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

Australia Day

Its not Australia Day yet but Merv has gone off to his day centre in full Aussie outfit.  The T shirt (of course), a silly hat and a flag.  Around Australia families and groups who don't meet on Tuesday 26th January have been celebrating.  The sausages sizzle on the barbie, damper is cooked and the beer (or wine) is flowing.  A bit of slip, slop, slap to prevent sunburn and a dab of insect repellant to ward off the 20,000 flies ready to attack!
Today the nice bloke from the day centre who brings their wheelchair to our front door (which now sports a very un-sporty ramp) said he is cooking the barbie today. He asked if Merv could dine on a snag.  No, was the answer, no snags.  Hmm he said and offered to cook Merv a bit of fish on the barbie.  Thumbs up.
Perth has the most wonderful skyworks on Australia Day.  It is amazing. It only lasts for thirty minutes but viewed from either Kings Park or the foreshore it is always spectacular.  Not so many years ago we would catch the train and make our way to a vantage point.  With a rug on the grass and a picnic tea we were set to enjoy the spectacle.  One year I even clinched well paid work for a private event on the foreshore.  I was an overnight waitress and bartender.  All the guests stopped as the firework display erupted and we also enjoyed it from our waterfront vantage point.
When the kids were just teenagers we parked our car right outside Kings Park early in the morning and spent the day in Fremantle before returning to Kings Park.  It was a great idea not having to walk too far to the car but the downside was we had a terrible time pulling out into a steady stream of bumper to bumper traffic.  Sometimes ideas sound better than they actually are!
Perth skyworks have become a Perth party with families and friends capturing early vantage spots and entertaining themselves until 3pm when air displays and other entertainment kicks in.
Merv asked me this morning if we were going.  I would like to but I don't suppose we will.  Now that Merv is in a wheelchair for all outdoor activities it is just a little harder and requires more planning and energy!
I have thought during the year of booking a hotel in Perth for the night, taking a boat or finding a not so good vantage spot closer to home.  The hotel is definitely out as well as the boat;  not that I looked!  The third option is better than none. The last two years we stayed home and watched the Australian Open!  Of course I can tape it if we want. 
Well time to check out possibilities to spend an evening enjoying what Perth does best.  Happy Australia Day....

Grump, Grump New Year

Well it happened.  2015 has gone and 2016 is here.  I'm told that's a good thing.  Lots of things ahead full of hope, joy, health (what?) etc etc.
Hmm,  a bit like Santa himself, all fur and speculation!   Yes I am getting cynical, but 2016 does promise some good things:

• Dustin and Grace celebrate their first wedding anniversary (hurray)
• They are celebrating paying off debts and saving for a house
• Grace will get her driver's license this year, she goes for her test this month
• Mel is losing weight at incredible speed, almost 13 kilos lost and only 11 kilos to go before goal weight of 65 kgs and a trip to Paris to celebrate!
• Added bonus of Mel's weight loss is improved health both physically and mentally
• Merv, Mel and I are planning a 3 day escape to Mandurah in early March
• Mel and I will have a 5 day holiday in Busselton during early April while Merv is in respite.  We will catch the train/coach and spend our time walking and being active
• I hope to resurrect my very sad garden this year, I have plans...
• Merv is watching his beloved Hopman Cup and this month there is also the Australian Open.
• Merv will continue with his physio program at home and he will be well looked after by me, family and community services.

Merv's physio sent us an email before Christmas.  It spoke about Merv's program and how he will see improvement.  I wondered what she knows about Huntington's Disease.  There is no cure, it is progressive and often in bursts.  The last six months have been very difficult for us both living with his declining health.  Sometimes you have to call a spade a spade and not dilly-dally around.  His mobility is never going to improve. 

I have a friend in our carer's group who said what all of us say: "When someone asks how Gerald is I tell them he is well."  I agree, no one wants to know that Merv's mobility is shot, that his response time is limited, sometimes I spoon feed him, we use his wheelchair much more than before, that I wipe his butt for him and we hardly go out because it's all just too hard.  I talk to him but at times it is like talking to a wall, there is no response. Yes, 'He's fine' hides a multiple of sins.

I am a prisoner of my doing but I know no other way.  I have almost 3 days a week of respite which I give almost exclusively to Mel.  She may have the HD gene but at this time she talks, she walks, she

thinks and does stuff,  that is all I need to feel like I am a part of the world for at least 3 days out of 7.

Okay, so I'm having a grump, but here I sit wandering what this year will dish us up and what will life be like as the clock ticks over to 2017?  Not a thought to entertain.