jmgoyder

wings and things

Imagined conversation 22

These imagined conversations are my way of ploughing through the grief of losing my wonderful husband to pneumonia last year. I am not going mad and I am not delusional; I just miss talking to Anthony, so I decided to imagine the conversations we might have….

Me: It was our 25th wedding anniversary last month.

Anthony: I know, Jules, I know.

Me: I went to a grief workshop that night and told the others that it was our 25th wedding anniversary and J (remember J?) congratulated me/us.

Anthony: J? The fair-haired woman?

Me: Oh, sorry, Ants, I forgot that she only met you after you were dead. J is/was so kind and I am amazed that your funeral parlour hosts such wonderful workshops for people like me, who are struggling with their grief.

Anthony: Nothing like this was in my mind, Jules, when we got married. My only hesitation was due to the age gap; I didn’t know I was going to get sick and old at the same time.

Me: I didn’t know either, Ants. I was prepared for you getting old before me but I wasn’t prepared for all of your illnesses.

Anthony: Sorry, Jules.

Me: Not your fault, Ants. Somebody said to me the other day that it must be a relief that you died and I felt as if I had been punched. It was a well-meaning comment but it made me think about how much the fact that you had Dementia precluded people from visiting because they were scared.

Anthony: You think too much, Jules. Don’t worry about any of that because I’m fine now.

Me: I’m not.

Anthony: I miss you too, Jules.

Me: I want you back, Ants. I miss you so much that my brain is all foggy and unfocussed and I have never, ever felt so alone. I just want to talk to you!

Anthony: You are talking to me.

Me: So is that okay, if I keep talking to you?

Anthony: Of course!

Me: Yeah, but this is just me pretending to talk to you, Ants. I have to eventually get used to the reality that you are dead. I’m just as crazy about you now as I was when I was 18, but you’re gone!

Anthony: I’m not gone or we wouldn’t be having this conversation.

Me: So where are you?

Anthony: I don’t honestly know….

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Imagined conversation 20

Anthony: Who are all of these men you keep thinking about?

Me: Will you please STOP reading my mind like that; it’s so disconcerting!

Anthony: Well, who are they?

Me: If you can read my mind, surely you know who they are.

Anthony: But I want to hear it from you, Jules.

Me: Okay, they are just a bunch of CEOs, film executives, producers and….

Anthony: I don’t like it.

Me: What? I thought you’d be proud of me!

Anthony: [potent silence]

Me: Oh. My. God. Are you actually jealous? I can’t believe it. Yes, you are jealous, aren’t you!

Anthony: Well I am a bit, actually. I don’t want you to want them to like you; it doesn’t feel right.

Me: Ants, there is absolutely nothing romantic going on, I can assure you. It’s you I want them to like, not me!

Anthony: That’s good then.

Me: So are we clear now?

Anthony: Sorry, Jules. I just don’t want to lose you.

Me: You couldn’t lose me even if you wanted to, Ants.

Anthony: So what do all of those guys think of me?

Me: They think you are wonderful, Ants – absolutely wonderful! Star material!

Anthony: You are so full of BS Jules.

Me: I’m meeting one of them tonight for cocktails because….

Anthony: For God’s sake, Jules – don’t do anything stupid.

Me: Gotcha!

 

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Imagined conversation 15

Anthony: JULES! HI!

Me: Wow, you beat me to it – I was just figuring out how to say hi after so long.

Anthony: What kept you so long?

Me: Well, Mother and I went to Sydney for L’s wedding and on the way up to the airport my car starting playing up.

Anthony: Your car?

Me: Okay, our car. Anyway so we got to the airport to find that our midnight flight had been cancelled. Can you believe it?

Anthony: Well you do live on Earth, Jules….

Me: So I ended up queuing for over an hour to find out what was what and I left Mother on a seat with the luggage and … long story short we end up paying a fortune in a taxi ride to a motel at around 2am and then….

Anthony: I actually know all about it, Jules.

Me: What? That Mother was so sick you mean, and that she pretended not to be sick so we could still go to the wedding?

Anthony: Yep – I saw it all from on high.

Me: So you were hovering unhelpfully over Katoomba Hospital when we finally got her admitted? Thanks for the help NOT!

Anthony: You know me, I don’t like to interfere in these mother/daughter escapades.

Me: So where were you when we finally got back and she ended up in hospital again?

Anthony: Sorry, Jules, I was playing poker.

Me: Anyway she’s finally coming good and has been discharged with a pile of meds.

Anthony: I know.

Me: So if you already know all of this, what’s the point of telling you?

Anthony: I like the sound of your voice.

Me: I actually thought she might die, Ants!

Anthony: Death hasn’t done any harm to me. Tell her I’m as fit as a fiddle.

Me: I love you, Ants.

Anthony: I love you too, Jules. Keep up the good fight.

Me: What?

Anthony: It’s from a hymn I’m learning.

Me: Why are you learning a hymn?

Anthony: My deep baritone seems to have caught the attention of the choir woman. Jules?

Me: Yes, Ants.

Anthony: Tell your mother I said hello and to take it easy.

Me: Okay … thanks, Ants. Oh and about our car….

Anthony: Yes, good idea to book it in for a check-up.

Me: Are you always going to be one step ahead of me, Ants?

Anthony: ‘Fraid so, Jules.

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Getting wise to grief

I know that this is going to sound weird but grief is actually quite interesting.

I have been trying so hard to outwise/ outwit? the effect that this terrible grief is having on me. Okay, so the grief itself is a given and it’s understandable that I would be grieving for Anthony; that’s not pleasant, but it’s okay.

It’s how this grief translates into everyday life that is the real challenge. For example it is so tiring to be so tired of grieving, to be so tired of my own tiredness, tired of myself, tired of crying, tired of not being able to cry, tired of trying so hard not to be tired.

Grief is exhausting! I can just imagine telling Anthony about this and it makes me laugh because he would have rolled his eyes and sighed at my ridiculousness in trying to figure grief out. He wouldn’t have offered clichés like ‘move on’ or ‘you need to get out and about more’ and I don’t even think he would have said, ‘I wouldn’t want you to be so sad, Jules’. Instead, he would have said ‘do what you want, Jules’ and I know for sure that he would be secretly chuffed that I miss him so much. His heavenly ego will be getting a rush.

Anthony adored me. Even though it took him over a decade to realise it, he made up for lost time very quickly and I think I am one of the luckiest people in the world to have had such a fantastic marriage. I wasn’t this long-suffering carer of a sick husband (which is probably the perception – you know, the dutiful wife); I was cared for by him. Every time I saw him in the nursing home, the joy in his face was the joy I took home with me, no matter how poignant.

Grief is often seen as the loss of someone you love and of course this is true but isn’t it also true that you miss being loved? I do. It’s not that I want to be adored per se (despite being a blogger – paradox alert); I just want Anthony’s adoration.

And, like a kid outside a closed candy shop, that’s my face pressed against the reflection of the impossible.

Grief is interesting. And so is getting wise to it.

 

 

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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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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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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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2. “Where is Mum?”

Anthony asks this question at least once a week and, because it distresses him, I have to be really careful with my answers. If I say she is fine and at home on the farm, he worries that she is alone and I have to reassure him that Ming is there with her.

This wonderful woman, Anthony’s mother, fondly called ‘Gar’ by family and friends, died over two decades ago. I adored her, was frightened of her (she was a true matriarch), and I was with her when she died at the age of  86. Her last words to me were, Will you look after Anthony? And, buzzing with all of the feelings that come with first love, I said yes.

I was a teenager, just 18, and Anthony was 41. My adoration of him was embarrassingly obvious to both Gar and Anthony. Gar encouraged it in a rather mischievous way but Anthony spurned my clumsy adolescent love-sick self, out of respect for my youth. It would be many years before he and I graduated from platonic to romantic.

Finally, at the age of 56, this workaholic, dairy farmer, best friend, bachelor, proposed. By then, I had steeled myself to imagine life without Anthony, but I had this absolute certainty about our son-to-be. And I was right. But I didn’t know that then.

Anthony’s proposal of marriage was almost too late as I was beginning a tentative relationship with another man – a kinder, younger, more generous man.  I was in my early 30s by then and thought it best to finally move on and away from Anthony.

Then, whammo, Anthony just came to his senses. It was so sudden and such a shock to hear him crying on the phone and declaring love. I had never known him to express such emotion so I was flabbergasted and cynical. But I got over that and said yes to the marriage proposal.

Gar had always encouraged it, after all!

Anthony: Where is Mum?

Me: She’s in the kitchen, making breakfast, Ants.

 

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Happiness

In just over a week, Ming and I are off to Sydney to speak at a conference. Check out the link!

http://www.happinessanditscauses.com.au/

The title of our talk is – yes, you guessed it – “Dementia Dialogues”. I am hoping to convince the audience that it is still sometimes possible to derive, and give, great joy within the context of Dementia. Ming and I are simply going to cite a few examples of the funny and poignant conversations we share with Anthony. We only have a 15-minute slot, so our talk has to be succinct, a bit like a TED talk I guess.

I emphasised the word “sometimes” above because I am well aware that our own experience of Anthony’s Dementia is not necessarily like other people’s and I recognise how lucky we are to have a husband/father who is so resilient. The other day, when I got to the nursing home earlier than usual, and was able to feed Anthony his breakfast in bed, I asked him if he was comfortable and he whispered a booming “EXTREMELY!”

Anthony’s sanguine nature is a wonderful ‘plus’ when it comes to Dementia but every single person who has Dementia is just as individual as those of us without Dementia. Now that I am involved in support groups for carers, I have heard a fair few horror stories and I do remember our own horror story before Anthony’s admission to the nursing home. So I guess another point I want to emphasise in our conference talk is that the idea of placing a loved one in a nursing home needn’t be a tragedy.

I haven’t blogged for so long that now I’m rambling – ha! It’s good to get the words out. Now I just have to prepare for the conference – yikes!

 

 

 

 

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The dream

I have various versions of the same dream about once a week. It’s always some sort of party, or wedding, or get-together but the venues change from dream to dream. The ‘characters’ in these dreams usually include old friends, close relatives and always Ming, but he is often either a baby or child.

In each of these weekly dreams, Anthony is extremely incapacitated and in a wheelchair; the destination is hours away from the safety of the nursing home; and it’s only when we get there that I realise I have forgotten his medications for Parkinson’s Disease (the timing of which is vital).

So, in each of the dreams, I am either searching my handbag for a stray pill, or trying to decide whether to drive all the way back to the nursing home. I am totally panicked and trying to figure out who can help me get Anthony from his wheelchair out to the car, but people are milling around him, happy to see him but concerned about him being in a wheelchair etc.

Because this is a dream I am, of course, leaping tall buildings and smashing windows and unlocking safes in my frantic search for Anthony’s pills – all to no avail. So I get back to the party, or whatever it is, and am relieved to see that Ants isn’t slumped too badly in his wheelchair. I rush to him and kneel, apologising for forgetting his medications and all of a sudden he gets up and is fine – robust, loud, laughing and hugging me as if the whole thing was some sort of bizarre practical joke. The relief that washes over me in the dream is so wonderful that it wakes me up.

So, when I wake up, it takes me about a minute to get my bearings and realise it was a dream but it never makes me sad. Instead, this recurring dream gives me enormous joy because it reminds me in so many ways how fantastic our life together has been.

I hope I get that dream again tonight.

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