Time Afterwards

The hard work has been done but even through the tirade of renovation adventure I had time to stop and make friends.
My first time at the local WA Carer's meeting I stood waiting to pay my $15 for fish and chips.  I had visited the restaurant before and knew it wasn't the best. I expected dry lifeless fish which is exactly what was served!  People sitting at the carer table took no notice of me, no one welcomed me as I stood alone.  Finally the lady taking the money turned to me and took my money.  She asked me no questions.  It was a rather horrendous moment.  Should I just leave?  They seemed such a unfriendly lot.
The lady opposite me seemed disinterested but we began to talk and I asked her questions. By the time it was time to leave we had shared information about each other and I was hoping she would be there the following month.  It turned out she had told me about a local information internet page where newcomers often introduce themselves. A bit like a local Facebook page.  I thought; what the heck and did just that.  I received a reply from the lady I had met that afternoon who asked if I was the same person she had met that afternoon.  The rest was easy.  We have met up several times since our initial meeting, usually with our husbands in tow and sometimes just us. 
I have also met some local women at the clubhouse one evening for the newcomers.  It was a great night with a movie, wine and nibbles.  Merv, Mel and I have already attended two monthly dinners at the clubhouse. Fabulous dinners, desserts and entertainment for $12 each!  I take Merv's dinner with us and reheat it for him but we always manage for him to have the dessert by adding lots of cream and/or custard to help it go down!
Talking about friendships, weirder things have happened.  A bloke Merv went to primary school with and stayed in touch with through adolescent, adulthood, marriages and divorces until twenty years ago when we lost contact with him suddenly made contact with us again.  It was a great surprise for Merv when he visited us at home.  I had not told Merv in case the friend decided for whatever reason he was unable to come.  His home at the time was an over four hours drive away from us.  He brought his dog and stayed overnight.  I was delighted to catch up with his news.  We finally all went to bed at 2am the next morning!
Only the day before a friend who hasn't been back to Perth for over thirty years flew over with her new hubby and stayed with other friends.  They stopped by for lunch and we spent time catching up.   We had visited her twice in Victoria since she had left Perth.  I could tell she was shaken about Merv's declining health.  She would remember Merv as a jovial, talkative person.  All she saw now was a man who rarely talks and doesn't (is unable) to join in the conversation without prompting.  I know it was difficult for her.  It's funny but I felt for her.
My amazing sister, her husband and family, my new friends and friends to come, my girl at home and Merv, all making my life whole.  All the work and material things in the world don't make the world go round.  It the love and friendship of others which does.

The sun setting over the bay, a time to relax and reflect

Merv's mate Wayne who surprised him with a visit

Dreaming

Merv has settled in well.  Yesterday he was excited about the Eagles, his favourite footy team.  They were playing at 6pm.  He even spoke a few words, I held my breath and tried to decipher what he was saying.  Names of football players were easier, the rest we tried again or in despair my solution is to nod, smile and agree.  He waved his oversized flag each time his team kicked another goal.  He was happy.
Merv now has Support Workers spending time with him while I go out, either with Mel or by myself.  Usually it's with Mel.  In saying that Mel has connected with a local group for people with mental health issues.  On Friday she had her official appointment.  She discussed her goals and they're already helping her to achieve them.  How amazing is that.  Mel has also joined Weight Watchers and a local art group.
Merv was already to join an all male day centre.  They had told the admin if they wanted to stay indoors they would stay home instead.  These guys wanted to rock n roll!  Well, what they meant is they wanted an outing every week of their choice.  Which is what they got.  I was told Merv had the funding for the day centre and a Support Worker (hopefully male) as he needs full assistance with most things.  He can eat by himself and still has a healthy appetite.  'Cheesecake' being his favourite food and word!  Merv's mobility has gone from bad to worst.  His walking is like a stutter, it is not a lean from side to side like it was before.  I know his brain is not sending the correct messages to his body.  It upsets me.  I don't know how long he has before he will need to go into permanent care.  I can't think about it, but I know I should.
I was all excited about the day centre happening.  Then the email arrived saying there was a 'snag'  but hopefully it can be fixed.  Oh, I was like a deflated balloon!  Like most funding issues I'm not holding my breath....
I am still amazed that in January this year I had no idea I would be living so close to the estuary and the ocean in this wonderful house (which needs ongoing renovation!) 
Yesterday we enjoyed another warm, sunny autumn day.  We walked along the estuary path for sometime, stopping to enjoy the view of the water, ducks and birds.  It was a glorious time.  I often stop Merv's wheelchair so we can enjoy the moment together of just stopping, looking and immersing ourselves in the moment.

Another goal for the Eagles!

Merv on the Move

Merv is happy in his new home.  I know, because he told me.  It was always a concern about moving.  He had little say in the matter.  We moved because the house no longer met our needs.  It was really my decision.  I decided, yes almost everything.  Merv went along for the ride.  I remind myself he tells me he likes the new house and living close to the ocean and the estuary.  I can only feel relief.
He didn't complain when he was bundled off to respite for two weeks while we finished packing, emptied the house plus our huge brick shed.  We experienced the rigours of moving house before setting up home away from people and groups he knew well.  Again I was relieved.
In our previous house our home was on a hilly gradient.  There was never talk of taking Merv for a walk using his wheelchair unless we drove somewhere first.  Here the land and neighbourhood is flat.  Perfect for a jaunt around the block for a walk or a bumpy ride on the rickety boardwalk to the estuary.  A fresh breeze from the ocean and a lightness of life abounds. 
While Merv pondered in respite the nominated bathroom renovator and his merry men spent four days gutting and refitting Merv's ensuite bathroom as a 'wet room'.  It is just perfect.
Fortunately Merv was in care while tradesmen hammered, drilled and generally made all types of noises while refitting all types of 'must haves'. 
Tomorrow the sky light will be fitted.  Thank goodness we can finally leave the light off in the living area.  Next week the blinds will be fitted and security to doors and windows.  The wilting garden looks at me in expectation.  I add a few flowers for colours but it's screaming for a makeover.
Merv doesn't care about the garden, he makes no mention of it.
Merv has been home with us only two weeks.  I have taken him out for fish and chips by the water and shown him more shops than he would choose to remember.  Now I'm tired of the retailers.  I yearn for the sea breeze, the view of the waves lapping at the shore, children (ooh it's school holidays here) playing on the sand.  Yes it's time to down tools and refresh the soul.
Tomorrow I will take Merv and Mel down to the ocean and walk along the flat and winding path which runs close by.  We will breath in the fresh cool air from the ocean and be glad we moved here.

Fish and Chips by the water

16 minute walk  from home, wonderful view!

Expectations

I've heard all the stories.  The good, the bad and the ugly.  Huntington's Disease is known to have an element of dementia.  We have all heard the stories where a person with dementia moves house and goes into a downward spiral.
I'm hoping this is not the case for us.  Next month we leave our home of 31 years and head south for just over an hour to our new house between the estuary and the ocean.  It has all happened in a month and I can only say it was God who was is control. 
Neither my younger sister or I envisaged our house was go under offer on the very first 'home open'.  The agent only invited people on his data base and we received an offer $10,000 more than we had hoped for.  But don't stop there, there is more.  The agent went back and wrangled $5,000 more from the buyer.  I was speechless!
We had not advertised our house on the agent's website or even had a For Sale board at the front of our property.  The agent said it cost $130 for the board.  I retorted if he wanted the board erected on our property for advertising reasons he could pay for it himself.  He did.
Everything has gone through without a hiccup.  Only now there are some minor hiccups but plenty of time to sort them out.
I've even booked the removal van, the carpet cleaner and so many other things.  Now it's time to pack.
Merv will be in respite during the move.  I'll pick him up ten days later.  I hope he'll be as thrilled as we are about the move.

Mel and the Sold Sign for our new house

Emergency

On Thursday I dropped by the baby shop and bought a Baby Monitor.  I had no baby in mind.  I bought it for Merv to use.  He has decided he wants to get up during the night to go to the toilet instead of using his urinal bottle.  Very much a hit and miss affair!
I had ran out of time to read the manual and get the damn thing operating, therefore on Friday night Merv fell with a thud on the bathroom floor.
I had no choice but to ring 000.  It was 4:30am and I had tried unsuccessfully but failed at all attempts to get him off the floor.  I had woken to find Merv sprawled on the bathroom floor.  The floor had been wet and he slipped on his way to his toilet.
I tried sitting him up and asking him to pull himself up using a dining chair with arms to support him.  I then suggested he crawl to the bedroom and use the bed to pull himself up but he was like a trapped spider.  Arms and legs flailing aimlessly with anxiety.
I put some towels under his head, located my mobile phone and rang Emergency. I explained the situation and answered all their questions.  I unlocked the front door, turned on the outside light and waited.
I dressed in case Merv had broken or damaged a limb. It wasn't long before the young man and  woman paramedics arrived.  They were a blessing, managing the situation professionally but with compassion.  They took Merv's blood pressure, made medical observations and assessed him for damaged limbs and body parts.
After ten minutes they had him in sitting position and using a towel under his arms as leverage they pulled him up and sat him on the chair.
Merv refused to go to the hospital and I signed to say that was his decision. 
After he had used the toilet and was tucked up in bed once more, he lay motionless for the rest of the night while I dozed for a few hours.
Needless to say the Baby Monitor is up and running tonight.  Merv has been given instruction how to ring his bell to get my attention and wake me from my slumber.

Goodbye January

The new year has come and gone without a blog from me.  I have certainly thought about it but my fingers haven't hit the keyboard for awhile.
Christmas was a lovely celebration.  Though it was the first without Mum.  My younger sister invited us to her house and we delighted in celebrating with her and her family.  It was a lovely day.
Merv's Huntington's has progressed. Though his injury from his fall in October has healed he is still unable to walk without assistance and only in the house. Outside he uses his wheelchair.  His speech is difficult to decipher at times and his response is very slow.  I have to remember it is his disease which slows him and he's not just being a grouchy old man! Yes it's hard to live through it, knowing what we had and being aware of what is to come.
That brings us to the house.  I had decided over twelve months ago to do up the house and sell it while keeping in mind when Merv goes into residential care full time I am unable to sell the house without giving fifty percent to the care home.  If I stay in the family home I don't need to do that.  Oh the laws of the land and behaving shrewdly!
At the end of January this year we received a very good offer on our home of thirty one years.  I had  help from family, friends and tradies renovating and bringing our much loved home to what I could foresee as a healthy selling standard.
Today we viewed and put forth an offer on a house an hour away from our current house.  It is more than adequate and suits our budget while giving us a 'sea change.'
It has enough room for Merv, myself plus daughter Mel who is coming to live with us.  It was super cheap as real estate prices have plummeted in the area.  It is definitely livable but needs work to make it into a home.  Oh, yes another long term project.
I don't sleep well at night.  My nights are filled with what is happening.  Selling and buying houses but mostly of Merv's wellbeing.  When I wake at night I check on him and ask him if he wants to go to the toilet.  Many times he does.  I will sleep afterwards depending on the time.  I dread the thought of placing him in care permanently.  It fills me with dread, but it is something I need to do not just for me but for him also.  There will come a time when I will not be able to give him the care he deserves and requires.
At this time we will move to our new house and see how we go.

Christmas Cheer

It's almost Christmas and what have we done (oh I hear the breath of John Lennon in the breeze).  There has been no Christmas Carolling at the local parks, no presents for the underprivileged under the Kmart tree.  There has been very little of anything.  We do have our minuscule Christmas tree with its fibre optic lights which change colour hypnotically.
A change like the seasons was definitely needed.  I promised Merv and Mel a trip by taxi to the city of Perth to see the Christmas lights.  The sunlight fades fast about 7:30pm, therefore a late afternoon trip to Perth was discussed. After a busy day Christmas shopping and enjoying apple pie and cream at the Dome café we all enjoyed a rest in the afternoon for an hour on our beds.  I woke Merv up and slid in beside him.  Something I rarely do these days.  He put his arm around me for a hug.  That was nice.
I rang the taxi company and we waited for our station wagon to arrive.  Instead a huge Maxi taxi pulled up.  Merv was in his wheelchair and they aligned him on their rear hoist and strapped him in.  A view a little like a limo without the wine and nibbles!  Mel and I used the seats beside and opposite
and off we went to the Perth taxi rank in William Street. Merv has 50% off taxi vouchers.  The driver and his assistant suggested we ask Merv's GP for maxi taxi rebate which is 75%.  I didn't know that.  If a person is unable to walk and need a maxi taxi they only pay 25% of the fare. 
We arrived in Perth at 6:20 and immediately hunted out the Christmas decorations and visited our favourite Perth haunts; London Court Arcade,  David Jones and later Myer.
I positioned Merv next to a school boy busker with a trumpet, dropping him a donation in his money pool and taking a photo.  Merv didn't seem impressed!  I thought it was fun.
At 7pm the hunger pangs struck and we sought food.  The only place I recognised was the Coffee Club in Murray street with alfresco dining.  Perfect.  We found a table and ordered hot chips for Merv while Mel and I shared a calamari Asian coleslaw dish.  We were in starvation mode before it finally arrived and we gobbled it up.  Off to Forrest Chase to view the magnificent Christmas Tree ablaze of colour and light.  The City of Perth's nativity play was eye catching and mesmerising. We stood (Merv sat in his chair) and watched as each part of the nativity story was played out.  We took a break to Myer (yes I needed a toilet break) to see their Christmas display.  A little disappointing but at least we went.  Before the nativity finished we were back watching.  The choir were in full song of, "Oh Come Let Us Adore Him." 
I couldn't help myself.  My mouth opened wide and out came the words of the carol.  I was just going to town.  All my loved ones know I have a singing voice comparable to a scalded cat clawing on a hot tin roof.  No pretty sound there. Did that stop me?  No way.  I was going to town.  Mel joined in. Oh how I missed the community carolling!
To finish the choir belted our Rudolf the Red Nose Reindeer and yes I was clapping and singing and moving to the beat. Oh, what the hell it's Christmas for God's sake. 
Then it was over and the old Post Office (which is now everything but a post office) was bathed in lights and Santa and ladders.  Another mesmerising moment.
Time to go home and we took our chances at the taxi rank.  In second place was a station wagon.  I knocked politely on his window and asked if he would take us home.  I knew the taxi sedan in front of him would be ok with this.  He took us home.  Drove through the police breathalyser patrol without being requested to stop.
We had a great night.  Yes I would do it all over again.  We'll wait and see.

Our school boy busker and Merv with Mel

Magnificent Christmas Tree in Forrest Chase Perth

A little Myer Christmas Magic

Merv and I enjoying the Perth Christmas atmosphere

Old Post Office building alight with Santa - amazing