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.