Monthly Archives: January 2014

There Is Such A Thing as Trying Too Hard

My GirlThis morning the sun came out. We’ve had a lousy summer so far—rain, wind, more rain. And the girl keeps tracking in a downward direction. Last night didn’t help. This morning I called Chookie Lou. I told her about last night; told her I’m the worst mother on the planet and that I shouldn’t be left in care of myself, let alone someone else. I told her I was going to blog about it.

“I wouldn’t,” she said.

I considered her response. “Why not?” I asked. “I want to give readers a true account of what it’s like caring for a terminally ill loved one. This is a perfect example of what can happen.”

“Blog that,” she replied, “and Social Services will be at your door before you can blink. They’ll use your blog as evidence and they’ll take her away.”

“Good,” I said. “Tell them to call first. I can have her packed in less than ten minutes.”

The previous night’s trauma began with a typically mundane day. The Girl had lain in her bed, sleeping off and on throughout the afternoon while an endless stream of Smurfs played out on her TV. Meanwhile, I caught up on my blogging, surfed the internet, made dinner, wondered what other people who aren’t me were doing.

That’s okay. That’s what I signed up for. I accept it. I even blog about it.

So why on earth, you may ask, could things go disastrously awry?

Like this:
Liver disease is a funny thing—okay, so not so much funny, as peculiar. The liver is one of the most amazing organs in the body. It removes toxins from the blood, distributes glucose, keeps everything ticking over. A little like your local water treatment plant. But I won’t bore you with an anatomy lesson. Just know that when it begins breaking down, it tends to do weird things. If pressure builds up on the portal vein, blood gets re-routed and turns up in interesting places like the oesophagus, where it bursts through into the digestive system and results in projectile vomiting in great, bright red spouts. We know all about that. It happened to the girl a couple of years ago. Color me surprised when the doctor told me what was happening.

When it’s out of whack, the liver sometimes throws hissy fits and decides to dump all the glucose it’s lovingly collected during the day. You wind up with blood sugars of a million in the middle of the night, and by morning you’re hypoglycaemic. Imagine how that affects the typical diabetic.

But that’s not all. When toxins rise in the blood, sufferers tend to feel disorientated, delirious, spaced out. Body clocks go haywire and next thing you know, you’re awake all night and asleep all day. Not good for the sole carer.

You can also imagine, therefore, how important it is to get rid of these toxins. The best way to do that, is … well, let’s just say via the digestive system. Perhaps, with my sketchy outline of resultant problems above, you can see why hydration is so important. It all goes hand in hand.

So when the Girl had slept for the previous three days, I became worried. And ignored my own better judgement.

At 5 p.m. she ate dinner. Slowly. I had made her scrambled eggs and chopped in some cherry tomatoes from the permaculture in the back yard. Unfortunately, she refused to drink. I came back several times with water, then juice, then a milk shake. Still she refused, and the above effects started looping through my brain. What if? What if?

Now, most people in this situation would simply think, “Easy. If it gets too hard I’ll call an ambulance.” But I can’t. If I send her to hospital, they’ll try to fix her. That’s their job. That’s why I busted her out the last time. If she goes anywhere from here, it’s the hospice. So it’s up to me to manage her illness. Which is what makes what I did next so dumb.

By 9 p.m. I was ready to go to bed. I had no one coming in to sit over so I could sleep—won’t have for the next four nights. So I must prepare. I can’t have the Girl singing and whooping half the night. So just before bed, I took her in a drink of juice. I sat her upright, put the straw to her lips.

She took one sip, then two …

… then choked. Yes, choked!

It’s called aspiration. It’s when fluid goes into the lungs. Most of us can cope. People with serious illnesses can’t. Fluid in the lungs causes pneumonia.

HOW COULD I BE SO STUPID?

This instant the juice hits home, it turns to foam. I can hear the wheezing and bubbling every time she coughs. Her lungs sound like a sponge with too much detergent soaked through it. I sit her up, push her forward, and slap her on the back. It doesn’t help. She’s still wheezing and coughing. Her face is scarlet and she’s wringing herself out. I incline the bed, roll her over, rub her back and call the hospice.

The night nurse tells me to give her more sedation. I tell her I need Buscopan. She tells me that doesn’t always work. Dear God, the things you learn. She tells me to administer a sub-cut—an extra dose of pain medication. I dig it out, inject it into her line, wait fifteen minutes. Finally, thankfully, the coughing slows, she settles. It’s now after ten. I’m exhausted.

Once she’s asleep, I say a little prayer of thanks, switch off all the lights, and go to bed.

This morning the Girl awakens. I can hear her chuckling. My relief is overwhelming. I cannot imagine how I’d feel if she died by my own stupidity. I know there’ll be a next time. But next time I’ll take my own advice. Next time, I’ll try to stand back, let things run their natural course. If that fails, then next time I won’t beat myself up. Next time, I’ll still blog about it, because this is what happens. And frankly, if it happens again, and Social Services call, I’ll tell them she’s packed and already to go.

They’d bring her back in two minutes flat.

I should also mention here than any references to Social Services were made in jest, and after the fact, and therefore, may not be held against us. Just in case you were wondering.

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Christmas Revisited

Christmas 001I’m not even apologizing for my tardiness this time. I just looked back and the last two blog posts begin with some kind of mumbled excuse for being late. I’m not doing that this time … at least, I wasn’t going to.

We got through Christmas. Or should I say, most of us got through Christmas. Some of us didn’t. There are those of us who believe they’ve been chiselled out of Christmas, that the Christmas they got was a non-event. They’re not letting us forget it. And so begins a tale of despair, misery, hope, and finally, a tale of triumph … or at least semi-triumph. You still with me? Comfortable? Good. Let’s go …

The week before Christmas, all through the house, nothing was stirring … my Girl included. She slept long and she slept hard. All I could see of her was a little face, nestled amongst the pillows. The doctor had set up a pump to deliver pain medication. All her other meds had been discarded. As they say in times of disaster, we were prepared for the “Big One.” So we waited. And waited.

For almost a week, she slept.

For the entire time, I hovered over her, brow furrowed, lip clamped between teeth. Watching, waiting.

Suspecting this really was the end, we had Christmas on the Saturday. We crushed as many as twelve people into her room, all sitting around the bed with hopeful looks on their faces. We sang Christmas carols, pulled Christmas crackers. Still she remained unconvinced.

So on the Sunday, the Chukker-boy dressed up as Santa, simultaneously delighting the Girl, and psychologically scarring the Grandson forever. No dice. She didn’t believe a word of it. She knew Christmas still hadn’t arrived. Not really. But with her energies exhausted by two Christmases spent, she slept once more.

Watching over your child as her life ebbs away is strange sensation. It goes against every instinct. Mothers by their very nature are duty-bound to keep their children from harm. We care for, we nurture, feed and support.

So to sit by, refraining from offering the necessities of life, watching on helplessly while your child fades away—despite the obvious problems, regardless of the situation—well, it feels foreign. No one said caring for the terminally ill is easy. There’s a reason for that.

So at a point when I thought I had everything under control, when I’d reached that moment of acceptance and my stress levels plateaued. With my inner calm radiating stoic resolve, and my focus shifting to the near future, my counsellor suggested a few days of respite with my Girl in the hospice.

I hesitated. By all accounts, I had a handle on things: Inner calm: Check. Grip on reality: Check. Sensible brain engaged: Check.

Then I thought, “Why not? The offer may be a one-time opportunity.” So, not wanting to look a gift horse, I bundled my Girl, her medication, a few hurriedly-collected clothes, and Booboo the bunny rabbit into the car, and happily took off to the hospice.

Did I dance the dance of the free? Did I race about catching up on my shopping, the latest movies, my last minute Christmas shopping?

The hell I did.

The instant I got home, I flopped on the couch. Inertia set in. I couldn’t move. Some swine must have slipped into my house while I wasn’t looking and sucked every ounce of energy out of me. My limbs weighed a couple of hundred kilos each. Every now and then I managed to raise enough oomph to open my eyes and let out a groan. Meals consisted of shortbread biscuits and chocolate from prematurely opened gifts (the wrapping from which now formed my only living room Christmas decoration, since all other decorations [tree included] had been transported to the Girl’s room). Occasionally when it got dark, I rolled off the couch and crawled to bed. For four days, my bed went unmade, the dishes undone.

Eventually, I found me again.

I began to think straight. I drank liquids without an alcohol content. I ate foods that boasted a level of nutritional value—albeit low. I showered. I applied makeup.

Then I visited the Girl.

While she slept, the wonderful, fabulous hospice medical team ran tests, watched over her, cared for her. They stabilized her meds, fed, watered, and washed her. And on the fifth day, she rallied.

Yep. Just in time for Christmas.

She was thrilled. But it wasn’t exactly what she’d envisaged. Our traditional Christmas with family didn’t eventuate. The seventy-five dishes of foods I would normally prepare (simply because I can) never got made. The Chukker-boy and family didn’t arrive. It was me and the Girl. We had a hospice prepared Christmas dinner. We ate to the sound of her CD player pounding out Snoopy’s Christmas for the 76,830,654th time.

And at the end of Christmas day 2013, exhausted and fed, she thanked the doctor for the presents I bought her, thanked the nurses for the TV I bought her, then settled down to sleep.

Now she’s home. It’s like we’ve been in a time bubble. She wants Christmas. She wants to paint Christmas, eat Christmas, live Christmas. She wants the whole Christmas experience from go to whoa, and she’s not taking “No” for an answer.

Me? I’m over it. She can have her Christmas CDs, her decorations. After that, I’m putting my foot down. Christmas is gone. There’s another one at the end of this year.

In the meantime there’s a birthday in six months. For once, I’m looking forward to it.

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