March | 2015 | jmgoyder

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!

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Mar 14

Lost and found 2
by jmgoyder

During one of my shifts in the nursing home the other evening, I was chatting with one of the carers who had come down to the dementia house to help with supper (in order to give the carer I was working with her own supper break). As we made the milos, and cups of tea and served the ten women residents, she chatted about how much she liked Anthony and loved working in his section (high care). She even described situations in which, when he was asking for me, she would quip, “Well I’m your mate too, buddy!” and they would share a bit of banter despite the fact that his retorts are now mostly whispered.

On the days when I am not on duty but simply sitting with Ants in his room, this particular carer will drop in and banter with Ants while I watch, happy and grateful that she, and many of the other carers, domestic staff, kitchen staff and supervisors, like him so much.

I have now told all of the staff to answer his constant question of “where is Jules?” with “Jules will be back soon.” This works quite well in covering the hours I am not there – early morning/late evening – but it probably wouldn’t work if I didn’t spend big portions of the daytime with him.

Anyway, I told this particular carer that he used to be a very loud, laughing, life-of-the-party bloke and she was amazed. I was a bit amazed by her amazement until I realised that of course he now presents as a very quiet, sleepy, incoherent, expressionless old man, diminished by the Parkinson’s.

Now that we are entering the fourth year of Anthony’s time in the nursing home, his physical deterioration is starkly evident however his ability to smile has come back! I am thrilled because for a couple of years there was no smile – not because he was unhappy exactly; it was more to do with his facial muscles not working due to the PD.

Around a year ago I made it my goal to make him smile every single day and I mostly tried this with banter, teasing, tickling, dancing, toilet jokes (sigh), and funny reminiscences. Well, this has worked! And the fact that some of the carers understand/intuit his need for banter, and play the game, is brilliant.

To see this beautiful man’s lost smile come back is the most amazing gift; it takes a bit of conjuring but it always happens and it is like magic to me! When I leave him to come home all of the tears I might have shed are absorbed into a great big grin.

Lost and found: Anthony’s smile.

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Mar 13

Lost and found 1
by jmgoyder

One of the most wonderful things about the last few weeks of decluttering the house has been finding things I thought were lost.

Dina, Ming and I have found a multitude of keys but the one pictured is rather important as it is the front door key. This is going to make getting into the house so much easier than climbing through the front window, which I actually had to do yesterday because Ming had taken the found key. As for the back door key, I am sure it is somewhere in the bowl of keys.

I have been telling Anthony a heavily edited version of this extraordinary decluttering experience by describing Dina as ‘the lovely woman helping me to spring clean the house for you.’ This works well because (a) despite being a bit of a wardrobe-hoarder, Anthony was, once-upon-a-time, an extremely organised person. He did all of the paperwork, milked the cows, looked after his mother, fondly known as ‘Gar’, and had various cleaning women in to help with polishing the silver and brass, wash the windows and, basically keep this beautiful old house in order.

Fast forward to now: As Dina and I opened the blanket chest in the spare room this week and I saw the amount of papers in there, I felt totally overwhelmed, caught between curiosity and cull mentalities. Without Dina’s help and presence, I would not have been able to cope but with her help, I was able to choose what to keep and what to throw away and, halfway through this process, I realised that these were Gar’s hoardings, not Anthony’s.

When I found a note, in Gar’s handwriting, to pay Juli (me) $60 from way back when I first came to work for her in the ’70s, I felt a bit of an emotional tug to either cry or laugh, so I laughed. Dina – always sensitive to how I might be feeling – gave me the pauses I needed to read out words written from one person to another on paper so fragmented that it sometimes fell apart in my hands.

Needless to say, much of this historical and sentimental paperwork has been put in a posterity box, including the love letter from Gar’s husband, Barr, which I thought I’d lost. More to say about these things at a later date. I still haven’t found a mass of gold (haha) but you never know!

Apart from all of this, it has been an extremely busy week in many ways so I have not kept up with other people’s blogs – sorry!

Oh yes and, now that the elusive parrots have returned, but absolutely refuse my offer of a photo shoot, I can tell you honestly that they are red-capped parrots. They are very shy of humans so I have decided to put a photo of the baby avocados instead (which the redcaps will probably eat anyway.)

It was a joy this week to catch up with a beautiful friend who I have know since school days, but with whom I had lost touch in a meaningful/nitty-gritty way. To find that we are still the friends we were, to share stories, wine and pizza, to exchange tears and laughter, to have reconnected like this – is a gift.

Lost and found; I salute you, N.xxxxx

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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.

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 5

Values
by jmgoyder

On Tuesday, Dina and I arranged all of the stuff I wanted valued onto two tables ready for the antique guy, Mike, to value and/or purchase. When he arrived, introductions were made and he got his little eye-magnifier-thingy out and began what ended up being over four hours of a fascinating adventure into the history and mystery of everything from chinaware to silverware to walking sticks to coins etc.

Every time Mike said “Oh, you know what this is?” or “Now that is beautiful!” I felt quite chuffed. As Anthony was/is an antique enthusiast and, to some extent, a collector, it was interesting to find out what the things he had bought, or we had bought together (prints/lithographs; a piano stool, the grandfather clock, coins/banknotes, a silver egg coddler, willow pattern china, a Gallopili photo, etc.) were actually worth.

As the three of us went through the wares, I wrote down what things might be worth and what Mike would pay me for items he was interested in. Anything chipped or cracked was either discarded or put into the garage-sale box; most of the silver-plated and brass goods were deemed low in value as nobody wants to polish anymore. Mike wasn’t interested in any of that so Dina and I put these items onto a separate table for me to sort out later.

Interestingly, it was the little tangled-up trinkets plus my grandmother’s collection of Royal Doulton teacup sets, that had more value than the bigger, more impressive-looking objects! I sold a few of these to Mike but kept this one (see the peacock?)

Family heirloomy stuff for Ming went straight into my now decluttered office at the back of the house; give-to-relatives stuff went into a couple of boxes; stuff to keep (because I love it) will go back into the living room; garage-sale things ended up in several boxes!

Call me mercenary but I had not wanted to give away or sell anything that might be worth a fortune so, thanks to Mike, I am now in the position of being able to give/sell things more cannily – ha! And it is almost a relief to know that none of this clutter is particularly valuable monetarily.

This means that I can now retrieve the objects that have/had sentimental value for Anthony’s mother, Ants, Ming, my own mother and father, and me … and put them back on display. I particularly like the silver and brass because I can remember polishing it with Anthony’s mother, Gar, and then with Anthony. I haven’t polished any of it for some time so will not take a photo until I have, but it is beautiful!

Towards the early afternoon, as Dina and I sorted things according to Mike’s valuations, I remembered to show him the coin I’d bought for Anthony in the Christmas of 2000. It is a one-kilo silver coin produced by the Perth Mint for the year of the dragon – absolutely beautiful and very heavy. Mike was impressed and suggested I do a bit of research into what it might be worth now (I paid $600AUS at the time).

Well, after doing a lot of googling and ebay-scouring and general research I found out that this particular limited edition coin is now worth up to $5,500! People appear to be selling them at lower prices than this, but it is interesting and rather wonderful to find that this random Christmas gift has turned into a worthwhile investment and I feel quite clever.

You should have seen Anthony’s face when I took the coin in to show and remind him, and tell him its value had increased so markedly. He actually grinned! Money does that to him.

Later that day, I was telling Ming about how it all went and he was a little nonplussed at my thrill. But, just as I was about to put Gar’s plastic tomatoes, which have hung in the kitchen for over 50 years, into the bin, Ming yelped “Nooooooo!” So they’re freshly washed and back where they were!

It is now the fifth week of my experience with Dina, who has helped me to declutter, reorganise and create space where there was chaos. I have discovered, in this process, that I can do such things without the anxiety of Anthony’s hoarding, my sentimental attachment to objects that just made me sad (eg. a pair of glasses once worn my my father), Ming’s fickleness. There has definitely been a bit of a power struggle between Ming and me but I have now reasserted my authority haha!

I have learned so much about the notion of value and it has got absolutely nothing to do with things. Of course I already knew that but the reminder has been wonderful!

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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!

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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.

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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