jmgoyder

wings and things

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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Subtle changes

The fact that my daily routine now includes spending much of the day with Anthony in the nursing home means that I don’t see his deterioration except in tiny increments, day by day.

Yesterday one of our friends visited Ants and she was just leaving as I was arriving. She is the mother of one of my best friends, nearly Anthony’s age, and has her own health problems and yet still visits Anthony regularly – an unbelievably kind and generous person but today a bit uncertain.

“I don’t think he knew who I was, Julie,” she said.
“Maybe I talk too much and it upsets him,” she said.
“Can you let me know if my visits are helpful or not?” she asked.

She was quite distressed at Anthony’s unresponsiveness and wondered how I coped with going in every day. Didn’t it get me down? I told her that I hardly ever got down any more and actually looked forward to going into the nursing home. She looked as surprised as I feel about this miracle. I am surprised that my relatively newfound eagerness to get into town to see Anthony every day has been so sustainable because I was a bit nervous that it might kind of wear off!

Now I know for sure that it will never wear off probably because I’ve accepted the status quo and am prepared for what lies ahead. Our friend’s distress at seeing Ants so deteriorated yesterday, sort of chair-ridden and blank, unable to respond verbally and very sleepy, was only because she hadn’t seen him for a week or so. I guess it’s a bit like noticing how much a small child has grown if you haven’t seen that child for awhile; it’s a bit of a shock.

After our friend left, I went into Anthony’s room and said, “Didn’t you recognize M?” but he said yes he had. I could see, though, that what might have disturbed M was the increasingly blank expression on Anthony’s face which is partly due to his facial muscles not working because of the Parkinson’s disease, including not blinking (which makes him look both sad and angry), and partly due to the confusion of dementia.

Of course Anthony is only going to get worse, more confused, eventually bedridden and totally unresponsive, so I am developing a more tactile and rather boisterous relationship with him instead of pushing the conversation thing. After all, his voice is now so soft and his words often unformed, so we need to establish a way to communicate that transcends the verbal – almost like a code. This has included hand-holding, neck massaging, sitting on the arm of his chair with my hand on his head, and/or loudly beckoning him out of his slumber with a funny anecdote from the past, clowning around and bopping to music, asking him for advice with a nod or shake of his head, watching dvds of television series he used to love, laughing and being cheeky (I have a rather raucous laugh which I make the most of in order to see his slow smile), and lots and lots of hugging.

The following photo is my usual profile picture and it’s a bit of a shock to realize this was five years ago!

Julie, Ants and Ming 2009

Then I just discovered this one, obviously taken seconds after the first photo. I can’t wait to show it to Anthony later today! I hope it will make him smile my smile.

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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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Dusk

It is difficult to take photographs at dusk, especially if you have an inferior camera and/or an amateur photographer, and/or if that same amateur photographer is a bit rusty. Nevertheless, and despite the poor quality of the shots, this particular amateur photographer thoroughly enjoyed getting herself back out there last night.

For some reason, many of the peafowl like to congregate on the roof of the wash-house at dusk, sometimes just to look up, which they are very good at.

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On the other hand, this same roof has also become the stage for some ferocious scuffles between the King peacocks. This photo was taken during a short truce because I didn’t click the camera in time to capture the battle. It’s okay, they didn’t hurt each other; one just flew away. In the background you can see the top of a palm tree pretending to be a peacock.

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And here is Gutsy9 in meditative mode.

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I handed in my application today for the ‘lifestyle assistant’ job at the nursing home and am excited at the possibility but trying not to get my hopes up. It’s part-time which is perfect for me and the usual shift seems to be from 3-6pm which is also perfect. I told Anthony but lately he has been so sleepy and confused that he didn’t really understand until I said, “Well, the money might be good” at which his eyes lit up – ha! Money is something he is constantly worried about, having been a hard-working, frugal farmer for all of those decades. And, yes, it would be good to be earning a wage again and doing something I have always wanted to do – interact, relax with, comfort, and share a joke with people who have dementia. All those years ago, when I was a nurse, there was never any allotted time for this and the notion of lifestyle assistance was unheard of. How wonderful that this nursing home employs people in this way.

If I get the job I won’t be home until after dusk some days. This is probably a good thing as I think I am better at morning photos!

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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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Memory Lane!

One of the most extraordinary things about my mother’s 80th birthday last week was her gifts to us! To each grandchild she gave beautiful engraved keyrings, and to each of her children – my two brothers and me – she gave a photobook and a CD of photos of our childhood in Canada and Papua New Guinnea. None of us had seen these photos from 30-40 years ago because most of them were on slides; it must have been a hell of a job to get them Cd’ed and it was such a wonderfully unexpected surprise! I keep looking at all of the photos with a mixture of nostalgia and joy; actually I can’t seem to STOP looking at them because I am gobsmacked at how cute I was haha!

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One of the best things is to see Dad again; he isn’t in many of the photos because he must have taken most of them – our wonderful father, Brinsley Lane, who died suddenly when we were still in our teens and Mother was just entering her 40s.

Her gift to us is, of course, ongoing – a rich and vibrant record of a strange, varied and unpredictable childhood that is/was so much like Narnia – magical!

Thanks Mama!

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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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Would you rather …?

The storybook that my mother, Meg, read from on her 8oth birthday cruise last weekend was one of her grandson’s favourites when he was little. (Thanks Morgan!) Here is a link to it on youtube https://www.youtube.com/watch?v=BVMLPZmKGlY

Meg brought the book with her and insisted that all of the grandchildren sit on the floor of the boat despite the fact that half of them are now in their 20s and even the youngest (12-year-old twins) are close to 6 feet tall. Then she began to read and something rather magical happened as they were all catapulted back in time and transformed into giggling little kids in the thrall of Grandma. One of the most hilarious moments was when my mother said to one grandson, in her best school teacher voice, “Rohan, pay attention!” Everyone collapsed into laughter as this big ‘boy’ – now a husband and father – obeyed. Then everyone competed, hands raised, to answer the questions posed on each page of the book.

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In googling information about this storybook, I discovered that “Would you rather …?” has become a bit of a party game and I can see why! It was one of the highlights of a perfect day.

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Simplicity

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One of the things that I most appreciate about life, now that I am spending most of my daytime hours in the nursing home, is simplicity. Today – in volunteer mode – I helped out with a luncheon for about 60 residents and I loved every single minute of the three hours of ‘waitressing’. Anthony wasn’t mobile enough to join the throng which actually made it easier for me to focus on who wanted tea and who wanted coffee, serving the abundance of food, filling water jugs, asking if such-and-such could have another wine or beer, cleaning up when it was over etc. If Anthony had been there I would have been distracted, so it worked out well. Hilariously, two of the residents asked, “Where’s your father?” I don’t correct this any more because it just embarrasses people; I just said, “He is being a sleepyhead today” which always elicits laughter. Plus I was able to dash up the hallway to his room to check on him from time to time and he was fine and kept telling me I should brush my hair!

There is something beautiful about the attitudes expressed by many elderly and infirm. Every single tea, coffee, sausage roll, prawn, mini-quiche and, eventually, banana splits, was accepted with the kind of gratitude and graciousness that seems to accompany the dignity of age. My left hand was patted a lot and I found myself putting my right hand on people’s shoulders, asking people’s names if I didn’t already know, and smiling back at all of the smiles I was getting.

The simplicity of this event, its easy goodwill, and the incredible courage of so many people battling the various demons of age and disease but still able to smile, and to eat, drink and be merry, made me realize how, as a younger-than-old person, I could re-see every single day as a gift instead of worrying about all of the yesterdays.

So today I choose to say goodbye to everything that has turned a rotten yesterday into a rotten tomorrow. It is an enormous relief to discover the simplicity of today! And to look forward to the long legs of tomorrow!

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“Swallow it!”

The swallowing reflex is something that many people with Parkinson’s disease eventually lose and recently it has become more and more difficult for Anthony to swallow food, drink and especially the many pills he has to take. This morning, after a lovely visit from members of the family who had to travel home today, he said his feet hurt, so I asked for panadol and the nurse brought the pills in just before lunch was delivered.

He was given the panadol inside a spoonful of custard and I told the nurse that I would make sure he swallowed them but 15 minutes later, while his lunch got cold, he kept trying to spit them out and, no matter how hard I tried, with little sips of water and gentle persuasion, he just wouldn’t/couldn’t swallow the pills.

I got so angry with him! Furious, and in tears of frustration, I kept saying, “Just swallow, Ants, SWALLOW!” But he just kept sort of munching on the pills and trying to get them out of his mouth. I kept pushing them back into his mouth and giving him sips of water and he kept resisting me and kind of trying to push me away. Afraid that he might choke, I fought back and yelled at him “Swallow it, for God’s sake!” and finally he did after which I fed him his lunch which he swallowed easily – ironic.

It is a long long time since I have expressed anger towards Anthony so I felt disgusted with myself for having done so when I know he can’t help this sort of thing.

Later, once I’d calmed down and he’d said “Sorry Jules,” I asked him why he wouldn’t swallow the pills and he just said, “I thought they might be poison.”

“Why the hell would I poison you? Don’t you trust me?” Yes, my voice was a little shrill.

So I guess we are now entering yet another phase: inability to swallow, paranoia, extreme confusion. I reported the incident to staff so they are aware, and the doctor is going to review Anthony’s meds in order to find something easier to swallow.

For the remainder of the day, after Anthony and I got over our tiff, he slept in his armchair and I held his hand. Every now and then he would drowsily reach out to hold my other hand and whisper, “Sorry, Jules” again.

This previously robust, macho, laughing man of mine – my hero – now reduced, diminished by this rotten disease, and yet still more concerned about me than himself.

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