Medication Zero, Dad Three

First, sleeping tablets failed. Then, desperate to find something to calm my father’s nighttime agitation, his psychogeriatrician prescribed an antipsychotic. That failed too. Next came an antidepressant, Avanza.

Avanza didn’t work. It didn’t help Dad sleep but made him so agitated and confused that several times he said he wished he were dead. All of that on only one small dose. One tablet. Even the next day he sat at the kitchen table with his shirt off, his hair all over the place, completely incoherent.

So many people described how Avanza helped them to sleep that a week later I tried again with a fraction of a pill. The confusion wasn’t as bad but it was definitely worse than usual and there was no improvement in his sleep.

Now we’d tried three different commonly used medications. None of them had worked and the side effects had been terrible. When I rang the doctor to report this he said that Dad would have to be admitted to hospital if we wanted to try anything else. That felt like a last resort to me. We retired to our corners.

In a way I was relieved. I dreaded seeing Dad drugged into submission. But still his nights were difficult. He wandered his apartment, searching for something he couldn’t name, positive that he should be somewhere, doing something important though he couldn’t for the life of him work out what that was.

He opened drawers, took things out – photographs, old letters, cards from him to Mum, from Mum to him, condolence cards on Mum’s death, business cards, receipts.  He’d put some of these inside the container on his walking frame, along with a roll or two of toilet paper, a couple of serviettes, wads of tissues. Later he’d take things out of there and leave them all over the apartment. Then he’d go searching for the things he’d hidden from himself.

This kept him busy and he didn’t have anything else to do or anywhere else to be, but it also distressed him, and I hated to see that. I decided to see how he went without medication for the moment, with the understanding that he just wasn’t going to sleep at night.

Meanwhile, my father’s dementia worsened. 

I called in to see him one morning. As usual he was so happy to see me. His hazel eyes shone and his face crinkled into a wide, welcoming smile. He kissed me on both cheeks. ‘Oh,’ he exclaimed with delight.

‘Dad,’ I said. ‘Why don’t you get dressed and come into the kitchen and have a cup of tea with me.’

He nodded. He was in the bathroom, bending over the toilet, stark naked, a bar of soap in his hand. ‘I’m doing exactly that,’ he said.

He reached his hands into the toilet and began to wash them.

‘Here, Dad,’ I said. ‘This is the toilet.’ I put the seat down so he might see it more clearly. ‘This is the basin.’ I turned on the tap.

Once he saw the running water he realised that was what he’d been looking for so he shifted his focus, began to wash his hands there.

I kissed him again. ‘Get dressed, Dad,’ I repeated. ‘Come into the kitchen and have a cup of tea with me.’

‘That’s what I’m definitely doing,’ he said. ‘I just need to do this first.’ He held his hands under the tap and began to soap them.

When my mother washed her hands in the toilet I thought it was the saddest thing I’d ever seen. I described it that way in my memoir of her Alzheimer's. That’s not how it felt to me this time. I’m not sure why. Maybe because I’ve seen it before. Maybe because I understand the confusion – water, washing. It makes sense to me.

What really bothered me was his lack of self-consciousness about his nakedness in front of me. This is not about my sensibilities; I wasn't the slightest bit embarrassed. I think he has a beautiful body still – well-built and strong despite being nearly a century old – but my father is an old-fashioned gentleman. A couple of times in years gone by I caught him in his drooping y fronts and he ran for cover, embarrassed. Now here he is going about his business completely naked with no awareness at all.

Slowly he got himself dressed, item by item, and somehow with his clothes he became more himself. He’d buttoned his shirt crookedly but otherwise he looked perfect. ‘Does my hair look alright?’ he asked me.

It did, I reassured him. ‘You look wonderful.’ He smiled. He had no idea he’d been naked in front of his adult daughter.

For now my father and I move forward like this: no dementia medication, gradually worsening confusion and, judging by his swollen ankles, worsening heart failure, taking each day as it comes, still loving each other, still kind to each other, still enjoying each other’s company.

Condensed

 I was thrilled when I heard that the lovely people at Readers Digest wanted to condense Alzheimer's: A Love Story for their Encounters series. I'd heard of Readers Digest, of course, and of their condensed books, but I'd never heard of the Encounters series. The first thing I did was head across to wise old Mrs Google.

This is what she told me:

Encounters are series of condensed books published by Reader's Digest. Each Encounters volume contains four of today's most up-to-date non-fiction stories about real life people and events. The stories have been skilfully edited, illustrated with colour photographs and bound into one striking hardcover book to bring the secrets, wisdom and amazing truths about other people's lives into your home.

The editors at Reader's Digest hand-select the most fascinating of today's unforgettable true stories from Australia, New Zealand and overseas, with memoirs, adventure, true crime, behind-the-headlines, touching stories about nature—and human nature—that will surprise and move you.

Did you read that? 'the most fascinating of today's unforgettable true stories?' That's me! How great is that!

It's an honour that the editors of Readers Digest chose my memoir; the company has a long history and an enormous readership. And I could see how my story would fit their series. But I must admit I was nervous about what condensing would do to my book. What would they leave out? Would what they left make sense?

My copies arrived and I ripped open the box. There was my book pictured at the bottom right of the cover. It was very exciting. But every time I tried to read it I felt sick. Crazy, I know, but it was how I felt. It's often difficult for me to read my own work but this felt worse than usual.

Finally I decided to plunge in by reading the other books in the volume in order, as though I were an ordinary reader. That was easy to do and rewarding because they're fascinating stories about remarkable and brave people. I was proud that my parents' story would be read alongside these others.

It was easy then to read my own work in this new context. Somehow seeing it here set amongst other stories of understated heroism, highlights my father's quiet courage and determination. It made me remember his motto: The difference between the possible and the impossible is the measure of man's will.

None of the people in this volume of Encounters would see themselves as heros. Accidental heros at most. But not everyone reacts the way they did when confronted with difficult realities.

The truth is that heroism is rare. I'm proud of my father and proud of my book and proud to be included in this volume. Thanks, Reader's Digest for selecting me.

Bearing Gifts

It's just over two years since my mother died and I have thought about her every day since.

In the early days I could remember only how she was when she was in the grip of Alzheimer's Disease. Her helplessness and despair as the mists began to swirl and she knew she would soon cease to be counted as a person who mattered and become instead an object of pity - someone of lesser value. Then that blank stare, the rage in her eyes when she became agitated in the late afternoon. 'Go awaaaay!' she'd scream.

It was so painful and exhausting to watch, relieved only by the joy of witnessing my father's devotion to my mother - his sweetheart of 65 years.

These days I remember other times. She was funny, my mother, with a wide smile that revealed one slightly crooked eye tooth. I remember how excited she was to see me, how she refused to allow me to help her in the kitchen when I visited because I was her honoured guest. It's hard to lose that kind of love and especially hard  to lose it to Alzheimer's.

But my mother's disease also brought with it many gifts, one of which was completely unexpected.

When my book, Alzheimer's: a Love Story, was first published, I dreaded hearing readers' stories. My own experience was so raw I thought it would be too painful for me to hear about other people's. But to my surprise I found that I loved it, and I could see too how much it meant to these strangers to share their stories.

Gradually I realised that it's because these journeys we take as we farewell those we love are so lonely and so difficult but also so rich and rewarding that they change us forever. When we tell each other about our journeys, these readers and I, we recognise our fellowship and we feel less alone.

I mention all this now because I am discussing my experience next Sunday at the Well-Being group in the hall at 2pm at St Mark's Anglican Church, 21 Beatty Street, Reservoir (just off Gilbert Road).

Come along if you're free, and join us for what I know will be a moving and enjoyable afternoon.

Dementia Awareness Week

This week is Dementia Awareness Week, though you'd be forgiven for not knowing. There hasn't been a lot of publicity. Dementia is not a very sexy disease.

To be perfectly honest, for me every week is Dementia Awareness Week. As it is I'm sure for anyone who is caring for someone with the disease, or who has lost someone to it.

According to Alzheimer's Australia, in Australia right now 200,000 people have dementia, with new cases diagnosed every day. When you add in all their family members and close friends that's an awful of of people carrying a tremendous burden. Dementia is an insidious but almost invisible plague that has spread into every neighbourhood in the country and around the globe.

There's an excellent article in the New York Times that describes the disease, its symptoms, causes, tests, treatment, prognosis, possible complications and prevention. It begins:

Dementia is a loss of brain function that occurs with certain diseases. Alzheimer's disease is one form of dementia that gradually gets worse over time. It affects memory, thinking, and behavior.

Memory impairment, as well as problems with language, decision-making ability, judgment, and personality, are necessary features for the diagnosis.

That second paragraph describes exactly the arc of my mother's Alzheimer's Disease.

It was an agonising progression for all of us, though lightened by the way in which my father cared for my mother. His loving devotion enabled her to retain some dignity until the end. Although she forgot everything else she never forgot that he was her beloved husband and she his cherished wife. I describe some of this in an article in the current Notebook magazine.

You can read the whole article, uploaded by my clever daughter M, on my website vivienneulman.com

My book, Alzheimer's: A Love Story, contains a full account of the sorrows this disease brought with it, but also of the joy we as a family managed to find in the situation. Although our experience of Alzheimer's was harrowing, and I'd have given anything for it not to have come along, it did bring with it many blessings. Watching my father care for my mother, growing closer as a family, and being able to give my mother a proper farewell were among these.

My advice to anyone who is embarking on this journey is to contact your local Alzheimer's Association, and my advice to governments is to spend more money on Alzheimer's research. The need is urgent.

To those of you currently caring for a loved one with dementia, I wish you strength and courage. You'll need it.

My heart is with you.

Book Signing

Next Sunday afternoon I will be at Petrarch's Bookshop in Launceston from 2pm for a book signing and discussion event. If you're in the neighbourhood come along. I'd love to meet you and answer any questions you may have. I love discussing my book and issues that arise from it with readers. It makes all those lonely hours at my keyboard worthwhile.

To sweeten the event I will be bringing along a batch of my famous home-baked Launch Cookies.

INVITATION

PETRARCH’S BOOKSHOP

ON BEHALF OF

VIVIENNE ULMAN

INVITES YOU TO JOIN HER

WHEN SHE WILL BE SIGNING AND

DISCUSSING HER NEW BOOK...

“ALZHEIMER’S: A LOVE STORY”

IN THIS INSPIRING STORY VIVIENNE RECORDS

HER MOTHERS ALZEIMERS, HER OWN GRIEF AND

THE WAY HER PARENTS’ ENDURING LOVE SUSTAINED THEM.

“OUTSTANDING IS HER PORTRAIT OF HER FATHER. THE STORY OF THIS WONDROUSLY GOOD MAN WILL INSPIRE AND HUMBLE READERS” – RAIMOND GAITA

WE LOOK FORWARD TO YOU JOINING US AT PETRARCH’S AT

2:00p.m. SUNDAY 27^th JUNE.

Phone: (03) 6331 8088 Fax: (03) 6331 5163

89 Brisbane StreetLaunceston Tasmania 7250

Opinion Makers

Last night on the ABC's First Tuesday Book Club, Jason Steger, who is the books editor of The Age and someone whose opinion I greatly respect, highly recommended Alzheimer's:A Love Story.

Below you can watch a very short segment where he calls it 'touching and poignant'.

How excited am I!

Reviewed

My book has been out for nearly three months now and, though I've had some terrific reviews, I'd given up on seeing one in the Melbourne Age.

I was disappointed at first. Alzheimer's: a Love Story is such a Melbourne story, I think. One of the best parts of writing it was learning about a Melbourne that has now vanished. I loved hearing my father's story of running out of petrol during the rationing period soon after the Second World War, and how he had to push the car through the city, up Lonsdale Street where his factory was, to the Russell Street Police Station, where he was given enough petrol to get him home.

And the story of the time before Father's Day one year when the Myer store ran out of Gloweave shirts. Dad parked his car right outside the store's main entrance and he and Baillieu Myer themselves carried the cartons of shirts up to the sales floor.

There were many more stories that brought the past of this city alive.

Anyway, I told myself I didn't care that my hometown newspaper wasn't interested in reviewing my book. I've done very well, I told myself. Don't be greedy.

Then on Saturday there it was: a half page review accompanied by a coloured photograph of me. To be honest, my first response was not excitement but anxiety: surely in such along review there was bound to be at least one negative comment. And I knew that no matter how many nice things were said it was the criticism that would stick in my mind and whisper in my ear at night.

I was in Melbourne as it happened the morning the review came out. As soon as I had the paper in my hot little hand I rang Farmdoc to read the review to him. I approached each sentence with trepidation: uh oh, here it comes.

In the end I spoiled the moment for myself with unnecessary anxiety because there was not one negative word. On the contrary, the review compares me with Joan Didion (blush) and ends by saying 'It is eloquently written, beautifully observed and painfully honest, yet never sentimental or self-indulgent.' Yay!

If you click on the photo above you can enlarge it and read the review for yourself. Otherwise, in the next few days my clever daughter Meg will post it on my website and you can read it there, along with all the other kind things people have said about me and my book. Thanks for the photo, Farmdoc.

Ten, Nine, Eight...

How quickly this week has sped by compared with how slowly time passed while I was counting down the hours until my launch with equal amounts of excitement and nervousness. Would anyone come? Would too many people come? If they came would they think it had been worthwhile to trek across town in peak hour traffic in all that heat? What part of the book should I read? What sort of speech should I give?

At first I was determined not to cry and not to upset my dad. But that made it impossible to find an extract to read, and everything I thought of to say sounded superficial.

Nicola introduces the evening.

And then, a few days before the launch, the words of that song, 'It's my party' began to play in my head. It's so weird how that happens, that you realise you've been humming a song that is absolutely appropriate to whatever you've been thinking about, as though a DJ in your head is rummaging through all your old records for a soundtrack.

'It's my party and I'll cry if I want to. You would cry too if it happened to you.' And it was true. What had happened to my family was sad. And you would cry too if it happened to you. I decided that if I cried, I cried. That left me free to say whatever I wanted to.

My speech

Lucky I'd made that decision, because I was crying before I even began to speak. I hadn't counted on being so moved by the words spoken by Nicola my editor, who emceed the proceedings and Clare who launched the book so beautifully.

Me, Clare, Emma and Nicola.

What touched me most? That Emma had arranged everything so perfectly, and even offered to pick me up. That so many people made such an effort to come and then said such lovely things. Some people had read the book already and wanted to tell me how much it had touched them. Others bought several copies, confident that they'd love it. Friends, relations, fellow writers, acquaintances I haven't seen in years - Readings was crowded.

I felt overwhelmed by gratitude. My daughter K had baked delicious chocolate chip cookies; my daughter M brought me fresh herbs and vegetables from her garden; my daughter E gave me wonderful advice, her skirt to wear, a card that made me cry, and a keepcup for when she buys me takeaway coffee on the weekend; and my daughter A rang, texted and emailed from San Francisco where she lives.

The author signs copies.

Readings sold out of books and all the cookies went. All in all a very successful evening.

In The Shops

What does an author do in the afternoon when she should be working on her novel? Well, if it's the day her book first hits the shelves, she hits the shops in pursuit of it. These photos aren't wonderful, but she was over excited and the only camera she had was the one on her phone.

This photo was taken in Hill of Content bookshop in Bourke Street, Melbourne.

And so was this one


Unfortunately, when she got to Reader's Feast, at the corner of Bourke and Swanston Streets, there was a man trying to look at Bob Ellis's new book. She tried to be subtle - really she did - but he was engrossed and he was in her way. So, it was either push him or ask him nicely to move.

He was very nice in the end, and no readers had to be harmed in the making of this blog. Lucky for him, is all I can say.

Fathers

There's an article in the September issue of The Monthly magazine by Drusilla Modjeska called 'The Death of The Good Father', which discusses Granta magazine's issue number 104: Fathers.

I was particularly interested in the piece by Siri Hustvedt, 'My Father Myself'. In it, Siri describes sending her parents a copy of her third novel, What I Loved. Usually her father didn't ring her; she and her mother spoke on the phone and then her mother put her father on. This time, however, her father rang. He loved her novel, he told her. She'd attempted something difficult and pulled it off.

Hustvedt sobbed, she said, at receiving this recognition from her father. I sobbed too when I read this story. I cried for her and I cried for myself because this was never going to happen to me.

Except that this morning it did.

I have been so anxious about showing my father my book. He knew I'd received my author copies and he kept asking when he could see one. As it happened he was in Perth visiting family the day I took delivery, and then the day he returned I went to Tasmania. So last Monday was the day.

Why was I so nervous? Well, the book is scrupulously honest about my mother's condition. It describes my mother (by which I mean I describe her) at her very worst. I was sure my father would see this as a betrayal: that I was humiliating an unprotected woman.

This wasn't my intention. In fact I wanted to honour my mother, but to do that I needed to tell the truth, unprettified and unembellished. I didn't think my father in his grief and loyalty would understand that.

On Monday night we were all at Dad's for a family dinner, and when I left I told him I'd put his copy of the book on his bed. By Tuesday morning he'd read almost half. 'It's very good,' he said, but he hadn't finished and I thought he sounded a bit uncertain.

This morning he rang again. His voice was hoarse from crying. He'd finished my memoir, he said, and he loved it. He thought it was beautiful. His only criticism was that I'd given him too much credit and been unnecessarily harsh on myself. I could tell he was proud of me, though he didn't say those words. We spoke about the book for nearly an hour.

I didn't cry. I smiled all day, though I'm crying now as I write this. One of the unasked-for blessings Alzheimer's bestowed on me is a closeness with my father that we never had before. As with many other daughters, and perhaps like Siri Hustvedt, my relationship was with my mother and through her with my father.

The epigraph for Siri Hustvedt's latest novel, The Sorrows of an American, is from the poet Rumi: 'Keep looking at the bandaged place. That's where the light enters you.' That applies to my book too, I think.

With A Little Help From My Friends

Well, here they are - ten author copies of my book. I picked them up from the lovely people at Scribe yesterday. I was so excited I couldn't stop babbling, but I guess they must be used to that behaviour and they all acted as though I was perfectly normal.

Apparently it will take from now until late October for the distributor to get the books out to all the shops so the rest of you will have to wait for your copies. The launch is November 12th, but I think the book will be for sale from October 26th.

It looks beautiful. I love the cover - so moody and evocative - and I think the designer has done a wonderful job with the inside of the book too. Not to mention Nicola, my painstaking editor, who, despite her gentle manner, insisted on polishing my prose until now it fairly shines on the page.

What an amazing experience this has been. I delivered the manuscript at the end of April and since then it's undergone meticulous editing and fine tuning to make sure it's the best version it can possibly be. And now here it is. I feel quite humble: I'm going to take all the credit, but I didn't do it alone.

Advance Reading Copy

The book is here. When Farmdoc and I walked down to the post office this afternoon, there was a padded bag from Scribe, addressed to me, waiting in the box.

I had decided that I'd wait until I sat somewhere before I opened it. I wanted to relish the unveiling. Instead, as we walked, I ripped the bag open, desperate to see what it looked like.

Beautiful. Just beautiful.

Raimond Gaita's full endorsement is on the back, and on the front, his lovely words, 'A heartrendingly beautiful book.' The gorgeous front cover design wraps around the spine, and then onto the back. I think Marc Martin, the designer, has done an incredible job. You should check out his website to see some of his other work.

There was also a lovely note from my editor, Nicola, explaining that this is only the Advance Reading Copy and not the final book so there'll be mistakes.

Too exciting really.

We walked on to the Mole Creek Visitor Information Centre, which now houses The Superb Herb and an espresso machine. The Laurel Berry where I wrote so much of this book, is closed until September, so it's a slightly longer walk from our place for a cup of coffee. On one of the two glass tables, I set myself up in earnest to savour the moment while Farmdoc read his mail.

And what's my reaction? How do I feel? Well, my strongest urge is to treat this volume as I would any other new book: scrutinize the cover, read the blurb on the back, leaf through to the acknowledgements to see if I know any of the people thanked, and then turn to page one to begin reading: The Journey.

I read the words:

'It has been said that all stories begin in one of two ways: a stranger comes to town, or a person sets out on a journey.'

After all the hours that I spent writing, reading, revising, editing and then proofreading this book, what I most want to do now is to read it as a reader and not as the writer.

But also to admire it as a beautiful object and to decide which page I'll sign for my readers.

I guess how I feel is that I have been on a journey writing this book that describes my mother's journey with Alzheimer's. And now the book will have a life and a journey of her own. All I can do is wish her Godspeed.

Your Humble Servant

My editor asked writer, moral philosopher and educator, Raimond Gaita, who is the author of amongst other works, the highly acclaimed memoir, Romulus my Father (now a terrific film starring Eric Bana) if he would endorse my book.

He said he would read it, which thrilled me because I so admire him. Then, after he'd read it, he agreed to endorse it.

This week he sent in his endorsement. This is what he wrote:

‘Vivienne Ulman has written a heartrendingly beautiful book, moving and sometimes unsettling. She writes with a truthful love that struggles for lucidity about what it can mean to suffer from Alzheimer's disease, to love and, in more than one sense, to lose someone who suffers from it. Outstanding is her portrait of her father who cared for his wife with a love that was both romantic and saintly. The story of this wondrously good man will inspire and humble readers of all kinds and ages for years to come.’

I asked my daughter M, who is an experienced blogger, whether I could blog this, if it wasn't too vain of me, and she said I could, as long as I was humble about it.

I don't actually know if I feel humble. I am enormously proud and thrilled and delighted to have a man I respect so greatly say such amazing things about my writing and about my father, but I'm not sure if I feel humble. I decided to blog it anyway. I was too excited not to share.

By Its Cover

Here, finally, is the cover of my book, Alzheimer's: a love story.

I think it's beautiful. It's soft and dream-like and quite striking. The designer has captured visually my mother gradually losing her language and her hold on the world. The design conjures up for me an image of a ship on mysterious and treacherous seas where there are hidden rocks and other unforeseen dangers.

Today I finished the last of the editing. Now the manuscript can go to typesetting, so when I see the book next it will be to proofread. All very exciting. It's in the Scribe catalogue now too.

Yeeha!

Last Friday afternoon I printed out the chapter of my memoir that I was working on and took it with me down to the Laurel Berry, Mole Creek, which is where I’ve written so much of this book. There, while I shared an iced coffee with Farmdoc (they know exactly how we like it) I revised the chapter. And that was it for the first draft. Done! Finished!

On the way home we picked blackberries and a few apples from a street tree and fed our neighbours’ dogs because they were away.

In my inbox, when I checked, was a message from my editor, asking me when I might be ready to deliver the manuscript. A nice coincidence.

Over the weekend I read through the manuscript and made some changes. One or two chapters stood out as needing a fair bit of tightening but I decided to leave those for my workshopping crew, to give them something to do.

I knew there was still a long way to go with this book and a lot of hard work, but I felt freer then than I had in a long time so I celebrated by making blackberry and apple jam.

The wood for the cooking stove came from a blackwood that fell across the fence into our home paddock a few years ago; it’s dry now and caught quickly.

I couldn’t resist giving this batch of jam a special label.

Alzheimer's: A Love Story

I’ve sold my book about my mother's Alzheimer's. (This is not a picture of my mother, but of Alois Alzheimer who discovered the disease.) The book's working title is Alzheimer's: A Love Story.

I originally thought I’d wait until I finished the first draft before sending it off to a publisher, but I changed my mind. I began to feel that I needed editorial assistance with the structure, and without that I thought I’d waste a lot of time.

I submitted the first ten chapters to Scribe, the first publisher on my list, and three days later they offered me a contract.

They called it ‘impressive and moving’. Yippee!

It makes me nervous. This book that thus far has belonged only to me now has to answer to the outside world. But I’m thrilled and excited too, and I look forward to working on it with an editor. And of course to seeing it in the hands of readers.