jmgoyder

wings and things

Love story 102 – Rooster routines

This Anthonyless house has become a place of procrastination and rage and lassitude. The garden is overgrown, the house needs a sweep, the washing keeps getting rained on, and the meals don’t happen.

This Anthonyless house has lost its routine because he is no longer living here and motivating us to keep up. In very different ways, Ming and I are both in that limboland of depressed energy – he rages and I cry and, no matter how many times we climb up into the sunlight, we keep falling back down into the pit again.

Today, I was going to cook Ming a breakfast of bacon, eggs and tomatoes but, instead, I slept in.

Today, Ming was going to mow the lawns but, instead, he is playing his guitar and watching a movie in his room.

Today, I was going to visit Anthony in the nursing lodge at 11am but I’m not going in until 4pm now because  …

EPIPHANY!

If I go in at 4pm with a bottle of red wine, I can emulate what we used to do every afternoon at 5pm at home; we would routinely have a pre-dinner drink. Yes! It has to be 4pm because in the nursing lodge dinner is at 5pm; there is a routine! So, if Ants and I have a drink together and a few olives at 4pm maybe he won’t get this confusion thing later in the evening after I’ve gone home. I could make this a regular routine thing that we both could look forward to!

Perhaps, if this is a regular routine, things will improve emotionally for all three of us? I don’t know. Some of my other haphazard ideas have gone to the wall – showing him my blog didn’t work, wheelchair-taxi rides home didn’t work, taking paperwork in to do with him didn’t work etc. etc.

It wouldn’t have to be every day. I haven’t been able to get in every day anyway, so it could be every second day. I could work this around picking up Ming from music school and his cow-milking schedule somehow. Yes!

I have to give the credit for this routine epiphany to Malay, our biggest and most regular cockadoodledooer! He says that routine is vitally important in terms of organizing the day.

Malay: I crow at 4am and 4pm on the dot. It keeps me sane.

Me: Okay, so how do you know what the time is?

Malay: Julie, I am a rooster!

Me: Oh sorry.

Malay: When you go in this afternoon, I will be crowing for you and Anthony. After all, you both raised me from a chick.

Me: Thanks, Malay.

This Anthonyless house is full to the brim with Anthony – roll on 4pm!

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Love story 101 – “Where am I?”

Parkinson’s Disease is different for every single person who has it. Its many and varied forms, and its hour-to-hour unpredictability, is maddening for both sufferer and carer.

Last night, at around 6pm, I received a phonecall from a nurse from the nursing lodge where Anthony now lives and she told me he wanted to talk to me. I was a bit alarmed that they had rung me. Once he was on the phone I could hear the dreadful fear of confusion in his voice and I kept reiterating that he was safe and at the lodge. But he kept saying he wasn’t there, he was somewhere else and wanted to come home. Luckily the nurse stuck around and she and I both reassured him.

Tonight I made my usual 7pm phonecall to say goodnight and Anthony was once again disorientated and not sure where he was so I said I would hang up and ring the nurses to tell them he was confused again. Anthony said,, “Jules, don’t tell them I’m crazy!” Anyway, it all worked out with a nurse by his side when I rang him back, but he still didn’t quite know where he was.

My love for him has become like blood; every time he bleeds, so do I. We had such a beautiful, turbulent, fantastic love and now it whimpers or howls – unbearable.

I will go in at my usual time of 11am tomorrow but first I have to swallow this horrible sorrow, put a grin on my face and buy chocolates.

Parkinson’s Disease is different for every single person who has it. Its many and varied forms,and its hour-to-hour unpredictability, is maddening for both sufferer and carer.

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Payback

It was the Mother’s Day morning tea at kindy. I’d never been to one, so I wasn’t sure what to expect.

All I knew was that Ming was excited about a “poortrit” he’d done of me. “It’s deesplayed,” he said, twinkly-eyed.

Well, five-year-olds are always twinkly, aren’t they? Never devious, surely. Or so I thought.

The day arrived and I wandered through the classroom, searching the walls for an image of myself. Having given me a general tour of the room, Ming had abandoned me to go and play.

We were all given a cup of tea and asked to sit down while the children passed around plates of scones, cake, timtams and twisties.

Once everyone was comfortable, the kids were summoned to sing their Mother’s Day song. By then I’d found Dillan’s and Danny’s mothers and we all got a bit choked up when those twelve five-year-olds sang the last line – “Mum, you aaaarrrre the best.”

Once the performance was over, we were then allowed to roam free once again. Mrs Segal told us all to take special notice of the wonderful portraits drawn by the children.

“Have you found yours yet?” Danny’s mum, Heidi, asked me, grinning strangely.

“It’s a real winner, Julie,” said Dillan’s mother, Sandra, giggling.

“No, I haven’t found it. Ming never stops drawing – he’s become very accurate,” I said, pleased they were impressed.

“Oh, it’s definitely very good,” said Heidi, with what seemed decidedly like a smirk.

“It might not be quite accurate though,” said Sandra.

Were they being sarcastic about my little Picasso? How dare they! But all I managed was a defensive, “Oh, well, he’s really keen, he’s trying hard. Maybe he just didn’t get exactly what he was supposed to do.”

Their laugher still echoes.

Heidi and Sandra took me by each arm and led me back to the portrait wall. Suddenly, several of Ming’s friends surrounded me. One of them whispered to me, “It’s the next one, Mrs Goyder,” then ran off, laughing. I looked around to find Ming behind me, pointing and smiling proudly, but somewhat sheepishly.

I looked back at the drawings, still unable to find me, until Dillan grabbed my hand and took me directly to Ming’s ‘Mum’ portrait.

The shock of it! The freckles were exaggerated, but I put that down to the Ming’s artistic immaturity. The slash of red lipstick was crookedly accurate though.

It was the thick, arrow-like eyebrows that struck me most. They were like backwards ticks. I’d seen Ming do this a thousand times when he was drawing his monsters.

That evening I tactfully complimented Ming on his superb portrait. “You made me look extremely cross,” I mentioned, pretending to be light-hearted.

“You got cross with me.”

“When?”

“When I was ownee two – with the pillow.”

“That was ages ago!” I couldn’t believe he was bringing up the incident when I had banged my head against the wall and told him to put the stuffing back into the pillow.

“Payback,” he said smugly.

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A gaggle and a giggle

With my cousin from Sydney the other day. She and her beautiful daughter have now gone back home.

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Little licks of laughter and love

When Ming was a baby I used to call him ‘my little beautiful’. I would accompany this with tickling so that whenever I said ‘my little beautiful’  he would giggle and gurgle with the delight of anticipation.

I love laughing. I LOVE LAUGHING! Lately, though, there hasn’t been much to laugh about so my thirsty sense of humour seems to be grasping at the tiniest little things and latching onto them. Yesterday, for example, Ming and I were in a shop choosing birthday gifts for three of his friends – one girl and two guys. Ming had decided to buy perfume for the girl and cologne for the guys so we were examining the contents of the locked glass cabinet when he pointed to a tester bottle (you know, so you can test if you like it or not by spraying it on yourself). He said, ‘That looks like a good brand, Mum – Tester.’

I looked at him, thinking he was joking, but his expression was serious. ‘That’s a tester, Ming.’

‘Oh, do you know it?’

‘It’s a tester – it’s not a brand.’ By then I was nearly hysterical with laughter and Ming was blushing as the shop assistant opened the cabinet.

This incident keeps leaping, unbidden, back into my mind and making me laugh all over again.

A bit later  on in the day, we met my mother and our visiting cousins at a restaurant overlooking a bay. As my mother and I stood at the counter ordering our food, she said the strangest thing to me. She said, “Where’s the water?” I pointed to the bay so she headed back to the cousins and Ming who were seated almost on top of the bay. I wondered if perhaps my mother might be losing the plot. Once I was again seated at our table, she asked me again and I suddenly realized she meant drinking water. Again, I became nearly hysterical with laughter; we all did.

I guess you had to be there!

Then, last night, when I rang Anthony at the nursing lodge to say goodnight and he said, ‘Hello, my beautiful,’ and my heart grinned.

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Nightmares

Last night I had one of my adventure nightmares. We were all in a big ship – Ants, Ming and me – on the way from London to Paris.

Inside my dream I recognized the fact that (a) we don’t live in London and (b) Paris is too far away.

We all boarded the ship – Ants, Ming and me – but then I remembered that I  had forgotten Anthony’s pills and my wallet, so I asked the ship’s captain to wait a minute and he said yes.

But when I got back to the dock the ship had gone; it was way out in the ocean and I stood on the edge of the dark water, helpless and frantic, with Anthony’s pills in my hands and a hamburger for Mingy.

I was too late and they were gone.

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Michael Terren – my great nephew

He launched his CD yesterday but we couldn’t get to Perth. I am so proud and honoured that Michael did some of his work here at Bythorne.

http://soundcloud.com/flaming-pines/cureakling-michael-terren-out

I will try to provide better links once I figure the sound thing out. Luckily Michael is an understanding musician!

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“How is Anthony?”

I am home after a day with cousins and Anthony and our next-door-neighbour drops in with a freshly cooked meal. I am gobsmacked at her kindness. She doesn’t ask about Anthony because she already knows and cares more than any neighbour I have ever had. Every morsel of her meal is a gift.

I am at the local shop getting milk and bread etc. and I am trying to be flippily quick but the woman serving me catches me eye’s heart and asks, “How is Anthony?” And I dissolve into tears in the middle of the shop, and she hugs me across the counter and, beyond embarrassed, I hug her back. She doesn’t even know Anthony but she must see him in my clumsy stance, inside my bones; it’s probably the limp I’ve developed to counteract the impotence of my sorrow.

How is Anthony?

Not good.

I am helping the wheelchair taxi driver to get Anthony into the taxi and he is sullen and sad and I am bereft and all of a sudden his brother turns up unannounced and shakes Anthony’s hand as if everything is normal – as if this is normal. As the taxi drives off, this brother says, “He looks well, doesn’t he.”

A lot of people say that these days, and these words are either inane, naive or just plain stupid.

How is Anthony?

Not good.

I am home after a day with cousins and Anthony and our neighbour drops in with a freshly cooked meal. I am gobsmacked at her kindness. She doesn’t ask about Anthony because she already knows and cares more than any next-door-neighbour I have ever had. Every morsel of her meal is a gift.

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MAGIC!

Yesterday was a magical day. My cousin and her daughter are visiting from Sydney and staying with my mother so they all came over with lunch. I haven’t seen my cousin for 15 years and it was wonderful! Ming and my cousin’s daughter are the same age and already friends on FB but there’s nothing like face to face. My mother made the lunch and served everyone which gave me more time with the cousins . It was fantastic and I am still tasting the joy of yesterday and looking forward to seeing them again tomorrow before they go back.

After lunch my mother took them to a magical little corner of our countryside called Gnomesville. I stayed home with Ants.

I had had Anthony wheelchair- taxied home for the event but he was mostly withdrawn and became sullen when he had to go back which always upsets me no matter how much I steel myself for it. His withdrawal isn’t intentional; it’s because he can’t focus on more than one thing at a time, so five people conversing excitedly is impossible. I remember when he was being assessed by a Parkinson’s Disease specialist in a Perth hospital, a kind lady who also had PD, befriended Ants and told him about this inability to focus on more than one thing and both Anthony and I realized how true this was for him too. For me it explained why he had become so silent and for him it was reassuring to know he wasn’t the only one to be confused by crowded conversations.

He is getting more and more shark-eyed. You can kind of see it in the photo below which is from ages ago. Now his eyes are often half closed and he looks at me with what seems an expression of malevolence but is really him trying to focus cognitively (well that’s what I think anyway!) He doesn’t know he’s doing it. Ming, on the other hand, appears to know exactly what he is doing with his eyes in an expression of unadulterated sarcasm! The only resemblance between these two sets of eyes is that they are blue.

[Oh, see that little spot next to Anthony’s left eye? That is now the massive skin cancer I was talking about the other day and, yeeha, we finally have an appointment with the surgeon tomorrow morning!]

Speaking of blue eyes, my photos of Woodroffe’s and Ola’s blue eyes yesterday intrigued a few people one of whom was Susan at http://susandanielseden.wordpress.com/

She is a talented poet and I can’t always keep up with her blog because she is so prolific. I suggested she might write a poem to go with the blue-eyed geese and within what seemed like minutes, she wrote this:

blue topaz eyes
chipped ice set in softness–
unexpected jewels

MAGIC!

So I decided to try and find a few more photos of the blue eyes!

And then I found this one. I had forgotten that the geese have an ability to change their eye colour if prompted.

MAGIC!

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Apology

I decided to edit out the following sentence from my ‘rage’ post of yesterday: “Of course none of those professionals really care, do they.”

That was a dreadful overgeneralization for which I apologize.  The focus of my rage was on the doctor who did not return my calls for three weeks and who took just as long to even refer Anthony to the surgeon.

Now Anthony is on the urgent list for cancellations. It’s a public holiday today so tomorrow I will ring the surgeon’s office and ask if there are any cancellations and then I will just keep ringing until it happens.

I  will not panic. It is not an emergency so the hospital idea is out.

Most of the professionals who have looked after Anthony, and continue to look after him, are wonderful, caring people.

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