Party Poopers

Whether it's a party, get together or a fundraiser, there is no difference in people's reaction.  The group we're supposedly mixing with is nowhere to be seen but we can hear them laughing, sharing jokes and being jovial.  Just the way it should be.  Yes I agree, which is why I decide not to be part of it.  It's just too difficult.  If the group is outside in the chilly autumn air it's no good for Merv.  Just an everyday cold can turn into a lethal bout of pneumonia for him. 
I could chose to join the group and leave Merv by himself but I can't do this without berating myself, therefore we stay in the warmth of the room inside but there is no one to chat with so we sip on our drinks and I pour myself another wine or make another coffee.
I noticed people greeting Merv as his hand wavers in weird gestures in front of them as he endeavours to shake their hand as he used to do. I wonder if they are embarrassed or confused.  They remain motionless but some of them manage an animated wave.
Then they move on chatting and laughing to those who can reciprocate.
We recently hosted a get-together in the evening.  Everyone went outside or in a separate room and we were left in the kitchen/dining area.  There were people coming and going, helping to take things outside or helping with the cooking and serving.  I'm glad our guests had an enjoyable time together but we will be steering clear of further get togethers. 
Our friends with partners with HD and others where one partner has a disability physical or mental say exactly the same and experience the same behaviours.  The funny thing is when we get together with our HD/disability partners we sit the partners together. They sit and stare at one another while we sit, chat, laugh and have a whale of a time.  Then we remember who we are and feed our loved ones and encourage them to be part of the conversation before we go our separate ways.  Yes; they're just fed up and don't want to do anything but just go home.
It's just the way the world is.

Late Breakfast

I left a message with the person in charge almost a month ago.  A fortnight later there had been no response.  I left another message.  I was left hanging without an answer.  It seemed rather trivial and I didn't want to cause trouble but neither did I want the issue to be left unanswered.
A questionnaire arrived in the post from the same place I was trying so hard to contact.  This was the answer I had been looking for.
Merv had been in respite for two weeks and the day I picked him up he had yet to have his breakfast.  It was already 10am. I had eaten my breakfast hours before and was thinking more about morning tea!
I had enquired why he had to wait so long.  They said they had been busy getting others ready for outings but I was disturbed at the lateness of the hour and their lack of time management.   I voiced my concern while Merv chomped away on his porridge. 
The respite itself had gone well it was only this hiccup at the end.
A month later, two phone calls and a completed questionnaire I finally received a call from the staff member who manages the questionnaires.  She said she was appalled at the lateness of Merv's breakfast and the lack of response from relevant staff.  I agreed with her!
The lady had contacted the staff member who was under the pump in his work but was also apologetic as he had not returned my calls.   I have met this man in question several times.  A nicer and more gentle man would be difficult to find.  A more efficient gentleman than most. 
Thinking about him I would give him a tick, tick, tick but now he has a black cross as well.  I hope he doesn't stumble over that one!
I sigh... another situation shelved and put to rest.   Only the other day I contacted work friends I haven't seen for sometime.  They have rallied around to get me out of the house and help me keep my sanity intact!  We're booking a fortnightly get together at a coffee shop late afternoon on a Tuesday. 
I contact Merv's support agency and request a support worker to stay with Merv while I'm away.  It's only Friday but Tuesday is just around the corner.  They promise a support worker but so far I can only rest my sanity on a promise. 
If the weather is fine on Sunday I will take Merv to the movies to see Florence Jenkins.  It should be funny.  I am trying hard to make my caring role work without floundering. I have also booked Georgy Girl at the Crown Theatre in July.  We were fortunate to obtain wheelchair access tickets.
We both remember the 60's and The Seekers were a large part of Aussie pop music.  Did The Seekers go to London during their heyday and have hits there?  I think so....

A simple bowl of porridge

Big versus Little

Tell me is it the big things or the little things?  We often think it must be just the big things.  Major stuff like; death,  sudden impairment, maybe a drug or drink problem.  Of course those things are life changing but life changing also occurs over time.  It is like a cancer spreading it tentacles and snatching what is good and replacing it with what is unusable.
I go shopping every fortnight and being the creative person I am I look for activities which Merv is able to complete.  He can count money and tie plastic shopping bags into a knot to put in my plastic shopping bag holder! 
Hmmm those dreaded plastic shopping bags do come in handy at times.  Not so long ago I was rather green and possessed a bundle of material re-usable shopping bags.  All of which were either lost, given away or fell apart.  I now have re-useable fruit and vegie bags which little sis and I bought from the Eco shop a few weeks ago.  As one good eco attempt follows the other I am now collecting more material shopping bags and collecting less plastic at the check out.
I went shopping almost two weeks ago and had a bundle of these unattractive grey plastic bags.  I asked Merv as usual to tie them.  He tried and he tried again but his motor skills have diminished.  He was unable to tie them into a lose knot. 
"Damn it!" I seethed through my teeth.  I will just shove those damn bags (without tying) into their holder which hangs inside my pantry wall.  I wasn't angry at Merv, I wasn't angry at the bags I was just letting off steam because it's the little things which play havoc in our lives.
Merv also stopped crossing off the day on his bedroom calendar.  It has pictures of players in his favourite football team.  For years he has methodically crossed off the day before getting into bed at night.  Then it stopped.  I encouraged him to restart but to no avail.  Reluctantly I took away the pen which has sat in anticipation of the nightly big 'cross off.'   Another ability lost.
Huntington's Disease affects both the muscles and the brain cells. 
I haven't cried this week.  I am in control.  At least I tease myself I am.  I don't know where I am going or how I will get there.  I just keep doing the expected things each day in hope the sun will continue to shine and I will source the energy to keep going.

Dreaded no green shopping bags

keeping the dreaded bags tidy and out of sight

Flu Jab

Across Australia people of all ages are lining up at Flu Clinics to have their flu jabs (injection).  It's no different in our family.  Yesterday Merv's support worker took him to his medical centre for his.  Mel went to her medical centre yesterday afternoon for hers and today I went to my medical centre for my annual jab.  We have been doing this for years; always thankful we wont be getting the flu anytime soon.  The three of us now attend different medical centres.
Lots of my friends and a few acquaintances will share their; 'no flu jab stories.'  It is always the same and goes like this. 
"I never needed a flu jab before because I never got the flu and if I did it was just mild.  Then (date supplied) I was so sick I couldn't get out of bed and I THOUGHT I was about to DIE!  From now on I'm going to have a flu jab every year!"
Last year a good friend confided her own story with us.  She had gone to Melbourne with her husband during winter to see snow for the first time.  They had planned to go to sunny Queensland after a week in enjoying the snow.  Their journey was cut short when the lady came down with a bad case of the flu only a day after arriving.  Home they went and completely missed their well planned holiday.  I bumped into her recently and she made a point of telling everyone she is booked in this month for her flu jab!  Good for her.
At my medical centre the flu clinics had already finished, therefore I made an appointment with my doctor and the nurse later gave me my flu jab.   It worked out well as I needed a repeat prescription.  I also choose to tell my doctor what happened last week when I had an emotional meltdown.  I cried, she listened.  She was lovely. We both agreed it is my grief and loss which I am dealing with.
It's important for the professionals in my life to know how I'm going in my journey.  I have emailed our social worker.  She works with people with HD and their carers all the time.  She knows Merv, myself and our children.  She can see things I am not able to.  I am hoping she will provide me with useful information and advice.
This week I'm feeling much more in control and confident in my journey.  It's just one day at a time and I'm pleased most of them are good.

Flu Clinic - line up please!

Turning Tides

It was long ago in January 1996 when it first happened.  I had gone to bed and in the middle of the night I woke thinking of my father.  He had died the month beforehand.  My daughter at the same time had been hospitalised with psychosis and Merv had also been in hospital for an operation.  Three different hospitals all at the same time.  Merv recovered well.  Melanie improved but was plagued with ongoing mental health issues.  My father died.  I had cried many times but I had not yet grieved. 
I remember that warm January night; I began to cry but my soft tears turned to sobs and then I started to scream and sob at the same time.  Merv woke and reached out for me.  He cradled me in his arms and calmed me.  It was a release of my grief.  I had woken our children (then in their teens) and they asked me the next morning if I was alright.  Life continued.
Whenever I thought about my explosive grief on that night in January I was always thankful Merv was there to comfort me.
Twenty years later and Merv had just come home from respite.  We are back in the carer's role and all is well.  I know he might wet the bed as his routine has changed.  Two days later we have a speech pathology appointment across town.  I am ready for any scenario today.  I wake Merv and I smell the unmistakeable odor of urine.  I strip the bed, shower Merv and get his breakfast.  All is still good.
As he finishes his breakfast he stands awkwardly and rushes off to the toilet.  It is not urine this time but the other.  It is everywhere and there is no way I can clean him, the toilet, his clothes and get him to his appointment on time.  My world begins to slip from beneath me. 
I leave the room and seek refuge in my bedroom.  I am distraught and I cry and scream until I can no longer bear the torrent of grief which runs unabated from within me.  I tell myself to stop.  Over and over I beg myself to stop until I eventually do.  I sit on the bed and wonder what has just happened.  I am a mess.  I know this is so much more than toilet accidents. I have cried many times in the past 20 years but nothing like this.
Once again it is consuming grief.  Days later I think about the HD carer meetings I attend monthly.  They have been more than confronting with horrendous carer stories.  I had avoided thinking it could happen to me, but I see now my story is the same as theirs.
It is the grief  of losing the man I married almost forty years ago.   Grief of making the most difficult decision of all to place him in a residential care facility within the next 2 years.  Grief of not being cared or loved by Merv.  I know he loves me but how sad is love when it is can't be expressed. There are no hugs, no comforting words, there is nothing.  He says and does nothing.
I shower him for the second time in an hour, clean the toilet and floors and spray the matter off his clothes with the garden hose.  I ring the speech pathologist and cancel the appointment.
I send Mel a text message and asked her for a hug.  She rearranges her schedule and after Merv is sitting in his lounge chair watching his favourite movie I drive to Mel's house and we hug before heading out to Yahava coffee house where we sit in the sun drinking coffee, eating mandarins and sharing my grief.  After an hour we return home and Merv is still watching his movie.  I am alright, he is alright.  Life is alright again.
I reflect on the past two weeks of respite.  I have enjoyed each moment of freedom.  Is it cruel to name it freedom?  I have trusted the respite centre, visiting family and support workers to look after Merv.  I have kept in contact by email and photos.  There appeared to be no problems. 
In just two small weeks I joined the HD Carer Retreat enjoying the company of other carers while visiting local cafes, restaurants and places of interest.   Afterwards I went to Busselton with Mel.  Time was our own.  It was so good not to be on a time schedule.  We were just a short stroll away from the beach and the town centre.  We walked and ate well.  It was just delightful. 
After we returned to Perth my sister, Maureen visited for the weekend and we enjoyed just going out for dinner, the movies, shopping and stopping at little fresh food stalls in the Swan Valley.  We ate home made ice cream in a rustic shed which I had never noticed before.  The weekend was delightful, better than an overseas holiday!  It was all the things I needed to do before donning my carer's hat once again.
I've had the time of my life during respite and I've cried this week until I could cry no more.  Today I added strategies to help me cope better.  We can do this together but the road ahead is bumpy.  There will be more trauma but like they say, "It's just one day at a time."

Carer's Retreat sharing platter

at Cheese Barrel Restaurant - Yum

Mel - Busselton on the Beachfront

Dining Vietnamese

in Busselton

Carer's Retreat Koalas at

Caversham Wildlife Park

         

Delicious dinner with Maureen

at the Rose & Crown

                   

   

Sunday Brunch Pancakes

Bonsai viewing Sunday morning

I Lied

There are little white lies, big fat lies and lies of many colours. I think mine was just a white one.
I joined a new book club in February this year.  A book club with a rocky past.  All the other members have been attending for sometime.  They all know each other and share their lives both past and present. 
The very first attendance on a Thursday afternoon my treasured book club was cancelled only two hours beforehand.  There was a power cut which wouldn't be fixed for over four hours.  The book club was rescheduled for the following week. 
They welcomed me, a stranger in their mist sharing titbits of their lives both past and present.
This month I received an email saying,  Joan, Doris and Sylvia hadn't read this month's book and shall we meet next week?  I sighed with frustration.  I had already arranged for the Support Worker to stay an extra two hours and I let the book club facilitator know I had to cancel with 24 hours notice to prevent losing Merv's hours.
Then another email.  The book club was cancelled this month but come rain, hail or shine it would be on in April.
At least the facilitator  replied promptly by email saying we would be discussing this month's book and next month's book in four weeks time.  I sighed again.  I don't think there will be much book talk happening.
Then I lied!
I didn't tell the support worker's agency the book club had been cancelled.  My two extra hours were available and with my book in hand and book club chatter lies on my lips I escaped out the door into the big wide world!
No one would consider a thirty minute stint in the library would be fulfilling but I had the time and opportunity to chat to the senior librarian about my amazing adventures at the recent Writer's Festival in February.  I had her spellbound!
Then I parked my car in a tiny historic town close by taking the opportunity to delve into little shops of  creative arts and crafts.  I finished my time at my local coffee shop with my favourite coffee and a sweet treat.
If next month's book club is cancelled I wont hesitate to enjoy another two hours of glorious white lie freedom!

Charity Bequest

It's been a busy morning.  After getting Merv ready for his day centre I am doing my usual one hour walk around the block.  The weather is already warming up and I leave in haste to get back to my nice cool house.
I ring Mel and leave a message.  She rings me back and we chat.  My iPhone rings again.  It is the speech pathologist booking an appointment for Merv.  I continue on my walk stepping up my pace.  I am sure I slow down while chatting on the phone.  A police car with lights flashing has pulled up a young couple on a side street.  I strain to hear the ongoing conversation but the traffic noise drowns it out.  They appear quite comfortable even with the flashing lights.  I turn my attention to the path on the main road which appears before me. 
My iPhone rings again.  It is CBM (Christian Blind Mission),  a charity group which I donate to occasionally.  I possess their annual prayer diary and religiously pray each night the caption for the day.  They help the disabled in third world countries.  I wait for the lady to ask for a donation.  She tells me she isn't going to ask for one.  There is always a catch.  I walk waiting for her spiel to start.
The lady tells me her name but it is soon forgotten.  She tells me about some of their ongoing projects and how immense it is to fund all of these.  I'm still waiting for the catch.
She asks me as I stride along if I had considered leaving a bequest for CBM in my will?  I think about this.  I have read about it on the back page of their prayer diary.
Then I tell her that could be possible because as things stand now I will possibly outlive my husband and both my children.  There will only be me left. 
I tell her about the Huntington's in my family.  I don't know why but she asks me if they are symptomatic.  I inform her they are not.  My memory just for the briefest moment remembers long before they are symptomatic there are ongoing mood changes ten to fifteen years before onset.  I don't know why I wasn't informed of this as Merv and I had years of marriage counselling (my mother said she didn't believe in this, she would just throw a plate at my father to resolve an issue!) Merv who was always a gentle soul suddenly argued continuously, showed hostility and aggression towards me.
Now I find out a simple trip to the neurologist and a little pill could have stopped all that!  I really thought it was male menopause and I would often drive for hours at night just to get out of the house.  I even considered buying a ticket to Queensland and changing my identity.  The things we consider when we can't find an answer!
Back to my phone call at hand I tell the nice lady about the gene silencing drug being trialled at present. It has been trialled in mice and monkeys.  At present there are three human trials happening in different countries.  The drug has even been known to reverse some of the symptoms of HD.
We finish the conversation and I once again increase my walking pace.  I ponder as I walk.
Hopefully my kids will be at my funeral.  That is what I want and that is the way it ought to be. 
If so, I will leave my money to my kids, they just might find use for it. 
I can have all of these conflicting thoughts but often the reality is different.  We will wait and see.
If this drug doesn't work then we live in hope of one that will.  We hope that it isn't too long to wait.
I saw my counsellor only two days ago but I find I need to chat to relieve my stress.  Maybe the lady on the phone also needed a break from asking people about their will?