wings and things



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!


I have found my footing again.



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!


I love this family.



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.


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!


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.”



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.


Facebook friendships

Over the last few months I have become Facebook friends with many of the staff at the nursing home where Anthony lives. Some of the staff have ‘friended’ me and I, too, have actively ‘friended’ others. This means that my blog (which automatically connects to my Facebook) is accessible to the very people who look after Anthony.

This is a little bit scary because I feel like I’ve made myself vulnerable. On the other hand, it is the most wonderful thing to be able to connect with these fantastic carers outside the context of the nursing home. The Facebook connection is virtual, yes, but also very real because I see many of these beautiful people every week and sometimes every day!

I didn’t deliberately plan these Facebook connections; it just kind of evolved and now I feel enthused to connect with as many staff at the nursing home as I can. I want to thank them personally; I want to acknowledge their amazingness; I want to know about their lives, their woes and joys.

I want to hug them back. So, to the staff at Anthony’s nursing home (yes, he thinks he owns it), many many many thanks! I think we can use Facebook to communicate.


Photographs with Anthony

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


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.



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.


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!]



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.