wings and things


It was hilarious the other day when Anthony’s favourite nurse was teasing him about something and, all of a sudden, he surprised us both by growling at her!  He launched himself out of his usual slump, met her nose with his, and said, very clearly “GRRR!” This resulted in all three of us laughing.

This kind of banter is, I think, what keeps Anthony on an even keel, emotionally. And the fact that this particular nurse is familiar to him is vitally important in terms of his health and well-being.

Oh how much I hope that this nurse doesn’t leave! If she even hints at that possibility, I may have to send her a “GRRR” of my own!







Nothing/everything has changed

I feel a sense of trepidation, re-entering the blog world after what seems a very long time to me, but is actually only a month. It has been wonderful to be free of the compulsion to both write and read but it’s also very difficult to avoid the guilt; after all, blogging is a reciprocal activity.

Some of my blog friends are also Facebook friends so, to the latter, I apologise for any future repetition but I have been trying to write 500-word column-type articles about Dementia. The reason for this is that I’ve begun volunteering for various organisations that work hard to ensure the ongoing improvement of Dementia care in Western Australia.

The fact that these organisations have welcomed my input so warmly has motivated me to write, network, and speak much more vociferously, about Dementia care, and the opportunities are opening up! This is very exciting for me as I have been a fairly silent, but passionate, advocate for many years. There is a strange, yet wonderful, serendipity in the fact that I was completing my PhD about Alzheimer’s Disease and storytelling during my newlywed years. I had no idea then, of course, that Anthony would one day succumb to PDD (Parkinson’s Disease Dementia).

One of the most delightful things that has happened over this last month is that Ming, our 22-year-old son, also wants to share our story from his perspective. And I don’t think our story would have the same oomph without his input. Ming has, many times, saved me from despair, and vice versa; Anthony and I have the most incredible son with a capacity for empathy that beats the hell out of mine!

Anyway, this post is a rather clumsy re-launch of my blog. I am not going to try to catch up with others’ blogs for the time being, but will certainly keep in touch one way or another. I really just want to focus on Dementia for the time being.


Not blogging for awhile but everything is fine!



Anthony was weighed the other day and he is only seven kilos heavier than I am – 20 kilos lighter than he was a few years ago.

Despite the weight loss, his appetite is fantastic! The food at the nursing home is good and plentiful, with the main meal being lunch which is often a roast. Thankfully he has not yet graduated to vitamized food and, even if he does begin to have difficulty swallowing, I am hoping this will never happen.

I love bringing in treats, and sometimes the kitchen staff give Anthony an extra serve of dessert if it happens to be pavlova. But most of the desserts are served with ice-cream (which Ants finds too cold) so lately I have been bringing cream in which he absolutely loves. He is, after all, a dairy farmer.

The other day I brought a cheesecake, a ripe banana and some double cream and, in less that ten minutes, Anthony vacuumed it all up! But the thing that made this extreme dessert so wonderful was the ‘grit’.

‘Grit’ is the sugar sprinkled on top of already decadent desserts. The other day I forgot to bring the grit so as I was feeding him mouthfuls of cheesecake, mushed banana and double cream, he suddenly protested:

Anthony: Where’s the grit?

I rushed into the nursing home kitchen and snuck a bit of sugar for him.

Anthony: This is much better.





Health kick!

Over the last few weeks I have been making a determined effort to get healthier (you know, the usual things: fitbit, green juice, no wheat, organic wine, aromatherapy) and …

… exercise. Not happening, despite the fitbit!

So yesterday I went to one of the many gyms in Bunbury and tomorrow I will begin one of those 3-day free trials. I met one of the managers (D) and she was lovely. The gym isn’t big and flashy and has an easy-going atmosphere. D asked what I most wanted out of the gym and I said, “No tummy and stronger arms; I don’t want to walk or cycle in here because I would rather do that outside.”

Anyway, I’m quite excited about tomorrow. I’ve had gym memberships before but not for years so I will have to re-learn how to use the equipment.

When I told Ants he said, “Well, you’ll be battling to compete with my fitness” patting his flat tummy. He then proceeded to tell me that he did 25 push-ups per day and that I should try it.

Me: I can’t even do one push-up!

Anthony: That’s why you have your problem.

Me: What problem?

Anthony: The tummy (pointing to mine before I put one of his pillows onto it).

Me: Are you calling me fat? How DARE you!

Anthony: Jules, you know I’m kidding; you are perfect.

This verbal exchange was enhanced throughout by Anthony’s fantastic smile. I’m just glad he won’t see me struggling with the weights etc. tomorrow. I will paint a much better picture when I see him, so that he will be as proud of me as I am of him.

Me: Ants, I admire you so much, so much – the way you keep on being well and fit despite the Parkinson’s! And you never get down like I do. You are amazing.

Anthony: I know.

Me: Oh. Well, anyway, I’ll start the gym thing tomorrow morning  and come and see you straight after.

Anthony: I know [yawning]

Me: Sorry if I’m boring you!

Anthony: Off you go, then.

Me: What? Where?

Anthony: To that wildlife park…

I guess the health kick challenge is on!











To my son, on Mothers’ Day

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your birth.

You, like many other babies, wanted to stay safely within the parameters of life and death/inside and outside, but you eventually emerged. After too many hours, you were inducted out of your cubbyhole and splashed into the too-bright-light of a bassinet.

I have never loved anyone as much as you, my wonderful, winged son. Yes, we argue and disagree; yes, we agree and philosophise; yes we occasionally look for walls to punch, shoulders to cry into: yes.

Nothing can ever change the gift of you to us – to Anthony, to me, to the extended family. Thanks for being this gift, for being exactly who you are. We are so proud that you are our son, Ming!

Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your life.







I think that contentment is underrated. Anthony has always had it, and Ming has it too, whereas I have always struggled.

Lately, Anthony makes me feel the most wonderful calm; he is so accepting of what is (a huge lesson to me). Ming drops in between restaurant shifts and we all have a bit of a laugh at whatever show is on TV.

Today, after Ming left, this was my conversation with Anthony:

Me: We are all so lucky in our relationship with each other, Ants!

Anthony: Yes, we don’t seem to be losing any hours.

When I think about his words, I feel content.



“I love you” variations

I say this so often to Anthony that he has developed some rather cynical responses:

Me: I love you!
Anthony: Yes, I know.
Me: I LOVE youuuuuu!
Anthony: So you keep saying.
Me: Oh but I absolutely adoringly love you to the moon!
Anthony: Jules, shut up!
Me: But Ants, I love your big nose, your wide eyes, your weird ears!
Anthony: Your hair looks better.
Me: What?
Anthony: Stop fumbling.

I love him – I love our conversations, often full of mirth, irony, nonsense, joy, mystery and a strange sort of hope. Of course it wasn’t always like this; over the years it has been a very difficult transition from home to nursing home. Sometimes Anthony thinks he has just arrived so we have to go through the same initial conversation again.

What most amazes me is Anthony’s acceptance of what is. He has always been able to do this and is much better at going-with-the-flow than I am, and, incredibly, has never suffered depression. That illness seems to be mine alone and has been for some time and Ants sustains me with his incredible sense of humour.

Anthony: So why are you so down?

Me: What? Why do you think? You’re in a nursing home, Ming is down in the dumps, and I still haven’t produced that blockbuster novel.

Anthony: Don’t worry so much. I cleared the shed out and re-painted it and it looks wonderful.

Me: When did you do that?

Anthony: Yesterday.

Me: Well no wonder you’re exhausted!

Anthony: Jules?

Me: What now?

Anthony: I love you too.










My mother, Meg, and I made the trip down south to see her fourth newly born great-grandchild/my second great-niece. This entailed several hours of driving; we all wish we lived closer – oh well.

When we finally got to the hospital and the new baby was in my mother’s arms, my first nephew, Jared (the father), quietly announced that their little girl’s middle name would be ‘Meg’. My mother’s eyes filled up with tears and so did mine and all of ours! There was a great deal of happy emotion in that hospital room with lots of laughs too. For my youngest brother, who I won’t name because he prefers privacy, this beautiful little girl is his first grandchild.


I’m so grateful for this ever-increasing family. It is impossible now to keep up with every single nephew, niece, sister-in-law, nephew-in-law etc. etc. so I probably haven’t been such a wonderful aunt/great-aunt. But Meg is amazing! She knows every single child’s birthday, wedding dates for all of us, significant occasions etc.




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