wings and things


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!



Anthony’s ‘girlfriend’

There is a lovely woman (I will call her Mary) who works as supervisor during afternoon shifts at the nursing home. She and Anthony have such a rapport now that his slow smile stretches into a grin when she enters his room to give him his 4pm meds. The three of us now joke that she is his ‘girlfriend’.

Today was no exception:

Mary: Hi Anthony, I’ve got your pills.

Me: Ants, it’s your girlfriend!

Anthony: Hi … (smiling)

Me: It’s Mary, Ants.

Anthony: Hi Mary.

Mary: Here are your pills, Anthony.

She and I then got chatting while Anthony swallowed his pills (it sometimes takes awhile). I had my one remaining PhD student’s nearly-completed thesis on the table and was checking it for typos. Mary was curious so I told her I used to work at the university and that I’d done a PhD too years back and turned it into a book about Alzheimer’s disease. She asked if she could read it so I gave her the copy I have in Anthony’s top drawer. Then she got called away.

A few moments later, I asked Ants if the pills had gone down.

Me: Have you swallowed them?

Anthony: No.

Me: What? Do you need water? Open your mouth. Yes, they’ve gone down, your mouth is empty.

Anthony: No.

Me: What do you mean ‘no’?

Anthony: Ring the … girlfriend. She might have them.

Me (laughing and hugging him): I don’t need to ring her – she’s here! And the pills have gone down, trust me!

I continued to read the thesis when all of a sudden Anthony belched loudly. I put my pen down and glared at him.

Me: How dare you burp in my presence!

Anthony: I’ll have you know … I’m whatshername’s boyfriend.

I find it absolutely amazing that, despite the confusion of Anthony’s dementia, his sense of irony and humour can be so extraordinarily spot on!

After laughing my head off, I took my leave with the usual excuse of ‘just going to get some groceries’.

Anthony: Don’t be too long.

Me: I won’t and just remember I am your real girlfriend.

Anthony: No you’re not – you’re my wife.

It was a very happy drive home.

Another irony is that Mary has borrowed my book which is based on a similar experience from my years-ago nursing days. The way Mary and Anthony interact parallels my experience with a patient I called ‘Joe’, whose refrain became the title of the book “We’ll be married in Fremantle.”

Perhaps the fact that I no longer work in the dementia wing is, despite the difficulty of having had to make this decision, a good thing. As I am now a lady of leisure again, I have much more time to write about the subject of dementia which is so close to my heart and has been for over 20 years. Now, of course, it’s even closer with Anthony in its grip.

My mother and I had a laugh on the phone today because she had visited Anthony in the morning and, after an hour or so, he suddenly said, “Are you going home now?” Having been dismissed, she gathered her knitting and left after giving him a hug.

Me: How come you asked my mother to go? She was hurt.

Anthony: I didn’t.

Me: You asked her if she was going home and she took the hint!

Anthony: She’s not you.

Okay, so my mother is out of the competition but there is still Mary to worry about – haha!


Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”


The Anthony book

I am finding it extremely tedious and time-consuming (and a bit traumatic) copy/pasting bits of my blog into a possible book about our journey into the land of Parkinson’s so I’ve decided instead to begin to write the story afresh. Going back to the sadder blog posts is only making me sad whereas writing the story with the benefit of hindsight, and from a position of acceptance seems a better way to approach the project. The blog posts are a reliable historical record of events so I can always refer to these, and even quote myself (weird!) if need be.

I don’t want the book to be in any way academic because my last book, We’ll be married in Fremantle, was a rewrite of my PhD thesis so didn’t quite get the interest (or sales!) that it might have if had been marketed differently. For instance, the title of that book in no way indicates that I was writing about Alzheimer’s disease and about how to appreciate the storytelling abilities of sufferers.

Rewriting something seems to me a bigger task than writing something from scratch; rewriting the thesis as a book was a very long process (two years!) so I don’t want to have to do the same kind of rewriting thing with the blog. I have a bit of a problem at the moment with the whole re thing!

Instead, what I want to write is a book that is partly auto/biographical, partly how-to, and partly humorous. I want each chapter to incorporate each of these attributes and to work as a stand-alone essay/story.

Today I saw the biggest smile I have seen on Anthony’s face for a long long time and the carer who came into his room to give him his pills was astounded! He has almost begun to grin again now – incredible! Is my conjuring of daily smiles actually improving the muscle function in his face? If so, maybe some scientific person could research this and send me the findings ha! Hint to the Michael J Fox foundation….

The Anthony book will not be a very big book because I don’t want to repeat stuff that everyone already knows about the hardships of disease and caring etc. I just want to write, in the same personal style I use in this blog, about our slant on the more difficult dilemmas Ants, Ming and I have faced, in the hope that this will be helpful to someone/anyone!

Here is my chapter plan so far:

1. Thinking about the unthinkable (diagnosis shock, incontinence, fear of nursing home possibility)

2. Losing the love story (how having to care for someone takes its toll and affects relationships – Ming’s perspective useful here)

3. Hiding (carer withdraws, escapes, becomes workaholic in her job in order to avoid husband’s constant needs)

4. It’s not just all about you! (finding some sort of balance between young and old, sick and well, angry and happy, sad and funny etc.)

5. Lost and found: Anthony’s smile.

Anyway, that’s what I have come up with so far in terms of structure and content and any feedback appreciated!


The gift of listening

Years ago I wrote my PhD about the importance of listening to people with dementia who were still able to speak. In the process of turning the thesis into a book for publication, I began to realize the importance of listening in general. At the time, Ming was a little kid and Anthony wasn’t so ill, so I would listen to Ming’s babble and Anthony’s hearty stories with equal attention.

Listening is not always easy because sometimes what you are hearing may not make sense, might be boring or inane or moany, could be longwinded and require patience.

To listen, you have to be able to shut up for awhile, give your own voice a break, and focus on the person you are listening to.

Yesterday, after my altercation with Ming, he broke down and begged me to listen to him and I remembered, with a thud of remorse, that he had been asking me this for some time.

So we sat down together, cried our eyes out in separate chairs and then he began the story of his 3 days away at the Southbound concert festival.

As I listened, I saw how his face glowed in the telling of each episode. After two hours, we were laughing again and I asked for an intermission. “That’s okay, Mum, we can do Episode 3 tomorrow.”

I am beginning to think that the best gift you can give anyone is to listen to them.


The Joe story 5 (final excerpt)

The following excerpt skips 200 pages from the last one and is part of the last chapter of the book.


Joe was dying.

I would chatter away, holding his hand, sitting on the side of his bed. He would look at me, then look away, then look at me again. His eyes, which had been so blank and uninterested when I first met him, and had then, for such a short time, become so twinkly and mischievous, now alternated again between blankness, bewilderment and obvious physical pain.

Joe stopped speaking altogether.

I cannot presume to know what he was thinking, what he was trying to say when he opened his mouth and nothing came out. But I did know the dreadful pressure of his hand a few hours before he died, the groaning sound in his chest, the whispered barely audible nonwords, the rough, familiar feel of this cheek, and the tears which stood in his eyes in a proud kind of way, as I kissed him goodnight for the last time. [pgs. 203-204]


The Joe story 4

THE JOE STORY (continued)

By this time everyone, staff and patients alike, had entered into Joe’s romantic fantasy. The story had even become part of handover and often, when I was doing an afternoon shift, I was greeted with, “You better go and see Joe, Julie – he’s been asking for you all morning.” Joe, who had always been unpopular with the staff because of his grumpiness, began to flirt with all the nurses. Sometimes I would come into the dayroom to find him holding the hand of another nurse laughing and joking. On seeing me, he would quickly let go of her hand look up at me guiltily. Later he would whisper anxiously, “Don’t worry Julie, you’re the only one I love.”

A striking repercussion of the Joe story was the way in which Joe’s sense of identity was transformed from that of a sick old man to that of a virile young man. Even though we were acting out a kind of fantasy, there was nothing unreal about the way he began to feel – happy, attentive, more involved in what was going on around him – and this was a man who, according to some of the staff, had sat for years in silence, using his voice only to yell abuse, or to cry.


The thing Joe said to me most often was, “We’ll be married in Fremantle, my darling.” He must have had a wonderful wedding, and a wonderful marriage, for this to feature so much in his conversations with me. [pgs. 10 – 12]

So that is why I entitled the book, Well be married in Fremantle. In hindsight, it was a probably a bad choice of titles because of its ambiguity, ie. it wasn’t obvious that the book was about Alzheimer’s Disease, hence it was a difficult book to categorize and market – oh well!


The Joe story 3

THE JOE STORY (continued)

Gradually he [Joe] began not only to recognise me but to become more and more enamoured, enchanted, with the idea of a romantic involvement with someone. His memories, and his ability to verbalise these memories, had been refuelled by my interest and he began to ‘court’ me. ‘Sarah,’ with whom in his mind I was now conflated, had been his fiancee seventy-odd years ago (Joe was now in his nineties). Not only did he speak of her with extreme reverence, but he seemed to think that she was me.

The ‘courting’ began one day in the middle of his shower. He looked up at me from the commode chair and said, “Julie, I have something to ask you – will you marry me?” I was taken aback but, feeling that it could do no harm, and not wanting to seem hesitant and perhaps hurt his feelings, I said, “Yes, I’d love to, Joe,” at which he grasped my hand and kissed it saying, “I can’t believe you’ve said yes, Julie. I am such a lucky man.”

Once our ‘engagement’ had become established in his mind, Joe quickly gained confidence and began planning the wedding. Every time I was on duty a new chapter of the story unfolded. One of the most fascinating aspects of the Joe story was the way in which he plotted what was for him a future event, using very vivid reminscences of events that happened so many years ago. Coincidentally, I had just become engaged to someone else and this gave the experience with Joe a surreal weirdness. When I came to work one day wearing my engagement ring for the first time, Joe was one of the first people to notice. “I hope you like it, Julie. It took me so long to choose.” [pgs. 8-10]

Okay, just to give a bit of time perspective to the above, these actual events occurred in 1992, the year I began my PhD and the year Anthony I were engaged.  The PhD took a bit over three years to complete (Anthony and I married in 1993 and Ming was born in 1994, towards the end of the PhD). After that it took another couple for me to rewrite my thesis into book form for Fremantle Arts Centre Press and yet another couple of years for it to be published. The ironies then and now are rather extraordinary (well, to me they are!) I have two more excerpts to type up after which you will have to buy the book – hehe!


The Joe story 2

Here is the second excerpt from my book, Well be married in Fremantle:

THE JOE STORY (continued)

For the rest of that afternoon, I popped in and out of the dayroom to see if he [Joe] still remembered me, and I waved at him from the corridor as I went past. But mostly he didn’t respond at all so I’d pick the paper towel up from his lap or the floor and show it to him again, and repeat my request. Each time he smiled in a surprised way, as if at all the unexpected attention, and repeated my name.

It was several weeks before Joe could remember my name without some sort of prompting. I’d been quite persistent in finding the name tag or writing another one, which he would often stare at for a while before putting it into his shirt pocket. Then one day I came into the dayroom and Joe, seeing me approach, suddenly said,  “Oh, oh … I know you, you’re … you’re ….” But the question mark hung in the air and he lowered his head again, defeated. A few of the other patients, having witnessed my daily attempts, shouted, almost in unison, “Julie!”

“JULIE!” Joe yelled out triumphantly, and reached out and took my hand. It was quite a moment. A few of the patients actually clapped, Joe beamed I went around excitedly telling all the other nurses.

From then on Joe never failed to remember me. I had only to walk past the dayroom down the halllway and he’d yell out, “Julie, Julie, that’s my Julie!” – always rustling in his pocket for that elusive piece of paper, as if to prove to me that I was the name written on it. [pgs. 8-9]



The Joe story 1

Here is the link to my book, We’ll be married in Fremantle, for those who asked. It was published waaaaaay back in 2001 but is still available and is now also an e-book (which I only just discovered!) Below the link is an excerpt from its prologue.


I first met Joe several years ago, when I began to work in a small nursing home in Western Australia. I’d been nursing for about ten years and had looked after a large number of people with Alzheimer’s Disease before meeting Joe, so I didn’t take much notice of him at first. He was just another Alzheimer’s patient sitting in an easychair, mostly silent but sometimes yelling out in sudden anger. I changed his trousers when he was incontinent, I showered him when he was on my list and I fed him his dinner. In the daily reports I would write “Joe, no change”.

Things did change however.

One afternoon I was in the panroom which was directly opposite the entrance to the dayroom. Joe was always seated in the chair facing this entrance. As usual, he was slumped down in his chair so I went over and hoisted him up into a more comfortable position. He suddenly lashed out and punched me in the side shouting, “Leave me alone, you bastard!” – which, when he did speak, was a fairly typical coment from him.

A bit stunned, I went back into the panroom and watched him. He looked up at one stage, caught my eye and shook his fist. So, I thought, he recognises me. This was a bit of a surprise, as I thought Joe was ‘too far gone’ to recognise anything about his immmediate circumstances. He had always seemed very listless, depressed even, and often just stared at the floor. Suddenly intensely curious about whether Joe would be able to recogise me, I wrote my name in big letters on a piece of paper towel and, without thinking too much about what I was doing, went in and showed it to him.

He was a bit bewildered at first; then, at my insistent “Joe this is my name, do you think you can remember it?” he looked a the paper and then up at me, scowling. I crouched down beside his chair and said, “My name’s Julie, Joe. You can keep this piece of paper so won’t forget it. Is that okay?” He looked at me again, looked at my name and, just as I thought he was either going to punch me again or just ignore me, he grinned, repeating several times, “Julie?” I was pretty thrilled as I hadn’t seen him smile before, let alone grin. [pgs. 7-8]

‘The Joe story’ was the fuel for the book because it was Joe who transformed my attitude to people suffering from dementias like Alzheimer’s Disease. My relationship with Joe, though short-lived because he died, remains the flavour of the book (originally a PhD thesis). This excerpt is the first of five.

The book’s fundamental thesis/thrust was to do with how listening to people with dementia who can still speak is far more useful, and far kinder, than dismissing their stories as meaningless. At the risk of sounding solipistic, I am now finding my own book is helping me to cope with what is happening to Anthony. How ironic!