jmgoyder

wings and things

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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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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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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Death-defying

Anthony has lived, breathed and survived so many diseases now that it is gobsmacking that he is still alive and (almost) pain-free. He is like some sort of super-hero in the ‘high care’ section of the nursing home, and very popular with the staff because, after nearly four years there, he still has a twinkle in his eye.

Of course, sometimes he seems semi-comatose; other times, he is alert. It’s the same with verbal cognition: sometimes he is unable even to say a single word; other times he is vociferous. I haven’t seen him walk for awhile, but maybe he does that in the morning and I usually get there at lunch-time or in the afternoon.

Most of Anthony’s regular visitors – me, my fantastic mother, Ming, friends, family, and volunteers – actually speak to him, reminisce with him and this is wonderful. And the staff are fantastically interactive with him to the point of flirtatiousness. Be careful, girls – he is mine!

The rumour, spread by a family member, that Ants was near death, was disturbing to say the least, but, once I rang him, he admitted his mistake. It didn’t seem to occur to him that his rumour might have upset Ming and me.

This morning, I received a phone-call from a neighbour who hadn’t seen Ants for awhile and he was shocked at Anthony’s confusion and appearance. I reassured him that Ants was always a bit dishevelled in the morning. Later on today, my mother rang me to say she was with Ants and she gave me her phone so I could speak to him.

Anthony: Where are you?
Me: Ming and I are fixing a fence.
Anthony: At Bythorne?
Me: Yes.

Please don’t die, Ants. Not yet.

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Peacock poop

I thought it was time for a light-hearted post so here goes.

Every morning I am woken up by a bang-crash sound from the back of the house. King Ken has never done this before but he is now attacking his reflection in the back veranda windows on a regular basis. He does this so ferociously that I’m a bit nervous he will actually break a window.

Here he is pretending innocence.

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Now, apart from the alarming regularity of this banging and crashing, King Ken’s obsession with his own reflection also means that there is more than the usual amount of peacock poop waiting for me every morning outside the back door. Obviously I have to wait for this to dry before I can sweep it away because my new straw broom (which I can’t find anyway) doesn’t take kindly to wet peacock poop.

I like to tell Anthony about these mini-adventures and show him photos, but his verbal responses are now becoming few and far between. Our friend, N, another resident in the high care section, is also becoming less vocal although she still possesses a wonderful ability to laugh loudly. N’s daughter and I have become friends via our mutual concern for each other and our two loved ones.

Yesterday Ants couldn’t get any words out at all, no matter how much he tried, so I began to “interpret” what he was trying to say by suggesting possible topics from recent conversations. I didn’t always get it right but, when I did, he would sigh with relief (or maybe resignation) and give me a small smile. He was very sleepy and silent but not sad; he is never sad and this amazes me! I have never known anyone to be this resilient and content and this is a gift to me now because he has always had a rather calmingly buoyant effect on me.

I love metaphors and I was thinking that King Ken’s bang/crash might represent what used to be Anthony’s very healthy ego (still intact). But maybe King’s antics represent me versus the brick wall of acceptance.

As for the peacock poop, or any poop for that matter, it is its own metaphor and I just need to find my straw broom!

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Photographs with Anthony

Yesterday, two of Anthony’s nieces visited us at the nursing home.

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It’s only lately that I have realised how important it is to take photos of Anthony with the various friends and relatives who visit. I’m astounded that I haven’t taken more photos of Ants with Ming, with my mother (who often visits him on my behalf), the regular visitors, occasional visitors, the wonderful carers!

My reluctance to take photos is partly to do with people’s privacy; partly to do with savouring the moments rather than trying to capture them on camera; but mostly because I don’t want to post photos of Anthony that are unflattering. After all, he was always rather vain about his appearance. When I showed him the photo I posted a couple of days ago (of him and me), he remarked, “Who is the old idiot?”

If it weren’t for the nieces yesterday, I would never have realised how important these photographs are. I will now coerce the staff to take heaps and heaps of photos of us! My camera is on charge.

Today, I stayed home for a break, and my amazing mother visited Ants and rang me from his room.

Meg: Here he is, darling.
Me: Ants?
Anthony: Hi Jules.
Me: What do you want for tea?
Anthony: Some hot, hot …
Me: Pies?
Anthony: Not ….
Me: What about crayfish or prawns?
Anthony: Save for tomorrow.
Meg: He is fine, darling. Are you?
Me: Yes and thank you, Mama!

Of course the above is a compressed version of a dialogue filled with pauses, and impossible to capture via photography.

But I have decided to ask the various staff members who have become my friends to take photos of Anthony and me.

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Sigh of relief

I have mentioned Dina before (my decluttering friend) and, more recently, Dan (my vegetable garden artist). Well, yesterday they both happened to be here at the same time. Dina was here in the house with me, helping me with a huge pile of filing, and Dan was outside, replenishing the crop of vegetables that had been eaten by rabbits.

The other people who were here were the guys (Eric and Aaron) who I’d employed to rabbit-proof the fence around the vegetable garden and they are doing a marvellous job! I think you have to be Australian to realise what a curse to crops rabbits are. Anyway these guys have dug trenches deep enough to put steel mesh underneath the ground to stop the scoundrels from getting in and eating my carrots etc.

The ‘sigh of relief’ title of this post is just to do with knowing that these are people I can call on, professionally and, sometimes, personally.

And Chris, my computer guru, has helped me solve my cursor acrobatics since getting the new modem – sigh. I have, once again, found it impossible (except via phone) to access the internet.

Dina visited Anthony the other day and helped him with his lunch. He asked for me but she explained that she was there instead of me (this is what my mother does. Then he said to her, as if he were in a restaurant,

“This is only the second time I have been here.”

When Dina told me this I had such a sad chuckle because Anthony has now been in the nursing home for nearly four years.

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3am

Sometimes I get up in the early hours, usually around 3am, and I watch some television, or reminisce myself back into sleep mode.

It is impossible to express how much I miss Anthony being here, in this house, on this/his farm; ‘longing’ is the best way I can describe it.

Often, my heart is tugged awake by this longing and sometimes I feel absolutely desperate to see him.

But sometimes I just don’t bother; I press my face into the pillows and try to avoid the day; I swallow the guilt with a glass of milk; I tell myself that he is in good hands; I sob.

Longing is a weird emotion; its nostalgia cuts into the throat of love, slicing page after page into new, fresh coherent sentences.

It is 3am. I am 15 kms away and wide awake.

I love you, Anthony.

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Another day with Anthony

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.

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