jmgoyder

wings and things

Moments

Today, as I fed Anthony his lunch, he took my hot hand into his cold hand, and kissed it over and over again until I laughed hysterically.

Anthony: Shhhhh! You are so loud!
Me: I was always softly spoken until I met you!
Anthony: Shhhhh!
Me: Are you ready for your next mouthful? OMG you are like a starving dog!
Anthony: I’m hungry.

Anyway, after I fed him his lunch (he seems to have forgotten how to use cutlery – normal in cases of PDD) I got my mother’s amazing Christmas cake out of the cupboard and he pretty much vacuumed it all up!

Lately I have become a bit haphazard with visiting Ants. For example, when he is in sleep-mode, I don’t stay very long; but if he is in wide-awake mode, I stay. It’s a kind of loose arrangement whereby I try to spend at least a few hours per day with him. I should probably turn this into a more regular, regulated routine, but, since I stopped working at the university (and that is a few years ago now), I have lost any sense of daily routine. I suppose I have just been kind of going with the unpredictable flow of Anthony’s PDD.

When I take a day off from seeing Ants, I simply summon Ming or Meg to do so.

Almost every time I enter Anthony’s room, he looks at me and says: “How did you find me?”

Almost every time I leave Anthony’s room, he asks: “You won’t forget where I am?”

This afternoon, he whispered something a bit more poignant: “Jules, don’t forget about me” and I reassured him, of course!

His verbal antics aren’t so acrobatic anymore; his sarcasm is subdued, but the way Anthony stares at photos of Ming and me and him – especially the ones in which Ants is still healthy, I am young, and Ming is a little child – are particularly moving.

Now that Ming has converted a couple of videos into dvds (of wedding and baby Ming), I can see clearly how this nearly 40-year-old relationship has impacted on all of us in various ways.

And this is probably the moment in which I begin to cry (unless I find a good movie).

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Anthony’s hilarious sarcasm!

Yesterday, when my mother visited us at the nursing home, she asked me how one of her friends was; her friend is in the dementia cottage where I worked for awhile last year. So I said, “Let’s go and visit her!” So we did. I love going there to see the wonderful women (residents and staff).

I told Ants we’d be back soon as the dementia cottage is just around the corner from where he is – in the high care section.

ME: Ants, we’re just going to visit some of the neighbours.
ANTHONY: What about me?
ME: I’ll be back really soon, okay. You stay here.
ANTHONY: I suppose I’ll see you in two or three weeks then.

He has a gift for sarcasm – always has!

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Bright eyes!

I feel compelled to record these updates on Anthony’s health, so that I will remember in the future. The unpredictability of his daily condition is just that – unpredictable. After days of silence and sleepiness, today his eyes were wide open (one of the many symptoms of PD is not blinking, so this makes his eyes very wide!)

Me: You look like an owl!
Anthony: I …
Me: Clear your throat – c’mon, cough!
Anthony: Coughing.
Me: So what did you want to say?
Anthony: Where is your mother?

Okay, so a little background information for those who don’t know. My mother is 81 and fighting fit despite numerous health challenges (cancer, broken hip, pelvis, wrist). She lives independently in a town not far from here and she is the epitome of maternal/grand-maternal etc.

The fact that she visits Ants so often – around twice each week and more if I need a break – is testament to her amazing love for me, her only daughter.

Today, she and I joked with Ants, and his eyes lit up several times, with mirth and affection and, of course, confusion.

Thanks, Mama!

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Once upon a time 4

The young woman was employed as a ‘nanny’ to two angelic-looking monsters, aged 2 and 3. She had thought her London job would be somehow exotic but, instead, she found herself dealing with a young, professional couple of parents who, despite having produced two children, didn’t have a clue what to do with them. The mother’s passionate advice to the nanny was “Don’t ever use the word ‘no’. I don’t want them to know about ‘no'”. The father, on coming home from work to find his two boys climbing the ceilings with an abundance of no ‘no’ energy, would weep freely into the reluctant shoulder of the nanny.

You would think, wouldn’t you, that this situation would distract the young woman from her love for the dairy farmer. Instead, it had the opposite affect and she became intensely homesick for Australia, for her mother and brothers, for the dairy farmer (of course!) and for the dairy farmer’s brother’s family.

That Christmas, the dairy farmer’s tall, shy sister-in-law decided to leave a cassette tape recorder on so that the young woman/nanny could share, in retrospect, the buzz of that day. When the young woman/nanny received this tape recording she was in the midst of preventing and/or throwing the angelic looking monsters out of her attic window. But when she pressed ‘play’ it all changed, as she and her two charges listened intently to the voices of gleeful children opening presents, messages from each of the white-haired children, the kindness in the tall, shy woman’s voice, the gruff affection in her husband’s. And then there was his voice – just four words: “Hi Jules, happy Christmas!”

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Auto/biographical risks

I was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.

The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.

By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.

Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.

When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.

My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.

I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:

EJ: This is far too painful, dear. Rewrite it.

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Dilemma delights

The other day, one of Anthony’s nephews and his wife visited us at the nursing home. We figured out that we probably hadn’t seen each other since Ants’ 75th. My mother also happened to be there, and Ming arrived soon after because he wanted to re-meet one of his many cousins.

As soon as this nephew entered the room, he sat right next to Anthony, shook his hand, made eye contact, and exclaimed, “Uncle Ants!” then reminisced about when they had been children. He talked directly TO Anthony and, even though Ants wasn’t very vocal, he was responsive and he easily recognised this lovely couple.

It was a wonderful hour or two and, as I was walking the nephew and his wife out to their car, she admitted to me that she’d been a bit nervous, had wanted to remember Anthony as he was, but now felt reassured about how he IS.

The next day, I reminded Anthony of this visit, and his three-syllable, whispered response was “DELIGHTFUL”.

Okay, so that should be the punchline, but it isn’t. What I have learned from this visit, and from the frequent visits of other relatives and friends, is that speaking TO Anthony, no matter how unresponsive he seems, is vital.

It is unavoidable, of course, that, in a situation like this, we will also speak ABOUT him in front of him and I always find this TO-versus-ABOUT very difficult. It feels a bit disloyal to me; that weird scenario between being with the person who is being spoken to versus the scenario in which the person is being spoken about.

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Once upon a time 3

At some point in time (I think she was 22) the young woman decided to put some geographical distance between the dairy farmer and herself.

Ironically, it was he who picked her up from her mother’s house, and drove her to the airport. She had dressed up and put make-up on; the photograph her mother took shows a very handsome couple with too-wide smiles.

In the plane, on the way to London, the young woman tried over and over and over again to drop her burden of love into the various oceans, islands, and even into the black of night. But it was such a massive bubble, this wonderful love, that it lost its footing during a particularly difficult gravity experiment.

It (the love thing) floated easily up into the sky-clouds and had a bit of a rest.

The dairy farmer drove back from the airport to the farm.
The young woman began her ‘nanny’ job in London.

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Vacuuming

On the eve of Ming’s 22nd birthday I asked him to vacuum the house.

I had already given him a pre-birthday present of some money, but told him that he would only get the rest if he vacuumed the house.

He grinned, pointed out that the vacuum cleaner needed a new bag, asked me if I remembered how to change the bag, then tested my memory of how to change the bag. I have no idea why I have a reluctance to change the bag; Ants always did that, then Ming. But, in my defence, I am the one who does most of the vacuuming.

Well, having passed the ‘change-the-vacuum-bag’ examination, Ming dismissed me to my newly air-conditioned writing room/office, still grinning (him, not me) and I waited with bated breath for the sound of the vacuum.

I didn’t expect the sound to be so loud. Anthony was always a quiet, careful, gentle vacuumer; he didn’t want to upset the skirting boards. Ming, on the other hand, is a rather violent vacuumer. The BANG AND CRASH sounds were a little alarming so I decided to stay put in the hope that he would forget about this room where I was hiding under my desk.

Finally the sounds of mad vacuuming ceased. The silence was so abrupt that I wondered if the vacuum cleaner was all right. After a little bit more silence I realised that I should have been wondering about Ming.

I emerged from underneath my desk just as Ming entered my writing room. A great big grinning presence.

Ming: Well, I’ve cleaned your house!
Me: OMG that is exactly what Ants said after vacuuming! Every time he did anything domestic, he would make it known that he had done if for me, and I would argue that it was also his house.

I can’t wait to tell this story to Ants tomorrow. I know he will remember his obsession with vacuuming and Electrolux. And I know he will smile at Ming’s vacuuming efforts.

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Editing out the anger

I went back to yesterday’s post and edited out the anger by admitting to it. It doesn’t even feel like anger anymore; it feels more like terror. The power of suggestion I guess, phone-calls from various family members worried that Ants was near death; the idea insinuating itself into my psyche, drippling in – rusty tears from a leaking tap.

“He is fine!” said over and over and over again until my own voice has become the echo of Anthony’s whisper.

As I was leaving the nursing home the other afternoon, I had a brief conversation with a nurse:

Me: He’s really out of it today!
Nurse: Yes, he’s been sleeping a lot.
Me: Do you think … is he going to die soon?
Nurse: No, he’s just getting older.
Me: I get a bit scared sometimes.

Editing out the anger, facing the terror of losing him, then getting back to the normality of sitting next to him, my hand on his shoulder, watching television, waiting for him to wake up and smile at me.

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Whispers

Anthony’s voice has become so soft, he is hardly audible now. How did this happen so fast? One minute I am jotting down his brilliantly cryptic phrases, and the next he is unable to utter a single word.

Parkinson’s disease (in all its variations) has such a conglomeration of symptoms, the tremor symptom being just one, that it took years to figure out what the hell was wrong with Anthony. Understandably, perhaps, I just thought he was getting old really fast.

As Ming grew from baby to child to teenager, Anthony’s usually loud voice gradually lost its point, its force, its boom.

So, from now on, I will be listening to his whispers more intently than usual. He will have to check with me re the placement of every single comma!

The recent rumour that Ants was near death absolutely infuriated me!

Whispers….

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