jmgoyder

wings and things

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.

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Ordinary

For the last several weeks I have been making pot after pot of pea and ham soup, freezing it in little batches, or serving it to friends and family, but mainly eating it myself. I just can’t seem to get enough of it!

I take it into the nursing home and share it with Anthony often. He is a ruthless great food critic. Some of my experimental additions weren’t very successful; for example, the addition of chilli, mint, capsicums and curry powder didn’t work. I mean it was edible, but it just wasn’t pea and ham soup the way it’s supposed to be, you know?

Having run out of my last batch, I over-enthusiastically over-filled the slow cooker and had to transfer half of the ingredients to another big saucepan before the kitchen floor became a lake of pea and ham soup. So now I have two simmering pots filling the empty house with aroma.

The usual ingredients are split peas, chopped vegetables (onions, garlic, celery, but not capsicums) and, of course, a ham hock. But I do have one extra secret ingredient and I think this makes MY pea and ham soup superior, ha!

Tomorrow, the answer to this conundrum will be posted, as well as a photo shoot of the finished soup. I am hoping that, universally, kitchens, restaurants, food journalists, and people with nothing else to do, will clamour at my blog-door.

But that probably won’t happen because I’ll take a small batch of this big new batch of pea and ham soup into the nursing home and Anthony will taste it and just say, “Not bad” and then we will have the following argument:

Me: What do you mean ‘Not bad’? Why can’t you ever say it’s fantastic or wonderful?

Anthony: Because it’s, well ….

Me: What?

Anthony: Ordinary.

Almost every day, I go in and sit next to Ants, watch television, chill out, answer emails, wrestle with my iPad, for several hours – and he and I have these strange, fragmented, haphazard, conversations. Sometimes it seems really lazy to just sit there with him, always with my hand on his arm, watching Dr Phil then going back to our current series, West Wing.

He is sleepier and sleepier every day this week. I wonder what next week will be like apart from a surplus of pea and ham soup.

Next week will be ordinary, and ordinary is a joy.

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‘Doggone!’

I’m sure Blaze was calmer last time I took him into the nursing home to see Anthony. This time, instead of following me in, he ran across the road to a block of flats and wouldn’t come back until I sat down in the parking lot and pretended I had food in my handbag.

Once I’d grabbed him, I carried him into the nursing home to see Ants. I had envisioned a cosy afternoon watching television with Blaze on Anthony’s lap, snoozing. But Anthony was in the dining room and, despite staff being able to get him to shuffle, using his walker, nearly all the way to his room, both a wheelchair and the hoist were eventually required to plonk him into his armchair. In the meantime Blaze and I went out into the back garden area, then visited a couple of the residents, then sat in the foyer.

When Ants was settled, I carried Blaze in and shut the door wishing I’d persevered in trying to find his leash. He was too excited to stay on Ants’ lap for long and kept wandering around curiously and trying to get out. He’d been patted and admired by staff and residents so I guess he wanted a bit more action. I accidentally shot a whole lot of little videos when I was actually trying to take a photo. The following is the only one that doesn’t include my expletive-ridden “Why won’t this camera work?”

Giving up on the camera, I took about 50 photos with my phone, which all look exactly like this one.

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Fake caption: Man’s best friend.
Real caption: Jules, take this bloody dog away!

In light of this remark, and, after Blaze had done several hundred laps of Anthony’s room and bathroom, refused to relax on Anthony’s knees, turned his nose up at the water in the water bowl I’d brought in, I decided it might be time to go.

It was at this point that I realised there was a power failure because I couldn’t get Anthony’s television to cooperate. Then I got a text from my mother asking me if I were coming to my brother’s barbecue. I answered saying I thought the barbecue was the next day and I had Blaze so might only be able to drop in for a quick drink.

Unfortunately, my departure from the nursing home was delayed when I couldn’t find my car keys. It was suggested by several Blaze-loving staff that I could re-trace my steps. So I shut Blaze and Ants into Anthony’s room and went back to the flats where Blaze had first run away. No keys. I then went back to my car and looked underneath. No keys. Back inside the nursing home, I went back to all of the residents I’d visited. No keys. I went outside to the garden. No keys. I went back to Ants’ room to find them both nonplussed as I emptied my handbag of all its contents. No keys. I rang my mother and said, “No keys”.

Finally (an hour and a half after annoying everyone in my vicinity, especially Ants!) I remembered sitting in the foyer with Blaze. With hope hugging my heart, I shut Blaze in with Ants and ventured to the foyer and … there they were!

I said a (b)elated goodbye to all, gave Ants a big kiss, and came home, promising myself I would never take Blaze into the nursing home again without a leash; and never ever again lose my car keys.

Today, the latter has already happened!

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Ago

‘Ago’ is a word I have never thought about until this afternoon. Now, I miss ago.

Lately, I haven’t been able to find the right words to describe Anthony’s condition as it ebbs away. A few days ago, he was so incredibly, cheekily, the Ants from many years ago; the next day he was like someone comatosed; today, as I left, he asked me to get four pieces of steak for tea.

Physically, he and I both cope well. After all, at the moment, Ants has very little physical pain, and me being a young girl (ha!) of 56, driving from farm to town to see him is not a big deal.

One of the many lovely staff at the nursing home sent me this picture of Ants during an animal visit activity. Thank you so much Chloe!

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This has inspired me to take Blaze (mini-dachshund) in to see Ants tomorrow again. Blaze (son of Inky 2 and Doc 4) will remind us of once ago.

Long
ago.

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Swings and roundabouts

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Yesterday I said, rather blithely, “I refuse to be sad” (about Anthony’s Parkinson’s disease etc.). This morning I realised why it’s possible for me to say this.

Anthony isn’t sad!

It’s as simple as that. Okay, so saddish moments come and go, and the first year of him being in the nursing home was a hell of mutual sorrow. But, in retrospect, it was me shedding most of the tears, not Anthony. In fact often, when I left to come home, he would comfort me.

But it’s now that matters and in-the-now neither of us is sad, which is a bit of a miracle really. The weird irony is that I would not be able to cope with Anthony’s illnesses if it weren’t for his own emotional resilience. I’m not very good at emotional resilience, but Ants is.

People often think that the person in the nursing home is the vulnerable one and that he or she is the one in need of comfort. But sometimes it’s the other way around; it’s the visiting spouse or daughter, or grandson, or friend, who is in need of comfort.

Anthony comforts me!

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‘Who’s that silly old fool?’

I showed Anthony these photos just after I took them with my phone the other day. They’re a bit blurry and way too close-uppish but I wanted to show him what he looks like sometimes.

The first photo shows his usual facial expression. This is often termed the ‘Parkinson’s mask’ and is due to the fact that the facial muscles aren’t working very well.

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Anthony: Who’s that silly old fool?
Me: It’s you!
Anthony: Ghastly.

So then I tried to make Anthony look me in the eyes by shouting “Look me in the eyes or I’ll bop you!” Ants and I have discovered that this rather dramatic method works well.

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Anthony’s smile, trapped for so long inside that Parkinsonism mask, has, as I’ve said before, begun to occur more and more.

Ming disagrees with me because he says that whenever he enters Anthony’s room, he is greeted with that smile. What he doesn’t realise is that his visits are excitingly unexpectedly haphazard, whereas mine are (perhaps) boringly regular.

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When I showed Ants that last photo of his smile, he took my hand in his and kissed it exactly ten times before saying…

Anthony: Who’s that silly old fool?

Me: My hero.

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An auspicious occasion

Here is a photo of my dearest old friend and me at his wedding brunch the other day.

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My dearest old friend, who I have known for over 40 years, got married last week and on Saturday morning a group of us celebrated at a beautiful apple orchard up in the Perth hills.

My dearest old friend, and his partner of 17 years, exchanged rings, and spoke of their love for each other eloquently; a priest, who has known my friend for longer than I have, gave a heart-felt blessing; and then two other friends toasted the happy couple. I had the honour of sitting on my friend’s right hand side during a delicious brunch.

My dearest old friend makes me laugh like nobody else can, cooks the best shepherd’s pie ever; performed Anthony’s and my own wedding ceremony; and was the first person (other than Anthony) to see baby Ming.

My dearest old friend is the only person in the world who can convince me to wear ‘a frock’ (well, I compromised by wearing a skirt).

I am so happy for my dearest old friend and his partner!

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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!

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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.

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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….

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…. like the camellias.

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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!

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