jmgoyder

wings and things

Asthma

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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Friendships forged in nursing homes

When you place someone you love into a nursing home, the beginning is a blur. You don’t notice any of the other residents or their relatives; you don’t notice the staff. You fill out the forms and you answer the questions about incontinence and constipation and immobility with a gentle smile on your faked face. You cry secretly and often but you become very good at hiding your ongoing, endless grief behind an enormous smile….

…. until you meet someone who is experiencing the same kind of thing with her wonderful, but ailing, mother. N is the most amazingly resilient woman I have ever met. She ‘lives’ two doors down from Anthony’s room and she has the most beautiful laugh and the most poignant cry.

It only seems a moment ago that we were all playing a game of ‘Memory’ in the dining room – N, her daughter, Ants and me. Sometimes we were joined by others; sometimes we were asked to move to another room because our raucous laughter was too loud; now both N and Ants are too incapacitated to partake in such games except in a pretend kind of way.

These two wonderful people, Ants and N, survive and embrace each moment of each day with a kind of stoic acceptance.  And, within the tragedy of our ongoing grief, N’s daughter and I have become friends.

This friendship means the world to me because it is forged in the steel of our shared heartbreak. Thank you, Shaz

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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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The outings

It became impossible a long time ago for me to take Anthony home, or out for a drive etc. because he is just too immobile. But one of his many nephews, Michael, makes a point of coming down from Perth regularly and actually enabling such an outing.

Michael always liaises with me about what time of day, and we make a tentative plan. So, a few days ago, Michael arrived promptly at 10am and, with the help of one of the nurses, we got Ants into Michael’s car and drove down to the Dome cafe.

Over the years, this has been a regular occurrence and I love it because, without physical assistance, I can’t get Ants out and about but Michael makes this easy. It is a fantastic gesture and each of those mornings in Michael’s car, with all of us sipping coffee and Anthony gobbling his own, and Michael’s cake or biscuit has left an imprint.

Thank you, Michael.

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Dementia dialogues

I was writing these snippets on Facebook but, now that I’m having a break from Facebook (because I keep getting confused about what I have written where!) I’m just writing them here.

As I was trying to reposition Ants in his armchair the other day, this was our conversation:

Anthony: You’re such a great big thing aren’t you.

Me: What? How dare you!

Anthony: Well you are!

Me: That’s only because you’ve become a tiny little dandelion!

Anthony: Yes, but I have power.

Me: Oh you do, do you?

Anthony: You still love me.

Well, he does have a valid point!

 

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Shenanigans

I remember the day, decades ago, when I discovered an enormous spider in the kitchen of Anthony’s house. Anthony was milking the cows and his mother, who we all called ‘Gar’, was having her afternoon nap, and I was trying to get the lumps out the white sauce I was trying to make on the Aga, to mix with the tinned salmon. I was nineteen and, even though I’d lived in Papua New Guinea for three years and I wasn’t afraid of spiders, I thought it best if I killed this particular giant.

So I found the fly spray and used almost the whole can to crumple the spider onto the kitchen floor. It died simultaneously with the white sauce which I only just rescued the Aga from (another story).

When Anthony came in from milking, I told him about my heroics proudly. He was aghast.

Anthony: You killed Martha?

Me: What do you mean?

Anthony: Martha is our pet spider, Jules.

Me: Oh no, I’m so sorry.

Anthony: Mum will be devastated.

Me: But you didn’t tell me you had a pet spider. Why didn’t you tell me?

Anthony: Where is she?

Me: Your mum? She’s resting.

Anthony: No – where is Martha?

Me: I’m so sorry but I put her into the outside rubbish bin. (I begin to cry).

Anthony: Jules – I am kidding!

Okay, so over 35 years later, I am sitting next to Anthony in the nursing home and he is boringly slumbery, so I put my face up close – nose to nose – and shout “Wake up!” His eyes open but he doesn’t focus. I keep my face close to his and all of a sudden he launches up in his armchair with an unexpectedly loud “BOO!”and nearly head-butts me.

Me: You scared the hell out of me, Ants!

Anthony: That was the desired effect, my dear.

 

 

 

 

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Uncanny

Today I arrived at the nursing home in time to feed Ants his lunch after which he also consumed three chocolate bars – a Cherry Ripe, a Boost, and a Mars Bar (thanks, Mel!)

He chewed through all of this chocolate slowly – very slowly!

Me: Are you chewing every mouthful one hundred times?

Anthony: Yes, because I am enjoying it one hundred times.

But that’s not the point of this post. Even though Anthony’s previously loud voice has become such a whisper, this is what he said next:

Anthony: I can’t stop thinking about what X said yesterday.

Me: What? Was X here?

Anthony: Yes and he said “Where is Julie; we need Julie.”

And Ants actually repeated this a couple of times, and was adamant that X had said these positive words about me. So, whether Ants is deluded or not, I choose to believe it.

Good.

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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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Extraordinary!

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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“Ming the Merciless”

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!

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