wings and things

‘Who’s that silly old fool?’

I showed Anthony these photos just after I took them with my phone the other day. They’re a bit blurry and way too close-uppish but I wanted to show him what he looks like sometimes.

The first photo shows his usual facial expression. This is often termed the ‘Parkinson’s mask’ and is due to the fact that the facial muscles aren’t working very well.


Anthony: Who’s that silly old fool?
Me: It’s you!
Anthony: Ghastly.

So then I tried to make Anthony look me in the eyes by shouting “Look me in the eyes or I’ll bop you!” Ants and I have discovered that this rather dramatic method works well.


Anthony’s smile, trapped for so long inside that Parkinsonism mask, has, as I’ve said before, begun to occur more and more.

Ming disagrees with me because he says that whenever he enters Anthony’s room, he is greeted with that smile. What he doesn’t realise is that his visits are excitingly unexpectedly haphazard, whereas mine are (perhaps) boringly regular.


When I showed Ants that last photo of his smile, he took my hand in his and kissed it exactly ten times before saying…

Anthony: Who’s that silly old fool?

Me: My hero.


An auspicious occasion

Here is a photo of my dearest old friend and me at his wedding brunch the other day.


My dearest old friend, who I have known for over 40 years, got married last week and on Saturday morning a group of us celebrated at a beautiful apple orchard up in the Perth hills.

My dearest old friend, and his partner of 17 years, exchanged rings, and spoke of their love for each other eloquently; a priest, who has known my friend for longer than I have, gave a heart-felt blessing; and then two other friends toasted the happy couple. I had the honour of sitting on my friend’s right hand side during a delicious brunch.

My dearest old friend makes me laugh like nobody else can, cooks the best shepherd’s pie ever; performed Anthony’s and my own wedding ceremony; and was the first person (other than Anthony) to see baby Ming.

My dearest old friend is the only person in the world who can convince me to wear ‘a frock’ (well, I compromised by wearing a skirt).

I am so happy for my dearest old friend and his partner!



Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!



There’s ‘a Julie’ in the mirror.

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.


The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….


…. like the camellias.


A brief moment of panic

Yesterday morning I received a phone-call from the nursing home manager to say that Anthony had had a ‘turn’, most probably a TIA (transient ischemic attack or mini-stroke). He has had these before but this time he was unresponsive for ten minutes.

As I rushed into town, I experienced a brief moment of panic even though I knew Ants had recovered from the TIA, because the more of these he has the more likely it is that he will have a serious stroke. On the other hand, he has been having TIAs from well before I knew what they were and twice, when he was still living at home, I had to call the ambulance. And, during his years in the nursing home I suspect he has had more of them than anyone realises because he sleeps a lot anyway.

Four years ago, at the huge 75th Ming and I held for him here, I remember being fairly certain it would be Anthony’s last birthday. His prostate cancer was well advanced and so was the parkinson’s. Daily tasks had become extremely difficult for him and I was exhausted. Perhaps it was this exhaustion that made me more accepting of the fact that he might die soon.

But now that all his care needs are fulfilled by the nursing home and I have the leisure to simply enjoy Anthony’s company, the thought that he might die soon is unbearable. Having outlived his prognoses by several years already, I have become used to the idea that he will continue to live for a long time.

So the thought that he might either die or become even more incapacitated by a stroke is horrifying. I can’t imagine my life without him but maybe I should prepare myself a bit. Who knows?

Anthony’s fortitude amazes me; he is so resilient! When I said to him yesterday, “You had one of those mini-strokes again, Ants”, he retorted, “No I didn’t – I just fainted.”

But for the rest of the day he kept hold of of my hands with both of his until I left to come home with the usual goodbye.

Anthony: Don’t be long, Jules.

Julie: I’ll be back soon, my beautiful man!




Blogs can be like those really difficult jigsaws that it might take you years to complete but, at the end, you can’t quite complete because of all the missing pieces. You know exactly what those missing pieces look like, and how they are shaped, but you have to accept that they have probably been gobbled up by the vacuum cleaner, then used to make a bird’s nest; they’re gone but not gone.

Some time ago, I paid a small amount to have my blog converted to book-like format so that I could print it out. The reason I did this was not so that I could admire my clumsy, incoherent handiwork, but so that I could re-shape it into some sort of coherent story about Parkinson’s disease.

Okay, so the PDF conversion meant that it would print from 2011 to now rather than backwards-in-time. Because each year consisted of hundreds of pages, I ended up with seven PDF files and happily printed out one and a half of these files until my printer

Well, after weeks of wrestling with/ coaxing/ swearing at /wanting to OBLITERATE/ and finally giving up on, my uncooperative printer, I came to my senses and put all of the files onto a usb and took it into a print shop. Half an hour later


Now, hopefully, within nearly 3,000 pages of blog words and images – a jigsaw of thoughts and emotions spanning nearly four years – I will find something that is worth editing into a useful and publishable book.



Leaps and bounds!

Gardening: I have planted vegetables in one of the beds that Jake (my lawn and gardener friend) has created for me. I have no idea whether these lettuce, cucumber, corn, parsley and tomato seedlings will grow up but here’s hoping. I’m a bit too nervous to ring Jake and ask if I have planted these things in the right places – i.e. should they be in the grave-like mounds or in the gullies? Just in case, I did both.


Chooks: Six quite different chickens are gradually getting used to each other with minimal violence. They have a lovely yard so hopefully peace will soon reign.


Lunch: I seem to be going out to lunch a lot lately which is something I only ever did very occasionally before Anthony went into the nursing home. This feeling of freedom is relatively new to me. It was always there of course and Anthony was never one of those dominating, bossy husbands who insisted on the adding cream and more butter and salt to the mashed potatoes. Wait a sec. – yes he did!




Parallel universe

I think one of the things that is most bewildering, if you are caring for someone with dementia, is the fine line between present-tense lucidity and remembered lucidity.

For example, when I visited Anthony the other day, he was eager to tell me the latest news:

Anthony: Have you seen the news, Jules? We have a new prime minister.

Me: Yes, I saw that too.

Okay, so the above shows how absolutely ‘on the ball’ Anthony can be especially when it comes to current events. I always leave the news channel on his television before I come home because he has always loved watching the news.

But the very next thing Anthony said amazed me ….

Anthony: Mum will be shocked!

This is the kind of conversation that always gives me pause as I try to process the fact that Anthony has, within less than a minute, conflated the reality of now with the reality of over three decades ago. It sometimes seems extraordinary to me that Anthony can so expertly move between eras in the space of a couple of sentences.

Perhaps this is why what used to seem tragic to me has now become fascinating, and sometimes even comforting. After all, I loved Anthony’s mother, who we younger ones called ‘Gar’ so I was catapulted into nostalgia-land briefly, remembering her canny opinions on politics.

Me: Do you think she approves of the leadership change?

Anthony: Yes, but is she all right?

Me: She’s fine, Ants.

One of the last things Gar said to me as she lay in the hospital bed, dying, and I held her hand, was, “You will look after Anthony won’t you”, and I promised her I would. When I made that promise, Ants and I were still eons away from having a romantic relationship, let alone a marriage! So, in retrospect, it was a bit of a far-fetched promise, but I meant it.

Of course, as a teenager, I had no idea how things would all unfold. It is uncanny now to be reassuring Anthony (who is approaching the age Gar was when she died) that she is all right.

‘Parallel universe’ seems to be the phrase that best describes the strange but wonderful space in which Anthony and I connect, cognitively and emotionally.


The carer who “loves” dementia!

Jodie Desilva works as a carer and supervisor at the nursing home where Anthony lives, her favourite area being the dementia cottage. She has such a gentle manner, and exudes such calm, that whenever I was working with her, I felt a sense of great peace. I noticed, too, that the residents were also affected in very positive ways by her contagious serenity.

On beginning her shift, Jodie will always distribute her latest acquisitions around the cottage: second-hand scarves, hand-bags, mirrors, and all sorts of colourful, miscellaneous objects. In doing so, she transforms the living areas – dining and television rooms, entrances and hallways, into a mosaic of colours, interesting objects, and cosy busyness. The ways she does this – so quickly and yet so unhurriedly (this is probably the definition of ‘efficiency’!) – is testament to her gentleness.

But it was the way Jodie related to the residents with dementia that most struck me. If A. wanted to know where her (deceased) husband was, Jodie would give her a hug and reassure her that he’d be back soon; if B. refused her dinner, Jodie would ask her what she wanted instead (for example, a sandwich); if C. started screaming “get the cops!” Jodie would humour her into a laugh.

It was during one of these laughing moments that Jodie looked at me and said, “I LOVE dementia!” Her compassionate giggle, her hand resting on the shoulder of one of the residents, her total ease in the company of so many people with dementia was/IS moving.

Jodie’s comment about loving dementia makes a hell of a lot of sense to me now. After all, in terms of Anthony’s encroaching Parkinson’s disease dementia, there isn’t much point in me hating it when we have both now accepted it. But to love it? To love dementia? That idea has taken me a bit longer to absorb. It certainly hasn’t been a problem for me to love Anthony of course, but to love his dementia?

Then all of a sudden it strikes me; I have been loving his dementia; I have been making his room more colourful; I have been laughing more with him; I have been coping better; I have been exuding my own sense of peace….

Thank you, Jodie Desilva, for your wisdom and your personal kindness to everyone you meet at the nursing home (and elsewhere I’m sure). I salute you.


Missing Ming

Ming has met a beautiful girl and, as a result, I hardly ever see him, except fleetingly.

Of course I still hear him climb in the front window in the early hours (because I keep forgetting to have a second key cut, but I did remember today!)

And, occasionally we indulge in leisurely conversations during the five seconds he has left to get ready for work.

Me: Good morning, Ming! I shout from my bed.

Ming: Morning, Mum. What do you want? he shouts from the bathroom.

Me: Oh, darling, I don’t want anything! How’d the party go?

Ming: I don’t have time for this morning conversation thing, Mum. Can you just leave me alone so I can get ready for work!

Me: Okay, sorry.

It’s all a bit surreal for me. Of course I haven’t actually lost Ming, and I always knew that one day he would meet someone who would both challenge and embrace his opinions, personality, habits, originality.

The beautiful young woman with whom Ming is involved has a similar ‘old soul’ wisdom to his but is much more academic. Every time I meet her, I am impressed by her integrity, and honesty, and the way she looks at Ming.

So, yes, I miss Ming in the sense that I don’t see him as often as I used to. After all, why would he want to be home with me when he can be out and about?

Nevertheless, I always knew that one day I would be without Anthony here (already happened), and maybe without Ming here (happening).

Hence the birds:



I am so proud of this Ming of mine.