Permanent Care

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

Christmas Memories

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

Canal cruise to see the Christmas Lights

Merv enjoying the canal cruise

local fireworks

Santa at the pageant

A Prayer Posted

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

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

Respite Again

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

Dustin & Grace visit Merv in the care facility

Wheelie A Mess

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

Virtues of My Job

I wonder what people think of carers sometimes.  Do we have it easy or do we have it hard?  In many ways it is a bit and a lot of both.
Most of us have done it in the past.  Stayed in a job you didn't really enjoy.  We stay because it is a job.  I remember staying on a teacher's assistant because my long service leave was due the following year and I didn't want to miss out on it.  I decided I deserved it.  Maybe; maybe not.
Maybe coming out of the winter weather and into a brighter Spring will change me.  I love Merv and willingly care for him while I am able.  I'm just in a bit of a rut.  It's more difficult to get out and about with the limitations of the wheelchair.  If the world was flat it would be an easier place to conquer!
As a carer I should be prepared for anything and fit enough to do it.  Since moving over seven months ago I've put on five kilos, not a huge amount but I don't seem to be able to shake it off.
I tried before my big 60th to trim down to no avail.  I'm trying now but the excess just sits around with me making lewd jokes and swearing never to leave me!  If only.
I've tried cutting back, cutting out and even persevered with those damn shakes.  Nothing is working.
Today I worked for an hour in the garden and enjoyed a brisk hour walk with Mel by the estuary.  Alas By the end of the day  I still reach for a glass of red and some tasty cheese.  Definitely my un-doing.
I'm a sucker for any fad diet.  Write a book, design a funky or totally ridiculous eating plan and I promise I'll buy your book.  I might even give it a try after reading the virtues and testimonies inside.
A friend of mine recently told me how her son and his family are having fabulous results on the Primal Diet by Mark Sisson.  She explained how Joe had gone from 84kgs to 75kgs.  Eagerly she added they were all feeling so well and sleeping like babies.  Then to make it even more convincing she added they had stayed for a week or two and enjoyed the food and were also feeling great.
Google showed me all of Mark's books and where I could buy them from.  My local bookshop person said they would have to get them from the US.  Hmmmm I said.
Then it happened,  I closed my iPad shutting Google down.  I don't need another diet wonder book or lose weight plan at this time in my life.  I just need to look after me and my family (and maybe drink a little less red wine!)

Form it to Me

The garden is ready for the landscaper to come in.  We've dug up all the grass, cut down the fruit tree growing too close to the new paving.  Then we  dug out the root bound stump, closed off the reticulation and then dug up the pipes no longer in the right place.  I worked from morning to evening.  I wasn't just dirty, I was filthy from head to toe!
The guy on the phone was impressed when he explained the landscaper was running a day late.  I told him only two years ago I walked across England with my sisters!
Why have I spent the last week working so hard? The answer is simple.  Physical work and a garden plan stopped me from ripping open the Centrelink forms and getting a little bit closer to putting Merv into permanent residential care.
There's no getting away from it.  It not just about the forms and the bureaucracy, its about emotions, about love, about commitment and those damn marriage vows!
This evening when there were no more digging, raking or weeding to do I ripped open that form.  Not just one but two posing as just one!  I read, I read and read again.
I'm not a stupid person but what was all that stuff at the end? The bit about if you have authority to sign for the person, you can't sign the bit at the very end but then it turned on itself.  Oh if I wasn't confused I certainly was now.
I googled and I googled  a bit more, then I put the forms down and pretended I hadn't even opened them.  I poured myself another glass of red and enjoyed it with a chocolate bar I had been hiding behind the tomato sauce bottle.

To Wake or to Party

Life continues to roll on at a thunderous pace.  I'm trying to concentrate on only one thing at a time but my head is a muddle of everything going on.
Among the muddle is reality.  Reality that Merv's health will and does continue to deteriorate.
Where my eyes were covered with blinkers the light of reality allows me to think clearly.  I've been to Centrelink, I've had a tour of at least two care facilities in the area.  Nothing will go ahead until I have the Centrelink forms filled in and returned.  They sit idle in the bottom of some random bag.  I dread filling them out, not because they are tiresome or time consuming but they take me a step closer to Merv going into full time care.  I am like the first time diver bouncing on my toes at the end of the high board.  I say to myself, 'take your time, the forms will wait.....maybe tomorrow I will hunt them down and face them head on.'
Today Merv and I updated our wills.  The last time we did this was in 2004.  A lot has changed in this time, including buying our new house.
With this under way the next step is to prepay Merv's funeral plan.  There are a half a dozen funeral businesses close by.  They range from relativity well priced to ridiculous!  They are offering  the same thing, just different prices.
Reaching sixty usually means a person has attended a whole heap of weddings and probably more funerals.  They usually follow a similar pattern.  Except for one,  A couple of years ago I attended a 'Celebration of Ian's Life.'  It was held in a community centre.  It was't a funeral though we congregated together to reminisce and celebrate the life of a dear friend.  There was no coffin, no church leader or celebrant.  No singing.
People sat around tables chatting and helping themselves to wine, beer and morning tea,  Ian was a big fan of cheesecake and most things sweet.  The food he had enjoyed was served by trained staff.  His widow wore a summery floral dress.  She chatted and laughed with guests,  This was no funeral.
His brother and a good friend stood and shared their stories of Ian.   We all felt that Ian was right there enjoying the atmosphere and banter.
I left a card.  I choose a blank card and penned a personal message to his widow.  Her husband died from a stroke, but he also had Huntington's Disease.
Today as I remembered that delightful morning I wondered if Merv would be happier with a celebration of his life with friends and family enjoying  morning tea rather than the sombre funeral service in a chapel.
Next week I'll ask him!

Bunjee Jump

I edge myself cautiously to the precipice not daring to look down to the gully below.  The safety harness is attached to me and I listen questionably to the operator who expects me to jump.  Should I jump or should I chicken out?
OK, STOP right there!  This is no bungee jump, this is a life decision we are on the precipice. There is no easy answer and no right answer.  What is right for one person or family is not necessary true for all.
Before leaving the city six months ago I spoke candidly to a trained nurse at the HD association.  She provided me with a list of care facilities to inspect.  After a bit of research I cut my list to three.  I have visited two already.  The implications of what lies ahead creates a battle scene in my head.
I remember attending Huntington's group sessions for carers when life with Merv was easy and no major decisions were necessary.  I had sat glued to my seat barely moving or flinching a muscle. I was  horrified, mortified of the group's real stories of their caring journeys.  I wanted to run, to hide and not be found.  If you hide the Huntington's will seek you out and cause you pain.  There is no hiding place.
I remember vividly a story I read about a male carer in a similar position to myself, he was just beginning his journey with his wife and was also horrified of the stories of other carers.  He related the story of hearing about 'the shit hitting the walls.'  Years later he confessed that was also happening to him.  Their journey had advanced and now his story was the same as the rest of the group.
Unfortunately my journey has also caught up with us.  There is 'shit' everywhere and I'm cleaning it up and poor Merv as well.  I don't remember at the alter on our wedding day when I said, "For better or for worse" never realising it meant cleaning adult shit as well.  Babies; well that a whole different matter.
Do I jump or do I chicken out?
To be fair, to be sensible, to be realistic I will get the ball rolling.  I'll put his name on the list of the local care facilities but when I get that phone call stating there is a room available for him I am the only one who can make that decision.  If I say 'no' his name will stay on the list.  If I say 'yes', our story will change.
Life is a story continuously changing.

Life decisions - always easier with apple pie and cream

Smelling the Flowers

I know I can count the number of summers and Christmas's Merv will enjoy in our house before being admitted to a nursing home.  There won't be too many.  Only the other day I told him when he can no longer stand (weight bear) he will need to.  His walking is much more animated and he gets breathless and sleepy easily.  Not being able to weight bear is my bench mark for his care to be transferred to a nursing home.  If only I had a magic wand.
Summer is knocking at the door and summer days enjoyed outside beckon us.  Our alfresco area is without a view of the sky or garden, therefore my fantasy back garden evolves in my mind.
Celebrating six months in our new house next Sunday and looking back over those months we have done quite a bit to the house including the front garden but except for the veggie garden not much else.
Thank goodness the back garden is so much smaller than our last one!  It's not what works for us.  There is a large area of grass with concrete borders for the flower gardens.  There is also a outlandish purple and pink pergola.  Sad as it may seem I'm getting used to the colours!  My idea of painting it in the Spring may or may not happen.
At the moment I'm busy digging up the grass, yes all of it!  It started with my blunt shovel before I swapped it for my $8 garden fork from the hardware store.  It worked a treat until it started to bend out of shape.  Oh well, another trip to the store for a better quality one.
Only a few months ago my quest was to have a gazebo built which will look out over the back garden but what is the point if the garden isn't finished?
I want so much to have a wheelchair friendly garden path where Merv can see, smell and touch the flowers and marvel at the birds who will visit our flowering native plants.  It is clearly in my head.
Merv already has a wheelchair ramp to the back garden.

our home grown veggies, yummy...

I have contacted local landscapers to quote me on my dream while I furiously dig up the damn grass! I will plant the plants myself and hopefully will choose them wisely.  It is so easy to plant things which grow out of control and need a bottle of poison and a lot of digging to eradicate them!
I have an ornamental windmill as the centrepiece.  A path will wind around it to all areas of the garden for wheelchair access.  Oh, may my dream become a reality....I'll keep you posted.

The digging begins...

Mel digging, bless her

Believe It Or Not

I think back to the many times I thought I had it right.  My plans, my thoughts, my doing.  Mostly I got it right, sometimes it was just a bit too far fetched and other times I just got it so wrong.
Like the recent respite, it was just wrong.
Merv came home yesterday, his face was red raw, he wasn't shaved properly.  I asked him if he had a good time in respite and he remarked he had.  He knew nothing of why I had turned up suddenly last Tuesday to feed him with his favourite meal.
When your thoughts invade your very being and your mind is in turmoil you know you need to do something to put it right.  Gut feeling, yes that what drove me to pick up the phone and contact his regular respite provider.  From experience I know you often have to book a year in advance.  I asked if on the 'off chance' they had respite available on the dates I needed in November.  She took just a moment before replying she did.  I booked it.  I know Merv will be fed properly and I won't need to worry.
I thought about why I had it so wrong.  Was it because the respite facility was only ten minutes away and promised high care facility and care?  Yes, I believe it was.  A little like a wolf in sheep's clothing as the expression goes.  I was fooled, I fell for it and I had my fingers burnt. We live and learn.
Everyday we hear of people who are duped, scammed, conned and fall victim to unscrupulous, immoral person/s.
It wasn't so long ago a friend of mine, a bank manager told the story of a lady begging her for a loan to pay someone in Nigeria who promised her a whole lot of money.  My friend insisted it was a scam, her customer didn't or couldn't believe it.  The bank manager shook her head and of course no loan was provided.  Thousands of people with the same expectation lost millions of dollars.
Today people are still duped by scammers on the phone impersonating the tax department or other government departments.
Just a little joy, an unexpected windfall, a miracle, a well deserved blessing, whatever we call it, it's not impossible.  Many times Merv and I have been blessed with a windfall of an unexpected nature.
We have blessed with funds from my Uncle's passing, he had no family of his own.  We won a short holiday at the Royal Show to Albany complete with accommodation and travel.  How amazing was that!
Merv's employer at times blessed us with unexpected large sums of money from a couple of hundred dollars to over $3,000.  Even when he had to leave work due to his declining health we were able to apply and had approved his disability insurance on his super.  Because Huntington's is a genetic disease we were never sure if it would be paid out.  Like everyone else we had just hoped for the best!
I hope we never lose our aspirations to aim high, to hope, to trust and enjoy life.

Always looking out for Merv and keeping him happy!

Horror-spite

I was wearing thin around the edges and I felt Merv's week in respite would help us both. He's been in respite so many times in the last seven years it's almost a piece of cake getting him ready, packed and delivered!  On Monday he had a forty minute trip to his Physio appointment first  but all went well, even the rain decided to have a bit of a break!
All hell broke out when we returned home with less than an hour for lunch, toileting and getting Merv into the car.  I went to open his bedroom door only to find it locked from the inside,  I twisted the knob, I pulled it, it wasn't going to budge.  I found Allen keys, screw drivers, knives etc but nothing would release the lock,  finally I twisted the plate around the knob and used the screwdriver to remove the screws.  Off came the doorknob and a mighty push which exposed a hole in the door to the room beyond, but it was still locked fast!  On the metal bar which remained in the exposed hole was a little pin which I pushed.  Presto the door opened and a wave of relief swept through me.  Another trip to Bunnings for a new door knob without a lock is on my list now.
We arrived at the respite house all smiles and apprehension but soon the staff were in full swing with umpteen forms to be filled in and signed. All appeared to be going well.  I unpacked his suitcase and belongings at a leisurely pace and then realised to my horror I had forgotten his toothpaste.  Not just any toothpaste but the Biotene toothpaste for dry mouth.  A chemist only product!
Unfazed I said goodbye to Merv promising to return later with the toothpaste.  I trotted off to the shopping complex indulging myself with a variety of purchases.  I leisurely visited  many of the newly opened  shops,  I nagged myself to remember the toothpaste, yes I remembered!
It was almost dark before I returned to the respite house.  The carer in charge let me in and remarked Merv had not eaten his Baked Beans.  Baked Beans? I remarked,  Merv hates them and never ate them before becoming unwell.  I also questioned why he would be eating them on a Soft Food Diet as per his Care Plan and Swallowing Care Plan.  There was also an issue with him using a sipper cup which he shouldn't use.  The poor woman asked what she could feed him, I believe she finally gave him pureed fruit and custard.  I was devastated and wrote a long email to both Merv's Speech Pathologist and the Admissions Officer at the respite centre.
The next morning I received a call from the admissions nurse who assured me they would sort out his meals.  I rang at 4pm only to find they had nothing sorted for his evening meal.  Ok I said, I'll be there in 10 minutes with a tin of his favourite spaghetti and cheesecake, which I did.  I had hoped the carer in charge would take these items from me, but no I was encouraged to heat and serve his meal.  I  reported all of this to both Speech Pathologist and Admissions Nurse and Officer the next day.
By this time I was ropable.   I looked at the fortnightly menu the respite house had sent the Speech Pathologist and myself listing the food items Merv could eat and those he couldn't.
Again the next morning (day 3 of respite) another person rang and explained what they had put in place for Merv's meals.  She assured me I no longer had to supply meals.  I made sure she understood if I didn't hear back from her by 4pm I would be delivering pasta to him at 5pm.   I heard back.
Now I have a dilemma whether to let him stay there for the next time we have  booked respite for him being for two weeks block.
 I thought long and hard about it.  There is only one solution - to ask Merv if he enjoyed his stay and whether he would like to go back.  I'll do that on Monday when I pick him up.

Winter Blues

I had a list.  I don't always make a list of what needs to be done but Mel was on hand and I asked her to jot down a list.  It was just one of those dull type of days.  The weather was cloudy, drizzly and chilly.  The list didn't reflect much of any importance - just a list of things which needed to be done.
Then my mobile rang.  I ran to grab it but I was too late, it went to message bank instead. 
There is nothing worse, at least it seems that way at the time of a message received and you don't know who rang or what they want.  I took the bait and listened to my message. 
Thank God I missed the call.  One of my acquaintances, someone I know and meet from time to time wanted to visit me at my house today. 
I looked around at the mess.  Unmade beds, the floors that need the tough touch of my Dyson and maybe a swipe of a mop. Clutter in my kitchen which has also found it's way onto my dining table. I shook my head. The week has been full of sorting out Merv and Mel's community service issues, forms to complete, sign and send.  Phone calls made and people who expect me to chase them up. Most of which is yet undone.
No I don't want any unexpected visitors today thanks.  I just want a day of not much at all. Just to cross off a few items on the day's list on this dull grey day is all I wish to achieve.
I left a message on her phone after I had returned home a few hours later.  I explained that Friday is my day to get out and about while Merv is out enjoying his day centre activity.  I wonder if she will bother to contact me again.  I should care but I don't.  I should make an effort but I know I wont.
When the sun is warmer with the thrill of spring or even when summer shows promise I might ring and suggest she visits.  Or maybe I won't.

My dull grey day

Happy Chatty Merv

It's been awhile but life has continued for the best part for the better.  I had battled with myself whether moving south of Perth was going to be a good move for Merv.  I had to let it just happen to find out.
I love 'hindsight.'  It is amazing what we learn from looking back. It's not always good but it helps us to make better informed decisions in times ahead.
Dear Merv - his walking is just absolutely horrid and his response time for doing things, such as getting ready to get out of his lift chair doesn't appear to have changed.  It wont be long before he will no longer walk aided in the house.  He will use his wheelchair inside and outside at all times.  I can wait for that.
Merv continues to enjoy the footy, tennis, TV games shows and those ongoing cooking shows.  All of them require an understanding of the rules and buzz of your favourite team/contestant in a fight to win!

I don't need to tell family and friends (even his specialist) that Merv is talking so much better and joining in conversation where he feels comfortable.  Today he said a whole complete sentence when Maureen was visiting.  I am chuffed with delight!  There was never any doubt Merv could understand and follow a conversation but he rarely added a comment or entered the conversation.
Now I feel like breaking out in song, "Look what a change of scenery can do......"
When we moved I felt the urgency to have Merv's name on the list for permanent care at the local aged care hostels.  Now it's the furthest thing from my mind!
I know it can't be avoided altogether.  The future will continue to bring trials and traumas of which we will deal with.  There will come a time that Merv will become a permanent resident in an aged care facility but at this point of time it wont be anytime soon.

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.