jmgoyder

wings and things

Mar 17

Best laid plans

by jmgoyder

It has been another extraordinary couple of days with Dina, my decluttering/organising friend. https://www.chaostoclear.com.au

Yesterday morning we tackled the wash house. For those who don’t know, in Australia, people used to have separate-from-the-house facilities for washing clothes, and out-houses for toilet matters. To my knowledge there was never an actual out-house here but the wash house is and I have never had a problem with going out the back door and into the wash house to do the washing. What I have had a problem with, though, is that this wash house’s washing machine has had to share its space with cupboards FULL of junk miscellaneous tools, ancient bottles of cleaning fluids, pesticides, methylated spirits, even old photos and jewellery, old boxes of shoe polish and brushes, funny little tins full of buttons, a multitude of rusty nails, screws, AND the enormous mess made by animal life attracted to the water I guess – lizards, goannas, rats possums, wild cats who tend to have their babies on the roof of the wash house, visiting snakes (possibly), and several years of dead leaves blown in daily because of course there is no door. After all, it’s a wash house! I am beginning to wonder if I am the only person in the world to still think this is a normal arrangement!

Anyway, in less than two hours, Dina and I cleared the cupboards, brushed all the cobwebs out, swept the leaves out and categorised things. Tools went into one box, rubbish into another, stuff for the Ming to decide about into another and we were done!

In retrospect, I am a bit embarrassed that while Dina did most of the dirty work of de-cobwebbing and brushing the walls, I mulled over objects like old hammers and wrestled with what was rubbish and what might NOT be rubbish. But in the end we sorted the stuff and put back the useful stuff and I was able to decide between rubbish and garage sale categories very quickly.

Dina has been sending me summaries, with before-and-after photos, every week, and I have become rather addicted to reading these because of how wonderful the ‘after’ photos are! To have made so much progress so quickly in decluttering and organising this house has been a mixture of exhilarating and exhausting but not once have I shed a tear of nostalgia; instead, I am rejoicing because finally, after three years of sorrow, this house is becoming the comfortable, orderly home it always was. AND for the first time for so long, I know where everything is!

This morning (and that’s where the best-laid-plans theme comes in), Dina and I met at the nursing home at 10am with the intention of sorting all of the hundreds of photos out. A couple of situations came up that prevented us from doing this in the planned time frame but we still managed to sort photos into labelled envelopes (‘family history’; photos Ants might be interested in – old cars, dogs, cows; my own family photos of childhood; and the Ming.) The latter subject – an over-photographed little prince from 1994 to high school – have been kept in photo albums in one of Anthony’s top cupboards to scan and turn into photo books at a later date. I took these photo albums into the nursing home a few weeks ago with that purpose in mind but also to remind Ants and it has been great looking through them from time to time.

It is several weeks now since I first discovered Dina’s service and it is probably the best decision I have made for the past three difficult years to solicit her advice and help. She does this magic trick of holding various things in her hands and asking me, “What do you want to do with these things?” And she always has boxes ready for the various categories – absolutely brilliant!

Thanks again, Dina. The space you have helped me to create in this house and in my mind has helped me (and Ming too I think) to begin to live in the future and not in the past.

Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Western Australia

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Mar 15

The Anthony book

by jmgoyder

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!

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

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Mar 8

Time, times, timing and a riddle….

by jmgoyder

From as far back as I can remember, I have had a problem with the seven-day week, its orderliness and its paradoxical unevenness – either Sunday to the following Saturday, or Monday to the following Sunday or any alternative combination. As a child this did my head in a bit and as for the 24 hours enclosed inside each of the seven days – well, we won’t go there. After all I failed high school maths, ha!

I would much prefer a Sunday to Sunday, Monday to Monday etc. arrangement but of course this would be impossible. Or would it?

As an adult, I still find days and times problematic if I am trying to accomplish something difficult (it used to be the writing of lectures to deliver at the university; then it was what day to do the washing; and now it is how many hours I can spend with Ants in the nursing home).

In wrestling with the aftermath of multiple situations, especially the traumatic ones, I have tried and failed several times now to get back to a normal week, a schedule, a routine, a way of fast-tracking a bad Monday into a hopeful Sunday – that kind of thing….

And earlier this week I thought I had successfully reinvented what my week would be. I had listed goals, routines, early morning meditations, bike rides, photo-scanning, photo-taking, writing ‘the book’, polishing the silver etc. and NONE of this happened!

Instead, I spent the week hugging Ants from time to time as we watched Luther, and, at home, hugging Ming from time to time as we watched Game of Thrones.

I now think it is impossible to reinvent the week. That whole seven day thing still does my head in. My preference now is for moments: Anthony’s unexpected grin; my Mama’s amazing pork with caramelised onions for dinner with my first nephew and his girlfriend last night; reconciliations with friends and relations; cheaper than usual watermelon; photos of my first great-niece, reading Elizabeth Jolley’s biography; picking the last fig today….

And the once-a-year blooms of the magical moonflower.
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1977
Anthony: Jules, come out and have a look at this!
Me: What? (amazed that he has taken my hand in his)
Anthony: The moonflower – only happens once a year, kid (removes my hand from his and looks embarrassed).

2015
Me: Ants I brought you two moonflowers, but they’re closing up already! I’ll get a vase.
Ants: You are beautiful, Jules.
Me: Really?
Ants: Just brush your hair.

Is it possible to reinvent what a week was? No.
Is it possible to fall in love again with someone whose disabilities made things difficult? Yes.
Is it possible to reinvent a week in a day-by-day way? Yes! It’s a bit complicated when you use a calendar or diary but an eight-day week, ten-day week (or anything you like) is entirely possible (I think!)

If the moonflower here only has one day of the year to bloom (as has happened here) then what the hell is it doing for the rest of the 364 days?

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Mar 2

Taboo topics

by jmgoyder

I am always very careful not to write details of our story on this blog that might embarrass Anthony. The taboo topics are to do with matters of the groin area: sexuality, ablutions, incontinence, libido, that kind of thing. These topics are not taboo for Anthony and me of course and actually provide us with some rollicking conversations in a slapstick comedy sort of way and some of his male friends who visit love to tease him about his past exploits (not me, I can assure you ha!)

One of the things that most amazes me when I watch various television shows/series is that no matter how long a particular character is trapped, or imprisoned etc. he/she never seems to need to go to the toilet (I think Nicole Kidman was one of the first do so in her last movie with Tom Cruise – not sure).

Anthony is utterly unembarrassed by incontinence and made me laugh my head off the other day when he said, “I hate having a wet nappy!” when I tried and failed to get him to the toilet in time at the nursing home. Unabashed, he said, “Those kids will help me soon” (he calls all of the staff ‘kids’ for some reason.

But even writing the above paragraph makes me worry that (a) this would embarrass him; and (b) that relatives and friends who read this blog might think this is ‘too much information’. However, whenever I present my worries to Ants and/or read bits of the blog to him, about him, including the above, he reassures me with his half smile. He has a very healthy ego! Libido is of course another taboo topic but the hilarity with which Ants has approached this now diminished capacity (“This is a gold bar”) is, I think, an important part of a story of extraordinary resilience.

I remember thinking, years ago, that if this or that were to happen I would not be able to cope any longer. I was right; when this and that happened, the nursing home idea saved us – our marriage, friendship, love.

If I write the Anthony book, I want to be honest about these taboo topics; I want to demystify them, make them less scary, put it out there for those who are going through the same kind of thing.

Off to the toilet now!

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Western Australia

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Mar 1

Writing

by jmgoyder

It has been a very long time since I have had anything published, which is probably due to the fact that it’s been a very long time since I have submitted anything for publication, which is probably due to the fact that it’s been a very long time since I have written anything new. Sigh.

Of course I realise that blogging IS writing and I am very grateful for the fact that I have kept some sort of written record of the last few years’ events via this blog. And I am also grateful for other bloggers’ support. However, I am frustrated with my writing self in that I STILL haven’t put together a manuscript about Ants and Parkinson’s disease. I have begun the process of copy/pasting blog entries into an manuscript but it is quite tedious work as I have to do this post by post by post, get rid of the photos and ensure the dates are correct. I’m doing this but am still in 2012!

And now that I am spending many hours of most days in the nursing home, where this kind of job is impossible due to internet connectivity and my own iPad ignorance, I find myself slackly watching series with Ants, and always quite tired! Not that this time with Ants is wasted; it is brilliant to be together but when I began to do a crossword today (for me this is what old people do – no offence to older readers) I realised that I had to make better use of this time than pass it in such a passive way.

So, I am going to retrieve the notebooks from the top shelf of Anthony’s cupboard and begin to type our conversations out (the ones I began to jot down before he became so quiet). I can do this on either the iPad or the laptop as neither will require the internet.

I can easily put aside all of the things I don’t do very well: photography, acrobatics, raft-building, gardening, cartooning, etc. etc. because I know I can do one thing really well and that is writing. I want so much to write something meaningful and moving and encouraging for those who are afflicted with Parkinson’s disease, and those who care about them/for them. I want to write unsentimentally about the pragmatics of hope and care and comfort, beginning with Anthony’s story.

Writing.

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The irony of my one and only published book (about Alzheimer’s disease) is that I had no idea, at the time, that my own husband would one day look at his windowsill and ask me to get the dog out of the room.

http://www.fremantlepress.com.au/books/1039

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Feb 9

I can’t do this until I do that!

by jmgoyder

IMG_4241

You know that feeling that you can’t do something you need to do until you do something else first? For example, here are some conversations with myself over the two-and-a-bit years since Anthony went into the nursing home:

– I can’t have people visit until I clean the house from top to bottom;
– I can’t go on a diet until I have eaten all the cheese;
– I can’t sort my old paperwork until I have sorted my new paperwork (well I think I have a point there!)
– I can’t turn over a new leaf until Monday because Monday is a good day to turn over a leaf, or perhaps Sunday if the date is not an odd number (a little bit of OCD?);
– I can’t do the washing (laundry) until I find it;
– I can’t get back in touch with that old friend until I find all of her emails to me that I didn’t answer, and answer them.
– I can’t get a decluttering service to help me until I do some preliminary decluttering by myself (yes, this has worked to some extent);
– I can’t make healthy smoothies until I have the ingredients to make healthy smoothies with;
– I can’t write anything new until I sort out all my old writings (in case I find something potentially brilliant that has publication potential);
– I can’t blog until I’ve read everybody else’s blogs;
– I can’t have fun until I have solved all of the problems in my life and the world;
– I can’t think new thoughts until I have figured out all of the old thoughts;
– I can’t breathe easily until the person I love can breathe easily too (literally and figuratively);
– I can’t cook a beautiful meal until I feel hungry enough to do so;
– I can’t quit my old bad habits until I develop a comprehensive list of goals for new habits and that will take me a year or so;
– I can’t go back to work in any capacity until I am happy;
– I can’t get up early in the morning until I want to get up early in the morning;
– I can’t re-friend that person until I figure out why we became estranged;
– I can’t pick the figs until I figure out how not to be bitten by hundreds of ants;
– I can’t read this novel until I’ve read that novel….

These excuse-ridden conversations with myself go on and on and on and, even though the above conversations are somewhat tongue-in-cheek, all of the ‘can’ts’ and ‘untils’ have culminated in a great, big “I give up!” feeling of absolute hopelessness.

I kind of figured this out this morning as Dina (from Chaos-to-Clear) helped to declutter the back veranda which was crowded with boxes and crates of Ming’s baby toys, legal documents, empty diaries, sentimental quotes, letters, postcards, a lot of photos, and a multitude of bits and pieces. She and I could both see how I had obviously tried from time to time to organise all of the ‘stuff’ but I had to swallow my embarrassment at all of this spider-webbed clutter!

This is a photo of before Dina arrived:

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It took around four hours to clear/sort/discard/box up/categorise most of the veranda stuff and at 2pm we stopped and I looked at what we had done. The feeling of freedom and elation was indescribably good. And then that feeling was trumped by the feeling of hope!

And it is only now that I see, in retrospect, that I must have been in a state of absolute despair, to let the house and its contents get the better of me in terms of clutter! Of course this was not just because of Anthony going into the nursing home (that was terrible enough) but all of the ghastly other stuff that happened in those two blurry years – Ming’s surgery, my mother’s broken bones after falling twice, the car accident which I can hardly bear to think/talk/write about despite the fact that everyone survived.

I have written about all of these things in past blog posts but I am reluctant to re-visit those posts because….

– I can’t re-visit all of this painful stuff until I learn how to stand up straight and tall and and smile at the monster!

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Note to Ming: I promise not to go to the dump with the rubbish until you get back from your holiday. We shook hands about this so please trust me! (This deal he and I made is another story!)

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Jan 10

Everything (a poem)

by jmgoyder

When you are inside the blah balloon
floating above the world,
tossed about by moody winds

you can see everything, EVERYTHING
up, west, down, left, north, right, east, here, south, and, yes, there too!

And in between all of the circumferences, you have
a clear, detailed view
of the whole wide world, but

from the blah balloon, your view is distorted
by plastic
and motion sickness
and fear of falling.

So what do you do?
Do you stay inside your safe, up-in-the-air balloon
dizzy
disorientated
upset and shocked that in the whole wide world
you are absent?

Or do you scream triumphantly,
pierce the wall of the balloon with your un-rude finger,
fall to the ground with a THUMP

stand up,
walk,
smile

EVERYTHING

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Jan 9

Anthony book 1: Three years

by jmgoyder

January 9, 2015

This week marks the third year that Anthony was admitted into the nursing home for respite and never came home again.

Except to visit. The shock of it.

This is what I wrote in my blog at the time:

Jan 11 2012 Breaking

Yesterday, Son and I broke the news to Husband that his two weeks in the nursing home lodge might need to be extended, might even be indefinite and that this has been recommended by three of his doctors. Son reinforced this by starting a verbal sparring match:
Son: We can’t look after you anymore, Dad!
Husband: Well, you’re not much of a son, are you!
Me: C’mon, guys, give it a rest.
Son: Dad, can’t you see you need nursing care?
Husband: I’ll get better – wait and see. Don’t give up on me. Where’s my wife?
Son: Her name is Julie, Dad, and she’s crying in the bathroom as usual.
Husband: What the hell is she doing that for?
Me: Sorry, just had to go to the loo.
Husband: Are you okay? You look terrible. You really need a haircut.
Me: I know.
Son: Argh – I’ll meet you out in the car, Mum. Bye, Dad.
Husband: Wait – give me a hug.
Me: He’s okay; he’s a teenager.
Husband: Why is he so ….?
Me: He’s angry.
Husband: I love you two more than life.
Me: Us too.
Husband: You better go.
Me: Yeah, the brat’s waiting – give me a hug.
Husband: See you tomorrow?
Me: See you tomorrow.
Breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking…. br

Perhaps it is this strange anniversary of almost unbearable emotional pain that has rendered me numbly bleak (bleakly numb?) over the last few days.

Lately, the shiny wonder of having discovered different ways of happily being in the nursing home for so many hours per day with Anthony has begun to show its first lace-like signs of rust.

I AM SO BORED!

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Nov 17

Un-planning Christmas

by jmgoyder

Somebody said to me the other day, “Surely, you’ll bring Anthony home for Christmas,” and I felt sad as I tried to explain how this might not be possible.

I have spent a lot of hours on the weekend and tonight looking back on my blog posts to try and find the last date that I brought Anthony home and I think it was March 16, this year, which makes it almost exactly eight months.

So, on Christmas Day, Ming and I will open our presents to each other in the early morning, and then we will meet my mother at noon so that we can have Christmas lunch with Anthony at the nursing home. Or maybe not!

Un-planning!

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Nov 11

The new smile

by jmgoyder

For the love of smiling!

I took a photo of the avocado tree a few weeks ago and posted it on this blog, bragging about its amazing blossoms. A few days later, on climbing the tree to pick one last unreachable avocado, I got a bit tangled in the blossoms and, in untangling myself, realized they were actually the blossoms from an adjacent plum tree. I haven’t wanted to admit this until now because I am so embarrassed. I am quite sure all gardeningy people spotted my error but were kind enough not to say so. Anyway, it’s not my fault that the plum tree (or whatever it is) keeps throwing its pink-blossomed arms around the avocado tree!

I was overjoyed to spot a little peachick on the roof of the shed adjacent to the chookyard and I had a rather long conversation with it until I realized it was a twig!

I love to tell these embarrassing little funny stories to Anthony because it gets him smiling. Some time ago, it seemed that he would never smile again – not because he was sad but because the Parkinson’s has affected all of his muscles, including facial. But over time, I have learned how to elicit a different kind of smile; I use banter, loudness, crudeness and lots of vigorous hugs.

His loud, spontaneous, contagious laugh has gone and so has his loud voice as he now speaks in a kind of whispery way but I am ungentle and say things like:

Speak up, Anthony, clear your throat!
You look like a dead duck today!
Wake up!

Sometimes I catapult myself into his room, throw my arms around him and he gets such a shock and always says, “Jules, how did you know where to find me?”

Or, if he is having a bad day with forming words, I just get his beautiful new, slow-growing smile. And when Ming enters the room, Anthony’s smile gets a whole lot quicker!

Note: Avocado trees do not have pink blossoms!

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

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