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Jigsawing Parkinsonisms

by jmgoyder

When most people think of Parkinson’s disease, they think of dyskinesia which is the involuntary movements, tremors and tics that are symptomatic of the disease. Anthony’s version (called ‘Parkinsonism’) is not like this. Instead, his disease is characterized by bradykinesia – the chronic slowing down of movement.

Big words to match small, sometimes unnoticeable, symptoms. To begin with, many years ago now, I deliberately tripped over these words and many, many more – like ‘idiopathic’, ‘hypokinesia’, ‘ataxia’, ‘dysphasia’, ‘mirographia’, ‘akinesia’, ‘palilalia’ – just as Anthony was undeliberately tripping, literally, over his own feet. I didn’t want to know what those words meant back then; I didn’t want to know what was coming. The glossary below is for those who are curious:

http://www.webmd.com/parkinsons-disease/parkinsons-glossary

The first signs were subtle like Anthony’s inability to open the vegemite jar, and his reluctance to drive the car. But then the signs became more dramatic: Anthony’s increasing stoop, strange gait, the drooling, getting stuck in the back yard and being unable to walk back to the house, the hallucinations, me coming home from the local shop to find him face-down in the vegetable patch, Silver chain home assistance, hospitalisations, drug experiments, nightly toiletting shifts with Ming, Anthony’s apologies, his gradual loss of control over his body, his shame and frustration….

All of these things jigsawed into each other crookedly, violently sometimes; we could not get the jigsaw back together again no matter how hard we tried, because already there were too many pieces missing. A simpler jigsaw needed to be built and learning what those many big words meant has helped frame the centre of this new jigsaw, the centre being Anthony himself of course, and his incredible resilience and acceptance.

One of the most wonderful things that has happened lately is that just when I thought Ants had become totally immobile, the staff told me that his nephew, P, visited on the weekend and Ants was able to use his walker to go outside into the sunshine with P. This nephew visits Ants every weekend, but he doesn’t do this out of duty, he does it because he loves Anthony (and I have yet to meet anyone who doesn’t).

Another wonderful thing is that just when I thought Ants had completely lost his ability to speak coherently, I arrived and rushed to give him a kiss yesterday and he smiled his newfound smile and this was our conversation:

Anthony: You are a wonderful person!
Me: Why?
Anthony: Well, you always find yourself in the most extraordinary places!
Me: What – like here?
Anthony: Yes! You always find me, Jules!

The fact that Anthony’s eloquence, mobility and ability to smile all seem to have come back to some extent, after a long period of struggling with all of these things, is quite strange. I write down all of his extraordinary sentences and am thrilled when he can actually walk; as for the smile, it is almost as if my determination to get that brilliant smile back via any means – including slapstick antics, banter, his favourite comedy series, and just laughing my raucous laugh – has somehow tickled his facial muscles into action again. And, like any exercise of any muscle, the more Anthony smiles, the more able he is to smile. Ming has noticed this and so have the staff and everyone is surprised and delighted.

Does this mean Anthony is getting better? Of course not, but it’s a very interesting turn of events made even more interesting by a conversation I had with a resident whose room is two doors away from Anthony’s. She beckoned me over to where she was sitting in her wheelchair and whispered loudly, “I’ve heard a rumour that Anthony is getting most of the attention these days and is the most popular, but don’t let it bother you because we are all treated well.” Then she guffawed enigmatically and I have yet to decode what she meant.

The other day I told Anthony about Gutsy being killed and he kept reaching out his hand to put it on top of mine.

Over and over and over again – his hand, found underneath the blanket that is always on his knees, and my hand bringing his out into the cold air of a heated room, and his hand finding my hand – a jigsaw of interlaced fingers, a smile, a repeated hand tap.

But, when I was telling Ming about this tonight he said he’d seen Anthony earlier today and Anthony was so confused and blah that he almost didn’t recognise Ming!

Ming: I get it with the smile thing, Mum, but Dad was pretty bad this afternoon.
Me: So should we give up then?
Ming: No!
Me: No?
Ming: I don’t know.
Me: I don’t know either.

The above is not an exact rendition of our conversation but, rather, a compression of many conversations over many months/years. Ming, at 21, is always going to be the vital jigsaw piece that has the elasticity to fit right back in and complete the puzzle, or else wing to and fro.

Par
kins
on
ism
saw
jig

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The loss of Gutsy 9, our pet peahen

by jmgoyder

The evening before last, Ming found Gutsy 9’s body just in front of his shed. He came over to the house to tell me that he wasn’t quite sure that it was Gutsy but he’d taken the body to the woodpile. He had two friends over to stay, so he said they would leave me alone and they retired to his shed.

Once the boys had gone, I did the crying thing, then I took a torch and went out to the woodpile, but I couldn’t find her, so I came back inside and cried some more. I felt bewildered, because, despite the danger of wild foxes, the peafowl have always ranged free because they can fly up and away. Our dogs, too, had become so used to their presence that they would drink from the same water trough.

I will never know what happened that evening, or how it happened, but at dawn yesterday I went over to the woodpile and there she was – her crooked left foot and her white feathers making it easy to identify her body. I picked her up, but couldn’t find where she had been wounded; her eyes were closed and her neck flopped against mine in a last hug.

As a pied peachick (half white, half blue) G9 was rejected by her mother nearly three years ago, so I raised her, and we all loved her. Just the other day, we had some visitors and I picked her up and put her on my lap and she purred her unique hello.

I feel absolutely devastated, but am now beginning to appreciate G9’s fantastic presence in our lives … in retrospect – my beautiful bird.

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Born with a silver spoon ….

by jmgoyder

Today is my first niece Ashtyn’s birthday and in around five weeks she will give birth to her and Gordon’s first child. So on the weekend there were numerous celebrations – a mother blessing ceremony, a baby shower, and a birthday party.

Ashtyn is gifted with the ability to be the star at every family gathering without even trying. Her birthday invitation read “The Most Important Day of the Year!” And her favourite present (given by her sister) was a selfie stick which was put to much use that day.

At the baby shower, my mother, “Grandma” now to eleven grandchildren and one great-grandchild, gave Ashtyn two pictures that she had hand-embroidered over the last few weeks, then had framed. She’d told Ashtyn that if the baby were a boy, she would have the angel picture back for another occasion, and if the baby were a girl, she would have the train picture back for the same reason. Ashtyn’s response: “No way! I’m keeping them both.”

I haven’t included the numerous pictures taken of the rest of us because, well, I didn’t want to detract attention from Ashtyn haha!

Anyway, in all the decluttering of this household, I had already found several silver teaspoons and I remembered that Ming had been given one at his christening. So I sorted through the good ones, found a matching spoon and fork, polished them up and then found a suitable box.

I was so excited about this gift for Gordon and Ash’s baby that I did a bit of research into the whole silver-spoon-in-the-mouth tradition and was delighted to find that using silver cutlery is a lot more healthy and hygienic than other materials. Who knew!

Ashtyn is an absolute joy of a person to be around; she is totally, unselfconsciously, gregariously, generously beautiful. I am so proud to be her auntie and can’t wait for all of the mother-and-baby selfies!

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Thank you, Jill

by jmgoyder

In all of the decluttering and re-organising of this household/farm I have made some wonderful friends like Dina (Chaos to Clear), Mike (antique valuer from Australind Timeless Wares and Collectibles), and now Jill and Ray (from Dardanup Heritage Park and Museum). I’ve already provided links to Dina’s service and will do so for the other businesses once I obtain their permission.

I have sold some things to Mike and, this morning, a ute-load of ‘goodies’ from the sheds to Jill and Ray. Jill, whose late husband, Gary, began the heritage enterprise some years ago, now runs the museum with employees like Ray, and a team of volunteers. She is a delightful woman whose enthusiasm for some of the objects was contagious today. Jill likes items that can tell a story and this, to me, is invaluable and I feel privileged to be able to contribute to the stories her museum tells.

Ray, a big, strong, no-nonsense sort of man, single-handedly lifted everything from milk cans to a marble-topped vanity, to an old ice chest, into the back of his ute. Ming and I helped of course but we were distracted by the fascinating information Jill and Ray shared about each of the smaller bits and pieces. And I was able to provide some history of this farm to them too because I knew a bit about Anthony’s family’s predecessor from what Anthony has told me over the years; I also knew various dates.

Anyway, after the ute was full, we had a coffee break and I showed Jill some of the inside-the-house stuff – the hat box full of hats; the roll-top desk; an antique mirror; an old singer sewing machine, the old print we found in one of the sheds etc etc. and bits and pieces of very nice, but chipped, china. Just as we’d done with the shed contents, we agreed on prices for some things and I donated others.

Here are some pics of what will now be at the museum. I am going to be allowed to write something about Anthony’s history which will be displayed in the dairy section of the museum with the milk cans. I raced into town this afternoon to tell Anthony that, if he sold some milk cans to the Dardanup Heritage Park, he would go down in history because I would write something about him.

Anthony: How much money?
Me: Heaps!
Anthony: We need to check with xyz.
Me: Rubbish, Ants – they are your milk cans!
Anthony: Okay….

Okay so I am making some money from this massive cull, but I am also making friends with some really knowledgable people who know the difference between silver-plate and sterling silver (surprisingly difficult to tell sometimes); antique and just plain old; rare and common. I don’t even think Anthony would have known what was in the sheds; after all, he came here at 23 and proceeded to milk cows nonstop for decades.

The most hilarious thing that has happened so far is to do with the old copper washing machine that the heritage people were interested in. I got some advice from someone who said it could be worth $1,000 so I emailed Jill a couple of weeks ago with that quote and she didn’t reply so I got all paranoid-worried and apologised if the price seemed inflated. I subsequently got advice from Mike that it would only be worth $200 max. How embarrassing! But today, we all realised that the stupid copper was cemented to the floor of the wash house so would be impossible to retrieve anyway. Lots of laughs!

Me: Do you want me to get the Dardanup Heritage Park people to come and have a chat with you about the past?
Ants: With Ming too?
Me: Yes.
Ants: Good idea, Jules.

I am not sure how the same heart can splinter but still sing at the same time. This describes my paradoxical experience of the last several weeks since my decision in January to tackle the enormous job of decluttering, selling, finding, giving, keeping, organising over a century’s worth of stuff.

It isn’t over yet; there are still the old photos and documents to get through but it is a beautiful thing to have clear spaces that hold their history inside the dust of imagination.

Thank you for today, Jill – thank you for the hug.

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Autumn

by jmgoyder

My clouds hug the sky

cockatoos caw out their joy

and the rain giggles.

Just a little haiku to celebrate our autumn. Every evening when I leave the nursing home, I drive past a spot on the edge of town where hundreds of white cockatoos fill the trees like giant snowflakes, and create a raucous cacophony. They are so loud, it can be alarming if you don’t know what the noise is but I love it! I am not quite sure why there are so many in that particular spot as there are none on the farm; there are plenty of other parrots here but not the white ones. Interesting. Well it is finally raining and the brown paddocks will soon be green again! The faltering wormwood will come back to life, the five acres of lawn will need mowing around the house and everything that looked dead will be reborn (okay, except for most of the roses!) The wormwood hedge stretches from where the house is right back to where Ming’s shed is. I remember the days when Anthony trimmed it, then the days when Arthur trimmed it, then the days when Ming said he would trim it, and the days when I thought about trimming it, but, alas, all of those days are gone. Autumn seems a good time to take another blog break so that I can concentrate on some other projects including applying for a job as a behaviour consultant with a local Alzheimer’s Disease organisation. It might happen and it might not but it would be a wonderful opportunity to share some of the lessons I have learned about dementia and communication over the years, including what is happening right now with Anthony and me. It is very hard to see someone who used to be the life of the party reclined crookedly in an armchair in a nursing home. It is also very hard for me to find the words to adequately express how much I love this man, my husband, Anthony, without resorting to cliches. Hence the concluding haiku:

My sky hugs your clouds.

The birds are oblivious.

You hold my small hand.

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On realising why I woke up miserable yesterday morning when I should have been happy ….

by jmgoyder

Yesterday evening I suddenly realised why the morning had been so blah, and the reason for this is going to sound absolutely ridiculous. But here goes:

The day before yesterday, Dina, from chaostoclear.com.au, came over for the final big job here – Ming’s extremely cluttered (but otherwise beautiful) shed that Anthony and I had renovated for him several years ago so that Ming could have his own space and some independence. Here are the before-and-after shots:

After Ming’s shed was done (Dina never stops until it is done!) and we all had coffee and a chat, Dina hugged us and left but, even though I knew we would see her again after the holidays, I felt bereft! Maybe that is what happens when a problem is resolved? You find yourself in an enormous cavern of space (and for me this was both literal and figurative) in which you feel strangely lost.

Thankfully I woke up this morning in a much more appropriate mood, extremely happy with what we have accomplished, and full of incentive to maintain the new order of things. The garage sale is something I need to advertise pronto and I am really looking forward to this as it’s a wonderful opportunity to cull everything from old blazers from my university days, to old bicycles, to Ming’s lego, to bric-a-brac, to books etc. And now that I’ve met the Dardanup Heritage Park people, I have a good idea of what they might want so I will donate some items and sell others. One of the things that appealed to me about their museum’s philosophy was the way in which they enjoy displaying objects in a way that tells a story of the past in a personal way.

Here are some of the items that will go to the museum:

Anyway, back to the strange sense of misery I felt yesterday morning: it is probably due to the exhaustion of being so driven to declutter; the extraordinary success of doing so which still seems miraculous to me (I could never, ever have done all of this without Dina); and the incredible journey back in time to an era preceding Anthony and even preceding his mother, affectionately known as ‘Gar’. Strangely, the moments of nostalgia I’ve experienced during the last several weeks of this adventure have mostly been due to memories of Gar and her stories about her own past shared with me over coffee and timtams or else a gin and tonic. She was a pivotal figure in my young life, this 83-year-old woman who commanded the whole household and dairy enterprise with a slight wave of her formidable walking stick, and encouraged my teenage heart in its infatuation with her son, Anthony. On her deathbed she said (after a couple of days of not saying anything and I know this because I was there), “Look after Anthony.” And I have, just as he has looked after me.

When I began this post, I thought I had a simple answer for yesterday morning’s misery but now, having written it out like this, I can see clearly why the whole adventure with Dina has been so cathartic and yet so bittersweet but, ultimately, absolutely beautiful.

I had to go back in time in order to go forward in time. So many memories, and artefacts of other people’s memories, have touched and intrigued me and now, with Dina having finished the big jobs, I have time and space to reflect, pause, re-imagine! Hindsight thoughts are particularly interesting.

Oh shut up, Julie, and go to bed!

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Going, going … gone!

by jmgoyder

Here are some ‘before and after’ photos of the inside of the two sheds that Dina, her assistant and I cleared the other day:

Shed 1:

Shed 2:

I asked the lovely woman who runs a local heritage park/museum to come out this morning to see if any of the bits and pieces were of interest. She arrived with the man who helps manage the park and they inspected the ‘goods’:

After some mulling and very interesting chats about what some of the once-upon-a-time objects were, the heritage park people picked out a few items of interest for which they were willing to pay, then, with the Ming’s permission (of course!) took most of what you see in the photo away and gave us double the price we would have received from a salvage yard. Brilliant!

At the same time, Dina was here for her last big job with us which was to finish decluttering Ming’s shed/home. Unlike the other day, with the filthy-old-sheds-job, she didn’t have to wear her astronaut costume.

At the conclusion of Dina’s work with Ming today, we chatted over coffee and were all a bit sad that this massive job had more or less come to an end. Now that she’s finished, I feel a bit lost in the ghostly space of things gone, not because I miss the things but because I am going to miss Dina’s regular visits and the euphoria of getting so much done!

One of the most interesting aspects of her service is her summaries and here is an example:

Goyder Services Summary Veranda & Kitchen PDF

I now have several of these summaries that span the two mornings per week, over two months, in which Dina has helped me to move forward. The ‘before and after’ photos in these summaries, and the summaries themselves, are a unique part of her service and a source of joy to me!

Going = rubbish tip (around ten ute/truck-loads now!);

Going = given/sold to interested people/family;

Gone = the feeling of being overwhelmed!

Thank you Dina – ps. Can you help me with the odds and ends left from our work so far?

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Treasure hunting!

by jmgoyder

Just behind the flowering tree is one of two sheds that is was full of rusty tools, abandoned bookcases, paperwork covered in fly-poop/rat-poop, the occasional photo, bits and pieces of a long time ago – well before my time here on this farm and probably remnants of before Anthony’s time here too.

The two falling-down sheds contained objects from a long-ago era; one also contained asbestos. Then there is the little house we call ‘Arthur’s hut’ because he was Anthony’s dairy hand for decades and was the last to live there.

Today, Dina and her assistant donned protective masks and suits in order to clear all of the bits and pieces from the two sheds, and the hut, so that I could categorise them.

The three of us worked almost nonstop for six hours and we did it! We cleared all three buildings and I am astounded because I thought it would take days! I am sitting here now, filthy and exhausted and sneezing from all the ancient dust, feeling absolutely euphoric.

We took three enormous ute-loads of rubbish to the dump, once I had decided what was trash. ‘The Ming’ was conveniently at work and, as he rarely reads my blog, he will not need to know about those three ute-loads because we have left enough of the keepable clutter outside for him to check out.

Now all I have to do is to sort through a few suitcases full of miscellaneous papers, books and photos (from well before I was born – Anthony first came here with his mother and younger brother when he was 23); sort the scrap metal from the collectible metal; and decide what to do with memorabilia that family members might want.

The above photo is of the first shed we cleared. It was a very difficult job as the floor is collapsing as a result of rabbit warrens.

History is a weird thing: it can hurt you, or heal you, or humour you. I plan to take a box-full of the more interesting relics into the nursing home to show Anthony next week.

The garage sale has now been postponed until I do the remainder of sorting, but I am nearly ready to advertise it – hurray!

Many thanks again to Dina and to her wonderful assistant for the miracle of today!

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Priorititis

by jmgoyder

Ming and I have very different priorities which is not unusual in a mother and son relationship. This means that he has had a rather bemused, and sometimes annoyed, attitude to the last few weeks of what I have decided to call my “house to home” project. And, due to his man-of-the-house attitude we have had a fair few power wrangles.

So I didn’t tell him that I had booked a lovely couple who run a business called ‘Household heroes’ to clean the windows inside and out. When I accidentally let it slip that they were coming on Monday, he became angry and this was our rather fraught conversation:

Ming: Why didn’t you tell me?
Me: I thought we agreed last week that I was the boss.
Ming: Well, why didn’t you ask me to do the windows? I should be doing it!
Me: Because you’re working full time and actually I think I did ask you.
Ming: No you didn’t!
Me: Well, maybe I hinted that we could do it together?
Ming: Why don’t we then?
Me: So do you want me to cancel the window cleaning people and we do it ourselves tomorrow?
Ming: But tomorrow is my day off! I want to have fun!
Me: In that case, could we do it together next week?
Ming: What’s your problem with the windows anyway, Mum?
Me: They’re dirty.
Ming: So?
Me: I want them to be clean.
Ming: Why?
Me: Because they always used to be clean and now they have been dirty for three years!
Ming: So?
Me: Okay so you want me to ask you to help me with the windows but you don’t really want to and you don’t care that the windows are dirty?
Ming: I don’t care at all!
Me: In that case, I won’t cancel the window cleaners, okay?
Ming: Fine then!

Yes, Ming and I have quite a lot of these circular conversations but, in the end, we can usually stifle our different priorities in order to watch Game of Thrones in the evening.

So the window cleaners came on Monday and did the most fantastic job over nearly four hours, Dina and I decluttered the wash house at the same time, and Ming skedaddled!

The following photos are not remarkable in themselves; what is remarkable is that they are all taken through clean windows. Hurray!

The thing is, I do understand Ming’s feelings of alarm at all of this tidying up because I guess he has become used to a mother (me) who has been sort of stuck for so long that he has forgotten the lightning speed with which I used to get things done – ha!

And tonight he is making dinner for me! Hopefully this will become a new priority for the Ming – gotta love him!

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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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jmgoyder

wings and things

Jigsawing Parkinsonisms

The loss of Gutsy 9, our pet peahen

Born with a silver spoon ….

Thank you, Jill

Autumn

On realising why I woke up miserable yesterday morning when I should have been happy ….

Going, going … gone!

Treasure hunting!

Priorititis

The Anthony book

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