jmgoyder

wings and things

New kid on the block (and the reason I haven’t been blogging lately)

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Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.

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Agog

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Hands on!

Today, as I held Anthony’s hand in mine, he kept on bringing my hand slowly up to his mouth, then kissing it. This happened over and over and over again until it became hilarious for both of us.

Me: You are melting my heart, Ants!

Anthony: That’s as it should be.

Me: We never used to hold hands in the old days – it’s kind of weird – and I am getting a bit irritated. Sorry!

Anthony: Your hands are in bad shape. Mine have things on them [pointing to one of his thumbs and a finger where I could see nothing wrong].

Me: Does it hurt?

Anthony: No it’s wonderful.

Me: Oh, okay I think I get it. Well, you’re lucky – one hot day and I have the rotten blisters back [I developed a strange condition a few years back whereby perspiration causes this thing called pompholyx].

Anthony: You need to stop scratching them.

Me: Yeah, but it’s so itchy! Anyway stop telling me what to do. You’re lucky you have such wonderful hands.

Anthony: Yes, I do, don’t I.

Okay, so the above conversation was at around noon, then I met a friend for coffee. I got back to Anthony at around 2pm. The hand holding resumed but the conversation did a bit of a U-turn in the cul-de-sac of Anthony’s dementia. Instead of kissing my hand, he kept removing it from his and placing it very neatly onto the side of my chair.

Me: Why are you rejecting me?

Anthony: It’s in the way. Jules, can you take these off? [He raised his hands, palms-up to me.]

Me: So you want me to take your hands off?

Anthony: Yes!

Me: But why? I can’t remove your hands, even if I wanted to, Ants.

Anthony: They’re in the way.

Me: In the way of what?

Anthony: That boy.

Me: You mean, Ming, our son?

Anthony: Yes, that’s the one. Can he take these [again, offering his hands up]. They could join those two little sheds into one.

Me: I think that’s a fantastic idea, Ants and we should tell Ming as soon as possible. He and I already know what a fantastic farmer you are. Thank you!

Anthony: So when are we going home?

The wish to come/go home has, unfortunately, become a frequent topic of conversation lately, after about a year of Anthony forgetting all about this beautiful farm. I hate the moments of slicing lucidity in which he says to me that he wants to be back at home; I hate bluffing and promising this impossibility; and I hate my deception of course!

Anthony’s immobility, and other issues, make it impossible for me to bring him home, even for a couple of hours. I can’t lift him at all any more; he often requires two carers and a hoist.

He is, however, the most uncomplaining, resilient, beautiful person I will ever know and I am so proud that Ming has these attributes too.

Quite handy!

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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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Laughter

One of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.

Me: You like this chocolate mousse stuff don’t you?

Anthony: I didn’t always.

Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.

Anthony: Delicious.

Me: Okay well I have to go to work now (volunteer job) so is there anything you want?

Anthony: Your hair ….

Me: OMG yes, yes, yes, my hair is due for a trim – anything else?

Anthony: It’s a matter of urgency.

Me: Urgency! Are you kidding? My hair? How dare you!

Anthony: But your face is beautiful.

Me: Too late for that kind of rubbish, Ants – you’ve done your dash!

Laughter … the most wonderful, magical thing in the world.

 

 

 

 

 

 

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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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Contentment

I think that contentment is underrated. Anthony has always had it, and Ming has it too, whereas I have always struggled.

Lately, Anthony makes me feel the most wonderful calm; he is so accepting of what is (a huge lesson to me). Ming drops in between restaurant shifts and we all have a bit of a laugh at whatever show is on TV.

Today, after Ming left, this was my conversation with Anthony:

Me: We are all so lucky in our relationship with each other, Ants!

Anthony: Yes, we don’t seem to be losing any hours.

When I think about his words, I feel content.

 

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Once upon a time 6

During the many years in which the dairy farmer kept the young girl at arm’s length with brotherly bear-hugs, she somehow managed to finish her nursing studies and then an arts degree.

She had lots of adventures, jobs, friends – even boyfriends – all of which she would tell the dairy farmer about, much to his amusement. She would turn up at the dairy farm unexpectedly and be greeted by his yell of welcome … “JULES!”

The dairy farmer had been swept into a convenient relationship with a woman more his age, a situation that frequently broke the young girl’s platonic stance into slivers of absolute misery. Twice she bumped into the dairy farmer’s ‘girlfriend’ as the ‘girlfriend’ was leaving to go back to the city. These awkward situations were tempered by the guffaws the young girl and the dairy farmer shared in the wake of the departure of the ‘girlfriend’.

It was at about the time the young girl embarked on her postgraduate studies that the dairy farmer finally realised that she was now a young woman; that the age difference was now diminished by time. He let the ‘girlfriend’ go and rang the young woman, asking for a date.

 

 

 

 

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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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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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