jmgoyder

wings and things

Dementia dialogues

I was writing these snippets on Facebook but, now that I’m having a break from Facebook (because I keep getting confused about what I have written where!) I’m just writing them here.

As I was trying to reposition Ants in his armchair the other day, this was our conversation:

Anthony: You’re such a great big thing aren’t you.

Me: What? How dare you!

Anthony: Well you are!

Me: That’s only because you’ve become a tiny little dandelion!

Anthony: Yes, but I have power.

Me: Oh you do, do you?

Anthony: You still love me.

Well, he does have a valid point!

 

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Shenanigans

I remember the day, decades ago, when I discovered an enormous spider in the kitchen of Anthony’s house. Anthony was milking the cows and his mother, who we all called ‘Gar’, was having her afternoon nap, and I was trying to get the lumps out the white sauce I was trying to make on the Aga, to mix with the tinned salmon. I was nineteen and, even though I’d lived in Papua New Guinea for three years and I wasn’t afraid of spiders, I thought it best if I killed this particular giant.

So I found the fly spray and used almost the whole can to crumple the spider onto the kitchen floor. It died simultaneously with the white sauce which I only just rescued the Aga from (another story).

When Anthony came in from milking, I told him about my heroics proudly. He was aghast.

Anthony: You killed Martha?

Me: What do you mean?

Anthony: Martha is our pet spider, Jules.

Me: Oh no, I’m so sorry.

Anthony: Mum will be devastated.

Me: But you didn’t tell me you had a pet spider. Why didn’t you tell me?

Anthony: Where is she?

Me: Your mum? She’s resting.

Anthony: No – where is Martha?

Me: I’m so sorry but I put her into the outside rubbish bin. (I begin to cry).

Anthony: Jules – I am kidding!

Okay, so over 35 years later, I am sitting next to Anthony in the nursing home and he is boringly slumbery, so I put my face up close – nose to nose – and shout “Wake up!” His eyes open but he doesn’t focus. I keep my face close to his and all of a sudden he launches up in his armchair with an unexpectedly loud “BOO!”and nearly head-butts me.

Me: You scared the hell out of me, Ants!

Anthony: That was the desired effect, my dear.

 

 

 

 

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Elton John

Elton John made a guest appearance on one of those daytime shows  yesterday and so I put the volume of Anthony’s television up. As soon as Elton starting performing, Anthony began to wave his arms and tap his knees.

Me: You should be a conductor!

Anthony: Yes, I’ve been told that before.

I love these moments of hilarity!

 

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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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Moments

Today, as I fed Anthony his lunch, he took my hot hand into his cold hand, and kissed it over and over again until I laughed hysterically.

Anthony: Shhhhh! You are so loud!
Me: I was always softly spoken until I met you!
Anthony: Shhhhh!
Me: Are you ready for your next mouthful? OMG you are like a starving dog!
Anthony: I’m hungry.

Anyway, after I fed him his lunch (he seems to have forgotten how to use cutlery – normal in cases of PDD) I got my mother’s amazing Christmas cake out of the cupboard and he pretty much vacuumed it all up!

Lately I have become a bit haphazard with visiting Ants. For example, when he is in sleep-mode, I don’t stay very long; but if he is in wide-awake mode, I stay. It’s a kind of loose arrangement whereby I try to spend at least a few hours per day with him. I should probably turn this into a more regular, regulated routine, but, since I stopped working at the university (and that is a few years ago now), I have lost any sense of daily routine. I suppose I have just been kind of going with the unpredictable flow of Anthony’s PDD.

When I take a day off from seeing Ants, I simply summon Ming or Meg to do so.

Almost every time I enter Anthony’s room, he looks at me and says: “How did you find me?”

Almost every time I leave Anthony’s room, he asks: “You won’t forget where I am?”

This afternoon, he whispered something a bit more poignant: “Jules, don’t forget about me” and I reassured him, of course!

His verbal antics aren’t so acrobatic anymore; his sarcasm is subdued, but the way Anthony stares at photos of Ming and me and him – especially the ones in which Ants is still healthy, I am young, and Ming is a little child – are particularly moving.

Now that Ming has converted a couple of videos into dvds (of wedding and baby Ming), I can see clearly how this nearly 40-year-old relationship has impacted on all of us in various ways.

And this is probably the moment in which I begin to cry (unless I find a good movie).

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Anthony’s hilarious sarcasm!

Yesterday, when my mother visited us at the nursing home, she asked me how one of her friends was; her friend is in the dementia cottage where I worked for awhile last year. So I said, “Let’s go and visit her!” So we did. I love going there to see the wonderful women (residents and staff).

I told Ants we’d be back soon as the dementia cottage is just around the corner from where he is – in the high care section.

ME: Ants, we’re just going to visit some of the neighbours.
ANTHONY: What about me?
ME: I’ll be back really soon, okay. You stay here.
ANTHONY: I suppose I’ll see you in two or three weeks then.

He has a gift for sarcasm – always has!

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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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Once upon a time 4

The young woman was employed as a ‘nanny’ to two angelic-looking monsters, aged 2 and 3. She had thought her London job would be somehow exotic but, instead, she found herself dealing with a young, professional couple of parents who, despite having produced two children, didn’t have a clue what to do with them. The mother’s passionate advice to the nanny was “Don’t ever use the word ‘no’. I don’t want them to know about ‘no'”. The father, on coming home from work to find his two boys climbing the ceilings with an abundance of no ‘no’ energy, would weep freely into the reluctant shoulder of the nanny.

You would think, wouldn’t you, that this situation would distract the young woman from her love for the dairy farmer. Instead, it had the opposite affect and she became intensely homesick for Australia, for her mother and brothers, for the dairy farmer (of course!) and for the dairy farmer’s brother’s family.

That Christmas, the dairy farmer’s tall, shy sister-in-law decided to leave a cassette tape recorder on so that the young woman/nanny could share, in retrospect, the buzz of that day. When the young woman/nanny received this tape recording she was in the midst of preventing and/or throwing the angelic looking monsters out of her attic window. But when she pressed ‘play’ it all changed, as she and her two charges listened intently to the voices of gleeful children opening presents, messages from each of the white-haired children, the kindness in the tall, shy woman’s voice, the gruff affection in her husband’s. And then there was his voice – just four words: “Hi Jules, happy Christmas!”

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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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Dilemma delights

The other day, one of Anthony’s nephews and his wife visited us at the nursing home. We figured out that we probably hadn’t seen each other since Ants’ 75th. My mother also happened to be there, and Ming arrived soon after because he wanted to re-meet one of his many cousins.

As soon as this nephew entered the room, he sat right next to Anthony, shook his hand, made eye contact, and exclaimed, “Uncle Ants!” then reminisced about when they had been children. He talked directly TO Anthony and, even though Ants wasn’t very vocal, he was responsive and he easily recognised this lovely couple.

It was a wonderful hour or two and, as I was walking the nephew and his wife out to their car, she admitted to me that she’d been a bit nervous, had wanted to remember Anthony as he was, but now felt reassured about how he IS.

The next day, I reminded Anthony of this visit, and his three-syllable, whispered response was “DELIGHTFUL”.

Okay, so that should be the punchline, but it isn’t. What I have learned from this visit, and from the frequent visits of other relatives and friends, is that speaking TO Anthony, no matter how unresponsive he seems, is vital.

It is unavoidable, of course, that, in a situation like this, we will also speak ABOUT him in front of him and I always find this TO-versus-ABOUT very difficult. It feels a bit disloyal to me; that weird scenario between being with the person who is being spoken to versus the scenario in which the person is being spoken about.

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