jmgoyder

wings and things

“Can I get you anything from the shop, Ants?”

This has pretty much become my exit strategy lately when leaving Ants and coming home from the nursing home. I say I am just going up to the shop to get some eggs (just as if we are home), then I ask if he wants anything, like chocolate or cake or cheese or bananas and sometimes he says yes to one or more of these items. “Don’t be too long,” he sometimes says and I promise that I will be as quick as I can. If I have been at the nursing home since 11am or earlier, I leave at around 3.30-4pmish; if I have only arrived to help him with his lunch, I will often stay until 5.30pm so I can help him with his dinner (his ability to feed himself fluxuates a lot) Occasionally, like yesterday, I take the day off and Ming visits for me, or my indispensable mother does.

My exit strategy is a ruse of course, a way of leaving Anthony that deceives him into thinking that I am coming back soon but, after weeks of using this, at first tentatively, but now confidently, I am convinced that this is much better than saying, “I’m going home now, Ants – I’ll see you tomorrow.” If I say that, I have to explain at length that he is in a nursing home and this is the kind of conversation that happens, when he is able to talk:

ANTHONY: Why can’t I come too?
ME: Because of your Parkinson’s disease, remember?
ANTHONY: But I’m getting better!
ME: I know, but you are still too heavy for me to bring home.
ANTHONY: Well can you tell those kids [the staff] to keep an eye out for me?
ME: Of course!

Sometimes this kind of conversation goes on and on and on and might be prolonged by Anthony’s hallucinations that there are dogs, cattle or even snakes in his room, all of which I have to dispel before I can leave; sometimes he is unable to speak at all and will simply grab my hand and snuggle it up to his face; sometimes he will be asleep when I leave so I tell the staff.

This afternoon, this was our conversation:

ME: I’m just going down to the shop, Ants. Do you want anything?
ANTHONY: Love – a lot of it.
ME: I’ll give you a bit now [hug] but I’ll get 100 kilos of it and bring it back soon, okay?
ANTHONY: Okay.

And he smiled his beautiful new slow smile and let me go….

28 Comments »

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!

30 Comments »

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…..

Best-Wise-Famous-Quotes-335

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

Catchya later….

28 Comments »

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)!
IMG_3881

34 Comments »

Simplicity

IMG_4079

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!

38 Comments »

What a wonderful day!

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!

IMG_4055

IMG_4056

IMG_4057

IMG_4066

IMG_4069

IMG_4072

IMG_4071

IMG_4103

21 Comments »

On making the angry doctor nearly smile

Doctors do not like to be called into nursing homes on weekends so it was with some trepidation that the nurse-in-charge called the doctor-on-call last Sunday. It was the second day that Anthony had been in bed having suffered two falls. His blood pressure was very low, he was moaning with pain from constipation (a constant problem with Parkinson’s disease) and was extremely incoherent. I was very sad because it gave me a glimpse of what he would look like on his deathbed and I couldn’t seem to get rid of that thought.

After ringing the doctor, the nurse came in and told me he was coming but not happily and had hung up on her, so I was prepared for a bit of unpleasantness and was not disappointed! He strode in with the nurse, on his face a grimace of impatience, and shot questions at us none of which we could answer with any accuracy, which made him even angrier.

“Can he talk?” he snapped at me.
“Yes, well, usually, but not for the last couple of days,” I said. “You could try I guess ….”
“Mr Goyder?” he barked at Anthony.
“Ants, the doctor is asking you a question,” I coaxed.
Anthony looked at the doctor.
“How do you feel?” asked the doctor.
Without the slightest hesitation, Anthony said, “Most of the time, I feel very good, thank you.”
The nurse and I shared a jawdrop, then I cracked up laughing so hard that the doctor’s expression softened.
“You will feel you are here under false pretenses!” I gasped.

A few minutes later, after ordering blood tests and sending a report to our usual doctor (who is never angry!) the angry doctor spoke kindly to me, apologized to the nurse and left, after which she and I shared another laugh.

Anthony then lapsed back into incoherence except to say, “What a lovely man!”

14 Comments »

Un-blogged….

There are several reasons that I have become somewhat disconnected from the blogosphere lately:

1. I have made Anthony’s nursing home room a simulation of our home;
2. I’ve become addicted to the Danish series, The Killing;
3. I’m preoccupied with crafting a present for my mother’s soon-to-be 80th birthday;
4. I have given up on trying to tempt Ming with my ox-tail stew;
5. My volunteering in the dementia ward on the weekends is a gift to me because, years ago, when I worked as a nurse in various nursing homes, there was never any time to actually chat with patients; now it is actually something that is scheduled!

So, I have decided to go for a job at the nursing home in the hope that my so-far volunteering reputation will help.

27 Comments »

Anthony picking olives a few years ago

I have had a much more social week than usual with the arrival of my niece’s in-laws from Scotland: activities have included a beach barbecue, a day-long winery tour, a visit to our farm, my great-niece’s first birthday, and then a 21st last night. All delightful! Obviously, this altered the routine with Ants and the volunteering, but not hugely and I didn’t visit him at all on the winery day, hoping he wouldn’t notice.

This week is similarly social, with my best friend, Tony (the priest who married us), coming down for the night and a professor I worked with a couple of years ago, dropping in with his wife on his way back to Perth the next morning. This will slightly alter the routine with Ants once again but since it all worked out okay last week, I figure it should be okay this week too.

I think I blogged about the new routine awhile ago; it’s pretty simple really and was probably staring me in the face for several exhausting months, but I have always had rather slow reflexes – ha! The epiphany arrived at the doorstep of my heart one foggy morning and said two words: “Switch homes”.

It took me ages to understand what Epiph meant but then, bingo, the penny dropped. Instead of bringing Anthony home, either by wheelchair taxi, me, or Ming (visits that became increasingly gruelling, physically, mentally and emotionally, for all three of us), it was gently suggested that I simply make myself at home in the nursing home. Epiph is good like that; she recognizes my lack of pragmatism.

Since then, our marriage, Anthony’s illness, Ming growing up, and all the other bits and pieces of emotion and stuff….

have uncurled raised/dropped fists
have unfurled the residue of grief into a great wide flag of hope

The social stuff is good too because it provides me with conversation material for Ants. He loves it! I feel like I am learning something really important about dementia, or maybe love, not sure yet. A year ago I was struggling with how to cope with the impending boredom of the nursing home. Now, this is my attitude:

“Boredom is the feeling that everything is a waste of time; serenity, that nothing is.”
Thomas Szasz

38 Comments »

Flowers, food and fun

Flowers:
It is so interesting that the avocado tree has unreachable fruit at its top, but is blossoming down below. The very last edible avocado is in the refrigerator, ready to take to Ants tomorrow (he loves them!)

photo (2)
photo (4)
IMG_3802

I’d been bringing various camellias, roses and even bottle brush into the nursing home but the other day I thought I may as well tear off a whole branch of avocado blossoms and arrange them in Ants’ room. This whole flower thing is kind of weird because I really don’t have a clue about this garden Anthony established all those decades ago and have only begun to take a bit of an interest now because, well, why not! Also, every time I bring Ants flowers he gets a thrill out of it. I found two stray roses yesterday and their scent was fantastic.

Food:
Ages ago, I began taking an interest in cooking more interestingly, partly in order to be able to provide Ants with cakey stuff (he has a sweet tooth), partly in order to provide Ming with sustenance (he has a fussy tooth) and, more recently, because I have become fascinated by, and dedicated to, preparing food from scratch. It’s really time-consuming to chop or grind the herbs, roots, chilis etc. but what a great feeling/taste, and how nostalgic it makes me for my early days on this farm when Gar (Anthony’s mother) would point me in the right direction of the flour tin with her walking stick; teach me how to make white sauce; show me (with Anthony’s help – probably our first vaguely romantic moment!) how to pluck a duck and prepare for roasting.

Okay so my latest food discovery is stone-age bread. I just typed this into google out of curiosity and was a bit surprised to find there were already so many recipes. I tried the first one and bingo – beautiful! I would have taken a photo of my own successful loaf of bread but I’ve already eaten it! I will refine the recipe and post soon (yeah, I can hear the non-sighs of anticipation ha!)

Fun:
Before Anthony became so ill with Parkinson’s disease etc., we had a relationship that was full of banter, teasing, laughter, fun. Some of the fun stuff was simply giving cheek so, today, when Ants tried to say something to me in his newishly quiet, croaky, soft voice, I took him by the shoulders (gently!) and said “SPEAK UP, ANTS, CLEAR YOUR THROAT, STOP BEING SO FEEBLE!” Then I punched him lightly in the shoulder and, yeeha! I was the recipient of one of his gradual, wonderful smiles – kind of like sunrise in the mist, bit by bit by bit.

[Note to other bloggers: I hope you know I am reading your posts but just no time atm to comment etc. x]

12 Comments »