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Stolen Memories, Julia Roscoe

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Julia Grace Roscoe shares a very personal account of what it’s like to lose someone to Alzheimer’s disease.

We’re just getting old. That’s what my Nan used to say. She denied for so long that anything was wrong with my Pop. He was forgetting things. Things like the day, the month, and the year. Sometimes he would forget what he was doing. Sometimes he would be in the shower and he would forget actually getting in the shower. He would forget where the toilet in his own home was. Once he even forgot who I was. Still, Nan insisted they were just getting old. But instead of old meaning wrinkles and grey hair, for Pop, it meant becoming dependent on someone to look after him. And the worst part, it meant losing his memories.

Alzheimer’s disease is a disease of the brain, which gradually impairs higher brain functions such as memory, thinking and personality. It is the most common form of Dementia, and affects one in 25 Australians over the age of 60. There is no cure.

In the early stages of Alzheimer’s, symptoms may be too subtle to notice. Depending on the affected areas of the brain, early symptoms include memory lapses, problems finding the right word for everyday objects, difficulties making decisions, confusion and personality changes.

 

I never wanted to leave Brisbane. Growing up, my sister and I were very close to Nan and Pop. When we moved to Sydney, we would fly up to visit them every school holidays. I’ve got a picture on my dressing table of my sister and I with Pop. He is holding both of us over his shoulders and we’re all laughing. My sister and I have our faces huddled in Pop’s neck. I’m five or six in the photo.

 

Pop’s initial diagnosis was pretty vague, as with most cases of Alzheimer’s. Diagnosis is about 90 per cent accurate, but there is no definitive test. The only way to confirm the presence of the disease is with a post mortem on the brain, which for an Alzheimer’s patient shows damaged cells called ‘tangles’ and ‘amyloid plaques’ in the spaces between the cells. The plaques are made up of a protein called ‘A-beta’. The build up of protein is what is thought to cause the damage as it basically rusts the brain. Research has shown that the protein converts oxygen to hydrogen peroxide, which bleaches and corrodes the parts of the brain linked to memory and reasoning. In Alzheimer’s disease, the brain cells cannot connect and ‘talk’ to each other. Ultimately, the connectors disappear entirely in the part of the brain where thinking occurs. Drugs aimed at inhibiting the production and toxic effects of the A-beta protein are in development, but it will be some time before they are widely available.

Pop was first diagnosed in June 2009. He was 80 years old. The doctor’s report read: ‘The history is basically one of gradual onset and gradual decline of short-term memory over about three years or so. I note the CT head, which shows considerable deep white matter ischemia* and normal full blood count. I have talked to John and his family about the diagnosis of Mixed Alzheimer’s & Vascular Dementia. He is interested in trialling Cholinesterase Inhibitor so I have prescribed Reminyl.’

We were told that Reminyl might help to slow down the changes in his memory but it would not cure him. The doctor asked if he wanted to trial it anyway, and he agreed, though he had no idea what he was agreeing to. We were willing to try anything that might help, so he was put on a three-month trial. Reminyl is used to treat mild to moderately severe cases of Alzheimer’s. It is supposed to increase the amount of Acetylcholine, a substance which transmits messages between brain cells, and which patients lack. The aim is to help improve or stabilise the symptoms and perhaps even slow the progress of the disease. It didn’t help Pop. The doctor didn’t think it would. The drug comes with some awful side effects, and Pop experienced nausea, vomiting, diarrhoea, muscle cramps, tingling in his hands and feet and he became more and more depressed. I was staying with Nan and Pop one night during the Reminyl trial. When I said goodnight to him he hugged me and said goodbye. That was the only time I ever saw him cry. He had tears welling in his eyes as he said,

‘I don’t want to wake up in the morning.’

He looked scared. His dressing gown was drowning his frail frame, and I watched him, hunched over as he shuffled off down the hallway until I couldn’t see him in the darkness anymore.

 

When the doctor told him he had Alzheimer’s she asked if he knew what that meant. He said he did, but we knew he didn’t. When we left the clinic he couldn’t even remember why we were there. He was also diagnosed with Vascular Dementia (VD), which occurs due to problems in the supply of blood to the brain. It is the second most common form of Dementia after Alzheimer’s. Symptoms between the two are difficult to differentiate because a large percentage of people with Alzheimer’s also have VD. Mixed Alzheimer’s is a condition in which abnormalities characteristic of more than one type of Dementia occur simultaneously. In Pop’s case, the abnormal protein deposits on the brain associated with Alzheimer’s coexist with blood vessel problems associated with VD. The main difference between the two is the progress of the disease. Alzheimer’s patients tend to experience a more consistent rate of decline in all cognitive abilities. Pop’s symptoms progressed quickly, consistent with VD. The most common cause of VD is a stroke, which is a type of vascular disease. Often patients can experience a number of small strokes, which may go unnoticed. This may have been the case with Pop. The doctor thinks it’s more likely to be related to his past as a boxer, which is now known to be a risk factor due to the trauma inflicted on the brain by blows to the head.

 

About a month after the doctor’s visit he started asking for his mother all the time. He stopped recognising himself in photos taken in the last 30 years. In Alzheimer’s disease, short-term memory storage is damaged first. Humans have two types of memories, short-term and long-term. Short-term memory is programmed in a part of the brain called the temporal lobe, while long-term memory is stored throughout extensive nerve cell networks in the temporal and parietal lobes.

Pop would ask for Nan all the time too, but he got agitated because the woman he remembered was 40. Nan was 80. He was also becoming delusional; he kept saying that Nan was an imposter. He said there was a strange man sleeping in his bed. Nan would just shake her head and tell him to stop being daft. He had good days, and bad, but now the bad started to be more often than the good. He needed help choosing clothes appropriate for the weather and time of day. Sometimes he would put his pyjamas over his jeans, or socks over his shoes with his shoes on the wrong feet. He couldn’t remember where he lived, or where he went to school. He could still distinguish between familiar and unfamiliar faces, but he was increasingly having trouble with our names.

I don’t know how Nan did it. He was almost totally dependent on her at this stage; she was looking after him full-time. He couldn’t even go the toilet without her help anymore. I remember once when I was there he started shouting at her, saying he wanted to be with Jeanie. He was waving his cane stick at her and shaking his head. It might have been funny, except for the look on his face. It was screwed up and he kept gasping. He couldn’t work out what was going on. For the first time I noticed the deep lines etched on his face. The lines of a life lived. His grey wispy hair was thinning, and so was his face. It was drawn and he had deep purple colouring around his eyes.
‘I’m Jeanie, I’ve changed my hairdo,’ Nan said to him and she gave him a lolly.
It was like watching a mother and her son, not a wife and husband.

‘Come on dear, I’ll make you a cup of tea.’ This scene played out fifteen times that day.

Before Nan could get any help, she had to qualify for respite from the Australian Government Department of Health and Ageing. Respite Care provides a chance for both the carer and person being cared for to take a break. Respite can be in the home with care ranging from a few hours a week to overnight care, in a Day Care Centre which provides full or half day care, or, in a residential aged care home for two or three weeks. Nan desperately needed help, though at first she didn’t want any. But she couldn’t leave him alone anymore, and being there with him all the time was taking its toll on her. The last time she left him on his own he urinated on the kitchen floor because he couldn’t remember where the toilet was.

To qualify for respite, someone from the National Respite for Carers Program came to assess the situation and determine whether or not Nan needed help. Mum was there on that morning and she sat with Pop and he read to her.

‘He read the same thing over and over again. He read the same sentence a dozen times, and then moved onto the next paragraph and did the same thing. He never turned the page. He had no idea what he was reading, but every now and then he would throw in the grandchildren’s names,’ she told me.

During the test, the nurse asked Pop his age, birthday, where he was living – he had no idea. He thought he was 40, and had only just moved to Australia. They moved here from England in 1961. He couldn’t copy a picture of a cube. He tried over and over again but couldn’t get it. He was a builder by trade; he could easily have drawn a cube. He couldn’t name everyday items shown to him, like an apple. He couldn’t remember how to spell, not even his own name, he wrote ‘Jhon’. But what he could still do blew the nurse away. When asked to count backwards from 100 in multiples of seven, he rattled the numbers off correctly and without giving it so much as a second thought.

 

Mum and dad had already been researching nursing homes for Alzheimer’s patients, because we all knew what was inevitable. High-care nursing homes are for people who need 24 hour nursing care. This may be because they are physically unable to move around and care for themselves, or because they have a severe Dementia-type illness or other behavioural problems. Residents in high-level care receive specified care and services including assistance with daily living. A year or so earlier Nan and Pop had downsized, and moved into a smaller home across the road from the hospital. Pop was always in the hospital for some sort of check up – he had chronic back and knee pain – so it made sense to move there. The hospital also had a high-care nursing home attached to it.

 

On Boxing Day 2009, just six months after the initial diagnosis, we were left with no choice but to put Pop into the home. While some families celebrated the holidays, lazing about in the wringing heat, with bellies full of left over Christmas turkey, Pop had chased Nan around the house with his walking stick, threatening to hit her if she didn’t find his real wife. Mum and dad found Nan hiding under her bed, terrified. Pop kept demanding to know who she was and what she wanted. He was too far gone now, there was nothing else we could do. He was on the edge of an abyss, and he wasn’t coming back.

 

The home is a large rectangular building. Inside is a maze of rooms, sectioned depending on the level of care needed by the patients. The high ceilings and wide corridors are painted stark white, and the smell of disinfectant lingers. The bedrooms are all the same, a bed in the middle, a desk on one side, and an ensuite. We tried to make it feel like home for Pop. We put photos of the family around the room and on the desk. The younger grandchildren drew pictures that we hung on the wall. Nan brought in blankets and towels, books and music. But he knew it wasn’t home, and he kept asking when we would take him home.

I used to go and sit with him for hours. I would read to him and feed him. It was like feeding a baby. He would dribble and I had to wipe his face with his bib. Sometimes we would go out and sit in the garden. We would bring his dog Princess over too. He loved her, and she adored him. She would sit beside him for hours. The garden wasn’t much of a garden, the trees were lean and straggly and there were some sad looking bush shrubs lining the fence. But the grass was always perfectly manicured, and was a luscious shade of dark green.

Aphasia is the inability to communicate effectively, and occurs in all Alzheimer’s patients eventually. Pop couldn’t hold a conversation anymore, so he would sometimes just mumble or grunt. If I asked him something he would nod, but I don’t think he even understood what I was saying. Sometimes he wouldn’t say anything at all. But he would smile at me. I used to wonder if he even knew who I was.

 

It’s been just over three years since his initial diagnosis. The Alzheimer’s Association says that most people with the disease die within four to six years of diagnosis. However the disease can last up to 20 years. Pop is now bed-ridden and sleeps most of the time. He cannot bathe himself; he cannot even turn in his bed. He is into the late stages of the disease, slipping in and out of death. These stages can last up to several years. It has him in its grips and there is nothing we can do except make sure he is comfortable. He no longer recognises any of us. He doesn’t even recognise himself. He cannot chew or swallow. He is incontinent and has had several urinary tract infections. His skin is a deep shade of purple, he is frail and his skin bruises so easily that they only bathe him once or twice a week. There is no dignity in Alzheimer’s disease.

Pneumonia is often the cause of death in patients. Difficulty swallowing often causes people with Alzheimer’s to inhale food or liquid into their airways and lungs, which can lead to pneumonia. The doctors say Pop has liquid on his lungs. I have an aunt who is a nurse in a high-care home. She said pneumonia is the best way to go, because what is to come is much worse as the body starts shutting down. I feel guilty for thinking she is right, but grieving for someone with Alzheimer’s is a long process. My sister has refused to see him since he has been in the home. She says she doesn’t want to remember him that way. I haven’t seen him in nearly twelve months. I don’t know if I’ll see him again. Mum asked me the other day how will I remember him? I want to think that I won’t remember him like this, that I’ll remember all the good things. But I’m afraid the trauma of the disease may have tainted my memory. I suppose that’s the hardest thing – watching him every day just go, so that now he’s nothing like the Pop I knew. The chaos of the disease has created someone who we don’t even know anymore, and worse, someone who doesn’t know who we are.

 

 

* Brain ischemia is insufficient blood flow to the brain. Chronic ischemia of the brain may result in a form of Dementia called Vascular Dementia.

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My Father’s Eyes, Merran Winchester

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Look at your eyes. They are small,
But they see enormous things.
Rumi, ‘The Book of Love’

‘Is that your gun?’

‘Yeah, it’s for… just in case.’ My dad stands with a group of men, all carrying AK47’s. ‘Haven’t you seen these photos?’ he asks me.

‘I don’t think so.’

I wonder if that’s his fault or mine. As a Petroleum Engineer my dad spent much of my childhood in remote and often dangerous parts of the world, returning to our family home periodically with artefacts and stories. A lot of conversations took place over distorted telephone lines from our suburban Canberra home to Nigeria, Papua New Guinea, or Uzbekistan. He was a walking atlas of strange and interesting facts. I haven’t seen most of the photos or heard half of the stories, but today he’s sitting in my Bondi flat, crunching on salted crisps, while he flicks through photos of his last visit to Afghanistan, three years ago.

It took a book launch to pique my interest in Afghanistan again. Somewhere along the line I’d switched off. I mostly avoided articles in the newspapers with headlines about the ‘War on Terror’, soldiers dying, death and destruction, blah, blah, blah, it’s so much doom and gloom, so I usually turned the pages to something lighter like horoscopes or entertainment. Mac Serge Tucker launched his book Fighter Pilot during a cruise around Sydney Harbour. My dad had been invited along and asked me to join him. I didn’t really know why he was going, but we don’t spend much time together and ‘who knows, the glitterati might be there,’ he’d said in his much-faded ‘Souf-end’ English accent. Plus it was a cruise with free champagne and canapés. On reflection, by the ‘glitterati’ I guess he meant the guy dressed up like Elvis or the Air Force men in Hawaiian shirts with cowboy spurs on their boots.
After we’d been cruising for a while the author stood up to get on with the formalities of the evening.

‘I’d love to write a book about what Afghanistan is really like, but no-one would read it, so I wrote this one instead.’ We all laughed appropriately, knowing it was probably true. The book is his story; an ex-RAAF, fighter pilots ‘mis-adventures’ in war zones. With the mention of Afghanistan the men around me seemed to shift and I found myself looking at them, wondering what memories and associations the country held for them as Air Force men. Then the author introduced my dad. He was there to run the auction and collect donations for Mahboba’s Promise, a charity looking after orphans and widows in Afghanistan. He’d done a few different trips to Afghanistan in the last ten years and he’d also lost his dad at the age of three in the Second World War. I guess that’s what had taken him to work with the charity. He walked across to Serge, took the microphone and held up a framed photo of two young Afghan girls: messed up hair, dusty skin, big smiles, staring straight at the camera. It was a beautiful yet simple photo.

‘I’m a hard-nosed oil man and this photo brings a tear to my eye.’

I looked around the room to gauge other people’s reactions. I was shocked. It seemed to be such a revealing comment. I’d never heard him speak that way and certainly not in a room full of men. It was strange to hear him describe himself as hard-nosed. I guess he was, but he’d never said that before. I’ve probably spent a lot of time trying to figure him out. He is a sporadic man- here one minute, gone the next and then arriving again, like a hurricane. Mostly hugs come with a slap on the back or a pat on the head. We’ve tried to talk in the past, with varying levels of success and there have been times when I’ve been surprised and moved by his response. But, there’s also been a lot of conversations that have escalated into arguments never to be resolved. So, mostly we talk about politics instead of personal issues and even though we have different political views, somehow that keeps the peace. Anyway, he remains a mystery to me, a lot of the time.
‘So who’s going to open the bidding?’

So here we are, in Bondi, crunching on crisps. His photos show the landscape of Afghanistan, hostile and desolate. The earth is a mass of ripples and crinkles, across huge mountain ranges. There is the desert, broken buildings, and rusted Russian tanks littering the streets. Then there are photos with bright, vivid colours, of mountain streams, huge gorges, and snow-capped mountains. The scenes are picturesque and haunting. The cliffs and passes remind me of Lord of the Rings. There is such contrast between the landscapes. This place is at once diverse, desolate, lush, hostile, and home to many different tribes.

‘These are the Hindu Kush mountain ranges. They connect to the Himalayas.’ The peaks reach up to 7000 metres. They run for 900km between central Afghanistan and northern Pakistan and span 250km of deep caverns, passes and gorges. Later I learn that Hindu Kush literally means ‘to kill the Hindu’. They were named after the devastating journey Indian slaves used to have to take.

‘How safe is it?’ I ask him.
‘It’s not.’

It may seem like a stupid question and of course I’ve read the travel warnings and seen the news, but I’m not looking for an official statement. I want to know what it’s really like.

As a child, every now and then, on the way to school or sport or getting dinner, mum would say ‘When I was in Afghanistan….’ and then lead into some exotic story. Our house held trinkets, books and carpets from the Middle East, veiling the place in mystery and romance like an old Hollywood film. She was a young woman on the ‘hippy-trail’, who travelled Afghanistan in the 1960’s before the Russian invasion. She was inspired by novels like James A Michener’s Caravans and Herbert Muller’s The Loom of History. I ask my mum about her memories of Afghanistan.

‘We’d read all about Afghanistan and the area and we were coming overland from London. We took trains across the Persian desert and then a local bus across the border. Mosques were aqua and turquoise; spices were interesting, the markets, dusty roads, people laden up carrying things or with horses and carts in the streets. The people were very friendly. We were a bit of a novelty I think,’ she smiles to herself.

‘What was it like travelling as a woman?’

‘We never had any trouble. We wore long sleeves and covered up, to not be offensive, as you would anywhere. You have to remember, as a woman, at that time, you weren’t really free here or anywhere else. But the dynamics were very different to what they are today.’

Afghanistan is wild. Its environment is bold and dangerous. The need to map and define the country’s borders came with the British occupation of India (now Pakistan) and Afghanistan in 1839. In the last 100 years, Afghanistan has been occupied by Britain, Russia and now the US and Allied forces. It shares its borders with six countries; Tajikistan, Pakistan, China, Iran, Turkmenistan and Uzbekistan. Its geographical location has made it a strategic point for many invasions and occupations from the Mongols in the thirteenth century, through to the present. It seems that if you were a military power playing a game of chess, Afghanistan would be the board and the game would be alliances, resources, religion and power.

‘If you want to understand Afghanistan you have to research it beyond 100 years ago, when it was called Ariana and Khorsan,’ Sidiq tells me. He is an Afghan-Australian who came here as a refugee with his family in 1991. We are sitting in the small Sydney-based office of Mahboba’s Promise. The charity was set up to look after some of the 60,000 orphaned children and single mothers in Kabul and the surrounding region.

‘We have many tribes and languages in Afghanistan. We have many great scientists, philosophers, and writers, but you don’t hear about these things on the news. It doesn’t make a good story.’

I can’t tell how old Sidiq is. He is a handsome man with dark skin and flecks of grey in his hair and beard. His gentle eyes match his countenance. He still speaks with a heavy accent.

‘Australia is one of the best countries in the world, but you cannot compare Afghanistan and Australia. Afghanistan has been fighting for over 40 years. A lot of things have changed. A lot of people lost their rights. It is very different now’.

Sidiq spends half his time in Australia and half in Afghanistan. The charity runs various services and orphanages. They recently acquired a big building they could use as an orphanage. The site was an old government building and also used as a centre for torture by the Taliban. On the walls in the basement, prisoners recorded some of their experiences. Simple stick figure drawings depicted scenes of torture, electrocution, beatings and sexual abuse. There is no doubt that most of the people brought there would never have returned home. This building holds the memory of those atrocious crimes and abuses in its walls. And yet, what could the charity do but paint over the walls and try to start again? Now they’ve turned it into an orphanage called Hope House where they can shelter and educate some of the homeless children who have lost their parents in war.

‘The people look very harsh from the outside,’ Sidiq tells me, ‘but it is just their lives. When I take people there, they meet a man with a long beard and not a happy face. His face shows the hardship he’s had for so long – but inside he is full of love and talking, he has so much knowledge. These two countries are very different, but their humanity is the same. People develop differently at different parts of the earth, but human beings are the same all over. We all have goodness and badness.’

With racial and religious tension spilling onto the streets in Sydney and across the world I awkwardly ask Sidiq, ‘What does it mean to you to be a Muslim?’

‘It is about inner peace; submitting to God and inner-peace.’

I wonder how Sidiq adapts to the changes of lifestyle between the two countries. I wonder what he has seen, what he has to deal with.

‘Do you ever feel you are in danger there? Are you scared to go back?’

‘I never used to be scared, but now I am scared to leave my family. I wonder if someone will get some idea about the ‘Afghan’ family down the road and the screen door will be unlocked and someone will go in and do something to my wife and my kids…’

‘You’re scared to leave them here, in Sydney?’ Is it possible he really feels that level of hostility in Sydney?

‘Yes.’

Back in my flat, Dad and I explore the world eating crisps and looking at photos. ‘Look at this one.’ He flicks to the next photo of a group of boys in the street. ‘We were heading west to check out some old oil wells and we stopped at this little café by the side of the road. It was a café but they didn’t have anything there. No wood, no fire, no food. They sent the kids out to get something to light the fire. They came back with a handful of weeds they’d collected from the ground, which was used to boil the water. We asked them why the kids weren’t in school. The men said they couldn’t afford it. They didn’t have enough money and they needed the kids to work. They go out and sell chewing gum and things. God knows who buys the chewing gum; no-one has any money.’ In the background a group of girls peer from a doorway, huddled together and barely visible.

I look at my dad as he tells the story. It took me until I was about twenty to realise who I’d inherited my green eyes from. I’d thought it must have been some long lost aunt or something, but it was from my dad. He has green eyes too. I guess I never really noticed. I’d never stopped and looked into his eyes. I get up to get a book off the shelf.

‘Have you ever read Rumi?’ I ask him.

‘No. I’ve never heard of him.’

‘He was a thirteenth century Persian poet and mystic from Afghanistan. This is my favourite book of poetry.’

He flicks through the roughly cut pages.

You have said what you are.
I am what I am.
Your actions in my head,
My head here in my hands
With something circling inside.
I have no name
For what circles so perfectly.”
Rumi, ‘The Book of Love’

I never would have thought Afghanistan could teach me more about my father. His life has spanned over 70 years; a collection of diverse and rich experiences. Though I’ve missed him, he’s always brought home parts of the world for me, igniting my curiosity and imagination. There are many things I may never know or understand, but perhaps the differences between people aren’t so great after all. Perhaps we just need to take a moment to try and see through someone else’s eyes and to share our differences.

 

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