Voices

As you grow older it is easier to reminisce and seek out the most memorable times.  Some of them are full of joy and happiness while others berate you or cloud you with pain.
In my sixty one years there has been so many happy times, whether just waking up and knowing the day ahead will go ahead as planned.  The birth of my children, the coming together of family and friends and the joy of travel, celebrations and events.
The worst time of my life was in 1995 when my Father was dying of lung cancer, Merv was in hospital having an operation and Mel was in the children's hospital with psychosis.  Friends left meals at my door while I juggled work as well as visiting three different hospitals.  It was a living nightmare.  My father passed away six weeks later, Merv recovered completely but Mel has lived with mental illness ever since.
Merv has been in care for six months today.  I am forever grateful he is there, I knew I could not continue to look after him.  I was freaking out on the inside and holding it together most of the time but not always.  I often thought about people I had read about slamming their cars into a tree because they could no longer cope.  I couldn't do that, I wouldn't do that but it didn't stop me from thinking about it.  While I was driving it was never in my head but I knew I wasn't far from breaking point.  The phone call to say Merv had a room available for him was a God send.
Just when I thought the journey was easier and Merv's myoclonic jerks (uncontrolled movements) which suddenly appeared in mid April were adequately controlled with medication he went off the rails two weeks ago.  He has been experiencing   headaches and low oxygen saturation.  Five adults held Merv down to prevent him pushing himself from his bed to the floor.  The ambulance was called and they administered  an injection which calmed him down.  He went back to the facility six hours later. The myoclonic jerking continued while the GP played around with his meds to give Merv control off his body and relief from his trauma.
While I could previously just breeze in and out of his care facility as I choose to each day it is now a new beginning.  I wake each morning wondering whether it will be a good day free of the jerks or will Merv need further meds and calming down?  There appears to be no rhyme or reason to why and when the jerks begin.  It is no easy fix.  My nerves are frayed and my mind is traumatised.  Yesterday he refused to eat lunch but I succeeded in giving him a supplement pudding.  I can't remember Merv refusing food!  His personality is changing with the increased meds.  I am afraid of what is coming.  I know it is inevitable; it is part of the Huntington's journey.  I suppress the voices in my head which bring no cheer and I remember today when Merv smiled at me and told me he loves me.  He ate all his lunch and had no extra movement.  He was having a very good day.  That is so much better than a good memory.  It is fantastic!

Good memories of our holiday in Santorini 2008

Enjoying the Ride

It was just a casual remark by a staff member at the care facility.  She said Merv was so much better now than he was when he first arrived.  I wondered if my face betrayed my bewilderment wondering what she had meant.  His health has not improved and his weight has plummeted.
It was some time later I thought about what she had said and what she had intended.  By then it was quite clear she meant Merv had settled and become accustomed to being part of the family there.
I remember clearly when he was first admitted he was quiet and reserved when sitting at the dining room table or joining in activities in the club house.
In the last month he began grunting when being wheeled into the dining room.  He was grunting to say hello.  I suggested to him his grunting wasn't being received well by the other residents and suggested he say 'hello' instead.  Now he comes into the room like the Queen!  He's waving his hands and calling out - 'Hello, Hello.'  He's calling out to the staff when he has finished his meal and requires further attention.  The staff adore him.  I'm not so sure about the residents but he has his own fan group there as well.  The little old ladies are often seen and heard waving and replying to him as he enters or leaves.  They greet him fondly.  I roll my eyes and smile.  I'm happy he is happy.
Merv is 64 next Tuesday.  He was brought up in a family which celebrate birthdays in a big way.  It doesn't have to be a particular birthday, it's for each and every birthday.  We have continued the tradition.  It is more than sad that he lives in a care facility at such a young age but I am thankful he is well looked after and he is happy.

Holding Hands

I wonder if I'll ever run out of ideas to share.  I certainly run out of time to do so.  It's been another busy month.  We have been battered with winter storms  causing damage to many.  The rain has been unrelenting spattered with occasional days of sunshine and almost perfect winter weather.  On Wednesday a deluge of rain is expected along with thunder and hailstorms.
A few Saturdays ago I drove in the rain to Perth.  I had promised Mel gold class cinema seats to see Mamma Mia (here we go again).  This Wednesday I once more travel to Perth but by train.  I'm expecting the worse of the weather and picture myself with coat, umbrella with wet clothes clinging to my skin while listening to the thunderous roar of thunder overhead.
I had call from a dear friend last Wednesday.  She told me without hesitation her husband Geoff had passed away.  She knew it was coming; she could see it.  She knew.  I had been thinking of her all morning but I hadn't expected her news. Geoff and my friend helped look after Merv once a week from 2010 to 2013.  After Merv's support worker knocked off for the day there was an hour and a half before I came home from work.  They filled the gap.  I left afternoon tea for them and they chatted and played games with Merv.  I was forever grateful.
I had just given in my notice at work in 2013 when my friend said matter of factly they could no longer help Merv.  The timing was impeccable.  Geoff like Merv had a neurological disease, his being even rarer than Huntington's Disease.  He went downhill fast and was in a care facility for almost two years.  I was so sad to hear about his passing.
Merv is still well in the sense he is eating, drinking, sleeping and communicating.  He has a pureed diet only, drinks using a special safety straw and has padded rails on his bed to prevent him from falling out of bed.  His speech is slurred but he knows what is going on around him.  Today he told me he missed me.  I was late arriving by thirty minutes.  Firstly I was just late and then I stood and chatted to my neighbour.  I took time to chat while he was in outside when I went to get in my car.  We will often go for weeks without crossing paths.

After I arrived today Merv put out his hand in mine.  He knows Geoff is no longer with us.

Living in the Present

July has arrived with storms and wild wet weather.  The heater is on and last year's tattered umbrella replaced with a better one.  It's been four months since Merv went into a care facility.  It seems like a long time.  We've had all sorts of scenarios to deal with and sort out.  I asked him today if he is happy and he replied he is.  It is a relief to hear.

We all grieve.  Whether we lose our job, a long term relationship, loss of youth, loss of mobility, loss of things we don't consider worthy of grief.

I've known for eight years I have grieved for the loss of Merv;
The loss of sharing a relationship
The loss of running a house
The loss of contributing to the family income
The loss of holidaying to far off places together
The loss of intimacy
The loss of personal freedom to explore and enjoy the local community

The list goes on.  I look back and think of all the things we did do in the last eight years.  Many things we did together but many things we didn't whether we couldn't or just because it was just too darn hard.

After Merv went into care I was physically and emotionally tired.  I find myself like that now.  I wonder if the dreary grey days of winter has also caused this reaction in me.

I know to watch a movie which makes me chuckle or a chat with a friend lets the laughter flow.  It helps me not for the past or the future but for the here and now.

Weathering The Storm

The storms have embraced Perth twice in a week.  The cold fronts have caused heavy rains and destruction. Trees have been uprooted, roofs and fences damaged and heaters and fires lit to high light this dramatic change in our weather.
Along with the damage outside there have been significant changes for Merv.  Quite suddenly his body would lunge forward and his feet and legs balking and flapping like branches in a storm.
His sister who also has Huntington's has not had the same physical movements.
I emailed a video of him to his specialist and a week later we took the one hour drive up to Perth.
I asked if his specialist if he didn't give Merv meds to calm his body movements would he give me something instead!  At least I hadn't lost my sense of humour.
Meds often take awhile to kick in.  I wasn't surprised they took a few days and he changed from a kicking, lunging fanatic to a bent over always sleeping old man.
I shook my head; what is best?  No neither of these. There must be an in-between solution.
Today there has been a reduction in Merv's meds and I now wonder if this will result in the answer we are seeking.
I hope so, I hate seeing him at the mercy of these meds which zap the life out of him.
No matter the circumstances we hang on to hope, to change to a better solution.

The Demons Within

Where has most of May gone?  We're already counting down to June and sunny autumn weather in Perth has turned into wild storms beginning last night and continuing for the next few days.  Perfect weather to get the laptop out and begin sharing with you.
It isn't so long ago, just a few weeks back when I was planning some time out from Merv.  What was I thinking?
I'm not the most sensitive person.  In the last few days when he's needed me more I realise if I don't spend this time with him it will be lost and grieved about forever.  He knows who I am,  he does not have short term memory, he knows what is happening  around him.  He's counting on me to get his issues sorted for him.  He can't do it for himself and there is no-one else available.
Five weeks ago Merv's legs began to move uncontrollably and his body jerked forward while sitting.  He was even known to jump off the shower commode more than once.  Fortunately he didn't hurt himself but he shocked the caseworkers who showered him.
I was shocked with his movement but after a few days he settled down. Most of his excessive movement was early in the morning before his body settled later in the morning.
We spoke with Merv's specialist who increased his medication but to no avail.  It began, it stopped we couldn't figure it out.
Only a few days ago it began again.  This time I was armed with my iPhone on video mode.  I caught the movement and sent it to the specialist and other professionals involved in Merv's care.
Whether Merv found it too difficult to feed himself or saying 'no' was a word of choice, staff said he 'refused' lunch on Tuesday and breakfast on Thursday.  Fortunately both times I was visiting soon after and I successfully fed Merv.
I understand if a resident refuses food they can't be forced to eat but I think this whole situation is far more complex.  We're just guessing or are we presuming that Merv has difficulty with his extreme movement and eating at the same time?  Who knows......
My senses are alerted, I'm fighting the battle, I'm on the winning side.  I have my warriors standing by.

What Time?

A lot of my friends said, "What will you do with all the extra time you have now Merv is in care?"  It's a lot like the person who retires because they have no time for themselves outside their work, but they just get busier in retirement doing everything else!
I thought I may have extra time and in many ways I do.  I now walk with my sister before the sunrises a few mornings a week to help in our fitness journey.  I attend the local gardening club and a ladies do it yourself meeting once a month.
Yes I do things which before I didn't have the time or I was just unavailable at the time these things happened.  I no longer have to rush home because it's almost time for the support worker to go home.  Yes that is freedom.
On the other hand I visit Merv everyday because he is unable to do even the basic things for himself. Things as simple as turning on his TV and selecting a suitable channel.  Last week we had Foxtel Sport connected in his room.  Whether it's me or a staff member someone has to turn it on.
Some days I arrive and he's staring at a blank screen or he's wearing a short sleeve T shirt when he needs something warmer.  He's sometimes unshaved.  This morning his teeth hadn't been brushed.  I did it.
I wonder if life will ever be easier.  I fear not.
Just as we were getting on top of these many smaller issues, or at least accepting the complacency Merv experienced extreme body movements for several days last week.  Merv told everyone it's his disease (Huntington's), his specialist said otherwise.  I threw up my hands in despair. Merv was so restless he was put into his bed after breakfast for his own safety.  With a slight increase in medication he appears to be much better.  Will it happen again?  If so, when and for how long?  In reality we're just taking one day at a time and adding a dash of hope.