wings and things


Ever since I described Anthony as being in “good physical health” on my blog, which seems an hilariously ironic way of describing someone who has just turned 80, is living in a nursing home, with more diseases than I can count on one hand, Anthony has been remarkably fit!

It has been an extraordinary few days with Anthony walking (with his walker of course, and accompanied by carers), and talking with a bit more gusto, and smiling widely with the various staff who come and go from his room.

Today, my mother visited us in his room and it was such a delightful day. Even though Ants often refers to the mostly female staff as “those guys” he still gets a real buzz from the way many of these beautiful women flirt and banter with him.

Apparently Ants has been walking better and doing physiotherapy and occupational therapy better and he even demonstrated some arm exercises with the OT today in our room. It was hilarious and I am so grateful for these people who really do care about him!

Of course, he isn’t getting better. That would be, physiologically, impossible, but his extraordinary liveliness this week has been such a buzz. I know I’ve said this before, but Anthony is the most resilient person I have ever come across; he never complains even when I say no to his requests to come back to the farm (often his childhood farm, not this one). He accepts the status quo, accepts his health problems, accepts that when I leave to go grocery shopping and he says, “don’t be long, Jules”, I am not coming back until the next day. And this almost never comes back to bite me.

This afternoon, one of the OTs said Ants was, as always, invited to “Happy Hour” (a monthly event in the common room). His response was a perfect representation of how extraordinary and funny he is:

Anthony: Is that with all the old people?

Me: Yes, but it could be fun; we’ve done it before, remember?

Anthony: Do I have to?

Me: No, of course not!

Anthony: They’re all so old so no thanks.

And I am reminded again of the best gift Anthony gives me, not every day but often enough – laughter.






Who am I?

No matter how prepared for it you are, it still comes as a shock when a person you love stops recognising you.

When Ming dropped in to see Anthony on his way home the other day (it was early evening), Ants didn’t know who he was but guessed that it might be S, his youngest nephew.

I told Ming not to take it personally and that lately Anthony sometimes disassociates me from Julie and will ask me where she is. This lack of recognition doesn’t hurt at all because I have been half expecting it anyway and it is very easy to convince Anthony that I am Julie. But of course Ming was, understandably, hurt and perturbed.

In this final phase of Parkinson’s disease dementia, Anthony is experiencing paranoia, delusions, hallucinations and extreme confusion. Now that he has so much trouble speaking (physiologically and cognitively), I am getting better at listening to his whispered fears.

Anthony: Watch out for those boys.

Me: They aren’t boys – they are the nurses looking after you, Ants!

Anthony: Are you sure?

Me: Yes!

Yesterday it was me, my mother, Ming, and multiple staff, popping in and out of his room, enabling his grin but, after individuals left, Anthony would ask, “Who was that?” – even about people he has seen daily for years.

It is quite possible that one day I will go in to see my husband and he won’t recognise me, but I have decided not to worry about that day. He is still in good physical health (well for an 80-year-old!)

And even if he doesn’t recognise us as us, he will still want Ming’s boisterous hugs, my double-handed hand holding, my mother’s silent knitting, and the banter of the staff at the nursing home.

Who am I?

I am the person who reassures Anthony that the farm is going well, that the money situation is fine, that the cows are being milked by an amazing team, that there is plenty of kerosene for the Aga, that his mother is fine, that I will buy a mango for tomorrow….






Communicating with Anthony

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT  a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’






The other day I felt the whiplash warning of a storm,

but it passed!

I had my armour on, I had my family protected; I was ready for the storm,

but it dissipated!

I sharpened my sentences with full-stops so that they wouldn’t ricochet back as semi-colons,

but nothing I wrote/said had the slightest effect on the storm-brewer.

I’ve become like a cartoon character of the lioness/mother bear who protects her family.

Overly sentimental posts about Anthony are simply an expression of ongoing grief, disbelief that he has lived so many years post prognoses. Ming has been absolutely amazing in every way.

Ming has a way of unravelling the bitter-and- twisted yarn into a coherent thought and, today, I thank him so much for reminding me to be gentle.




A new idea

Okay so my new idea is to visit Ants later in the day, like I did this afternoon. That way, I can get other stuff done (writing, picking tomatoes from my garden, having heart-to-heart conversations with Ming, researching PDD, feeding the peacocks, vacuuming the house, finding the iron etc.)

My mother visited and fed Ants his lunch today but, by the time I got there, he was in bed, propped up ready for tea and he thought my mother’s visit was yesterday. I threw myself onto the bed and hugged him, much to his amusement, and lay there beside him for a bit, kissing him ferociously on the lips quickly, until he grinned.

Maybe I should visit later in the day so that he has a good memory of seeing me before he goes to sleep. That might be a better way for me to venture forward – dunno! That way, I could deal with daily life stuff, go into town to feed Anthony his tea, then come home and chill.

Over the years, lots of people have advised me to look after me, but I don’t buy into that whole ‘me’ thing because it’s so weird; after all, a ‘me’ can’t be isolated from a ‘we’.

I think I have now resolved various issues to do with family politics and, having spoken to Anthony’s only remaining brother yesterday, we have a tenuous agreement that he will ring me before visiting. I stated the reasons, he rejected the reasons, but at least we had a dialogue. My feistiness sought refuge in a compassionate sinkhole. Futile, of course. Silly me.

But none of this matters any more – none of it. Anthony is the best person I have ever met in my life. He was my friend for over a decade before he became my husband; he was a middle-aged, bachelor dairy farmer, a workaholic, a person who liked to run in the paddocks just for the fun of running. He was loud and, like his mother, liked to party; he was crude and respectful at the same time; he was snobby and/or ‘common’ simultaneously; he was my absolute hero.

So, perhaps, when I feed him his tea tomorrow, I will remind him of these halcyon days!



Today, as I fed Anthony his lunch, he took my hot hand into his cold hand, and kissed it over and over again until I laughed hysterically.

Anthony: Shhhhh! You are so loud!
Me: I was always softly spoken until I met you!
Anthony: Shhhhh!
Me: Are you ready for your next mouthful? OMG you are like a starving dog!
Anthony: I’m hungry.

Anyway, after I fed him his lunch (he seems to have forgotten how to use cutlery – normal in cases of PDD) I got my mother’s amazing Christmas cake out of the cupboard and he pretty much vacuumed it all up!

Lately I have become a bit haphazard with visiting Ants. For example, when he is in sleep-mode, I don’t stay very long; but if he is in wide-awake mode, I stay. It’s a kind of loose arrangement whereby I try to spend at least a few hours per day with him. I should probably turn this into a more regular, regulated routine, but, since I stopped working at the university (and that is a few years ago now), I have lost any sense of daily routine. I suppose I have just been kind of going with the unpredictable flow of Anthony’s PDD.

When I take a day off from seeing Ants, I simply summon Ming or Meg to do so.

Almost every time I enter Anthony’s room, he looks at me and says: “How did you find me?”

Almost every time I leave Anthony’s room, he asks: “You won’t forget where I am?”

This afternoon, he whispered something a bit more poignant: “Jules, don’t forget about me” and I reassured him, of course!

His verbal antics aren’t so acrobatic anymore; his sarcasm is subdued, but the way Anthony stares at photos of Ming and me and him – especially the ones in which Ants is still healthy, I am young, and Ming is a little child – are particularly moving.

Now that Ming has converted a couple of videos into dvds (of wedding and baby Ming), I can see clearly how this nearly 40-year-old relationship has impacted on all of us in various ways.

And this is probably the moment in which I begin to cry (unless I find a good movie).


Auto/biographical risks

I was very fortunate to have once been a student of Elizabeth Jolley. She wrote fiction that was heavily laced with fact; she changed names to protect the guilty; she took risks.

The primary reason that I have hesitated over the years (decades actually!) to write what I think is a rather spectacular love story, is due to the yucky bits of the story – the betrayals, conflicts, mysteries and agonies in and amongst its success.

By writing increments of this “Once upon a time” story, I face the challenge of writing about how Anthony and I dealt with the disapproval of our relationship from both sides – from both families – and from well-meaning friends.

Over the last few weeks I have blogged outside the “Once upon a time” story, with tidbits of information about a recent event that traumatised me, and reminded me of some of the yucky stuff from the past. These posts, some now deleted, or edited, are, privately, an avenue into the complicated past of my relationship with Anthony.

When I say rather dramatic things like ‘spectacular love story’ I only mean that it was against all odds – a 41-year-old and an 18-year-old (the beginning), and now (the ending?), a nearly 57-year-old girl/woman sitting in a nursing home with her hands hugged by his nearly 80-year-old fingers.

My recent truthful tidbits have earned me the angst of one family member and, conversely, the support of many others.

I remember, years ago, Elizabeth Jolly speaking to me about one of my short stories:

EJ: This is far too painful, dear. Rewrite it.


Dilemma delights

The other day, one of Anthony’s nephews and his wife visited us at the nursing home. We figured out that we probably hadn’t seen each other since Ants’ 75th. My mother also happened to be there, and Ming arrived soon after because he wanted to re-meet one of his many cousins.

As soon as this nephew entered the room, he sat right next to Anthony, shook his hand, made eye contact, and exclaimed, “Uncle Ants!” then reminisced about when they had been children. He talked directly TO Anthony and, even though Ants wasn’t very vocal, he was responsive and he easily recognised this lovely couple.

It was a wonderful hour or two and, as I was walking the nephew and his wife out to their car, she admitted to me that she’d been a bit nervous, had wanted to remember Anthony as he was, but now felt reassured about how he IS.

The next day, I reminded Anthony of this visit, and his three-syllable, whispered response was “DELIGHTFUL”.

Okay, so that should be the punchline, but it isn’t. What I have learned from this visit, and from the frequent visits of other relatives and friends, is that speaking TO Anthony, no matter how unresponsive he seems, is vital.

It is unavoidable, of course, that, in a situation like this, we will also speak ABOUT him in front of him and I always find this TO-versus-ABOUT very difficult. It feels a bit disloyal to me; that weird scenario between being with the person who is being spoken to versus the scenario in which the person is being spoken about.


Once upon a time 3

At some point in time (I think she was 22) the young woman decided to put some geographical distance between the dairy farmer and herself.

Ironically, it was he who picked her up from her mother’s house, and drove her to the airport. She had dressed up and put make-up on; the photograph her mother took shows a very handsome couple with too-wide smiles.

In the plane, on the way to London, the young woman tried over and over and over again to drop her burden of love into the various oceans, islands, and even into the black of night. But it was such a massive bubble, this wonderful love, that it lost its footing during a particularly difficult gravity experiment.

It (the love thing) floated easily up into the sky-clouds and had a bit of a rest.

The dairy farmer drove back from the airport to the farm.
The young woman began her ‘nanny’ job in London.



Anthony’s voice has become so soft, he is hardly audible now. How did this happen so fast? One minute I am jotting down his brilliantly cryptic phrases, and the next he is unable to utter a single word.

Parkinson’s disease (in all its variations) has such a conglomeration of symptoms, the tremor symptom being just one, that it took years to figure out what the hell was wrong with Anthony. Understandably, perhaps, I just thought he was getting old really fast.

As Ming grew from baby to child to teenager, Anthony’s usually loud voice gradually lost its point, its force, its boom.

So, from now on, I will be listening to his whispers more intently than usual. He will have to check with me re the placement of every single comma!

The recent rumour that Ants was near death absolutely infuriated me!