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.