jmgoyder

wings and things

To resuscitate or not to resuscitate?

This afternoon Anthony and I had a case conference with one of the registered nurses (RN) at the nursing home. This kind of interview is done from time to time (I think it’s annually) so that residents and/or relatives can provide feedback about everything from the quality of meals to the aesthetics of the room to the drug regime etc.

Obviously the quality of care is paramount so I just pointed out that if the television is on, Ants can’t focus on the job of walking to the shower despite two helpers, because the noise of the TV confuses his senses. I also wanted it noted that he hallucinates; that he asks me for panadol regularly but, due to his verbal difficulties now, and dementia, and that farmer stoicism, would never ask for pain relief from anybody except me.

Anthony didn’t really understand what was going on but the RN and I continued to try to include him. I was sitting on the left arm of his armchair and the RN was facing us. She wrote everything down and conversed with us as a couple as much as she could but when it came to hospitalisation I said no.

The last question on the case conference form was palliative. I think this is now a standard question and I think I have been asked this same question on numerous occasions over the nearly four years that Anthony has been in the nursing home. I still haven’t provided an answer.

But today, when that question was asked, I cried a little bit, quite openly, and the beautiful RN, cried a little bit too when Anthony said:

“You’re crying because you’re under more undue stress than usual.”

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The magic of make-believe

One of the most wonderful aspects of being a small child is the magic of ‘make-believe’ – the power of the young imagination to create anything out of anything and to see the world through the lens of magic.

The first time I climbed high up into a tree as a child, the first time Ming saw fog (he was 4), were moments of intense magic – make-believe moments

Anthony is 23 years older than I am so I have no way of knowing what his childhood make-believe moments were. But, as his Parkinson’s disease dementia progresses, I am becoming more amenable to his visual, auditory and tactile hallucinations. For example, he often sees dogs or calves in his nursing home room and wants me to shoo them into another ‘paddock’; and, yesterday, he asked me who the small boy was, in the corner of the room. This small boy often features in our faltering conversations.

Anthony: Just over there.
Me: Is it Ming?
Anthony: No, of course it isn’t Ming!
Me: So who is it?
Anthony: I don’t know.
Me: So do you like this kid?
Anthony: I think so.
Me: Okay.

I came home last night in a bit of a quandary. Do I tell Ants he is hallucinating and there isn’t a kid in his room? Why is this hallucinated little boy such a constant presence in Anthony’s room? Who is this little boy, if it isn’t Ming?

Maybe the older Anthony has make-believed himself into his childhood self? I don’t know if this is magic or tragic, but I am trying very hard to figure it out and go with the flow etc.

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Photographs with Anthony

Yesterday, two of Anthony’s nieces visited us at the nursing home.

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It’s only lately that I have realised how important it is to take photos of Anthony with the various friends and relatives who visit. I’m astounded that I haven’t taken more photos of Ants with Ming, with my mother (who often visits him on my behalf), the regular visitors, occasional visitors, the wonderful carers!

My reluctance to take photos is partly to do with people’s privacy; partly to do with savouring the moments rather than trying to capture them on camera; but mostly because I don’t want to post photos of Anthony that are unflattering. After all, he was always rather vain about his appearance. When I showed him the photo I posted a couple of days ago (of him and me), he remarked, “Who is the old idiot?”

If it weren’t for the nieces yesterday, I would never have realised how important these photographs are. I will now coerce the staff to take heaps and heaps of photos of us! My camera is on charge.

Today, I stayed home for a break, and my amazing mother visited Ants and rang me from his room.

Meg: Here he is, darling.
Me: Ants?
Anthony: Hi Jules.
Me: What do you want for tea?
Anthony: Some hot, hot …
Me: Pies?
Anthony: Not ….
Me: What about crayfish or prawns?
Anthony: Save for tomorrow.
Meg: He is fine, darling. Are you?
Me: Yes and thank you, Mama!

Of course the above is a compressed version of a dialogue filled with pauses, and impossible to capture via photography.

But I have decided to ask the various staff members who have become my friends to take photos of Anthony and me.

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Elsewhere

The horrific carnage in Beirut and Paris is an indication of a very serious hatred, fuelled by a proliferation of small pockets of extremists. Regardless of religion, history shows that fundamentalism, in all its flavours, hurts us, hurts the whole wide world.

As I sit with Anthony in his nursing home room, tell him about recent events, and watch him sleep, I realise how insignificant our problems are in comparison to what is happening/has happened elsewhere.

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Anthony’s sense of humour

Yesterday my first-born nephew (I have six nephews on my side of the family), and his beautiful fiancĂ©, visited us in the nursing home. Jared has always had a soft spot for Anthony and vice versa. I didn’t tell Ants they were coming because I wanted it to be a surprise. It’s awhile since they’ve seen each other because Jared lives several hundred kilometres away, and Ants hadn’t met Carly yet. I was very excited, and a little bit nervous, about the visit.

When the young couple entered the room, I was in the middle of feeding Ants his tea; I jumped up and said, “Ants, Ants, it’s Jared; Jared’s here!”

Without the slightest hesitation, Anthony looked up at Jared and mumbled, “Well, I didn’t think it was Jesus Christ.” We all cracked up laughing, as I introduced Ants to Carly.

Anthony’s sense of humour, sometimes expressed in sentences that come out of a void of silence, always flabbergasts me. It can be a bit of a struggle for me to get Ants to talk, to smile, to even look at me. And yet, with a single remark he can have me laughing my head off!

Thanks, Jared and Carly; you two will now become a topic of conversation in the future. I will remind Anthony of his funny remark about Jared not being Jesus Christ, and, in my more contemplative moments, I will, perhaps, wonder if he was.

Anyway, back to Anthony’s sense of humour: I lightly kicked his shin as we were leaving and he said, with mock ferocity, “There’s no need for that!”

[Note to blogger friends: After my modem died and was replaced, my computer then died but has now been replaced, so I am very behind with reading other blogs and Fbook posts. In other words, I have fallen in love with the word ‘delete’ because there is too much to catch up on!]

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Sustenance

Anthony used to be a big eater. I remember one Christmas lunch at his brother’s house across the road where, as a bit of a joke, Anthony’s plate was piled impossibly high with food.

We all watched in awe as he consumed the lot. Afterwards, I had to take him back home to lie down and I remember being astonished at the size of his tummy; he looked like a pregnant woman. I also remember being a bit alarmed by his groans but unable to suppress my fits of laughter as I mopped his brow.

I don’t know if other members of his brother’s family remember this because it was probably about 30 years ago, but it is one of my funniest memories. Sometimes, now, when I am helping him with his lunch, I remind him and sometimes he remembers too.

Except for that day, Ants was never fat; robust and well-built, he was rather vain about his weight. He still is! Over the many years since being diagnosed with Parkinson’s disease and prostate cancer he has lost over 20 kilos and I am rather jealous of his flat tummy. When I admit this, he proudly pats his, and then prods mine in a way that can only be construed as critical.

Anyway, he still loves his food. The main meal of the day at the nursing home is always wonderful; roasts feature regularly and Ants gobbles these up. The only trouble now is that he often needs help, which is why I try to be there by noon, or else get my mother to be there for me.

Dina (my decluttering friend) was there the other day and noticed that Anthony tended to poke at his meal, spilling some of it onto the tray. On another day, my mother told me that he didn’t touch the fish because it was white, the sauce was white, and the plate was white, so he just didn’t see it. On both occasions, he was helped of course.

As for me, I usually resort to feeding him. Yes, I get it about independence and all that but Anthony seems to have forgotten how to use cutlery and often doesn’t remember how to drink from a cup or glass, and the feeder cups seem to mystify him. Obviously, if none of us are there, staff will come to the rescue so that is very reassuring. His food is always cut up for him which is good but the fact that he seems to have forgotten how to negotiate fork-to-food-to-mouth is a bit alarming.

Our conversation the other day may, or may not, shed light on this newish problem. It was noon and a carer brought his lunch in and placed it on his tray.

Once I had unwrapped the meal from its foil and put the bib on Ants, I began to use a spoon to gather the first mouthful. As always, Ants asked me to eat some too; he wanted to share it. And then, looking at the plate of food, he began a rather bizarre conversation:

Anthony: Am I in there?
Me: Are you in where?
Anthony: In there [pointing to the meal]
Me: Do you want to be in there?
Anthony: Yes.
Me: Okay, let me check; yes, you are in there.
Anthony: Good.
Me: So are you okay to eat it now?
Anthony: Yes.
Me: So I am putting you back into you?
Anthony: Whatever you say.

It’s times like these that I remember the Anthony whose appetite for life enthralled me.

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Today

I’ll write more about today tomorrow but, in the meantime, I am savouring today.

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Today.

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Sigh of relief

I have mentioned Dina before (my decluttering friend) and, more recently, Dan (my vegetable garden artist). Well, yesterday they both happened to be here at the same time. Dina was here in the house with me, helping me with a huge pile of filing, and Dan was outside, replenishing the crop of vegetables that had been eaten by rabbits.

The other people who were here were the guys (Eric and Aaron) who I’d employed to rabbit-proof the fence around the vegetable garden and they are doing a marvellous job! I think you have to be Australian to realise what a curse to crops rabbits are. Anyway these guys have dug trenches deep enough to put steel mesh underneath the ground to stop the scoundrels from getting in and eating my carrots etc.

The ‘sigh of relief’ title of this post is just to do with knowing that these are people I can call on, professionally and, sometimes, personally.

And Chris, my computer guru, has helped me solve my cursor acrobatics since getting the new modem – sigh. I have, once again, found it impossible (except via phone) to access the internet.

Dina visited Anthony the other day and helped him with his lunch. He asked for me but she explained that she was there instead of me (this is what my mother does. Then he said to her, as if he were in a restaurant,

“This is only the second time I have been here.”

When Dina told me this I had such a sad chuckle because Anthony has now been in the nursing home for nearly four years.

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3am

Sometimes I get up in the early hours, usually around 3am, and I watch some television, or reminisce myself back into sleep mode.

It is impossible to express how much I miss Anthony being here, in this house, on this/his farm; ‘longing’ is the best way I can describe it.

Often, my heart is tugged awake by this longing and sometimes I feel absolutely desperate to see him.

But sometimes I just don’t bother; I press my face into the pillows and try to avoid the day; I swallow the guilt with a glass of milk; I tell myself that he is in good hands; I sob.

Longing is a weird emotion; its nostalgia cuts into the throat of love, slicing page after page into new, fresh coherent sentences.

It is 3am. I am 15 kms away and wide awake.

I love you, Anthony.

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Nonsense

Whenever Anthony says something during our afternoons together, I either hit ‘mute’ on the television, or ‘pause’ if it’s a dvd.

This is so that I can listen and respond to whatever he is saying, or trying to say. His voice has become very whispery and sometimes croaky lately and, even when he does get the words out, they sometimes
don’t
make
sense….

The following dialogue is an example of how weird and wonderful our conversations can be. I am learning how to be unafraid of nonsense, to enter its world in an Alice-in-Wonderland kind of way, to talk, listen, laugh and pause.

Anthony: How did you know where to find me?

Me: Instinct.

Anthony: You have good instincts.

Me: I know.

PAUSE

Anthony: Can you get this calf to get out of underneath the….

Me: What?

Anthony: This bbbb mmmm toothpaste.

Me: What? Try again.

Anthony: The cat toothpaste.

Me: The toothpaste is free, Ants, and there’s no cat here. Anyway I thought you hated cats.

Anthony: There are five.

Me: You’re hallucinating but I’ll shoo them away, anyway; is that better?

Anthony: Not much.

PAUSE

Me: So, do you think I look different today?

Anthony: No.

Me: Ants, I am wearing a dress for God’s sake. I never wear dresses!

Anthony: Oh.

Me: So what is different about me?

Anthony: Your legs are shorter.

Me: Oh.

Anthony: Is Mum okay?

Me: My mum or your mum?

Anthony: Ours.

Me: She’s fine.

Anthony: Where’s Ming?

Me: He’s at work but he’s coming to visit soon.

Anthony: Does he know I’m at the Rose Hotel?

Me: I’ll tell him.

Anthony: Where is your mother?

Me: Why do you always want to know where my mother is?

Anthony: Well she should be here and I’m worried about her eyes.

Me: Can we just watch the show, Ants?

Anthony: Haven’t we seen this, Jules?

Me: Well it’s a series, so yes and no. We are now up to the third season.

Anthony: Can you bumblebee the cardboard over there?

Me: What?

Anthony: Can you mmmbrrr oh my words don’t. What’s the thing wrong again, Jules?

Me: Ants, you have Parkinson’s, plus you are really quite old. And you have very strange ears.

Anthony: I have perfect ears!

PAUSE

Anthony: You have a sexy stomach.

Me: WHAT? Stop looking at my stomach – I ate too much lunch!

Anthony: Look at mine – I’m thin.

Me: Well there’s no need to rub it in.

PAUSE

Anthony: There’s that baby again.

Me: It’s not a baby; it’s my handbag! See!

Anthony: I think we should go to Golden Valley [his childhood home].

Me: Not today. It’s too cold.

PAUSE

Anthony: Jules?

Me: Yes?

Anthony: Bbbb mmmm – oh I can’t speak.

Me: Do you want the rug on your knees?

Anthony: That’s the elbow, good.

PAUSE

Me: You’re adorable and I love you.

Anthony: Mmm.

Me: You’re supposed to say it back.

Anthony: What?

Me: ‘I love you’.

Anthony: I know you do.

Me: No, I mean you’re supposed to say ‘I love you’ back to me!

Anthony: You already do.

PAUSE

Me: I’ll show you a picture of Ming dressed up as a nurse for Halloween, okay? You are going to be shocked.

Anthony: Nothing shocks me.

Me: Okay, check this out!

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Anthony: He is magnificent!

I rest my case: nonsense is a good thing!

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