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!