The games coordinator came over to break up the party and get the ‘wander’ moving along in an orderly fashion to their scheduled activity. In the organised chaos, the coordinator didn’t notice that she’d lost one—the Maltese lady had decided she was coming with us and proceeded to follow us to the exit, through the dining room, and past the solo diner, who again started up his ‘Hey, hey, hey!’ Our party of four had made it to the exit doors. Dad, in his haste to avoid the impending drama of leaving our new friend behind, couldn’t quite punch in the passcode correctly. He tried it over five times, but simply wasn’t pushing the buttons hard enough. By the time I punched the code in correctly, with an electronic click and a release, the Maltese lady was through the door, walking free. Maybe we were getting that big bowl of spaghetti for dinner after all.
Dad tried to walk her back through the door, but she wasn’t having any part of it. Luckily the activity coordinator appeared, ushering the lady back into the safe confines of the dementia ward. I can only imagine where the rest of the activity group were by the time she made it back to the games room—the ‘wander’ would have scattered like a dropped bag of dry rice.
By the time we reached the car, I was an emotional wreck. Being back in the ward where I had spent so much time with Mum, and seeing my son nonchalantly interact with those women, was all too much. After a few minutes of hugs and kisses and praise for my beautiful boy, he firmly told me I was embarrassing him and that it was time to stop crying.
Roger that. All good.
And with all the good that comes from having your child spend time in a nursing home, there is bound to be some bad. There is no nice way of saying it, but germs love nursing homes. It must be impossible to stop patients spreading germs—most of them can’t remember their own name, let alone the correct protocol when it comes to coughing, sneezing and hand sanitising.
There was always a silver lining to a gastro shutdown at the nursing home: it meant Dad was locked out for a few days, and he could spend some time with us. It may sound selfish, but in my mind, Mum was being cared for just fine where she was, and we got to have our dad back for a while. Whenever the name ‘Dad’ came up on my phone anytime prior to 8:30 p.m., it meant one of two things: either something was wrong with Mum, or the nursing home was in flu or gastro shutdown and Dad was locked out. Neither scenario was good, but the latter one was also tough for Dad as he’d worry that something horrible might happen to Mum and he wouldn’t be able to protect her. On more than one occasion he tried to sneak into the building while it was in shutdown, but rules are rules, and he would end up making the pilgrimage to our house with his overnight bag packed with enough supplies for one day. Yep, he was always convinced he’d be back at the nursing home the next day—even though the shutdown almost always lasted four to seven days. During these lockout periods, his daily routine at our house was always the same. He would get up in the morning, come downstairs, and the first thing out of his mouth was: ‘Can you give the nursing home a call and see if I can go back in?’ Maybe he was imagining that a SWAT team from haz-chem had sanitised the place overnight, magically removing all traces of infection and potential contagion.
As great as it was to have Dad stay with us during those periods, watching him throughout the day was not dissimilar to seeing a dog tied up outside a supermarket waiting for its owner to emerge with a leg of lamb. He couldn’t really relax, and every time my phone rang, he would rush over and hover next to me in case it was the nursing home calling with the all-clear.
He wasn’t used to being away from Mum, but he did make it over to our house every Thursday night. He would get Mum settled in her bed around 8 p.m. and as soon as her eyelids shut, he would very carefully remove her hand from his and tiptoe out of the room. He would then call me from his mobile and just say, ‘Leaving now,’ and head down to his car. I would then call our local fish and chip shop, place our order by simply saying, ‘Order for Frank,’ which they would acknowledge and then hang up. I would set the table and wait for Dad to arrive. We had this routine down like a well-oiled machine. It was always a battle to get my son into bed on those Thursday nights, as he knew his papa was coming over and would use every inch of energy to stay out of bed and awake for his arrival. Dad would turn up, we would eat dinner, have a glass of wine, watch TV and chat for an hour, then we’d all go to bed. Next morning Dad was up with the birds, piece of toast for breakfast, and out the door to be back in time for Mum to have her breakfast. Outside of us visiting the nursing home, that was pretty much our entire interaction with Dad, but we took what we could get.
While Mum was in the nursing home, there was only one other time we had Dad for an extended period. It happened to be a Thursday night; my husband, my son and I were heading off overseas the following day, so Dad was going to break his routine and drop us at the airport by 9 a.m. the next morning. I was putting my son to bed, awaiting the ‘Leaving now’ call from Dad; it got to about 8.45 p.m. and still no call, which usually meant something had happened at the nursing home with another patient, which delayed getting everyone else into bed. By 9 p.m. I got a little anxious—fuelled by my son not cooperating with his bedtime routine and asking why Papa hadn’t called yet. At 9.15 p.m. my mobile rang with an incoming call from the nursing home. The woman on the other end could speak just enough English to say the words ‘Frank’, ‘fall’ and ‘hospital’. I jumped in the car and arrived at the emergency department in the next suburb to find Dad being lifted out of an ambulance on a stretcher. He looked like he’d just gone ten rounds with Mike Tyson—although thankfully both of his earlobes were intact.
Turns out the elevators in the nursing home had decided to take the night off, so Dad left the building via the dimly lit fire-exit stairwell. His foot tripped on the top step and he proceeded to tumble down a full flight of concrete stairs, ending up in a heap on the landing. It wasn’t until one of the nursing staff entered the stairwell at the end of her shift that he was found trying unsuccessfully to get up. For an 82-year-old man, he chalked up an impressive list of injuries—broken nose, cracked rib, broken wrist, and a gash down to the bone on his forehead that has freakishly healed to resemble Harry Potter’s scar.
So, looking for that silver lining again, we postponed our overseas trip and Dad came to stay with us for about two weeks while he recuperated. He was not the best patient by a long stretch. Even with his injuries, he was still keen to spend as much time as he could at the nursing home, so I would drive him up there, drop him off for a few hours and then bring him home. Much of those few hours in between I spent wandering around the local shopping mall, indulging in a little ‘retail therapy’—but my self-medicating meanderings proved anything but therapeutic when we received our bank statement the following month!
14
Take me back
One of the fascinating things about Alzheimer patients is how their brain can transport them back in time, to a joyous period in their lives—such as the gentleman I mentioned in a previous chapter who believed with his whole heart that he was still an active practising dentist; comfortingly, the staff would go along with his conviction, and often ask him for random teeth checks to keep him in his ‘happy place’.
Wouldn’t it be nice if we could all just go back and live in the time of our lives again? Maybe that’s the one nice thing the brain does for those with Alzheimer’s. It says, ‘Hey, I remember being deliriously happy when we were 25 years old—let’s go there.’ (I wish my own brain could physically take me back to a younger, better-looking and smaller dress-size me.)
During the early stages of her disease, Mum would walk around the house reliving phone conversations with her sister. Mum had always spent a lot of time on the phone—so much so that we used to joke she ought to have the telephone handset glued to her ear. (Lucky mobiles weren’t around in her heyday or we would have had to mortgage the house to pay the phone bill—or she would have been repeatedly incarcerated for using a mobile while driving.)
Asid
e from those imaginary phone calls, we didn’t see a retreat to any particular period in Mum’s life—perhaps there wasn’t one particular period of her life that she enjoyed more than another. She obviously loved her children and grandchildren with her whole heart, so they were always her ‘happy place’.
It seems children are a trigger for Alzheimer patients; many go back to a time when they were caring for babies, which is why Mum’s nursing home had an area set up as a pretend nursery with a cot, change table and dolls scattered around. And yes, they were the kind of dolls whose eyes follow you around the room at night. The older ladies in particular loved that area. They would spend hours in there rocking the dolls to sleep and dressing them in clothes. The human brain is so fascinating: these people had lost all ability to care for themselves and recognise their own loved ones, but still knew how to care for a baby. Basic human instinct is so strong, and you see it kick in over and over again within these facilities. Somehow the ability to perform an ingrained or habitual task or activity is in our psyche, and we can’t not do it.
Case in point, Bobby. A rotund Irishman who was always smiling, despite his confinement to a wheelchair—one of those bed-type ones that allow the patient to recline for medical reasons. Bobby had been in the nursing home as long as Mum and was a familiar face during our visits. He spoke with a fairly broad Irish accent, and was a fair way down the road with dementia, so there wasn’t a lot of in-depth chatting going on. From what we could decipher from his conversations, Bobby was quite the fisherman in his day—and the fact he was in a nursing home confined to a wheelchair wasn’t going to stop him doing what he loved. So all day long, Bobby would fish. He would lie back and cast out his imaginary line, watch it land, and then he would wait. And wait. And wait. Then, by either sheer luck or the fact that Bobby was indeed a talented fisherman, he would get a bite and reel in the catch of the day. This would go on for most of the day, casting out his line and reeling it back in. Carers and visitors would walk past and ask if the fish were biting—‘Aye, aye,’ he would reply. Bobby was happy as a clam (nice seafood simile, if I do say so myself), spending all day, every day, fishing from the comfort of his wheelchair. To see that every time I visited was rather endearing. It made me happy to think that as tough as this disease was for Bobby and his loved ones, he was in a place where he was safe, cared for and, in his mind, doing exactly what he loved to do.
Another resident who was reliving a past passion was Carlos. He was a boxer, and had all the moves—and the nose—to prove it. A shortish, round-bellied older European gent who got around in sweat pants, slip-on scuffs, socks and a singlet, he was always ready for the next round. Instead of the stock-standard hello and handshake, a greeting from Carlos always entailed him striking the boxing pose and throwing a friendly right jab towards you. This was all relatively harmless, unless you pissed Carlos off—then one of those right jabs would connect and all hell would break loose. Over the course of his stay there, his right jab unfortunately connected with a few too many of the residents, who had annoyed the otherwise placid Carlos by changing the channel on the communal television, or sitting in his favourite chair, or calling out for assistance from staff. Dad would often tell me that Carlos had got in a bit of a scuffle and he had to try to step in and break it up. Getting the dynamic right amongst patients can be a delicate balance—pretty sure Carlos’s right jab was not listed as a hobby on his application form, after all—but for the safety of the other nursing home residents, Carlos was eventually relocated to another facility.
From where I stand, being a carer in a nursing home—and in particular a dementia ward—is hard work. I spent many hours at Mum’s nursing home helping the other residents with meals, sitting and chatting with them, but whenever a volatile situation arose, I let the staff deal with it in the way they had been trained. These nurses and carers do an amazing job, and often for little thanks. I have seen patients physically and verbally abuse them, throw furniture at them, throw food in their face and generally treat them unjustly, but understanding that these patients are not of sound mind goes a long way to tolerating such behaviours. I personally would like to apologise for every time Dad walked up to a carer and complained that Mum’s soup was cold! I have nothing but good things to say about the nursing staff who cared for Mum (and, inadvertently, Dad). Their competence and compassion were unwavering, and she couldn’t have been in better hands.
It’s not uncommon to see family member of patients who have passed on return to visit other patients or staff. A special bond is made when people are going through times of stress, and part of me thinks that it helps with the grieving process to return to a place that was so integral to a loved one’s final years. On the other hand, I’m sure some families can’t deal with those memories and prefer just to move on without looking back.
Two years after Mum left us, Dad still lives in the unit within the retirement village, and wanders over to the nursing home every day to have coffee with the staff. In those later years they were essentially his family, we often say. He still does quite a bit of work around the place—mainly tending to the gardens, and conducting gardening classes twice a week for the residents.
As much as Dad loves them, those gardening classes are a source of frustration for him. After all, he is trying to teach basic gardening to a room full of dementia patients. Over the course of each one-hour class, the number of participants will go up or down, due to the nature of his clientele—because they just don’t sit down and listen … and/or watch … and/ or learn, as he’d say in his nightly rants to me. Another sign that Dad doesn’t quite get that they have no real control over their state of mind.
The nursing home has a budget for these kind of activities, so at the start of each week Dad gets a tray of seedlings, a stack of small pots and some potting soil from the local nursery. During each class, he helps the participants fill the pots with soil and plant the seedlings in them. What stops the nursing home being overrun with freshly planted little pots is that one of the residents likes to go around and pick all the flowers off anything resembling a blooming plant. The first week it happened, Dad seriously suggested to me that they should set up security cameras on the balconies so the felon could be identified and brought to justice. I talked him down from that one.
Last winter, Dad tells me, was a tough one at the nursing home’s communal gardens. They had planted six ornamental trees in the middle of the courtyard, and by early spring these should have been budding. He had been checking them every few days for signs of fresh spring growth, but nothing was happening. One morning, the reason became apparent when he discovered one of the patients carefully plucking every leaf and new shoot off the trees, which she had been painstakingly doing for weeks. I can only hope he didn’t run at her with a pair of secateurs, waving and shooing her away like some crazy man—not that he would’ve looked odd in that particular setting, if you know what I mean. Maybe I should be enlisting this lady’s services in my front garden. During summer I can’t walk down my front path without being greeted by a swarm of bees inhabiting my blossom tree. No harm would come to the bees, just merely a forced relocation to the lovely blossom down the road. I would promise to visit them on my own terms. And it would be a bit of plucking therapy for the good lady picker. Everybody wins. I did hear a rumour that she grew up in India on a tea plantation, and spent much of her life picking tea leaves.
Well, it makes a good story, anyhow.
15
André, André, André
We all know the effect music can have on our memory—hearing a song on the radio or in a shopping centre can cause all kinds of memories to come flooding back, and even change our mood. A few songs can bring me to tears within the first few bars of hearing them—but I’m quite an emotional person, so that doesn’t take much. I was quite close to my uncle, and when he died about 25 years ago, they played ‘Wind Beneath My Wings’ at his funeral. Every single time that song is on—usually at the supermarket or shopping mall—I’m
in tears within seconds. Any song from The Lion King puts me in a good mood, as I took my parents to see the stage show while I was living in New York, a very happy memory for me.
Growing up, our house was full of music; a traditional old record player was the featured piece of furniture in our living room. The lid was permanently up and there was always vinyl spinning out the dulcet tones of an old-time crooner. Each week I would walk home from Sunday school with my sister, and as we turned the corner into our street we would hear the music playing (and smell Mum’s roast in the oven—another big memory stimulant for me). Bing Crosby was a favourite, as was Dean Martin—and then heading towards the 1970s, Engelbert Humperdinck was on high rotation. When my parents discovered CDs, Michael Crawford became a particular favourite; sadly, that also meant that the UK sitcom Some Mother’s Do ’Ave ’Em became must-watch TV.
Then came the André Rieu era. Without a word of a lie, every single time I visited my parents during their last three years in the family home, one of his DVDs was screening on the TV. I’m convinced there is some kind of hypnotic incantation hidden within his music that is addictive to anyone over the age of 65. Whatever it was, it had a calming and positive effect on my mother. She would sit for hours and watch those DVDs—they were kind of like a babysitter for her. When André Rieu was flexing his bow and prancing around that stage, Mum was not pacing, nor was she fidgeting or crying—she was tapping away with a huge smile on her face. So, André Rieu it was, and as often as we could.
Once Mum was in the nursing home, Dad relocated their entire CD collection to Mum’s room, and he took it upon himself to ensure there was always music playing in the communal living area. He was spinning those discs like Fatboy Slim, and god help anyone who tried to mess with his music. (My son grew up knowing the words to old folk songs, and instead of running around singing a Wiggles hit, would belt out ‘Danny Boy’.) There was often a concert scheduled on the third floor, so Dad would wheel Mum up there for the show. He was from a generation that always arrived at least an hour early to ensure a good parking spot, or a good seat at the movies, or first dibs at the buffet, so Mum usually ended up in the front row. Now Mum at that time couldn’t walk, talk or feed herself, but there seemed to be nothing wrong with her hearing, as she would often jump at the sound of a loud noise. Still, Dad would repeatedly position Mum up the front, right next to the speaker, and ten minutes into each performance he would have to wheel her away, as she was visibly unsettled by the noise. But sure enough, each week he would do the same thing. (I think the triumph of securing that position overtook his general commonsense. It’s that mentality of taking what is on offer, even if it’s something you are not remotely interested in—if it’s free, or you’re going to be first in line, then go for it. I often have to stop Dad stuffing his pockets full of bread rolls at the local pub because they are free at the buffet. He is so proficient at procuring anything that isn’t nailed down that he will often unpack his bag at my house and reveal a stash of anything from napkins to sugar sachets, mini jam jars, single-serve butters—you name it.)
Not Right In The Head Page 8