jmgoyder

wings and things

Extraordinary!

Ever since I described Anthony as being in “good physical health” on my blog, which seems an hilariously ironic way of describing someone who has just turned 80, is living in a nursing home, with more diseases than I can count on one hand, Anthony has been remarkably fit!

It has been an extraordinary few days with Anthony walking (with his walker of course, and accompanied by carers), and talking with a bit more gusto, and smiling widely with the various staff who come and go from his room.

Today, my mother visited us in his room and it was such a delightful day. Even though Ants often refers to the mostly female staff as “those guys” he still gets a real buzz from the way many of these beautiful women flirt and banter with him.

Apparently Ants has been walking better and doing physiotherapy and occupational therapy better and he even demonstrated some arm exercises with the OT today in our room. It was hilarious and I am so grateful for these people who really do care about him!

Of course, he isn’t getting better. That would be, physiologically, impossible, but his extraordinary liveliness this week has been such a buzz. I know I’ve said this before, but Anthony is the most resilient person I have ever come across; he never complains even when I say no to his requests to come back to the farm (often his childhood farm, not this one). He accepts the status quo, accepts his health problems, accepts that when I leave to go grocery shopping and he says, “don’t be long, Jules”, I am not coming back until the next day. And this almost never comes back to bite me.

This afternoon, one of the OTs said Ants was, as always, invited to “Happy Hour” (a monthly event in the common room). His response was a perfect representation of how extraordinary and funny he is:

Anthony: Is that with all the old people?

Me: Yes, but it could be fun; we’ve done it before, remember?

Anthony: Do I have to?

Me: No, of course not!

Anthony: They’re all so old so no thanks.

And I am reminded again of the best gift Anthony gives me, not every day but often enough – laughter.

 

 

 

 

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“Ming the Merciless”

During Ming’s last year at high school, all of the kids were allowed to imprint on their grammar school jackets an emblem or phrase that represented who they were. Ming chose “Ming the Merciless”.

And that he is! This week, he mercilessly told me some home truths about how my sadness about Anthony affects him. This has been followed by many lengthy philosophical conversations about a whole lot of topics including life, death, love, loss, grief, acceptance. Occasionally he and I have cried together about our different heartbreaks, comforted each other by just listening, and made plans to get out of our individual ruts.

Ming is not merciless at all. He is the kindest person I have ever known and the way he cares so much about me, and Ants too, is extraordinary in its depth. I think back to all of those nights when Ming slept in the bed next to Anthony’s in order to give me a break from what we called ‘the night shifts’ and I am so grateful for his help, patience, love and comfort.

Now, at 22, this child/man of ours is, understandably, a bit tired of both Anthony and me, but he cares so much that he doesn’t ever want to leave the farm. He gets a lot of peer pressure to ‘get out there’ but he wants to stay put for the time being, work as a waiter, earn some money, and be here for both Ants and me.

And, no matter how many times I tell him that we don’t want him trapped into feeling he has to be here for us, he just reiterates that he loves this home, that he doesn’t want to go anywhere at the moment, that he is content.

Ming is so much like Anthony in this way; Ants knew how to go with the flow, work hard and he had no delusions; he was content with, and proud of, life as a dedicated dairy farmer despite the changes that wreaked havoc with the industry many year ago. I have always admired Anthony’s lackadaisical attitude to life and work and his acceptance of every single ‘whatever’. Ming has this capacity too but he is merciless against himself!

I am so proud of this amazing son of ours – Ming the Merciless!

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Communicating with Anthony

It is sometimes difficult for me to explain to family, friends and staff about how best to communicate with Anthony now that he has become so silent. So it was refreshing yesterday to have one of the carers tell me that she had learned how important it was to explain to Ants that they were taking him to the toilet or shower etc. and sometimes using the hoist.

“If we explain to him first, everything goes smoothly,” she said; “but if we don’t, he resists.” I told her how grateful I was for this understanding, remembering the times, a couple of years ago, when the use of the hoist terrified him – late night phone-calls from the nursing home in which I had to calm him down and reassure him that he wasn’t being captured by pirates and put into a torture chamber.

Thankfully, these kind of hallucinatory panic attacks were fairly short-lived and now that Ants is less ambulant, the hoist is used often to transfer him from one place to another. As far as I know, this no longer causes fear for him.

Verbally, Anthony is very slow to respond (both cognitively and vocally) so you need to sit close enough to touch him, or give him a ‘nosy’ (nose kiss), or yell nonsense, all of which Ming and I did this afternoon. And Anthony smiled many times, especially at Ming’s antics and asking, at one point, who the ‘bloke’ was.

Me: I am NOT  a bloke, Ants!

Anthony: Oh.

Me: It’s me – your wife!

Anthony: Yes, it is.

Okay so we are now into the fifth year of Anthony’s life in the nursing home and I am continually gobsmacked at how he continues to survive advanced prostate cancer, liver disease and PDD (Parkinson’s disease dementia). He is definitely way past his ‘used-by’ date but, as he isn’t in physical pain, I don’t worry as much; not only that – he is always positive, always accepting, always answering the ‘how-are-you?’ question with a whispered ‘fighting fit.’

 

 

 

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Gentle

The other day I felt the whiplash warning of a storm,

but it passed!

I had my armour on, I had my family protected; I was ready for the storm,

but it dissipated!

I sharpened my sentences with full-stops so that they wouldn’t ricochet back as semi-colons,

but nothing I wrote/said had the slightest effect on the storm-brewer.

I’ve become like a cartoon character of the lioness/mother bear who protects her family.

Overly sentimental posts about Anthony are simply an expression of ongoing grief, disbelief that he has lived so many years post prognoses. Ming has been absolutely amazing in every way.

Ming has a way of unravelling the bitter-and- twisted yarn into a coherent thought and, today, I thank him so much for reminding me to be gentle.

Gentle

 

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Bright eyes!

I feel compelled to record these updates on Anthony’s health, so that I will remember in the future. The unpredictability of his daily condition is just that – unpredictable. After days of silence and sleepiness, today his eyes were wide open (one of the many symptoms of PD is not blinking, so this makes his eyes very wide!)

Me: You look like an owl!
Anthony: I …
Me: Clear your throat – c’mon, cough!
Anthony: Coughing.
Me: So what did you want to say?
Anthony: Where is your mother?

Okay, so a little background information for those who don’t know. My mother is 81 and fighting fit despite numerous health challenges (cancer, broken hip, pelvis, wrist). She lives independently in a town not far from here and she is the epitome of maternal/grand-maternal etc.

The fact that she visits Ants so often – around twice each week and more if I need a break – is testament to her amazing love for me, her only daughter.

Today, she and I joked with Ants, and his eyes lit up several times, with mirth and affection and, of course, confusion.

Thanks, Mama!

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Bushfires

It’s a pretty bad and scary situation down here in the south west of Western Australia with one town destroyed by fire in around seven minutes yesterday.

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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.

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Whispers

Anthony’s voice has become so soft, he is hardly audible now. How did this happen so fast? One minute I am jotting down his brilliantly cryptic phrases, and the next he is unable to utter a single word.

Parkinson’s disease (in all its variations) has such a conglomeration of symptoms, the tremor symptom being just one, that it took years to figure out what the hell was wrong with Anthony. Understandably, perhaps, I just thought he was getting old really fast.

As Ming grew from baby to child to teenager, Anthony’s usually loud voice gradually lost its point, its force, its boom.

So, from now on, I will be listening to his whispers more intently than usual. He will have to check with me re the placement of every single comma!

The recent rumour that Ants was near death absolutely infuriated me!

Whispers….

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The truth

Recently, I wrote a post outlining some factual information about events following my marriage to Anthony. Almost immediately, I received a flurry of support from other family members, but this one stands out:

Dear Julie and Ming
I have been extremely interested by your comments about the past. You are on the right track, I believe. It is very important to remember incidences that have had a profound effect on you and your family. It is more important to recall the actual facts that have not been changed by glossing over the truth or to suit particular individuals. What you have recalled regarding J’s behaviour is fact. I can remember Anthony telling us.
I have discovered many interesting things about the Goyders and the Stewarts thanks to your box. Much of the information is quite contrary to what J. believed.
I am hoping to have it all together (within the next year) so that Ming, being the youngest of the generation will know some more about his family. It will all be factual too.
You continue to do what is best for Anthony and your patience with others who think they know better is amazing.

But then I received this:

What are you hoping to gain from ranting about … ??? You’ve only alienated yourself even more from our Family!!! I feel sorry for you Julie it obviously consumes you and makes you behave badly !!!

Of course this niece of Anthony’s is upset; and of course she doesn’t want to acknowledge that her father may have bullied Anthony into such a state of stress that he was gobbled up by one disease after another.

What should have been an idyllic first few years of marriage, with the ever-cute Ming, was tainted terribly by the extraordinary and (for me) unexpected malevolence of these relatives.

I had the most beautiful afternoon with Ants today. As I arrived, my wonderful mother left (she and I are his almost daily visitors). He was wide awake, bright-eyed, defying all odds, my hero. I told him about everything that had happened lately and I cried into his wonderful shoulder.

Me: Do you remember the ‘party’ the other day, Ants?
Ants: My birthday?
Me: No, it had a kind of death theme actually, but I didn’t realise it at the time.
Ants: Who is dying?
Me: You, apparently.
Ants: What rubbish. Look at this!

With that, he pointed proudly (as he often does) to his very flat stomach. Years ago he was a bit more rotund!

This is the thing, you see: Ants is on the other ‘side,’ so to speak, of the dementia of PDD. He has totally forgotten the ‘party’ of course; he often forgets his age, or where he is, or what is wrong with him. But he remembers the familiar very well and the constancy of my almost-daily presence, Ming’s, his nephews’ visits, my mother’s frequent knitting visits; the letters from his god-daughter (also niece); visits from my friends who love me almost as much as they love him; the carers and other staff at the nursing home.

This is the truth.

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Death-defying

Anthony has lived, breathed and survived so many diseases now that it is gobsmacking that he is still alive and (almost) pain-free. He is like some sort of super-hero in the ‘high care’ section of the nursing home, and very popular with the staff because, after nearly four years there, he still has a twinkle in his eye.

Of course, sometimes he seems semi-comatose; other times, he is alert. It’s the same with verbal cognition: sometimes he is unable even to say a single word; other times he is vociferous. I haven’t seen him walk for awhile, but maybe he does that in the morning and I usually get there at lunch-time or in the afternoon.

Most of Anthony’s regular visitors – me, my fantastic mother, Ming, friends, family, and volunteers – actually speak to him, reminisce with him and this is wonderful. And the staff are fantastically interactive with him to the point of flirtatiousness. Be careful, girls – he is mine!

The rumour, spread by a family member, that Ants was near death, was disturbing to say the least, but, once I rang him, he admitted his mistake. It didn’t seem to occur to him that his rumour might have upset Ming and me.

This morning, I received a phone-call from a neighbour who hadn’t seen Ants for awhile and he was shocked at Anthony’s confusion and appearance. I reassured him that Ants was always a bit dishevelled in the morning. Later on today, my mother rang me to say she was with Ants and she gave me her phone so I could speak to him.

Anthony: Where are you?
Me: Ming and I are fixing a fence.
Anthony: At Bythorne?
Me: Yes.

Please don’t die, Ants. Not yet.

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