jmgoyder

wings and things

Apr 17

The wonder of nonsense!

by jmgoyder

The other day I was, as usual, seated next to Anthony in his nursing home room. We were watching the Food channel on television and, just for fun, I kept turning my head in his direction until he turned his head towards me.

Anthony has enormous eyes that are made even more enormous due to the fact that he doesn’t blink very much (Parkinson’s). So I kept joking about this and saying “What big eyes you have!” half-hoping he would remember the fairy-tale response.

Instead, he just kept sliding his eyes towards mine and, every time he did this, I cracked up laughing. Such a silly game but so much fun. I would sneakily avert my face from the TV and look at him until he looked at me and every time he did this I would burst into laughter which made him smile too.

Such absolute nonsense, but so hilarious for both of us. We’ve been doing the nonsense thing quite a bit over the last couple of years but it didn’t occur to me until now that this kind of interaction might be worth writing about.

I guess it would be hard to write this kind of nonsense thing up as an actual therapy, but, for us, it is proving to be the most wonderful thing. Anthony has always had the most amazing sense of humour and, despite all of his illnesses, this sense of humour is still intact.

I am so grateful that he and I can still get a laugh out of each other despite the circumstances. Ants has been in the nursing home for so long now that every single smile, regardless of nonsense, is like gold.

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Apr 12

Bump on the head!

by jmgoyder

A few days ago, I bumped my head rather dramatically. I’d stooped to pick up some clothes from the bathroom floor and stood up suddenly, forgetting to avoid the corner of the towel cupboard which is positioned above the sink. SMASH!

The lump on my head was massive to begin with, literally the size of a goose egg, but it has now shrunk to the size of a golf ball. When I had my hair cut the other day, my hairdresser was extremely impressed. She showed me the lump in a mirror and  described the bruising around the lump in rather gruesome detail. Obviously, she had to be really careful attending to my hair.

Yesterday I must have been having one of those attention-seeking days because I kept getting the nursing staff to feel my lump. I did the same thing this morning and got the same ‘ooh-ahh!’ response from various staff which was, of course, very satisfying.

The only two people who were unfazed (and remarkably unsympathetic) were Ants and Ming.

Ming: Get over it, Mum; it’s just a bump on the head!

Anthony: You need to be careful, Jules, you’re not a spring chicken anymore.

Anyway, since bumping my head, I have been really slack with both the writing and the reading of blog posts. I have also become  quite slack with cooking, cleaning, gardening, anythinging, but have also become adept at sleeping and watching netflix. Having armed myself with a fitbit a couple of weeks ago (between the asthma and the head bumping) it has been a bit discouraging to find that I have only walked about eight kilometres in as many days.

Once the lump from the bump subsides, I hope to become a more active blogger again but, in the meantime, I have a bit of a headache.

 

 

 

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Mar 31

Nostalgia

by jmgoyder

As Anthony, Ming and I travel this ‘undestinated’, unpredictable road of dead leaves, bright stars and joyous laughter….

….we sometimes pause, mid-step.

For us, Parkinson’s disease was so insidious in its approach that we didn’t know it had moved in with us until Anthony couldn’t open the jar of vegemite.

Now, his left foot is slightly twisted so he can’t manoeuvre the walker as well as he used to. But sometimes he can almost run with that walker!

I often dream back to our earlier years of absolute bliss, especially when ‘the Ming’ arrived. On waking, I try to go back to sleep, to recapture the dream, but it doesn’t always work. And even when it does work I then have to figure out the difference between the various realms of reality.

Several weeks ago, Ming said he couldn’t visit Ants anymore; it was too hard. I said okay and I understood, but I had a bit of a private sobfest. Thankfully, since then, Ming has continued to visit Ants.

Ming is so much like Anthony – in personality, looks, lackadaisicalness, acceptance of what is, charm etc. etc. I am so proud to be the mother of this son, and the wife of this husband.

 

 

 

 

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Mar 23

Life and death questions

by jmgoyder

Even though my mother and Ming have been visiting Anthony for the last week of this rotten asthma attack, I have worried so much about Ants.

The asthma is gone now but the side-effects of a steroid burst can include severe digestive issues. Not fun.

Anyway, I just rang the nursing home and my favourite nurse picked up and, as soon as I heard her voice, I started to cry. She quickly calmed me and asked me to tell her what was what and she said she would be seeing Ants in just a few minutes and would explain the reason for my absence.

I haven’t seen Ants for a week now and I don’t think we have been apart for this long ever, so it’s a difficult thing. On the other hand, perhaps we needed a rest from each other?

One friend recently suggested that Ants is only alive (having out-lived his prostate cancer + PD diagnoses) because of me. The implication of this is that my constant presence in his life is giving him the will to live?

No, he is not vegetative yet but it won’t be long. Ming and I are reluctantly ready but also absolutely terrified.

So surreal!

 

 

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Mar 22

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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Mar 21

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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Mar 20

Asthma 2

by jmgoyder

Okay so  six days ago I found the prednisolone  tablets I had last taken in 2013. Back then, I wrote some notes about how to combat an asthma attack with what is sometimes called a “steroid burst.” My instructions to myself were to take 100 mgs per day for five days then stop so that my body’s immunity could kick in. It is now day 6 and I know that in a couple of days I will be okay again; in fact I already feel okay – phew!

My instructions to myself also included things about not panicking, not re-living my childhood asthma, not worrying my friends and family unduly, not giving into fear and, importantly, getting fit and healthy again.

When Ming said to me the other day, “when will we not be sad, Mum?” I didn’t have an answer. I scrambled in my mind for an answer but couldn’t find one. I suddenly realised how my sorrow and grief about Anthony’s slow demise was affecting Ming. And I stopped breathing normally; hence the asthma?

This 22-year-old son of ours is the reason I am once again breathing normally; the asthma is gone; we have talked things through. I no longer need the prednisolone ….

I just need Ming.

 

 

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Mar 18

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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Mar 16

Once upon a time 7

by jmgoyder

He took me out for dinner. This had never happened to me before – this ‘out for dinner’ thing. It was at a place called Eagle Towers (which was, a decade-or-so later, the venue we chose for our small wedding reception).

I don’t quite remember which ‘goodbye’ this was but I think it must have been the first because I was so shy and ecstatic that this gorgeous man was taking me on a ‘date’! I was about to go somewhere; I think it was Sydney, but it might have been up north, or Europe.

We had a beautiful meal and he ordered a half bottle of champagne. I was shy, overjoyed, transparently in love; he was funny, loving, respectful of my youth, encouraging of my adolescent ambitions.

I wanted him to ask me to stay. I wanted him to say “please don’t go, Jules” and maybe he would have said this if it hadn’t been for the fact that he didn’t have enough money to pay for our dinner.

It was $42 and he only had $41 (I remember this so vividly!)

He drove me back to my parents’ house, walked me to the back door, hugged me fiercely and said, “Why do you have to go, Jules?”

 

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Mar 13

Friendships forged in nursing homes

by jmgoyder

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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