Parkinson’s disease | jmgoyder

Hope

by jmgoyder

In the morning, Ming and I are going into town to an appointment with someone who will help us to cope with each other, the farm and Anthony’s deterioration.

I told Ants about this appointment when I saw him this afternoon with my red wine and he wanted to come along too but I said I couldn’t take him as it was too early in the morning etc. etc. and then I finally admitted to him that Ming’s anger would only be exacerbated if Ants were present.

“So he hates me then,” Anthony said, spilling his wine.

“No, Ants, he hates both of us at the moment,” I said.

“But why?”

“Because you are so sick and I am so sad.”

“Okay – just come here afterwards.”

And we will.

Family Friendship LOVE STORY

52 Comments »

Love story 103 – Red wine relief!

by jmgoyder

Success!

Finally, one of my ideas worked!

I took a bottle of red wine into the nursing lodge and shared a sip with Anthony before dinner and it was GREAT!

Yeeha!

Family LOVE STORY

41 Comments »

Love story 102 – Rooster routines

by jmgoyder

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!

Family LOVE STORY Wings

37 Comments »

Love story 101 – “Where am I?”

by jmgoyder

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.

Family LOVE STORY

49 Comments »

Little licks of laughter and love

by jmgoyder

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.

Family Friendship LOVE STORY

38 Comments »

Nightmares

by jmgoyder

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.

Family Wings

27 Comments »

Do you ever trash your own blog posts?

by jmgoyder

I just trashed a rather sarcastic post I wrote yesterday because when we saw the skin cancer surgeon today I felt a little abashed. You see, I had wanted him to go see Ants in the nursing lodge, make a judgement about the skin cancer and schedule the operation; after all, his rooms are only a few streets away from the nursing lodge. Instead, Ming and I drove into town, picked up Ants, took him to the appointment and then back to the nursing lodge. Ants was fairly mobile so it wasn’t too much of an ordeal but I get very nervous taking him anywhere now due to various offshoots of Parkinson’s Disease that can happen suddenly.

This surgeon has operated on various of Anthony’s skin cancers before but not for several years. He is rather delightfully eccentric and so is his wife, who manages the practice, but I am a little uneasy with them because we had a bit of a red tape kerfuffle years ago and I got a bit cross. This time I decided to be polite and accepting of the red tape because the system requires it and perhaps my previous sarcasm should have been directed at the system? Or maybe I have a teensy anger problem at the moment, as does Mingy.

The internet is an interesting space in all its complexity but, due to the lack of censorship, it can also be a place of extreme havoc and a space in which the weaving of hate is possible. This happens on Facebook, on WordPress and on all sorts of websites. Sometimes I write something that I might not actually say; this is cathartic but also maybe a bit cowardly. For example, I wrote about my BNDN (Best Next-Door-Neighbour) yesterday more effusively than I actually spoke to her. Conversely, I have written to, and about, the unkind people in my/our life because if I tried to say these things, the door would be slammed or the phone hung up.

A beautiful relative tried to censor my blog a few times until I told her off because self-censorship is my speciality. I guess that’s the trouble with having friends and family reading your blog. You have to be so bloody careful what you say. One blog friend told me that none of her family or friends know about her blog and I think she was very wise! When I taught Creative Writing at the university I would always devote a lecture to the self-censorship conundrum because it is such a huge dilemma when you want to write something but you are scared someone will disapprove. I used to say, “Just pretend your parents aren’t looking over your shoulder. Write bile, write rage, write blood – write passion!” It seemed to work but it had its drawbacks because when it came assessing those assignments, it was like being hit by lightning in good and bad ways.

I am sometimes too honest for my own good and this week my anger has leaked into my posts because I didn’t know what else to do with it. That’s okay and I am fine with that. Nevertheless I did feel a little lighter trashing that post. Does anyone else do this?

blogging

51 Comments »

“How is Anthony?”

by jmgoyder

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.

Animal Family Friendship

44 Comments »

MAGIC!

by jmgoyder

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!