jmgoyder

wings and things

Nov 6

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)!
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Nov 4

Simplicity

by jmgoyder

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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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Nov 2

“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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Nov 1

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!

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Oct 31

On making the angry doctor nearly smile

by jmgoyder

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!”

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Oct 13

Un-blogged….

by jmgoyder

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.

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Oct 5

Anthony picking olives a few years ago

by jmgoyder

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

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Oct 1

Flowers, food and fun

by jmgoyder

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!)

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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]

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Sep 28

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.

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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

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

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

G9!

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Sep 27

One-liners

by jmgoyder

Today, the nurse-in-charge told me that they were concerned early this morning because Anthony couldn’t formulate words and I said that I had noticed this too over the last week or so. Of course this loss of grip on language has been happening for some time and sometimes Anthony tries, fails and sighs in frustration and resignation. His incoherence now, however, is so impossible for me to interpret, that I have become very good at pretending to understand.

But then all of a sudden, he will come out with the most perfectly sarcastic one-liner that it cracks me up. This happened last week when the nursing home had the accreditation people in. Ants and I were interviewed by a lady who directed her questions at Anthony but, because he was a bit confused, I had to kind of interpret his answers, then double-check for his nod.

After the interview was over and Ants and I were alone again, he grimaced arrogantly, and said, clearly and coherently, “I think I was a little too enthusiastic, Jules”. Well, of course I cracked up laughing straight away but Ants just gave me an ironic look and punched his right fist into his left hand and began to smile his slow smile.

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