Monthly Archives: February 2014

Slap On Your Warpaint – We Got Us a Battle

Beach 007Picked my Girl up from the hospice yesterday. Got home. Dredged out my war paint. Slapped a load on, gathered up my ammo, went on the war-path. Someone was going to pay, and they’d pay dear.

Let me back up a bit, give you the backstory.

Then let me tell you why, after all the hoopla, I did nothing.

My Girl isn’t so good. You probably know that by now. But lately she’s really been ramping down. So when I was offered a week’s respite by the hospice, even though we weren’t due, I grabbed it. I have no idea how long this will go on. Whatever date that sunset has stamped on it, I have to keep going.

At ten-thirty yesterday morning, I jump in the car, pick up a few groceries on the way, then drive straight to the hospice to fetch my Girl. She’s been there a whole week. It feels like a year. It also feels like ten minutes. This has been a long, tiring journey. For both of us. I can’t wait to see her. I’ve also been dreading it because I’m back in full-care-mode. But that’s all okay.

Until I walk into the room, that is.

She’s lying there with her hair in the pretty pink clips I got her. But she’s not my Girl. Her cheeks are hollow, her hair is sparse. It’s as though someone has sneaked in while I wasn’t there, and stolen my beautiful Girl. All I have left is a hollowed-out shell. I’m shaken.

The nurse doesn’t seem to notice the iced-over expression on my face. Instead of making a scene, I swallow back the tears, stiffen my upper lip, and say nothing.

All my Girl’s bags are packed, her meds are ready and she’s set to come home. The nurse tells me she’s been eating well, she’s been chatting, although they did notice that when they showered her first thing, clumps of her hair were falling out.

I don’t need her to tell me that clumps of hair are falling out. I can see her scalp through the strands.

When I fold back the covers, her stomach is distended again. “Yes,” the nurse tells me, “she seems to be bloating up again.”

“Maybe she’s been overeating,” I tell her pointedly. “If it’s there, she’ll just keep eating.”

The nurse doesn’t seem to have spotted the tension in my voice. She happily goes on to tell me that, no, she didn’t have big meals, but her blood sugars are soaring, and that could be due to the infection in her shoulder from the syringe pump needle.

“A shoulder infection?”

That’s right. She now has a very nasty infection from the needle site.

“Oh! Right. Of course. Why didn’t I expect that?”

The nurse doesn’t seem to notice the stinging sarcasm that’s leeched into my tone. I’m obviously too nice. (Maybe I could use anger management lessons, the ones where I manage to get angry so people know about it.)

“The shoulder looks really nasty,” the nurse tells me as she pops the meds into the bag, “but the doctors are hoping the antibiotics we’ve been treating the urinary tract infection will help clear it up.

“Oh, you’re hoping? Well, that’s good.”

Okay, so let me get this straight—I sent you my beautiful Girl who was chatty and sweet, with manageable bloods sugars, perfect skin, and a headful of silky soft hair, and after a week with you, she has a shoulder infection which, from what you’ve described, I might not want to check out while I’m sober, she has a UTI, and her bloods are screamingly high. Oh, yes, I almost forgot—and her hair’s falling out.

Yep, that’s about the size of it.

I pack her up, keep my gob shut tight. I have to go home, plan and execute the perfect response. Someone will hear about this. And they will hear in bold, anger-managed terms.

When I get her home, the wound on her shoulder is oozing. I still don’t look at it. What’s the point? I’m giving her antibiotics. I can’t do anything else. With the help of one of my *Ladies-of-the-Morning, I get my Girl into bed—ensuring there’s no pressure on the shoulder—I change her diaper, and give her a drink.
Next I call the first of my “outraged and indignant” supporters. I tell him the tale. I go into detail about the UTI, the shoulder, the hollowed-out cheeks, the blood sugars. I tell him I’m outraged. I suspect he guessed.

“Bloody hell!” he says. “What did they do to her? How could they send her home that way?”

I knew it! I knew I was right to be outraged and indignant. But I’ve still got a seed of doubt fluttering about in my brain. The remaining members of my “outraged supporters” are absent, so I call my counsellor. I tell her. I get into detail on the UTI, the shoulder, the…oh, you know, the whole lot. I elaborate on my outrage, then burst into tears. Because I can.

There’s a moment’s silence on the line. I don’t feel a bout of outraged indignation coming my way. I’m beginning to think she’s not on my side, that she’s siding with the hospice. Instead, she tells me the truth.

The Truth:

My girl is not getting better. She’s not going to get better. She will get worse.

My girl’s immune system is so weak, that anything, anything can be the difference between her life and her death. An unthinking visitor with a simple sniffle could kill her. People who are dying lose the ability to fight the slightest health issues we take for granted. For the terminally ill at end-of-life, we have to accept some facts:

There is no fix.

Bed-sores don’t heal.

Wound sites from operations get worse.

Hair falls out.

Infections happen no matter where the patient is—home, hospital, wherever.

Sometimes, not getting better is the best you get.

We live in a society where we expect medication to fix things, make illness go away. We watch movies where families sit around watching on as the loved one slips comfortably away with a simpering smile on her lips. Don’t believe me? Watch My Sister’s Keeper, then ask a hospice nurse to tell you how close to reality that is.

Reality is a loved one who dies long after everything has been stripped away. Reality is being an on-the-job-trained carer managing bowel movements, and open wounds that ooze pus and blood alternately. Reality is the loved one passing away in that very moment the loving and constantly-attendant carer nips out to the toilet, only to return to find their loved one, deceased and covered in vomit or blood or feces, and that’s the image they’re left with, along with the cleanup.

We’re not a society that learns about the reality of death. We don’t like to know. For the staff of a hospice, it’s real, and all of the above happens. They go to extreme lengths to retain a patient’s dignity, to keep them comfortable, to allow them to pass without pain. Doesn’t always happen. But hospice staff don’t sign on for the money and the perks.

Turns out that while my Girl was in the hospice, that infection was spotted the instant it arose. They checked it four-hourly, had two doctors attend to it, they changed the site of the needle, checked her blood sugars, fed her, showered her, kept her dignity.

Yes, I was right to be outraged. It’s my job.

But sometimes my job simply isn’t enough.

*Please note that while I’m privileged to have care workers who come in the mornings, they are euphemistically referred to in our house as our Ladies-of-the-Morning. Conversely, the night-watch are our Ladies-of-the-Night. Not to be confused with the “other” Ladies-of-the-Night. Just in case you…wondered.

**Also note, the headful of silky hair was probably less than a headful…Okay, was definitley way less than. Emotive language in use here.

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The Then and the Now.

Dead Cat

Dead Cat

Some years ago, I had to attend a series of chem. labs to complete the practical requirement of my extramural course: Organic Chemistry:101.

Yes, you read that correctly—Chemistry! Let me tell you, it takes a special kind of stupid to do any kind of Chemistry by correspondence. At the time I was raising two children on my own, working a part-time job, and furthering my education with extramural study in Chemistry, Biology, Maths and Physics. That’s no walk in the park. I look back now and wonder how the hell I ever did it. It just shows that with a good belt of determination, and just the right mix of insanity, you too can engineer your own near-burnout experience.

Fortunately, I still had enough youth on my side to get me through the pain. Unfortunately, that youth didn’t always serve me so well.

So there I was, on campus, living the dream of the returning student, soaking up university life and adding another string to my bow so I could leap up that corporate ladder (to mix metaphors), when one evening, after a particularly gruelling day of labs during which I found myself reaching bare-handed to catch some dripping sulphuric acid so it wouldn’t mark the bench (this was about the time I discovered chemistry wasn’t for me), I was sitting in the common room and enjoying the company of my peers. I have to admit, having left school the nanosecond I turned sixteen, I was somewhat overwhelmed, perhaps even a little intimidated, by the level of academic achievement I’d found myself in—until, that is, the moment when one of these geniuses pipes up and says, “Wanna hear a joke?”

Of course, the immediate response from the entire room is, “Yeah, go on, tell us,” and we all settle in for the impending chuckles.

So he starts, “What do you get when you throw a mental retard into—”

“—excuse me,” I interrupt, hand in the air like a kid in kindergarten, “but I think I should warn you that I have an intellectually handicapped daughter.”

A stinging silence stretches out across the room. The temperature drops a couple of degrees. The atmosphere crackles with discomfort and the almost indiscernible sounds of non-breathing. Sly glances flit around.

Otherwise, nothing—maybe crickets. Even then, I’m not sure.

And the guy continues with the joke.

As the single voice of dissension—I swallow back the lump in my throat and look around at my fellow academics for support. Heads go down. A throat is cleared. A few uncomfortable sideways glances flick my way.

I’m mortified, humiliated. My heart flips into double-time while my face blooms scarlet.

So, you know what I did?

Nothing.

That’s right. I sat there feeling a thousand tiny needles prickling my skin as the pain of fifteen years of battling crappy attitudes and off-colour jokes, and imbeciles who never think comes flooding back to haunt me. I said nothing, did nothing. There might have been a few pitying looks from those in my class. A couple of people might have been going to speak. But they didn’t.

Not one person came to my defence. Tears burned in my lower lids. I blinked them back. I had no intention of giving anyone the satisfaction of seeing me cry.

After a suitable measure of time, people relaxed, the conversation picked up as if nothing had happened, and I scuttled out of there as if I’d done something inexcusable.

I look back now and wonder what the hell was going on in my head. If this happened now, I’d throttle the guy. I’d tell him exactly what I thought of his puerile joke and his twisted sense of humour. Then at the first possible moment, I’d lay a complaint against him with the university. I’d have his sorry ass kicked so hard, he’d have graduated before he came down. He came there to learn—that’s one lesson he’d take away that he hadn’t expected.

Then I’d walk out with my head in the air.

And you know what? I am almost one zillion percent sure that every person in that common room would have told the guy what they thought, and walked with me.

So what’s the difference between between then and now? I could say that maturity has lent a hand—which is probably true.

I could say that I’m no longer intimidated by people with letters after their names and certificates on their walls—which is also true. I could say that I’m not worried what people think, that I accept that I’m weird, and that rather than bother me, I embrace it. Yeah, maybe that’s stretching it.

The truth is these days I have a swagger I didn’t used to have. I wear my role as the nurse, carer, advocate, and mother of a disabled Girl with pride. I have a level of surety about my place in the world that I didn’t have back then. It’s made me care less about what people think, and care more about what I think. But that’s only part of the picture.

It’s not just my own acceptance of what I am or who I am. It’s acceptance that’s come from my relationship with my Girl. It’s a growing acceptance of me and my Girl by our friends, by our acquaintances, by all those we come across in day-to-day life—both online and off; by the community and by society as a whole.
Once upon a time, I felt as though I was defined by my girl; that because she was “broken” that I, by association and by blood, was also looked upon as “broken.”

These days, I see myself quite differently. These days, I’m defined by my girl, but not as a victim. I’m the mother of a disabled young person. I have an enormous responsibility. I have the full responsibility for her life, for her freedom, for her dignity. She cannot control events in her life; she cannot make decisions that affect her life. That’s my job. And hell, hasn’t she got enough battles to fight?

So how did I undergo such a shift—such a mind-flip? How did I go from meek, unassuming broken Me to fist-fighting, desk-pounding, determined-to-make-my-Girl’s-life-the-best-it-can-be Me?

Lemme tell you, it’s taken some time. But I’ve been blessed.

I’ve had (and still have) friends who have trodden these very same boards, and lost their young ones way too soon. I have friends I can call on in moments of terror, or stress, or worry, or horror, or anguish. I’ve chosen my “Warrior Friends” because they’re smart and knowing and wise, but never short of a good bout of outraged indignation on my behalf at the slightest provocation.

I’ve been blessed to know the beautiful young people from my Girl’s program. These are young people society sometimes still sees as the “damaged” and the “broken.” But I’ve seen their strength. I’ve seen their courage and their love. These are young people who have friends, and loves, and lives, and sorrows and everything you and I have (or maybe don’t have). Yes, they’re different. Yes, they have challenges that you and I would crumble under—and yet, these are people who are happy and accepting of things most people wouldn’t put up with in a million years.

I’ve been privileged to know their teachers—people who show the utmost respect for those in their care. They come gladly to work with people who are physically challenged and frail and intellectually different. These teachers look upon their students as friends, as peers, as colleagues. There’s an atmosphere of mutual respect; of love, and determination to make every day count—to share in their joys and their sorrows and their everyday achievements and successes—regardless how small.

I have had the benefit of all these wonderful, fabulous, positive people in my life. I owe them more than they could ever know. And I thank them.

I look back now over my life, and realize without hesitation—that the only person within this post who was ever truly broken …

… was the guy who told that joke.

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