jmgoyder

wings and things

A sublime sense of space

Dina, from Chaos to Clear https://www.chaostoclear.com.au/gallery.html came over this morning to help Ming tackle this:

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Some of the stuff in this particular area was paperwork that I either didn’t know what to do with, didn’t recognise, and didn’t even remember putting there. But most of it was Ming stuff – lego (and lots of it!) brio trains and tracks, and a whole lot of other ‘things’ from Ming’s childhood. As this was Ming’s first experience of decluttering his own stuff with Dina, it was interesting to see his initial reluctance transform into a very healthy ruthlessness and we filled four garbage bags and two boxes with rubbish to be taken to the dump – wonderful! It was also quite moving to see what he was still sentimental about:

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While this was happening, I sorted all of my plastic containers, got rid of all my old cook books and only put the Aga cook books in the kitchen drawer, and put all of the paperwork we found into the filing cabinet that is now functioning as a proper filing cabinet thanks to Dina’s labels. Bliss!

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For me, the sense of space that has been created is the most wonderful thing! I have never known a cupboard, shelf or drawer in this house to be empty before so I am having a lot of fun thinking about how I can use these empty spaces. Wonderful!

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And this is the beauty of Dina’s service; she helps you to cull, but she also helps you to put the things you want to keep back into the new spaces. Dina is way more organised than I will probably ever be, but she has given us such wonderful help and tips and sympathy!

She has also given us her friendship and is even happy to come and help me take Anthony out on occasion. Thanks again, Dina, for your tact, efficiency, respect and empathy. You are a wonder!

We even have a box of stuff to go into the nursing home.
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Miscellaneous

One of the things I have had to do in all of the recent decluttering is to toss some things into a miscellaneous box to be figured out at a later date. Despite the fact that this box is getting rather full it is good to know that I have one place to put anything that I don’t recognise. I will hold the object out to Dina and say, “Do you know what this is?” (Usually it’s some sort of ancient tool – an artefact from Anthony’s past). If neither of us can figure it out, it goes into the miscellaneous box – perfect. Then it’s over to ‘the Ming’.

I thought it might be quite fitting to write a bit of a miscellaneous post, having discovered that ‘miscellaneous’ is a definite, and quite acceptable, category. So here goes:

Most of the grapes are ripe now and I can just pick them and eat them whenever I go outside. I think it’s just the one vine and the wild birds get to them as fast as I can so there is almost no point picking them. They grow just outside the back door and I’m not sure if Anthony planted them or if they were there before the family came here.

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The figs are nearly finished for the year as the heat is getting the better of them – and the butcher birds (which Gar, Anthony’s mother, used to hate). Last year I just let most of them fall of the tree and frizzle in the sun but this year I have given many bags away to friends, family, the local pub, the restaurant where Ming works (my mother and I went there today for lunch and the fig and coconut muffins were a hit), neighbours etc. I have also eaten quite a few with Ants in the nursing home. I also went to another restaurant and asked if they wanted figs and they said YES and I asked what I would get in exchange, suggesting a lunch voucher and they said yes to that too, though a little less enthusiastically.

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After lunch with my mother today I went in to the nursing home to spend some time with Ants before my 3 – 7pm shift in the dementia house. I had my camera with me so took some photos through his window of the outlook from his room. This garden area – one of many – is where he often ‘sees’ calves and often asks me to go out and check if they are all okay, which of course I always do and the calves are always okay.

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Periodically, I rearrange or change the pictures on his walls. The photo of younger Anthony has pride of place very high on one wall where there happened to be a hook and he rather likes looking up at himself!

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Me: You really like looking at yourself don’t you! Such vanity, Ants.

Ants: Men need to love themselves.

Me: Why?

Ants: In case nobody else does.

Okay I am kind of cheating here as the above conversation happened over a year ago. Ants doesn’t articulate so well anymore but he sure as hell likes looking at the photo and so do I. It kind of pulls us both into the time warp of when we first met.

Then there is the oil painting of cattle that I commissioned from an artist friend years ago; a calendar my mother made of moments/months in our lives (e.g.. Ming recovering from his first spinal surgery); and one of the few photos of Anthony and his mother in her latter years, that I had framed for him once upon a time.

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Then I took a picture of the rose plant I gave Ants not long ago. Everybody has remarked on their blooms and many people, including Anthony, thought they were real until I finally had to own up to the fact that they were VERY expensive fake roses made of silk. Some people are still fooled though, especially when I spray them with rose perfume – haha!

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Well now that all of the ancient rose trees on the driveway of the farm are either dead or dying, the fake rose tree seemed like a good idea. In my defence, I am hopeless at gardening and every time I water something the pump makes the electricity bill soar!

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Just before 3pm, after watching Judging Amy with Ants, I went into his bathroom and quickly changed out of my t-shirt into my new uniform, put my name tag on and explained I was going to work. He always only remembers a bit of this new situation so I have to explain again that I am not going somewhere else but will be working just next door and that I might be able to see him a couple of times during my shift. This reassures him and whenever he gets anxious I just tease and tickle him into his new half-smile and all is well.

This afternoon it was a bit too humid to take many people for a walk outside or through the complex and it wasn’t until I took a teary S for a wheelchair walk that I saw Ants again (just as I saw many of the people in the high-care section as S and I did a lap of the gardens and hallways).

S. Who’s that old chap?

Me: My husband.

S. Not bad-looking!

Me: Keep your hands off him, S!

S. (chuckling and sticking her tongue out at me) All right.

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Miscellaneous….

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From panic to pause….

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!

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Anthony book 1: Three years

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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What a strange Christmas!

On Christmas Eve, I sliced the ham and put it into a sealed container in the refrigerator, ready for Ming to bring to my mother’s place in the evening, then I went to the nursing home. Ming was working at the restaurant and planned to come home, shower and change and head to my mother’s while I spent the afternoon with Anthony.

Just after I got to my mother’s at around 6pm, Ming rang and said he was sick and had been vomiting and didn’t think he could come.

“But what about the ham?” I shrilled unsympathetically.
“Mum, I am really sick!” Ming exclaimed weakly.
“Can you just bring it and then you can go to bed at Grandma’s,” I said.
He agreed begrudgingly.

Meanwhile, family members began arriving at my mother’s, champagne was poured and the presents under her Christmas tree were ogled. I kept an anxious eye out for Ming and finally he arrived. As he walked up the driveway, I wondered why he had left his car in the road and why he was wearing such a strange spotty outfit. Then I realised, oh no! that he was covered in vomit.

“I just threw up in my car!” he said weakly, but ferociously. So we got his car into the driveway, he went inside via the back door so he didn’t have to see anyone, and my mother gave him some clothes to change into and put him to bed. I took the container of ham inside then got a bucket of water and tried to clean the inside of Ming’s car but it was everywhere (I will spare you the details!)

Anyway, with Ming in a bedroom adjacent to the loo, the rest of us continued our festivities while I checked on Ming periodically, who was continuing to vomit every hour or so. I felt terrible to have made him come and had to suffer his weak remonstrances of “You care more about the ham than me.”

By the time I was ready to go home, at around 9.30pm, it had been decided that Ming would sleep the night at Grandma’s.

The next morning (Christmas day) at 6am, there was a knock on the front door that woke me up and, assuming it was a recovered Ming who had lost his key, I opened it blearily only to find it was my brother! He said, “I thought you might like some company – let’s have a drink.” So BJ and I drank champagne on the front veranda, waxing lyrical about this and that and watching the birds dive in and out of the trees, including the new wild parrots I’ve never seen before. It was a fantastic hour and it actually made my day! Then BJ had to head home for his family’s 8am Christmas present ritual.

After he left, my mother contacted me to say she would bring Ming home because he was too weak to drive and had continued vomiting until 4am. So they arrived and we opened a few presents but Ming was still feeling ghastly so I put him to bed and my mother headed in to town to my brother’s place after which she was to meet me at the nursing home.

Well, the crayfish, mango, and my mother’s pavlova, were all a great success with Anthony and so were all the presents I helped him unwrap, then we watched a bit of tenor music on TV, then my mother left, then I went to do my 3-6pm shift in the dementia wing.

After I knocked off, I went back to Ants’ room and we ate the leftover crayfish (which I’d put in the staff frig.) and I went home to my no-longer-sick-but-very-weak son who struggled through the opening of his remaining Christmas presents ha!

But yesterday my mother contacted me to say she had the same thing – the gastro. and it was absolutely horrific and I was helpless to help because of contagion. I rang the nursing home to tell them the situation but that I, myself, was not affected (there is a strict rule that you don’t come in if there is any likelihood of infection of any sort). So, despite the fact that I’m not sick, I’ve been banned from coming into the nursing home until next Thursday! This means I can’t do my allotted shifts and can’t see Ants.

Thankfully, my mother is over the worst but is obviously very weak. Today Ming and I are going to hers to pick up his vomit-ridden car but, now that he has recovered, he wants to take me out for lunch first.

What a strange Christmas!

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Christmas Eve’s eve

Well, it’s the day before Christmas Eve and I am finally ready to be festive. My rather blah mood was transformed into enthusiasm after having breakfast with my mother the other day because we went shopping together and I found some things that I hope Ming will love even though he ruled that it should be a strict 3-gifts-per-person Christmas. Unfortunately I take great pleasure in breaking Ming’s rules so there are now 20 presents under the new little Christmas tree he bought. I thought that was a good number since he is still (until January) 20 years old.

Oh how I miss the pillowcase years (a habit inherited from my parents in which an empty pillowcase was placed at the end of each of our beds and on Christmas morning would be filled, rather miraculously, with presents). Up until just a few years ago, I would send Ants and Ming to bed and would spend the late hours of Christmas Eve wrapping presents and putting them into an identical pillowcase (just in case Ming woke up). Then I would go to bed but wake up at around 4am to swap the empty pillowcase with the full-of-presents pillowcase. Alas, those exciting, magical days are long gone. Last year we didn’t even ‘do’ Christmas because we were too sad about this and that and, until a few days ago, I felt the echo of that sadness and an inability to be bothered.

Then, all of a sudden, a wave of hyperactive nostalgia hit me and I was filled with the energy of what Christmas really means – the birth of something/someone miraculously new – a Jesus moment, the memory of when Ming was born, a newfound excitement about seeing Anthony every today, so ….

…. I decorated Anthony’s nursing home room and sticky-taped old and new Christmas cards on his mirrors and pictures, draped the clock with tinsel, decorated the rose tree I bought him the other week, that looks real, with baubles and wrapped Ming’s presents in his room. You see, we are having Christmas in the nursing home this year; it will be the first year that he hasn’t been home for Christmas and it wasn’t until yesterday that Anthony realised this.

Ants: I’m a bit taken aback.
Me: Why? What’s wrong?
Ants: I thought it would be at Bythorne (the name of our farm).
Me: Are you kidding? It’s too hot and the flies are terrible out there! Anyway I like it here better! Don’t argue!
Ants (smiling at my sternness): Okay, you win.

Today I will wrap Anthony’s presents in his room while I face him towards the window so he won’t see; then I’ll sticky tape more cards around his room, then we’ll have a small glass of champagne together with a bit of mango (a great combination I discovered the other day).

Tomorrow night, various members of the family who can make it, will meet at my mother’s place for the traditional Christmas dinner of turkey, ham, Harvard beets (my mother’s specialty) etc. but I won’t tell Ants about this because it would be impossible for him to join us now that he is so incapacitated physically.

Then, on Christmas morning, Ming and I will open our presents to each other, saving a few to take into the nursing home at around 10am where my mother will join us at noon for my crayfish cocktail and some champagne. At 3pm I will head off to the dementia wing for my afternoon shift, Ming and my mother will go home, and at 6pm I will go back to Ants’ room to say goodnight.

A ‘Jesus moment’ – over and over and over again.
Amen.

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Before and after!

Ming has spent several months travelling to and from Perth to audition for a variety of acting roles, and to undertake training in this field. For much of this time, he didn’t have a car or car licence so took the train or bus and either stayed with kind relatives and friends or at youth hostels. Now that he has his licence back and his cute little car, going to Perth and back has been easier and he has been relishing his independence.

But now that he has this full-time job at the restaurant (which he loves!) he has decided to put the whole acting thing on the back-burner so he has now had his acting hair cut off

Before (this photo was taken at Meg’s 80th a couple of weeks ago):
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After (this photo was taken tonight):
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The new smile

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!

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Catching up

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..

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…. and finding out that the width of hope is immeasurable!

Catchya later….

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What a peculiar blog!

I have just looked back to discover that tomorrow will mark the third anniversary of this blog. The reason I was looking back was because I want to find, in amongst all of the bird stuff, everything I have written about Anthony and Parkinson’s disease and how he, Ming and I have coped. I thought it might be useful to compile these entries into one document and see if it works as a whole, maybe as a book. Apart from the wonder of all the friendships wrought via blogging, it has also been wonderful to find that I have a record of these past three years because I don’t think I would have remembered otherwise, except as a kind of blurry fog of joys and sorrows – mostly joys.

The birds, and the wings idea, have punctuated the last three years in real and metaphorical ways. Many have now been lost to fox attacks, I have given the emus away, and all three of the original caged birds have been set free. We now have a dozen peafowl, nine guinneafowl, five geese and one duck. The casualties have been heartbreaking and I have decided not to acquire any more due to their vulnerability to fox attacks. Gutsy9 is still thriving and one of the two peachicks hatched last year has survived and I think there will be more chicks soon. I have stopped interfering in the way natural selection works. All of the birds still take bread out of my hand and give me enormous joy (except Godfrey, the gander who likes to bite me!)

But everything changes and now that most of my daytime hours are spent in the nursing home, the birds and I don’t commune as much. Hence, when they hear my voice, they come running AT me with a mixture of love and greed (for wheat) that it is hilarious to watch. And even the birds who are gone continue to live on via Anthony’s hallucinations. Almost every day he points them out through his nursing home window. The outdoor tables and chairs become turkeys; the lawn is speckled with chooks and guinneafowl; and the flowerbeds are parrots. I can see them too.

It seems a rather peculiar blog in its higgledy-piggledyness and some of my entries make me cringe, but hopefully I will be able to draw out enough of the love story to compile a coherent record that might be helpful to others who live with Parkinson’s disease.

Here is a picture of the nearly grown up peachick, still very much attached to his mother (in foreground)!
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