Australia | jmgoyder

Common sense!

by jmgoyder

A few weeks ago Ming and I were having one of our on-the-front-veranda- philosophical discussions. I think it was nearly dusk but the sunset was around the corner of the house so I could only see it at an angle. This kind of experience reminds me of when my mother used to take us outside at dusk to look at the stars when my brothers and I were little.

I don’t look up enough into the sky’s various renditions; instead, I watch the loop of my internet feed, the news, blogs, my own constantly-halting story about Anthony’s Parkinson’s disease. Sometimes I feel inept, indolent; sometimes I feel an almost volcanic eruption joy after just sitting with Anthony for hours, holding his hand, stroking his head – just being with him.

Anyway, during the philosophical discussion mentioned above, I cry-laughed the story of how hurt I was by various situations and people over the last few months. “But do any of these things/people matter to you anymore, Mum?” Ming asked.

And all of a sudden, I realised that I was unnecessarily worrying about stuff/people/situations that, despite being an intractable part of the past, simply didn’t matter to me anymore. It was a revelation!

As Ming’s wisdom permeated my rather dusty psyche, I felt an enormous sense of relief and gratitude for the things/people and situations that DO matter to me.

Okay this is my last sentimental post about Ming for the time being, but he really is the most amazing person. Today this was our conversation:

Me: You are the best person I have ever met, Ming.

Ming: You didn’t meet me, Mum, you created me!

It’s nearing dusk and I am going outside to look at the sky.

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The pink sky

by jmgoyder

I watch the sky pinking from our front veranda and, breathing easily now, again, I wonder with a deep curiosity about your strong voice to me on my mother’s phone yesterday. Your voice was louder than usual, and comforting. You remembered my few-and-far-between asthma attacks just as you remembered the drama of how we turned orange from too much carrot juice years ago. I couldn’t believe how strong your voice was; you sounded so normal and in control; your voice wasn’t whispery, you didn’t sound confused, you helped me.

I have now drawn the blinds on a pink sky gone dark and am into day two of no steroids for the asthma. Some friends/commenters have suggested that this asthma attack may well be due to emotional stuff and I am quite willing to accept that possibility. Perhaps the ongoing, relentless, anticipatory grief of losing my beautiful husband has gotten the better of my psyche. Perhaps seeing our son’s grief and bewilderment has turned everything I once saw as pink into a dull grey. I don’t know.

It is probably a terrible pressure on a single son to ask for the pink in the sky to come back, but I know, without any doubt, that he can do this. Ming.

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Asthma

by jmgoyder

As a child, growing up in Sydney, Australia, and then Toronto, Canada, I was a chronic asthmatic. I remember my mother holding my toe through an oxygen tent, my dad rushing me to hospital from a camping trip, and our first day in Papua New Guinnea – a terrible asthma attack.

And then it stopped, just like that, for decades! Of course I always had an inhaler on hand just in case but the asthma pretty much left me alone until a few years ago. It was about a year before Anthony went into the nursing home. I was working at the university and up and down every night attending to Ants, and trying very hard to maintain a happy household for little Ming.

The ‘whoosh’ of an asthma attack is terrifying but, when it happened a few years ago, I didn’t recognise it because it had been so long since I’d experienced it. It was only when I saw my own blue face in the mirror of the hospital bathroom that I realised something had to change. So I gave up my job.

Now – today – this week I am having an asthma attack. I found the prednisolone from 2013 and am dosing myself wisely. It is day 4 and I am not scared because by day 5 it will hopefully pass. In the meantime my amazing mother is giving Ants his lunch.

Whenever I am sick like this I feel so much empathy for my friends who suffer chronic, ongoing diseases. I don’t cope well with my own suffering; I am pathetic! But I do care.

I can breathe.

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Food, glorious food

by jmgoyder

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

by jmgoyder

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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Extraordinary!

by jmgoyder

Ever since I described Anthony as being in “good physical health” on my blog, which seems an hilariously ironic way of describing someone who has just turned 80, is living in a nursing home, with more diseases than I can count on one hand, Anthony has been remarkably fit!

It has been an extraordinary few days with Anthony walking (with his walker of course, and accompanied by carers), and talking with a bit more gusto, and smiling widely with the various staff who come and go from his room.

Today, my mother visited us in his room and it was such a delightful day. Even though Ants often refers to the mostly female staff as “those guys” he still gets a real buzz from the way many of these beautiful women flirt and banter with him.

Apparently Ants has been walking better and doing physiotherapy and occupational therapy better and he even demonstrated some arm exercises with the OT today in our room. It was hilarious and I am so grateful for these people who really do care about him!

Of course, he isn’t getting better. That would be, physiologically, impossible, but his extraordinary liveliness this week has been such a buzz. I know I’ve said this before, but Anthony is the most resilient person I have ever come across; he never complains even when I say no to his requests to come back to the farm (often his childhood farm, not this one). He accepts the status quo, accepts his health problems, accepts that when I leave to go grocery shopping and he says, “don’t be long, Jules”, I am not coming back until the next day. And this almost never comes back to bite me.

This afternoon, one of the OTs said Ants was, as always, invited to “Happy Hour” (a monthly event in the common room). His response was a perfect representation of how extraordinary and funny he is:

Anthony: Is that with all the old people?

Me: Yes, but it could be fun; we’ve done it before, remember?

Anthony: Do I have to?

Me: No, of course not!

Anthony: They’re all so old so no thanks.

And I am reminded again of the best gift Anthony gives me, not every day but often enough – laughter.

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Who am I?

by jmgoyder

No matter how prepared for it you are, it still comes as a shock when a person you love stops recognising you.

When Ming dropped in to see Anthony on his way home the other day (it was early evening), Ants didn’t know who he was but guessed that it might be S, his youngest nephew.

I told Ming not to take it personally and that lately Anthony sometimes disassociates me from Julie and will ask me where she is. This lack of recognition doesn’t hurt at all because I have been half expecting it anyway and it is very easy to convince Anthony that I am Julie. But of course Ming was, understandably, hurt and perturbed.

In this final phase of Parkinson’s disease dementia, Anthony is experiencing paranoia, delusions, hallucinations and extreme confusion. Now that he has so much trouble speaking (physiologically and cognitively), I am getting better at listening to his whispered fears.

Anthony: Watch out for those boys.

Me: They aren’t boys – they are the nurses looking after you, Ants!

Anthony: Are you sure?

Me: Yes!

Yesterday it was me, my mother, Ming, and multiple staff, popping in and out of his room, enabling his grin but, after individuals left, Anthony would ask, “Who was that?” – even about people he has seen daily for years.

It is quite possible that one day I will go in to see my husband and he won’t recognise me, but I have decided not to worry about that day. He is still in good physical health (well for an 80-year-old!)

And even if he doesn’t recognise us as us, he will still want Ming’s boisterous hugs, my double-handed hand holding, my mother’s silent knitting, and the banter of the staff at the nursing home.

Who am I?

I am the person who reassures Anthony that the farm is going well, that the money situation is fine, that the cows are being milked by an amazing team, that there is plenty of kerosene for the Aga, that his mother is fine, that I will buy a mango for tomorrow….

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Candy

by jmgoyder

Yesterday I wrote a post which I later edited because my grief sometimes interrupts my sense/ sentence structure. And I get worried that I might unwittingly upset someone good in Anthony’s family.

Candy is one of Anthony’s many nieces; she is also his god-daughter and Ming’s god-mother. But she and her husband live a long way away, up north on a station that suffers frequent droughts.

Her brother (the nephew who visits Ants every weekend), often brings Candy’s letters to read to him. I keep these in Anthony’s top drawer and often re-read them to him, which always makes his day!

Maybe this is an idea that could work? Maybe friends and relatives could email me these letters and I could read to Anthony?

Every time I read a Candy paragraph, he smiles. Thank you, Candy.

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Communicating with Anthony

by jmgoyder

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’

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