wings and things

The only child

Anthony and I decided to just have one child, Menzies (Ming). I don’t quite remember now why we made this decision but it was probably due to the fact that Anthony was already nearly 60 when we got married. I do remember, however, that this was a mutual decision.

Now that Ming is 21, Anthony is in the nursing home, and I am once again a lady of leisure (ha!) it is with some astonishment that I look at this boy/man. How on earth did Ming survive all of those years of Anthony’s illnesses? How did he manage, as a teenager, to share the ‘night shifts’ with me? How did he put up with my anxious, endless tears? How did he not mind the way I would escape to my office when I came home from my job at the university? How did he cope with the fact that our once boisterous life became so quiet and desolate as Anthony’s Parkinson’s disease encroached? And how did Ming undergo his two spinal surgeries, give up football, his dairy farming job, and motorbike adventures, with so much dignity and acceptance?

I am so proud of him. Ming is the loud, boisterous epitome of how Anthony once was; he is the life of the party, the polite guest, the gentleman; he is never shy but often uncertain. Last night I came home to see him on the front lawn with his arms outstretched. I stopped my car on the driveway and rolled down the window and this was our conversation:

Me: What are you doing?
Ming: Just wanted to greet you with a hug!
Me: Why?
Ming: You are the only person I really trust.
Me: I visited the women in the dementia cottage today.
Ming: Why?
Me: Because I love those women! It doesn’t matter that I’m no longer employed – I can still visit.
Ming: You are the most beautiful woman, Mum, I really mean that.

So proud – our only child.



Okay so I’ve been reading Tolle and trying to do all of that ‘being in the now’ stuff and I think I have a better handle on things.

In dementia there seems to be an unhappening; today is simply today, this minute, second, moment is just that. Memories are painful and confusing and the future is bleak. Now becomes all-important.

So today I visited my friends in the dementia cottage with a completely different attitude. As an ex-staff member I felt the wonderful freedom of just being a visitor!

I did a whole lot of hugging today.



Yesterday, a nurse and her husband visited the nursing home with their beautiful newborn in his pram. I bumped into them in the hallway outside Anthony’s room and was absolutely thrilled to see this beautiful baby and asked them if they could wheel the pram into Anthony’s room so he could see the baby. Of course they were delighted to do so.

But then everything went wonky. For the entire afternoon, Anthony was distressed about the baby.

Anthony: We already have one; we don’t need another baby.

Me: He isn’t our baby, Ants! They just wanted to show him off to you!

Anthony: Where’s the baby?

Me: He’s gone home with his parents; he isn’t our baby, Ants!

Anthony: I’m worried about our baby.

Me: Please, Anthony, he is not our baby; they were just visiting!

I was with Ants for the whole afternoon and, every time he woke up from dozing, he became anxious about the baby. I have never seen him this confused before so I guess we are entering a new phase.


Just being there

One of the things I’ve learned over the last year or so is that I don’t need to do anything, go somewhere, think of an activity, plan an event, force Anthony to converse, figure out how to get loved ones to visit him more, stress myself wretched with ideas of how to make his life better … I just have to be there.

So that is what I do now – an undoing really – a breath-saving realisation of how simple it is. I sit next to this beautiful husband of mine, with my hand on his shoulder, or stroking his head, watching television, talking about the past, sharing secrets, rejoicing in our son, Ming, smiling at each other, joking about silly things ….

We are so conditioned to do, do, do! It is such a great relief to simply be there, to embrace the long stretches of silence when Anthony is dozing, to quietly rejoice in the fact that our love has not been diminished by his disease, to just be.


Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”


A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.


On-line/off-line dilemmas

With the blog I write here (we can just forget about other blogs I hoped to establish ha!) I really don’t quite know, or even remember, how it all began. Okay so it was my friend, Nathalie, who first suggested a blog so I began to write one and even included photos.

Fast-forward to now and I have learned a lot about the politics, joys and disappointments of blogging. WordPress is a blog-site I would recommend to everyone and I have had the most wonderful fun, made friends, and connected with people and groups who share their photos and stories beautifully.

But I just can’t keep up with reading, commenting, replying and so on; the blogdom for me has become a bit of a problem. I so admire people who CAN keep up and feel really guilty for not replying to comments etc. My gratitude to blog friends is difficult to describe; how people who are unknown to me have become known friends – extraordinary!

Anyway, I’ve decided to go off-line for a week or two just to remind myself what it feels like to be off-line. Oh yeah, and I’m beginning to ‘get’ Tolle’s NOW thing!




Such a strange realisation!

An ‘aha!’ moment!

The inability to get to the ‘finish line’ or the ‘punch line’ was making me utterly miserable (as well as my inability to understand/implement Tolle’s NOW concept, cope with a depressive episode, watch myself grieve for Anthony in a way that seemed premature).

But it wasn’t any of those bracketed BIG things that were bothering me; it was the fact that the few remnants of weeks and weeks of decluttering, finding history, reorganising the house/farm etc. were still here.

It was the remnants!

Old books, doilies, Anthony’s school report from when he was little, old photos of my dad when he was young, bark paintings from our years in Papua New Guinea, a thousand buttons, a pile of costume jewellery, a silk corset and bra wrapped in newspaper for 100 years, bits of china that would be valuable if not cracked, old instruction manuals from before I was born, and a whole lot of bits and pieces that must have had sentimental value for someone before Anthony was born, and maybe even before Gar, his mother, was born.

So today I began this last phase by going to the dump with Ming and unloading a very full ute-load of rubbish; then I proceeded to use a knife to cut up a very big carpet mat underneath my bed (it had to be cut up to be manageable) and Ming helped me. The dust that came out from beneath that ancient carpet was justification enough to get rid of it – wonderful!

And now I have contacted the heritage park people to come over for a final browse, I am going to advertise the gramophone and other items online (once I figure out how), and I’ve already boxed up historical material for the relative who is interested.

Every single photo/photo album in now in Anthony’s cupboard so I just have to do the scanning bit by bit by bit whilst being with him.

And my point in this ridiculously self-indulgent post?

I was stuck at the ‘unfinish line’ and now I’m not. Full steam ahead!

Very grateful for comments and am going to reply to them now. I don’t even ‘get’ why I had such a downer when my new neighbour/hairdresser, Camille, made my hair a wildish red, I met my beautiful mama for lunch on Friday and laughed my head off, met with my best friend Tony yesterday for lunch and Ming bought me Dylan Moran tickets for my Mother’s day present – so many great things.


Oh and Dina is coming for dinner in a couple of weeks (well, she is coming to cook risotto in her thermomix) so I better get finished with these remnants asap.

My conversation with Ming a few seconds ago:

Me: I’m over my blah finally, Ming.

Ming: How’d you do that?

Me: Got a few things done I guess.

Ming: Jobs, jobs, jobs!

Me: Well we had a lovely time at the dump today didn’t we? [At the dump Ming had yelled out, ‘Mum, this is glorious! We’re not fighting! What a beautiful dump run!’]

Ming: It’s probably due to Sontime.

Mmmm – that is definitely an unfinished conversation!


I miss Anthony so much ….

I have had a really horrible week – restless, agitated, depressed, apathetic, confused, overwhelmed etc. Partly this is to do with beginning (again!) to read Eckart Tolle’s book, The Power of Now, and subsequently failing in my attempts to stop thinking which is much more difficult than it sounds. It is also due to Ming’s near accident the other day and my psychosomatic reaction. I miss Anthony so much. I do understand that a racing mind can be detrimental to overall health, especially mental health, but the more I try to stop my mind racing, the more it races – argh! I miss Anthony so much. Also, after many months with being/feeling okay about Anthony being so debilitated, and spending many hours of most days with him in his nursing home room, I have suddenly been struck with a new sensation – loneliness. I miss Anthony so much. I’ve never felt lonely before: I love being alone, and I have so many friends, so the reason for this new lonely sensation only hit me today, and it hit me in a storm of hail-stone memories. I miss Anthony so much. Perhaps, Tolle is right in that every single moment I spend with Anthony in the nursing home becomes the new now and, yes, those moments are wonderful. But I miss Anthony so much.


The weird experience

The other day I met one of my brothers, BJ, for lunch at the restaurant where Ming works so Ming took his lunch break at the same time. The three of us talked, ate, and laughed together and then, just as Ming was about to go back to work, he told us that on his way into town that morning, he had lost control of his little car on a big roundabout and it had spun full circle on the newly wet roads (it is autumn here so we’ve had some rain).

Ming said that a truck, and its driver, slowed down and witnessed his near-accident but luckily there was no other traffic as it was very early in the morning. Okay so BJ and I digested this information as we finished our meals then we went our separate ways.

At the time, I didn’t quite process that Ming had nearly been in another car accident/caused another car accident/come out of a potential car accident alive/not injured anyone in a car accident that was his fault … and that everything was okay … until I got into my own car to go to the nursing home. I began to perspire….

It was a cool day but by the time I got to the nursing home I was quite hot. I went to sit with Anthony for awhile before going on duty and, as his room is always so hot, because he feels the cold so badly, I thought my perspiration was due to that.

An hour later I was on duty in the dementia cottage and absolutely drenched in perspiration – every single strand of my hair was wet and the carer I was working with probably assumed it was menopause.

Anyway, I did my shift, sweatily and with no conscious thought of Ming’s near accident, then went home, still so drenched in perspiration that I had to put the air-conditioner on in the car even though the weather was cold. Just before I knocked off, Ming texted me saying, “home safe” and I wondered why he would do that because I had completely forgotten about his near-accident experience!

When I got home, Ming came out to meet me as he does and had all of the outside + garage lights on. I got out of the car and this was our conversation:

Me: Ming, I have had one of those sweat attacks – hyperhidrosis or whatever. Look at me – I am drenched!

Ming: Me too, Mum – me too! I was shaking and nearly crying when I got to work and sweating all day.

Me: Is that why you texted me you were home safe?

Ming: Yes! I thought you’d be worried.

Me: To be honest, Ming, I forgot about it.

Ming: So why are we both sweating?

I am quite interested in the fact that my mind didn’t absorb yet another close call in terms of Ming’s safety and yet my body absorbed it like a leaking sponge!

Will the car accident that Ming caused ever leave us? It has strengthened some relationships, weakened other relationships and probably mystified all of us in the ways in which it has affected us, individually – the nephews who went to the scene of the accident, for example; the mother who was overseas when it happened; the guilt we probably all feel for somehow allowing it – I don’t know anymore.

What I do know is that I am grateful, every single day since the accident, for the fact that every single person assaulted by that accident is still alive, still able to flourish, still able to overcome the obstacle of that terrible memory, still able to be.