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!