jmgoyder

wings and things

Peacock poop

I thought it was time for a light-hearted post so here goes.

Every morning I am woken up by a bang-crash sound from the back of the house. King Ken has never done this before but he is now attacking his reflection in the back veranda windows on a regular basis. He does this so ferociously that I’m a bit nervous he will actually break a window.

Here he is pretending innocence.

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Now, apart from the alarming regularity of this banging and crashing, King Ken’s obsession with his own reflection also means that there is more than the usual amount of peacock poop waiting for me every morning outside the back door. Obviously I have to wait for this to dry before I can sweep it away because my new straw broom (which I can’t find anyway) doesn’t take kindly to wet peacock poop.

I like to tell Anthony about these mini-adventures and show him photos, but his verbal responses are now becoming few and far between. Our friend, N, another resident in the high care section, is also becoming less vocal although she still possesses a wonderful ability to laugh loudly. N’s daughter and I have become friends via our mutual concern for each other and our two loved ones.

Yesterday Ants couldn’t get any words out at all, no matter how much he tried, so I began to “interpret” what he was trying to say by suggesting possible topics from recent conversations. I didn’t always get it right but, when I did, he would sigh with relief (or maybe resignation) and give me a small smile. He was very sleepy and silent but not sad; he is never sad and this amazes me! I have never known anyone to be this resilient and content and this is a gift to me now because he has always had a rather calmingly buoyant effect on me.

I love metaphors and I was thinking that King Ken’s bang/crash might represent what used to be Anthony’s very healthy ego (still intact). But maybe King’s antics represent me versus the brick wall of acceptance.

As for the peacock poop, or any poop for that matter, it is its own metaphor and I just need to find my straw broom!

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Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Special K’s operation

I wrote about this topic rather clumsily a few days ago, before my nephew Special K’s operation to remove the large plate in his thigh. Many thanks to those who commented but I deleted the post, and its Facebook counterpart, because I thought it might be better to wait until after the operation was over.

At 13, Special K is now over 6’2″ so the plate had to be removed because of how much he has grown since the car accident. Like all of our extended family, I was feeling a mixture of anxiety and confidence that it would all go well.

Well, Special K came through the gruelling operation (apparently an actual hammer was required) with flying colours, and was discharged the very next day – yesterday! As I was in Perth anyway, I was able to visit my brother, sister-in-law and SK in their hotel room. SK was lying on his bed, nonchalantly doing something on his iPad, while his mother was zooming around the city looking for KFC. I had a chat with my brother, then the chicken arrived much to SK’s relief.

As I watched him gobble his 5 pieces (or was it 6?) and noticed his parents’ tired but relieved faces, I squeezed Special K’s toe, then left them all to rest. SK was having to, once again, use crutches and take painkillers, and they were all planning an early start this morning as they live around 6 hours south of Perth.

I only live 2 hours south of Perth so I got home not long ago, and immediately checked my emails. My mother had sent me one and I was amazed to see that Special K and co. had dropped in to have breakfast with her on their way home – a significant detour!

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I love this family.

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Surprise

Yesterday, I arrived at the nursing home much later than usual (around 5pm) because I was going to a 21st. Anthony was eating his evening meal and much more alert than I expected him to be. Sometimes he is unable to even form a word, let alone a sentence, especially late in the day. But he is good at surprising me!

Anthony: Where have you been?
Me: Oh you know, busy.
Anthony: Well, you’re here now.
Me: Not for long. I’m going to a 21st!
Anthony: Whose?
Me: G’s, you remember G?
Anthony: Am I invited?
Me: Of course but I don’t think you’re well enough.
Anthony: Rubbish!

I helped him with his meal while we watched the news.

Anthony: Well you better go then.
Me: What? I don’t have to go yet. Don’t get huffy with me, boy! I spend a lot of time with you, almost every single day, and when I’m not with you I miss you. I’m doing my best, Ants!

And then Anthony came out with such an eloquently profound statement it almost took my breath away… but I am developing quicker reflexes.

Anthony: Well, compared to the time I’d like you to be with me, you’re not with me at all.
Me: Oh shut up, you silly old fool!

Then I hugged and kissed him and, as soon as he smiled, I left for the party.

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When I look at these wedding photos, recently dug up, I feel amazed that we still have that same joy, regardless of the circumstances. And I feel a constant sense of surprise!

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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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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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Another day with Anthony

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.

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Turning corners

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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Yes, that is Ming on the left in the above photo. I was feeling a bit blah yesterday morning but, when I switched on my newly-switched-on computer, and the internet rushed into my laptop, this photo was the first I saw.

Okay so it took me a few seconds to realise that it was Ming! Other photos followed and I was so overtaken by laughter that the whole blah thing disappeared. I got showered and dressed and drove into town for lunch with this beautiful nurse.

Once I figure out how to save the photos I took of Ming in his nurse’s outfit, as he and I lunched together during his break, I will post them. It was the most glorious hour of halloween hilarity.

And then I went to the nursing home to see Anthony. I arrived at 1pm and left at about 4.30pm. For these hours I was unable to wake him up no matter how much I shook his shoulders, squeezed his hands, shouted (as quietly as I could) ‘Wake up, Ants!’ His nephew visited, a friend visited, the nurse-in-charge came in and checked his blood pressure etc. and reassured me that all was well. I visited the dementia wing a couple of times, showed several staff and residents the photos of Ming, laughed and joked, in the hope that when I returned to Anthony’s room he would be awake. He wasn’t.

The possibility that Anthony might die during – or soon after – one of these TIAs (which seem to be occurring more often), is a corner I have been hesitant to turn into. I was calm yesterday afternoon, then terrified, then resigned. When I got home, Ming was here, and listened to my tearful fears in the same way I listen to his; after all, we both love Anthony.

It is entirely possible that Anthony will live for many more years; it is equally possible that he will die soon. I am not ready for the latter, despite many attempts to BE ready, and I cannot imagine my life without Anthony in it. His room in the nursing home, the staff who have become such wonderful friends, my arm around his shoulder, our long afternoons watching television, bantering, just being together, sometimes reminiscing, sometimes eating and drinking, laughing, looking at photos, doing paperwork, engaging with staff, residents, friends, relatives, visitors … his room has become my refuge, my home.

Ah, but I do have another home – a place where I can eat, drink, write, relax. I can be one of those trendy people who drink short blacks whilst writing articles about the meaning of life and death OR the proud mother of the waiter at Corners on King.

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

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“Handsome man!”

One of the staff at the nursing home always makes a point of greeting Anthony with “Handsome man!” Her wide, glorious smile almost always elicits his own smile and today that was the case.

The simplicity and constancy of this gesture is extremely comforting for me too, because I know she, and so many other staff, care about him. Genuinely.

A recent conversation:

Anthony: They love you. They always ask for you – they say, ‘Where is Julie? Where is your wife?’

Me: No, it’s you they love, not me, silly!

Anthony: No, it’s you! They always want a Julie in the room.

This afternoon, Anthony was extremely lucid until around 4.30pm when he kept ‘seeing’ me on his right hand side, when I was on the left, and vice versa.

Anthony: Where is Julie?

Me: You mean me?

Anthony: Oh there you are!

And that was when she came back – this beautiful staff member – and said those magic words:

Handsome man!

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The suffering conundrum

I just don’t get it. Why does one person cop multiple illnesses? And why does this seem to happen to the beautiful people?

Later this week I will be travelling to Perth to meet my friend at the airport, after which we will spend two luxurious nights at a resort. During the days, I will take my friend to her medical appointments; in the evenings we will sip wine, eat pizza, and reminisce.

She was the first kid to say hello to me on the bus to school after my family moved from PNG to Australia. Since then, we have had years of little contact due to busyness, geography etc. but, more recently, have reconnected.

‘How is it possible for you to still laugh?’ I asked her on the phone tonight, to which she replied with her laugh.

My friend suffers severe eye conditions and an unhealed broken foot and yet she can still maintain laughter within her suffering. How does she do this?

I haven’t mentioned her name because she is very private but I so wish I could salute her publicly because she is amazingly philosophical and pragmatic.

And maybe she and I will make a bit of sense out of the suffering conundrum when we see each other in a couple of days. I can’t wait!

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Sorry about that image. Prince always seems to want to give me the back view. Here is a better view.

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