jmgoyder

wings and things

Not so heavy.

This afternoon, Ants and I sat out in the sun, on the beach side of the nursing lodge, then went for a short walk up the rather steep driveway so we could catch a glimpse of the ocean.

To give you an idea of how exhausting this was for Ants, the distance up to the crest is about 15 – 20 ordinary strides. Anthony uses a walker of course, but can barely lift his feet so, for him, the distance to the crest was well over 100 shuffled steps, then back down again. Once inside, I could barely get him back to the armchair in his room and thought I’d have to get the wheelchair, but we made it.

Getting him to turn around, let go of the walker and sit in the chair took ages, and I finally used all my strength to sort of hoist him around and plonk him down. This left us both gasping and I got the giggles.

I bet the nurses are much gentler with you, I said.
But with you, there are sexual overtones, he said with a hint of a smile.
For God’s sake, Ants, are you crazy? I yelped.
Then why are you blushing?

I can assure you, I was not blushing!

31 Comments »

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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Parkinsonism, body thermostats, and the bitch.

The other day, when Anthony was home for lunch and the afternoon, and Ming and I were trying to get the living room warm enough for him, I became a bit impatient. We had a roaring fire going, a heater on, and two blankets on his knees, but he was still shivering with cold in a room so hot that I was soaked with perspiration.

Your thermostat’s had the bomb, Ants! I accidentally sort of yelled this as I was wrapping the stupid blankets under and around his feet.

Mum, don’t be such a bitch! Yes, that came from Ming of course.

Ants, can you tell Ming not to ever again call me a bitch?

And then Anthony said very clearly, I think, that in this context, it’s acceptable.

Shared laughter immediately thrilled its way through that hot room!

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Free lunch

Anthony’s Parkinsonism symptoms include difficulty in swallowing but, so far, he is still able to half-manage normal, rather than mushed meals. However, his appetite is diminished and he has a dribbling problem.

Recently I have been going into the nursing lodge in the late mornings so that I can help him with his lunch. The lunch meal is always huge and often a roast, and is delicious. Ants only ever eats half of it, so I secretly gobble the rest with a separate spoon or fork.

– Use my fork, he says.
– I’m not particularly keen on your saliva, I say.
– One more mouthful, he says.
– So you want me to actually feed you?
– Erotic, he says without hesitation, and I crack up laughing.

I wonder what’s on the menu tomorrow.

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Gutsy9 update in the form of a haiku

Gutsy9

Atop my shoulder
This beautiful little friend
My teenage peacock

[Many thanks to Samantha for this photo of G9 yesterday].

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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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