jmgoyder

wings and things

Anti-heroism and honesty

My post about Anthony coming home yesterday elicited a few encouraging comments for which I am appreciative, but also humbled, because I am not this hero I have somehow cast myself as, so I need to remedy that impression. No, I am much more the anti-hero, regardless of my good intentions. So this post is about honesty.

When Anthony comes home and wants to be the workaholic he once was, and draws attention to the things Son and I haven’t kept up with (lawns, garden, sweeping pathways, cleaning out the washhouse, washing the car), I become bitchy and resentful and say things like, “I’m doing my best. Why do you always have to find fault?” and sometimes I add a few expletives for good measure.

When Anthony comes home and can’t walk properly, I sometimes hurry him along and then (because he is heavy) thrust him into his armchair in a way that is not gentle and he says, “Why do you have to be so rough?” and I retort, “It’s the only way I can get you into the chair!” and he says, “Well, do you have to throw me?” and I snap, “Yes!” Sometimes we both then collapse into laughter so it’s okay, but sometimes we don’t.

When Anthony comes home and is in the armchair, asleep or semi-conscious, I sneak away and do other things because if he doesn’t want to watch Black Books or look at my blog or do anything except slump, I avoid him – yes I avoid him.

When Anthony comes home, I count the hours before I can take him back to the nursing lodge because he has somehow transmogrified into a job, rather than a person who I love and, even though this is difficult to admit, I love him more at a distance (both geographical and temporal). In other words, I love him the way he was and I find it difficult now to reconjure that.

He and I talk about these things which I realize probably seems strange, but he has always been my mentor, my confidante, my best friend so sometimes I tell him about how difficult he is as if he is another person, and he gives me advice.

“You will always be my hero,” I say, “but now Parkinson’s has got you.”

“I can get better,” he always says.

“No you can’t,” I say.

“But I love you,” he says.

And, just as I leave him at the nursing lodge, I say the words too – “I love you” – then I drive back home, sometimes teary, sometimes nostalgic, but always relieved, guiltily relieved to hand him over – my hero.

The picture below is of our two male golden pheasants who nearly fought to the death over a female and the one on the right, Phoenix 1, won the battle and now Phoenix 2 has been banished. I don’t know why, but it seems an appropriate picture for this post.

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Two more Hot Potato Award winners!

I didn’t want to cram any more winners into the previous Hot Potato Award post and I would really like to give these two amazing bloggers (who also happen to be people!) the HPA. Once again, this is not an award that has any obligations attached to it – you just take it and copy/paste it to your blog, or not.

The first blogger is a daughter who cares for her mother who has Parkinson’s Disease. She does this with a mixture of glee, energy and humour, but she is also very honest about how hard this can be.

http://camsgranny.wordpress.com/

The second blogger is a sister who cares for, and lives with, her brother who has Parkinson’s Disease. Her daily blog of the ups and downs of this journey is both heart-breaking and inspiring.

http://terry1954.wordpress.com/

Jo and Terry are both wonderful examples of selfless heroism. I take my hat off to them and hope they will accept this award!

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His name is Anthony

Until now, I have referred to my husband as “Husband” in this blog because I wanted to keep things a bit anonymous and private. But today, after two visits to the nursing lodge, and one little drive with Son, I realized that in not naming Husband – who supports this blog and me, who wants desperately to come home and be ‘us’ again – I might have dishonoured him.

His name is Anthony and he is the best Anthony you will ever meet.

His name is Anthony and he is the best husband and father Son and I could ever want.

His name is Anthony and he has battled kidney cancer, prostate cancer, diabetes, spinal problems and now – the worst disease of all, Parkinson’s disease – all with a huge grin and the kind of resilience I will never have. His sorrow at being in the nursing lodge is a daily grief for all of us.

Anthony.

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Engagement!

Tricked you!

This is a photo of Son and his great friend, Z, at one of last year’s school balls. Z. said it would be okay to put it in my blog.

Note: Son said he doesn’t want to get married until he is 57 because that is the age Husband married me – ha! I think Z and I would agree that Son can be a bit too reticent.

Z is like a bird of paradise, a breath of fresh, new air.

Son is like an avocado tree.

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Dancing days

It’s Sunday here and in a couple of hours I will go into the nursing lodge to have lunch with Husband. I haven’t seen him for a few days because I have had the flu, but we have, as usual, spoken on the phone several times a day. He has missed me terribly but has coped. I haven’t missed him as much, which seems a terrible thing to say but there you are – I’ve said it.

We have talked about this disequilibrium of the missing-you thing.

Husband: I miss you now, I miss you all the time.

Me: I miss you then, I miss the way it was when you were well.

Husband: But I can be the way I was. I’m getting better.

Me: It’s not your fault – it’s the bloody Parkinson’s. You’re not getting better, you’re getting worse – that’s why you’re here so you get proper nursing care.

Husband: I don’t want nursing care. I want you.

Me: But I can’t lift you anymore, and I can’t make you walk, and I can’t manage you during the nights.

Husband: So I am never coming home for the night again?

Me: I don’t know. What’s wrong with coming home for the days?

Husband: It isn’t enough.

Me: I know.

Husband: And where’s the kid?

Me: At another party.

Husband: Just like I used to be.

Me: Just like you used to be.

Now I realize this all sounds very poignant and sad, but it always (well, almost always) ends up in a laugh about the dancing days.

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Wrong way. Go back.

In Western Australia we have big signs wherever roadworks are being done in case people go the wrong way. This can be useful, but it can also be a bit confusing.

It’s a little bit like that with blogging because you get really curious to go down a certain blog path, you like what you are reading/seeing, but you are also uncertain of where exactly you are and sometimes the historical context of where you are, in that person’s blog, takes quite a bit of time, quite a bit of deciphering.

With my own blog, Wings and things, it’s obviously the same experience for new readers or followers because, of course, the latest post is always the most recent and, unless people  have time to go back, they might not ‘get it’ that there are two different-but-same stories running parallel. The Love story is about the past but everything else is about the present.

As many of you already know, my husband has chronic Parkinson’s disease and terminal prostate cancer and is now in a nursing lodge close by. Our 18-year-old son recently had major spinal surgery. And me – I love birds!

I can’t keep up with the many blogs I am interested in, no matter how hard I try, but one thing I like to do is to go back and read the very beginnings of those blogs which is what I hope people will do with mine. It’s not that there is a wrong or a right way necessarily, but going back can be fantastic!

Oh yeah, and if you go back, you will find that I don’t usually do 4 posts in the day. I cheated today with the pics – hehe!

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‘Cheer up, Jules – it’s not the end of the world!’

These were Husband’s words to me over the phone a moment ago. You see I have the flu again and so I can’t visit him and on the phone I got all teary about this, about letting him down. And that’s when he said, “Cheer up, Jules – it’s not the end of the world,” and made me laugh at my guilt and my stupid fluey self-pity. His beautiful voice on the phone, his little chuckle, his reassurance that it was okay to not come in today and to just get well – he sounded so normal and said he was fine.

It is possible that I keep getting rundown because I don’t know how to do all sorts of things here that Husband used to do, like ordering the kerosene and lighting the Aga for the winter, maintaining the garden, reading the electricity meter, maintaining his old BMW, knowing what to do when a pump goes wonky, unblocking the sink when the water table goes up, winding his collection of antique clocks, ratsacking the sheds, operating the lawnmowers, changing the oil in the old ute (truck), and so on.

Son and I are getting a handle on how to do these things and we both feel stupid sometimes for not knowing how, but all of these jobs were Husband’s while Son was at school and I was teaching at the university, so it wasn’t until Husband’s Parkinson’s got worse, and I had to stop teaching (nearly 2 years ago) that I realized how little I knew about how to ‘run’ this place. We are so lucky to have the beautiful neighbours, whose farm adjoins this one, and who Son will soon resume milking cows for, leasing this property and helping us with advice, support and emu rescuing!

Sometimes, when I ring Husband, or go and see him, he is disorientated, immobile, or he has a ‘turn’, or he is down in the dumps. But whenever I ask him for advice or support, he seems to catapult himself out of his Parkinsonism and rally for me, and for Son. He gives advice, he tell us who to contact about this or that, and he comforts us if things are difficult (like after Son’s spinal surgery).

So, when Husband said his cheering words to me, I realized once again what a hero I married. His resilience is awe-inspiring and takes my breath away. His strength of spirit is something I can only aspire to. He has made my heart huge.

So for any of you who are going through dark, difficult, challenging experiences, health problems, anxiety and/or depression, I hope Husband’s “Cheer up – it’s not the end of the world” axiom will help.

Don’t worry about the expiry date – just peel it off the ‘Cheer Up’ package!

Note 1: This doesn’t work for everyone, but there will be no refunds.

Note 2: It did work for me because if got me out of my flu fug and got me trying to be funny again (emphasis on ‘trying’).

I love Husband so much!

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I miss you

I miss you because you are one of the bloggers I mislaid when I unsubscribed from everybody’s and created a blogroll. I am still relatively new at this blogthing so please remind me if I have unwittingly forgotten you.

I miss you because you are my now impossible-to-care-for Husband.

I miss you because you are my now growing-up Son.

I miss you because you were my father and you died.

I miss you because you were the mother who loved music, and now you can’t hear it.

I miss you because you used to think I was okay until I became so unreliable, unpredictable, unsociable, but I didn’t mean to hurt anyone.

I miss all of the visits from friends and family because now home feels quiet and dead without Husband.

I miss myself.

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To the unsung mothers….

All day, I have been haunted by a compulsion to write a post for all of those mothers (and fathers) whose children have been lost to death, illness, or disappearance, because Mother’s Day would have been hellish for them. I don’t have the right words to write such a post because, every time I try, it just seems trite.

And what about those who are watching, waiting, hoping and praying that little K will be okay – this fantastic 5-year-old battling cancer and all the treatments – always with a big smile. K, her brother, her mother, her father, her uncle, her grandmother, and all of us, watch, wait, hope and pray.

I guess this is a humble salute to the unsung mothers for whom a Mother’s Day breakfast-in-bed would be as far-fetched as snow on roses.

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An apple crumbly day

Son and I went in for lunch with Husband at the nursing lodge today and it was lovely. Well, the food was lovely, Husband was feeling okay, Son arrived a little late from his last night’s party, and I was quite boppy but then, as Husband ate his dessert, my dessert and Son’s dessert, hardly looking at us, I felt my boppyness subside into a more low-key tone.

“Are you starving?” I asked Husband, laughing at his appetite.

“Well, you never make me sweets,” he said, polishing off the third apple crumble and custard.

Son and I got the giggles briefly and Husband glared at both of us, between mouthfuls, then winked and said, “Glad I provide you guys with so much amusement.” His mastership of irony has always caught me off guard and, as I didn’t have an appropriate response, I just said, “You are such a glutton!” and he replied, “And you are such a glutton for punishment,” and reached out and squeezed my knee.

Not long after this, when the three of us were back in Husband’s room, he started to have one of his ‘turns’, getting very drowsy and weird. We alerted the nurse, then eventually we left Husband almost asleep in his chair and came home. Needless to say, all my boppyness had dissipated. We had only been there for two hours but it had felt like ten hours – oh, the guilt of admitting this!

But worse was to come when Son said, “Mum, I don’t want to do this anymore.”

It seems so strange that only a few days ago, I was worried about Husband’s apparent heartbreak at not coming home to the farm overnight anymore; then, when we encountered such difficulties bringing him home just for the day (and his lack of mobility shocked me), I realized that all three of us have to somehow accept that the nursing lodge is home for him now.

So already, the routine we decided to stick to (several posts ago) has become impossible because getting Husband home has now become a big ordeal due to his deterioration with Parkinson’s, which I think is in its final assault mode. I hate this disease more than I have ever hated anything because it is so slow and cruel and humiliating and scary. Many of Husband’s best friends are nervous to visit him and I don’t blame them at all.

I think the most heart-breaking thing today though was when Son reiterated to me on the way home, “I don’t want to see Dad like this any more, Mum.”

And this puts me in a dilemma. Do I force Son to come with me to visit Husband or not? My opinion is not – and to let Son choose when and if. He has been through this huge scoliosis surgery which more or less coincided with Husband going to the nursing lodge and, now that Son is nearly out of his spinal brace, I think Husband and I need to let him go, let him do what he thinks is best.

Below is a photo of a photo of Husband and Son, when Son was just born. I love this photo!

Oh yeah, and I’ve never particularly liked apple crumble anyway.

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