Three Weeks

Just a little more than three weeks since Merv went into the care facility.  Overall I must say I'm happy.  Oh so very relieved to give away the ongoing personal care and toileting issues.  Neither of which I miss!
I miss him being here.  I loved it when he sat comfortably in his reclining lift chair.  Care free watching sport or a favourite movie.  I would sit with him for just a while in between cooking, gardening, cleaning or answering phone calls and emails.
I rarely seem to be at home anymore.  I'm sorting stuff out at the facility!  Today I arrived to find him in the clubhouse after his Physio session wearing his cute little pyjamas!  I was horrified and wheeled him with haste back to his room and promptly changed him into 'blokes clothes.'  So much more like him.  Bedtime should never be showtime, at least not for an 63 year old bald headed bloke!

The manager decided to photograph his pj's to prevent the caseworkers mistaking his night clothes for day ones.  Problem solved.  While that was being solved and Mel was delighting herself playing bingo with Merv in the clubhouse I ran around buying TV number four.  I know no-one who has four TVs in 23 days.  It cost a heap more but if the damn huge button remote doesn't work I know I can buy a Sony big button remote which will work.  Now I have to squeeze it out of the box, attach those damn legs without drinking a glass of wine first then tune the damn thing.  I'll hopefully attempt it before 'wine time.'

Today his new recliner/lift chair is due to be delivered to the care facility.  My phone sits next to me to ensure I don't miss the call.  I hate waiting for the call.  They never call when you want them to.
Next week I have arranged with his community service coordinator to have afternoon visits four times a week.  The girls will play UNO, games, take him for a walk or listen to music.  I imagine I could just lie on my bed with the autumn breeze gently cooling me.  You know of course that is unlikely to happen.  Possibly never.  More likely I'll be having fun at the refurbished shopping centre or gardening, cleaning or cooking.  Oh well.  Mel and I have plans to take a day off and take the train to Perth on just get out on the open road.  It might just take a while yet.

TV 1 -JVC the DVD player didn't work

TV 2 - LG too small

Kmart Big Button Remote

TV 3- Linden cheap won't sync with large remote

TV 4 - here's hoping

A Moment in Time

There are numerous times in my life I remember well.  I know where I was when I heard Elvis had died.  I was holding my baby son of only 4 months.  I couldn't believe it was true.  It was long before social media and we relied on radio announcements and breaking news breaks on TV.   I was driving my Mum home when I heard Princess Di had died from a traffic accident.  I was driving in the northern suburbs when I heard Steve Irwin had died  The same goes for  the deaths of both our parents and my brother's little girl who died at eleven.  I remember each moment in time.   Each was a momentous moment.  Fortunately not all moments in time are death related.
I have dates, places and memories of family celebrations and milestones.  Then there is Thursday 1st March 2018.
Merv was in respite in Bunbury when I received the call from the care facility.  I had filled in the paperwork, taken Merv with me during a walk through in January and now after a six week wait a permanent room was being offered to us.
I had imagined the phone call in my head, playing it out with different scenarios.  I had already bullied myself into politely saying, "Yes."
I listened to the spiel of my caller offering the room and then I said, "YES"
Merv came home last Wednesday afternoon from his nine day respite and spent one night at home before driving him to his new home in the care facility on Thursday 1st March.
Did he fully understand when I explained slowly and carefully what was about to happen?  I hope so but I can't be sure.  So far he has accepted his new home is not the one he moved into twelve months ago; the one I live in, the one he no longer does.
My friends said I should be tearful and I wonder if I am bad because I didn't.  I felt relieve that others will share his care and the responsibility which comes with his declining health.
Yes I was relieved.  It doesn't mean I love him less.

Good News Mel

When times are tough it's good to hear and celebrate good news.  While Merv's health continues to deteriorate, my face grows longer and my heart beats faster. I know it's just a matter of time before a room becomes available in the care facility for him.
Today I took Mel (38) to Perth to Neurosciences to continue in the ENROLL research study.  After endless questions Mel stayed in the room to answer more questions and I was asked to sit in reception and fill in the carer's questionnaire.  I do the same each year.  I wondered if my answers were the same as last year and the year before that.  I feel my toes carefully balanced on a precipice.  Don't lean forward I hear myself shout.
We discussed Mel's mood swings and all the things which have happened in the eleven months since moving house.  I don't feel so bad now.
Finally we are in the room with the head neurologist.  He brings comfort after examining her through a series of questions and movements,  He assures us she is not showing any Huntington's symptoms.
Relieve wraps its comforting arms around me in a persuasive hug.  I am comforted.  Mel is joyful.
It is known to many that Mel moves and shakes, not all the time but when she does she does it with gusto.  Her doctor years ago called me with her concern and asked for me to take her to Neurosciences.  Anxiety, a nervous disposition?  Who knows, who cares?  All I know is she is not currently HD symptomatic.
We rejoice.  Family and friends rejoice with us! We will be back to do the tests next year.  I don't think of next year only this one....

Best Behaviour

It's almost February, not sure what happened to January.  Merv has known for over a month that he will go into permanent care.  After visiting the facility with him four weeks ago I answered every phone call with trepidation.  I thought the call to say they have a room for him would come quickly but it's still an unknown.
I have booked future respite because I just don't know when that dreaded call will come.  I have said to myself I have to say "Yes".
The sad fact being you only secure a room when someone leaves.  They usually leave because they have departed our world.  That is the sad fact of a care facility; it is usually the last port of call before you are called home.  Yes, I know that's just how it is.
Since our tour of the care facility and a nice little chat with the Admissions Officer, Merv has been on his 'best behaviour'.  At least this has made life a little less stressful but there's no backing down now.
Of course it might just be the continuous tennis keeping Merv better mannered!  I suppose we will never know but whatever it is I'm happy for it.
Merv has new glasses, visited the dentist and awaiting another filling next week.  He has endured a trip to the podiatrist and on Tuesday it will be the hairdresser.  It only takes a few minutes there as he has little hair.  We bought him a new JVC TV with built in DVD player for his new room.  He has a new digital radio.
I'm running out of things to do before he goes.  There are as usual still clothes to buy and labels to sew but I think a few fun outings are now needed.
This move of course is not the end by any means.  After he moves into the care facility I will still take him out for the day.  I look forward to sharing fish and chips with him at Cicerello's on the foreshore.  Long walks (wheelchair) along the foreshore and other places of interest.  I won't have to worry about his washing, his shopping and cleaning up after him.  There will be more time to enjoy just being with him. No longer his carer but once again his wife.
Merv can no longer enjoy scones with jam and cream as he used to.  Instead I crumble the scone and layer it with strawberry jam then smother it with cream,  A de-constructed Devonshire tea!  Merv loves it.
It's time for the Australian Open men's final.  Merv has devoured his cheesecake and drank his Milo using his special 'Safe Straw'.  He's going for Roger Federer.  Whether he wins or not won't really matter, he just enjoys the tennis.  Winter Olympics begin Friday 9th February......

Broken Dreams

As the clock struck midnight on 31st December many of us made New Year's Resolutions some of which are already forgotten.  I'm still deciding what mine can be.
One thing I knew for sure this new year will be filled with gigantic changes.  Merv will go into permanent care.  I'll begin looking for a job as I'm too young to retire at 60.  Just lots of changes which I anticipated before that clock struck midnight.
Then there are people with plans of inspiration and joy awaiting them before their worlds are turned upside down in despair.
A family I know who lost their father in the last few years suddenly lost their son only a few days ago. He had a heart attack.  He was just a young man, not old at all.  Whatever their family expectations of the coming year; they are now dashed, splintered and unrepairable.  Such grief for a family still grieving.  It is unexplainable.  Though I don't know them well, I felt the rawness of their pain and grief.
"So unfair",  I shouted out loud to myself.
Huntington's Disease is unfair but we do have time to accept and to fight.  We can put plans into action, we can start the 'Bucket List' earlier is desired.  We prepare ourselves, we prepare others and we wait for symptoms, we wait and hope there is more waiting time available before the dreaded symptoms appear.  Recently there is news of a lumbar injection trial which is showing positive results in reducing HD symptoms.  The trial is still in it's infancy but everyone with a link to HD is excited and awaits further research results with much hope.
Merv's father wasn't so lucky.  He went into hospital at the age of 65 thinking he had suffered a stroke.  "Huntington's Disease," we all said.  "No, never heard of that!"  we chorused.  We choked when we learnt it is inherited from the affected parent.  Each child has 50% chance.  From Merv's father, Merv received the gene and thus it continues to the next generation.
A family, any family can be devastated by illness or loss.  It takes the strength of all to continue on to  offer hope and support to each other.

New Year's Eve celebrations

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