jmgoyder

wings and things

Our TEDx talk

Here is the link to the talk Ming and I gave the other day at Bunbury’s TEDx event.

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Doing it

I bumped into some relatives today at our local, rural, shop and they said they had intended to go and see Anthony today, but it was too late in the day. It was raining relentlessly so I admitted that I, too, hadn’t gone into town to see Anthony but that Ming was doing it.

Doing it?

Why did I describe my visits to Anthony as a job that needed to be done? Why didn’t I say, “Ming is visiting Ants today”? instead of “Ming is doing it today.”

I am so embarrassed that I expressed myself this way because for all of these years I have felt and believed that the romantic love I share with Anthony would somehow sustain us. In fact, as Ming often points out, Anthony is now mostly lost in his world of Parkinson’s Disease Dementia. Yesterday, for example, Anthony was mostly asleep during my 2-hour visit and this is often the case.

Perhaps love is not simply a feeling but also a decision. For me, this realisation has made all the difference recently because in deciding to love someone, that ‘do it’ decision, is an absolute in the face of multiple contingencies.

Do it.

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Doubts

Ming and I did our TEDx talk at the Bunbury Entertainment Centre a couple of days ago, and I think it went well. Ming and I have discovered that we can do this kind of presentation by bouncing off each other. This is our fifth joint presentation via radio or podcast; I think Anthony would be proud.

But I have so many doubts!

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9. “You seem like a very nice bloke.”

Ming visited Anthony yesterday and once again wasn’t recognised. I am so proud of the way Ming is handling this. Instead of feeling hurt and upset, Ming just goes with the flow and has fun with Anthony anyway.

Ming: Do you know who I am?

Anthony: Well, you seem like a very nice bloke.

Ming: Yes, Dad, but do you know WHO I AM?

Anthony: Aren’t you the hairdresser?

Ming: No – I’m your son – I’M MING, DAD!

Anthony: Yes, that’s right.

Ming has the same booming voice that Anthony used to have. He also has a similar gait and the other day as he suddenly appeared in my view through the front window, I thought for a split-second that it was Anthony. The nostalgia was unsettling, but also quite pleasant. He loves the stories I tell him about how Anthony used to be before and just after Ming was born. These stories have helped Ming to cope with Anthony’s ill health over the years, especially lately. Ming has very few childhood memories of having a father who was robust, gregarious, the loud, life-of-the-party, generous host because he was a one-year-old when Anthony suffered his first cancer – kidney cancer.

One of the most wonderful things for me is to see so many of Anthony’s qualities embodied in this larger-than-life son of ours. Ming is full of humour and a kind of boisterous grace. To hear him tell me about how fantastic his visit to Anthony was yesterday is like a gift.

Two very nice blokes.

 

 

 

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8. Carrot juice

Several years ago Anthony and I embarked on a carrot juice diet and we went through two juicers (warranteed and replaced) in our quest for better health. We did this for around two months until our skin took on a rather strange, yellowish hue and Anthony developed arthritic pain. At the time, I did a bit of research and discovered that an overabundance of carrots can actually be harmful so we gladly quit the carrot juice and laughed ourselves silly about what idiots we’d been.

Looking back to that time, I now think that perhaps Anthony was showing signs of the Parkinson’s Disease Dementia that has now pretty much paralysed him, physically and cognitively. I guess I was trying desperately to find a solution?

I am a great fan of cold-pressed juice but I also know that it takes a hell of a lot of carrots to make a single glass of this elixir and nobody in their right mind would ever eat that many carrots in a single day. Nowadays I make juice with the outer lettuce leaves most people throw away, a single carrot, an apple, and orange, and a bit of ginger. This quest for health has consumed me lately due to my recent battle with mycoplasma pneumonia; I need to be well again and it has taken so long to get better. The hospital doctor did actually include (in his written report) my suggestion that my illness might have something to do with grief but, in the end, that was dismissed, the evidence of the mycoplasma bacteria was found, and I was given mycoplasma-specific antibiotics.

Anyway, back to carrot juice; once I was out of hospital I decided to go on a health kick. I’d lost five kilos so fast that my arms were (and still are) wasted and (hilariously for Ming) still stick-like. The other day, I reminded Anthony of our carrot juice adventure and he smiled. He remembered!

Anthony: But it’s good now isn’t it?

Me: Yes.

Anthony: I prefer chocolate.

 

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4. Lost for words

My visits to Anthony are often very silent and this is fine. The other day, as he was half-asleep in his broda-chair (armchair on wheels), I felt such a surge of love for him that tears filled my eyes.

At one point his own eyes opened properly and he said, “Jules?”

Me: I’m here, Ants. I love you so much!

Anthony: Yes I know.

Me: Actually, you’re supposed to say it back.

Anthony: Yes, I know.

Me: SO SAY IT!

He gave me his half-smile and said, “I love you Jules,” then drifted back to sleep.

Later on, when he woke again:

Me: Do you want me to stop saying ‘I love you’ all the time?

Anthony: Just for awhile.

Me: You want to sleep again. Am I that boring?

Anthony: No, you’re not boring.

Me: What am I then?

Anthony: Just slightly boring.

Me: How dare you!

Anthony: I didn’t mean it, Jules.

Me: So why are you looking at me so ferociously?

Anthony: DESIIIIIIIIRE.

Oh.

Any words I was about to speak were lost within my laughter.

Anthony’s half smile broadened to the best of its ability. The muscles in his face have been so affected by Parkinson’s Disease that he often appears to be angry or unhappy, so a smile is like gold. So one of my main goals for each visit is to somehow get that smile happening. When I can’t, I feel a bit defeated and ask for reassurance that he is okay. His answer is almost always the same but often uttered with a that masked facial expression.

Me: Are you happy, Ants?

Anthony: Always happy.

And once again I am lost for words at how accepting of our circumstance this wonderful husband of mine is.

 

 

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3. Existence

One of the most poignant conversations I’ve ever had with Anthony was a few months ago. From time to time he comes out with the most profound observations and I scribble these into my notebook because I know that later – sometimes much later – I won’t believe that he really said that.

Me: Is it okay if I write a book about you, Ants?

Anthony: No.

Me: Why?

Anthony: Because I don’t exist.

Was this dreadful statement about not existing a wisecrack, a joke, sarcasm? Anthony always had the most incredible attitude to life, and still has! He has no idea that he has Dementia and, now that he is virtually bed-ridden, I just tell him it’s the Parkinson’s Disease that makes him so tired.

Way back when we weren’t even married, there was an enormous spider in the kitchen which I rather shriekingly killed with a can of mortein. Later on, Anthony came in from milking the cows and I told him about my adventure. He looked at me, grief-stricken. “That was my pet spider, Jules!”

I was devastated! How could this man possibly ever love me when I had killed his pet spider? How could I make amends? Could I find another spider that looked like the one I’d killed? Did pet shops sell spiders?

We had a rather subdued meal until finally, unable to contain his mirth, Anthony guffawed and admitted that he was just joking. I am yet to experience a ‘phew’ quite like that!

And what is the point of this chapter? Well, maybe – just maybe, Anthony is just fooling around with us. Maybe he doesn’t have Dementia after all. Maybe these recent years have been a strange nightmare.

Me: Is it okay with you if I write a book about that spider, Ants?

Anthony: Of course.

 

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1. Sixteen Kilometres

I have been wanting to write a book about our experience of Dementia for some time so this is a chapter draft. I am numbering them so I can keep track. Any feedback appreciated.

SIXTEEN KILOMETRES

When Anthony says he has run sixteen kilometres, fixed all of the fences around the farm, and found the rogue mouse, do I correct him? Of course not!
Yes, Anthony used to love running around the paddocks (for the sheer joy of running). He also used to love the fiddly aspects of fixing fences, and I vividly remember his hilarious determination to eliminate a mouse, using a fly swat, in the hallway of our house.
So, when Anthony talks about these things as if they have just happened, I go with the flow by acknowledging these accomplishments, hallucinations and memories. I only ever contradict Anthony, if what he is seeing, or sensing, is distressing to him (more about this later).
Anthony: There he is in the corner, Jules.
Me: Who?
Anthony: The baby.
Me: You mean Ming?
Anthony: That furry one there [pointing to the corner of the room where is nothing]
Me: So is it a dog or a child?
Anthony: A bit of both.
Anthony sometimes forgets that Ming (our 23-year-old son) is all grown up, so he often ‘sees’ Ming as a baby or toddler. This hallucinatory thing mostly happens when I am visiting by myself. When Ming visits by himself, Anthony often misrecognises Ming as a cousin, uncle, even a deceased relative. I had already prepared Ming for the inevitability of Anthony not recognising us so, when it happens to Ming, it’s okay.
To some people, the idea of not being recognised by a spouse or parent or friend is the last straw. It’s quite common for relatives and friends to stop visiting a loved one, because they aren’t recognised. So what! As long as you recognise him or her, then surely that’s what counts. People with Dementia don’t intentionally hurt the people they used to know so well; they don’t intentionally misrecognise.
Anthony: Where’s Julie?
Me: I am Julie.
Anthony: Oh, that’s right.
Maybe it’s the constancy of my visits, maybe it’s because, despite Anthony’s Dementia, he and I still adore each other, maybe it’s just luck, but Anthony almost always knows who I am. I am so glad that I’ve been transcribing our dialogues for so long because, even though these conversations are mostly short and sweet, they are like gold to me.
Not long ago, I entered his nursing home room after days of not being able to visit because I was sick. It was the best welcome I have ever received (from anyone):
Anthony: Wonderful, wonderful, wonderful. Beautiful, beautiful, beautiful. I was just trying to conjure you.
Me: Oh, Ants – I’ve been so sick!
Anthony: Yes, I know. The kids told me.
Me: Are you okay?
Anthony: I’ve been running.
Me: Again? No wonder you look so tired! How far did you run this time?
Anthony: Sixteen kilometres.

 

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Making mistakes

This afternoon, my first niece, Ashtyn, came to visit us in the nursing home. I was holding Anthony’s hand and chatting about the Sydney conference to Ash, unaware that sleepy-looking Anthony was listening intently, especially when I lowered my voice.

You see, I obviously don’t want Ants to know Ming and I are going to be away for a few days because I don’t want him to feel abandoned, so I wasn’t going to tell him. And I didn’t anticipate that he would pick up on my conversation with Ashtyn in any accurate way because just before she arrived he’d asked me to clear away the mess of non-existent champagne glasses on the window ledge.

But, as soon as Ashtyn left, Anthony said, “So why didn’t you tell me you were going to Sydney?”

Sprung! I fumbled around with reasons and excuses and reassurances that it wouldn’t be for ages, all the little lies tucked inside my throat like baby mosquitoes, and it took ages to convince him that I wasn’t leaving him.

Oh well, I have three days before we go, so I will spend as much time as possible with Ants at the nursing home. It was a mistake to talk so openly in front of him about my own plans and I accidentally made him feel excluded – argh.

Another lesson learned.

The thing that saved the situation was when I remarked on how beautiful Ashtyn looked (pregnant with second child) and he said, “She knows how to do it.”

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Dementia Dilemmas

Okay, so in just a few days, Ming and I will be talking about how we have dealt with Anthony’s Dementia, including the nursing home decision. I have prepared a talk that mostly deals with the positives of our experience. It is, after all, a conference about happiness.

The trouble is that our own experience is possibly unique and may not resemble other people’s experiences of Dementia. So I am probably going to have to be very careful not to generalise, to pay respect to those carers who are dealing with personality changes, behavioural difficulties, and the horribleness of a loved one not recognising another loved one.

It is nearly six years since we finally (mutually) made the nursing home decision and, yes, the first year was a blank of heartbreak. But, since that horrible first year, I have made the nursing home my home too.

Today:

Me: Ants, I so love your big nose!

Anthony: You just want to see me naked, Jules!

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