jmgoyder

wings and things

The Anthony book

I am finding it extremely tedious and time-consuming (and a bit traumatic) copy/pasting bits of my blog into a possible book about our journey into the land of Parkinson’s so I’ve decided instead to begin to write the story afresh. Going back to the sadder blog posts is only making me sad whereas writing the story with the benefit of hindsight, and from a position of acceptance seems a better way to approach the project. The blog posts are a reliable historical record of events so I can always refer to these, and even quote myself (weird!) if need be.

I don’t want the book to be in any way academic because my last book, We’ll be married in Fremantle, was a rewrite of my PhD thesis so didn’t quite get the interest (or sales!) that it might have if had been marketed differently. For instance, the title of that book in no way indicates that I was writing about Alzheimer’s disease and about how to appreciate the storytelling abilities of sufferers.

Rewriting something seems to me a bigger task than writing something from scratch; rewriting the thesis as a book was a very long process (two years!) so I don’t want to have to do the same kind of rewriting thing with the blog. I have a bit of a problem at the moment with the whole re thing!

Instead, what I want to write is a book that is partly auto/biographical, partly how-to, and partly humorous. I want each chapter to incorporate each of these attributes and to work as a stand-alone essay/story.

Today I saw the biggest smile I have seen on Anthony’s face for a long long time and the carer who came into his room to give him his pills was astounded! He has almost begun to grin again now – incredible! Is my conjuring of daily smiles actually improving the muscle function in his face? If so, maybe some scientific person could research this and send me the findings ha! Hint to the Michael J Fox foundation….

The Anthony book will not be a very big book because I don’t want to repeat stuff that everyone already knows about the hardships of disease and caring etc. I just want to write, in the same personal style I use in this blog, about our slant on the more difficult dilemmas Ants, Ming and I have faced, in the hope that this will be helpful to someone/anyone!

Here is my chapter plan so far:

1. Thinking about the unthinkable (diagnosis shock, incontinence, fear of nursing home possibility)

2. Losing the love story (how having to care for someone takes its toll and affects relationships – Ming’s perspective useful here)

3. Hiding (carer withdraws, escapes, becomes workaholic in her job in order to avoid husband’s constant needs)

4. It’s not just all about you! (finding some sort of balance between young and old, sick and well, angry and happy, sad and funny etc.)

5. Lost and found: Anthony’s smile.

Anyway, that’s what I have come up with so far in terms of structure and content and any feedback appreciated!

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“C’mon, Mum, have a laugh!”

One of things Ming says to me most often these days is “C’mon, Mum, have a laugh!” So today I will tell a funny story.

Gutsy9, the baby peacock, is now two weeks old and is quite happy to sleep in his box at night as long as he can spend the day on my shoulder. Well, when he was one day old, Ming and I had to go to town to do numerous things and I didn’t want to leave Gutsy9 alone for so long, so I took him tucked into my shirt. Ming had a gig to set up for, I had a lunch date with friends, then Ming had a counselling appointment and I was going to visit Ants (another reason I took Gutsy9 with me – I wanted to show him to Ants.)

Okay, so I dropped Ming off and went to the restaurant. Gutsy9 was asleep inside my shirt almost under my left arm so I kept my left hand on him through the shirt, sat down at the table with my friends and ordered. Gutsy9 was quiet to begin with but soon woke up and chirped, so I took him out and showed my friends who were rather aghast so I quickly chucked him back into my shirt and joined in the various conversations. A couple of hours later I picked Ming up to go to counselling and he’d forgotten I had Gutsy9 so said, “Oh that bloody bird – you’re the one who needs counselling.” He was quite nasty and I was hurt.

Anyway, the counsellor had asked me to come for the first bit of Ming’s session so I went in with him but said I couldn’t stay long because of the bird. I pulled Gutsy9 out of my shirt to show her and she looked, well, a bit surprised to say the least. Then we all sat down and she asked me how I was. It never ceases to amaze me how those three simple words ‘how are you?’ can reduce me to tears – which is what happened much to my horror. I said Ming and I had just had another altercation blah blah blah, and she suggested I stay for the whole session but I said no because I wanted to take Gutsy9 to show Anthony.

So I left and drove up the road to the nursing lodge and spent a very pleasant hour with Ants and Gutsy9 then went back to pick Ming up. By then, Ming was repentant but tentatively suggested that I should have some private counselling sessions of my own because he had been helped enormously. I told him I would think about it and we went home.

It was a few days later, when I was telling some other friends about the counselling experience, and they were laughing hysterically, that I realized how stark, raving mad I must have seemed to the counsellor and to my lunch companions!

Anthony, on the other hand, wasn’t the slightest bit nonplussed because he knows me, adores me and accepts me.

So, “C’mon, Ming, have a laugh!”

And guess what – we are both laughing today – yeeha!

Gutsy9 just hatched.

Gutsy9 just hatched.

 

Gutsy9 - 2 weeks old today!

Gutsy9 – 2 weeks old today!

 

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Last Christmas

Last Christmas, my husband, Anthony, was still living here at home. This year, on Christmas day, he will be visiting for a few hours via a wheelchair taxi and then going back to the nursing lodge. I am having a very hard time accepting the reality of what has transpired over the year – Anthony’s deterioration with Parkinson’s disease, Ming’s spinal surgery, me having to resign from my job as a university lecturer, and a whole lot of other stuff.

Tonight, Ming (nearly 19) saw me struggling with my seemingly endless grief and told me that he was scared – scared that I was totally ‘losing it’. That made me cry even more until he said, “Mum, please just let me in, let me help, we only have each other.” Then he vacuumed the inside veranda, cleaned the microwave and refrigerator, hung out the washing and sang one of the songs he wrote this year – You and me, cup of tea – while he was doing all of this.

I have never understood the term ‘griefstricken’ until now – not just my own, but others’ of course. And now I have the flu and am feeling sorry for myself while parents are grieving beyond any grief imaginable. I can’t say any more about this because I don’t feel I have the right to intrude on the already-trampled privacy of the griefstricken.

This will probably be Anthony’s last Christmas.

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Saying ‘I love you!’ to a stranger

Okay, I don’t do this all the time but today a woman behind a counter served me with a smile even though she could see the desperate, psycho look in my eyes.

“This is a mobile phone,” I began (which, in hindsight, seems a rather obvious thing to say as I was in a mobile phone shop).

She smiled, patiently and asked, “And….?”

“Well we bought it from you guys and it belongs to my husband who is in a nursing home and it’s supposed to be easy to operate but he can’t answer it before the five rings and I want the message thing eradicated and I have brought it back twice and rung all of those numbers and followed all of the prompts but I still can’t get the stupid thing to ring more than five times and all of his family and mine are going mad because nobody can get through to him and twice the stupid message my son put on my husband’s phone has been eradicated but it keeps returning like some sort of phone ghost and….”

“Would you like me to take a look at the phone?” she asked calmly.

“Yes, okay,” I said uncalmly, “but we have been here before and done this before and honestly I am really going insane and people are getting angry with me because they can’t get through to my husband even though I have changed all the settings and my brilliant son has altered all of the thingys and why won’t it work?” By now, Ming, having had a nice chat with someone he bumped into, was at my side whispering to me that I was getting a bit loud.

During my little rant (and I wasn’t really that loud), I had half noticed that the woman serving me was pressing buttons on her phone, our phone, a computer, another phone, and another computer, at such astonishing speed that for a moment I thought she had 50 fingers. And then she handed me the phone, demonstrated how it would now ring out before cutting into the stupid message bank thing, and my whole body wilted with relief that finally this ongoing problem was solved.

But, just before I decided to smile back at this woman who I now felt resembled an angel, I said, “But we’ve done this before and it reverted back to the same problem, so how do we know it’s going to work for sure this time?”

“Oh,” she said, “I have the code, so it’s quite simple. You won’t have any more problems with this,” she said, again handing me Anthony’s phone and glancing at Ming in a way that indicated that (a) she’d had enough of us, and (b) she admired him for coping with me (yes, I  really did see that kid-versus-parent-empathy, flick of the eye-lash exchange between them).

OMG – the phone was fixed? After all my struggles with it? A miracle.

“I LOVE YOU!” I whooped at the woman who had served me, and she smiled with the joy of her job and waved us goodbye and then I let out another whoop of joy as Ming and I left the shop to go and take the phone back to Anthony.

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A letter of thanks

I have decided to write a letter of thanks to the wonderful staff at Wattle Hill Lodge so that they know how much they are appreciated. This is a first draft!

A letter of thanks to all staff looking after Anthony

Thank you for being so kind and considerate, way beyond the call of duty.

Thank you for being so gentle with Anthony, for liking him, for talking to him and listening to him.

Thank you for tolerating my uncertainty and ignorance of various rules, like signing in and out, coming in when there was a gastric outbreak, forgetting to fill out the satisfaction survey.

Thank you for your friendly smiles and greetings when you are rushed off your feet.

Thank you for putting up with my phonecalls to you when I can’t get through on Anthony’s phone.

Thank you for not minding our son Ming’s loud cheekiness.

Thank you for telling me that some of Anthony’s clothes were a bit shabby, to bring him socks that had treads on them, to bring him long pants (which he has always hated, but is now okay with).

Thank you for not minding when I accidentally interrupted your lunch breaks, or handover, or couldn’t remember the code to get out of the door.

Thank you for accepting that I can’t sew so all of Anthony’s clothes are labelled with a texta.

Thank you for not telling me to get lost when I wanted to help you help him with the toilet.

Thank you for so quickly realising I was not his daughter.

Thank you for telling me how disappointed Anthony was when I altered arrangements to bring him home.

Thank you for adjusting his phone, ringing me on his phone, recharging his phone when it was flat.

Thank you for making him feel safe, secure and fine at night now.

Thank you for tolerating the various doctors’ alterations of medications.

Thank you for the fact that Anthony thinks/knows you are all wonderful.

Thank you for being so kind to me too.

Thank you for not noticing that underneath my smile, my heart is ripped apart and the floor of my life is covered in the blood of loss.

Thank you for telling me I shouldn’t be lifting Anthony on my own.

Thank you for telling me that you had also noticed he was becoming more confused.

Thank you for talking to me, chatting to me, making me feel normal – making us feel normal – in a comfortable, cup-of -tea way.

There are so many more thankyous to you guys. I used to be an enrolled nurse and I mostly worked in nursing homes or with multi-handicapped people, so I know what you are all having to do to help Ants as he deteriorates, and I salute you.

So, thank you from my heart – all of you. I haven’t mentioned names here because I don’t know everybody’s names yet but I will work on that.

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