jmgoyder

wings and things

One-liners

Anthony has always been really good at encapsulating what would take me paragraphs to describe. And, in between the worsening mumblingishness of his speech, he comes out with extraordinary witticisms.

This afternoon, for instance, we were drinking red wine and watching an appallingly good soap opera on TV when the guy in the next room (I’ll call him John for anonymity) accidentally walked in.

I see Anthony’s eyes, usually expressionless, harden. So I get up and gently steer John back into the hallway where a nurse takes his arm and tells him she has made a cup of tea. He looks back at me and says, Tomorrow we gistust this potatoes worry, okay?

Leaping back into Anthony’s room (before he drinks my wine!) I ask him about John.

What do you do when he comes into your room and disturbs you? I ask.

He looks at me really seriously and quietly says, PANIC!

I laugh so loud that a nurse comes in, worried that I am upset about the John incident. I tell her what Ants said and she guffaws too.

As I am leaving, I hug my husband and he whispers in my ear, I am making people laugh again, Jules!

So you’ve stopped the grumpy thing? I ask, hopefully (knowing that my gentle man has become uncharacteristically cantankerous lately).

But in just these few minutes of saying goodbye, he has gone somewhere and there is no point trying to follow him.

So I go to where my sobs won’t be heard – the disabled toilet near the exit from the nursing lodge – then I wash my face, put my lipstick back on, and go back to say seeya to Ants.

Panic.

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Silence

Silence is not always golden – it can be a lead, dead weight.

At the nursing lodge, I am learning, with restless determination, how to sit in silence with Ants who is beginning to forget how to talk, to form sentences/words.

So what do I do? I talk frenetically, I throw myself around his room, recharge his phone, make sure his airconditioner is onto heat, turn the TV onto ABC, put the new heatpads into his slippers, hug and kiss him. Sometimes I am there for a few hours, sometimes just a few minutes; if I can’t get into town, I eventually get him on the phone.

His silence on the phone, and in person, is sometimes deafening.

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Joy

It seems indecent to feel, or worse embrace, joy, when your loved one is disappearing.

But joy is clever; it sneaks into the mud of your sorrow and explodes it away in rainbowish sparkles.

It is nearly 35 years since I, rather transparently, fell in love with Anthony and he kept his reciprocal feelings secret (I was, after all, still a teenager and he was over 40).

I think of what we had, what we endured, what we celebrated, and what we have now, as a big kind of love – huge, inviolable, but feather-light, a joy.

I have never felt so sad.
I have never felt so happy.

Joy.
Anthony.

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Parkinsonism

I am finding it very difficult to talk/write about this without crumbling into a teary mess of memories. Hopefully, it will be okay if I just post short glimpses of how Anthony’s Parkinsonism revealed itself. It’s not all tragic, of course, and we continue to have many comic moments.

My first memory of something being amiss with my macho-machine husband was when he couldn’t open the Vegemite jar for our morning toast. I even remember teasing Anthony which, in retrospect, seems cruel, but we had a buoyantly bantery relationship, a beautiful little son, and I was adept at opening jars of Vegemite for Ming.

Little did we know then that Parkinsonism had moved into the spare room.

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Thanks!

Just checking in halfway through my blogbreak. Thanks to all for comments on last few posts – I really appreciate it and had intended to reply, sorry!

I’ve temporarily unsubscribed from most blogs to give myself a break, but will get back eventually I hope.

It’s just that I am so sad at the moment, about Anthony, because of how fast the dementia is happening now.

Ming, Gutsy9 and I are all fine which somehow seems wrong. I miss Anthony so much.

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An eventful year (1995)

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In 1995, I got a part-time job at the local university lecturing in creative writing.

In 1995, Anthony was diagnosed with kidney cancer and had his left kidney removed

In 1995, Ming turned one, was baptised, went from crawling to running, learned how to clean his teeth, got into the vroom of things, slept peacefully, learned how to wash a car, yell HURRAY, climb mountains and open his own Christmas presents.

But, of the three of us, I am the only one who remembers any of this now because Ants is too old and Ming was too young.

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Dementia and distress

Until recently, Anthony’s level of distress was due to an entirely rational sense of homesickness. Recently, however, it has been exacerbated by an irrational fear that I no longer love him.

Today he forgot that he saw me yesterday (it’s the first time this has happened), so he was really upset. I had to remind him about yesterday and then he was apologetic for having forgotten.

At this stage of his dementia Anthony can fluctuate between lucid and not lucid in the space of a single sentence. He frequently hallucinates various animals (usually calves), gropes for the right word constantly, and is exhibiting several behaviours that are totally out of character.

I hesitate to say this but I’m beginning to think that full-blown dementia would be better than this limboland. It’s not that any of the above shocks or upsets me too much because I nursed people with dementia for years, so I know what to expect.

The thing that is most distressing for me is Anthony’s distress and the fact that I have never ever known him to be so sad until now. And that is my sad too.

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Grateful

When I got an email from doudou (my blog friend), I went to her blog and saw this! I’m a bit emotional at the moment so I cried and laughed at the same time.

Thank you so much, doudou, for upside-downing my frown into a great big grin.

http://doudoubirds.wordpress.com/2013/04/23/ode-to-tina/

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Telephone troubles

For some time now Anthony has had diffculty with his phone at the nursing lodge. He forgot how to use it to ring me ages ago, but now it seems he has also forgotten how to answer it.

I couldn’t get into town to see him today and I nearly went mad tonight, trying his phone. Usually I ring the nursing staff to help him answer his phone and they are wonderful, but I thought I’d give them a break tonight.

Ming and I will see Ants tomorrow and that’s great but I worry so much about Ants being cold. He feels the cold terribly and winter is approaching.

I’m having a hard time coping, so am taking a break from reading other blogs for a few days so I can figure a few things out – including Anthony’s telephone!

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Refrain

I am so sick of saying the same thing over and over and over and over and over again.

Today, when I got Anthony home for the afternoon, he asked, for the millionth time if he could stay the night. And for the millionth time, I reminded him that he was in the high care section of the nursing lodge and needed two people to lift him etc.

He looked at me, his eyes hard, and said, “So now I know you don’t care about me anymore.”

It was too much for me to bear and I lost my temper, interrupting this regular refrain with a few minutes of hysterical rage which woke us both up and, thankfully, ended in a mutually apologetic hug.

Then the wheelchair taxi arrived to take Ants home.

Refrain.

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