirement Story in our 50's

Upon reflection today, I remember clearly saying to Merv we should have our retirement while we still worked.  We both lived deep in denial, hoping and praying that the grim reaper which poses as HD would bypass us while our heads were buried in the warm sand.  Just a little bit of me, screamed, "Go have fun, see the world, go live life like we should during retirement."
We had never travelled outside Australia until 2006 (I arrived in Australia at the age of 6 with my family from the UK).  It was our 30th anniversary and we booked our first cruise on the Gemini, just to try it.  We loved it.  We were upgraded to an ocean view cabin and we were treated like royalty.  We stayed in Singapore and cruised to KL, Penang,  Langkawi and Phuket.  In 2007 we cruised to the South Pacific from Sydney.  Our kids came with us to celebrate my 50th birthday.  Mel was terribly sea sick but it didn't stop us having a great time.  In 2008 we spent 34 days in beloved Italy.  As we arrived in Venice by water taxi I stepped from reality into a storybook.  Australia seemed a thousand years away.  We loved and breathed Italy.  We cruised on the eastern side to Olympia, Athens, Santorini, Corfu and Dubrovnik.  We spent the better part of the day walking within and on the walls of the historic walled city.  Back to Venice and we travelled like the locals by train to Florence, Montebello and later to Rome.  We took a bus tour to Pompeii and from Sorrento we travelled to Naples by water shuttle and cruised on the western side to Sicily, Majorca, Barcelona, Marseilles, and Genoa.  An amazing and breath taking journey.
In 2009 as Merv's health began to take a dive we travelled to Shanghai by air and took a 5 day cruise to Japan, returning to complete a 12 day tour of China.  We walked the Great China Wall twice, we were awe struck by the enormity of the Terracotta Warriors in Xian.  We cruised upstream the Yangtze River for 4 days and witnessed the lives of the local people.  We finished our holiday with 3 days in busy Hong Kong.
Merv's health crashed in May 2010. A year later we holidayed for 5 days at Rottnest Island (a short ferry ride from Perth) but at the end of 2011 we threw caution to the wind and took a 2 week cruise from Sydney to New Zealand stopping at 4 ports and encompassing both North and South Islands.  It was freezing for January but beautiful scenery and warm people.  We booked a disability cabin which helped and he was still walking relatively well.
Merv said only the other day he would like to travel more.  I looked at him knowing his travel is more than likely to be local and at best within Australia.  The days of the long airport wait and queues are now associated with stress rather than pleasure. 
My holiday breaks without him are now solely for rejuvenation.  It is with joy I am able to return with a peaceful mind and heart.

Less of a Woman

We continuously hear how high the percentage of obese or overweight people in Australia is.  It is the same in many other western countries.   Melanie is overweight mainly due to her mental health meds.  At the age of 22 she went from size 8 to size 18 in twelve months.  The meds increase her appetite.  Her hunger demands her attention and she submissively feeds the brute.  She has tried Jenny Craig, shakes - every flavour, every brand, Lite N Easy and for the last 4 months Weight Watchers.  Mel has finally lost 5kg but its an ongoing yo-yo ride.  Some weeks its a star on her WW card and other times bring tears, grief and unbelief.  At least she has lost 5 kgs.
I have my own weight demons.  During my younger years I wore size 10 clothes and never had to worry about dieting.  Then I had children and the jigsaw puzzle of life changed the picture view.  I had to begin watching what I ate, how I could exercise, which was mainly walking and aerobics on video/early morning TV!  I began my own yo-yo experience.  I would lose weight before going on holiday to allow me to each anything of choice while away.  I wouldn't lose it when I returned home.  Only a few months before the next holiday would I then begin to lose the weight.  The pattern had  evolved. I did the same last year when I went to Bali but lost only half the weight I wanted to.  When I returned I put in place a plan to lose all the weight.  I bought a treadmill in 2009 when I had to start work at 7:30am and it was too dark in the morning to walk.  I use it at least 6 days a week and think it helps.
Dustin had been on the Body Trim lifestyle program and he lost 10kgs.  I was amazed, it worked!  Just like a trooper I went ahead and watched the DVD's he had borrowed from a friend and did some internet research.  I lost another 7kgs. 
After losing the 7kgs I hit on the idea of following Mel with her Weight Watchers journey and it helped her when we discussed what we were eating and how many pro points we had left and how we could use them all up.  Essential to have fun eating but still stay healthy, it has been successful.   I go back on the Body Trim program every now and then, especially when my weight starts to creep up.  The two programs work well together.
Improved health as I get older is the other reason why I have decided to lose weight and keep it off.  As a carer I need to be well to look after Merv and Mel.  If my health suffers they also suffer.  Back to the treadmill and the tuna and salad lunch!

Robin Hood Syndrome

Just another day.  This afternoon Merv choked on his afternoon tea.  I was busy in the kitchen and Mel and Merv were enjoying fruit, weight watcher's biscuits and a cup of tea.  The silence was suddenly shattered by  gasping and spluttering.  I don't remember exactly what I was doing I only remember I sprinted to the table to see Merv gasping for breath and thrashing around. It took only a few seconds to bring him back to a place of calm and reassurance.  Merv is encouraged to cough, when this happens, which assists in clearing the airway and encourages regular breathing.  Merv, the trooper not only finished his cuppa but his choccy biscuits also.  It was if nothing had happened.  Mel was totally unperturbed and just continued with her afternoon tea.  I have a, 'high alert,' button injected under my skin!
Robin Hood is renowned for stealing from the rich to give to the poor.  He didn't have the internet to check on a person's credibility, he just knew who needed the money and who didn't.  Its different today.  I have spent a couple of years ridding ourselves of a decent sized mortgage and a rather overblown credit card bill.  I am now debt free and have enough emergency money in our savings account to prevent a financial blow out.  It feels good.
The dilemma occurs when I receive what many call the, 'the begging letters,' from a multitude of charities.  Requests for donations for overseas disasters, famine, medical emergencies, war torn countries, environmental, animals, disability sports and the list goes on and on.  I have three charities I give to regularly but am I doing the right thing?  Should I add or deduct a charity?  Do I know if these compassionate pleas ensure my money goes to those in need or is too much going towards administrative and other unaccountable costs? 
When I holiday in South Africa in October I am visiting a game reserve and the website encourages tourists to bring goods to help the locals.  It lists suggested goods -  everything from crayons for children to personal women's items.  I am looking forward to doing just that.  It is the, 'handing it over,' which is so much more personal and almost guaranteed to be given to those in need.  That must be the same buzz Robin felt when he handed money to the poor!

Too Busy to Worry

Today I dyed my hair, paid my bills online, jogged on the treadmill for 30 minutes, got Merv dressed and ready for breakfast and the new day,  hung out washing, washed the floor, cleaned the bathroom and toilet, cleaned the kitchen and made a refreshing coffee all before I left with Merv to visit my Mum at 10:30am this morning. 
She said, "Pamela you are too busy." She is right. Keeping busy stops me from thinking about the road ahead; the long path and the short road.  The bumps, the one way streets, the no turning back signs which rear their ugly heads.
I have a good support team with family, friends and the HD association, but still I can feel alone and vulnerable.  Keep busy, keep smiling, keep going.
This afternoon I did more housework, raked up the weeds I had pulled the other day and binned them and finished by spraying every un-pulled weed and winter grass I could find without choking a nearby plant.  To finish up the service provider came out to do an annual review.  It took an hour and I was itching for her to finish to start yet another task at hand.
Solutions are little pleasure poppers.  One friend suggested I try yoga  It is something we have discussed but always seem too busy but this Thursday is finally free and hopefully we will give it a go.   I am hoping that it will help.  I am getting weary with my own unrealistic expectations.

To Trim or to Butcher Big Hairy Bush?

I am watching the Wimbledon Men's Final and running around still finishing the work for the day.  I hope the best player on the day wins, this year I don't have a favourite.
The sun was warm in Perth today,  the weather otherwise only 16 degrees.  The bedside clock I put outside to keep an eye on the time while I attacked the garden said it was 30 degrees in the sun.  It was healing energy to my body.  On Friday I had attacked the garden beds, digging for 3 hours to eradicate the weeks.  Today I pruned.  I tidied up the many bushes, snipping here and snipping there.  Really I have no idea what I am doing, just pretending!  I was left with the big hairy bush which has been there for longer than we have lived here for 27 years.  In its previous life it has been pruned and shaped and shaped and pruned but over the last few years mainly just pruned and cursed at...  Today it got what it deserved - a number 1 haircut, cut back to its spindly branches and all its lovely frilly greenery butchered.
I was left with the patio area strewn with the hapless branches - more work.  Then my aching arms were given a rest and my mind took over.  How often will I need to trim this hairy bush to keep it under the control? It is a weight upon my shoulders.  Suddenly I experience a light bulb moment - what if the hairy bush was no more?  No more pruning, no more shaping, no more butchering, no more sadistic thoughts of its demise?  Done I said to myself.  Tomorrow I start the, "dig the hairy bush out of the ground project." It has rather a thick trunk and is as tall as me (I am short), just like Rome it wont be finished in a day it may even take a month but where there is a will there is a way.
Then I started thinking again. If I can get rid of big hairy bush what else can I get rid of to make my life less busy and more time for Merv and Mel?  I thought about what I do differently now compared to even 6 months ago.  Retiring from paid work was the big one but I will start to put in action other things I can change to make life easier for me.  I am challenged to see what changes I will make and how I will implicate them.

The Prodigal Son Returns

My boy Dustin flew home from Sydney today and we picked him up from the airport.  He hadn't been away for a year or a month, just a week.  He attended Hillsong Convention, an annual Christian event with a mate of his. He had a great time at the convention not just enjoying the program but rubbing shoulders with fellow Christians and networking with others who run single and social groups.  Dustin is a blokey socialite.  He enjoys hanging out with the blokes, with the girls, yes everyone.  He is currently helping to run a social singles group.  There is emailing, facebooking, texting, planning, booking, delegating and making sure the event runs smoothly.  Afterwards there is feedback and smoothing out the wrinkles and more planning for the next event.  He does it well.
Dustin is a good kid, when Merv became ill in 2010 he was there ready to help in whichever way he was asked.  He spends time with his Dad, taking him to the movies,  watching the Eagles win (or lose) or enjoying a DVD together.  If I have a planned event in the evening or during the weekend I am told to book him ahead and he will book us in!  I have been able to go to dinners, afternoon teas, shopping ventures, time with Mel, creative writing classes and so on.  He has been a god-send.
I don't know what I will do without him.  Today his plane came in at 4pm and by the time we dropped off his mate and returned home it was 5:30pm.  Time for coffee and turn on the TV to watch the footy match.  He had said he would stay for dinner and I made his favourite Shepherds Pie and Fruit Crumble and custard for dessert.  The dinner discussion circumferenced a variety of topics including the convention and Sydney. Then there was the bombshell. "I am thinking of moving to Sydney," he casually commented.  I don't want him to go, but I know it would be good for him.  Deep breath, we will see what the future brings.

Gold Star Treatment

It  wasn't so long ago I listened to a previous work colleague of mine telling me how well her children were doing.  They were straight A students attending university, training to be an engineer,  marine biologist and doctor.  Whatever they touched turned to gold.  Not only were they hard working students they were gifted in music and sports. My colleague was very proud of them and I was happy for them. 
My kids didn't go to uni and their gifting's were not so black and white!  My kids have many good attributes, they are good people who enjoy active social lives and work well with others.  I am proud of them. 
Life is full of challenges and choices.  Mel is trying hard to lose weight and has joined Weight Watchers.  In 4 months she has lost 5 kgs, which of course is fabulous. Mel still has 20-30 kgs to lose, it is hard work.  Mel's weight fluctuates from one week to the next but gradually she is losing the weight.  She is tempted by food her friends are indulging in and what she sees and smells in takeaway places, shops and even her own kitchen. 
Today she went to Weight Watchers and found she had put on 0.5kg, she wasn't so disappointed but I was.  She had been given a snakey ladder drawn on an A4 sheet of paper on her previous WW meeting to track her weight loss at each 100g.  I had hoped she would stick on her first gold star today on the loss of 100g but no such luck. 
Why is it we want our kids to win and win every time?  When they fail to meet a target we not only blame them we blame ourselves.  A deep breath and a 30 minute walk later we discussed what can be done to keep her on track with her weight goal.  I know it's an ongoing battle and there will be times she will fail more times than she will lose weight, but that is life.  Real life  and I have to let her do it her way. 
I met my work colleague in the supermarket recently.  She told me her daughter after getting her engineering degree decided to be a violinist in an orchestra, which is nice.  Her second daughter's marriage fell apart and she has now returned home to live.  Her son is doing well.  Nothing is perfect forever. 

Why Did I Do This?

Sometimes we do things on auto pilot, just like driving the car to the supermarket, we have done it a million times before.  Other things we think about but the choices we make can change our lives.
Today was just silly.  We went to Centrepoint Shopping Centre as it was in walking distance of Mel's diabetes appointment.  She bought a range of groceries which didn't need refrigeration and we went for a walk while the car sat idly in the same car parking space.  We had already discussed we would have lunch at Subway in Midland Gate Shopping Centre,  a short drive down the road and pick up the other fridge groceries while we were there before going back to her unit.  But our plan changed when she bumped into her boyfriend at Centrepoint and I suggested we have lunch together at the Friendship Café.  We all agreed and enjoyed lunch, completed her shopping there and went for a pleasant 30 minute walk nearby.  The weather was 16 degrees, cool but in the sun it was gloriously warm.  Then we got in the car drove down to Midland Gate to complete the shopping.  No need for Subway now.  It wasn't until I got home I wondered why we had not just completed the shopping at Centrepoint.  We were right there!  Then I realised we often make plans and stick to them, just to ensure we follow them through.  Why?  I think because we spent precious time working it out, planning the future and we become frustrated if the plan needs to be changed, especially at short notice.
No one missed out today or was hurt by our actions, but many times in life we dismiss people because they don't fit into our plans for the day.  We reject their suggestions and ideas and continue on our path ahead without taking the time to check the path and the pitfalls ahead. 
I hope I see all of the picture and not just my needs in the future.

Trouble with Tax

I retired from work over 3 months ago.  I am so pleased I did.  I was no longer able to do my job efficiently and I knew it was time to leave.  Sometimes you just know, so you do.  It's like leaving a job and getting a new one.  You may procrastinate over your decision for awhile but you know that you know that you know it's time to go.  So you do.  It was like that for me.  I have no regrets.  I revelled in the extra time I had, that I could go to the shops without dashing in and out to be home in time for Merv's carer to leave.
The financial year has begun again and my workplace posted my group certificate (do we still call it that?) I was surprised I thought I had earned less over the 9 months I worked.  Tonight I thought I would be smart and save myself  $120 by completing my own tax return.  It used to be so simple, but not anymore.  The e-tax man was like a school teacher with a sore head.  It wanted to know those easy things like my name, address and date of birth.  Too easy.  Then it asked for password numbers, sequence numbers and a myriad of others which I knew nothing about. 
It only got worst.  Did I pay money for planting trees or some type of pool thing?  What does this all mean.?  Do I need to claim a tax exempt for the Carer Pension?  "Yes please," I replied but could not find the right button to click.   I had also paid $1,000 into my superannuation on my financial advisors advice.  He said I could put it on my tax and that nice tax man will put $500 extra into my super fund.  Sounds great doesn't it, but I have no idea how to make it work!  I could hear that e tax man having a chuckle at my expense!
I like to tell the truth and if you don't you get sprung anyway.  I declared I had withdrawn a large sum from my super fund and it was added to my income total.  I know I don't have to pay tax on it but the e tax man isn't so sure.  My tax bill and Gina Rhinehart's are looking similar.
After 2 hours of frustration my mouse came to my aid.  I clicked on the right hand corner of my screen and decided against better judgement to save the monster I had created.
Deep breathing commenced and continued. Thank God I put an end to the crazed e tax man.
The power of the mouse, the victory of the slain e tax man.  Let him be a crazy, hairy, ravenous bear to another poor unsuspecting victim.
Tomorrow I will send an email to my accountant and book an appointment for him to do my tax!

Harry on the Prowl

More beautiful weather in Perth today. 22 degrees and delightful, like a spring day.  We have experienced the second driest June on record.  Showers are expected tomorrow and very cold by the end of the week.
Mel rang me this afternoon, 'Mum, Mum can I go to Geraldton?  Louise has asked me to go with her.' Mel is 34 and there is no reason why I should make the decision for her.  I am a fountain, maybe a mountain of information for her why she should, why she shouldn't, but I shouldn't hold the ace card for her.  She should make the decision.
Geraldton is almost 5 hours by bus and 420km north of Perth.
I shudder.  A few years back I lost a few years of my life when Mel had arranged with Louise and Kristy to holiday in Margaret River for a few days.  Everything was planned and going well and Merv (who was well at the time) drove her to East Perth bus station only to find the girls had the wrong information and they needed to catch the train from Perth Station.  The girls caught the train into Perth and Mel somehow didn't make it. The train left Perth without Mel.  Sketchy memories saw me with Mel at East Perth Station and arranging for her to catch the train and meet up with her friends in Bunbury.  Then the; 'what ifs' played havoc in my mind, it was worst than a long winded game of baseball.  I stressed for the 3 hours it took before she was reunited with her friends and I breathed long drawn out breaths when she had.  Today when I reminded Louise of this, she simply said, 'We could have waited.' Yes, they could have, my life span would be more promising if they had.
Then there was the holiday Mel took with boyfriend Julian to Albany almost 8 years ago.  Nice young man with grandparents in Albany who they stayed with.  Mel started wheezing and by the time they were due to go home she was a hospital case.  The grandparents took her to the local hospital where she stayed for a few days with me ringing the staff and Mel on her mobile to keep up to date with her progress.  I had the dilemma of driving down there but I knew it was better for her to fly home than be subject to a gruelling 6 hour bus journey without a nebuliser.  I offered to fly Julian home also but he had an aversion to flying.  I did go to the bus station the day he returned to Perth and took him back to his house.  They broke up not long after this ordeal.
Therefore the word, 'holiday', chiming in my ears brings back these daunting and graphic memories and endeavour to burden me with despairing outcomes.
Harry maybe on the prowl, ready to pounce and devour.   But we will stand our ground and I will ensure Mel is well prepared and in fighting spirit for her short holiday.