jmgoyder

wings and things

Poetry and sentences

When a little parrot you have never seen before

trips clumsily over the fragment of a mung bean sprout

you have placed on the balcony ledge

of the resort you have brought your mother to, to celebrate her 82nd birthday,

you hold the rest of the mung bean sprout in the palm of your outstretched hand

and smile when that little parrot takes it and flies away,

its wings flapping once

like a wink.

 

That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.

 

Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.

 

I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.

Anthony: I think I might stay here.

Me: That’s fine, Ants. I’ll see you after the birthday lunch.

48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.

 

During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.

 

I saw the kookaburra once more, from a distance.

My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….

Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.

And I know that parrot’s address

like a wink….

 

 

 

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Dementia Dialogues 21

Me: I’m a bit upset about these wrinkles on my cheeks that I’ve just noticed, Ants – see?

Anthony: Yes.

Me: What do you mean by ‘yes’? You’re supposed to say that you can’t see any wrinkles!

Anthony: But I can [and, OMG, he puts a finger into one of the many new little grooves of my left cheek!]

Me: I’m not happy about this, Ants, and, by the way, the only reason you don’t have wrinkles on your face is because the Parkinson’s Disease has made your face expressionless!

Anthony: That was not my intention.

Me: What? What!

Anthony: You look beautiful, Jules.

Me: Okay, but do I have wrinkles?

Anthony: Just the nice flavour.

I tried to laugh without further crinkling my face….

 

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Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.

 

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Caring for the carer

I am on the brink of facilitating a couple of carer support meetings, so I thought this would be a good place to air some of my thoughts beforehand.

Carers/care-givers – who care for and/or about loved ones who suffer from diseases like Dementia – are, according to the latest research findings, amongst the loneliest people in western society. The loneliest people are, of course, those with Dementia, especially those in care, like my husband, Anthony.

I have always loved being alone and am comfortable with solitariness. I am not naturally gregarious but I do enjoy the company of friends. Until recently, I have never actually felt lonely, but now I do – acutely. I miss Anthony being home with me, with Ming, milking the cows, chopping firewood, lighting the Aga, cooking steak on the barbecue, washing the car, watching ‘The Bill’, snuggling up in the big bed with toddler Ming in the middle.

But these memories are now nearly two decades old. More recent memories are stark with the years of frustration, avoidance, anger, sorrow, exhaustion – mine mostly. Having to quit my job in order to take my husband to the toilet, to stop him from falling over, to hide the car keys so he wouldn’t try to drive, to turn taps off that he’d left running, to open the vegemite jar when he couldn’t….

For awhile Ants and I hid what was going on from little Ming but it wasn’t long before Ming had to help out. I became so exhausted that I ended up in hospital and after that Ming and I shared the night shifts with Anthony.

And then – years later – the nursing home decision, the subsequent paradox of guilt and relief and now – more years later – the ongoing grief and loneliness. I miss him so much!

I am very glad to have the opportunity to facilitate these carer support groups because I have developed a few ways of coping better than I used to. Until I became involved, as a volunteer, with these groups, I had no idea that there might be some support for carers out there somewhere. If I can be a part of this, I will be so glad!

 

 

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Galah!

Today Anthony was perky, lucid, vocal and even sarcastic!

I had picked a double camellia bloom from our favourite tree but forgot to take a photo (sorry, flower-lovers!)

Well, he loved it but its stem was too short so one of the carers brought a bowl in so we could somehow keep it alive until tomorrow. There were many admiring exclamations from staff and I felt quite the gardener – ha! On this first day of Spring, there will be many more blooms and I will take them in every day because it gives Anthony such delight.

My mother, Meg, visited this afternoon and she, too, admired the double bloom.

Meg: This is a potentially prize-winning flower, Anthony!

Anthony: Yes.

Me: Ants, it’s my tree – remember? I paid a small fortune for that tree!

Anthony: Yes, but I nurtured and loved it.

Meg: I think God created it but did you have a hand in it too?

Anthony (smiling): Yes.

Me: I’m the one with the foresight to buy a rare tree!

Anthony is silent.

Me: Have I upset you, Ants?

Anthony: No, but you are irritating me.

A lot of banter followed this, then my mother went home. I put the food channel on for Ants and, as usual, pretended to go shopping for chocolate or blue cheese, saying I would be back later.

So, after a very panicky few weeks where I thought Anthony was on the brink of death, he has now come back to life it would seem. Surreal! How does this happen? It is beautifully scary but so disconcerting.

The last thing he said to me as I left this afternoon was “You are such a galah, Jules!”

Yep, I agree!

 

 

 

 

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Day by day

Today, Anthony ate his vitamised food well, was able to speak a bit, and smiled at my mother, who has recently returned from a wedding in Melbourne. It was while she was away that he had the TIA (mini-stroke) that really freaked me out and catapulted me into making funeral arrangements – mainly because he’d had another of these two days prior.

Even before the nursing home, Ants had had these mini-strokes and twice I called the ambulance and he was hospitalised. Both of these experiences were dreadful because he became so disorientated and anxious but at the time I didn’t know what a TIA was.

Today I spoke to one of the many lovely nurses at the nursing home to check with her if I’d signed the ‘not for resuscitation’ form. That was a yes. But I also wanted to check that I had signed off on the end-of-life form, so we are going to discuss/check this tomorrow because I don’t want Anthony hospitalised, or given a feeding tube, or any interventions that might prolong suffering.

Anthony doesn’t appear to be suffering but his feeling intensely cold during the day, and hot during the night (and I remember this from when he was still home), may actually be physical pain? I don’t know because he rarely complains. And even if he wanted to say he is thirsty – and he is suddenly thirsty constantly – his ability to speak is too diminished to express anything coherent to the carers.

He was always a larger-than-life person – loud, boisterous, the life of the party, and Ming (Menzies Goyder) is such a clone of Anthony. I love this!

And now, this evening, as I reflect on today, I realise that Anthony is also a larger-than-death person. Yes, he will probably die in the next few months or weeks but he will live on in so many hearts because he is so loved, by so many – not just Ming and me.

 

 

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Flights of fancy

A few weeks ago, Anthony told me he had been running all morning.

Me: How far did you run?
Anthony: Eighteen miles.
Me: Well, it’s no wonder you’re so exhausted! You must have overdone it. You’re not a spring chicken any more, you know, Ants!
Anthony: Shut up (smiling)
Me: Well bravo anyway. Have a nap if you want. You deserve it. I could never run that far!
Anthony: No, you couldn’t.

I love these flights of fancy, these ‘fabulations’ and, even though I know they are a product of Anthony’s Parkinson’s disease dementia, they don’t differ so much from what we all experience sometimes. Often I will wake up in the morning with what I call ‘adventure dreams’ still hanging around in my psyche, waiting for the next chapter, or a conclusion.

For someone who can barely walk now, it’s beautiful to know that Anthony thinks he can still run.

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Love and laughter

I think if I had to choose between love and laughter in a relationship, I would choose laughter. Obviously, having both is ideal but love can be so heavy sometimes, whereas laughter is light.

Today, Anthony was in great form and when I arrived he was participating in a game of coits during “gentle gym”. I joined the game by his side and Kaye (pseudonym), one of the OTs, was running things and she is such a fun-loving compassionate person, she made Anthony feel good about himself despite his bad score! Many of the residents were, like Ants, wheelchair-bound, and couldn’t really throw the coits but it was still fun and there were a lot of laughs. I think I will make a point of going to these sessions regularly because it was obvious that Ants was thrilled I was there.

Later, in his room, once he was settled back into his armchair, we had the following conversation (he has been extremely vocal lately – just when I was getting used to his silence).

Ants: I haven’t seen you for awhile.
Me: What a lot of rubbish! I saw you the day before yesterday!
Ants: No, it was the day before the day before yesterday [accurate!]
Me: So are we heading for an argument?
Ants: No, but sometimes I think you have run off with another man.
Me: How ridiculous! Why would I do that when I adore you so much?
Ants: I’m not sure you do anymore.
Me: Okay now listen to me, you idiot. It’s not all about you. Sometimes I need a break and sometimes I need to do other stuff.
Ants: Like what?
Me: Laundry, housework, cooking, Ming.
Ants: So where will you be tonight?
Me: At home of course.
Ants: Where is that?
Me: Bythorne [the name of our farm]
Ants: Bythorne? [looking very surprised]
Me: Yes, silly!

The conversation meandered over the few hours I was there, but here is another excerpt in response to a cooking show on television:

Me: Look at that roast duck!
Ants: Beautiful.
Me: That guy has cooked it slowly for over three hours.
Ants: Too long.
Me: Yeah, but it looks perfect, Ants!
Ants: You have a point. When are you going to cook it?
Me: Actually, that’s a great idea but I need to get the Aga going first.
Ants: I lit it the other day but we need more kerosene.
Me: I am ordering some next week.
Ants: Isn’t the grass green [looking at the wall]
Me: Yes, it’s wonderful.
Ants: Do you want me to light the fireplace? [trying to get up – impossible]
Me: No, Ming’s already done it.
Ants: He’s a good son isn’t he.
Me: He’s a great son.

And, as I was leaving:

Me: I have to go now to get some groceries.
Ants: But every time I let you go, you don’t come back until the next day.
Me: But I do come back! I love you so much, Ants.
Ants: I don’t love you as much now.
Me: What? Why? How dare you! [tickling him]
Ants: Because you keep leaving me and I don’t know where Mum is.
Me: Argh! Ants, we are in a nursing home and you are in good hands. You have Parkinson’s disease and I have to go and get some groceries! Get with it! I’ll see you tomorrow.

Okay, so all of the above was love-driven but it was the hilarious laughter and smiles we both shared that made these poignant and bittersweet conversations absolutely wonderful. It was one of the best days Ants and I have had for ages.

The love hurts, but the laughter heals.

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Food, glorious food

One of the things I often say to Anthony, when I am leaving him to come home, is that I am going grocery shopping. As he was, and still is, a great lover of food, our grocery conversations often flow like this:

Me: I need to go to the butcher shop before they close. Do you want me to get some steak?

Anthony: Yes but not, not ….

Me: Not T-Bone?

Anthony: Fillet.

Me: But I love T-Bone! Why do you always insist on fillet?

Anthony: Better value.

Way back when Ants was home and still fit, his method of cooking steak on the barbecue was absolutely brilliant. He had it down to a fine art and wouldn’t let anyone help. The steak was always absolutely mouthwateringly delicious (as were my accompanying salads of course!) Apart from our many merry guests over the years, the only additional accoutrement was hot English mustard; wine and beer were a given.

Oh how I miss those days!

Anthony’s dementia means he is spared from the kind of nostalgia I feel because ‘those days’ are still here somehow and this afternoon he happily sent me off to the butcher’s for tonight’s steak.

He doesn’t know that, while one of the wonderful carers is feeding him his dinner right now, I am home, steak-less but smiling with these very happy food memories….

And eating yesterday’s popcorn!

 

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Impasse

There is always a dilemma when you want to write a story that might hurt other people the way the story’s reality has hurt you.

Recently, I have wrestled with how to reconcile forgiveness with writing the truth of my decades-long relationship with Anthony, including all of the pitfalls.

The “love story” and “once upon a time” posts began to retell a story that has already happened. But, as soon as I ventured into writing the ugly bits of the story, I received some pretty nasty flak; some advice to be careful what I write;  and, paradoxically, some encouragement to keep writing the story; etc.

So, in order not to upset people, I’ve decided to continue writing this story on a different blog – an anonymous platform – from which I can divulge, in story-telling detail, the truth.

In the meantime, this blog will remain positive.

 

 

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