jmgoyder

wings and things

“I love you” variations

I say this so often to Anthony that he has developed some rather cynical responses:

Me: I love you!
Anthony: Yes, I know.
Me: I LOVE youuuuuu!
Anthony: So you keep saying.
Me: Oh but I absolutely adoringly love you to the moon!
Anthony: Jules, shut up!
Me: But Ants, I love your big nose, your wide eyes, your weird ears!
Anthony: Your hair looks better.
Me: What?
Anthony: Stop fumbling.

I love him – I love our conversations, often full of mirth, irony, nonsense, joy, mystery and a strange sort of hope. Of course it wasn’t always like this; over the years it has been a very difficult transition from home to nursing home. Sometimes Anthony thinks he has just arrived so we have to go through the same initial conversation again.

What most amazes me is Anthony’s acceptance of what is. He has always been able to do this and is much better at going-with-the-flow than I am, and, incredibly, has never suffered depression. That illness seems to be mine alone and has been for some time and Ants sustains me with his incredible sense of humour.

Anthony: So why are you so down?

Me: What? Why do you think? You’re in a nursing home, Ming is down in the dumps, and I still haven’t produced that blockbuster novel.

Anthony: Don’t worry so much. I cleared the shed out and re-painted it and it looks wonderful.

Me: When did you do that?

Anthony: Yesterday.

Me: Well no wonder you’re exhausted!

Anthony: Jules?

Me: What now?

Anthony: I love you too.

 

 

 

 

 

 

 

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Forgetfulness is not necessarily a bad thing

After not being able to visit Ants for nearly two weeks (due to asthma), I was elated to find him unfazed.

Me: I’ve been so sick.

Anthony: I know.

Me: A bit of sympathy would be nice.

Anthony: Your mother ….

Me: Yes, she’s been visiting you on my behalf.

Anthony: She’s not you.

Me: And Ming’s seen you too so stop making me feel guilty. I mean, okay, here we go, let’s test your memory. When did you last see me?

Anthony: The day before yesterday.

Me: Yes!

Anthony: It was too long, Jules.

Me: I miss you too, Ants.

Okay so my point here is that 14 days were compressed into two days for Anthony due to the dementia factor. This helped to assuage my guilt of course because it was a great comfort to know that Ants thought he’d seen me ‘the day before yesterday’.

Ming and Meg are my greatest assets – my son and my mother. This is, for me, ground-level grief and these two people alleviate it.

One day Anthony will ask me where Julie is.

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WordPress problems

Grrrr. I am having WordPress problems just when I finally got my writing voice back ha! In the meantime, I will rely on Facebook.

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Back to the birds!

I was going to write something poignant, but I am too fascinated by why these two pigeoney-dovey-looking birds keep rejecting my offerings. For ages they have been visiting two fence posts just outside my front window. So I left crumbs (which a clever crow immediately took), then I put nuts out on the top of those two particular fence posts.

During the night it rained so I guess the nuts are now a bit soggy. The two pigeon-dovey-looking birds seem almost to be afraid of my strange offering. I will have to be more subtle and I am not gifted with subtlety ha!

It is such a great relief to let go of the poignancy, to charge my camera’s battery again, to watch the birds from my front window – the most beautiful view – or just to sit on the front veranda watching the sky’s birds at near-dusk.

 

 

 

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Life and death questions

Even though my mother and Ming have been visiting Anthony for the last week of this rotten asthma attack, I have worried so much about Ants.

The asthma is gone now but the side-effects of a steroid burst can include severe digestive issues. Not fun.

Anyway, I just rang the nursing home and my favourite nurse picked up and, as soon as I heard her voice, I started to cry. She quickly calmed me and asked me to tell her what was what and she said she would be seeing Ants in just a few minutes and would explain the reason for my absence.

I haven’t seen Ants for a week now and I don’t think we have been apart for this long ever, so it’s a difficult thing. On the other hand, perhaps we needed a rest from each other?

One friend recently suggested that Ants is only alive (having out-lived his prostate cancer + PD diagnoses) because of me. The implication of this is that my constant presence in his life is giving him the will to live?

No, he is not vegetative yet but it won’t be long. Ming and I are reluctantly ready but also absolutely terrified.

So surreal!

 

 

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Common sense!

A few weeks ago Ming and I were having one of our on-the-front-veranda- philosophical discussions. I think it was nearly dusk but the sunset was around the corner of the house so I could only see it at an angle. This kind of experience reminds me of when my mother used to take us outside at dusk to look at the stars when my brothers and I were little.

I don’t look up enough into the sky’s various renditions; instead, I watch the loop of my internet feed, the news, blogs, my own constantly-halting story about Anthony’s Parkinson’s disease. Sometimes I feel inept, indolent; sometimes I feel an almost volcanic eruption joy after just sitting with Anthony for hours, holding his hand, stroking his head – just being with him.

Anyway, during the philosophical discussion mentioned above, I cry-laughed the story of how hurt I was by various situations and people over the last few months. “But do any of these things/people matter to you anymore, Mum?” Ming asked.

And all of a sudden, I realised that I was unnecessarily worrying about stuff/people/situations that, despite being an intractable part of the past, simply didn’t matter to me anymore. It was a revelation!

As Ming’s wisdom permeated my rather dusty psyche, I felt an enormous sense of relief and gratitude for the things/people and situations that DO matter to me.

Okay this is my last sentimental post about Ming for the time being, but he really is the most amazing person. Today this was our conversation:

Me: You are the best person I have ever met, Ming.

Ming: You didn’t meet me, Mum, you created me!

It’s nearing dusk and I am going outside to look at the sky.

 

 

 

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Sleep-Talking

This afternoon I arrived at the nursing home to find Anthony in one of his unwakeable slumbers. I had brought two very ripe bananas but I couldn’t wake him enough to eat them. I whispered in his ear that I would be back soon. He nodded in his sleep.

 

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Who am I?

No matter how prepared for it you are, it still comes as a shock when a person you love stops recognising you.

When Ming dropped in to see Anthony on his way home the other day (it was early evening), Ants didn’t know who he was but guessed that it might be S, his youngest nephew.

I told Ming not to take it personally and that lately Anthony sometimes disassociates me from Julie and will ask me where she is. This lack of recognition doesn’t hurt at all because I have been half expecting it anyway and it is very easy to convince Anthony that I am Julie. But of course Ming was, understandably, hurt and perturbed.

In this final phase of Parkinson’s disease dementia, Anthony is experiencing paranoia, delusions, hallucinations and extreme confusion. Now that he has so much trouble speaking (physiologically and cognitively), I am getting better at listening to his whispered fears.

Anthony: Watch out for those boys.

Me: They aren’t boys – they are the nurses looking after you, Ants!

Anthony: Are you sure?

Me: Yes!

Yesterday it was me, my mother, Ming, and multiple staff, popping in and out of his room, enabling his grin but, after individuals left, Anthony would ask, “Who was that?” – even about people he has seen daily for years.

It is quite possible that one day I will go in to see my husband and he won’t recognise me, but I have decided not to worry about that day. He is still in good physical health (well for an 80-year-old!)

And even if he doesn’t recognise us as us, he will still want Ming’s boisterous hugs, my double-handed hand holding, my mother’s silent knitting, and the banter of the staff at the nursing home.

Who am I?

I am the person who reassures Anthony that the farm is going well, that the money situation is fine, that the cows are being milked by an amazing team, that there is plenty of kerosene for the Aga, that his mother is fine, that I will buy a mango for tomorrow….

 

 

 

 

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Ten more minutes

Tonight, I went to see Ants later than usual because I had a party to go to later that evening. I arrived at 6pm to find him in bed, propped up comfortably and watching television. I pulled my chair close to the padded rail on the left-hand side of his bed, muted the television, kissed him and grabbed his hand.

He was very blank to begin with and, because he hardly blinks, his eyes were wide and a bit  confused. Our conversation wasn’t particularly animated because his voice was a whisper

Me: You look like a stunned mullet!

Anthony: You are ….

Me: Are you tired?

Anthony: Yes.

Me: Well I am going to a party soon but you can stay put. Is that okay?

Anthony: Yes.

Me: It’s L’s party; she’s graduated and now has her PhD. You remember L?

Anthony: I think so.

Me: May I change the station to the food channel?

He didn’t respond so I did so anyway and we watched a chef put together a delicious meal.

Me: This is making me hungry, Ants.

Anthony: Is there any chocolate?

Me: Yes!

One of our closest friends, M, provided a massive amount for Christmas and he has only gotten through half of it. So, one by one, I popped a few treats into his mouth because his hands weren’t working. (Around a year ago Anthony seemed to partially forget how to feed himself so, if I were there at mealtimes, I would feed him. We would joke about this and I would exclaim, “Feed yourself for goodness sake!” and he would say, “It’s more sexy when you do it.” I would laugh and laugh and he would smile.

Anthony has now become one of those residents who often (mostly?) has to be fed. But that’s okay because at least he still has an appetite and can still swallow adequately enough that his food doesn’t have to be mushed.

My plan was to leave the nursing home at 7pm, drop in to see my friend, N, on the way to L’s. I told Anthony this a few times as I was saying goodbye to him, then N rang to say she was running a bit late.

Me: Ants, I can stay another 10 minutes.

Anthony:  I am enjoying myself.

Me: Can you enjoy yourself when I’m not here?

Anthony: Yes.

My heart relaxed and I put my hand into his again and squeezed it and he took my hand up to his mouth and kissed it.

Ten minutes later, as I got up to go, he looked at me, his eyes wide, but no longer blank. I looked back, kissed him goodbye, and told him I would see him tomorrow.

Anthony: Ten more minutes?

Me: Yeah we’ve already had those. I love you so much, Ants!

Anthony: I love you too, Jules.

I have been so terribly sad lately that blogging seemed too hard, and responding to others’s blogs even harder, but I think I might have my writing voice back now. I hope so because I really want to write about this experience with Anthony, and Ming too; I really want to re-experience and express how beautiful ten minutes can be.

 

 

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Candy

Yesterday I wrote a post which I later edited because my grief sometimes interrupts my sense/ sentence structure. And I get worried that I might unwittingly upset someone good in Anthony’s family.

Candy is one of Anthony’s many nieces; she is also his god-daughter and Ming’s god-mother. But she and her husband live a long way away, up north on a station that suffers frequent droughts.

Her brother (the nephew who visits Ants every weekend), often brings Candy’s letters to read to him. I keep these in Anthony’s top drawer and often re-read them to him, which always makes his day!

Maybe this is an idea that could work? Maybe friends and relatives could email me these letters and I could read to Anthony?

Every time I read a Candy paragraph, he smiles. Thank you, Candy.

 

 

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