Not Right In The Head

by Michelle Wyatt

  Michelle Wyatt has been a television producer for thirty years, in Australia and the United States. She lives in Melbourne with her husband, a sports journalist, her son, and two naughty little dogs. This is Michelle’s first book.

  The SAGE Test, beginning on page 228, is reproduced with the express permission of The Ohio State University.

  First published in 2016

  Copyright © Michelle Wyatt 2016

  All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to the Copyright Agency (Australia) under the Act.

  Allen & Unwin

  83 Alexander Street

  Crows Nest NSW 2065

  Australia

  Phone: (61 2) 8425 0100

  Email: info@allenandunwin.com

  Web: www.allenandunwin.com

  Cataloguing-in-Publication details are available

  from the National Library of Australia

  www.trove.nla.gov.au

  ISBN 9781760290566

  eISBN 9781952534126

  Typeset by Bookhouse, Sydney

  To my dad, whose unwavering love and dedication should be bottled and handed out to couples around the world

  Contents

  1 Mrs Pitt’s gone shopping

  2 Leaving on a jet plane

  3 ’Twas the Night Before Alzheimer’s

  4 Testing the waters

  5 Somebody hide the knives

  6 Everything must go!

  7 Location, location, location

  8 Hopelessly devoted

  9 The elephant in the room

  10 Let the games begin

  11 Clothing optional

  12 Take my wife

  13 Baby talk

  14 Take me back

  15 André, André, André

  16 To be brutally honest

  17 All aboard

  18 Pushed to the limit

  19 Signs—sealed and delivered

  20 The circle of life

  21 Timing is everything

  22 It all comes down to this

  23 One last time

  24 The final curtain

  25 Life goes on

  Helpful websites and organisations

  Self-Administered Gerocognitive Exam

  Acknowledgements

  SATIAMIME Test (Self-Administered, Totally Inconclusive and Mildly Irrelevant Memory Exam)

  1

  Mrs Pitt’s gone shopping

  One of my earliest childhood memories is lying in bed at night and hearing my mother yell into the phone, ‘Mum—don’t forget to hang up the phone!’ More yelling, and then eventually the sound of my mother placing the receiver down, followed by a deep grumbling that only pure frustration can conjure. Shortly afterwards, Dad would enter the bedroom I shared with my sister, scoop us out of bed and bundle us into the car for a late-night drive to the Melbourne suburb of Collingwood. We would lie in the back of the family wagon (and when I say lie, I literally mean lie; no seatbelts were required back then, so my sister and I would lie top-to-tail across the back seat)—and, after a fifteen-minute drive, Dad would announce our arrival into the ‘spotting zone’. We weren’t going to my nan’s house to deal with phone-gate. Nan didn’t have a telephone so would use various public phone booths around her neighbourhood to keep in touch. Which one she used on any particular day or night was anyone’s guess. My sister and I would try to keep our overtired eyelids open enough to locate the one dimly lit phone booth with the swinging handset somewhere within Nana’s neighbourhood, motivated by the prize of a Caramello Koala chocolate for the first one to spot it.

  Back in those days, if someone phoned you landline to landline and didn’t hang up at their end, your phone was rendered useless until their receiver was placed properly back in its cradle—otherwise the call was still effectively active. We would often hear Mum pick up the phone, only to start yelling into the receiver the name of the person she last spoke to. Usually it was Nana.

  It wasn’t as if Nana meant to cause such an upheaval every time she rang late at night—in fact, Nana probably didn’t even remember she had called at all by the time she walked back through her front door.

  Nana had Alzheimer’s.

  The phone calls didn’t always end in a late-night family expedition to locate and replace the dangling handset. Sometimes Nana would call to say the power in her house had gone out and none of her lights were working. These calls usually resulted in Dad flying solo; the phone-booth journey required a driver and a spotter, hence the family excursion. It was always a case of Nana having not turned the lights on, and I found it so peculiar that she didn’t know how to turn the lights on and off on her own.

  Then we’d get calls from her neighbours and friends informing us of Nana’s latest adventures. The lady who lived next door would call and simply say, ‘Mrs Pitt’s gone shopping.’ Sounds innocent enough, except those calls would always come between the hours of 1 a.m. and 4 a.m. I still have visions of Nana tottering into town in her dressing gown—buttoned unevenly, of course—handbag clenched firmly under her arm, stopping only to check, every block or so, under the guidance of a flickering street lamp, that she had the house keys.

  In the early days, Nana would catch the tram to our house every Saturday morning and spend the day; if Mum and Dad were heading out to the local dinner dance later that evening, she would stay the night and look after us kids. I must have been about six or seven when I noticed she was ‘acting weird’. My sister was four years older than me, and my brother, being ten years older, was probably not around as much. He had little tolerance for Nana’s shortcomings: she was a big part of our lives, and my brother had obviously witnessed firsthand the decline in her mental state—but all I ever knew was a nana who was a bit different. Much of the time spent at our house would involve her wandering around asking if anyone had seen her keys. They were always in her bag—just where they were last time she checked. My brother was so annoyed one afternoon that he got some ribbon, threaded her keys onto it and hung it around her neck! I guess the frustration of such adverse behaviour in our loved ones can drive us to the edge. I remember it used to make me laugh. To me, as an innocent kid, Nana was hilarious.

  Forty years ago, many older people, rather than being diagnosed as having Alzheimer’s or dementia, were simply considered ‘senile’. And to be fair, the older generation were living in a swiftly changing world, in which technology was progressing at a rapid rate. Even small changes such as circular dials on phones changing to push buttons were advances people like my nana had to get their already muddled heads around. The decimal system had also changed from pounds and shillings to dollars and cents, so paying the conductor for her tram ride required a little extra mental power. When your brain is also starting to decline, life can become very confusing!

  Nana had to manually light her gas fireplace with a match, and the carpet in front of it had several burn marks where she would just drop the lit match. She started leaving the gas stove on, so my cousin would call in on her way home from work each night and take the knobs off the stove, just in case Nana decided to whip up a little midnight snack and leave the gas running; my uncle would stop by each morning on his way to work and put the knobs back on. As her dementia worsened, Nana would spend all day wandering around the city and arr
ive back home around 5 p.m. A little sit down on the couch to rest would result in a two-hour nap. During daylight saving, it was still light when she woke around 7 p.m., so Nana would think she had slept all night and totter off into town for the day, only to find it all dark and deserted by the time she got there. More confusion.

  My mum, unlike her sister, had a driver’s licence, so she was the one called upon when anything went wrong with Nana. When all of this was going on, Mum was about the same age as I am now. I have no idea how she coped with the constant worry and disruptions—trying to look after three kids, with my dad often away through the week working.

  It should have been enough to drive her crazy.

  Maybe that’s exactly what it did.

  Alzheimer’s is a tough topic to write about with any kind of light-heartedness, so I have tried to get the balance right. This is not a self-help book, nor is it a medical guide, unless my Dr Google skills are valid enough to earn me the letters MD at the end of my name. Instead, throughout this book, I share stories of my own family’s experiences, and also the stories of others who have lived through this disease. I also try to offer a general understanding of the disease, its possible symptoms, and how it progresses. My lawyers probably want me to say something here like, ‘This book does not endorse any therapy or drug use in the prevention or treatment of Alzheimer’s’—and I agree, I endorse nothing (unless I am offered copious amounts of money to do so and even then the lawyers would put the kybosh on it). At the end of the book you’ll find a list of helpful Alzheimer’s organisations and websites, if you feel the need for more information and support.

  I guess the main catalyst for writing this book was a desire to share my family’s personal story, but also to reassure people who are caring for a loved one with Alzheimer’s that they are not alone, and that others are going through very similar scenarios. I still grieve daily for the loss of my beautiful mother, and I see my father’s constant struggle to continue on without her. But as a family we got through it—and what ultimately did get us through was allowing ourselves to smile and laugh occasionally at some of the unusual and challenging circumstances that arise when caring for someone with Alzheimer’s.

  I’m not suggesting for a moment that, for anyone who has a loved one living with Alzheimer’s or dementia, life is a walk in the park and a reason for laughter—even to this day I find it heartbreaking to see what this disease does to people. I don’t laugh at the disease or anyone who has it, but when you are confronted with something so challenging that pushes your comfort levels, it’s important to find something to help you deal with it—and to quote a cliché, sometimes laughter can be the best medicine.

  We found as a family that sharing these stories and finding the occasional moment to see the funny side helped us cope—and still does to this very day.

  It’s comforting, even if just for a minute.

  2

  Leaving on a jet plane

  I was the youngest of three children and, being the last to flee the nest, had a special relationship-cum-friendship with my parents. Even though I had been reminded way too often that I was an ‘accident’—they wanted just a boy and a girl, and then they got me as well—I think this in some way made me closer to Mum and Dad. My brother used every opportunity to remind me of my accidental status, and often when we were fighting he would tell me that I was actually adopted; I never believed him, knowing I was just a victim of the ‘third child syndrome’. During regular slide nights with the extended family, he would also take great delight in pointing out the dearth of photos of me as a baby—and the photos I did appear in often captured just the top of my head, with my brother and sister sitting or standing either side. Framing and composition were not my parents’ strong suit. Luckily that phase of my brother’s teasing only lasted a couple of years. When it became evident that my sister was the smart one of the family, his attention turned towards her and she has copped it ever since.

  It seemed like it was often just me and my folks hanging out as I coasted through my teenage years. This closeness continued well into my adult life and I counted my parents as two of my best friends. Dinners out with my friends were often attended by my folks, and their house was open all hours. They were the kind of parents who allowed us to follow our dreams with just the right amount of sensible guidance and support. I knew from an early age that I wanted to work in the television industry, so they totally supported my passion and Mum would chauffeur me to and from job interviews from the age of sixteen. Whatever happened in our personal or work life, they would always have our backs, and there would always be a bed at the house for us and our friends.

  I was one of those kids who hated sleepovers and school camp. I barely spent a night away from my parents, and even when I left home at eighteen, I called them every day and visited at least twice a week—mainly for the home-cooked meals and laundry services. Even once I was holding down a well-paying job, Dad would always walk me out to the car and hand me twenty dollars for petrol money.

  Just before my twenty-eighth birthday, an opportunity arose to move to the United States for a job. I couldn’t pass up the chance, but the idea of living overseas was rather daunting, not just for me, but my parents as well.

  Once I’d made the decision to go, it seemed like I couldn’t go to any supermarket or shopping mall without hearing ‘Leaving on a Jet Plane’ streaming over the speakers. That song had always made me cry, even from a young age. To be honest, every John Denver song has that effect on me, but this one in particular could take me from zero to ‘it’s just the pollen in the air’ in seconds.

  My parents were excited and heartbroken as they waved me off at the airport terminal with tears in their eyes. Mum insisted that I give her a signal, once I was on the plane, to let her know everything was okay. I’m not sure what she’d imagined could go wrong during the journey from the departure lounge to the actual plane—those loading ramps can be very tricky. Back then, you could actually go out to a viewing deck and watch the planes take off, so I knew Mum and Dad would be out there in the freezing cold, waiting for my signal. I leant across the other passengers seated in my row and asked if they could raise and lower the window shutter a few times. If nothing else, I’m sure this request signalled to my seat buddies that, for the next thirteen hours, the ‘crazy woman in 26C’ was probably someone they didn’t really want to chit-chat with.

  So I had fled the nest—but I still rang my parents every day to share my daily experiences, which they lapped up. During these phone calls I could always tell when Mum had visitorsin the house. She would know it was me as soon as she picked up the receiver and heard the international dial tone. A pause at her end to make sure her guests were listening, and then she’d say, ‘Hello, darling, are you calling all the way from America?’ It was her way of bragging to her friends that her daughter was living overseas. How terribly exotic it must have been for those ladies sitting at Mum’s kitchen table, sipping their cups of tea and nibbling on nutloaf. I would always cut these conversations short—it got a little tiresome to hear her repeat every detail of our phone call to her eager audience.

  ‘Oh, you took a subway to Central Park … You wandered down Fifth Avenue … You ate a bagel for breakfast …’

  I flew them out to visit me a number of times in the US, the first time to stay with me in New York City. Prior to that, the furthest they’d ever travelled was to Tasmania, so that trip was a big adventure for ‘Ma and Pa white-bread working-class Australia’. I pushed their boundaries with as many cultural challenges as I could and they loved it. They even managed to head off on a five-day rail adventure along the east coast of the United States, ending up in Boston. I was so proud of how brave and self-sufficient they were, as I thought such adventures would be way beyond their comfort zone. Thinking back, I did notice that Dad was doing a lot of the planning and directing, but I just assumed he was trying to let Mum enjoy the trip without the pressure of organising everything. (Many years later I learnt
that on that first trip over, they’d arrived at the departure terminal of Melbourne airport without their passports. Mum was sure she had them, but when she opened her handbag at the check-in counter—ba-bung!—no passports. Luckily my parents had reached the age where they turned up at least two hours early for everything, so my sister called a family friend and navigated them to the hidden spare key at our house so they could drive the passports to the airport—probably with still enough time for my parents to be first in line for boarding.)

  Each time they made the trip overseas to visit, I would notice they had both slowed down just that little bit. They were getting old and I wasn’t seeing them every day, so those little changes that go unnoticed seeing someone face to face every day become big changes when six months to a year have passed without seeing them. I spent almost ten years living overseas, and returned home to find a very different mother to the one I’d left. I had no idea her ‘memory’ was getting so bad.

  It’s funny how you can spend your life expecting something to happen, and then when it does, you don’t even realise it’s upon you. Nana had Alzheimer’s and we all joked that Mum would also end up with it. Even Mum would often say, ‘If I end up like Nana, please just put me in a home.’ (When I was about ten Nana took me aside and whispered to me, ‘Whatever you do, don’t let them put me in a home.’ That memory always appears in my head like something out of a Harry Potter movie. Not sure what I could have done at the tender age of ten to stop that happening, but I did feel resentment towardsmy mother and my aunt when they eventually did put Nana in a home.)

  So we’d make fun of Mum every time she forgot a name, or called us by the wrong name. Oh yes, we were hilarious. We then started to notice that she wasn’t joining in the conversation much, and was just adding the odd ‘yes’ and ‘that’s right’ here and there. I would call to chat on the phone and ask what she’d been doing: ‘Oh, bits and pieces.’ Bits and pieces was all I could get out of her, until she’d eventually say, ‘I’ll just get your father.’ Still, we put this down to nothing more sinister than Mum getting a bit doddery and forgetful.