What Did I Say?

Sometimes I don't shut up and other times I bide my time before I speak my mind. It depends on the company and the subject.  I figure lots of people are just like me.  Sometimes I just rabbit on because the other person isn't adding to the conversation.  It's like that with Merv.  Before he became ill he would talk almost non-stop.  He talked about everything and nothing, no one could talk more than him.  I wonder now if he knew what was about to happen to him and he was making up for lost time in the future.  Immediately he became ill he stopped conversing.  He could still talk but holding a conversation as we know it was limited and usually consisted of a one sentence statement or question. 
From one extreme to another.  Merv never liked the phone but tolerated it, making a few calls when necessary and answering the phone when no one else was home.  After he became ill he would not answer the phone no matter how long it rang for.   I now make all his calls on his behalf.
I encourage conversation with him by dusting off our many old photo albums.  We have thousands of photos from everyone's birth to now!  So many memories, each one with a story to tell.  I will spend hours looking at people's photos while their other guests are yawning or already snoozing!
I miss our conversations from long ago.  The plans we discussed and put in place together, our hopes and sharing of memories.  I can only move forward reminiscing about the past and finding hope in the future.

Christmas Choices

Last December I had few choices to make.  I was working three days a week and filling the rest of the week with appointments plus my ongoing caring commitments.  The joy of Christmas was everywhere.  Everywhere except within me.  It was more like a battle to keep my head above water.  I shopped for Christmas decorations and bought things I wouldn't necessarily buy.  It compensated for lost joy!  I knew in my heart it was going to be my last working Christmas and like a magpie building its nest I decorated the house,  I decorated my office also and the volunteers came in to marvel at my once boring room transformed into a Christmas wonderland.  I kept the Christmas celebrations with Merv to a minimum.  There was no time to attend a Carols night or drive past local houses transformed into sparkling Christmas scenes or attend other Christmas functions.  We did attend the Huntington's Community afternoon tea and I attended the office party at the local pub. 
This year we get to choose.  Where there is more than one celebration on the same day we choose which event we want to attend.  We are already planning to watch the annual city Christmas pageant next Saturday evening.  I am scouring the local papers for Christmas Carol nights.  Why settle for one, when we can attend two or three or even more!  The joy of community and unity is a warm hug at a Carols evening.  Our calendar is filling quickly and I am beginning to fill with joy!

Fruity Success

A basket full of luscious strawberries

The day went full speed ahead.  Merv and his support worker headed off to play ten pin bowling and later they try to outwit each other playing board games at home.  Mel has two appointments.  Firstly with the diabetes educator and secondly with her dietician.  Both of them were impressed with her progress and excellent blood test results.  We wasted no time in shopping for seasonal fruit and veg before arriving at the swimming pool.  Mel is a wizard in the pool!  She strides ahead at full steam with her hands locked in front of her.  She completed 67 walking laps in less than one hour!  I was struggling to complete 20.  I took time out to swim leisurely and allow the stress to drain from my inner self.  I lay on my back and let the water hold me as I immersed myself in the escapism of the melodic lapping against my skin. It was as if I had passed over into another realm. 
All too soon it was over.  I grab my towel, round Mel up and drive back to her place for a hair wash and shower.  A quick drive to my house for curried egg and salad sandwich before Mel's GP appointment at 2pm!  Goodness!  All done.

Merv picking the fruit of his labour



Merv's patio garden is thriving and producing an assortment of surprises.   I noticed the strawberry plant was heavy with big juicy strawberries.  I asked Merv to come outside and pick them.  We rejoiced together at his gardening success.  Don Burke would be proud of him, just like I am! 
The tomato bushes are growing prolifically  and are full of small green tomatoes awaiting a colour change.  The flower seedlings have now bloomed and fill their baskets with cascading rainbow coloured petals, which add beauty to our otherwise ordinary back garden.  I smile and share Merv's joy with him.

Whirlpool Moment

I am having  a whirlpool moment.  Everything fell into place only a week or so ago and now its spinning out of control.  So much to do and so little time, especially at this time of year with Christmas looming straight ahead.  There are endless appointments plus a handful of important end of year celebrations scribbled on my calendar.  Some of these I have to juggle before I lose sight of reason for the season.  There seems to be such little joy ahead.  Maybe I am just tired and in need of  a break, not a fortnight, or a week, just a couple of hours to clear my head and hear the sound of peace and joy resonating in the distance.  We have experienced numerous stresses this week and just using the wheelchair is tiring.  Merv weighs 90kgs. 

Today I attended an iPad training session and later I completed the fortnightly shopping.  Everyday I do the same things at home including dressing and showering Merv.  Yes, what I need now is  just a little 'me time.' It will put the roses back in my cheeks and give me the inspiration to keep going forward.  I am meeting a friend from the carer's group on Friday morning for coffee.  I am looking forward to sitting, chatting and sharing our stories together.

Communication Mishap

I was worried when I spotted two cars parked outside my house this afternoon.  I only expected to see one.  I had arranged care for Merv with our regular service provider.  I was attending a carer training course for over five hours.  
I parked in the driveway behind the car I didn't know and entered my house. The regular support worker saw my distress and immediately asked if the office had rang me to let me know she would have a 'buddy' with her.  The answer was simply 'no'.  No one had rang or emailed me.  
A buddy is an experienced support worker providing hands on training to either a new support worker or a support worker requiring specialised training to provide a service for clients with specific care needs.  Many years ago part of my job description was to buddy support workers.  I know the importance of ongoing training and will always support and encourage training new workers.
It is sad and alarming that communication is not taken seriously in our community. Also it is just common courtesy for the service provider to let us know about any changes to Merv's services but there is a bigger issue here.  After the girls left Merv asked how many grandchildren we have.  I stood and looked at him. I was speechless. We have no grandchildren! We probably will never know exactly what caused Merv's disorientation. What I do know is; I need to return home knowing who is in my house and both Merv and I are agreeable to the service and how it is provided.
I was unable to contact the coordinator by phone and sent her an email voicing my concerns.  I am awaiting her return call.

Wheels of Opportunity

Christmas Decorations as seen from the food hall

It has been a while since Merv has spent a couple of hours shopping with me.  Lately we visit one or two shops at the shopping centre before heading home.  I am thrilled to report that has all changed.  We took the wheelchair and headed for the Galleria, the largest shopping centre nearest to home.  We spent time at the food hall delighting in morning tea before heading off  for some serious shopping!  We admired the golden Christmas decorations throughout the centre.  We visited Myer and looked at the new decorations.  We laughed and pulled faces at the latest singing, dancing and flashing Christmas gismos.  We took serious steps from one end of the centre to the other,  stopping to look at shop windows and advertisements.  We went up in the Myer lift and down in the lift next to the Body Shop.  We found ourselves searching for milk and other staple items in Woolworths.  It wasn't long before the crowds thickened and it was difficult to manoeuvre the wheelchair without toddlers and little people persisting in blocking our passage. Time to retreat homeward.  We returned home tired and elated.  This wonderful set of wheels  is giving us opportunity to shop and be part of our community together, not apart. 

Lorryn's Wedding

Lorryn and Her Father entering the Wedding Garden

Lorryn has been waiting for this all important day for over twelve months.  It was that time last year she surprised everyone with her news.  Nick had proposed.  Lorryn beamed and chatted happily and endlessly about her future wedding, the ring, the dress and the arrangements.  You may imagine Lorryn and I met often to share coffee and catch up on her news, but I only know Lorryn as a work colleague.  She is young, pretty and full of life.  She worked in a different part of the office from me and we caught up briefly in the office kitchen or when I needed to ask her a question about a client or a community service.
Since I retired I have dropped by the office a few
times to say hello and catch up with staff.  I didn't want to miss Lorryn's 'Happy Day' and today it all came to fruition.


Garden Wedding Vows

The weatherman promised a few showers and I prayed he was wrong!  A light shower caused some anxiety before the 4pm wedding but quickly cleared.  The sky was cloudy and a cool refreshing breeze kept us pleasantly cool.  Their wedding was in the beautifully manicured gardens at Caversham House in the Swan Valley.  A number of office colleagues came to celebrate Lorryn and Nick's special day.  We kept busy before the ceremony catching up on personal news and taking photos. 
Lorryn and her father arrived in a horse and carriage.  Mother of the Bride, bridesmaids and small children arrived in an impressive black Hummer Limousine. Lorryn appeared radiant in her beautiful wedding dress.  Her father walked her down the aisle and the awaiting red carpet to her groom.  The ceremony was  tailored to Lorryn and Nick's requests and their vows and readings their own personal thoughts and ideals.  It was very special.


Nick putting Lorryn's wedding ring on her finger

It is a joy to share the special wedding with a couple very much in love.   May their lives always reflect their love for each other.

Lorryn was happy to share her wedding day on my blog.

Empty Nest

Yesterday the ladies were discussing their children and their grandchildren.  I have long ago given up any hope of grandchildren.  Considering our family gene pool, our chance of HD free grandchildren is only fifty percent.  Instead of longing for a future generation I spend my time enjoying the time with Merv and our kids.  Mel left home in 2007 to live independently.  Now due to circumstances she lives in supportive accommodation.  Dustin left home in 1997 only to return a few years later when the life he was seeking failed him.   He asked if he could stay with us for three weeks and finally left two years later! 


Family Together Time

 Today Dustin called in and stayed for morning tea and lunch.  We shared news with each other and  discussed his job and other important aspects of his life.  He washed his new car and spent time with Merv while I shopped for weekend groceries.  I chatted with Mel this afternoon.  She had gone into Perth with a friend today.  We agreed on a long walk in Garvey Park tomorrow morning.  We will take the wheelchair for Merv.

I know lots of people whose children either live too far away for them to visit regularly or whatever reasons they have severed contact with each other. 
We are so very blessed our children are happy to visit and spend time with us.

Left Hanging

I have considered visiting the local Arafmi carer's support group for sometime.  I have picked up flyers at the clinic and even jotted down the information at another clinic.  In 2000 I attended every meeting for the whole year and then I stopped.  The meetings were exactly what I needed at the time.  The benefit from fellow carers helped me; to share, listen, learn and put life into perspective.  Thirteen years is a long time between visits.  It's a long time whether you say it out loud or write it.  It remains a very long time.  The old saying; 'It's never too late to start again,' rings true.
Merv was off to his day centre.  I called in to see Mel and drop off her new bathroom trolley and some of her shopping from yesterday.  I checked the road map again and headed off.  It was only five minutes away and I arrived early.  I wasn't surprised I was the only one there.  I sat in the meeting room.  I checked my iPhone, wrote my shopping list, sent a few messages and chatted with a staff member.  By 10:10am I gathered no one was coming today.  I had rang and confirmed the meeting yesterday.  I rang again only to find the group were meeting a local coffee shop!  There I had sat alone in the meeting room, just hanging, waiting to be part of the group.  I had the choice of driving to the café or just going elsewhere.  I chose to meet the group at the café.  Around the table sat two office staff and three carers.  I ordered my coffee and sat eagerly chatting and listening for the next hour or so.  They were all 'new' carers but I felt as if I had finally come home!

The Conqueror

When everything went without a hitch yesterday I was sceptical  today would not be so kind.
My sixth sense was spot on.  Mel's weekly pension was $40 less than usual.  I dreaded the call to Centrelink, the waiting and the outcome.  Fortunately I arranged for someone to ring me back.  I explained to Joanne the ongoing circus concerning her rent assistance.  She worked diligently to correct the error on the computer and after forty five minutes it was corrected and Mel will be reimbursed the $40 in her pension next week.  Thank goodness. Many thanks to Joanne.

Celebrating my handywoman skills!

I promised Mel a trip to Ikea in Innaloo.  I longed to marvel at all those zany Ikea things.  I get excited by unique storage ideas and unusual household items.  I think Mel was looking forward to a lunchtime feast in the food hall.  We took time out over our healthy lunch of salmon and shrimp salad, coffee and a shared fruit salad to study the Ikea catalogue.  I have a, 'No Junk Mail' sticker on my letterbox and the Ikea book wasn't home delivered to me this year, but it has on previous years.  We discussed buying  a storage unit for Mel's room in the new year.   We oohed and aahed over soft toys, fairies, fruit bowls, kitchens, bathrooms and bric a brac.  We took measurements and imagined the items in our houses before replacing them on their shelf!  Finally we bought Mel a simple mobile trolley for her bathroom items, a fairy doll for a friend's young daughter, kitchen storage containers, an alarm clock and a new look frypan.  Tonight I pulled the parts out of the pack and quickly put the mobile trolley together.  It was relatively easy, even for me!  Merv watched as I pushed in the castors, screwed the metal frame together and added the shelves.  Presto!  Instant - well almost instant shelving.  I beam.  I have conquered!



Not Vision Impaired

The letter came in the post.  It had Merv's name on it and the advertising told me it was from the optician.  I thought it was just advertising and opened it intending to toss it away just as quickly.  It was a letter which intrigued me as I read.  It was an accusation!  A letter stating Merv was overdue for an eye test.  What?  He had his eyes tested in August this year and he is wearing his new spectacles!
Does every carer think it is a slur on them when an accusing letter comes their way?  I do my very best to keep on top of all the appointments and all the other ones I need to check on, just like the eye test.

I decided I had three options. 

1.  Ignore the letter and bin it
2.  Ring the optician and inform them the letter was sent by mistake                 
3.  Visit the optician with the letter and the receipt

Oh the receipt.  I have a four drawer filing cabinet, surely it would be easy to find?  I checked the medical file, not there.  I checked the bills paid file, not there.  I checked the warranty file, not there.  I turned the house upside down and sighed in frustration. 
My next step: I could inform them the date Merv had his eye test.  I checked my Microsoft Outlook, no record of a date there.  I checked the kitchen calendar, not there.   I checked my blog, not there!  I checked the bank balance, yes it was there but I knew the date was incorrect!
Finally I went back to the filing cabinet, ah found it!  I looked at my options and agreed option 3 was the only way to make a difference.
This afternoon I walked into the optician and asked to see the manager.  He was a large man who listened to my every word.  I was straight to the point and asked why Merv had received the letter.  After checking his computer with every possibility, he could not give me a valid answer.  He was kind and apologetic.  I left the letter with him and encouraged him to contact his marketing group.  What I took as a slur on my caring role is also a slur on his company's professionalism.  How many others have received the same letter and simply binned it? 
Caring for Merv is about his physical, emotional and spiritual needs, including all the ongoing appointments.  I must remember to record all future appointments for future reference rather than relying on a business card stuck on the fridge with a magnet!

Harry Winks

Life changes quickly
Life changes slowly
There is no life without change
It sneaks up when you are busy elsewhere
and takes you by surprise
When did I notice Harry was stirring?
Was it before I went away or maybe after?
Memories of walking hand in hand
Long walks together no matter the weather
Now no longer
Just a memory to hold like a jewel
Harry winks, yawns and sleeps again
Now we spend time in other meaningful ways

Counting Jellybeans

Another celebration of a different kind.  Two years ago today I paid off our crippling mortgage.  We claimed on Merv's disability insurance which was part of his superannuation.  After three months we received not only the disability payment but the whole superannuation amount.  I held the cheque and thought;  mortgage or Ferrari?  Of course it was a no-brainer.  The mortgage had to go.  I made a day of it by taking the day of work.  I did tell my boss!  I travelled by train up to Perth and treated myself to morning tea pretending to read the local newspaper.

Sweet treats always help

 I arrived at the solicitor's office after withdrawing the necessary bank cheque.  I was ushered into the boardroom of the office.  A large table surrounded by empty chairs was before me.  Where were the brass band and the cheerleaders?  Surely paying the mortgage early entitled me to a little fanfare?  No such luck, the solicitor took my cheque, gave me a receipt and suggested I go to Landgate in Midland and receive the title deed for my property. 
Definitely no fanfare!

I was running against time, I needed to board the train, get to Midland, pick up the title deed and return home before the support worker needed to leave.  It was a Friday afternoon and Landgate was almost empty.  I was holding the title deed in my hot little hand in no time.  The bank no longer owned my property, it was a very good feeling.  It took me almost a year to come to terms I never had to pay another mortgage payment.  I photocopied the title deed and put it on my desk to remind me! 
Two years on I no longer think about monthly payments and interest rates.  My thoughts are now elsewhere.  Keeping my head above water financially is my goal.  I save a small part of the pension. There are always holidays on the agenda!  I  keep a tight budget but I always allow enough for a visit to the Dome Café or an outing somewhere with Merv.  The government has a budget app,  Track My Spend.  It helps me to see where my money goes and keeps me responsible.  Well at least, most of the time!  Just like most of life's challenges, budgeting is a balancing act while having some fun along the way.  We're happy as long as we can pay the bills and have a little left over for some sweet treats in our shopping trolley.

Government House 150th Anniversary

There is celebration in the city today.  The Governor, Malcolm McCusker and his delightful lady, Tonya McCusker are today hosting an open day to celebrate the 150th Anniversary of Government House. 


Government House in Perth

I tinkered with the idea of joining in the celebration.  I thought long and hard how to make it work for us.  I took into consideration the distance between the car park and Government House. How long we would be there and the possibility of seating being available.  After much thought: it was either take the wheelchair or plan a different outing.  I asked Merv how he felt about using the wheelchair and he replied, "I don't need it yet!"  Yes, he is right.  He doesn't need a wheelchair in the house, or the garden or for short trips in shopping centres and ten minute walks, but this is no ordinary outing.
We arrived early and entered through the back garden entrance.  I had been here in 2011 to attend a volunteers garden party with a group of volunteers from my workplace.  We had a wonderful time.


 

Mel with Merv outside the food stalls

 

My quest today was to find which path lead us to the main house.  There were many steps and only one gravel steep path.  We walked past the stage for the preliminary opening and speeches.  Hundreds of people were already seated waiting for the event. We viewed a mother duck and her large brood of ducklings jump excitedly into one of the feature ponds.  As I pushed Merv up the gravel incline I struggled with his weight.  Fortunately an army cadet came over and offered his help to push the chair.  Thank goodness he did.  The path led to the morning tea room.  Perfect!  It was 11am and time for my caffeine fix.  Mel and I shared healthy sandwiches and Merv happily indulged in a chocolate cupcake.  Afterwards we went out on the balcony to listen to the opening ceremony and watch the  tri-service cadet parade.  It was a festival atmosphere complete with dress up characters and entertainment.
While the grounds in front of Government House were transformed into a food court representing almost every nationality, we entered the smaller part of Government House and delighted in the harmony and clarity  of the choir.  I think most of Perth had already appeared and the disability

access was limited.   Unfortunately we had to enter the main part of the house through the 'exit' and therefore we were going against the crowd, which was mostly impossible due to the large number of people.  We did enjoy a number of rooms, including the drawing rooms and  numerous studies before leaving. The opulence and character features of the rooms were a sight to behold.  We left via the St George's Terrace entrance and through Supreme Court Gardens which led us back towards the car park.  There was a ten minute stretch where gravel prevented me from pushing the chair and Merv was happy to walk for that short amount of time.
I asked Merv how he felt being in the chair and he replied he was glad we took the wheelchair.  He knew he would have struggled if he had to walk and spend lengthy periods standing.  All the available seating we saw was occupied, except the morning tea tables.
Our first outing; a difficult one even with the chair due to the parking distance and crowding but overall definitely a gold star event.




 

Bibblumun Track

I fancy myself as a 'walker,'  not the really experienced type with the bulging backpack complete with sleeping bag, tent and food.  No, I am the yuppie type.  Give me a bath and bed in a hotel at the end of each walking day!  It's more like having your cake and eating it to! In April this year I completed stage one of the Cape to Cape Walk in the south-west.  It was a two and a half day walk covering 31kms. We walked during the day, dined in a restaurant at night and slept in a hotel.  It suited me just fine!
There's not always a lot to do on the weekends, therefore I booked Merv and myself in for the Bibbulmun Track presentation at our local library this morning.  After I complete stage two and three of the Cape to Cape walk, possibly in 2015, I delight myself in the thought of completing even a tiny part of the Bibblumun Track. 


The Bibblumun Track Map in WA

Steve was our presenter today.  He has walked the whole 1,000kms from start to finish three times in fifteen years and has completed endless shorter walks on the track.  The track begins in the hills of Kalamunda, a suburb of Perth and winds its way to Albany on our southern coastline.  Steve was easy to listen to and kept us entertained with his many stories, including the man who packed his hairdryer in his backpack!  There is no electricity on the track!  From beginning to end the track takes six to eight weeks to walk with plenty of overnight campsites.  There are a number of towns on the way but some parts of the track the allowed car parking is from four to seven nights apart (walking).  The adventurer in me sighs.  I wish I was younger, or fitter, or just more adventurous!
Merv and I have always walked, whether in the bush or along the beach or the river.  It is something we miss together.  Hopefully the new wheelchair will get us walking again and enjoy the pleasures and the beauty of the great outdoors.





Fish & Chips at Kailis Brothers

I rubbed sunscreen into Merv's arms, neck and face after dressing him this morning. It is meant to be 36 degrees today, rather hot.  Merv is off to Fremantle with the day centre for lunch.  Lunch in Fremantle is more often than not; fish and chips overlooking the ocean at Cicerellos or Kailis Brothers.  Today the group is lunching at Kailis Brothers.  Crisp, crunchy, fresh, deep fried fish and chips.  I can almost smell and taste it now!
Last week I booked Merv's respite for next year.  I could only get one week in April instead of the normal two.  I have found two weeks gives me enough time to enjoy a holiday plus some time around the home to get some big jobs done.  It maybe painting or having the sandstone professionally cleaned and sealed.  Chores which are difficult to complete with Merv at home.  Last week the admin officer said there is a possibility the person having respite the week after  Merv's may be happy to reschedule to the following week.  Just before I dug out the number for the respite this morning the phone rang. I answered, surprised to hear the admin officer was calling as I was thinking of her!  She said everything was fine and Merv was booked in now for the two weeks in April.  I was overwhelmed with the generosity of the person willing to move their own respite to accommodate us.  I had imagined I would have to contact another respite provider to receive the two weeks.  It is a joy to know I no longer have to travel that path.  All is done.
Merv returned home on the community bus just after 3pm.   He smiled as he told me he ate fish and chips, but not all the chips.  They often give you more than a decent serve.  He was hot and was soon enjoying a couple of glasses of chilled water.  Afterwards I made him a chocolate milkshake and scooped out his favourite ice cream into a bowl.  He grinned at me and held my hand.

Can of Worms

Last year I made a promise to myself to retire from work in twelve months.  I didn't last that long.  I retired within nine months.  The reason?  Mel said she wanted to go ahead with her HD predictive testing.  I knew what it meant.  Meetings, counselling and results; tears or elation.  I knew I couldn't be her support person while I was working. 
Mel's clinic specialist spoke with Merv and me in August last year while she sent Mel off to the hospital pharmacy to wait for her meds.  The doctor said she was concerned about Mel's shaking and movement and suggested Mel consider having the HD predictive testing.  I knew Mel wanted to do this.  It was me whose head stayed buried deep in the sand.  It was no easy decision to retire but Mel's health and well being outweighed all else. 
Mel's specialist was the type of person you may want as a best friend.  Happy, smiley, full of cheer and always looking at the bright side of things.  On the other hand she didn't mess around, she said what she thought and what she knew, but always in a positive light.  Mel loved her.
As in most public systems she left the clinic before Mel knew of her results.  She asked me if I would send her a message about Mel's results via the clinic secretary.  I said I would.  I didn't.
Once we knew I couldn't bring myself to share the news with her.  A lump rose in my throat and I kept the news to family and a few friends.
Only a few days ago while Mel was waiting for her appointment with her new specialist there stood Dr Happy!  We chatted a little and I suggested Mel share her news with her in a room where she could not be overheard by waiting patients. 
I didn't feel guilty I hadn't shared Mel's news with her before this time.  It was always going to be face to face or not at all.  Our actions or the lack of them can sometimes open, 'a can of worms.'  I don't have a magic wand to wave, I don't know what will happen next but I do know I can be there for Mel.

Catch a Wheelchair

Sometimes a day starts with a little drama and comedy and mine was just like that.  I had finished my cruelling 30 minute work out on my treadmill and I could hear the bin man roaring down the road in his industrial truck.  I sprinted outside, clicking on the remote, waking the automatic roller door  to the carport. It grumbled as it came to life.  I grabbed the green bin and did the 100 metre sprint to the verge.  I looked at the truck approaching and oh no, its the recycle bin truck!  Back I sprint grabbing the yellow bin and rush back to the verge.  The nice recycle bin man had noticed the strange little housewife sprinting back and forth and stopped his truck right in front of me.  His claw reached out and grabbed my bin, shaking it violently above the truck before returning it to the verge.  I waved, grabbed the yellow bin and sprinted back to the carport.  I must make a note to put the bins out the night before!
Merv was happy to attend the HD social group this morning while I attended a free iPad training at the local library. 
I was also on a mission today.  I had rang the Occupational Therapy department at the local hospital a couple of weeks ago in hope Merv's assessment could be brought forward.  Alas the OT I spoke with today explained Merv's needs were secondary compared to others who need equipment in their homes.  I agreed with her 100%.  I have worked in community services for almost ten years.  I still could not understand why Merv's assessment was taking six months, since last year if Merv was in need of equipment it was just a phone call and the following week they were knocking on our door!  Last year Merv was given foam triangles to place under his mattress which stopped him from falling out of bed.   In the last few months a social worker has given me information to contact private OTs but now I am told we would not receive funding unless we go through the hospital assessment!  Oh goodness is there no hope?   I finished today's phone call by stating I would buy Merv a wheelchair.


Catch of the Day outside the hospital

I went about my day, taking Mel to appointments.  My mobile rang just after 1pm.  The OT was on the line saying they had a couple of returned wheelchairs and they were happy if we took one for Merv until he has his assessment and is measured up for a chair of his own.  His assessment is  booked for 8th January.  I was delighted we had been offered a wheelchair and I met up with the OT, who was very friendly.  I apologised for being difficult, because I know I was.I put the wheelchair in the car and took it home to surprise Merv.  His support worker was as surprised as he was!  We chatted about the opportunities of long walks using the chair. While I stressed he will still walk for at least 10 minutes each day to keep him healthy and as mobile as possible.  I am already dreaming about long walks by the Perth foreshore and the joy of the 50 minute circle around Monga Lake!


Wrong Way Go Back

I almost forgot it's Mel's busy week.  Blood test today and specialist tomorrow.  It was lovely to spend time with Mel, we shared a walk together around the hospital wearing our hats and chatting about next years holiday.  Merv kept busy playing games at home with his support worker.
Another appointment at the GP for Mel this afternoon which resulted in another blood test.  I am concerned the specialist isn't talking to the GP and it's essential they are on the same page.  Of course they don't actually talk to each other, they email or post results to each other.
Mel has lost almost 10kgs in the last year, 8 of them at Weight Watchers since March.  Merv and I were delighted to hear she is at her lowest weight in many years.
On the way to her unit this afternoon we were zooming along the Reid Highway at 90kms per hour when a car in front veered off the single lane stretch of highway onto the other side of the road.  I was stunned!  As I held my breath the car continued on the wrong side of the road, weaving around oncoming traffic until we could no longer see it.  There was no collision, no honking of horns and if I hadn't seen it with my own eyes I would hardly believe it.  Mel, sitting in the back seat also witnessed this bizarre event.  We talked about it, as we do when the unexpected happens.  We wondered if  they were drunk or on drugs.  Did they realise the highway was only a single carriageway and not a dual?  Was it a dare putting lives at risks?  We had no answers and the event created conversation and no casualties.  I thought about this quietly as I continued to drive at 90kms, musing life is often wrought with issues which send us going the wrong way.  Do we need a sign saying, 'Wrong Way Go Back?'  At least I can say, 'Life is never boring!'

The Butler

Today the sky is clear, the sun burning hot, even though it's still early.  I have finished pulling up the wild oat grass behind the shed and the local city council is picking up my garden waste from my verge today.  I have pruned and dug up the lavender bushes in the front garden.  I have a plan and this is the first step.  Merv sat outside under the patio for awhile and suddenly complained it was too hot and wanted to go inside!  It must be hot, for he rarely complains about anything.


The Butler Poster Ad

I think about what we can do to get out of the house and out of the heat.   A check on the website and we are off to the movies.  We pick up Mel and head for the cool of the cinema to watch the newly released, 'The Butler.'  The two hour film started with pain and ended in glory.  It began in 1921 and finished in 2008.  The film is about racism in the USA during the life of  Cecil Gaines.  Cecil began life in the cotton fields of the south and was later employed as a butler in the White House.  The prejudice, injustice and cruelty towards 'coloureds' is clearly portrayed.  There were many times I shed tears during the movie.  After recently returning from South Africa where I visited the Apartheid Museum in Johannesburg, the pain of racism is raw within me.
Racism, disability, physical or intellectual difference affect many of us.  Unfortunately even today some people continue to show prejudice and heartlessness towards anyone outside of the 'norm.'
It brings joy and warmth to my heart when I meet those who show no prejudice.

HD Buzz

In any year you will hear about a cure which has been found or has advanced for a range of diseases and Huntington's is no different.  More often than not the claims are not backed by research and people, either with HD or their families are once again left disappointed.  the University of Leicester recently claimed in a recent study, 'could treat Alzheimer's, Parkinson's, Huntington's and other diseases. Unfortunately the hype of the press and the actual study are quite different.  HD Buzz website explains this.
    www.hdbuzz.net
HD buzz is the first internet portal of high quality HD research  news to the global community. It is written in everyday language by HD clinicians and scientists.  It is funded by various Huntington's Association throughout the world including Huntington's Australia.  They do not accept funding from drug companies or companies which would benefit from research.  They clearly state they are impartial.
I spent a few hours getting to know the website and will visit there regularly for updates.  The recent HD World Congress videos and notes are also located on their site.  There is always hope, especially  when we have young people at risk;  the hope helps us to get out of bed each morning and motivates us in our journey each day.

 

Summer Holiday



Amazing Meelup Beach, Dunsborough

Summer is on its way and a family holiday is on the cards for March next year.  I promised Merv and Mel a summer holiday in our magnificent South West, near Dunsborough. 
A very pretty and relaxing place to enjoy a break away.  Not that I am very good at stopping and staying!  My idea of a holiday is to see and experience everything. If its in the brochure or the tourist track, that is where you will find me. It's not everybody's idea of a holiday but its always worked for me until now.  Admittedly I enjoyed three lazy days in Mauritius but I had to talk myself into it first!


The Famous Dunsborough Bakery

Merv isn't in a wheelchair as yet but he needs a disability bathroom with a seat. Booking a disability holiday is no small feat.  It is no longer, 'that looks nice on the website; let's go there!'   Now I need to check the Access (mobility) Western Australian website for accommodation.  www.accesswa.com.au   The website is extremely informative, giving measurements of bathroom doors, the height of the toilet from the floor, the layout of the accommodation and much more, which is specially effective for people using a wheelchair. The websites of the Access accommodation do not specify which units/villas are disability friendly.  I have to email or ring each accommodation to find out.  More work. I sigh and think I will find the energy to send the emails next week or the week after and hope the accommodation is still available for March.  Before the internet we booked accommodation by mail or phone and paid a deposit only.  Now everyone wants the whole amount if booked online. I would like to be excited about our impending holiday but I save the information in my favourites and will get back to it another time.  I had better do it before March!



The Agonis Family

The Agonis Family have lived in my front garden for thirteen years.  Rain or shine they never complain, even when one of them died and I was sad but they didn't complain.  Homeless people?  No, four very happy plants which have created a thick lush hedge in my front garden.  I tended them carefully, chatting to them and telling them how precious they were when they were little more than twigs!   The front garden was paved in 2000 and we researched suitable plants and visited local nurseries.  The Agonis plants won out for the hedging and we took five of them home, planting them mid-afternoon, watering and feeding them.  One of them gave up the ghost.  In hindsight it wasn't so sad, because the four remaining took up the whole area between the path to the front door and the driveway.  Today it was time for their quarterly haircut. I only have an old pair of hedge shears, but I was happy with their rustic trim.  I will buy one of those terrific hedge trimmers for Christmas and the Agonis Family will be treated to a celebrity trim in the new year!


The Agonis Family after their trim

Just like the Agonis Family I have friends who aren't bothered that Merv has a disability. They know his condition is degenerative; a long road downhill with resting places on the way.  It's difficult.  Everyone with HD has their own journey and we look at the future to be prepared but we look at today to make the very best of it.

Perfect Day with Spots

Swan Family: Mum, Dad and 4 cygnets

It's Thursday and I thought about the day ahead and how it could work to make Mel's week a time to remember.  It wasn't so special but it was memorable.  We headed off to Hyde Park, one of Perth's oldest parks in North Perth.  There is a easy walking path around both picturesque lakes.  Plane trees and huge Moreton Bay Figs Trees surround the lakes like a living veil.  The warm air of the suburbs is not found here among the shade of these magnificent trees.  If I had a jacket I would have put it on until our walking warmed us up! A number of families with small children and elderly people strolled around the lakes stopping like us to admire the family of swans with  cygnets, almost adult themselves,  the coots and numerous ducks.  We walked around the lakes three times, over thirty minutes before heading off for lunch at a local café.  


Mel dwarfed by a Moreton Bay Fig Tree

I  had already warned Merv's support worker we would be back to change into our bathers before going to the local pool.  Joe said Merv had won both games of ten pin bowling.  Before the sentence was finished Melanie screamed!  We stopped and looked at her.  I don't know what we expected, what could possibly be wrong?   Mel stood pointing at the carpet in the hallway. My one year old carpet on special from Solomans, still expensive with a protective coating.  My carpet all one colour but now with spots.  Not just ordinary spots, but big black blotchy spots.  The spots that would make anyone scream in horror!  I surveyed the damage, I stooped and looked closely before I sprung into action. The black spots turned into Merv's room and stopped at his chest of drawers.  A clue.  I had left the house after they had gone off to the bowling alley and later the pathology clinic.  There were no black spots before I left, therefore they had to be walked in after they returned home for lunch.  Joe said he had
 


View of  the first lake

 

not walked down the hallway but washed his hands in the kitchen.  The clues did not add up. 
White vinegar was of no help, so I grabbed the bucket with warm water and a splurge of carpet cleaning fluid.  On my knees and no more black spots, just wet spots.  I sighed, releasing my tension.  Agatha Christie was now at work deciphering the evidence and writing a plot of how it happened.  Both Merv and Joe sat quietly looking sad and innocent but I knew better. 

Mel and I escaped to the pool walking and swimming in the pool and having fun.  After I dropped Mel home and before I returned home a plot had evolved in my head.  Agatha Christie would have been proud of my detective skills.  My first suspect was innocent (pity).  Merv was the now the suspect.   Joe checked the passenger side of his car to find the tell tale black spots.  

Black Gooey Stuff on Merv's Shoe (left): Mystery Solved

We no longer took a quick look at Merv's shoes but insisted they come off and this is what we found:  the very back of his heel was filled with black gooey stuff.  Black gooey stuff in his heel, in Joe's car, the same which had been found on my beloved carpet.
It had been a perfect day with spots and a mystery solved!


 










Mel's Big Day

Surprise Birthday Cake for Mel
 

Mel's big day has at last arrived.  I rang her at 8am this morning and sang, 'Happy Birthday' to her.  I could almost hear her smiling!  I dropped Merv off at his HD social group, arriving at Mel's unit before 10am.  This allowed us time to arrive and take her cake to her art class.  I made a Weight Watchers cheesecake, which promises 5 points for each slice.  I am sure no one is tracking their points today but the thought is there. 
Mel was dressed and ready for her day.  She was proudly wearing her, 'Birthday Girl' badge and sporting her new haircut.  I dropped off a shop bought cake at Hogs Breath Café before we arrived for lunch.  Mel didn't know about this surprise.  This morning I found little round candles with smiley faces on them in Coles. 
I unexpectedly met up with her boyfriend at the shopping centre and asked him if he wanted to come and pick Mel and her friend up from the art class.  He was happy to do so.  He confided in me how much he enjoys talking and being with Mel.  Sweet words to warm my heart! 


Happy Candles for our Happy Girl
 

We easily found a parking space not so far from Hogs Breath and soon the invited party of eight turned into eleven!  Mel is just the type to invite people when she sees them and not count heads.  It wasn't a problem we just squashed up a little more and added a few more chairs.  Lunch was a $9.90 deal for most and well priced as many of her friends are on the pension and have to watch their expenditure.  Oh yes, I'm also on the pension!  We had the cake after some of the guests had left and there was plenty of cake to go around.  We took some photos and left with pleasant memories of another birthday celebration with Mel.  Every birthday is a bonus to cherish.



The Day Which Stops A Nation

Merv picking horses from his hat

My brother and his wife live in South Australia and they own and race their horses.  I know nothing about race horses or racing them but I do know the second Tuesday in November is always Melbourne Cup Day.  The state of Victoria always has a public holiday to celebrate.  The race is held at Flemington and is firstly about the Cup but also the fashion and even the magnificent roses!  The rest of Australia hold their own parties at pubs, their own racecourse or arrange office lunches with the TV in the corner.  Perth had a record attendance at our own Ascot Racing Course today.

 Everyone dresses up and the ladies compete in wearing the best and often outrageous hat or fascinator.  Fashion features throughout the day at Flemington.  

Damien Oliver Jockey winning his 3rd Melbourne Cup
 

Mel was born in 1979 on Melbourne Cup Day.  Her birthday has fallen on this all important day many times.
We  have stopped celebrating at the local pub but I wanted to make it special for Merv.   I printed the list of horses and cut them into individual strips.  Merv folded them and put them in a hat drawing them out and dividing them into 2 piles.  His horses and mine!  He was happy he had drawn Damien Oliver's horse Firorente.
Damien is a well known jockey in Australia, he comes from a jockey family.  His father died during a race when he was a young boy and his brother Jason died the same way in 2002 a week before the Melbourne Cup Race.  A film called, 'The Cup' was made about Damien's dilemma whether to race in the cup of that year on Media Puzzle.  We watched the film at the movies a couple of years ago and again last night on TV.  It finishes with Damien riding Media Puzzle and winning the race for his brother.  This was the second time he had won the prestigious Melbourne Cup.


Gai Waterhouse, Horse Trainer with her 1st Melbourne Cup Win

Today I made strawberry cocktails served with chocolates and put together warm chicken rolls for lunch.  We sat glued to the TV at 12noon as the race took place in Melbourne.  I didn't give much thought to the horses and their riders, I just enjoyed the pleasure of watching.  The race lasts just over three minutes and right before our eyes Damien spurred Fiorente at the last moment and won the race!  I had a tear in my eye.  He is the only jockey I know anything about!  To top off the fairy tale finish the horse trainer is Gai Waterhouse.  Gai, a vivacious, hard working trainer and she is often in the news. Until today the 'big one' had always eluded her.  A double celebration!
Another year, another winner.  History was made today and I am glad Merv and I were together to witness it.

Life Goes On

Petunias, Marigolds and Tomato plants
 

Merv watering hanging baskets and many pots
 

Everyone is doing something.  We are all busy doing chores, planning for tomorrow and making things happen today.  Today when I re-started the weeding I took time out to check Merv's patio plants.  The petunias are raising their heads to the sun and displaying their amazing array of colours.  Pink, yellow, purple, deep velvet, white and red.  Marigolds on the other hand are always orange.  There is no surprise here.  They shine together in a garden bed or a hanging basket and give joy to the heart. Every morning and every evening Merv is seen, hose in hand watering his precious plants.  Some of them get a little more water than others, some of them appear to be drowning in the puddle from a little inattention.  I am assured by their growth there is no harm done as they wiggle and fidget, fighting to be seen by the sun, their foliage spreading out before them.
Life goes on as it always does and always will.  We continue to be busy, the plants continue to grow and thrive.  I am amused just for a minute.  The moment is not about reflection or stopping to reminisce it's about going forward.  I smile as I see Merv busy watering his plants.


 

Mel's Birthday

Mel Birthday Girl and Dustin

Today is not Mel's Birthday but I made her a birthday cake and we celebrated her upcoming day at Sizzlers Restaurant.  She has insisted she celebrate her birthday at Sizzlers and so be it.  Who am I to refuse?  Mel wore her birthday badge, chose her birthday clothes and put on her make up which Merv and I gave her as a present. Family birthdays are a time enjoyed by all, especially Mel.
Mel's birthday is Wednesday 6 November, Dustin will be at work, Merv is busy and birthdays are always celebrated in our small family.  Dustin ran 5kms this morning in the 'Colour Run' which raises money for charity.  Money is raised for Perth's children's hospital Princes Margaret Hospital.  Dustin arrived here at 1pm and we finally made it to Sizzlers at 1:30pm.  At least we were hungry!  I was surprised to see the restaurant quiet with only a few patrons.  Admittedly it was well after midday but not everyone eats early.  As a family we have frequented Sizzlers many times in the past.  The price was more competitive and buffets were popular. 
We all ordered a main meal and selected a variety of salads from the salad bar to complement our chosen dish.  Merv no longer eats salad but he enjoyed the pumpkin soup and bread roll. After his barramundi main, Merv enjoyed two small desserts; chocolate mousse and later apple crumble with custard.   I added a little dish of smarties and mini marshmallows to keep him smiling.  When I dipped my hand in to share them with him, he scooped them up in his hand and handed me the empty bowl! We were like little kids stuck in a candy shop!


Watermelon base & jelly filling

Yoghurt and fresh strawberries to complete
 

I made Mel a birthday cake with a  difference.  All without: flour, sugar, and chocolate. Mel loved it.  I had wondered what type of birthday cake I could make which we could enjoy after a Sizzlers lunch.  So I created my own recipe:  A watermelon jelly cake.  Yesterday I bought half a watermelon, slicing off a generous plate size piece.  I lined a spring-form cake tin with baking paper before adding the

Birthday Cake Celebration

round of watermelon.  I made a lime sugar free jelly and poured it over the watermelon once it cooled and began to set.  Once set I made a strawberry sugar free jelly and added it to the pan and left this in the fridge.  After picking up Mel from her unit this morning.  We removed the watermelon/jelly cake from the cake tin and decorated it with fat free Greek strawberry yoghurt and fresh strawberries.  Hey Presto, fat free no sugar added birthday cake.  We used sparklers to sing Happy Birthday and Mel loved it so much she asked to take some home to her house mates and best friend!  Yes, Mel will have another birthday celebration on Wednesday.  She may have up to 4 more celebrations during the week with her various clubs and friends.  Every birthday is a celebration and more.


One Way Traffic Without Comment

I knew it was coming but I didn't know when.  It hit me like a runaway train only yesterday.  As I sat down to enjoy a little entertainment last night I promptly fell asleep.  I slept all night and still my body and mind yearned for rest this morning.  My plans to dig and prune in the back garden during the cool air of the morning were put aside and I had what could only be called a, 'lazy day.'  Sometimes we just need a rest and sometimes we listen to our bodies but most of the time we don't!  Instead it hits us fair and square and we have no choice but to listen.  Needless to say Merv had a lazy day with me.  It was too hot to walk later in the morning when my energy level increased slightly.  Instead we played games, read the paper and watched the TV.
A good friend emailed me today and said she had read my blog but was unable to post a comment.  I sent her the procedure for commenting but still it didn't work for her.  She doesn't have a Google account and she was asked for her password.  A number of people in the last few months have said they couldn't post a comment on my blog and therefore I am believing my blog page is at fault. I checked my settings this afternoon which clearly states anyone can post a comment.  Obviously there is an error somewhere I am not aware of.  I spent a couple of hours checking my blog set up and Google search to no avail.  I even sent an email or two to Google in hope I may get a reply! 
If you would like to comment on any of my posts you can also contact me on my blog email: life8angel77@gmail.com   If you have a BlogSpot blog I would appreciate any advice on receiving comments from readers without a Google account.  Hoping to hear from you soon.

A New Home

I know Merv's sister has moved to Ellison House recently.  I haven't seen her since I visited her in hospital after she fell due to dizziness.  I had a slow start to the day and it was after 10am before I rang to confirm Merv's sister was well and happy to have a visitor.  There are often appointments with therapists or specialists whether elsewhere or at the residence.  It is too disappointing to just roll up and find you have wasted time.  It takes over 30 minutes to drive there from my home.
Just like the first time I visited Merv's sister at Ellison House when she stayed for two weeks on respite the staff were friendly, helpful and caring.  I arrived when the weather was warming up but as yet not too hot for fun outside under the shade.  A huge beige coloured sail covers the space between two of the houses ensuring a generous coverage of shade for the residents and staff.  A game of bingo was just about to start and I was impressed the bingo cards have been replaced with A4 size laminated sheets printed with large squares with numbers.  Each number on the sheet has a Velcro dot allowing a bottle top with a corresponding Velcro dot to adhere to the sheet and not move around.  Very clever forward thinking.  A staff member used the bingo wheel and called out the numbers, until one of the residents won the game and it was time for lunch.   I had the opportunity to share my varied holiday photos with Merv's sister and she enjoyed the wildlife photos from Makalali.
I am pleased she is happy and is settling in well.  The staff explained specialists have been consulted to ensure she has the right equipment to assist her in her daily living.  I know Merv will also be pleased.