jmgoyder

wings and things

Anthony’s sense of humour

Yesterday my first-born nephew (I have six nephews on my side of the family), and his beautiful fiancé, 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!]

7 Comments »

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.

11 Comments »

A very special afternoon

Yesterday, Anthony’s best friend of over 50 years, Baz, and his beautiful wife, Julie, visited us at the nursing home. It had been awhile since the ‘boys’ had seen each other because I can no longer physically manage outings with Anthony due to his decreased mobility. But Ants has been mentioning Baz lately so I thought I’d just invite this lovely couple as a surprise for Ants.

I got to the nursing home at noon and helped Ants with his lunch. He was a bit blah and not very responsive but, bingo, when Baz and Julie entered the room, his face lit up!

Julie was the one who took yesterday’s photo of Ants and me. She also took this one which I am going to show Anthony today.

12242160_1036413749730673_1167195876_n

Isn’t it a beauty! And here is the beautiful photographer herself.

12231471_1036429573062424_403417383_n-2

She and I caught up as Ants and Baz reminisced. At one point, completely out of context in terms of what Baz was saying, Ants looked at him and said, “I love you and you love me.”

Thank you, Baz and Julie!

24 Comments »

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.

25 Comments »

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!

20151031_120208

Anthony: He is magnificent!

I rest my case: nonsense is a good thing!

23 Comments »

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.

Untitled

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.

53 Comments »

An argument about Anthony’s smile

You know how I’ve been saying how wonderful it is to see Anthony smiling again, and that I’ve been crediting myself with having made a huge effort to get that smile back? Well, Ming disagrees.

Today was a day off work for Ming so he went to see Anthony and I had a day at home. When he got back he told me that he had Anthony laughing!

Ming: Mum, Dad never lost his smile!

Me: You don’t see him as much so you don’t know – anyway you can always make him smile because you’re Ming!

Ming: So can you and so can anybody!

We left it at that; after all there is no point having an argument about a smile. Nevertheless our brief argument got me thinking about Anthony’s Parkinson’s ‘mask’ (the blank, unblinking, slack-jawed expression on his face, typical of PD). And I realised that the only reason I see this more than anyone else does is probably because, when I visit, I am there for hours so I see the fluctuations.

For example, when staff come into Anthony’s room and banter or flirt with him, he smiles; when friends and relatives visit, he smiles; when Ming and I visit, he smiles. So perhaps I should adjust my thinking to the possibility that it has become easier to conjure/coerce that smile? Maybe Anthony’s smile, and even his laugh, was always there, always ready to be there.

Maybe it was my own smile that went missing for so long.

20 Comments »

Dilemma

Last week I received the following email:

Dear Julie,
I am writing with regard to your book titled We’ll be Married in Fremantle. Given increasing warehouse costs, we have had to review the amount of stock that we are holding for a number of titles where sale numbers each year are low. Unfortunately this book is among those selected to be removed from stock. We would, however, like to offer you the opportunity to purchase as many of these copies as you choose at a price which will cover our costs of shipping and handling….
CEO of … Press

Initially I felt humiliated, then I realised that it is now a rather ‘old’ book, having been published in 2001. I also comforted myself by realising that most of the 5,000 books had sold and I could rescue the 300 or so remainders from being pulped at very little cost. I am still deciding what to do.

It’s not that I have any intention of on-selling the books; I certainly don’t want to have 300 or so copies of my own book on my bookcase to remind me that it wasn’t a bestseller; and this dilemma has nothing to do with ego.

During the time of writing my PhD, then re-writing it into a book (several years altogether), I remember being absolutely driven. I wanted passionately to write something that would change attitudes to people suffering from Alzheimer’s disease. And my thesis/argument was so simple: listen, and respond to, the stories, even when they don’t make sense.

So I have a few creative ideas of what to do with those 300 or so copies IF I decide to rescue them from obsolescence.

Prince and Princess don’t have to worry about these kinds of things – oh to be a bird!

IMG_4768

17 Comments »

There’s ‘a Julie’ in the mirror.

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.

IMG_4774

The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….

IMG_4776

…. like the camellias.

28 Comments »

A brief moment of panic

Yesterday morning I received a phone-call from the nursing home manager to say that Anthony had had a ‘turn’, most probably a TIA (transient ischemic attack or mini-stroke). He has had these before but this time he was unresponsive for ten minutes.

As I rushed into town, I experienced a brief moment of panic even though I knew Ants had recovered from the TIA, because the more of these he has the more likely it is that he will have a serious stroke. On the other hand, he has been having TIAs from well before I knew what they were and twice, when he was still living at home, I had to call the ambulance. And, during his years in the nursing home I suspect he has had more of them than anyone realises because he sleeps a lot anyway.

Four years ago, at the huge 75th Ming and I held for him here, I remember being fairly certain it would be Anthony’s last birthday. His prostate cancer was well advanced and so was the parkinson’s. Daily tasks had become extremely difficult for him and I was exhausted. Perhaps it was this exhaustion that made me more accepting of the fact that he might die soon.

But now that all his care needs are fulfilled by the nursing home and I have the leisure to simply enjoy Anthony’s company, the thought that he might die soon is unbearable. Having outlived his prognoses by several years already, I have become used to the idea that he will continue to live for a long time.

So the thought that he might either die or become even more incapacitated by a stroke is horrifying. I can’t imagine my life without him but maybe I should prepare myself a bit. Who knows?

Anthony’s fortitude amazes me; he is so resilient! When I said to him yesterday, “You had one of those mini-strokes again, Ants”, he retorted, “No I didn’t – I just fainted.”

But for the rest of the day he kept hold of of my hands with both of his until I left to come home with the usual goodbye.

Anthony: Don’t be long, Jules.

Julie: I’ll be back soon, my beautiful man!

IMG_4201

30 Comments »