jmgoyder

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

THE JOE STORY

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]

http://www.fremantlepress.com.au/books/1039

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 (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!

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]

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.

http://www.fremantlepress.com.au/books/1039

THE JOE STORY

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!