wings and things

Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.



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.


These boots were made for walking ….


I have just returned from a delightful couple of days in Perth with a wonderful friend. She flew down from up north and I drove up from down south and we stayed at a beautiful resort, shared some fine wine, extraordinary pizzas, watched a very complicated movie twice (because we didn’t ‘get it’ the first time), and enjoyed chef-styled breakfasts each morning.

It was brilliant! We each had various big-city things we had to do so yesterday we went our different ways for a few hours and I visited my friend, Rose, at Dimario

Dimario is a shop that is close to my heart for many reasons (for example, I love boots). But the main reason is that several years ago, when Anthony wasn’t so ill, we walked in and I fell in love with a pair of boots that were extremely expensive and extremely beautiful. Ants and I had to go back to our hotel room to mull it over and, despite being a rather scroogy careful-with-money person back then, he wanted me to have those boots.

From then on, whenever we went to Perth (which was only once a year), Anthony would actually suggest going to Dimario. Rose and Nikki would welcome us like old friends and Ants would watch as I tried the various boots on, usually convincing me to get the better, more elegant and expensive ones.

Then, one year, it became too hard for him to get out of the car; another year, it became too difficult for me to take him from the hotel to the shop, so I went by myself; another year, he was in a hospital in Perth having his Parkinson’s Disease medications reassessed; another year Ming came with me and cloned Anthony in picking out the best pair of boots; another year we didn’t go to Perth at all as Anthony’s health had deteriorated too much. I guess that was around four years ago and my memory of this phase in our lives blurs a bit around the edges.

To see Rose again yesterday, despite the fact that it’s probably been a couple of years now since I visited her gorgeous shop, was incredible. I was greeted with a hug!

Rose: And how is your beautiful husband?

Me: He’s in a nursing home now but he still remembers you and I need to buy some boots so I can wear them to the nursing home and remind him again.

Rose: I will always look after you; what about these?

Me: Not me – I rather like those….

Rose: And how is your beautiful son?

Me: Still beautiful. What about those embroidered boots?

Rose: They’re on sale – let me see if we have your size.

Rose then told me that Nikki had retired but had a pair of the same boots and I asked her to give Nikki our love. She said she would, then, when the boots were a perfect fit, Rose discounted them even further, I bought them and we had another hug as I left.

After that, I picked my friend up and we went back to the resort. We shared a mutual admiration of our purchases then began (again!) to watch the stupid movie and order pizza.

Today, I dropped my friend at the airport and headed home. We are going to meet like this every few months; it’s a wonderful arrangement and, even though she and I have lost touch on and off over the decades, we are still the same buddies we were as teenagers.

And I can’t wait to show Anthony my new boots tomorrow!




Ming and I have very different priorities which is not unusual in a mother and son relationship. This means that he has had a rather bemused, and sometimes annoyed, attitude to the last few weeks of what I have decided to call my “house to home” project. And, due to his man-of-the-house attitude we have had a fair few power wrangles.

So I didn’t tell him that I had booked a lovely couple who run a business called ‘Household heroes’ to clean the windows inside and out. When I accidentally let it slip that they were coming on Monday, he became angry and this was our rather fraught conversation:

Ming: Why didn’t you tell me?
Me: I thought we agreed last week that I was the boss.
Ming: Well, why didn’t you ask me to do the windows? I should be doing it!
Me: Because you’re working full time and actually I think I did ask you.
Ming: No you didn’t!
Me: Well, maybe I hinted that we could do it together?
Ming: Why don’t we then?
Me: So do you want me to cancel the window cleaning people and we do it ourselves tomorrow?
Ming: But tomorrow is my day off! I want to have fun!
Me: In that case, could we do it together next week?
Ming: What’s your problem with the windows anyway, Mum?
Me: They’re dirty.
Ming: So?
Me: I want them to be clean.
Ming: Why?
Me: Because they always used to be clean and now they have been dirty for three years!
Ming: So?
Me: Okay so you want me to ask you to help me with the windows but you don’t really want to and you don’t care that the windows are dirty?
Ming: I don’t care at all!
Me: In that case, I won’t cancel the window cleaners, okay?
Ming: Fine then!

Yes, Ming and I have quite a lot of these circular conversations but, in the end, we can usually stifle our different priorities in order to watch Game of Thrones in the evening.

So the window cleaners came on Monday and did the most fantastic job over nearly four hours, Dina and I decluttered the wash house at the same time, and Ming skedaddled!

The following photos are not remarkable in themselves; what is remarkable is that they are all taken through clean windows. Hurray!


The thing is, I do understand Ming’s feelings of alarm at all of this tidying up because I guess he has become used to a mother (me) who has been sort of stuck for so long that he has forgotten the lightning speed with which I used to get things done – ha!

And tonight he is making dinner for me! Hopefully this will become a new priority for the Ming – gotta love him!


The rule of “good morning!”


Ming is so funny. If I forget to say ‘good morning’ he gets absolutely furious! For example:

7am: Ming gets up, gets his breakfast and turns the television on.

7.15am: I get up, put the kettle on and turn my computer on, remember I need to ask Ming to help me figure out an email glitch. I go into the living room where Ming is munching his cornflakes.

Me: Do you reckon you could help me figure out this email thingy?

Ming’s face contorts with fury.

Me: I mean not now but when you’ve finished breakfast. Plus the shower is still blocked – we need to get a plumber and….


Me: Do what?


Me: I’m not….

Ming: AND JOBS!!!

Me: Sorry but….


Me: Oh, I see. Good morning, Ming!


Me: You’re absolutely right, Ming, I just forgot.


Me: Okay, I’ll just go out and come back in again.

Ming: GOOD!!!

I go out and come back in.



Me: Okay, so when you’re finished eating could you help me to….



A sublime sense of space

Dina, from Chaos to Clear came over this morning to help Ming tackle this:


Some of the stuff in this particular area was paperwork that I either didn’t know what to do with, didn’t recognise, and didn’t even remember putting there. But most of it was Ming stuff – lego (and lots of it!) brio trains and tracks, and a whole lot of other ‘things’ from Ming’s childhood. As this was Ming’s first experience of decluttering his own stuff with Dina, it was interesting to see his initial reluctance transform into a very healthy ruthlessness and we filled four garbage bags and two boxes with rubbish to be taken to the dump – wonderful! It was also quite moving to see what he was still sentimental about:


While this was happening, I sorted all of my plastic containers, got rid of all my old cook books and only put the Aga cook books in the kitchen drawer, and put all of the paperwork we found into the filing cabinet that is now functioning as a proper filing cabinet thanks to Dina’s labels. Bliss!



For me, the sense of space that has been created is the most wonderful thing! I have never known a cupboard, shelf or drawer in this house to be empty before so I am having a lot of fun thinking about how I can use these empty spaces. Wonderful!




And this is the beauty of Dina’s service; she helps you to cull, but she also helps you to put the things you want to keep back into the new spaces. Dina is way more organised than I will probably ever be, but she has given us such wonderful help and tips and sympathy!

She has also given us her friendship and is even happy to come and help me take Anthony out on occasion. Thanks again, Dina, for your tact, efficiency, respect and empathy. You are a wonder!

We even have a box of stuff to go into the nursing home.


From panic to pause….

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!


Christmas Eve’s eve

Well, it’s the day before Christmas Eve and I am finally ready to be festive. My rather blah mood was transformed into enthusiasm after having breakfast with my mother the other day because we went shopping together and I found some things that I hope Ming will love even though he ruled that it should be a strict 3-gifts-per-person Christmas. Unfortunately I take great pleasure in breaking Ming’s rules so there are now 20 presents under the new little Christmas tree he bought. I thought that was a good number since he is still (until January) 20 years old.

Oh how I miss the pillowcase years (a habit inherited from my parents in which an empty pillowcase was placed at the end of each of our beds and on Christmas morning would be filled, rather miraculously, with presents). Up until just a few years ago, I would send Ants and Ming to bed and would spend the late hours of Christmas Eve wrapping presents and putting them into an identical pillowcase (just in case Ming woke up). Then I would go to bed but wake up at around 4am to swap the empty pillowcase with the full-of-presents pillowcase. Alas, those exciting, magical days are long gone. Last year we didn’t even ‘do’ Christmas because we were too sad about this and that and, until a few days ago, I felt the echo of that sadness and an inability to be bothered.

Then, all of a sudden, a wave of hyperactive nostalgia hit me and I was filled with the energy of what Christmas really means – the birth of something/someone miraculously new – a Jesus moment, the memory of when Ming was born, a newfound excitement about seeing Anthony every today, so ….

…. I decorated Anthony’s nursing home room and sticky-taped old and new Christmas cards on his mirrors and pictures, draped the clock with tinsel, decorated the rose tree I bought him the other week, that looks real, with baubles and wrapped Ming’s presents in his room. You see, we are having Christmas in the nursing home this year; it will be the first year that he hasn’t been home for Christmas and it wasn’t until yesterday that Anthony realised this.

Ants: I’m a bit taken aback.
Me: Why? What’s wrong?
Ants: I thought it would be at Bythorne (the name of our farm).
Me: Are you kidding? It’s too hot and the flies are terrible out there! Anyway I like it here better! Don’t argue!
Ants (smiling at my sternness): Okay, you win.

Today I will wrap Anthony’s presents in his room while I face him towards the window so he won’t see; then I’ll sticky tape more cards around his room, then we’ll have a small glass of champagne together with a bit of mango (a great combination I discovered the other day).

Tomorrow night, various members of the family who can make it, will meet at my mother’s place for the traditional Christmas dinner of turkey, ham, Harvard beets (my mother’s specialty) etc. but I won’t tell Ants about this because it would be impossible for him to join us now that he is so incapacitated physically.

Then, on Christmas morning, Ming and I will open our presents to each other, saving a few to take into the nursing home at around 10am where my mother will join us at noon for my crayfish cocktail and some champagne. At 3pm I will head off to the dementia wing for my afternoon shift, Ming and my mother will go home, and at 6pm I will go back to Ants’ room to say goodnight.

A ‘Jesus moment’ – over and over and over again.


Would you rather …?

The storybook that my mother, Meg, read from on her 8oth birthday cruise last weekend was one of her grandson’s favourites when he was little. (Thanks Morgan!) Here is a link to it on youtube

Meg brought the book with her and insisted that all of the grandchildren sit on the floor of the boat despite the fact that half of them are now in their 20s and even the youngest (12-year-old twins) are close to 6 feet tall. Then she began to read and something rather magical happened as they were all catapulted back in time and transformed into giggling little kids in the thrall of Grandma. One of the most hilarious moments was when my mother said to one grandson, in her best school teacher voice, “Rohan, pay attention!” Everyone collapsed into laughter as this big ‘boy’ – now a husband and father – obeyed. Then everyone competed, hands raised, to answer the questions posed on each page of the book.



In googling information about this storybook, I discovered that “Would you rather …?” has become a bit of a party game and I can see why! It was one of the highlights of a perfect day.


Blogging update

I’m gradually (and unguiltily!) getting back to reading, and commenting on, other people’s blogs, and re-subscribing to those I have lost touch with. Like many other bloggers, I feel such gratitude for the community of friends I’ve connected with over the last three years. The fact that I can’t consistently keep up with everyone’s posts no longer bothers me and it is quite a relief to dip in and read when I can, comment if I want to, and not read any blogs if the day is too busy. Having said that, I am very appreciative of those friends who continue to give me their support and friendship. It has been an extremely difficult year for my family, but things are finally returning to normal, whatever that is.

Perhaps my blog-reading will, from now on, resemble the unpredictability of Ming hanging out the washing!

photo (6)

The expression on Ming’s face here is exactly the same as when he sees his name in one of my blog posts – ha!