12 November 2014

Flower of the week

It's just a humble creeper - but boy can it creep!

I only remember buying two hoya plants (genus Asclepiad) in all the years I've lived here. But as the creepers grew, I would stick pieces here and there - usually in hanging pots.

I don't know what it is about these tough little guys with their leathery leaves that always fascinates me. I've never seen a bird feeding from the flowers, though I suppose insects must.

But once a year - in late Spring - they flower. And it's always such a pleasure to see where these appear.

'Wax flowers' is the common name - and as soon as you handle one of the multi-headed blooms you can see where the name comes from. The waxy flowerheads don't smell, they fall to pieces as soon as you pluck them so are no good for picking. But...

...appearing as they may do anywhere along the creeper's roaming stems, they're always a delight to behold, even if I know that after flowering is finished I'll have to disentangle some of the plants from places where they have no business going - e.g. under the gutters!

Let's hear it for tough wiry survivors.

No flowers yet on this one, even though it has colonised much of the pergola that it shares with a number of other plants and with frangipani (plumeria) just now coming into leaf.

18 May 2014

Half a year without my sweetheart

Six months ago today, Allen died. Sometimes it's as fresh as if it were yesterday. At other times, I can't remember having him near. But I do often hear him reminding me of the power of music. And this morning the ABC played a wonderful version of Beethoven's 9th Symphony. What better reminder that hope and beauty can transcend loss and sadness.

This was Allen's last book - that is, the last one he never stopped trying to read. It's a notebook he built up during his final 10 or so years, when music became his greatest consolation. In it, he had pasted translations of the lieder he listened to over and over again. Like this one (Maiden's song), from a Brahms song cycle:

On Judgment Day I will rise again,
and immediately look for my sweetheart
and if I cannot find him,
I will lie down again and sleep.

Heartache, you Eternity!
Only with another comes happiness!
And if my sweetheart comes not in,
then I don't wish to be in Paradise!

14 May 2014

Moving on (and in)

This is the sort of day it has been.

My mood all day has been much the same, influenced no doubt by the tail end of a debilitating flu or cold. But I've been at my desk anyway, preparing for the final of ten tutorials I will have presented in as many weeks for two first-year groups of teacher-trainees at the local university. I was pleased to be offered this semester of part-time work. It was one of several new pastimes that I hoped would help me learn to live alone and begin to 'move on', whatever that means!

So ten weeks ago, I moved my office out of its former temporary location in the second bedroom, into the small galley room that had been Allen's office ever since we moved here in 1996. My own larger office used to be in a separate studio building, now a second guest bedroom. But I had to give up that larger space when it became impossible for me to be that far away from Allen for any length of time. I could have returned to the studio-office, now that my caregiving duties are no more. But several things dissuaded me from doing that.

First was the attraction of not having to vacate my office whenever I have visitors. The studio has the double bed for visiting couples; the second bedroom has a single bed (which is where my grand-daughter sleeps on her frequent visits). But Allen's little end-room office - once a verandah - is too small to accommodate a bed. So it is always free, no matter how many people are sleeping in the house for the weekend or longer.

Then, too, the distance from the house to the studio meant my laptop inevitably ended up in the house, perched on the dining-cum-sewing table. That's because going out to the studio to check emails and do my banking and other routine tasks is just too much of a nuisance late at night or when it's raining. Giving up the larger studio space seems a price worth paying for the convenience of having all my office things just a few steps away from my bedroom.

What really settled me in my decision to make Allen's office my own was just that: the fact that it had been his. Until I moved in here, this room off our bedroom was a furious empty space that screamed his absence every time I looked into it. I could hardly bear to enter it. So I moved in and made it mine, which meant going through all his shelves and papers first, of course. But that was relatively easy. Allen had been doing it himself for years before he lost the ability to read and write. He was always a well-organised man - socks rolled in his drawer, suitcase nicely packed, paperwork all in order. He had long ago sorted everything he wanted to keep or pass on, and discarded just about everything else.

I moved my things in and found, to my surprise, there is plenty of space. First I discarded several wheelie-bins of old paperwork - things from my university degrees and old freelance jobs going back decades. All the books and other curriculum materials we produced during my ten years as manager of the state's educational publishing facility have gone to our regional university's library. Dozens of other books are going here and there. It's a very liberating feeling, as I remember Allen assuring me when he did the same with his theatre library and paperwork a long time ago - a move which horrified me at the time. 

My new little office has been quite pleasant during the warmer weather - even though it's the only part of the house that doesn't have access to air conditioning. But we rarely used the aircons in the rest of the house anyway, thanks to good insulation throughout and a perfect aspect in all living areas. This office has both eastern and northern-facing windows, so the winter sun streams in but there's no exposure to the hot western summer sun. I've been amazed how cosy the room stays now that our cooler winter weather has arrived. Since it's small and has good windows, the tiniest bit of sun heats it up nicely. I can't help chuckling when I remember now that even after he could barely do anything constructive in the way or reading or writing, Allen still disappeared into this enclave after breakfast every day, sliding shut the glass door connecting it to our adjacent bedroom. In his last months, I would put an opera on his computer for him to watch. I now realise that because his tiny frame could no longer regulate his body temperature very well, he was probably mainly enjoying the room's warmth. - probably just one of hundreds of things Allen could no longer express.

Right outside one window here a beautiful golden penda is growing, a tree I planted in 2009 when I painted the room for Allen and had tiles laid down. As I was closing the blinds this afternoon, I looked out to see the first of the golden penda's new season's flowers had just opened. The light was fading, but I photographed it anyway. I need reminders that life goes on.

26 January 2014

Even so...

I don't know when I will once again be able to start some regular posts here - or some writing elsewhere. My energy at the moment is totally occupied in creating some new kind of order - one that will get me through this interval of time between Allen's presence in my life and the acceptance of his absence. But I want to hold on to some of the thoughts I've had during this period. And as these are often framed in letters to friends and family, I will copy to my blog excerpts from some of these from time to time. I hope later on to be able to come back to these thoughts with less pain and more pleasure in remembering my late husband....

Dear Malcolm,

I was again in tears – reading your lovely words, which I will ask Julian to read at our lunch next Sunday. Thank you so much for taking the time. And thank you, too, for capturing so well the spirit of the man I fell in love with 35 years ago.

So much of Allen’s lively enthusiasm, wit and intelligence was severely taxed in recent years by the dreadful disease eating away at that beautiful brain. Even so, right up to his last days at the beginning of what was supposed to be a short few weeks of (my) respite, he could appreciate the humour in some of the antics of fellow residents in the dementia unit. Watching a guy do something silly at a nearby table while I helped Allen to get a slippery omelette into his mouth, he looked at the guy and then over at me and raised a quizzical eyebrow, as if to say: “Get a load of him!”

Except in short episodes of delusion, mainly in the evenings or during the night, Allen and I never lost the ability to connect – even as words and language lost almost all meaning for him. He was taken to hospital after just his third night in that respite facility, when he apparently ingested vomit while lying in his bed. In all our years together, I can’t remember Allen ever vomiting – even when in hospital. So it will always be a great mystery to me what actually happened. But I know when I arrived there in the morning, and sat with him while we awaited the ambulance, he was already on oxygen and struggling to draw breath. Less mysterious is the fact that he just could not rally during the next four days in hospital, but continued to deteriorate with a terrible pneumonia.

I knew only too well that Allen had been wanting for months to be finished with his struggle. He could no longer manage to read anything but the occasional word, couldn’t write words or even letters and could only barely understand the grammar of even the simplest of spoken utterances. He was so very isolated, and his physical mobility had been likewise impaired. He just couldn’t control the voluntary and involuntary actions of many of his muscles. Each morning while I shaved him, for example, his right hand would perform a kind of pretend-shaving, and I’m not sure he understood which of us was actually holding the razor. He could only shuffle along on his walker – but always insisted on accompanying me to the shopping centre, sometimes waiting on a couch near Woollies if he didn’t feel up to the whole supermarket slog. But when we got home, he never failed to help unpack the bags and put whatever things away he could manage. He just wasn’t one to sit idly doing nothing. And yet he was losing interest even in listening to or watching the many opera DVDs that Chris had sent him from China. He felt all his forces – both physical and mental – slowly evaporating. And he just hated it.

I don’t think he had the will to fight one more battle with pneumonia – and he’d had several. And four days of IV antibiotics had done nothing to reduce the infection. He had to be on IV hydration, too, as he could no longer swallow anything. So it was a relatively easy decision to accept the doctor’s offer to begin morphine – ostensibly to minimise the pain of his difficult breathing. But we all knew what it meant. I had no hesitation in telling the doctor: “Let him go”. Allen was to all intents and purposes unconscious in the last 24 hours or so before that, but I think even he knew this was his chance to slip away. And instead of the two or three days we’d been warned it might take, Allen was gone in just a couple of hours, peacefully drawing his last breath in a lovely corner room with tea-trees and a bright blue sky outside our window. I long ago had to come to terms with the Allen I knew and loved no longer being available to me. But I’m still coming to terms with Allen not being in the next room, dozing peacefully in his favourite armchair. It’s going to take a long time. I’m glad his battle is over. Even so.....

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.