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 15

Love and laughter

by jmgoyder

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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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 26

Back to the birds!

by jmgoyder

I was going to write something poignant, but I am too fascinated by why these two pigeoney-dovey-looking birds keep rejecting my offerings. For ages they have been visiting two fence posts just outside my front window. So I left crumbs (which a clever crow immediately took), then I put nuts out on the top of those two particular fence posts.

During the night it rained so I guess the nuts are now a bit soggy. The two pigeon-dovey-looking birds seem almost to be afraid of my strange offering. I will have to be more subtle and I am not gifted with subtlety ha!

It is such a great relief to let go of the poignancy, to charge my camera’s battery again, to watch the birds from my front window – the most beautiful view – or just to sit on the front veranda watching the sky’s birds at near-dusk.

 

 

 

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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 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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