Opening the Door

I had accepted Merv wasn't going to leave his room in a hurry.  He had lived in his small room with adjacent bathroom since November 12th.  Huntington's Disease messes with your mind as it destroys the brain.
Merv was previously an outgoing person, not one to stay at home and watch TV all day.  Now he spends most of the day listening to Foxtel 70's hits.  I know most of the songs as they are constantly repeated.  I know songs from the 70's I had never heard of before.  There is definitely a collection of one hit wonders among the song lists.
Merv's care facility did what everybody else is doing at this time of the year.  They're celebrating Christmas with concerts, dinners, celebrations and the expected decorations including trees with flashing lights!
I had snapped some photos of our local shopping centre's decorations.  Amazing photos which I was happy to share with him.  Last Friday I told him the care facility had some amazing decorations to see.  I suggested we take him to see them.   I could see him turning the scenario over in his mind.  A few hours later I asked the same question and again after lunch when his support worker arrived.
Hooray!  He said he was go!
The spell was broken after three weeks and four days Merv was in his wheelchair once again leaving his room and into the corridor.  He loved the decorations, he thought time to look and to feel.  Like a young child exploring a new world.  After the enjoyment of colours and lights his support worker took him to the concert in the clubhouse.  No jerky movements or frustration from him at all, he enjoyed every moment.
I was thrilled; yes I was thrilled.  There is hope we can do it all again on Christmas Day.

Sister Love

Merv hasn't seen his sister Vicki for over twelve months.  I don't know if he thinks of her but I do know he wanted to see her.  Just a few weeks back I received a call from the manager of the care facility where she lives.  Her enthusiasm was exciting.  She said Vicki was going on a weekend getaway with two carers and her plans included visiting Merv in his care facility.
Merv hasn't been out of room for weeks, he is so comfortable there and too uncomfortable to go elsewhere.  Myself and his carer hoaxed him into his wheelchair a few days before Vicki's visit.  We took him to the cafe area, enjoyed a short walk outside and a round or two of cards.
There was hope Merv would enjoy lunch with his sister in the cafe area a few days later.  The day arrived but nothing would budge him.  "No, No, No." was his answer.
Mel accompanied me to the care facility that morning, she was looking forward to see her Aunty.
Where there is Plan A there is always room for Plan B.  We threw Plan A out the window and brought Vicki and her carers to see Merv in his room.  She shrieked with joy as he appeared in her vision.  He grinned back.  It was lovely to see.  Lunch was soon served and once again they were apart.  With lunch in the cafe area finished and everyone fed our chatting brought bonding between us all.
Plan B back in action with us pushing Vicki back to Merv's room.  Vicki's carers are just young girls but they did something I had not thought of.  They put Vicki's chair next to Merv's and encouraged them to hold hands which they did and then they left the room for a few minutes to give them their own space.  They didn't talk to one another.  Communication is difficult for both of them; they simply sat in the quiet holding hands.  It was a precious time.
Vicki's carers were so touched they promised to bring her back the next day which they did.  Merv and his sister ate lunch together in his room and they held hands once again.  I don't know how long it will before they see each other again.  I'm glad it was such a lovely time for them both.

Not on the Cards

It's been a tough month.  The second time in as many months I have flown the coup enjoying a few days away.  Merv has not been neglected.  His community support workers have kept him company and comfortable.
As Merv's health continues to decline he continues to lose weight with his personal needs forever increasing. At times I am running to keep up with his needs.
The community support workers read my daily notes and add their comments in the communication book.  I noted recently there was no comment on Merv's delight in beating everyone who dares to play him at UNO.  How he loves the game of UNO.  He has played for too many years to remember.  His sly smile when the workers state his delight in meddling bordering on cheating.  Cheating?  Merv?  Absolutely!
I asked the workers and they gave me different answers.  One of them said he was too tired, the other said they hadn't had time.
I asked Merv instead.  He said it was difficult to hold the card holder.  I suggested I velcro the card holder to the tray table in front of him allowing him to be hands free.  He just said, "no, he didn't want to play anymore."
I sat and cried.  What will he give up next?  There's not a lot left to give up.

A Banana Case

Like ants in their nest or bees in a swarm there are times when life gets out of kilter and nothing seems quite right.
One minute Merv in his care facility is going along as expected.  Staff are coming and going and Merv is doing as well as expected considering his HD.  Life is not what we had hoped but it is what it is.
Merv had his fall over three weeks ago, his foot still hurts, the gash on his head has healed and left a small scar.  I was feed up and emailed the deputy manager asking him to address some crucial questions concerning Merv's care.
Nothing much happened until a week later when a hive of activity began.  Staff wanted to know absolutely everything Merv was eating and drinking.   Records were being kept.  Merv has lost over 8 kilos since March.  Suddenly they appeared to be concerned.  This is not completely true, staff have been concerned adding a sustenance powder to his mealtime potato.  There has also been the occasional pudding supplement.
The Allied Health Team was contacted.  I thought of closing Merv's door (pity there is no lock) just to keep the hordes out.
Today's incident keeps replaying in my mind.  An unexpected incident; after filling up my coffee mug I returned to Merv's room to find the nurse chatting quietly to him.  She sat next to him saying he had lost a lot of weight and would he consider eating a banana later on for supper.  He had yet to have his lunch.  He mumbled he would.
The nurse came back with a large yellow banana and placed it on his tray in front of him.  She must have seen the expression on my face and asked if he could peel it and eat it like it was.
I didn't even bother to tell her Merv has dysphasia, surely she would know?  I suggested the banana should be mashed and mixed with either custard or yoghurt.  "Oh," she said as she retrieved the banana exiting the room.  We didn't see the banana again (or the nurse).
I have a meeting with the deputy manager on Thursday along with the Allied Health Team.  It promises to be interesting.

Within A Month

It's been a busy month.  Merv fell out of his chair almost three weeks ago gashing the right side of his head and rolling on his right foot.  He has an expected broken bone or two in his foot.  I spent most of the morning crying.  I had arrived late only to find the nurse stating she had contacted me.  I challenged her on this.  My new iPhone records all ingoing and outgoing calls; there was no evidence of her call. It was three hours after his fall he told me his foot hurt.  I removed his shoe and sock to find his foot swollen like a melon.  The staff had checked him for further injury  More tears.  It was a frightful day.  His head wound has almost healed completely but his foot is still a bug-bear for him.  He is having panadol daily.
Merv fell out of his chair due to his excessive movement increasing almost daily.  A month later he is on all sorts of drugs.  He defies the odds by continuing to surprise us with bouts of excessive movements.
Just by talking to those in the know I learnt in the last month people with HD become easily overwhelmed outside their comfort zone.
Merv who not so long ago enjoyed nothing better than a big crowd of people, lots of noise and taking his time has turned the tables by reversing all of the above.
I'm getting to know and understand a little better this other personality of Merv's.  I'm trying and it is very trying.    

       

HD Hindsight

It seemed profound at the time but in hindsight it's just commonsense.  On Tuesday I like to go to the gym before seeing Merv at 10am but the deputy manager invited a Huntington's advisor to Merv's care facility.
I was asked to join the meeting along with the clinical nurse.  There was the regular questions of medication and symptoms.  Then we discussed HD behaviours.  I should have known, I should have figured it out myself.  Someone should have let me know.
During our round table discussion I explained some of Merv's new behaviours.  Like his behaviour at the dining table at lunchtime.  He is happy to eat his lunch getting at least a couple of mouthfuls on his adult bib.  When he has finished his main meal and dessert he shouts out, 'FINISHED.'  I thought it was just bad behaviour but I was wrong.  It was explained that Merv will often feel he is out of his comfort zone and becomes disorientated.  Where had my Merv of all these years gone?  Who is this man who holds my hand, lets me feed him and is overwhelmed by too much noise and movement.
In hindsight I really should have known.

Cruising together in 2008

2 Crashes Post Father's Day

Two crashes in the family post Father's Day.  At least Father's Day was a memorable occasion. Today we had one car crash plus one wheelchair, but firstly more about Father's Day.
Every September the first Sunday is Father's Day in Australia.  Last year we went to a local tavern and celebrated.  I think back and know there are no more restaurant lunches to share with Merv.
This year we celebrated with lunch at the Care facility.  Dustin and Grace arrived at midday and I was on my way.
A strange beginning for our celebration day.  Merv was just brilliant, not a twitter or a jerk to be seen.  He really is a Jekyll and Hyde at times.  Good today and goodness knows what tomorrow will bring.
After present giving earlier in the day Mel stayed behind to watch Crocodile Dundee with her Dad while I was at home putting the finishing touches to lunch.  Merv was going to have his regular pureed lunch but followed with yummy home made cheesecake.
I was putting together pulled pork rolls for lunch.  It seemed simple.  I bought the pulled pork but didn't read the instructions until I was almost packed and out the door.  Oh goodness, I had to either put it in the oven, on the stovetop or microwave.  Definitely not the microwave and my oven is super slow.  I grabbed the frypan, heated up the oil and threw in the pork (after reading the instructions twice), it was already cooked just needed heating to allow the pork to be 'pulled.'  All done.  I had made the balsamic sauce the previous night, the coleslaw that morning and sliced the radish. I then added home grown lettuce as I remembered Dustin is not keen on coleslaw.  I packed the home made potato chips for the dips, cut up fresh fruit and a big pack of chocolate balls.  There were upteen plates, dishes and utensils to be packed.  Oh don't forget the cheesecake please.  Yes all the food was  packed in the wheeled esky and a bottle of leftover but unopened Ikea apple juice plus two thermos, cups and coffee sachets.
One oversized esky on wheels and three bags later I'm ready to leave but I almost leave the esky in the kitchen.  I grab it as well as the bag with the Bingo game.
Fortunately Dustin and Grace have already arrived and help me out with the in-house picnic bags.  The cafe area at the care facility is filled with an extended family taking up all the tables except one.  We place our stuff on it and wrangle a couple of chairs.  Dustin and Mel go and get their father and bring him down in his wheelchair.  The extended family is now smaller in number and we are offered more chairs.
It's no restaurant but I put out all the ingredients for the pulled pork buns and we all help ourselves, pour coffee and eat chocolates while I feed Merv his lunch.  It is just lovely.  Later I cut up the cheesecake which has survived two weeks in the freezer.  It's still yummy.  Merv delights in two portions. The Ikea juice is consumed and the Bingo bag is found.
Mel takes on the job of spinning the wheel and calling out the numbers.  Merv and I share two cards and Merv wins the first game.  Dustin is the spinner next and Grace wins.  We pack up and head back to Merv's room.
It has been a fabulous afternoon.
That was yesterday and just after 9am I received a call from the care facility's nurse.  Merv had woken well only to become agitated and thrashing in his wheelchair after breakfast.  The carer had left him for a minute and returned after hearing a loud thud.  His wheelchair which weighs almost 50kg was on its back with Merv still strapped in it.  The staff used a hoist to lift him out.  I was heartbroken and I thankful I wasn't there to see it.  Extra meds were given to him and by the time I had rushed down he was relaxed sprawled out in his recliner chair.
Dustin rang me after 6pm and said he had a minor car accident in a roundabout.  Neither he nor the other driver were hurt but both cars need repairs.  Fortunately it wasn't his fault.
We have made it to the end of the day.  At least everyone is accounted for and well.  Another day awaits us.

Merv recovered after his fall today

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.

Escape to the Shopping Centre

Our local shopping centre was once the hub of excitement but just like our houses they become dated and dreary.  Before we moved into our new home the local shopping centre was immersed in their refurbishment.  There were only seven shops open and no parking.  I shopped elsewhere.
Last July they promoted the opening of  eighty new shops.  I made sure I was there!
When all else is going pear shaped in life a shopping spree or even a browse is pure escapism.  I indulged regularly and I have no regrets.
Merv going into permanent care has opened up a window of free time each morning.  Last Thursday I took the opportunity to attend the grand opening of our new shopping centre.  Even the TV Morning Show were there.  Before 8am the place was crowded.  I took my place in the queue outside department store David Jones and gratefully accepted a hot cross bun offered to those in the line up. Breakfast... yes I had forgotten my morning routine.  I was too late for the free shop bag but I didn't care.  After the official ribbon cutting I wandered around David Jones and made a purchase.  I'll be back for more I thought.  I took time enjoying the H&M stores, the quirky and expensive boutiques.  I bought takeaway coffee from a brand new cafe. They not only had inexperienced staff and new equipment which added to the waiting time.  There were bands playing and dancers entertaining but it was time to leave to visit Merv.  The carpark was full when I headed out.

Later the same day I revisited David Jones enjoying the rambling array of books, the kitchen appliances, and running the tips of my fingers over leather shoes.  I was hooked.  I accepted a glass of champagne and an egg sandwich.  Oh more celebrations in David Jones.

I had a shopping list which included the tried and true range of shops opened months before.  This Sunday I'm taking Mel shopping with me.  There is a fabulous multi coloured coverlet in one Manchester store, a quirky boutique for girls size 12-24 which will leave her wide eyed.  Oh and there is a fabulous book on Sunday readings which I might just stick under my arm and walk over to the sales desk.

Yes escape to the Shopping Centre where I indulge in a little fantasy and forget the reality of life! 

Crowd waiting for the ribbon cutting


My first purchase at David Jones, also first customer


A view of one of the new wings

Free Champagne at David Jones after 5pm

Three Weeks

Just a little more than three weeks since Merv went into the care facility.  Overall I must say I'm happy.  Oh so very relieved to give away the ongoing personal care and toileting issues.  Neither of which I miss!
I miss him being here.  I loved it when he sat comfortably in his reclining lift chair.  Care free watching sport or a favourite movie.  I would sit with him for just a while in between cooking, gardening, cleaning or answering phone calls and emails.
I rarely seem to be at home anymore.  I'm sorting stuff out at the facility!  Today I arrived to find him in the clubhouse after his Physio session wearing his cute little pyjamas!  I was horrified and wheeled him with haste back to his room and promptly changed him into 'blokes clothes.'  So much more like him.  Bedtime should never be showtime, at least not for an 63 year old bald headed bloke!

The manager decided to photograph his pj's to prevent the caseworkers mistaking his night clothes for day ones.  Problem solved.  While that was being solved and Mel was delighting herself playing bingo with Merv in the clubhouse I ran around buying TV number four.  I know no-one who has four TVs in 23 days.  It cost a heap more but if the damn huge button remote doesn't work I know I can buy a Sony big button remote which will work.  Now I have to squeeze it out of the box, attach those damn legs without drinking a glass of wine first then tune the damn thing.  I'll hopefully attempt it before 'wine time.'

Today his new recliner/lift chair is due to be delivered to the care facility.  My phone sits next to me to ensure I don't miss the call.  I hate waiting for the call.  They never call when you want them to.
Next week I have arranged with his community service coordinator to have afternoon visits four times a week.  The girls will play UNO, games, take him for a walk or listen to music.  I imagine I could just lie on my bed with the autumn breeze gently cooling me.  You know of course that is unlikely to happen.  Possibly never.  More likely I'll be having fun at the refurbished shopping centre or gardening, cleaning or cooking.  Oh well.  Mel and I have plans to take a day off and take the train to Perth on just get out on the open road.  It might just take a while yet.

TV 1 -JVC the DVD player didn't work

TV 2 - LG too small

Kmart Big Button Remote

TV 3- Linden cheap won't sync with large remote

TV 4 - here's hoping

A Moment in Time

There are numerous times in my life I remember well.  I know where I was when I heard Elvis had died.  I was holding my baby son of only 4 months.  I couldn't believe it was true.  It was long before social media and we relied on radio announcements and breaking news breaks on TV.   I was driving my Mum home when I heard Princess Di had died from a traffic accident.  I was driving in the northern suburbs when I heard Steve Irwin had died  The same goes for  the deaths of both our parents and my brother's little girl who died at eleven.  I remember each moment in time.   Each was a momentous moment.  Fortunately not all moments in time are death related.
I have dates, places and memories of family celebrations and milestones.  Then there is Thursday 1st March 2018.
Merv was in respite in Bunbury when I received the call from the care facility.  I had filled in the paperwork, taken Merv with me during a walk through in January and now after a six week wait a permanent room was being offered to us.
I had imagined the phone call in my head, playing it out with different scenarios.  I had already bullied myself into politely saying, "Yes."
I listened to the spiel of my caller offering the room and then I said, "YES"
Merv came home last Wednesday afternoon from his nine day respite and spent one night at home before driving him to his new home in the care facility on Thursday 1st March.
Did he fully understand when I explained slowly and carefully what was about to happen?  I hope so but I can't be sure.  So far he has accepted his new home is not the one he moved into twelve months ago; the one I live in, the one he no longer does.
My friends said I should be tearful and I wonder if I am bad because I didn't.  I felt relieve that others will share his care and the responsibility which comes with his declining health.
Yes I was relieved.  It doesn't mean I love him less.

Good News Mel

When times are tough it's good to hear and celebrate good news.  While Merv's health continues to deteriorate, my face grows longer and my heart beats faster. I know it's just a matter of time before a room becomes available in the care facility for him.
Today I took Mel (38) to Perth to Neurosciences to continue in the ENROLL research study.  After endless questions Mel stayed in the room to answer more questions and I was asked to sit in reception and fill in the carer's questionnaire.  I do the same each year.  I wondered if my answers were the same as last year and the year before that.  I feel my toes carefully balanced on a precipice.  Don't lean forward I hear myself shout.
We discussed Mel's mood swings and all the things which have happened in the eleven months since moving house.  I don't feel so bad now.
Finally we are in the room with the head neurologist.  He brings comfort after examining her through a series of questions and movements,  He assures us she is not showing any Huntington's symptoms.
Relieve wraps its comforting arms around me in a persuasive hug.  I am comforted.  Mel is joyful.
It is known to many that Mel moves and shakes, not all the time but when she does she does it with gusto.  Her doctor years ago called me with her concern and asked for me to take her to Neurosciences.  Anxiety, a nervous disposition?  Who knows, who cares?  All I know is she is not currently HD symptomatic.
We rejoice.  Family and friends rejoice with us! We will be back to do the tests next year.  I don't think of next year only this one....

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