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.