The cruel disease that has taken my young mother's mind
My mother's grey-blue eyes are beautiful but they are blank. They stare right through me, look past me, failing to respond. For the past two years, my 70-year-old mother hasn't known me. Lying in a chair in a Napier resthome, she is spoon-fed her meals by caregivers who are the human equivalent of angels. Her nappy is changed. She is washed and showered, and tucked into bed at night.
If Mum could see herself, I know what she would say - she should shut her glassy, blank eyes one night and sleep forever.
Almost nine years ago, my mother was diagnosed with Alzheimers. She was just 62 - 15 years older than I am now - an age when she and Dad should have been relaxing and reaping the fruits of decades of hard work raising three daughters and saving for their retirement.
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Alzheimers is a cruel disease with no cure, one that causes the brain to slowly shut down and to die. With a growing number of sufferers filling beds in dementia units here and around the world, it has been so much more tragic watching the disease strike a woman as young as my mother. When her new home became a retirement village five years ago, Mum's shiny, unlined face stood out among the wrinkled ones, her soft brown curls amid a sea of grey heads. We have no idea why Mum was unlucky enough to get this condition as there is no family history. She lived a healthy life, continuing to teach classrooms as a relief teacher right up to her diagnosis.
I first noticed something was horribly wrong on February 1, 2007, when Mum came to Wellington for my daughter's fourth birthday. Throwing ingredients into a bowl, Mum popped Bianca's birthday cake into the oven. As the tin came steaming out of the oven, the chocolate cake was noticeably flat. Mum thought she had followed the recipe, but she had left out some key ingredients.
Her healthy, size 12 frame had shrunken down to 47 kilograms. She was thin and bird-like, her arms dangling like noodles and her eyes dashing around anxiously. On that trip to Wellington, she lay on the back seat of the car, worried that Dad might crash.
We had no idea why our mother - the rock of our family - had been struck by sudden anxiety, and why she had lost so much weight. We suspected a physical illness such as cancer. We didn't comprehend Alzheimers: that was a disease that struck old people, not my 62-year-old mother who was still teaching classrooms of primary school children, and who could sit for hours at the piano, playing one tune after another.
When Dad took her to her GP for tests, she was referred to a specialist, who organised a brain scan. On the day of her diagnosis in September 2007, we struggled to get hold of our parents as they digested the news. Mum had never wanted to worry us. I was wrapped up in parenting three young daughters - my youngest, Mia, was just two - and I was working part-time as a journalist. My youngest sister, Fee, was raising three young children in Denver. It was only my middle sister, Jane, who managed to see Mum regularly when she visited Hawkes Bay each month for work. Along with Dad, Jane was closest to watch Mum's steady decline.
AS TIME MOVES ON
Why do I write this now? Because if I could turn back time, I would have dropped everything and spent every possible moment with Mum, before her brain began to shrink so much that she would no longer know us. We didn't realise the clock was ticking by the day, although we were warned. Her specialist, Dr Ian Hosford, told us that Mum could live for about eight years, before the disease would take her. We tried to bury our heads in the sand, to hope that the drugs she was prescribed - that made her vomit and gave her vicious diarrhoea - would possibly work.
Dad's diary entries are illuminating, both for the way they reveal the rapid decline of Mum's mental state, along with the love and care he showed his life partner as her mind began to shut down. There are hints of his frustration, too - normal for any person whose partner is suddenly unable to do many of the tasks she used to breeze through.
Two months after Mum's diagnosis, she spent the day relief teaching. On December 13 2007, Dad wrote in his diary that Mum was feeling nauseous, and forgetting how to do basic daily activities such as flushing the toilet. Two days later, she couldn't remember how to work the microwave, and in the supermarket, she wandered around in a daze, forgetting where things were.
As a child, Mum made our frilly, smocked dresses, both because she enjoyed sewing and it was cheaper than buying clothes from Napier's limited fashion stores. Each morning, Mum would plait my silky blonde hair, wrapping pretty ribbon around the limp ends. She liked us to look presentable at St Patricks Church on Sunday mornings. As I grew into a self-obsessed teenager with an opinion about fashion, Mum took me to the local sewing shop, where we pored over Butterick patterns and rummaged through rolls of colourful fabrics.
Huddled over the sewing machine, Mum pedalled long into the night as I slept. I awoke to new clothes dangling on the doorknob in my bedroom. Once, I moaned selfishly that the dress "looks nothing like the picture in the pattern".
But on December 20, 2007, Dad wrote that Mum "forgot how to work the sewing machine". Later that day, he took her to the rental they owned, to fit new curtains, where she "took forever to put the curtains up".
On January 3, 2008, three days after my parents ushered in the New Year, Dad wrote: "Mary woke feeling she had nothing to live for." A month later, she was prescribed an anti-depressant after Dad told her doctor she was depressed. I never knew how sad she was - when we talked, she worried that I was okay with my young children and a husband who was frequently away for work.
On March 18, 2008, Dr Hosford visited. Dad was hopeful: "I asked him if it was a possible mistake. He said it was possible, and to keep her on her drugs."
In 2008, Mum also kept a diary. Over the year, the entries become shorter and vaguer, her handwriting messier by the month. Sri Thai, the restaurant where she went regularly with Dad, was misspelt Sri Tye. My mother had been a perfect speller, with faultless, teacher handwriting. Dad wrote some entries, as did my sister, Fee.
STAYING STRONG FOR HER FAMILY
Mum never revealed her emotional state to me, although she broke down to Fee, confiding that she was worried. In her diary, she remarked on the house feeling cold at times, and how tired she was. I visited in the school holidays with my daughters. I tried to talk to her, to check she was okay, as she chirped, "Fine dear". Stimulation seemed to drain her - after a weekend with my kids in May, she spent the following morning in bed.
On August 31, 2008, Mum wrote that she had lunch with Dad's mother in the Napier nursing home, Rymans, unaware that one day it would be her new home.
That month, she was prescribed a new Alzheimers drug Exelon, which made her vomit as she struggled to keep anything down. On July 17, Dad was at his wits end as he mopped up her vomit all night. He considered phoning an ambulance. Dad stopped her drugs. That month, Mum wrote a letter to her brother, Steve, taking almost two hours to write three paragraphs. "Lost it on the computer," Dad wrote. Later that year, the specialist prescribed patches, which made her itch like crazy.
On New Years Day 2009, in Tekapo, Mum was seriously confused. Aged 63, she had no idea where she was, asking Dad if he was going to visit his brother (who lived in Australia), and she wondered why the television news was about New Zealand. A month later, she mistakenly drank canola oil thinking it was juice, and one day, she was unable to tell the time. She forgot how to use her Eftpos card. Her specialist told Dad that she would probably need to go into a home in two years as she would be impossible to cope with.
Dad shared this with us, and we struggled to comprehend such news. Some of my favourite memories are of Mum sitting up with Dad in the evenings proofreading a newspaper - a job he took on at The Daily Telegraph to bring home extra money - of visiting Cambodian refugees to help them learn English, reading prayers at church, of Mum turning my birthday cards and photographs into magical books bound with colourful ribbon.
In 2009, two years after her diagnosis, Mum was so confused that she stopped driving. A year later, aged 65, she began visiting the Mahana Club - a daycare place for people with Alzheimers. "Not happy," Dad wrote. It was at this point that the disease was hardest for all of us, when Mum completely withdrew but was still aware enough to know that she was declining. Dad had kept her condition quiet among many people, apart from close friends and family, including her six siblings.
There was a point where Mum could no longer be left with my children alone and that broke my heart. I was in denial. But Dad would say she wasn't well enough to be left while I went out for a break - a solo time with my girls that she once treasured, when she would organise their arts and crafts or set up tea parties in the garden, while folding my washing into immaculate piles.
The following two years were a blur of more tests and scans, showing her brain had shrunk, and she was put on new Alzheimer drugs which made her constantly vomit. When my marriage broke up, I told Mum, sobbing on the phone and unable to get out of bed. Mum didn't sound all there. A couple of years before, she would have been in the car and at my side. But my mother - her ability to do that - had gone.
I can't read Dad's diary entries now without sobbing. As I was turning 41 and trying to piece my life back together, Mum was vomiting, at times she was incontinent, one morning she woke with swollen lips and bloody teeth.
Almost four years after Mum was first diagnosed, she spent her first night in care. Once a relative with Alzheimers goes into a home, there's often no turning back. Dad was exhausted from caring for his wife as though she was a toddler who could not be left alone. On September 5, 2011, he wrote: "Took Mary to Waverly House - two nights. Bliss!"
That was the toughest time for us as a family, when we hoped that she was now too far gone to understand where she was and what was happening to her. When Dad was told she needed to go into a home, he wrote: "Shock!" But just before Christmas, he struggled to get her to eat or walk, and early the following year, he wrote of the days when she didn't know him. Mum went into full-time care. When he visited, he found her "standing by the front door looking sad". Mum shifted to Rymans in September 2012, where she has lived, and deteriorated, over the past four years.
Now 70, we have no idea how long Mum will live for. A year ago, I didn't think it could get any worse, but she was still saying the occasional word, and lighting up when young children were around. Alzheimers patients are often taken back to another time, and for Mum, I wonder if the world she went back to was a primary school classroom. Now, not a single word utters from her lips.
Despite not knowing my name when she shifted to Rymans three years ago, Mum could still play beautiful songs on the piano. That's hard to understand. But according to research, the part of the brain that responds to music is one of the last ones to die.
I try to reach her through music, when I visit her in the home when I'm in Napier. It's tough going into a living room full of lazy boy chairs packed with grey heads and wrinkled faces and searching for my beautiful Mum. Part of me would rather remember her as she was, sitting at a piano, her fingers dancing across the keys, or plaiting one of my girl's hair.
I still get the occasional glimpses of familiarity. We all do. When I visited Mum a couple of months ago, I held her hand and sung the songs she loved at her Catholic church. "Our Father, who art in heaven..." I sung, clasping her hand. My mother's lips moved as she tried to hum along. Mum looked straight into my eyes and smiled.