jmgoyder

wings and things

Jun 29

Remorseless disease

by jmgoyder

This was yesterday….

Ming and I are in the nursing lodge visiting Anthony who is wearing his shark eyes – unblinking – and the lack of expression on his face (which is a Parkinson’s disease symptom) makes him look angry. He can’t swallow properly anymore, so he has a constant drooling problem (another Parkinson’s symptom). Then he wants to go to the loo and I try to get him up off the chair and don’t have the strength without Ming’s help. Then, once standing, Anthony freezes and can’t walk (another Parkinson’s symptom).

I try my old method of saying, “1,2,3” and stepping my own feet just ahead of his, but he doesn’t move. Ming and I half carry, half push him to the loo and then Ming says we should get a nurse, but Anthony says no, so Ming withdraws from the situation and I try to get Anthony into the bathroom but I can’t without kind of shoving him and pulling him and getting teary and angry. “Please, Anthony, it’s just a few steps – please walk!” I shout/whisper. In the background Ming yells, “Get a bloody nurse, Mum!”

I leave Anthony clinging to the toilet rail attempting to wee and go back into the room where Ming sits on Anthony’s bed, his face furious. “You are so weak – get a nurse!”

“He doesn’t want a nurse; he wants me,” I hiss, furiously. “And I am not weak, I am strong! Just go away.” My anger is undirected; I can’t decide who, or what, I am angry with most.

I go back to the bathroom, attend to Anthony and try, with great difficulty to bring him back into his room. It takes 10 minutes to get back to his chair and, when he is seated, he asks for his hanky for the dribble and I pick it up and give it to him. I flinch a little and Anthony says, “It’s just saliva; it won’t kill you.” By now his shark eyes have gone from angry to sad and I feel terrible for having snapped at him.

“When am I coming home to the farm?” he asks me and I say on the weekend.

“Am I staying the night?” he asks, and I begin to answer but Ming interjects with, “Dad, you can’t come home for the night – get it into your skull!”

We all sit for awhile in the room with Anthony sad, me guilty and Ming angry, and then we leave and I cry all the way home once again because of how much I may have hurt Anthony with my impatience. And I cry about my dread of the weekend, bringing him home.

Family Friendship

83 Comments »
Jun 28

Please answer the phone!

by jmgoyder

Every day, whether I visit Anthony in the nursing lodge or not (this is now every second day, and I bring him home twice a week for the day), I ring him. If I am not coming into town, I ring him an average of four times – morning, afternoon, early evening and bedtime.

The trouble is he has difficulty answering the phone and often can’t work out what button to press, and sometimes he accidentally locks it. So my method now is to dial his number and let it ring 4 times, hang up, and repeat this several times until he finally answers. This saves the phonebill from skyrocketting, it gives Anthony time to answer the phone, and it drives me insane.

Ming and I spent the morning with Ants today, recharged his phone and put it within reach. Ants said to ring as soon as I got home and I have now been trying to for nearly 3 hours. I know he is in his room, warm and comfortable and watching television, with the phone right next to him on a side-table. I also know he is sad because he will think I haven’t rung him when, in fact, I have tried a zillion times!

Argh!

Family LOVE STORY

45 Comments »
Jun 27

Female pheasants don’t grow on trees!

by jmgoyder

When I wrote my cynical post about platitudes and cliches the other day, I wasn’t actually thinking so much of my own situation with a terminally ill husband, but of other people whose lives seem to have been swallowed whole by such chronic illness that each day becomes an enormous challenge. Some of those people I have met via the blogosphere, but I also know other people personally who are in various stages of illness or grief, so I understand and empathize with how difficult it must be to tolerate the platitudes.

The comments I received on that post confirmed that many people find the platitudes and cliches intolerable, but it was also pointed out to me that cliches can be very useful when you don’t know what else to say, so perhaps the post was a little over-cynical. One off-the-record comment implied that for me to call a well-meaning platitude ‘crap’ was an ugly way of expressing things and that my cynicism didn’t fit with the flavour of the rest of my blog.

So I went back and edited the post to make it gentler, but I kept the original words in there too. At the end I should have added “and you will pick yourself up” but, for some reason, I didn’t because, after all, that is not always possible. But, having upset one person, it is possible I may have upset others for which I apologize.

I have also had to apologize to Phoenix 1 because I still haven’t been able to find him a wife!

Me: Female pheasants don’t grow on trees, Phoenix!

Phoenix 1: I think you have used a remnant of a cliche, Julie.

Me: Oh, crap!

blogging Friendship

49 Comments »
Jun 27

No running

by jmgoyder

Anthony loved to run. He didn’t need a horse or a motorbike to round up cattle and get them from one paddock to another; he just needed his own legs. Sometimes he would get me to help by yelling, “C’mon, Jules, run!” But I could never run as fast as he did, which was a bit embarrassing.

He had the most muscly legs I have ever seen – huge calves, massive thighs – and he always wore those footy shorts, you know the black ones, and he always wore football socks too. So he kind of resembled a football player I guess – big, strong, energetic and, in my eyes (and his own!) perfect.

Sometimes I would just watch him run because it was like watching someone glide through a mirror, or a window; it was like watching magic.

……………………………………

Now Anthony’s legs are bony and often he can’t even walk.

Family Friendship LOVE STORY

34 Comments »
Jun 25

Platitudes and cliches

by jmgoyder

Platitudes make me puke; cliches catch at the corners of my eyes like rogue eyelashes.

Too much crap stuff is repeated, disseminated and shared until it’s like the worn out elastic that actually stinks when you finally pull it out of some old piece of clothing.

For example:

She’ll be right, mate!

Tomorrow is a better day.

Patience is a virtue.

God doesn’t give you any more than you can endure.

The grass is greener.

The grass isn’t always greener.

Chin up!

You will be rewarded in Heaven.

Suffering is good for the soul.

It is better to have loved and lost than never to have loved at all.

The rain in Spain falls mainly on the plain.

Smell the roses.

On the wings of a snow white dove ….

I would much rather read something like this:

Patrick Overton reflects in his poem “Faith”:

When you come to the edge of all the light you have

And take the first step into the darkness of the unknown,

You must believe one of two things will happen:

There will be something solid for you to stand upon,

or you will be taught how to fly.

The only thing he forgot to mention was that there is actually a third possibility:

You will might fall.

Family Friendship LOVE STORY Wings

61 Comments »
Jun 24

Coconut oil

by jmgoyder

Thanks to Anthony’s beautiful niece, Jen, for this link.

http://www.youtube.com/watch_popup?v=ZZOR-Qd3QSg

I hope it helps. If you care for anybody with any kind of dementia, this could work!

Family Friendship

16 Comments »
Jun 24

‘Paradoxical kinesis’

by jmgoyder

Over the last couple of years as Anthony’s Parkinson’s got worse I would be amazed at how, when anyone visited, he would suddenly transform from being slumped and silent into a walking, talking marvel. As soon as the visitors left, he would revert back to being unable to walk etc. which annoyed me intensely because it was as if everyone else was getting the ‘same old Anthony’ and Son and I were getting the ‘leftovers’. I also found it frustrating because visitors would inevitably say to me, “Oh he’s so much better than I though he’d be.” In other words I felt I was being perceived as a liar or, at least, an exaggerator.

Assuming it was some sort of adrenaline rush, I once asked one of Anthony’s doctors about this (oh yes and Anthony would always ‘perform’ very well for them too). This doctor told me the famous story of a nursing home fire where the Parkinson’s patients, all wheelchair bound, were trapped on the third floor. As this was being reported by nursing staff to firefighters, someone noticed that all of these patients were standing outside the building, staring up at the fire. They had all run down the stairs and escaped! The doctor said that this phenomenon had been termed ‘paradoxical kinesis’, where the faulty brain suddenly does a kind of U-turn.

I’m no scientist so I don’t know, but, with Anthony, it seems to be triggered by a kind of fear – almost like a performance panic that works in his favour. With people he sees a lot of and is comfortable with it doesn’t happen, but with people he hasn’t seen for awhile, or for any professionals (doctors who visit him in the nursing lodge, for instance), he rises to the occasion with great skill and ease.

When he was living here at home, he would sleep for hours after a bout of paradoxical kinesis and yet our visitors would go home thinking he was fine and dandy. Mmmmm!

Family Friendship LOVE STORY

47 Comments »
Jun 23

Unbearable

by jmgoyder

I keep trying to keep trying to keep trying – to be funny, to be positive and all that – but sometimes there is just no point in trying to keep trying when it’s all downhill anyway.

Parkinson’s disease is an absolute shit of a disease; it sucks all of the joy out so that the laughing stuff is knifey, cynical, brave but hopeless.

When I went to pick Anthony up today, I hoisted him up off his chair but then somehow lost him and he slid to the ground. I had to get a nurse to help me pick him up and for the rest of the day (we went to my mother’s for lunch) he kept saying I made him fall in a half-jokey way – barbed wire.

By the time we’d had lunch at my ma’s, seen Arthur, and gone back to Anthony’s nursing lodge, I was ready to fight someone, anyone, but there was nobody to fight. So I just drove home to the farm, thinking about my conversation with Anthony in which I said, “I haven’t abandoned you – you have abandoned me!”

Apparently you are not supposed to ask why? You are supposed to ask what? Well, as far as I’m concerned, the what can get over itself because it is the why that makes my heart beat so thunderously.

Why does this Anthony, pictured only 18 months ago, not resemble the Anthony I see now? Why?

Unbearable.

Family LOVE STORY Wings

68 Comments »
Jun 19

A better life?

by jmgoyder

Today has been eventful.

A lovely place has been found for Arthur (see previous post) and he will be leaving in a day or so. Ming (Son) has told him the hut is no longer safe and we have to have it inspected for wiring (which we do).

One of the guinnea fowl was cowering in the corner of the emus’ lean-to, so Ming helped her get out. I think she wants somewhere safe to lay eggs, so here we go again!

Ming and I went out for lunch despite suffering from gastro. We had to go because it was a promise we made yesterday when we had our long discussion. I had chilli prawns and now feel amazingly better!

Anthony got angry on the phone this morning (first time ever) and said he was hurt (first time ever) that he couldn’t come home for the night so I have arranged to pick him up for the day tomorrow. His uncharacteristic upsetness has cast a shadow on today, but tomorrow will be better.

I have nearly caught up with the washing and folding of clothes.

Ming is a happy chappy.

I am too but I seem to have this spare water balloon full of tears that keeps landing in front of me, making me afraid to smile, or take the next step.

Ming said he read the post about him on Facebook and hated it but then he grinned.

One of my two PhD students has finished and submitted his thesis.

Anthony just asked me on the phone (I ring him several times a day when I can’t get in to see him) if I still loved him and I said yes.

During lunch, Ming said we were not to talk about Anthony so we didn’t.

The ute is making a funny sound.

I had a dream last night that I was having an argument with someone and a hippopotamus squashed her.

The main car’s side mirrors are smashed and I still haven’t rung the insurance company.

Nearly all of the young peacocks now have long feathers.

Wild galahs and 28s are everywhere.

There is a rat in the washhouse which only Ming has seen, so I need his company to do the washing.

I have a mother who is a best friend.

The electricity has not gone off now for a couple of days.

I have resigned from my job at the university.

I will never, ever wish for a different life.

I will never, ever wish for a better life.

This is a better life – this is the best life.

Animal Family Friendship Wings

47 Comments »
Jun 17

Birthday boy – Baz!

by jmgoyder

Today was Anthony’s best friend’s 50th so I went into the nursing lodge and picked Anthony up to bring him to the party early, before the throng arrived, so that we could have a quiet drink with Barry (Baz).

A lot of things went wrong:

  • Anthony couldn’t walk from the car to the chair to sit down and Barry and I took awhile to get him seated;
  • Anthony started shaking and shivering immediately, so Baz gave him a red wine to help and that seemed to work;
  • Anthony had to be back at the nursing lodge by 6pm at the latest, for his pills and for dinner;
  • It took a couple of people to get Anthony back into the car to go back, by which time I was openly crying which was embarrassing;
  • Anthony squeezed my knee as I  pulled out of Baz’s driveway, but I was so distressed and disconcerted that I banged into the fence on the left, and then on the right;
  • I got Anthony back to the nursing lodge in time and went back to the party to make sure I hadn’t damaged Barry’s fences (I hadn’t – phew!)

A lot of things went right:

  • Baz liked his birthday present;
  • Ants and Baz were happy to see each other;
  • Baz’s wife, Julie, and I had a huge, wondrous, hug, as Anthony and I were leaving;
  • I have now realized that Barry’s birthday party will be the last one Anthony ever goes to.

Happy birthday Barry, and I wish so much that Anthony could have been there properly – not like this sick, old man, but like the life of the party he used to be – oh well!

Animal Family Friendship LOVE STORY

42 Comments »
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