Christmas Cheer

It's almost Christmas and what have we done (oh I hear the breath of John Lennon in the breeze).  There has been no Christmas Carolling at the local parks, no presents for the underprivileged under the Kmart tree.  There has been very little of anything.  We do have our minuscule Christmas tree with its fibre optic lights which change colour hypnotically.
A change like the seasons was definitely needed.  I promised Merv and Mel a trip by taxi to the city of Perth to see the Christmas lights.  The sunlight fades fast about 7:30pm, therefore a late afternoon trip to Perth was discussed. After a busy day Christmas shopping and enjoying apple pie and cream at the Dome café we all enjoyed a rest in the afternoon for an hour on our beds.  I woke Merv up and slid in beside him.  Something I rarely do these days.  He put his arm around me for a hug.  That was nice.
I rang the taxi company and we waited for our station wagon to arrive.  Instead a huge Maxi taxi pulled up.  Merv was in his wheelchair and they aligned him on their rear hoist and strapped him in.  A view a little like a limo without the wine and nibbles!  Mel and I used the seats beside and opposite
and off we went to the Perth taxi rank in William Street. Merv has 50% off taxi vouchers.  The driver and his assistant suggested we ask Merv's GP for maxi taxi rebate which is 75%.  I didn't know that.  If a person is unable to walk and need a maxi taxi they only pay 25% of the fare. 
We arrived in Perth at 6:20 and immediately hunted out the Christmas decorations and visited our favourite Perth haunts; London Court Arcade,  David Jones and later Myer.
I positioned Merv next to a school boy busker with a trumpet, dropping him a donation in his money pool and taking a photo.  Merv didn't seem impressed!  I thought it was fun.
At 7pm the hunger pangs struck and we sought food.  The only place I recognised was the Coffee Club in Murray street with alfresco dining.  Perfect.  We found a table and ordered hot chips for Merv while Mel and I shared a calamari Asian coleslaw dish.  We were in starvation mode before it finally arrived and we gobbled it up.  Off to Forrest Chase to view the magnificent Christmas Tree ablaze of colour and light.  The City of Perth's nativity play was eye catching and mesmerising. We stood (Merv sat in his chair) and watched as each part of the nativity story was played out.  We took a break to Myer (yes I needed a toilet break) to see their Christmas display.  A little disappointing but at least we went.  Before the nativity finished we were back watching.  The choir were in full song of, "Oh Come Let Us Adore Him." 
I couldn't help myself.  My mouth opened wide and out came the words of the carol.  I was just going to town.  All my loved ones know I have a singing voice comparable to a scalded cat clawing on a hot tin roof.  No pretty sound there. Did that stop me?  No way.  I was going to town.  Mel joined in. Oh how I missed the community carolling!
To finish the choir belted our Rudolf the Red Nose Reindeer and yes I was clapping and singing and moving to the beat. Oh, what the hell it's Christmas for God's sake. 
Then it was over and the old Post Office (which is now everything but a post office) was bathed in lights and Santa and ladders.  Another mesmerising moment.
Time to go home and we took our chances at the taxi rank.  In second place was a station wagon.  I knocked politely on his window and asked if he would take us home.  I knew the taxi sedan in front of him would be ok with this.  He took us home.  Drove through the police breathalyser patrol without being requested to stop.
We had a great night.  Yes I would do it all over again.  We'll wait and see.

Our school boy busker and Merv with Mel

Magnificent Christmas Tree in Forrest Chase Perth

A little Myer Christmas Magic

Merv and I enjoying the Perth Christmas atmosphere

Old Post Office building alight with Santa - amazing

Genie in the Bottle

I've done it before, wearing blinkers while looking for a sophisticated solution when a simple one is looking at me!  Poor Merv he had lost his dignity wearing continence pants which didn't do what they should.  Day after day we battled with wet beds and soggy pants.  There was washing, cleaning and more washing.  I was pulling out my hair by the handful.
We had discussed a bottle.  My thought were concentrated on a bottle of Merlot, Pinot Noir or deep red Shiraz but none of the above.  We were discussing a urinal bottle.  It just seemed so simple.  Mel and I visited the disability store where the assistant discussed the various bottles. We passed on the one with a push on lid.  Merv's fine motor skills no longer do him justice.  We settled on the no-spill bottle which comes in a soft shade of blue and no other colour.  It cost three times more than the one with the lid.
I had forgotten the many times Merv had been in hospital as a younger man.  He took to his bottle like a duck to water!  I had placed towels, mats etc around the proposed area only to find none of these were needed.  The very best part of the story is his bed is dry and his dignity and a certain amount of independence returned.  He still is unable to walk unaided in the house after his fall which damaged his calf muscle.  I am hoping it will heal in time and Merv will be able to walk by himself once again.  I can only hope.
Yesterday his physio and her assistant visited as the afternoon cooled after a heatwave morning.  They had Merv wheelchair walking and doing a range of exercises to strengthen his calf.  They also  showed Merv how to walk to the toilet (with assistance) but stopping at each door frame, holding onto the sides of each frame before moving to the next one.  I would never have thought of that.  He is enjoying this exercise which helps him gain his balance and slows him down.  He has a habit of going ahead at top speed to reach his target.
I sigh heavily.  I am happy not to wash sheets everyday.  Emptying and washing the blue bottle is a small price to pay.

Regaining dignity and independence

Stroke Me Down

"Maybe he had a stroke?  I want you to ask the GP for a CT Scan,"  retorted Merv's speech pathologist.  I grunted, I made all the right noises but I was thinking - 'Get a grip girl, he had a fall, he choked on his lunch and pooped his pants.'  Yes all within two hours from returning from his fortnight respite.
Three days later Merv fell before I awoke.  He was on the way to the toilet.  When I finally awoke, completely unaware of the drama that had occurred Merv was sporting a swollen eye which later coloured to every shade of black, a red ring on his forehead and several bumps and bruises.  I was horrified.  I cancelled Merv's support worker and made an appointment with his doctor.  His doctor of course had a day off and we saw a semi retired gentleman who resembled Kris Kringle.  He assured us nothing was broken, his eyesight was fine and no concussion. 
We celebrated our 40th Wedding Anniversary only three days later, complete with his black eye! Merv and I visited the Lavender Café and enjoyed lavender scones with jam and cream before meeting with Dustin, Grace and Mel for lunch at our favourite local restaurant. Throughout our marriage I had never imagined Merv would be unwell or in a wheelchair.  Life often turns out differently from our dreams of long ago and our expectations to today.  It is a time to reflect and make the most of what we do have.
Nine days after that fall and he still can't walk unaided.  I walk him everywhere in the house. He's wearing continence pants and I wake at 5am to take him to the toilet after having washed sheets and bedding for three days in a row.  Hopefully the early start will continue to be successful in keeping a dry bed.
His left leg is sore and it's time for an x-ray.  I know as we get older (is 62 old?) our body takes longer to heal.  Is it just bruising, the lack of confidence or something more sinister?
Do I think Merv had a stroke?  Probably not but her words encircle my mind causing confusion and indecision.  It's just another busy week ahead with two dentist appointments, two doctor appointment and a number of other commitments. 
I only want Merv to be able to walk around at home by himself again which will increase his confidence and his lost independence.

Break Time

It's been a long month. Spring has lost it's way with below seasonal temperatures and heaters still gobbling up more energy and adding to our power bills.  When I packed Merv's suitcase for his two week respite stay I added a mix of winter and spring clothes.  It is so cold for October.
He seems to accept his fate at his regular respite centre.  He knows the residents, the staff and I know he will settle in well. Dustin and Grace visit each weekend and often take him out for a chocolate drink and cake.  His service providers allow his regular support workers to visit on Tuesdays and Thursdays.  I am pleased he gets some one to one attention.

As usual I just feel guilty.  I always feel guilty but what can I do?  I just need a break from the humdrum of everyday life.  There are no weekends off, no public holidays just four weeks a year respite.  Admittedly we have support workers visit each week and Merv attends two day centres during the week.  There are no set times for being a carer.  My job begins the minute I take over from the support worker and I get a break when he is tucked up in bed after another long day.  His personal care needs attended to with precision and care.  Then it's time for me to relax before I head off to bed to start all over again the following day!
Knowing there is time to stop during respite to smell the roses, to recharge my batteries as one would say which proves just the thing to keep me going.  There are times when I'm happy and joyous and other times when the world appears to sit upon my shoulders bending my spine and kicking my confidence.  I cry, I scream, I swear before I pick myself up, dust myself down to start all over again.  That is just how it is.
I often like to travel abroad during my respite break but this time around selling our house to downsize (especially the garden) is taking most of my time.  My family are helping with the garden this weekend.  I've ordered the mulch, compared prices for plants and hanging baskets while balancing my time to rest, catch up with a movie or two and spend time with friends and family.
Yesterday my sandstone floor which I love was cleaned and resealed.  Was it really that dirty?  Yes it was but it looks amazing now!
Between work and play I have enjoyed both worlds.  I spent 3 days last week travelling down south to visit family and friends.  I had an amazing time.  Just to relax, have fun and not worry about the time was rejuvenating to my body and soul.

Merv enjoys an outing with Dustin and Grace last week

my lovely cleaned and sealed Sandstone floor

Next Monday Merv returns home.  I look forward to seeing him, sharing a hug and my adventures before once again resuming my carer/wife role.

Four Funerals and an Engagement

I have many favourite movies.  One of them; 'Four Weddings and a Funeral.'  There is a group of friends who attend each event.  That how it is with the group of friends who attended the funeral this afternoon.
In the last twelve months I have been to four funerals, zero weddings but there's a family engagement in the planning stage.
Each month our carer group congregates to share our stories, whether as wives or mothers.  The person we care for has Huntington's Disease.  We share our stories, we cry together, we laugh together.  Sometimes we are despondent, sometimes angry but always we battle on.
Today we supported our carer friend at the funeral service of her husband.  He was just shy of seventy years.  He was HD symptomatic since 2003.  Many in our group have already lost a loved one to HD.  I can only imagine how hard that is.
Losing your loved one is so very difficult but in a way they are lost before they physically leave us. 
In a month's time Merv and I celebrate forty years of marriage.  As a surprise I am creating an online photo book of our forty years.  What I thought would be lovely has turned into a nightmare.  To begin my project  I scanned over three hundred paper photos after sifting through hundreds of photos and choosing the most memorable. 
I smiled, I laughed, I winced, I cried.  Hundreds of photos of my man walking, climbing, playing, laughing, working, smiling and best of all enjoying life. His memories of the past are beginning to slip away.  His joy of life replaced with complacency.
He sits by me but I don't know where he is. The man I married no longer lives with me.  He no longer does any of the above, except I have witnessed the occasional laughter and cheeky smile!  Otherwise he has long ago deserted me.  There is no looking, no searching, the man I married and loved has just gone.
The saddest thing of all is knowing he is never coming back.

Daffodil Day

Today is Daffodil Day.  A bunch of bright yellow daffodils delight me in their coffee jar.  They sit tranquil on my kitchen bench.  I didn't have to think about whether to buy them, I knew Daffodil Day was coming.  I know the money raised from their sale goes to the WA Cancer Council, it is the very least I can do. 
Mel bought two bunches.  One for herself and one for a friend celebrating her birthday.  I told her to tell her friend the money raised goes to help those with cancer.  Damien would be proud of her.  Damien has been gone only eight weeks but it seems so much longer.  I still shed tears when I retell his story.  His sad childhood, his lung cancer and finally how the cancer stole his life when he and all those around him least expected it.
Mel and I had hoped to help out at a stall selling daffodils but there were no stalls which needed help.  Maybe I enquired too late.  Anything too hard in my busy life and I find it easier to just put it put aside. Therefore it was easier to purchase bunches of daffodils.  I don't feel bad about it.  Another time, another year we may have the opportunity to help more. 
Mel's online photo album we put together arrived this week.  The postman knocked on my door and personally handed it to me.  What a lovely postie we have!
Mel and I found an online site which allowed us to chose backgrounds, scrapbooking pictures to add and a variety of choices on colours and sizes.  We spent two mornings putting it together.  Choosing the right photos, putting them in order.  Mel choose the colours, backgrounds and scrapbooking pictures.
 It can be difficult to entrust a company to provide what you hope will be a keepsake.  Mel and I opened her photo book together. It was exactly how we had hoped.  The treasured photo book is a delight as it tells the story of Damien and Mel through chosen photos.

Volleyball Illusions

After my Mother died Merv took thirteen days before he hugged me.  He often says very little.  Mostly he says nothing at all.  He may smile, grunt, groan or nod but language seems to be forgotten.
He never said anything when Damien passed away.  When we visit his sister I smile (very nicely) and suggest he says 'hello' and 'goodbye.'  Otherwise he is mute throughout our visit.
Food is a subject which provokes verbal language in Merv.  Cheesecake, apple pie and scones with jam and cream are what I would term, 'reactive words'.  Say any of these words and you will be greeted with a smile and a big YES. 
But I have been duped.  I found out only this week.  Merv is a big AFL (Aussie footy) fan and enjoys most sports.  The Olympics has us up and ready earlier in the morning while I search the app to find the events we want to watch. 
We both love the swimming, diving, gymnastics, track and field and the list goes on.  Merv is rugged up sitting on his lift chair with his feet up.  I duck in and out of the room while completing daily chores.
Now you might wonder how I have been duped (scammed, tricked, fooled) by my dear husband. This is what happened;  We are sitting at the kitchen table.  He is tucked in on  his disability chair and I am perched on my chair ready to get up at any moment to complete more chores or answer the phone  or whatever.  Suddenly Merv leans over and starts talking.  Yes talking, not slurring.  Talking like he used to as if his disability just went running out the room.  What did he talk about?  Himself?  His family? 
Not on your life.  He started talking about the Australian Women's Olympic Volleyball team.  I am sure he could have told me the names of their families, their day jobs and where they live.  He was suddenly a fountain of information.
I stared at him and simply said; "I don't even like volleyball." (Looking at those skinny girls barely wearing anything while prancing around on the sand has me grabbing the remote to change the program).
Then it was over.  Once again he was mute.  I had lost the moment just because I don't like volleyball.  Surely I could have pretended? 

Teary

The young US swimmer who won Gold in the relay with Mark Phelps doubled up with emotion immediately after their swim.  He cried openly.  He was overwhelmed with his team's win.  His elation was heart wrenching. 
I cried with him.  Lately I cry at anything and everything.  I cry when others cry whether they're happy or sad.  I just have tears running down my cheeks, a lump in my throat stifling the sobs.
My counsellor said to me today that's quite normal. 
I don't want to be normal anymore, I just want to be happy.   I'm usually pretty good at being happy but lately happiness is evading me.  I've started looking for it.  Surely that is a good sign?
My counsellor asked me what causes me to cry over Damien.  It isn't like we had a mummy/son relationship, at least not until the last weeks of his life.
I explained that I cry because I couldn't help Damien anymore in the last few weeks of his life.  He was beyond my help.  I'm the type of person to explore and initiate practical things with a twist of celebration.
Like an early birthday celebration or a visit to a favourite movie.  A picnic or family get together, Places and times where memories are made.
But it was way too late.  His health dictated what he could do which was far too little.  If only we knew how quickly he would go.  We thought there was time but his last weeks were within a hospital room.  No one knew, not us, not his oncologist, neither his family or even himself.
Was it the shock of his sudden death?  Or because he was only 35?
It was all of this together which pulls at my heart strings and brings great waves of sadness. 
It is what we go through when a person we know dies. 
What if? 
What if I did something different or why doesn't it seem enough?
It almost seems as if we did nothing at all.

Damien & Mel last year for her birthday

A Duck's Life

I sensed they might just step off the kerb in front of me.  I was driving with caution as I saw their large family test my stopping ability.  The daddy stepped off the kerb followed by his many children and then his life partner.  I came to a sudden halt and hoped the car approaching in the opposite direction would do the same.
I grinned at the family and settled in for the long haul.  It can take a while for ducks to cross a busy road with their tiny ducklings in tow!
With all the sadness, grief and lately home renovations it was a delight to watch the ducks cross safely across the road.  A little big of 'sane-ness' in my topsy turvy world of late.
It's has been a month since Damien died.  Mel is full of grief and there is nothing which can be done but allow her to grieve while I hold her hand and comfort her.  It is essential to grieve, it is the healing process.  I am her mother, I worry as mothers do.  I know she will recover and life will be roses and singing birds in the future but not at the moment.  She is just sad.  Sad on the inside.  I am sad for her.
Damien's cousin rang me during the week and we chatted together.  She mentioned they had found I card I had written.  It just had my name and phone number and stated if I could help in anyway that I would.  She told me she had the card and read it to me and I cried while I spoke to her sitting in my car.  I wanted so much to be able to help while he was alive but it was already too late.  The cancer was too advanced.  I imagined we could celebrate an early birthday or go to the movies but it was never to be.  He was just too ill.  I cried for his life lost.
Recently I buried my thoughts in home renovations.  I have a brand new laundry and a new dishwasher and kitchen appliances.  It has kept me busy from my thoughts but with renovations comes sorting out rooms and displacement of stuff.  We all have 'stuff,' I seem to have quite a bit of it at the moment.  Some of my laundry stuff is still outside waiting to be sorted or chucked.  My linen is still in the spare room awaiting the same fate.  I'll get around to it.
This week Mel and I are putting together a photo book with her precious photos of Damien and herself.  She will treasure it.  She has planned 'Damien Days.'  A time to reflect the things which Damien enjoyed doing, eating or visiting.  I just call healing.
My mind is rather jumbled but the memory of the duck family today brings me pleasure and a reminder that all will be well.  It is just a matter of time.

A Life Lost Too Young

On Saturday 2nd July 2016 Damien, aged 35 left this world.  He passed peacefully early in the morning.  I wish we were there to hold his hand and reassure him.
Mel had visited everyday to hold his hand, comfort him and provide him with whatever he had asked.  I had accompanied her ensuring they had plenty of time just the two of them.  On the day before he died I held his hand briefly and told him to hang on.  Fear vibrated from him after the nursing staff inserted a morphine drip in his side.  I could see he no longer felt invincible.  The truth and reality of the lung cancer threatened him and sadly took his life. 

A life cut short far too early. His oncologist gave him 2-3 months but he took his last breath only 16 days later.  His mother and siblings arrived from interstate the evening after he passed.  No one had expected his death so soon.
Mel was racked with grief as she heard the news on that fateful Saturday morning.  
His funeral was packed full of family and friends.  Mel was welcomed into the inner sanction of his family as she placed a red rose on his casket and her name mentioned many times in his eulogy.  Ed Sheeran's song; 'Thinking Out Loud', was the song played as mourners entered the chapel.  Damien and Mel's favourite song.
Mel and Damien were together less than a year.  Their engagement broken off after only a month but they remained in love as boyfriend and girlfriend.  Their love for each other was the glue which kept them together.

Chilling News

I wonder what the oncologist thought as he delivered the bad news to the young man telling him there is nothing anyone can do.
I wonder if he went home that night and hugged his children with more affection.
I wonder if he warned them of the dangers of smoking telling them of this young man lying in his hospital dying.

I wonder if after he had passed on this devastating news he thought about this young man coughing, spluttering, relying on oxygen to breathe and pain killers to get through each day.
A young man only 35 years of age whose dreams were shattered in a moment.  There will be no more future planning.  All dreams of his future gone.

His girlfriend sits awkwardly on the young man's hospital bed.  The dreams of their future replaced with the fear ahead.  Weeks maybe months of pain before the end.
She holds his hand and speaks kind words but her head and her heart scream in horror.

His girlfriend's mother cries for his pain and for her daughter's grief.
After he is gone how will her daughter cope?

The girlfriend's mother remembers her father dying of lung cancer over twenty years ago. 
Recently she lost her mother.  She relives the grief of her father while still grieving for her mother.

The young man recently spoke with his mother, brother and sisters.  He has had little contact with them for almost half his life but now they are arriving next week from interstate to say hello and their final farewell.

This is not how he had pictured their reunion in his mind.

So much heartache and grief for all.  His family, his friends and himself.
The reality has yet to sink in.  He was jovial last week but now his hospital food holds no temptation.
The cancer continues to steal his life.

I am the girlfriend's mother.

Weeds and Other Interruptions

It's cold here in Perth.  Actually its been colder than usual for this time of the year but the garden weeds are enjoying the rain.  They are growing happily at an alarming rate.  I look at them; I can almost see them growing.  I ponder.  I imagine I am ripping them out of the ground but I go back to whatever I am doing.  It is warm inside and cold where those dreadful weeds grow.
It's almost a month since Mum passed away.  Photos of Mum still adorn the side of my fridge. We are still sorting things out and thinking in the past instead of the present.  I can't think of Christmas or Easter or Mother's Day without her.
I know my Mum (when she was physically able) would be outside ripping those weeds out of the ground but today I have no energy to do the same.
Mel's boyfriend (who she was engaged to in January but decided by February it was all too stressful for her) has been in the local hospital three times in the last month.  He has lung cancer and was diagnosed a fortnight ago with pneumonia.  Due to his cancer it is taking a long time for his body to recover.  He went back into hospital on Thursday after being home for only four days and he is still there. 
I don't know what to make of it.  He is on oxygen and an IV drip. Will he get better or will he just get worse?  Cancer is rarely forgiving.  He hadn't take his cancer medication for sometime and last week he resumed smoking.  I shake my head in disbelief.
I am despondent.   Not for me but for Mel.  She is not good with stress.  Not only has she recently lost her Grandmother but she is now running around and being an emotional kick bag for her boyfriend. 
She rang this afternoon as she often does.  She said she just wanted to cry and like all mothers I offered her what we consider words of wisdom.  We ended our conversation by arranging for her to stay with us tomorrow afternoon for a few days to relieve her stress.  I hope it helps.
Life is tough for many of us but I long just for a few weeks of so called normality.  I hope Mel's boyfriend recovers well enough to continue life as it should be.  He is only thirty five.

Party Poopers

Whether it's a party, get together or a fundraiser, there is no difference in people's reaction.  The group we're supposedly mixing with is nowhere to be seen but we can hear them laughing, sharing jokes and being jovial.  Just the way it should be.  Yes I agree, which is why I decide not to be part of it.  It's just too difficult.  If the group is outside in the chilly autumn air it's no good for Merv.  Just an everyday cold can turn into a lethal bout of pneumonia for him. 
I could chose to join the group and leave Merv by himself but I can't do this without berating myself, therefore we stay in the warmth of the room inside but there is no one to chat with so we sip on our drinks and I pour myself another wine or make another coffee.
I noticed people greeting Merv as his hand wavers in weird gestures in front of them as he endeavours to shake their hand as he used to do. I wonder if they are embarrassed or confused.  They remain motionless but some of them manage an animated wave.
Then they move on chatting and laughing to those who can reciprocate.
We recently hosted a get-together in the evening.  Everyone went outside or in a separate room and we were left in the kitchen/dining area.  There were people coming and going, helping to take things outside or helping with the cooking and serving.  I'm glad our guests had an enjoyable time together but we will be steering clear of further get togethers. 
Our friends with partners with HD and others where one partner has a disability physical or mental say exactly the same and experience the same behaviours.  The funny thing is when we get together with our HD/disability partners we sit the partners together. They sit and stare at one another while we sit, chat, laugh and have a whale of a time.  Then we remember who we are and feed our loved ones and encourage them to be part of the conversation before we go our separate ways.  Yes; they're just fed up and don't want to do anything but just go home.
It's just the way the world is.

Late Breakfast

I left a message with the person in charge almost a month ago.  A fortnight later there had been no response.  I left another message.  I was left hanging without an answer.  It seemed rather trivial and I didn't want to cause trouble but neither did I want the issue to be left unanswered.
A questionnaire arrived in the post from the same place I was trying so hard to contact.  This was the answer I had been looking for.
Merv had been in respite for two weeks and the day I picked him up he had yet to have his breakfast.  It was already 10am. I had eaten my breakfast hours before and was thinking more about morning tea!
I had enquired why he had to wait so long.  They said they had been busy getting others ready for outings but I was disturbed at the lateness of the hour and their lack of time management.   I voiced my concern while Merv chomped away on his porridge. 
The respite itself had gone well it was only this hiccup at the end.
A month later, two phone calls and a completed questionnaire I finally received a call from the staff member who manages the questionnaires.  She said she was appalled at the lateness of Merv's breakfast and the lack of response from relevant staff.  I agreed with her!
The lady had contacted the staff member who was under the pump in his work but was also apologetic as he had not returned my calls.   I have met this man in question several times.  A nicer and more gentle man would be difficult to find.  A more efficient gentleman than most. 
Thinking about him I would give him a tick, tick, tick but now he has a black cross as well.  I hope he doesn't stumble over that one!
I sigh... another situation shelved and put to rest.   Only the other day I contacted work friends I haven't seen for sometime.  They have rallied around to get me out of the house and help me keep my sanity intact!  We're booking a fortnightly get together at a coffee shop late afternoon on a Tuesday. 
I contact Merv's support agency and request a support worker to stay with Merv while I'm away.  It's only Friday but Tuesday is just around the corner.  They promise a support worker but so far I can only rest my sanity on a promise. 
If the weather is fine on Sunday I will take Merv to the movies to see Florence Jenkins.  It should be funny.  I am trying hard to make my caring role work without floundering. I have also booked Georgy Girl at the Crown Theatre in July.  We were fortunate to obtain wheelchair access tickets.
We both remember the 60's and The Seekers were a large part of Aussie pop music.  Did The Seekers go to London during their heyday and have hits there?  I think so....

A simple bowl of porridge

Big versus Little

Tell me is it the big things or the little things?  We often think it must be just the big things.  Major stuff like; death,  sudden impairment, maybe a drug or drink problem.  Of course those things are life changing but life changing also occurs over time.  It is like a cancer spreading it tentacles and snatching what is good and replacing it with what is unusable.
I go shopping every fortnight and being the creative person I am I look for activities which Merv is able to complete.  He can count money and tie plastic shopping bags into a knot to put in my plastic shopping bag holder! 
Hmmm those dreaded plastic shopping bags do come in handy at times.  Not so long ago I was rather green and possessed a bundle of material re-usable shopping bags.  All of which were either lost, given away or fell apart.  I now have re-useable fruit and vegie bags which little sis and I bought from the Eco shop a few weeks ago.  As one good eco attempt follows the other I am now collecting more material shopping bags and collecting less plastic at the check out.
I went shopping almost two weeks ago and had a bundle of these unattractive grey plastic bags.  I asked Merv as usual to tie them.  He tried and he tried again but his motor skills have diminished.  He was unable to tie them into a lose knot. 
"Damn it!" I seethed through my teeth.  I will just shove those damn bags (without tying) into their holder which hangs inside my pantry wall.  I wasn't angry at Merv, I wasn't angry at the bags I was just letting off steam because it's the little things which play havoc in our lives.
Merv also stopped crossing off the day on his bedroom calendar.  It has pictures of players in his favourite football team.  For years he has methodically crossed off the day before getting into bed at night.  Then it stopped.  I encouraged him to restart but to no avail.  Reluctantly I took away the pen which has sat in anticipation of the nightly big 'cross off.'   Another ability lost.
Huntington's Disease affects both the muscles and the brain cells. 
I haven't cried this week.  I am in control.  At least I tease myself I am.  I don't know where I am going or how I will get there.  I just keep doing the expected things each day in hope the sun will continue to shine and I will source the energy to keep going.

Dreaded no green shopping bags

keeping the dreaded bags tidy and out of sight

Flu Jab

Across Australia people of all ages are lining up at Flu Clinics to have their flu jabs (injection).  It's no different in our family.  Yesterday Merv's support worker took him to his medical centre for his.  Mel went to her medical centre yesterday afternoon for hers and today I went to my medical centre for my annual jab.  We have been doing this for years; always thankful we wont be getting the flu anytime soon.  The three of us now attend different medical centres.
Lots of my friends and a few acquaintances will share their; 'no flu jab stories.'  It is always the same and goes like this. 
"I never needed a flu jab before because I never got the flu and if I did it was just mild.  Then (date supplied) I was so sick I couldn't get out of bed and I THOUGHT I was about to DIE!  From now on I'm going to have a flu jab every year!"
Last year a good friend confided her own story with us.  She had gone to Melbourne with her husband during winter to see snow for the first time.  They had planned to go to sunny Queensland after a week in enjoying the snow.  Their journey was cut short when the lady came down with a bad case of the flu only a day after arriving.  Home they went and completely missed their well planned holiday.  I bumped into her recently and she made a point of telling everyone she is booked in this month for her flu jab!  Good for her.
At my medical centre the flu clinics had already finished, therefore I made an appointment with my doctor and the nurse later gave me my flu jab.   It worked out well as I needed a repeat prescription.  I also choose to tell my doctor what happened last week when I had an emotional meltdown.  I cried, she listened.  She was lovely. We both agreed it is my grief and loss which I am dealing with.
It's important for the professionals in my life to know how I'm going in my journey.  I have emailed our social worker.  She works with people with HD and their carers all the time.  She knows Merv, myself and our children.  She can see things I am not able to.  I am hoping she will provide me with useful information and advice.
This week I'm feeling much more in control and confident in my journey.  It's just one day at a time and I'm pleased most of them are good.

Flu Clinic - line up please!

Turning Tides

It was long ago in January 1996 when it first happened.  I had gone to bed and in the middle of the night I woke thinking of my father.  He had died the month beforehand.  My daughter at the same time had been hospitalised with psychosis and Merv had also been in hospital for an operation.  Three different hospitals all at the same time.  Merv recovered well.  Melanie improved but was plagued with ongoing mental health issues.  My father died.  I had cried many times but I had not yet grieved. 
I remember that warm January night; I began to cry but my soft tears turned to sobs and then I started to scream and sob at the same time.  Merv woke and reached out for me.  He cradled me in his arms and calmed me.  It was a release of my grief.  I had woken our children (then in their teens) and they asked me the next morning if I was alright.  Life continued.
Whenever I thought about my explosive grief on that night in January I was always thankful Merv was there to comfort me.
Twenty years later and Merv had just come home from respite.  We are back in the carer's role and all is well.  I know he might wet the bed as his routine has changed.  Two days later we have a speech pathology appointment across town.  I am ready for any scenario today.  I wake Merv and I smell the unmistakeable odor of urine.  I strip the bed, shower Merv and get his breakfast.  All is still good.
As he finishes his breakfast he stands awkwardly and rushes off to the toilet.  It is not urine this time but the other.  It is everywhere and there is no way I can clean him, the toilet, his clothes and get him to his appointment on time.  My world begins to slip from beneath me. 
I leave the room and seek refuge in my bedroom.  I am distraught and I cry and scream until I can no longer bear the torrent of grief which runs unabated from within me.  I tell myself to stop.  Over and over I beg myself to stop until I eventually do.  I sit on the bed and wonder what has just happened.  I am a mess.  I know this is so much more than toilet accidents. I have cried many times in the past 20 years but nothing like this.
Once again it is consuming grief.  Days later I think about the HD carer meetings I attend monthly.  They have been more than confronting with horrendous carer stories.  I had avoided thinking it could happen to me, but I see now my story is the same as theirs.
It is the grief  of losing the man I married almost forty years ago.   Grief of making the most difficult decision of all to place him in a residential care facility within the next 2 years.  Grief of not being cared or loved by Merv.  I know he loves me but how sad is love when it is can't be expressed. There are no hugs, no comforting words, there is nothing.  He says and does nothing.
I shower him for the second time in an hour, clean the toilet and floors and spray the matter off his clothes with the garden hose.  I ring the speech pathologist and cancel the appointment.
I send Mel a text message and asked her for a hug.  She rearranges her schedule and after Merv is sitting in his lounge chair watching his favourite movie I drive to Mel's house and we hug before heading out to Yahava coffee house where we sit in the sun drinking coffee, eating mandarins and sharing my grief.  After an hour we return home and Merv is still watching his movie.  I am alright, he is alright.  Life is alright again.
I reflect on the past two weeks of respite.  I have enjoyed each moment of freedom.  Is it cruel to name it freedom?  I have trusted the respite centre, visiting family and support workers to look after Merv.  I have kept in contact by email and photos.  There appeared to be no problems. 
In just two small weeks I joined the HD Carer Retreat enjoying the company of other carers while visiting local cafes, restaurants and places of interest.   Afterwards I went to Busselton with Mel.  Time was our own.  It was so good not to be on a time schedule.  We were just a short stroll away from the beach and the town centre.  We walked and ate well.  It was just delightful. 
After we returned to Perth my sister, Maureen visited for the weekend and we enjoyed just going out for dinner, the movies, shopping and stopping at little fresh food stalls in the Swan Valley.  We ate home made ice cream in a rustic shed which I had never noticed before.  The weekend was delightful, better than an overseas holiday!  It was all the things I needed to do before donning my carer's hat once again.
I've had the time of my life during respite and I've cried this week until I could cry no more.  Today I added strategies to help me cope better.  We can do this together but the road ahead is bumpy.  There will be more trauma but like they say, "It's just one day at a time."

Carer's Retreat sharing platter

at Cheese Barrel Restaurant - Yum

Mel - Busselton on the Beachfront

Dining Vietnamese

in Busselton

Carer's Retreat Koalas at

Caversham Wildlife Park

         

Delicious dinner with Maureen

at the Rose & Crown

                   

   

Sunday Brunch Pancakes

Bonsai viewing Sunday morning

I Lied

There are little white lies, big fat lies and lies of many colours. I think mine was just a white one.
I joined a new book club in February this year.  A book club with a rocky past.  All the other members have been attending for sometime.  They all know each other and share their lives both past and present. 
The very first attendance on a Thursday afternoon my treasured book club was cancelled only two hours beforehand.  There was a power cut which wouldn't be fixed for over four hours.  The book club was rescheduled for the following week. 
They welcomed me, a stranger in their mist sharing titbits of their lives both past and present.
This month I received an email saying,  Joan, Doris and Sylvia hadn't read this month's book and shall we meet next week?  I sighed with frustration.  I had already arranged for the Support Worker to stay an extra two hours and I let the book club facilitator know I had to cancel with 24 hours notice to prevent losing Merv's hours.
Then another email.  The book club was cancelled this month but come rain, hail or shine it would be on in April.
At least the facilitator  replied promptly by email saying we would be discussing this month's book and next month's book in four weeks time.  I sighed again.  I don't think there will be much book talk happening.
Then I lied!
I didn't tell the support worker's agency the book club had been cancelled.  My two extra hours were available and with my book in hand and book club chatter lies on my lips I escaped out the door into the big wide world!
No one would consider a thirty minute stint in the library would be fulfilling but I had the time and opportunity to chat to the senior librarian about my amazing adventures at the recent Writer's Festival in February.  I had her spellbound!
Then I parked my car in a tiny historic town close by taking the opportunity to delve into little shops of  creative arts and crafts.  I finished my time at my local coffee shop with my favourite coffee and a sweet treat.
If next month's book club is cancelled I wont hesitate to enjoy another two hours of glorious white lie freedom!

Charity Bequest

It's been a busy morning.  After getting Merv ready for his day centre I am doing my usual one hour walk around the block.  The weather is already warming up and I leave in haste to get back to my nice cool house.
I ring Mel and leave a message.  She rings me back and we chat.  My iPhone rings again.  It is the speech pathologist booking an appointment for Merv.  I continue on my walk stepping up my pace.  I am sure I slow down while chatting on the phone.  A police car with lights flashing has pulled up a young couple on a side street.  I strain to hear the ongoing conversation but the traffic noise drowns it out.  They appear quite comfortable even with the flashing lights.  I turn my attention to the path on the main road which appears before me. 
My iPhone rings again.  It is CBM (Christian Blind Mission),  a charity group which I donate to occasionally.  I possess their annual prayer diary and religiously pray each night the caption for the day.  They help the disabled in third world countries.  I wait for the lady to ask for a donation.  She tells me she isn't going to ask for one.  There is always a catch.  I walk waiting for her spiel to start.
The lady tells me her name but it is soon forgotten.  She tells me about some of their ongoing projects and how immense it is to fund all of these.  I'm still waiting for the catch.
She asks me as I stride along if I had considered leaving a bequest for CBM in my will?  I think about this.  I have read about it on the back page of their prayer diary.
Then I tell her that could be possible because as things stand now I will possibly outlive my husband and both my children.  There will only be me left. 
I tell her about the Huntington's in my family.  I don't know why but she asks me if they are symptomatic.  I inform her they are not.  My memory just for the briefest moment remembers long before they are symptomatic there are ongoing mood changes ten to fifteen years before onset.  I don't know why I wasn't informed of this as Merv and I had years of marriage counselling (my mother said she didn't believe in this, she would just throw a plate at my father to resolve an issue!) Merv who was always a gentle soul suddenly argued continuously, showed hostility and aggression towards me.
Now I find out a simple trip to the neurologist and a little pill could have stopped all that!  I really thought it was male menopause and I would often drive for hours at night just to get out of the house.  I even considered buying a ticket to Queensland and changing my identity.  The things we consider when we can't find an answer!
Back to my phone call at hand I tell the nice lady about the gene silencing drug being trialled at present. It has been trialled in mice and monkeys.  At present there are three human trials happening in different countries.  The drug has even been known to reverse some of the symptoms of HD.
We finish the conversation and I once again increase my walking pace.  I ponder as I walk.
Hopefully my kids will be at my funeral.  That is what I want and that is the way it ought to be. 
If so, I will leave my money to my kids, they just might find use for it. 
I can have all of these conflicting thoughts but often the reality is different.  We will wait and see.
If this drug doesn't work then we live in hope of one that will.  We hope that it isn't too long to wait.
I saw my counsellor only two days ago but I find I need to chat to relieve my stress.  Maybe the lady on the phone also needed a break from asking people about their will? 

Guilty Holiday

Merv has a great life except that he has Huntington's.  He sits around all day watching TV,  playing games and listening to his iPad with a constant buzz around him.  He is washed, dressed and pampered while all around there is a hive of activity.  He just sits and smiles while listening to his head-banging music of the 60's and 70's.  I even made a new playlist of his songs.  What I consider; 'nice easy listening songs' and I titled it, wait for it, yes,  'Happy Wife'.
I shouldn't feel guilty but I often do.  To ease this guilt I booked a four night holiday in the town of Mandurah.  I booked it for Merv.  When was the last time he enjoyed a holiday, which wasn't respite?Mandurah was once a sleepy holiday hollow of beach shacks one and a half hours travel time south of Perth.  Nowadays with a mostly efficient freeway it is reduced to an hour and the town is more a bustling city with expensive homes and the occasional out of place beach shack.
Near the marina is a collection of chalets where we have booked a disability unit.  We have stayed there several times before.  It is close to everything and a pleasant stroll with Merv's wheelchair to local attractions and shops.  Even the fish and chip shops are close by much to Merv's delight!
I asked Merv what he would like to do while in Mandurah.  I imagined he would ask about the Pinjarra historical area where he can indulge in fresh scones and cream.  I wondered if he would chat about the Peel Zoo where we went several years before. 
He answered he wanted to go to the movies.  "Oh,"  I said.  There are plenty of cinemas close to our home but he wants to go to the movies while away.  So it will be.
I am looking forward to seeing my sister Maureen as she lives in a community close by.  There is a free community concert one evening on the lawn adjacent to our chalet.  Hopefully no head-banging stuff.  I envisage myself lazing in my outdoor chair, sipping on a nice glass of wine while being wooed by the strains of music from the stage.  In reality I'm sure its alcohol free but there's nothing like a day dream!
Dustin and Grace are staying in their own booked unit for a couple of nights.  Dustin is taking the outdoor chairs for the concert in his boot.  My little Hyundai will be filled with the wheelchair, bags of clothes and small eskies filled with delectable delights of the palate.  Other household bits and pieces will be crammed in places you wouldn't expect and may not be found for several days after they are needed!
I will suggest the Pinjarra scones and cream and the Peel zoo.  Most of all I look forward to walking along the estuary enjoying the view and breathing in the sea air. Mel more than anyone loves spotting the pelicans on the water or flying high above.
Whatever we do will be just fine.  I hope the weather is kind, not too hot.  Anything around 30c will be appreciated and no rain please.  My link with the good Lord above isn't always reliable.
Even guilt can be a good thing.  A four day holiday with fresh sea air.  It sounds good to me.

Pelicans are often seen in Mandurah estuary

Respite in Waiting

Its been far too long since I enjoyed respite.  Memories of my month away in England last July are becoming decidedly blurry!  The 304 km walk, was it really a holiday?  Maybe not but it was all in all still respite.  No need to shower Merv daily at 4pm and arriving home three times a week in time for the support worker to leave.  Yes it was still respite.  My five day holiday in Bath (where the Roman's built their hot spring baths) was wonderful.  I enjoyed every moment of my freedom.
I normally have four weeks respite a year.  The first fortnight includes the three night, four day HD Carer's Retreat and then thereafter whatever I have planned.  The second respite is usually booked around October.  In the past it has included oversees adventures or a train trip to Darwin plus a few days enjoying the sun.
Nothing is simple in this world!  Funding which came from Commonwealth Carelink is now dependent on NDIS (a new government disability insurance fund) which funds Merv's community services providing the funding for his April respite.  If not the bill for his respite is over $700 and I haven't budgeted for it as yet.
So far nothing is booked for October this year.  Still waiting to see what will happen with Mel's weight.  Will we be jetting off to Paris or not?  Who knows.  The weight loss is getting more difficult and the more we both stress the more I realise my respite is urgently needed!
In April the annual HD Carer's Retreat happens but it is booked in chalets only three minutes from my house and a holiday doesn't seem like a holiday when its on your doorstep! The day after it finishes  Mel and I are heading by train to Busselton for five wonderful days.  No car, just walking and enjoying life.  Busselton is a laid back beach town 220 kms south of Perth.   I have been there over one hundred times but its a great place to swim, walk and just relax.
Altogether I will have a fortnight of respite.  There is multitude of things still to do at home, including sandpapering peeling paint.  I look at it and consider my options.  I will decide whether to get inspired with paintbrushes and sandpaper closer to the time.  I know if I get it done, done it will be and no longer an eyesore.  Yes I push the thought aside, there is the garden to consider and a whole range of other options. 
I would like to go to the movies and sit right at the back.  I imagine myself climbing every step to the top.  When I take Merv to the movies we take his wheelchair and we take the seats for those with wheelchairs or mobility issues.  I want to feel just like everyone else, even if its just for a short while.  I want to go into the city and see the new Elizabeth Quay everyone is raving about but I will find out if its wheelchair friendly so I can later take Merv there.
My life is about finding out what is and what is not wheelchair accessible.  This Sunday for Valentine's Day Merv and I will go to Sorrento Quay up the coast a bit.  We will take Merv's wheelchair and enjoy morning tea in the Dome Café which overlooks the crowded marina.  Merv will enjoy his apple pie and cream and later we will share fish and chips together and a walk around the quay before heading home.  No cards or chocolate this year.  Maybe he will say Happy Valentine's to me.  Maybe he won't, but we will have a nice time getting out of the house.
Respite is still a few month's off and I wait in anticipation....

 Busselton by the sea