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

Genie in the Bottle

I've done it before, wearing blinkers while looking for a sophisticated solution when a simple one is looking at me!  Poor Merv he had lost his dignity wearing continence pants which didn't do what they should.  Day after day we battled with wet beds and soggy pants.  There was washing, cleaning and more washing.  I was pulling out my hair by the handful.
We had discussed a bottle.  My thought were concentrated on a bottle of Merlot, Pinot Noir or deep red Shiraz but none of the above.  We were discussing a urinal bottle.  It just seemed so simple.  Mel and I visited the disability store where the assistant discussed the various bottles. We passed on the one with a push on lid.  Merv's fine motor skills no longer do him justice.  We settled on the no-spill bottle which comes in a soft shade of blue and no other colour.  It cost three times more than the one with the lid.
I had forgotten the many times Merv had been in hospital as a younger man.  He took to his bottle like a duck to water!  I had placed towels, mats etc around the proposed area only to find none of these were needed.  The very best part of the story is his bed is dry and his dignity and a certain amount of independence returned.  He still is unable to walk unaided in the house after his fall which damaged his calf muscle.  I am hoping it will heal in time and Merv will be able to walk by himself once again.  I can only hope.
Yesterday his physio and her assistant visited as the afternoon cooled after a heatwave morning.  They had Merv wheelchair walking and doing a range of exercises to strengthen his calf.  They also  showed Merv how to walk to the toilet (with assistance) but stopping at each door frame, holding onto the sides of each frame before moving to the next one.  I would never have thought of that.  He is enjoying this exercise which helps him gain his balance and slows him down.  He has a habit of going ahead at top speed to reach his target.
I sigh heavily.  I am happy not to wash sheets everyday.  Emptying and washing the blue bottle is a small price to pay.

Regaining dignity and independence

Stroke Me Down

"Maybe he had a stroke?  I want you to ask the GP for a CT Scan,"  retorted Merv's speech pathologist.  I grunted, I made all the right noises but I was thinking - 'Get a grip girl, he had a fall, he choked on his lunch and pooped his pants.'  Yes all within two hours from returning from his fortnight respite.
Three days later Merv fell before I awoke.  He was on the way to the toilet.  When I finally awoke, completely unaware of the drama that had occurred Merv was sporting a swollen eye which later coloured to every shade of black, a red ring on his forehead and several bumps and bruises.  I was horrified.  I cancelled Merv's support worker and made an appointment with his doctor.  His doctor of course had a day off and we saw a semi retired gentleman who resembled Kris Kringle.  He assured us nothing was broken, his eyesight was fine and no concussion. 
We celebrated our 40th Wedding Anniversary only three days later, complete with his black eye! Merv and I visited the Lavender Café and enjoyed lavender scones with jam and cream before meeting with Dustin, Grace and Mel for lunch at our favourite local restaurant. Throughout our marriage I had never imagined Merv would be unwell or in a wheelchair.  Life often turns out differently from our dreams of long ago and our expectations to today.  It is a time to reflect and make the most of what we do have.
Nine days after that fall and he still can't walk unaided.  I walk him everywhere in the house. He's wearing continence pants and I wake at 5am to take him to the toilet after having washed sheets and bedding for three days in a row.  Hopefully the early start will continue to be successful in keeping a dry bed.
His left leg is sore and it's time for an x-ray.  I know as we get older (is 62 old?) our body takes longer to heal.  Is it just bruising, the lack of confidence or something more sinister?
Do I think Merv had a stroke?  Probably not but her words encircle my mind causing confusion and indecision.  It's just another busy week ahead with two dentist appointments, two doctor appointment and a number of other commitments. 
I only want Merv to be able to walk around at home by himself again which will increase his confidence and his lost independence.

Break Time

It's been a long month. Spring has lost it's way with below seasonal temperatures and heaters still gobbling up more energy and adding to our power bills.  When I packed Merv's suitcase for his two week respite stay I added a mix of winter and spring clothes.  It is so cold for October.
He seems to accept his fate at his regular respite centre.  He knows the residents, the staff and I know he will settle in well. Dustin and Grace visit each weekend and often take him out for a chocolate drink and cake.  His service providers allow his regular support workers to visit on Tuesdays and Thursdays.  I am pleased he gets some one to one attention.

As usual I just feel guilty.  I always feel guilty but what can I do?  I just need a break from the humdrum of everyday life.  There are no weekends off, no public holidays just four weeks a year respite.  Admittedly we have support workers visit each week and Merv attends two day centres during the week.  There are no set times for being a carer.  My job begins the minute I take over from the support worker and I get a break when he is tucked up in bed after another long day.  His personal care needs attended to with precision and care.  Then it's time for me to relax before I head off to bed to start all over again the following day!
Knowing there is time to stop during respite to smell the roses, to recharge my batteries as one would say which proves just the thing to keep me going.  There are times when I'm happy and joyous and other times when the world appears to sit upon my shoulders bending my spine and kicking my confidence.  I cry, I scream, I swear before I pick myself up, dust myself down to start all over again.  That is just how it is.
I often like to travel abroad during my respite break but this time around selling our house to downsize (especially the garden) is taking most of my time.  My family are helping with the garden this weekend.  I've ordered the mulch, compared prices for plants and hanging baskets while balancing my time to rest, catch up with a movie or two and spend time with friends and family.
Yesterday my sandstone floor which I love was cleaned and resealed.  Was it really that dirty?  Yes it was but it looks amazing now!
Between work and play I have enjoyed both worlds.  I spent 3 days last week travelling down south to visit family and friends.  I had an amazing time.  Just to relax, have fun and not worry about the time was rejuvenating to my body and soul.

Merv enjoys an outing with Dustin and Grace last week

my lovely cleaned and sealed Sandstone floor

Next Monday Merv returns home.  I look forward to seeing him, sharing a hug and my adventures before once again resuming my carer/wife role.