My published writing | jmgoyder

Ordinary

by jmgoyder

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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Swings and roundabouts 3

by jmgoyder

We had a couple of family gatherings on the weekend. On Saturday it was my first great niece’s birthday party. Neve, my oldest brother’s first grandchild, is already, at 2, very stylish, so I bought her a multi-coloured tutu which her mother says she loves. The finding of this tutu was somewhat serendipitous because on the day before the party, my friend (E. from the nursing home, who I wrote about a few posts back), had set up a stall of her crafts, including tutus! And, just before she packed up I found the perfect one for Neve. I am kicking myself for forgetting to take a photo of that tutu – oh well.

Then, on Sunday, we had another family gathering at the home of another crafty person – my mother. One of the purposes of this pizza + cheesecake lunch was for family members from down south, and in-laws from Scotland, to get their first glimpse of my first great nephew, Spencer. And it was a great glimpse as you can see in this photo of my youngest brother with his first great nephew.

Like E. (oh to hell with anonymity – her real name is Ellen) my mother, Meg, is talented in the art of craft, her own speciality being hairpin lace. Here is a picture of Spencer in his Meg-made baby shawl.

And the above scanned picture is a newspaper article from a few years ago that featured my mother’s hairpin lace baby shawls! I thought she was going to get famous (I was going to be her rich agent!) but I guess baby shawls are not in the category of investment, especially if they are burped upon.

There are two more babies-on-the-way in my family now so my mother will be busy with hairpin lace once again. In the last 12 months around eight of the nursing staff have had babies and we gave them all a shawl; I paid for the wool and my mother did the craft.

Okay, I need to bring this to a coherent conclusion but I can’t be bothered with coherent. Prince is still trying to impress the indifferent chooks to no avail….

The last time Anthony came to a family occasion was about two years ago and it was a horrible experience – the wheelchair taxi, my family’s empathy, my tears on his departure. When I look back, I am in awe of how we tried always to include Ants in every family gathering … until it just became impossible.

Martha: She’s forgotten to get the laying pellets again.
Mary: What? I’m starving!
Prince: Will you two just shut up!

Happy birthday, Neve!
Happy arrival, Spencer!

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‘Who’s that silly old fool?’

by jmgoyder

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.

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.

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.

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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Dilemma

by jmgoyder

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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Leaps and bounds!

by jmgoyder

Gardening: I have planted vegetables in one of the beds that Jake (my lawn and gardener friend) has created for me. I have no idea whether these lettuce, cucumber, corn, parsley and tomato seedlings will grow up but here’s hoping. I’m a bit too nervous to ring Jake and ask if I have planted these things in the right places – i.e. should they be in the grave-like mounds or in the gullies? Just in case, I did both.

Chooks: Six quite different chickens are gradually getting used to each other with minimal violence. They have a lovely yard so hopefully peace will soon reign.

Lunch: I seem to be going out to lunch a lot lately which is something I only ever did very occasionally before Anthony went into the nursing home. This feeling of freedom is relatively new to me. It was always there of course and Anthony was never one of those dominating, bossy husbands who insisted on the adding cream and more butter and salt to the mashed potatoes. Wait a sec. – yes he did!

WELL, IT’S BETTER THAN NOTHING, YOU GARDENING, CHOOKING, LUNCHING PEOPLE!

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Keeping a record

by jmgoyder

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

Sep 8

Hallucinations are not just visual
by jmgoyder

I’ve been reading some of Oliver Sacks’ work over the last few days. This wonderful, 82-year-old neurologist – most famous for his book Awakenings which was made into a movie – died last week.

When I was writing my PhD thesis on Alzheimer’s Disease, I referred to Sacks’ work often. I particularly liked the way he melded science with anecdote.

I found it particularly interesting today to read about people who have other-than-visual hallucinations. As it is many years since Anthony began hallucinating, I’ve developed a bit of a fascination I guess.

The fact that people with dementia, Parkinson’s disease and other various neurological disorders, often experience various sensory hallucinations, is well-documented in the academic world but perhaps not widely understood by the people on the ground, so to speak – the carers.

It seems important to translate academic findings into do-able care strategies but that doesn’t seem to happen enough in my opinion. Perhaps I’m in a good position to write about dementia better than I wrote about it before because I’m not studying it now; I’m experiencing its nuances via my husband, Anthony.

And I know it sounds weird but I do find Anthony’s condition, especially the hallucinatory stuff, fascinating. Here are some examples:

Visual hallucinations: baby on his lap; calves outside the window; Ming in the room (when he isn’t); children on the floor; dogs on bed; machinery in the room etc.

Auditory hallucinations: replies to conversations that aren’t happening; often speaks to deceased members of his family as if in response to a question.

Tactile hallucinations: feels there is a baby/child on his lap, or a puppy; will mistake his own hand for mine and kiss it.

A couple of years ago Anthony mistook the hoist that the carers were using to lift him from chair to bed as a pirate ship. I remember vividly the evening phone-calls from the nursing home from carers wanting me to calm him down (in retrospect this only happened a few time). This was terribly distressing of course but soon faded off as Anthony got used to the hoist. But sometimes he still says things that indicate to me that bed-time is traumatic.

Just the other day:

Anthony: They attacked me and took all my clothes off and fiddled around with my genitals.

Me: Ants, they were the nurses putting you to bed! Try to always remember that, please.

I wonder sometimes if the most feisty of dementia sufferers ‘see’ the carers as scary characters from pirate ships, as previous enemies, as terrifying strangers. The latter, I think, is probably the best way of describing what a person with advanced dementia might feel towards a caring nurse at bed-time – I don’t know.

Anyway, this was supposed to be a tribute to Oliver Sacks.

Maybe it is.

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Aug 21

Home is where the humour is!
by jmgoyder

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

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Aug 20

Boredom
by jmgoyder

When Ming was little he only once said, “Muuuuummmmm – I’m booooored!” because I immediately retorted, “The only children who ever get bored are booooooring themselves!” From that moment, he became more self-sufficient.

Okay, the above is a summary of several similar conversations with little Ming not long after I stopped being interested in finding the missing lego pieces in a Harry Potter castle or two.

Today, in the nursing home, helping Ants with his lunch, watching the television series, my mother’s visit – the almost clockwork regularity of this routine – struck me….

I recently read an article about how boredom can be a good thing, that it allows a person to sit back and re-perceive things and embrace the boredom as a kind of contentment. I do understand this because I have experienced it. And with Ants these hours are valuable time together as he gets more and more incapacitated.

This whole acceptance thing has been wonderful for all of us but I’m beginning to realise that I have also stunned myself with a kind of boredom. And, if boredom = boring, then I am guilty.

I will still spend many hours per day with Ants, but am now excited about writing more seriously; I’ve even planned a schedule of writing ….

No way will I let that boredom thing creep in.

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Jul 22

Nursing home friendships
by jmgoyder

One of the most beautiful things about being with Anthony in the afternoons – in his nursing home room – is the easy friendships with various staff.

These various staff have various roles, of course: domestic duties, carer duties, medication duties, managerial duties, catering/cooking duties, OT duties, volunteer duties, supervisory/teaching duties, orientation duties, and many, many more. When any staff member (regardless of role) drops in – I always either ‘pause’ or ‘mute’ the TV. This creates a little bit of silence, just enough to enable an interaction that will make Anthony smile. This is because he was always gregarious, and loud, and the life of the party, and nobody will ever know this unless I tell them. Many of the staff now understand how a bit of banter with Anthony can rekindle a semblance of the BIG personality out of the tinyness of who he is now (quiet and thin). They haven’t just discovered this via me, they have also discovered it via him.

There are certain staff that can, in a few seconds, rustle him out his silence, conjure the smile, make him feel valued, but of course they are always rushed, doing their own jobs and not wanting to appear to be wasting time. Recently, due to the rush of work, two of the carers opted to come and visit Anthony on their days off so they could spend more time with him – I was astounded by their generosity, and so grateful!

But, even during work hours, those quick visits are invaluable and, whenever I am there too, staff will often drop in and have a chat with us. I think this is wonderful! Whenever any of the staff drop in to simply say hello to Anthony and me – to chat, gossip, joke, hug – I can come home with the knowledge that he is well cared for and, more importantly in a way, cared about.

Here’s an idea: what if every single staff member were allocated half an hour per day to spend a bit more time with a resident? This could be used in five-minute increments so that staff could linger a bit in various residents’ rooms just for a chat, instead of having to rush off to their various duties. One of the chefs at the nursing home dropped in to Anthony’s room the other day to admire the artificial roses that she thought were real.

Me: Haven’t you noticed these before?
Chef: Yes, but I never have time! They look so real!

We had a hurried conversation and she zipped off back to the kitchen. I wanted to give her a massive hug but I restrained myself as I seem to have become overly-huggy lately. A bit later in the afternoon:

Anthony: Your roses are a hit.
Me: Yes! Anthony: But I planted them. Give that lady a cutting. Me: Yes.

I wish that I could name the various staff who have become friends of ours, those people who, in the line of duty, don’t mind detouring in order to offer kindness and friendship. But I respect their privacy so all I can do here is to say thank you to them, every single one of them, because they will know who they are.

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jmgoyder

wings and things

Ordinary

Swings and roundabouts 3

‘Who’s that silly old fool?’

Dilemma

Leaps and bounds!

Keeping a record

Hallucinations are not just visual

Home is where the humour is!

Boredom

Nursing home friendships

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