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