Not Right In The Head

by Michelle Wyatt

  Given that Dad spent most of his time in Mum’s dementia ward, he knew the dispositions of just about every person in residence. One of the first residents he encountered was ‘The Whistler’. Obviously I won’t be using real names in this book, to protect the identity and the dignity of these wonderful people; I’m not sure Dad actually knew this particular gentleman’s name anyway—he just called him The Whistler. (Dad isn’t great with names, and never has been. Like many older Aussie males, he just calls every man ‘buddy’, ‘matey’ and ‘pal’, and every woman ‘love’, ‘darl’ or ‘young lady’. As a child I was always ‘fairy floss’, but I’m pretty sure he just liked calling me that and hadn’t actually forgotten my name.)

  The Whistler walked around the dementia ward whistling all day. Well, it wasn’t really a whistle as such—more like the noise you make when you suck in air and it makes a bit of a whistling sound. A bit like the noise someone who can’t whistle makes when they’re trying to whistle for their dog, or to get someone’s attention. Just a really annoying kind of noise.

  According to Dad, The Whistler only really whistled to ‘get on your mum’s goat’. Imagine that: here was a man, being cared for in a dementia ward, who walked around all day whistling, and he only did it to annoy, specifically, my mother. I tried explaining to Dad, who was never very tolerant of ‘general weirdness’ in any case, that The Whistler probably didn’t even realise he was whistling at all—but he’d have none of that. ‘He bloody knows alright!’ Dad would fume.

  To make matters worse, it transpired that The Whistler was also a bit of a kleptomaniac. A few weeks after she was admitted, I bought Mum a few pairs of new trousers and left them in a bag on her bed. Later that afternoon, Dad saw The Whistler walking by with the said bag tucked securely under his arm. Dad mentioned it to one of the carers, who then proceeded to approach the alleged felon with caution, as he did tend to have a bit of a violent streak. The Whistler took off like the clappers. It took three carers to chase him down and procure the bag, which weighed suspiciously more than a few pairs of trousers should. When Dad took the bag back to Mum’s room and emptied it onto Mum’s bed, he discovered that The Whistler had also taken two picture frames, a half-eaten box of jellies, a number of DVDs (all possibly André Rieu), the remote control from the DVD player and a bottle of moisturiser.

  The stolen goods were never in any danger of actually leaving the building, as security was taken very seriously. The doors at every entrance were locked with security codes to ensure the residents couldn’t just wander off. Obtaining entry could be a challenge—like walking into a butterfly enclosure at the zoo. As soon as a door opens, there are usually a few people gathered waiting for their chance at freedom; you really have to slip in through the slimmest of cracks so as not to let anyone out. One woman on Mum’s floor used to sit inside by the entrance with her legs across the doorway, so that whenever anyone pushed the door open, she’d be alerted to any possible opportunity for an early release. Dad got into the habit, whenever he heard the security code disarming on the other side of the door, of calling out ‘Legs, legs, legs!’ by way of warning as the unsuspecting visitor went to push open the door. Leaving was also an exercise in deception. If you lingered at the door to say goodbye, by the time your hand was reaching for the keypad there’d usually be a few hangers-on ready to leave with you. There was no point in trying to slip out with them all gathered there or you’d spend the next five minutes trying to push bodily extremities and limbs back inside—like trying to push a blob of Silly Putty back into its tin. Instead, you had to plan a few steps ahead, say goodbye discreetly nowhere near the exit, pretend you were heading in one direction—and then make a run for the door.

  There was one woman who was always beautifully dressed, hair impeccably groomed, who walked around the nursing home with an air of grace and elegance. I’m not sure if Alzheimer’s and dementia patients have a ‘look’ about them, but this particular lady didn’t fit the norm. So much so that based on her appearance alone, she managed to wander out of the secure facility several times each week. As visitors would leave, she would swan up to them at the door and, with a straightening of her twin set, exit the building.

  Having said all that, a few weeks after the great trouser robbery, I did see The Whistler leave the ward with a family member for the day, and he did actually have a couple of bags tucked under his arm. So maybe he did ‘bloody know alright!’

  One afternoon, shortly after Dad had fed Mum her lunch in the dining area, he headed back to her room to grab a snack for himself. When he opened the door, the room was darkened, with the blind down and the curtains drawn. As he stepped inside he was greeted with a chirpy ‘Good afternoon’, but could barely make out the shape of a lady sitting on Mum’s couch. Each step further inside was met with a crunching sound from under his feet. He switched the light on to see Doris from next door sitting comfortably on the couch, munching her way through a big box of chocolates perched on her lap—tossing each empty wrapper on the floor in front of her. As he moved closer to take the box from Doris, she graciously held up the almost empty box and asked if he would like one. How generous of Doris to offer Dad one of the last chocolates from a box that belonged to my mum, while sitting on Mum’s couch in Mum’s room! But these weren’t just any old chocolates from the supermarket. No, they were a box of American See’s Candies—a hot commodity in our family. Every single chocolate in that box was a winner, and I had brought that box back especially for Mum on my last trip to the United States. Ordinarily that would have been the kind of story Dad would have relayed to me during our nightly phone call, but oddly enough I didn’t hear about that particular incident until quite a few years later. Perhaps he feared the wrath I would have laid upon Doris for eating those chocolates—we all have our Achilles heels, don’t we? Good decision, Dad.

  There was another resident in Mum’s ward who was gifted with—shall we say—light fingers. Rosa was a delightful elderly lady who always had a smile on her face. She took a liking to my baby son, often greeting him with a double cheek squeeze and a heartfelt ‘Bellissimo, bambino!’ But the lovely Rosa had a dark side. She would wander through the dining room at meal times smiling at everyone, waving and chatting … and then as soon as someone looked away—swoop! As fast as lightning she would steal something from their dinner plate. It didn’t seem to matter what was on the menu; Rosa just had an appetite for other people’s food. Given that one of the toughest jobs for the carers is getting the residents to eat, maybe Rosa thought she was doing the residents a favour: a clean plate was always met with praise, and Rosa was just helping everyone along. A few of the residents were onto her and would brace themselves for the incoming invasion—but for the most part she had a pretty successful strike rate. My dad was there for every meal my mother consumed throughout her entire stay at the nursing home, so she never made it past him. I could see Dad tense up whenever Rosa started her meal-time rounds, and he’d defend Mum’s plate like a lioness defends her cubs. As Rosa’s hand reached out, he would attempt to stab it with Mum’s fork. I chastised him on many occasions, pointing out that he could do some real damage if he actually made contact with her hand and that Rosa probably didn’t understand that her actions were distressing to him. ‘Teach her a bloody lesson!’ he’d retort. Most diners, however, didn’t put up a fight. They all thought they were doing a good job of finishing their meal—even if they couldn’t remember eating those last two potatoes.

  My aunt—Mum’s sister—was quite the procurer during her time spent as a resident in a nursing home too. One afternoon when my cousin was visiting, she noticed her wearing new reading glasses. Being the primary carer outside the nursing home, my cousin was pretty much across everything that my aunt had in her possession, so she enquired where the new specs had come from. My aunt replied that they’d been given to her by a fellow resident, as she couldn’t seem to locate her original pair. A few days later, my aunt was wearing an entirely different set of glasses. Same que
stion received the same answer—she’d been given these even newer glasses by a fellow resident. A quick hunt around my aunt’s room revealed no signs of her original glasses, nor the pair she had been given the week before. During her next visit, my cousin arrived to find her mum with no glasses at all. When asked where they were, my aunt replied, ‘Somebody has stolen them.’ My cousin had just about had enough of the great glasses saga and decided it was time for a thorough search of my aunt’s room. When you have a loved one with Alzheimer’s or dementia, you need to think like they would in order to get to the bottom of situations like this, so my cousin pulled out every drawer and every box in every cupboard in my aunt’s room—and there, piled up at the back of the sock drawer, were over a dozen pairs of reading glasses. She gathered them up in a bag and took them out into the communal area, hoping to return each pair to their rightful owner. What unfolded was a scene not dissimilar to a food drop in a famine-ravaged country. Hands swooped in from everywhere, grabbing whatever they could—one woman walked away with three pairs, and it turned out she didn’t even wear glasses! My cousin had her own reading glasses ripped from her face during the ordeal and had to pry them out of the hands of a woman who truly believed they were hers.

  To this day, I don’t think Dad totally accepts that people with Alzheimer’s or dementia do not have total control over their actions, and I found this one of the toughest things to deal with. Even after sitting with Mum day in, day out in that ward, he still had this belief in the back of his mind that the people in her ward were capable of making the right decisions. Call it denial or false hope, but he always talked about Mum as if she still had days of utter lucidness. Occasionally during our nightly phone call he would say she’d had a good day and ‘was chatting away like a merry magpie’, but from spending so much time with Mum during those final six years of her life, I know that barely a word came out of her mouth—and certainly for the last three to four years she was totally nonverbal. So as much as I wanted to snap him into reality, it became painfully obvious that he needed to continue with that facade. Whether it made him feel better, or was his way of protecting us from reality, it got him through—and who was I to take that away from him?

  11

  Clothing optional

  Alzheimer’s robs its sufferers of many things, but none more unkind than dignity. You hear so many stories of wild goings-on in dementia wards—patients in bed with each other, everyone running around naked, like scenes from The Benny Hill Show. (Now I have that ‘Yakety Sax’ music in my head. Google it, and then good luck trying to get it out of your head for the rest of the day.) I didn’t actually see much of that action within Mum’s facility, thank goodness, but I do think a good story sometimes gets in the way of the facts.

  Alfie was the closest we got to such shenanigans.

  Alfie liked to walk; in fact he walked around and around the ward all day. (Interesting fact: many dementia wards are designed in a layout that makes it easy for the residents to walk around. Mum’s facility, for example, had the rooms on the outside of the corridors, and a circular courtyard in the middle.) When I’d be there visiting Mum, Alfie would probably walk past about thirty times. Nothing unusual about that, except that his state of dress—or should I say undress—seemed to change every few passes. I was sitting there one day with my niece, who was probably around 25 at the time, and Alfie walked past just wearing a white singlet. Not being a seasoned visitor, she commented how embarrassing it was to see an older gentleman’s private parts. Dad replied, ‘At least he’s wearing a bloody singlet.’

  At any given time, a number of residents would be walking around in various states of dress and undress—you just got used to it.

  The dress code in dementia wards seems to range from decent to anything that happens to be lying on anybody else’s bed. All clothing must be labelled so the laundry service knows which room to deliver the fresh clothes to. Not that it made much difference—I would often spot another resident strolling around in Mum’s nice cardigan or lovely fluffy dressing gown. It wasn’t a big deal in the scheme of things, as we usually got those items back after the next laundry day, but if most houses have a ‘sock heaven’, then most dementia wards must have many heavens, for every piece of clothing conceivable. And when it comes to underpants—that’s not even worth arguing about. Once they have been relocated, there is no return neccessary, thanks very much.

  After a while you become savvy to the clothing etiquette. Anything that you want kept exclusively for use by your loved one on a particular occasion—say a birthday lunch or Christmas Day—then best you bring that item in on the day, dress your loved one, then kiss that bejewelled piece of clothing goodbye. The more it sparkles, the more attractive it is lying on the bed or in a laundry hamper.

  Push walkers are another hot commodity. Mum’s walker would often go missing and we’d have to search high and low for it. Usually we’d find it sitting in Elsie’s room around the corner—Elsie sometimes had up to three walkers jammed into her comfy little abode. She would head off for a walk and just pick up the first walker she saw along the way. (Maybe nursing homes should consider a system like they have for bicycles in cities, where you can pick up a bike, ride it around, then drop it off at various locations around town.) The recovery of a walker was often met with hostility, but Dad became quite adept at taking corners, pushing at full speed.

  Most walkers were decorated with knick-knacks that had personal meaning to the residents. In Mum’s ward, football teams were quite the thing in terms of push-walker bling. Mum was a diehard Collingwood fan (if you don’t know much about AFL, all you really need to know is that if you don’t barrack for Collingwood, then you despise them), but we decided against adopting their black and white team colours on Mum’s walker, thinking that anything that may cause aggression might not be a good thing. Some people take this walker decoration bizzo very seriously—get a line of residents walking to the dining room at meal time and the procession can look like a Moomba Parade. (For non-Victorian readers, replace Moomba with Mardi Gras, but with fewer tits and feathers and rainbows. I may have just stumbled onto an idea for a new reality show: Pimp My Walker!)

  There was always something happening at Mum’s dementia ward. Trevor was another resident pacer—but he didn’t just pace, he paced with a purpose. Trevor would trot past numerous times during our visits, sometimes pushing a walking frame in front of him (suspiciously not his, as the one he favoured always had some knitting in the front basket). Round and round he would go, passing us every few minutes—each pass met with a friendly hello. Next pass he would have a different walker. Next an empty wheelchair. Next the laundry trolley, food trolley, a pram from the ‘nursery’ set up in one of the common areas. Personally, I enjoyed it when he came past pushing one of the other inmates in their wheelchair—usually with the passenger screaming in protest. Trevor could get up an impressive speed when he committed to it, so it was quite a job to ensure the path of his circuit remained clear, as he didn’t stop for anything or anybody.

  I guess there really isn’t much to do in these wards day in, day out. Visitors are welcomed with open arms, and over time everyone starts to look out for each others’ loved ones; amazing bonds are formed with strangers who are going through the same experiences. Nobody is judgemental of other patients or their families, and they tend to take on the care of those who don’t have friends and family coming in to visit. Dad was there every single day, all day, so he became a familiar face, and took on an enormous amount of responsibility. We would often arrive to see him wandering around the corridors with an old lady, other than my mother, on his arm.

  Gladys took a particular shine to Dad. She would follow him around all day and night. In a way it was lucky Mum wasn’t with it enough to notice, or it might have been on for young and old. Our family would roll in on a Sunday for morning tea—sometimes eight of us at a time—then position chairs around the communal living area and lay out muffins and cakes on the coffee tables; Gladys
would bring a chair over and settle in for the family gathering. The only trouble was, while Gladys loved Dad, she wasn’t fond of many other people. If anyone came within cooee of him, she would push them away, or start swinging her arms and yelling at them. Gladys would have tipped the scales at around 45 kilos, but get an old woman on a mission and she can definitely punch above her weight. God help anyone if they sat next to Dad in an empty chair while Gladys was off doing something else. She would literally drag them out of the chair, hurling abuse colourfully sprinkled with profanity. And if Gladys couldn’t find Dad, she would wander around the corridors calling his name, wandering into rooms looking for him; I would sometimes arrive and find Dad hiding out in Mum’s darkened room, with the door locked. When Dad would leave the ward at night, Gladys would make her way to the balcony overlooking the car park and stand there waving until he was out of sight. It was all rather heartwarming to some degree, but I imagine it took a bit of a toll on him, and more frustratingly for him, started to impact upon his ability to care for Mum in the way he wanted to. Eventually Gladys’s affection wavered—probably helped by the fact that Dad would constantly try to redirect her affections to any other male within a one-mile radius.

  Love can be fickle in dementia wards. I’ve seen devoted husbands and wives spend endless amounts of time caring for their partners, and not receive even a glimmer of recognition from the person they have spent most of their lives with. I can’t imagine what that would be like. I experienced it as a daughter, having spent years with my mother looking blankly at me, without any sense of knowing who I was—but to have your lifelong partner look at you like that must be soul destroying.