jmgoyder

wings and things

‘Thunking’

IMG_4655Thinking versus thunking (I like thunking!)

3.10am: There is something quite exciting about hopping out of bed at 3am, wide awake, dashing to my writing room and switching on the computer and, aha, engaging with various friends. It seems somehow illicit to be up and about, drinking coffee while the sky is still black night, listening to absolute silence, reading thousands of words, smiling at photos on my screen ….

4.03am: Me chuckling that it is now just after 4am and nobody is going to tell me to go to bed.

4.38am: Ming’s favourite phrase is “Do what you want to do!” This type of 21-year-old wisdom sustains and motivates me whenever I am stuck. I feel grateful for this wonderful son of ours who, having recovered from two spinal surgeries, his father’s transition from home to nursing home, the car accident that injured so many and was his fault ….

For all of the above reasons I prefer to thunk rather than think because too much thinking can do your head in whereas thunking allows you to step aside. It might be just a tiny step (an ‘i’ to a ‘u’) but it makes a hell of a difference!

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Nursing home friendships

One of the most beautiful things about being with Anthony in the afternoons – in his nursing home room – is the easy friendships with various staff.

These various staff have various roles, of course: domestic duties, carer duties, medication duties, managerial duties, catering/cooking duties, OT duties, volunteer duties, supervisory/teaching duties, orientation duties, and many, many more. When any staff member (regardless of role) drops in – I always either ‘pause’ or ‘mute’ the TV. This creates a little bit of silence, just enough to enable an interaction that will make Anthony smile. This is because he was always gregarious, and loud, and the life of the party, and nobody will ever know this unless I tell them. Many of the staff now understand how a bit of banter with Anthony can rekindle a semblance of the BIG personality out of the tinyness of who he is now (quiet and thin). They haven’t just discovered this via me, they have also discovered it via him.

There are certain staff that can, in a few seconds, rustle him out his silence, conjure the smile, make him feel valued, but of course they are always rushed, doing their own jobs and not wanting to appear to be wasting time. Recently, due to the rush of work, two of the carers opted to come and visit Anthony on their days off so they could spend more time with him – I was astounded by their generosity, and so grateful!

But, even during work hours, those quick visits are invaluable and, whenever I am there too, staff will often drop in and have a chat with us. I think this is wonderful! Whenever any of the staff drop in to simply say hello to Anthony and me – to chat, gossip, joke, hug – I can come home with the knowledge that he is well cared for and, more importantly in a way, cared about.

Here’s an idea: what if every single staff member were allocated half an hour per day to spend a bit more time with a resident? This could be used in five-minute increments so that staff could linger a bit in various residents’ rooms just for a chat, instead of having to rush off to their various duties. One of the chefs at the nursing home dropped in to Anthony’s room the other day to admire the artificial roses that she thought were real.

Me: Haven’t you noticed these before?
Chef: Yes, but I never have time! They look so real!

We had a hurried conversation and she zipped off back to the kitchen. I wanted to give her a massive hug but I restrained myself as I seem to have become overly-huggy lately. A bit later in the afternoon:

Anthony: Your roses are a hit.
Me: Yes! Anthony: But I planted them. Give that lady a cutting. Me: Yes.

I wish that I could name the various staff who have become friends of ours, those people who, in the line of duty, don’t mind detouring in order to offer kindness and friendship. But I respect their privacy so all I can do here is to say thank you to them, every single one of them, because they will know who they are.

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Routine to the rescue

I’m not crazy about the idea of routine and now that I am once again a lady of leisure unemployed, there is even less incentive to exit the world of spontaneity and knuckle down.

In my recent interview with the finding-another-job people, I stated that I only wanted part-time work because I liked to spend the afternoons with Anthony in the nursing home. I also stated that I would be happy to do something completely different from my previous jobs (lecturer, nurse etc.) So it’s with a degree of mild excitement that I am now looking at outside-the-box possibilities. We shall see!

In the meantime, I have settled into a routine of being with Anthony from just before noon until about 4pm. This way, I can help him with his lunch; make sure he is warm enough; get him comfortable in his electrical armchair; give him chocolate, bananas and beer (but not all at the same time); and just be there, very close, one hand on his head and the other hand inside both of his.

This arrangement is great and our mutual friends and relatives now visit us at the nursing home. I am free to make visitors coffee or tea (our friend, C, visited this afternoon and it actually did feel like we were all home at the farm). I also have plenty of long-lasting snacks in Anthony’s cupboard, you know, like nuts and stuff, plus red wine, brandy, scotch and warm beer. The ready availability of this kind of sustenance also helps to make Anthony’s room homey and, I hope, welcoming.

If I am meeting friends for lunch, I simply go to see Anthony a bit later in the afternoon and then stay later in order to help him with his dinner. So I think the fact that I am now always there in the afternoon has become something he can now rely on; it gives both of us a definite daily expectation. It also frees my whole morning up so I can do other things like the exhilarating tasks of housework, washing and cooking for a fussy son ha!

Sometimes I feel incredibly lazy and unproductive sitting on the side of Anthony’s armchair with him, watching Dr Phil or a television series, or Master Chef. But, thanks to either the ‘pause’ or ‘mute’ buttons, I can always stop whatever show is on and we can converse with each other and/or visitors, AND the wonderful staff who are so affectionate and friendly to both of us

Today, Anthony was quite vocal and ‘with-it’ until about 3pm when he thought his mother’s eye-glasses were on the floor (yes, the hallucinations are getting worse but not distressing yet, like they used to be at home).

Anthony: You are popular, Jules.
Me: What do you mean?
Anthony: Everyone always wants to know when you will be here.
Me: No, it is YOU who is popular, Ants! The staff here love you!
Anthony: I don’t think so – I think it’s you.
Me: Rubbish, Ants!
Anthony: I beg to differ.

But a couple of hours after this lucid conversation, as I was about to leave to come home:

Me: I’m off now to do the grocery shopping, Ants, okay?
Anthony: Is everything in the shed?
Me: Of course!
Anthony: What about the calves?
Me: They’re fine; Ming is taking care of it – don’t worry.
Anthony: Don’t be too long, Jules.
Me: I’ll be back as soon as I can.

And, after one last kiss, hug, joke, lie, I come back home to this beautiful farm and begin to accept that this new routine is working.

Anthony’s face is no longer as expressionless as it was six months ago….

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He is smiling again!

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“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

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Home away from home

I wake up every morning, alone in this old, cold, quiet farm house, and smile into the memories of when it was full of warmth, people, noise. I know I should light the Aga, get the fireplace blazing, turn the radio on loud, make scrambled eggs, but Ming has already gone to work and I’m not hungry.

So I get showered and dressed fast, so I can go to the nursing home to be with Anthony for the day. His room has now become my home-away-from-home so much so that I want to be there more than I want to be here.

I like to get there at around 11am but sometimes it’s not until the early afternoon (depending on other various commitments). This daily reunion is fantastic:

Me: DAAAAAAARLING!
Anthony: How do you always know where to find me?
Me: I’m a genius!

Then, after a hug/kiss embrace, I proceed to tidy the room a bit, move his chair so I can put my chair beside his, turn the heater on (it should always be on but sometimes isn’t), put a blanket on his knees, have a chat, help him with lunch or afternoon tea.

Once settled, we watch whatever series I have on hand. House of Cards is our current choice and Ants loves the Britishness of this and I love the plot!

So, in this home-away-from home nursing home room, I put my feet up onto Anthony’s lap and we are together.

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These boots were made for walking ….

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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 http://dimario.com.au

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!

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Still Anthony

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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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.

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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.

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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.

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