Best Behaviour

It's almost February, not sure what happened to January.  Merv has known for over a month that he will go into permanent care.  After visiting the facility with him four weeks ago I answered every phone call with trepidation.  I thought the call to say they have a room for him would come quickly but it's still an unknown.
I have booked future respite because I just don't know when that dreaded call will come.  I have said to myself I have to say "Yes".
The sad fact being you only secure a room when someone leaves.  They usually leave because they have departed our world.  That is the sad fact of a care facility; it is usually the last port of call before you are called home.  Yes, I know that's just how it is.
Since our tour of the care facility and a nice little chat with the Admissions Officer, Merv has been on his 'best behaviour'.  At least this has made life a little less stressful but there's no backing down now.
Of course it might just be the continuous tennis keeping Merv better mannered!  I suppose we will never know but whatever it is I'm happy for it.
Merv has new glasses, visited the dentist and awaiting another filling next week.  He has endured a trip to the podiatrist and on Tuesday it will be the hairdresser.  It only takes a few minutes there as he has little hair.  We bought him a new JVC TV with built in DVD player for his new room.  He has a new digital radio.
I'm running out of things to do before he goes.  There are as usual still clothes to buy and labels to sew but I think a few fun outings are now needed.
This move of course is not the end by any means.  After he moves into the care facility I will still take him out for the day.  I look forward to sharing fish and chips with him at Cicerello's on the foreshore.  Long walks (wheelchair) along the foreshore and other places of interest.  I won't have to worry about his washing, his shopping and cleaning up after him.  There will be more time to enjoy just being with him. No longer his carer but once again his wife.
Merv can no longer enjoy scones with jam and cream as he used to.  Instead I crumble the scone and layer it with strawberry jam then smother it with cream,  A de-constructed Devonshire tea!  Merv loves it.
It's time for the Australian Open men's final.  Merv has devoured his cheesecake and drank his Milo using his special 'Safe Straw'.  He's going for Roger Federer.  Whether he wins or not won't really matter, he just enjoys the tennis.  Winter Olympics begin Friday 9th February......

Broken Dreams

As the clock struck midnight on 31st December many of us made New Year's Resolutions some of which are already forgotten.  I'm still deciding what mine can be.
One thing I knew for sure this new year will be filled with gigantic changes.  Merv will go into permanent care.  I'll begin looking for a job as I'm too young to retire at 60.  Just lots of changes which I anticipated before that clock struck midnight.
Then there are people with plans of inspiration and joy awaiting them before their worlds are turned upside down in despair.
A family I know who lost their father in the last few years suddenly lost their son only a few days ago. He had a heart attack.  He was just a young man, not old at all.  Whatever their family expectations of the coming year; they are now dashed, splintered and unrepairable.  Such grief for a family still grieving.  It is unexplainable.  Though I don't know them well, I felt the rawness of their pain and grief.
"So unfair",  I shouted out loud to myself.
Huntington's Disease is unfair but we do have time to accept and to fight.  We can put plans into action, we can start the 'Bucket List' earlier is desired.  We prepare ourselves, we prepare others and we wait for symptoms, we wait and hope there is more waiting time available before the dreaded symptoms appear.  Recently there is news of a lumbar injection trial which is showing positive results in reducing HD symptoms.  The trial is still in it's infancy but everyone with a link to HD is excited and awaits further research results with much hope.
Merv's father wasn't so lucky.  He went into hospital at the age of 65 thinking he had suffered a stroke.  "Huntington's Disease," we all said.  "No, never heard of that!"  we chorused.  We choked when we learnt it is inherited from the affected parent.  Each child has 50% chance.  From Merv's father, Merv received the gene and thus it continues to the next generation.
A family, any family can be devastated by illness or loss.  It takes the strength of all to continue on to  offer hope and support to each other.

New Year's Eve celebrations

Permanent Care

I have known for weeks Merv will go into permanent care next year (2018) but I hadn't told him.  I kept putting it off. Is there ever a good time to tell your husband he needs to go into permanent care?
It seemed cruel to tell him before Christmas Day.  I felt like I had a ball and chain attached to my ankle,  but it's not about me.  On Boxing Day I took a deep breath or two or three and explained by going into care he will be safe.  So many times I have felt out of control when transferring him from wheelchair  to lift chair or toilet.  His balance is shot, my nerves are frayed! How long before he can no longer weight bear?  I want him to avoid having to go into hospital and the transition then into permanent care.  If we wait too long this becomes a real possibility.
In November I sent a permanent resident application to the respite organisation he stays with the most.  I had not expected a response so soon.  More than a week before Christmas I received a phone call from the organisation.  She asked me if they had a vacancy would I take it tomorrow or would I wait for after the New Year?  It was a trick question.  I replied to the latter.
I don't ever want him to go into permanent care.  He's only 63.  He should be working until 65 and planning his retirement.  The best laid plans are often never realised.  That was our plan.  Work until 65 years and travel around Australia.  The great Australian dream. Once we knew Huntington's Disease was to raise it's ugly head before his expected retirement age we chose to travel both in Australia and overseas.  I'm pleased we did.
This Wednesday we have a 'walk through' the facility which Merv will soon call home.  It fills me with dread.  Once in a care facility the only way out is in a box. It is the last stop in life's journey.  It shouldn't be this way for Merv but it is.
I pleaded my case with him.  I told him he will be safe in his new home.  I promised to take him out for fish and chips once a week.  I promised to bring him home to see the garden we made for him to enjoy.  I kept telling myself he will be safer and I know he will be.
It will be an end of an era.  I will no longer be caring for him, as one of my friends said who cared for her husband before he went into care.  I will be his wife again.  I look forward to that.

Christmas Memories

It's almost Christmas and what have we done?  John Lennon reverberates in my already jumbled head.  So little time, so much to do but it's not what you think!  Yes the shopping needs doing, the windows need cleaning and the garden is far from done.  None of this is really important, except of course the food shopping.
We took Merv to the local Christmas pageant and fed him hot chips while we waited in the crowd for the floats and groups of little children in colourful costumes.  We went to the amazing fireworks just across town.  We went on a boat and marvelled at the colourful Christmas lights which adorned the many houses on the local canals.
The jingling of bells was far from my head when I decorated the house and put up our table top fibre optic tree.  It looks nice in the lounge as it changes colours.
Then I stop and wonder if I'll be decorating what will be his room in the local care facility next year.  Too difficult to think about him not being here during the busy festive season, even though he would join us at home regularly and of course Christmas Day but it will never be the same.
I remember one of the counsellors telling us to imagine now what is ahead.  Imagine now what it will be like next Christmas without him living him.  I let my imagination go there, decide it's way too hard and return to the here and now.
What else can I do to give Merv wonderful Christmas memories?  On Saturday night we're looking forward to our local Christmas dinner with entertainment.  I'm not paying for Merv's ticket as I need to take his dinner with us, even his dessert, it's the being there which is important, not so much the food.  On Monday night there is a Carols singalong across the road.  I was told the couple have been doing this for years.  They decorate their garage with Christmas characters and lights, Carols are sung and Santa calls in for a surprise visit!
Dustin and Grace are coming for Christmas Day.  More wonderful memories for Merv to store away.
Huntington's Disease is a degenerative brain disease but Merv will remember.

Canal cruise to see the Christmas Lights

Merv enjoying the canal cruise

local fireworks

Santa at the pageant

A Prayer Posted

I remember attending the Huntington's Carer meetings many years ago listening to horrendous stories of their loved ones decline.  I was horrified knowing there would come a time when I would be sharing the very same story.  I had imagined that Merv may leave this world in a kinder way, if there is such a thing.  A heart attack (like his Uncle Jeff) or a stroke or something quick and not so painful.  Is that so wrong to think?
I saw Merv's father who also had Huntington's Disease suffer, it seemed so inhumane.  In his last months I shied away from visiting him in the nursing home, he was little more than a skeleton and he had no quality of life.  Merv would visit him regularly.  Now I wonder how it affected his outlook on the disease which he inherited from his dad.
A few months ago I made the decision to put Merv's name down for permanent care.  I battled long and hard but commonsense won through.  It won't be long before he is a two person transfer, already it is difficult transferring him myself.  He is much taller and heavier than me, if he falls he will injure himself and possibly me.  I tell him I'm no good to him if I'm injured.
What is this that I need to place my husband of forty years marriage into a care facility (nursing home)? Surely at sixty three he should still be working and planning a long and happy retirement? This wasn't on our list when we planned our lives so long ago.  Now it looms like a monster which we can no longer hide from.
I looked at all the positives, which there are many.  Care facilities are much better now than they were.  They provide the obvious physical care suitable for the individual but they also have suitable activities for residents, allied health (podiatry, Physio etc).  Hairdressing and massage are often available.  Care facilities are regularly accredited which is a comforting thought.  I have visited a few in our area and was pleased to see the admin and carers happy and confident in their workplace.
I had applied to Centrelink for a financial report which I finally received after ringing them.  Like many government departments I finally got through after forty minutes only to find their letter had been posted the day before.  I received it three days later.
Maybe I should have sat and filled in the  application form for the care facility that very day but as we do with anything difficult I procrastinated until I told myself to sit and fill it in!
It was late at night when I sealed the letter and left it by the kettle.  It was a difficult night's sleep, tossing and turning while so many questions ran around my head when I should be sleeping.
Every morning I fill the kettle, boil it and make myself a cuppa to start the day,  I had not forgotten it.  I dressed and finding other letters to post I sneaked out of the house while Merv and Mel slept.

I walked to the local post box.  The two other letters I slipped quietly into the post box keeping the application form to last.  I held the letter in my hand and prayed over it.  I prayed the letter would be delivered safely.  I prayed that the care facility will accept our application and Merv will be happy and well looked after in care.  Yes I prayed.  The tears will come later.

Respite Again

It was Mel's birthday.  She was 38.  It was a nice Spring day and everything went to plan.  Mel opened her presents, she's not fussy about the presents, as long as she gets some!
Merv's suitcase was packed and all the paraphanalia which he requires for two weeks respite.  An hours drive to Kings Park cafe to ensure firstly we are close to the respite centre and secondly to celebrate Mel's big day.  A friend of Mel's met us there for lunch to spend time with her.
As time does, all too soon we were at the care facility and unpacking Merv's suitcase.  It always takes both time and energy sorting out the last minute care needs and explanations of his special drinking  straws and soft diet.
Merv's not a difficult person to look after, he doesn't have bad behaviours or such like.  The saddest part is he can no longer do anything for himself, therefore I'm running here and there all the time including providing all the personal care and toileting. Not so many days go by when I'm not emotionally drained.  Sing a song, make a joke (drink some wine or maybe some coffee) keeps me going,  Mel being there also helps,
Two weeks is going to go fast.  That bit I know, it is never long enough.  Mel and I booked a six day coach tour from Perth to Monkey Mia including a day cruise to Dirk Hartog Island.
First we shop, then we pack and run around in circles until I finally get to bed only to be up again at 4am to arrive at the coach at 6:30am!
I hadn't trimmed or painted my toenails or numerous other grooming jobs. Once on holiday you have lots of time in your hotel room so I packed what I needed and enjoyed waiting for the nail polish to dry!
We both loved our trip away.  It's part of the West Australian coast we hadn't explored.  Monkey Mia is known for the wild dolphins which arrive at the beach every morning.  Many years ago everybody was allowed in the water to feed them but not today.  The dolphins arrive but only a few people are chosen by the rangers to enter the water to feed them.  There were seven dolphins when we arrived.  We were thrilled it was a wonderful experience.  We also enjoyed the day cruise on a catamaran  to Dirk Hartog Island off the coast.  Dirk, a Dutch explorer placed a pewter plate on the island in 1616, one of the first to explore the WA coast.  We went for a chilly but thrilling swim in the ocean off the island.  Something we will always remember.
Everyday I ring the care facility and enquire about Merv.  Is he drinking enough water?  Is he eating alright?  Is he happy and please tell him I rang.
I miss him but I'm glad I'm having a break.  A time to do all the things I can't otherwise do or complete.  The list is too long to share but it's been fun and carefree.

Dustin & Grace visit Merv in the care facility

Wheelie A Mess

A beautiful day with a slight breeze and no rain on the radar.  Mel asked to go to the foreshore after church.  'Why not', we all need a break from the house.
We chuckled when we realised it was a 'children's event',  Mel wasn't interested in making a paper flower or painting a wooden toy.  We enjoyed the sunshine and the crowds weaving in and out of flocks of people and stopping regularly to ensure the kiddies weren't bowled over.  They often just stop without warning and look around at whatever takes their interest!
Fortunately we found disability parking with little effort and returned to our car.
I wheeled Merv up to the car and put on the brakes but only one would work.  The other brake just wouldn't come to the party.  I helped Merv into the car and played around with the mischievous brake to no avail.
This is the same brake which has not worked on two previous occasions.  I had taken it into the local mobility centre to have it fixed but it refuses to stay fixed.  Merv's wheelchair is his legs and his balance, without it he is going nowhere.
I have a long list of expletives which I use during such times, much to the horror of daughter and husband I used them all on this occasion (In the car not in front of little ones) and more than once.
I took photos of the brake and wheel then I climbed my long ladder to prise nails from the top of my pergola (It will be painted on Tuesday, just getting it ready).
I made coffee and read yesterdays paper.  I noted an article on 60 year olds.  It stated more women over 60 are having heart attacks from too much life stress!  I flicked the page and wrote a long wailing email to Merv's Occupational Therapist and the nice bloke who serviced Merv's wheelchair only two months ago.  I included my wheel/brake photos.
It's Sunday and I didn't expect a reply until Monday, therefore I was surprised to receive an email back a few minutes later.  The man who serviced Merv's chair is coming down (an hour from Perth) to fix it Tuesday morning. Yes I will tell him to replace the brake and not just fix it.