Wings | jmgoyder

Catching up

by jmgoyder

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…..

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

Catchya later….

Animal Australia Birds 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 Wings

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What a peculiar blog!

by jmgoyder

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)!

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

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Birthday girl!

by jmgoyder

Okay so today is my mother’s 80th birthday and nobody can believe she is that great age because she looks so young. We met up at the nursing home at 11am so that Anthony and I could give her ‘the book’ together and (sigh of relief) Meg loved it, despite its falling apart with messy fullness! Then we went out for lunch with a sprinkling of special people with the surprise star being Meg’s first great-grandchild who has just turned 1.

On Saturday we have the party, a 2-hour boat cruise which is just family because, if we had to include friends, it would have entailed a ship!

All of the grandchildren wrote something for Grandma to be included in the birthday book and here is what I did with Ashtyn’s words:

Ashtyn is Meg’s first grandchild, my fantastic first niece, my god-daughter, Ming’s godmother and, in so many other ways, the star of the family. She and Meg are very much alike in that their presence at any occasion elicits a lot of attention because they are both so beautiful!

So, Mama, you are now 80 +
Weird
wondrous
YOU!

Note: I will CHANGE the subject tomorrow!

Australia Birds blogging Embarrassing moments Family Friendship Happiness joy Teenagers Western Australia Wings

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A white peacock twirls: a haiku (or two)

by jmgoyder

A white peacock twirls
in an old, red dairy shed,
his dance ancient, new.

He wrestles the wind
and the dust of the old shed,
to be absolute!

Animal Australia Birds Happiness joy Wings

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Gutsy 9 – my fantastic bird-in-hand

by jmgoyder

For those who don’t know, G9 is a peachick who, for some reason (maybe because she was half blue/half white) was abandoned by whoever hatched her. I caught her as she was scuttling, terrified, into the old dairy and pretty much raised her with the hands of Ants and Ming.

Today, I decided that I would come home earlier than usual from the nursing home. I told Ants I had to go and feed the birds and dogs, and then said I would see him later.

Ants: You won’t come back.
Me: What do you mean? I always come back!
Ants: Not, yes, what car?
Me: Our car, silly!
Ants: How many calves? I need those people for the fireplace
Me: Only ten left to feed. Ming will do it. I know who you mean for the fireplace.
Ants: Are you sure?
Me: Yes, should we ring tomorrow?
Ants: You do it – something is wrong with me.

When I got home, I went straight out to find Gutsy and, as usual, she was waiting for me:

I’d like a word, Julie

You’re always out and about and I feel ….

Oh I think I’m going to cry – how embarrassing!

G9!

Sep 22

Five seconds
by jmgoyder

Today, I experienced, for the first time, five seconds of what I always knew was inevitable. For five seconds (and I know it was exactly five seconds because I kissed Anthony five times – three on the nose and two on the forehead – all in quick succession, to remind him….)

Ants!
It’s me – Jules!
Ants!

A syllable for each peck of a second.

This is the first time Anthony hasn’t recognized me and, even though it was only five seconds, it is good to have had that little taste of forewarning/arming because I still have time to develop some tactics and hopefully some wisdom.

When I told my mother about the five seconds of unrecognition (yes, ‘unrecognition’ is a word – I checked) she squeezed my hand but I quickly reassured her that I was fine with this first of what will be many unrecognitions. (It’s kind of weird being comforted by your 79-year-old mother about your 78-year-old husband!)

In what I think will be the near future, the challenge for me will be in how to reassure Anthony that I am indeed Jules, his wife, without embarrassing him. I know this because lately he asks a lot for his mother and many others of his family who are now deceased. Sometimes I say they are all well but very busy but sometimes (for example if he is distressed, as he was for his mother again the other night), I will gently remind him that she is gone.

I was thrilled today to have a conversation with a friend of mine, Ann, who now works as a clinical instructor at the nursing home (she and I both left our jobs at the university at around the same time). Ann told me that she has been showing all staff, including domestic staff, a DVD about Parkinson’s disease that explains, among other things, why someone with PD can sometimes walk, and other times be totally unable in which case encouraging words are useless. Interestingly, the DVD also explains why a person with PD may not respond to a greeting, and therefore appear to be unfriendly. Ann told me that she pointed out to the staff that people with PD need time to process the greeting and should, instead of rushing past with a “Hi Anthony!” and disappearing, wait for his response.

After all, it only takes around five seconds for Anthony to say “hi” back.

On the other hand it only took one second for Anthony to say “Rubbish! Throw it out the window” about the cupcakes I made for him last week!

Yes, I know I’ve posted this photo before but I love it!

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Sep 9

Simulating home
by jmgoyder

As you can see we are still experiencing a wintry spring after its false start last week. The weather alerts for Western Australia are a bit alarming with winds of up to 100 kph so I came home a bit early from the nursing home yesterday.

I have begun to arrive at the nursing home by 11am most days now because, with the volunteering, I need plenty of time to wear both ‘hats’. It is working out so well but more about that in another post.

Over the two and a half years since Anthony entered the nursing home, his room has become as close as I can get it to our real home: freshly picked flowers (although I never did this when Anthony lived at home – he did!); daily food treats on plates and a cutting board I keep there; familiar shows on television via the DVD; a well-stocked bar and our own glassware and so on.

And (my latest idea!) Ming’s 2.5 kg weights. I didn’t expect Anthony to be quite so enthusiastic about this but I was wrong – he did around 20 for each arm with me cheering him on and cracking up laughing at the same time!

Despite my intention to take Jack, our Irish terrier, in to see Ants, I couldn’t find either his leash or collar that day so I will probably take Blaze instead for the time being.

Even I am beginning to feel more at home at the nursing home than I am at home, which is really weird! Well, at the moment, it is a lot warmer there.

Animal Australia Birds Family Friendship Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia Wings

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Aug 16

From listless to listful
by jmgoyder

Over the last few weeks I have discovered something wonderful about lists. You know, the kinds of lists that read like this:

Monday:
– pay bills
– ride bike
– groceries (don’t forget toilet paper!)
– change bedsheets and do the washing
– vacuum house
– write 1,000 words of new book
– ring plumber
– buy new hoses to replace leaky ones
– see Anthony
– cook a healthy meal
– catch up with other people’s blogs
– wash car
– plan next week with Ming
– ring Mother to arrange lunch
– start new filing system
– get prescriptions from chemist
– book lawnmowing people
– do tax
– return library books
– start taking photos again
– start praying again
– make soup
– make a cake for Anthony and Ming
– go to bed earlier and get up earlier
– do a cull of clothes
– sort out rubbish to take to the dump
– do tomorrow’s list

Okay so, despite the fact that none of the above tasks is, in itself, onerous, it was this kind of list, that rendered me listless. (Interestingly, the word ‘list’ derives from the Middle English word, ‘pleasure’). I would only ever be able to accomplish a few of my listed tasks, I would then feel like a failure….

Eventually, I realized that this kind of list-making was making me extremely unhappy, so much so that I could hardly face each and every day. I resented each and every task I didn’t get done and each and every goal that went by the wayside.

Nevertheless, every night I would make another list for the following day. Energized by a pre-midnight spark of incentive, I would make more do-able lists. But with no job to go to, with no Anthony at home to care for, and with Ming out of school, there was rarely anything on my lists that couldn’t wait, so it felt as if I were continually failing myself.

As a result, the familiar depression curled itself into a small bundle of rock-hard heartburn that only left me alone when I was asleep. So I slept away many days in June until, on the 29th, I woke up with a new idea; I would write my daily lists differently; I would write them backwards instead of forwards; I would write what I had done every day instead of what I should do.

Monday:
– paid all of the bills
– communed with dogs
– did all folding and put a load of washing on
– cleaned kitchen meticulously
– made a cake!
– saw Anthony from 1 – 4.30
– bought a bunch of coriander for the first time in my life
– made a curry from scratch
– washed hair
– communed with birds
– watched a show with Ming
– began reading a library book

To have done even some of the things I had listed as to-do for weeks (but not done), catapulted me out of my fug and into a fantastically different way of seeing each day. Now, with my listful notebook always handy, I list every single little thing I do on every single day – everything from washing my hair to planting strawberries; everything from poaching eggs to making friends with a new resident at the nursing home; everything from catching up with long-lost relatives to picking camellias for Anthony’s room.

This new listful method has also evolved into a better daily routine whereby I am in the nursing home every afternoon, seeing Anthony, doing the volunteering, seeing Anthony again and usually getting home by 6pm.

It is so wonderful to NOT be listless!

Animal Birds blogging Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers Wings

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May 10

Ming was successful in his audition!
by jmgoyder

For those who don’t know, Ming has been doing ‘extra’ work over the last couple of weeks but last week he had to properly audition for a more serious role and he got the part! It’s only for a trailer for a film/TV series pitch so it is very early days but of course I am already seeing his name in lights haha! He is the main supporting role in what looks like a political drama comedy and he will play the part of a rather arrogant young up-and-coming politician.

As the rehearsals and filming will take part in Perth (2 hours away), he will be staying with friends and family as he has done for the last couple of weeks. I told him to increase the list of possibilities so that people wouldn’t get sick of him, but he just said, “Mum, who could ever get sick of me?” I decided not to answer that question.

So exciting!

Family Friendship Happiness Wings

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Apr 28

Sweet and Sour
by jmgoyder

I don’t like sweets, desserts, chocolates, lollies, and would much rather have cheese and crackers.

This morning, Ming and I went into town to pick up Anthony for a doctor’s appointment for both of them (I am the mere chauffeur – ha!). Ants needed one of his skin cancers burned off with the liquid nitrogen spray thingy, and Ming needed a new prescription for something.

Tonight, when I rang Ants to say goodnight (this only seems to work every few days), a nurse answered and immediately handed the new telephone receiver to him.

I said I was just ringing to say goodnight and he said that this was very sweet of me and, after we hung up, I remembered how, initially (when he was 41 and I was 17), he was so horrible to me but, occasionally said things like “Jules, you are so sweet!”

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