November | 2014 | 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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Memory Lane!

by jmgoyder

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!

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!

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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Would you rather …?

by jmgoyder

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.

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

by jmgoyder

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!”

by jmgoyder

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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What a wonderful day!

by jmgoyder

It is nearly 6.30pm and Ming and I are home from the birthday boat cruise for Meg’s 80th. It was relaxing, so much fun and everything we hoped it would be: champagne at G’ma’s this morning, after Ashtyn, Gordon and Ming decorated the boat with balloons and stuff; then the cruise itself up the river with a buffet lunch and licenced bar. Ash did the toast and officially announced that she and Gordon are going to have a baby (her first official announcement now that she is 3 months pregnant), Meg read out the storybook after telling all of the ‘children’ to sit on the floor – so funny! Zillions of photos were taken by several people, my oldest brother read one of our mother’s funny stories and, after the cruise, we all retired to a nearby park to kick the football, reminisce, be together, and Ro and Lauren went to pick up baby Neve who, of course, stole the show! My book for Mother was a bit of an unexpected hit, especially with my first nephew’s partner who I hadn’t met before. Absent people were acknowledged (one from each of the three families – unable to come along for one reason or another); their absence a stark reminder that life is not always easily lived and parties are not for everyone. For example, it was hard not to have Anthony there because once upon a time he would have been the life of the party! Anyway, here are some photos of today’s celebration of Mother’s 80th!