Catherine Lea's Blog, page 3

The Learning Curve

I can’t believe it’s almost two months since I posted here. For a while there, I thought my life was about to be funneled into caring for the girl with little time for anything else. In January, we were given six months. Here it is August already. There are moments I can’t believe we’ve made it this far.

We had her birthday in June. We went to Valentines family restaurant. On our way out, she asked about Christmas. Some things don’t change.

Some do.

The Girl’s blood tests tell us that her liver is in ‘terrible shape.’ So what’s new? Her liver has been in terrible shape for I don’t know how long. Over the past six months, I’ve been hoping for the best, and expecting the worst. We’ve had periods of wellness followed by bouts of disaster which have been resolved back into periods of wellness. I’ve had some amazing support along the way. One thing I’ve learnt is that this is a journey that requires a lot of support. And good decisions.

So here are a few of the things I’ve learnt that help me deal with each day as it comes:

If mealtimes become difficult, don’t sweat it. Appetite is often the first thing to go. This time last year, the Girl would eat anything and everything—and often things she shouldn’t have. Nowadays, it’s hard to find anything she wants to eat at all. She’ll request roast chicken, then push it away untouched. She’ll demand toasted cheese and onion sandwiches, only to find she can’t swallow them. I made pork dumplings after she bleated bout them for an entire day, only to have her eat two, choke, and leave the rest.

For a caregiver, self-preservation is the key to surviving this journey. I’ve learnt to prepare whatever meals are easiest. If she doesn’t eat it, I’ll make something else that’s easy. Canned corn has become my trusty backstop. If that fails, it’s a meal replacement milkshake. Last week she had a Goody Gumdrops ice cream and a meal replacement drink for dinner. It played havoc with her blood sugars, but I’ve learnt that sometimes it’s about quality of life.

Pain medication has been another learning curve. Offering her stronger pain relief sounds like a no-brainer. What isn’t obvious is that pain treatment comes at a cost. The downside of her pain relief is constipation. With her liver functioning as poorly as it does, it can take as little as a day for toxins to build up in her system. If I give her Paracetamol with Codeine, I’ve learnt to follow it up with a laxative. I now administer Paracetamol and Codeine along with a laxative as a matter of course. It’s not always easy to work out her pain levels. She has a high pain tolerance. But despite the Girl’s lack of communication, I’m getting better at figuring out when she needs it.

I’ve learnt that because the Girl’s liver isn’t functioning properly, it doesn’t distribute glucose as it should. That means if her evening meal isn’t reasonably substantial, her blood sugars will drop overnight. If they drop in her sleep, she could easily slip into a coma. Now, I check her blood sugars at bedtime, during the night, and first thing in the morning. I also keep a jar of jellybeans on hand for times when it drops too far. I can’t tell you how many breakfasts a delighted Girl has kicked off with a handful of jellybeans.

I’ve learnt to accept help. This has been the the biggest concession for me. Up until recently, I thought it was my duty to soldier on; that because my Girl spent time in care, that she deserves it, that this is her time. She loves her home and her room. She loves her routine, her music and her Playstation. There have been times when I was under so much pressure, my stress levels rose and I felt like I was failing her. I’ve come to realize that if I’m to last the distance; if I’m to be there for my Girl, I can’t do it on my own. I have a lady who comes in three nights a week to sit over while I sleep. That’s funded by the state. I can’t say how grateful I am.

And finally, I’ve learnt that taking breaks is vital. Because the Girl is more at ease in her own environment, it’s easier for me to go away than to send her anywhere. This weekend, the Girl’s wonderful art teacher has offered to care for her while I spend three days with my sister, Chookie Lou. The picture above is from the front windows of Chookie Lou’s home. It’s not too shabby. I’ve stayed with Chookie Lou a total of three times this year. It’s not easy to leave my Girl behind. I’m reluctant to take time away from her while she’s well. I don’t want to miss any of the time I have left with her. On the other hand, if I’m going to stay the distance, I need to keep my sanity. Last Wednesday night, she wasn’t well. She dozed for an hour during the night and finally drifted off to sleep at 6:15 am. It’s not the first time. I wind up a zombie the following day. I know I’m a better mother and a better caregiver when I’m rested. It’s a wise decision to take the time away. But I miss her more than I can say.

Lessons have a habit of coming along when we need them. Some lessons are tougher than others.

If you’re caring for a terminally ill loved one, take the path of least resistance, grab any help you can, and take breaks when opportunity arises. Those opportunities may not come back. Looking after yourself doesn’t mean you’re weak. It doesn’t mean you’ve failed. It means you’re thinking rationally. It means you’re in this for the long haul.

And I applaud you for it.

Another Mark on the Checklist

Yes, I can check one major item off my checklist: my book, The Candidate’s Daughter, is finally published and available. It’s taken some work. I’ve been fortunate enough to have a fantastic editor in Sara J. Henry (author of Learning to Swim, then A Cold and Lonely Place), and some fantastic support along the way from friends and family. If you’re interested, you’ll find my book here: The Candidate’s Daughter

The reason I mention it now is because I know this journey I’m on with my Girl is getting tougher. Last night she didn’t want her dinner. She complained of sore legs, sore arms, and ear ache again. I gave her Paracetamol, rubbed her arms and her legs, gave her Nilstat for oral thrush, and put her to bed. At 1 a.m., I heard her stir so I got up.

Her blood sugars were a staggering 1.8. So it was out with the midnight feast of jellybeans and Fortisip, a liquid meal replacement formula. I also have a diet variety but that doesn’t get her blood sugars up. Fortisip does. Two hours later, with her blood sugars at 6.2 and her “Hypo” sweats abated, I finally went back to bed.

This, I know, will not get easier. For some time now, I’ve been in somewhat of an emotional void. I haven’t known how I was “supposed” to feel. If that sounds weird, let me explain. Up until now, we’ve had our ups and downs. In between periods of apparent wellness, we’ve hit lows during which we’ve made panicked dashes into the hospital. All the while, I’ve kept at my writing. All the while, I’ve been totally focused on getting my work up online. Because that’s the only part of my life that isn’t about my Girl. It’s the last sliver of my existence that’s totally mine.

And very soon, that will disappear.

I’ve been told by the experts that this journey I’m on is not a sprint—it’s a marathon. Ahead of me are hills and valleys that will test my edurance, that will push me to the very edge and change the way I live.

We all have this romantic notion of the family sitting around the bed of the terminally ill patient, holding their hands until that final moment when their eyes blink momentarily open, and they say, “I love you all, and thank you.” There’s a moment of suspense, a faltering breath, and then they’re gone. A few sniffles over a peaceful passing.

That may happen, but during the time leading up to this point, it’s a totally different story. An emotional wrecking ball is swinging the carer from one extreme to the other, and with every swing, their emotional resolve wavers and their physical energy takes a hit. There are fits of rage at what’s happening to their loved one; there are moments when they’re pushed to their absolute limit, and the fatigue and exhaustion feels like a tsumani has crashed down on them, sweeping the very ground out from under their feet.

I guess I’m fortunate. I have the support of my family and a range of amazing services offered by organizations like the Hospice. I know what’s coming. I think I’m prepared for it. I also know I’m not.

But at least I can look back and know that I’ve completed the goal I set myself—I’ve got my work out there. I can put my toe to the starting line knowing I have some closure on that front.

Now it’s time to concentrate solely on my girl. It’s time to step up to take that first next step on that marathon. It’s time to throw everything into making the last moments of my Girl’s life the best they can be. It’s time to start saying goodbye.

Wish me luck.

This Is What I’ve Come To…

I’ve been the full-time carer for The Girl for over eleven years now. Some of that, I’ve worked part time, but nothing of late. During the course of this time, my life has changed by small, seemingly insignificant increments. It was only today that I realized how much those changes add up to and how differently I see our world. For example, these days:

A shower in relative peace is a luxury.

Styling my hair consists of aiming the drier at my head while I’m applying makeup/cleaning my teeth/unblocking a drain; and waiting until my hair’s stopped dripping.

Application of said makeup consists of slashing a couple of eyebrows on with a pencil and flicking a mascara wand at my lashes (preferably without blinding myself).

A telephone conversation initiated by me begins with, “Yes, I’d like to make an appointment to see the doctor, please…”

A telephone conversation initiated by someone other than me begins with, “So how’s The Girl today…?”

A family outing is comprised of twenty minutes at a budget hairdresser, twelve minutes at the video store, and seven minutes driving at 10 kph over the speed limit so we can get home before The Girl’s blood sugars crash.

Visitors are people who come to a) deliver packs of adult diapers b) ask if I’d like to change electricity providers c) collect The Girl in an ambulance for another dash to the hospital.

An evening out arises when the company contracted for support sends a sitter so I can do something life affirming, and I wind up wandering around the local mall because I can’t think of anywhere else to go.

My hobbies include housework.

My preferred gardening methodology is termed ‘perma-culture.’ That’s posh for ‘neglected.’

The drapes at the rear of the house are permanently drawn so I can’t see how perma-cultured my back yard is.

The gym is a distant memory. Yoga is a more recent memory. The dog never lets me forget it.

30% of all meals are eaten standing up.

The remaining 70% of all meals eaten while sitting are interrupted by a) a bathroom break b) a coffee spill c) a sudden and inexplicable need to find a CD that’s been lost for seven weeks.

Ironing is something I do on special occasions. I never iron.

It takes me an average of three seconds to locate my gardening shoes, my scuffed and tatty flat shoes, and my sneakers.

My high heels are somewhere in the closet under a layer of dust.

Jeans without holes are the new black.

Jeans that require heels never leave the closet.

Bedtime happens at sundown.

The sun rises an hour after I do. In winter, it’s two hours.

A soft moan in the night means either the dog is dreaming, or the Girl needs Paracetamol.

Cancelling four consecutive lunch dates with the same person due to “unforeseen circumstances” is the norm.

A two-hour shopping excursion results in groceries.

97.6% of all conversations include the words, “blood pressure, blood sugars, medication, and poo.” Often all within one sentence.

Xbox is another word for “Escape.”

Booker Dewitt, the lead character in the game Bioshock Infinite, is counted amongst my friends.

Six hours of unbroken sleep is unheard of.

Socializing requires the phone or the computer.

“High Alert” is standard operating mode.

“Red Alert” is one level above “High Alert.” The consensus is that if “Red Alert” continues to recur at the current rate, it will be downgraded to half a level above “High Alert,” and “Meltdown” will supersede it.

Aspiration has everything to do with the involuntary inhalation of food or liquid particles, resulting in pneumonia, and nothing to do with career goals.

The way I live is of my own choosing, and I wouldn’t have it any other way. One day my world will expand again. But one huge part of it will be gone. It’s truly a doubled-edged sword.

If you know someone whose world has contracted while they care for a sick loved one; if there’s someone close to you whose life is dominated by difficult circumstances—even if it’s of their own choosing; do something for me:

Give them a call. Let them know you’re thinking of them. Drop in some small token of your admiration for them. It doesn’t have to be diamonds. A small bunch of flowers, a couple of muffins, a handmade card can make the difference between hope and despair. Let them know the world is still out there for them; that you’re still there for them. And that you’ll be there for as long as it takes.

From one who knows, it’s more appreciated than you could imagine.

Beautiful Girl, What Would I Do Without You?

Three short days ago, my beautiful Girl was rushed into the Emergency Room. The short story goes that her blood pressure was down, her blood sugars crashed, and her pulse was squiching along at half its normal pace. It turns out she had pneumonia. Today she’s sitting up in a hospital bed watching Pokemon and demanding Christmas be brought forward. She’s stunned the medical staff and her estimated date of discharge has been set at either Monday or Tuesday.

With the benefit of hindsight, none of this shocks me. Yes, I’m amazed we still have her. Especially after the events of the last few days. But this girl has more lives than a bagful of cats. And that’s given me pause to think about some of the things I love about her.

Her Appreciation for the Arts: Some years ago, I took her to the Disney on Ice production of Beauty and the Beast. The skater in that Mickey Mouse costume may well have been slated for his lacklustre performance on the night, but for at least one small member of the audience, his stumble and subsequent face-plant on the ice was the highlight of the evening and will be forever remembered with much amusement.

Loud Running: For a Girl with no appreciation for time constraints, there are so many attention-grabbers that can hold you up. Like Walking-While-Cuddling-Dead-Cat, Heading-For-the-Bathroom-While-Inspecting-CD’s, or the equally freeze-you-in-your-tracks Going-Out-to-the-Car-While-Checking-Contents-of-Lunchbox. When she was more mobile, I countered this lack of urgency with Loud Running. It was achieved by shouting, “Loud Running” and The Girl instantly increased her pace while yelling at the top of her voice. It was a one-time offer that remained in effect for a maximum of five seconds, but the results were instantaneous. I swear, magic could not have achieved the same results. I wish I had household cleaners that worked that well.

Her Cultural Awareness: I’m proud and amazed that my Girl can recite an entire Maori Haka, or war chant. Despite the fact that I find the phrase, “Yowdie Yowdies” in the second stanza highly questionable, I know that she’s picked up enough of the language that native speakers actually recognize it. Like the lovely Maori taxi driver who wheeled her up to the door and told me in astonishment, “She can speak Maori.”

“Yes, I know,” I told him. “I bloody wish she could speak English.”

Her Perennial Optimism: The world must be a wonderful place when you’re constantly looking forward to something. Birthdays and Christmas rotate on an annual basis. You just get one out of the way, and the other automatically slots into place.

Her Ability to Prioritize the Important Things In Life: Presents, mashed potato, art class, cheese and onion sandwiches, Playstation, lemonade, going to the video store. What more could a person possibly need?

I love that her view of life is so simplistic. She knows what she likes, and her expectations are few. She’s brave, she’s funny and she has no preconceived ideas about people. Until they go up against her in a battle of wills, and she loses.

If you take her as you find her, you’ll find a true friend. You bump heads with her, she’ll remember it for life and howl every time she sees you. And she’s taught me more in our thirty-two years than I could have found in any number of books.

But that brings me to an issue that many don’t think about – or maybe don’t need/want to think about. In this age of technological advances, as society strives evermore toward beauty, intelligence, and perfection in our future generations; and parents not only have the option to choose their baby’s sex, but now have the option to eliminate offspring with inherited illness and genetic defects, what happens to those children of the future born with disabilities? As we move forward, congratulating ourselves on our ability to weed out the ‘damaged,’ what happens when a section of our society is diminishing?

Will society become less tolerant; less accepting? Believe me, it’s only a scratch below the surface. I spoke to a woman only yesterday whose daughter has five children. For some reason I can’t even begin to comprehend, the general public feel it’s their right to pass judgement on her – to make comment on her choices. She said people will actually approach and ask her if she knows what contraception is; or whether she knows that population levels are already too high. I know what she means. If you’ve read my blog, “Moments I’m Not Proud Of,” you’ll see that I’ve had my own fair share.

And if this is the reaction to a large family, what will the reaction be to the parent who chooses to bring a child less perfect into the world? That they’re stupid? Selfish perhaps?

This is not a rant extolling the virtues of abortion over pro-life, or vice versa. And, I understand that with the advances in medical screening it’s now possible to detect illnesses that no parent would wish upon their child. And that given the choice, many would opt to terminate rather than inflict a future of pain and physical torment on their child.

But what if I’d made the choice not to have my girl; if I’d taken that other road in which she wasn’t a part of my life? Sure, there have been times I wouldn’t wish my lot on my own worst enemy. Of late, I look around and I wouldn’t exchange it for the world. If I didn’t have my Girl, would I be the person I am now? Would I have learnt the lessons I have? Strived to be as accepting as I am now?

And how much would I have missed?

I’m just saying…

And Just When We Were Getting Comfortable…

Remember that old song, “What a Difference a Day Makes?” That’s rapidly becoming our theme song.

On Tuesday (two days ago), my girl complained of sore ears, sore tummy, sore legs, sore everything between. When your vocabulary is limited, “symptom strafing” is often the only way to get your point across. So I took her to the doctor where I counted off all the various ailments, adding that her blood sugars had been going up and down like the needle on a politician’s polygraph, and the thrush in her mouth might have returned.

The gurgling sound in the back of her throat the last few nights completely slipped my mind. Until yesterday.

So Wednesday morning, cue the opening bars of said theme song: The Girl has had a restless night, so I let her sleep late. At 8:30 a.m., I waft in and raise the blind. The girl looks decidedly pale. Her chest is rasping like a blacksmith’s bellows and her blood sugars are horribly low. When I attempt to sit her up and feed her some honey to get her blood sugars up, she groans and her eyes flicker open. Then close.

A wave of panic hits me me.

I call the doctor – no instant reply. I call the hospice support nurse, then the district nurse. There’s a decision process you go through, weighing up the options and the possible outcomes. Do I? Don’t I? What if I’m just panicking? But what if I’m not? The Girl looks terrible, so I call the ambulance.

By the time the paramedics arrive, her blood sugars haven’t moved, and her temperature has plummeted along with her blood pressure. Further readings in Accident and Emergency tell us her temp is two degrees below normal, and her heart-rate is half its normal pace. In the back of my brain, I’m thinking, Thank God I did the right thing.

Then the coin flips.

While the doctors take her vitals, insert a catheter, study her notes, I’m hovering and getting in everyone’s way and asking, “How is she? What’s happening? What do you think?”

I suspect they want to say, “Give us a bloody chance, will you?” but they smile and tell me they’ll let me know as soon as they know “– which, of course, is code for “Give us a bloody chance, will you?”

I tell the doctor about the sore legs, the sore arms the headaches. I tell them she’s been on Codeine for pain, and that because it causes constipation, I’ve been administering a laxative tablet to keep her regular. I also mention that I’ve got Lactulose but I’ve been advised not to give it to her because it causes stomach pain. That’s why I was at the doctor in the first place – the stomach pain etc. He tells me that in his opinion, the Lactulose would have been better.

Typical. You ask sixty-seven doctors a question, you get sixty-seven different answers.

An x-ray show she has shadows on her lungs. Not one lung – both. That could indicate one of two different scenarios: When her blood sugars dropped, she may have aspirated. Maybe she lost consciousness and saliva ran to the back of her throat and into her lungs, and that’s caused pneumonia.

Terrific! Why didn’t I check her blood sugars? Why didn’t I sit her up when I heard the gurgling? Dammit all! Why didn’t I mention it to the GP when I was there? How could I be so stupid?

Scenario Two is that she’s her liver has deteriorated to a point where it no longer provides a thickening agent to the blood, and that now her blood has thinned to a point where it leaks across the capillary walls and is filling her lungs.

Why didn’t I do something earlier? Why didn’t I prop her up in her bed at night? How could I have let this happen?

It’s obvious this isn’t the first time the doctor has seen the expression on my face. He places his hand on my arm and says, “Stop looking for ways to blame yourself. This was going to happen. Regardless.”

Somewhere in my brain there’s a voice saying, “He’s right. There was nothing more I could have done.” But somewhere in the dark recesses of my mind, I’m still scouring my memory to find that moment, that clue that should have told me this was coming so I could have avoided it.

By 1 p.m. the catheter has emptied her bladder and a laxative has ‘unblocked’ her a little. Against all my expectations, my Girl has rallied. Her temp is back up, heart-rate increasing, blood pressure rising. I heave out a huge sigh of relief. I’m exhausted.

She’s out of the woods, but she’s not back on the road. This is only a clearing. My wonderful neighbour arrives. She’s acting support crew and she’s brought bread rolls and smoothies. Despite my repeated thanks, she has no idea how much her help means to me. The Girl is moved to the Observation ward until a bed on an upstairs ward becomes available. While we wait, a nurse sweeps in and asks what The Girl wants for lunch. I tell her mashed potato. She tells me she can’t do individual items. She says there’s a set menu. I’m wondering why she asked in the first place. Again she asks what The Girl would like. I tell her we don’t mind. Miraculously, she finds a menu with mashed potato and a spare meal for me.

I ask the head nurse if The Girl can eat. She says yes, but only sitting in an upright position. They’re worried about the danger of her aspirating. I’m wondering if they think I’m a complete idiot, that I lie The Girl flat and pour drinks down her throat. So I sit her bolt upright and as I’m spooning soup into The Girl’s mouth one millilitre at a time, a second nurse whisks in and tells me she shouldn’t be eating. There’s a hushed debate out in the corridor, and a chart is affixed above The Girls bed. Apparently, she can eat mashed potato and now she can drink in sips.

At 8 p.m. The Girl is moved to a ward where she has her own room. We’ve been in A&E for ten hours. An hour shorter than the last time.

As soon as she’s settled in the ward, I reluctantly leave.

At 8:30 p.m. I arrive home to find the dog throwing himself at me. He can hardly believe I’m still alive. But at just after 9 p.m. there’s a call to say The Girl’s blood pressure has dropped. I gulp down coffee and soup and return for a second bedside vigil. For the first hour, I fully intend staying with her. There’s a comfortable chair in the room and a nurse brings me blankets, but every time I close my eyes, the squeak of shoes heralds yet another blood pressure reading…a temperature check…her pain medication – “No, not Codeine, that blocks her up”…a change of pain medication, Aarrrgghhhh!

Zombiefied, I head home again.

This morning there’s a call. The Girl is asking for crayons, a colouring book and her mummy. I don’t care if she eats all the crayons. Hell, I don’t care if she eats the book. What could possibly happen? She’ll end up in the hospital?(don’t answer that). In a couple of days, I suspect The Girl will be home. We’ll fall back into the routine and one day The Girl’s health will deteriorate and we’ll jump back on this merry-go-round. How many times, I have no idea.

But here’s the thing: I’m not an overly religious person, but I’ve come to this conclusion: We have an alloted time on this earth. With all the best intentions, we can intervene, medicate, and treat for symptoms and pain. But in the end, the body decides when to call time. There is nothing we can do to change that. This is not my Girl’s time. I cannot take responsiblity when that time does come. I must remember this. I probably won’t

Until then, I’m still blessed.

It’s the Little Things…(Or, First World Traumas)

So we’re currently riding one of the peaks of this rollercoaster ride. The girl is relatively well, her blood sugars within readable limits. I’ve upped her pain medication, so both of us have the chance to breathe. Now I can concentrate on other things in my life. Like writing, publishing my book, THE CANDIDATE’S DAUGHTER, through Amazon and Smashwords. Learning to format and edit to within an inch of my sanity. The mouse.

That’s right – THE MOUSE!

We had mice before. I hate it. They leave little black currents in the cupboards and pile up stashes of dog biscuits behind the fridge. I thought I’d dealt with it. Three weeks ago, the dog chased a mouse into the bathroom. It scaled a towel hanging over the bath and I found a tiny, frightened body hunched into the plug hole. I dealt with it swiftly and surely, then went back to my life.

A short while later, I was pulling into the driveway, and what do I see? A mouse on the grass outside my house. It scampered and scuttled and boinged its way up the grass then headed toward the neighbour’s place. I smiled and drove into the garage. Incredibly, the same thing happened two days later – mouse, scamper, scamper, boing, boing! Except this time to the other neighbour. I’m like, “Wow! How often do you see that?” Ignoring the tiny voice in my head that’s asking exactly how many mice there are that I can’t see.

Next thing I know – yes, we’ve got another mouse. There’s poo in the cupboard and chomping noises emanating from behind the fridge. I pulled out the fridge, gouging the wood floor, and sure enough, dog biscuits. I cleaned them out. And worried.

I told my neighbour I’d have to use poison.

“You cannot poison them,” she said. “It’s cruel. Get a trap. That’s what we did.”

So I go down to Bunnings Hardware Store where the guy in the pest eradication section tells me, “Yes, a trap is the best way. These days they’re so quick, the mouse won’t know what hit it.”

I bring the trap home, test it. The spring is hair-trigger. Hair-trigger! You only need to look at the thing and it snaps shut with the force of a tiny guillotine.

The traps sits on the kitchen counter for almost a week. Finally, after finding mouse crap in the cupboard for the umpteenth time, I know I have to do something. As instructed, I put peanut butter in the little bowl of the trap, pull out the fridge again (gouging the floor in the process), and set the trap.

The next day, I grab the fridge and gently pull it out (scoring the floor yet again). Sure enough, no frikkin’ peanut butter, and the trap is still set.

“Oh, hair-trigger, is it? Traps are best, are they?” I’m muttering as I shove the fridge back in.

Now I don’t know what to do. The peanut butter clearly didn’t work. And now the mouse is skipping across the living room floor going hither and yon while I watch TV. The dog no longer cares. He knows the mouse is smarter, faster – probably stronger than he is. And he hates the dog biscuits anyway.

I leave the trap behind the fridge. I’ve got far more important things to consider. Most pressing of which is that I’ve got my grief counsellor arriving at 9 am. I’m tearing around, dressing and toileting The Girl, trying to do the dishes, and the washing and apply my makeup all at once (and failing miserably), when WHACK!

I look to the fridge. The dog also looks, then scuttles across. Next thing…

SQEEEEEEAKsqueaksqueaksqueak…clatter, clatter…squeeeaksqueaksqueak

“Oh, terrific!”

The squeaking and clattering goes on and on. I latch onto the fridge with a hand either side, and pull it out, gouging the floor for the millionth time and muttering, “It’ll never know what hit it,” in one of those wheedling childish voices. I get the fridge out, and sure enough, sitting there with its spindly little foot stuck in the trap, is the mouse. It’s got fire in its eyes, and its ready for the fight of its life. From the corner of my eye, I see another tiny shape dart out the door. It’s probably a second, opting to live and fight another day.

Friggin hell, how many are there!

The mouse is now leaping and thrashing around and the trap is crashing against the floor, the walls, the fridge, the mouse (although that’s not really making any noise). With all the clattering and squeaking, I can hardly think. I’m standing there with my hands clasped to my chest and my lips sucked in. I have to do something, and I have to do it now.

But what?

I race to the cupboard and get a Tupperware cup…No, too small…a mixing bowl…too wide…a pasta container. Perfect.

The mouse is watching me. It’s eyes are narrowed and its expression is grim, yet determined. In one swift movement, I lunge, scooping up mouse, trap, and a handful of dog biscuits in one go. The mouse leaps and rattles and hops inside the container. With all the urgency of the Westpac Helicopter rescue team, I burst from the back door and run up the back yard to the feijoa tree.

“Quit jumping,” I’m yelling at the thing. When I go to stick my hand in, the mouse leaps at it. “You bite me, it’ll be the last thing you ever do,” I warn it.

Finally, I lift the spring with the tip of my finger and the mouse slithers from the container and into the bushes. Which is where the one from the bathplug went. It’s probably the same bloody mouse. It probably beat me back to the house.

Almost as if the scene has been staged, my grief counsellor arrives. She advises me that opening the door with my hand on my chest and the word, “Tragedy” on my lips possibly isn’t the ideal way to greet a grief counsellor. But she’s a doll and she fully understands.

I wish these damned mice wouldn’t come in. If I thought I could knock them off peacefully, I’d be grinding up handfuls of Valium and leaving out tiny saucers of gin. But they’re not that easily fooled. They’re not about to pack up to move to a nicer neighbourhood. There’s been a population explosion over the summer and there’s approximately sixteen zillion waiting in the wings.

But it’s given me something else to think about. When you live in an isolated world where you expect the worst, any diversion is a blessing. Until more currents appear in the cupboards, that is. Which will probably happen before I’ve finished writing this.

*Sigh*

The Problem With Terminal Illness

It seems obvious. But here’s the biggest problem with a long, slow terminal illness – it’s just that. It’s long, it’s slow, and it’s very terminal.

For me, it’s like being behind the wheel of a slow-moving car. For much of the trip, the car has been relatively comfortable. We’ve hit a few bumps along the way, but we’ve recovered, got a grip on the wheel and carried on.

Somewhere in the back of my mind, however, I’m painfully aware that this is very much a one-way trip. The car joggles along at a leisurely pace, but I’m not fooled into thinking this is some Sunday drive. I know we’re moving ever closer to a terrible collision, and there’s no way I can avoid it.

There’s no option for simply veering off this road and onto some tributary that’ll take us to a place of safety. It’s like a narrow pass etched into the side of a mountain. We’re stuck on this course and there’s nowhere else to go. Believe me, I’ve looked. I’ve searched the terrain for offshoots I can steer us up; rest stops I can pull into. And despite the fact that our journey takes place at seemingly snail-pace, I look out the side window and I’m watching the landscape of time passing us by. In January, the doctors gave the Girl six months. I have no idea if it will indeed be a six-month journey. I watched summer go by and now here it is autumn. It could be a twelve month journey. It could be longer.

And here’s one of the big problems with journeys like this – those around us, friends and family, see our days melding one into the next. They think that today is exactly like yesterday and the day before that. Believe me, I’ve fallen into that trap. I’ve woken in the night panicking because I haven’t taken enough photos of my Girl, haven’t spent enough time or sung enough songs with her. Suddenly, I find items on that Bucket and Spade list that probably won’t get ticked off, regardless of how mundane they are.

The Girl wanted to go to Valentines. I doubt we’ll get there. Even if she could sit through a couple of hours at the table, I know she wouldn’t eat because all she wants these days are the meal supplement milkshakes I make her. She wanted to go back to the beach again. I was lax. Life got busy. Then one day, summer was gone. It’s too cold to take her to the beach to play in the sand, and even if it was warmer, it’s getting too hard to take her on my own. This is time we won’t get back again. We’re in a steady descent on this journey and those opportunities are now in the rear-view mirror.

And that’s the other problem with a long, slow illness. Just like me, others forget. They know The Girl is ill. They’ve know for six months, some longer. But they have their lives to get on with. They have sick mothers to tend to, and grandchildren approaching their first birthdays. They have trips away and work commitments and all the usual stuff filling in their days. I don’t blame them. My days are full. People don’t see it. They think I sit home enjoying myself.

Believe me, nothing could be further from the truth.

Take yesterday, for example. The Girl didn’t wake early. She didn’t sleep the night before because she had ear ache. She told me she had sore feet, sore tummy, sore eyes. I got up and gave her Panadol and Codeine and went to bed. When she didn’t settle, I got up and took her to the toilet. When she began to cry that her ears were still sore, I sat up and rubbed them. Then I got a hot water bottle and put on her pillow. She finally settled at some time after one o’clock and I went back to bed.

The next morning, she slept late and I let her. Saturdays are art class. She adores her art class. So at nine, I woke her. She didn’t want breakfast, just the milkshake. I got her ready, which takes more time now because I have to assist her everywhere in case she falls. Showers take longer, dressing takes longer. I finally got her to art at close to ten thirty. She said she wanted roast chicken for dinner so I went to the supermarket and got a chicken for her. I got home at twelve, and the phone call to come and get her came at two.

Her art teacher said she’d been complaining about sore ears, so I took her to the emergency medical centre. Two-hours and $70 later, we got the same diagnosis on the ears as we did on Wednesday when I took her to the doctor – a little wax, but no infection. I took her home. She never ate lunch, didn’t want dinner. I put her to bed early and gave her a milkshake.

I have no idea where we are in this journey. I have no road map to indicate how far along we are.

All I know is that this car has no brakes so I can pull over; it has no horn so I can signal others when I’m scared. There are no lights I can flick on and off to alert people to the fact that I’m in this car alone and I need help.

Please, if you know someone in their own car. If there’s someone near you who’s caring for a loved one in the final stages of their lives, please, just pick up the phone. You don’t have to do anything. It doesn’t even take much time. Just ask them if they’re okay. Ask them how their loved one is. Let them know someone out there cares. And do it often.

You have no idea how much it will mean to them.

Under Pressure

The Girl on Polly.

Friends, fans, followers, people I’ve never met,

As you’re probably aware – or if you weren’t, you are now – I haven’t blogged for almost two weeks now. It’s not because I didn’t want to. I’ve been suffering from a bout of poisoning. Not physical poisoning, this was mental poisoning. I had toxic sludge coursing through my veins. And, as I later discovered, it was all to be expected.

Let me explain.

My beautiful niece flew in last week to get married. This girl, just for the record, is tall, slim, and absolutely gorgeous. At one stage, she did a spot of Modelling – well, with a figure like that, it was the obvious choice. But of course, being unbelievably brilliant and securing her PhD in the sciences, she chose to follow her dreams and become a scientist working in London with her ab/fab fiancé, a neurosurgeon.

Believe me, if I’d written this girl into a story, any agent worth their salt would have immediately written a reply, saying, “Dear Ms. Lea, I read your manuscript with interest, however at this time I won’t be offering representation as I find your heroine just far too perfect and unbelievable, and no one ever lives like this. I wish you every success, blah blah.

And it’s true. Everything about this girl is fabulous. She’s widely travelled, politically astute, and, to make matters worse, she’s the sweetest, most wonderful girl, so you can’t even hate her.

Don’t get me wrong. She has worked hard; still works hard. She’s currently working in a team to find a cure for Motor Neuron Disease. There are times when she’s so snowed under, she hardly finds time to eat. She’s committed and deserves everything she has – amazing husband and fabulous job included.

But at the end of the day, she is everything my Girl is not. And the differences between them are hard to overlook.

So, somewhere amid all the excitement of the impending nuptials, something I thought I’d slain long ago invaded my brain one night and threatened to turn me into something I really didn’t like. First, it was like a small, yet intensely hot flame had burst into life in my chest. Next thing, I had toxic fumes of anger and jealousy leeching into my system and coursing through my veins. I tried dousing them with sensibility. I tried tamping them down with common sense. But somehow, my level-headed eye-glasses got knocked sideways and suddenly all my niece’s excitement, happiness and good fortune were, in my mind, contrasting with my own Girl, who would never have her happy ever after; whose health problems worsen each day; whose next milestone is finality. And it all seemed so unfair.

I kept telling myself not to be so stupid, that I’d gotten over all these feelings long ago and left all this crap far behind. But the more I fought it, the more those feelings raged.

And by the time I got home from the wedding, all these dreadful emotions had gone out and invited friends over. I had something like Saturday Night Fever of the Damned partying through my head. I kept thinking, “I’ve dealt with this shit. Why is it coming back?”

The following day, The Girl was unwell so I kept her in bed and stayed home for some serious inner demon wrestling. At one point, I really wasn’t sure who was in worse shape, The Girl or me. Some hideous narrator in my mind kept throwing comparisons between this girl and mine at me. They went like this:

• Incredibly tall/Unusually small with physical abnormalities

• Beautiful and gregarious/Not so beautiful and single-minded

• Unbelievably intelligent/5-word sentences

• Free thinking and independent/Totally dependent and always will be

• A long life filled with joy/A life shortened by liver disease and diabetes

• Well-travelled/Never leaves home

• Has a husband who loves and adores her/Has a toy lion, a dead cat, and a bunny rabbit with indelible ink scrawled across it (oh, yes, and me. Although at this point, I wasn’t worth much)

And with every comparison, I got angrier and the jealousy and pain swelled.

Then it got worse. The monster in my head made me start seeing the inequities as some kind of punishment I didn’t deserve. I kept wondering who “Up There” had it in for me and what I’d done that could have been so bad? I was beginning to think I’d gone all the way back to where I used to be and that I’d never get over this.

Then something in my brain kicked in and rational thought moved in.

First, I started see the picture as it really was. Not as the demon would have me see it. I made myself respond to some sensible questions. Like:

• Has my niece’s good fortune been at our expense? – Answer: No.

• Did anything anyone has done create this situation? – Answer: No.

• Do I think my niece doesn’t deserve everything she’s got and worked for? – Answer: Definitely not. She deserves everything she’s got and I wouldn’t have it any other way.

• Would I want her to be as ill as The Girl? – Answer: Good God, no!

• Would I want her to be unhappy; to lose her gorgeous husband or her job? – Answer: Bloody hell, what kind of a person would I have to be?

• Would thinking someone else was unhappy make me feel better? – Answer: That’s just plain ridiculous.

And then I came to realize something else. If The Girl wasn’t the way she is; if she was smart, if she was tall, if she was this way, or that. If she was everything a person ‘Should’ be – well, she wouldn’t be my girl. Would she?

Let me tell you, I’ve been through some tough times. I’ve had to work hard to be able to rationalize in this way. I’ve gone through crap I wouldn’t have my worst enemy experience. I’ve done things for others with a smile on my face and pain and sorrow and grief I can’t even begin to describe in my heart. And when it’s patently obvious that I’m suffering; when it’s as plain as the nose on your face that I’m really struggling to keep my head above water and the people I thought who really cared can’t even pick up a phone to see if I’m okay, I tell myself one thing:

After all I’ve been through, I’m human. And I will survive. I will use every form of self-preservation I can think of. I’ve learnt to be stronger, tougher, more resilient. I’ll rise like a phoenix from these ashes and I’ll love my Girl until I don’t have her any longer.

And I’m a better person for it.

More Moments I’m Not Proud Of

Potential Lemonade

We’ve had a tough time this year, no doubt about it. It’s made me think about the tough times we’ve had in the past. But there’s an old adage about lemons and lemonade. And there have been times I felt like I’d scored industrial quantities of lemons.

Such times have made me think in a different way. Don’t get me wrong, I didn’t veer completely off the path. I didn’t dive into an all-out crime spree. But there were moments when the bottling of said lemonade may have involved somewhat erroneous labelling.

Let me explain.

Years ago, when The Girl was two years old and weighing in at around 10lbs, I took her on trip back to my home town, Auckland. Along the way, one of the gorgeous Air New Zealand stewardesses leaned over the girl and said, “Oh, what a beautiful baby. How old is she?”

Being a naive twit, and oblivious to the implications of such an enquiry, I relied, “She’s two.”

“My goodness,” the stewardess replied. “She’s so small…” Did you spot the ellipsis at the end of that quote? What those dots represent is an entire minute of unwavering eye contact while she waited for the explanation. Now, if you’ve read my other post, Moments I’m Not Proud Of, you’ll recognize a, “What’s wrong with your little girl” moment arising. Again, I was naive. I did my saintly explanation and we all moved on.

On the return flight, however, a second sweet, wonderful stewardess leaned over The Girl, turning it into some kind of airborne Groundhog Day, saying, “Oh, what a beautiful baby. How old is she?”

Now, it could have been my stay in Auckland that triggered something. It could have been some kind of aviation sickness. It could have been something I ate. Unlikely, but I believe this was a turning point in my life; that moment when the lure of deceit was just a little too enticing; when that evil twin took me by the hand and led me to the Dark Side (to use a bunch of mixed metaphors), because that tic in the corner of my eye activated, and without even thinking, I replied. “She’s six months,” and quickly looked away. Which would have been fine, except the stewardess from the first flight suddenly appeared from the rear of the plane like an avenging ghost, saying to the second stewardess, “Oh, Carol, did you see this gorgeous baby? I met her on the way up to Auckland. Did you know she’s two years old!”

Note: one red-faced mother spluttering ridiculous explanations. Maybe it was my imagination, but I’m sure the service levels on that trip fell into decline shortly after.

And yet, there was no stopping me.

Auckland Zoo ticket office, circa 1989: I step up with the now eight-year-old Girl in her stroller. The pricing board clearly states “Adults: $20, Children aged six to fourteen, $10. Under-five’s are free. The kid behind the counter catches my eye and says, “How many?”

“One adult, one three-year-old,” I tell him without even flinching. By this time the blackness in my heart has spread; the evil solidified.

He looks down at The Girl, then back up at me. There’s a glint in my eye. I shift my weight, jut my chin just a little. Nobody, and I mean nobody, in their right mind will challenge the mother of a disabled child. I know this. I have vast experience of the discomfort in others. I also know he’s on minimum pay and the line behind me is growing. He hands me my ticket and I swan off, revelling in my deceit.

Which might have been nice. I saved myself $10 on the way in. On the way out, however, I spotted the sign that says, “Caregivers entrance: free.” I went back to the car with my lips in a knot. I never made that mistake again.

And yet, almost the same thing happened on several occasions after.

Valentines Family Restaurant, circa 1997: Occasion: The Girl’s birthday. Going to Valentine’s restaurant for The Girl’s birthday has become a tradition – or should I say, an obsession. The first time I took her, she was sixteen. She looked like a child; ate like a horse. Children were charged in accordance with their age – so as a seven-year-old I got her in for $7.

Sweet!

In 1998 when she turned seventeen, I took her as a seven-year-old, which also cost $7. After three years of birthdaying as a seven-year-old, I felt a twinge of guilt and put her age up to eight. Remember, I was working on the “No one in their right mind challenges the mother…” principle. I did it because I could, and I did it because it worked.

This went on for another three years, always getting her in as an eight-year-old, always paying the $8. The Girl would sit all sweetness and innocence with her balloon and glass of fizzy drink, then clear three plates. Until the inevitable happened. The wonderfully sweet restaurant manager began recognizing us – recognizing her. Dammit!

Our cunning ruse came crumbling down in June 2003.

The manager was at the desk. “Hello again. Another birthday. How old is she this year?” she asked sweetly. Maybe it was me, but I thought I detected a hint of menace in the tone.

I turned pale. Looked around for support. There wasn’t any. When I turned back, our eyes met; locked. “She’s twenty-three,” I replied in a strangled voice.

“Lovely,” she said. “Shall I get the balloon?”

So that was it. Goodbye cheap birthday meals. On the upside, every year when we go back, we get terrific service.

And finally:

Our favourite No-frills hair salon, circa 2004: Children under five get cuts for $10; teens, $15; adults $22. The Girl got $10 haircuts for three years as an eight-year-old until we walked in one day and one of the new stylists recognized us.

“Oh, look,” she shouted to her colleagues (the ones that practically knew us by name, address, and shoe-size), “You’d never believe how old this girl is. She’s twenty-two!” Her gaze returned to mine, seeking confirmation and thinking I’m going to be impressed with her feat of recollection.

My gaze did a quick trip around the salon where everyone, and I mean everyone was looking at me in askance. I nodded sickly. “Mm-hm, that’s right, twenty-two,” I said, the sound barely penetrating my tightly drawn-together lips. So long, cheap haircuts, it was good to know you.

There was no upside.

These days I’ve given up on a life of crime. The Girl no longer looks eight-years-old, and the embarrassment isn’t worth it. I guess that’s the only moral I can take out of this. But I did okay while it lasted.

And on occasion, I still make the odd batch of lemonade.