wings and things


There is always a dilemma when you want to write a story that might hurt other people the way the story’s reality has hurt you.

Recently, I have wrestled with how to reconcile forgiveness with writing the truth of my decades-long relationship with Anthony, including all of the pitfalls.

The “love story” and “once upon a time” posts began to retell a story that has already happened. But, as soon as I ventured into writing the ugly bits of the story, I received some pretty nasty flak; some advice to be careful what I write;  and, paradoxically, some encouragement to keep writing the story; etc.

So, in order not to upset people, I’ve decided to continue writing this story on a different blog – an anonymous platform – from which I can divulge, in story-telling detail, the truth.

In the meantime, this blog will remain positive.





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….






“Ming the Merciless”

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!


Ten more minutes

Tonight, I went to see Ants later than usual because I had a party to go to later that evening. I arrived at 6pm to find him in bed, propped up comfortably and watching television. I pulled my chair close to the padded rail on the left-hand side of his bed, muted the television, kissed him and grabbed his hand.

He was very blank to begin with and, because he hardly blinks, his eyes were wide and a bit  confused. Our conversation wasn’t particularly animated because his voice was a whisper

Me: You look like a stunned mullet!

Anthony: You are ….

Me: Are you tired?

Anthony: Yes.

Me: Well I am going to a party soon but you can stay put. Is that okay?

Anthony: Yes.

Me: It’s L’s party; she’s graduated and now has her PhD. You remember L?

Anthony: I think so.

Me: May I change the station to the food channel?

He didn’t respond so I did so anyway and we watched a chef put together a delicious meal.

Me: This is making me hungry, Ants.

Anthony: Is there any chocolate?

Me: Yes!

One of our closest friends, M, provided a massive amount for Christmas and he has only gotten through half of it. So, one by one, I popped a few treats into his mouth because his hands weren’t working. (Around a year ago Anthony seemed to partially forget how to feed himself so, if I were there at mealtimes, I would feed him. We would joke about this and I would exclaim, “Feed yourself for goodness sake!” and he would say, “It’s more sexy when you do it.” I would laugh and laugh and he would smile.

Anthony has now become one of those residents who often (mostly?) has to be fed. But that’s okay because at least he still has an appetite and can still swallow adequately enough that his food doesn’t have to be mushed.

My plan was to leave the nursing home at 7pm, drop in to see my friend, N, on the way to L’s. I told Anthony this a few times as I was saying goodbye to him, then N rang to say she was running a bit late.

Me: Ants, I can stay another 10 minutes.

Anthony:  I am enjoying myself.

Me: Can you enjoy yourself when I’m not here?

Anthony: Yes.

My heart relaxed and I put my hand into his again and squeezed it and he took my hand up to his mouth and kissed it.

Ten minutes later, as I got up to go, he looked at me, his eyes wide, but no longer blank. I looked back, kissed him goodbye, and told him I would see him tomorrow.

Anthony: Ten more minutes?

Me: Yeah we’ve already had those. I love you so much, Ants!

Anthony: I love you too, Jules.

I have been so terribly sad lately that blogging seemed too hard, and responding to others’s blogs even harder, but I think I might have my writing voice back now. I hope so because I really want to write about this experience with Anthony, and Ming too; I really want to re-experience and express how beautiful ten minutes can be.





Yesterday I wrote a post which I later edited because my grief sometimes interrupts my sense/ sentence structure. And I get worried that I might unwittingly upset someone good in Anthony’s family.

Candy is one of Anthony’s many nieces; she is also his god-daughter and Ming’s god-mother. But she and her husband live a long way away, up north on a station that suffers frequent droughts.

Her brother (the nephew who visits Ants every weekend), often brings Candy’s letters to read to him. I keep these in Anthony’s top drawer and often re-read them to him, which always makes his day!

Maybe this is an idea that could work? Maybe friends and relatives could email me these letters and I could read to Anthony?

Every time I read a Candy paragraph, he smiles. Thank you, Candy.




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.’





Anthony’s 80th birthday





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.