Gonna Be a Bright, Bright, Sunshiney Day

My GirlI’m delighted to report that every day since her latest spell in the hospital, my Girl’s abscessed needle sites have improved and she’s gotten better and better. Of course, there are pros and cons to moving forward. Aren’t there always? However:

On the One Hand:She’s singing again. As I write this, she’s very appropriately bellowing out Tom Petty’s, I Won’t Back Down.

She can tell me when she’s in pain. That means I can do something meaningful about it. No guesswork … or at least, minimal guesswork.

She smiles. I cannot express how wonderful that is.

She can hold her sipper cup, and drink by herself. She has tremors, but she can get the spout to her mouth, and finish an entire drink without help. A far cry from having to administer liquids by dropper or straw.

With an acceptable level of spatter and particulate spread, she can eat a sandwich. It requires some damage control, and a change of bedding, but it’s forward momentum.

She’s meowing. Yes, when my girl is happy, she doesn’t purr, she meows. It’s gorgeous.

I can get her into her wheelchair and move her short distances.

As a result of the wheelchair reintroduction, she’s going to her program. She’s only attending for a couple of hours a day, but it’s another step forward.

I can toilet her. The wheelchair also means I can get her to the toilet, and that reduces …well, cleanup.

All the above brings us close to the return of normality. It does not always go according to plan.

The toileting routine, for example. It’s not perfect. But it goes like this:

I begin by swivelling the Girl in her bed, with her legs over the edge. Next, I sit her up, let her get her bearings. After being horizontal for so long, her brain isn’t used to be vertical. It takes a while to allow her to adjust.

When she’s ready, I crouch low, my arms around her (avoiding the wound sites), her arms around me, and I lift. We quickly swivel her on her feet, and sit her in her waiting wheelchair.

I wheel her to the bathroom. Experience has taught me to take great care not to whack her elbows on the doorframe. (The whacking, however gentle, produces screams that are often far out of proportion to the whack)

At the toilet, I take the footplates off the chair, place a pillow on back of the toilet, release the tabs on the diaper, and repeat the stand and swivel. To return, we repeat the process in reverse.

Sometimes it goes badly. Like this morning.

We do the swivel from the bed. She’s a little unsure, so there’s a squeal. I reassure her that I’m holding her, that I won’t let her go. She gets to her feet, swivels easily to the waiting wheelchair.

We do the bathroom run, sans elbow-whacking. I’ve even remembered to take off her socks so she doesn’t slip on the floor—also learnt from previous ear-shattering experience.

The return is not so great. Despite the socklessness, she swivels, loses her confidence. I have both arms around her, but she’s screaming, “Fall, fall.” I’m saying, “I’ve got you. You won’t fall.”

She doesn’t believe me. She screams at the top of her lungs. Her mouth just happens to be two centimetres from my left ear. She screams again. I yell, “I said I’ve got you. Now turn! TURN!”

She’s not turning. She’s screaming, and now she’s gone “boneless.” Still yowling at a glass-shattering pitch, she slithers out of my grasp, and slides to the floor. It’s like trying to hold a 36kg beach ball wrapped in cellophane. Go ahead, picture that.

I’m still yelling, “I’ve got you, I’ve got you!” Which patently isn’t true. We’re now wedged between the wheelchair and the toilet. It’s a gap of around one square meter. If that. She’s flopped against the wheelchair with her legs between my feet.

I can’t move the chair. It has to be positioned to take her. I can’t turn around. Getting her up off the floor and back into the chair necessitates a dead-lift of 36kg, straight up. She’s still screaming. I almost get her there, but she arches her back and goes down again. I drag her up, screaming reassuring words at her. This time, I poise her on the edge of the chair but she’s kicking out, deliberately sliding back off the edge of the chair so she can make her point that I’m not in control of this situation, and proving that she can slip back onto the floor anytime. I grip her upper arms, and round the chair, and just as she begins to slide, I wrench her back up onto the seat. I quickly wrap her naps, and a blanket around her, reaffix the footplates, wheel her back to her room. Just as I tuck her back into bed, she looks up at me, and says, “Go to the video store?”

I’m like, “Yeah, sure, that’s really gonna happen.”

Our house now resounds with the words, “Want hot chocolate. Want Smurfs. Go toilet.” It’s accompanied by a loving but hollered reply of, “Gimme a break! I’ve only got two hands!”

I hate to think what the neighbours think.

Baby steps, I keep telling myself. We are getting there. I know it won’t last. I know it’ll only take one minor setback to go back to where we’ve been.

But believe it or now, I’m savouring what we’ve got, while we’ve got it.

And getting help for toileting.

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Filed under Parentlng alone, Terminal Illness

Eenie Meenie Miney Mo

Contrary to popular belief, I have not run off with a Columbian drug lord to live a life of luxury and danger on the proceeds of his illicit operations.

Neither have I locked myself away with some obscure order of nuns under a strict vow of silence.

I’m still here. I’ve been busy. Let me tell you about it.

In our last exciting and apparently (according to one reader) lengthy episode, my Girl came home from the hospice with an infection in her shoulder. To say it was unexpected would be like saying, “Wow, who knew autumn would turn up straight after summer?”

She’s been home only one night from the hospice. I give her pain medication. It doesn’t help.

The next morning, my Girl has a lump the size of an emerging tennis ball on the upper part of her shoulder blade. Worse still, her blood sugars have soared to the point where the meter gives a readout of, “Man, are you ever in trouble.” She’s clearly unwell.

I call my doctor. She makes out a prescription for more antibiotics. I call the hospice. The nurse zooms straight to our door. This is serious. I speak to the hospice doctor. Although the hospice would normally advocate non-intervention, she tells me the infection is reversible, and they advise me to send her straight to hospital.

When we arrive, we’re whisked straight through the Emergency Room and into the Acute Unit, all thanks to the calls made by the hospice doctor. The ADU nurse takes my Girl’s blood sugars, temperature, and vitals. She tells me that she’s seen her notes, and gently advises me that one option is to heavily medicate my Girl, and let her go.

It feels like a good option. She could slip away in her sleep. Out of the pain and into the hands of whoever waits on the other side. I swallow back the tears, and accept that it may be my only option.

Boy, am I ever wrong.

There’s a bed on Ward 5. I’m disappointed. We’re practically on a first-name basis with the staff on every ward except 5, and Maternity. I suspect one day we’ll do a stint in Maternity, but I can’t imagine the circumstances. I’m doubly disappointed to find she’s sharing a room with three others: two middle-aged women, and an anorexic girl with a 24-hour watch on her. The nurse tells me the 24-hour watch will benefit my Girl because they can keep an eye on her as well. All I can do now is go home and rest.

The next day, I manage to catch the doctors doing their rounds. We have three choices. Who knew we’d have that many?

They can: a) put my Girl under a general anaesthetic, and cut out the abscess. That means a couple of inches across, at least an inch down. It won’t be so much a wound as an excavation site. I’m not keen.

Then there’s option,( b) open it up under a local anaesthetic on the ward. According to the doctors, this would be excruciatingly painful. Again, I’m not keen.

After that, there’s option (c) do nothing, and let her go.

Everyone tells me there’s no “right” decision. They look to me. The stress of the decision is agonizing. When the phlebotomist arrives to take blood, I tell her she’s not putting any more holes in my girl, because that’s how we got into this position in the first place. I tell her to take her cart and go! She tells me she has to take blood for the operation. I tell her there isn’t going to be any operation. She argues. I make her regret arguing. Then make a mental note to apologize when I next see her because she’s only doing her job.

I speak to the Palliative doctor, the surgeon, the nurses, the hospice doctor. They all reiterate that there’s no “right” decision. They tell me they wouldn’t want to be in my shoes. It doesn’t help. Hell, I don’t want to be in my shoes.

Exhausted, I go home and call up my Warrior legion of “Outraged and indignant” supporters. They give their opinions, adding that it’s not an easy decision, and throw in a little outraged indignation for relief.

So far: The anaesthetist is reluctant, the registrar surgeon is on the fence, the ward doctor is gunning for option (a), three nurses say they’d hate to have such decision, the diabetes nurse tells me to follow my gut, Chookie Lou tells me to do whatever feels right, my Warrior Legion offers a variety of angles and possible outcomes, the hospice still feel it’s reversible and that something should be done soon.

I’m confused and even more exhausted. I have zero medical training. How am I supposed to make these decisions? I call the Palliative doctor. I tell her I don’t want them to put her under a general anaesthetic. I tell her my Girl would never survive it. She tends to agree. In the meantime, they prescribe oral antibiotics and keep her comfortable.

Then a break! The consultant surgeon wafts in with an entourage of several young doctors. He looks at my Girl, inspects her shoulder, does a General Custer hand signal for us to follow. We squeeze into a tiny office and he gives his verdict:

He would not put her under a general anaesthetic. (I heave a sigh of relief). Neither would he give her a local. That would be excruciating. He tells the registrar surgeon that the best option is to spray-freeze the spot, nick it with a scalpel, open the wound up, and let it drain.

I’m thrilled. It’s quick, and it’s simple. What’s more, it’s the best outcome. Especially when two days later, a second abscess emerges on the other shoulder. I’m horrified, but at least we have a way forward.

My Girl is moved to another ward. In this room is a chatty woman my age, an elderly lady, and another anorexic girl with a 24-hour watch. I’m spending around 5 or 6 hours a day in the ward, so it’s to my delight, that I find these other three patients are keeping an eye on my girl when I’m not there.

Slowly, but surely, my Girl responds to the antibiotics. She’s spent twelve days in the hospital, so I’m completely thrilled when they tell me she can come home.

The wounds are dressed daily and doing well. She’s come off the syringe driver, leaving her alert and active enough to go back to her program for a couple of hours a day.

She’s almost back to being my beautiful Girl again. Last week, I spoke to my counsellor. I regaled the events above, all the trials and tribulations, the stress, and the horror. And you know what she said?

“You know, it was never your decision.”

I’m like, “What? They asked me what I wanted!”

Yep. Turns out, that’s true. The medical staff might have asked me, but they never expected me to make the decision. And frankly, if I’d made the wrong decision (in their opinion), they could have overturned it. What they were seeking was my buy-in; my agreement to the route going forward.

Who knew? Because I certainly didn’t.

So take heart from a spot of advice from me: If you’re a carer, a mother, or anyone with someone’s else’s life in your hands, you can make a difference with your opinion, you can put your two-cents-worth in. But the final decision is not yours to make.

I took a lot of comfort knowing that. I think you would, too.

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Filed under Coming to the End, Parentlng alone, Terminal Illness

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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Filed under Parentlng alone, The Early Days, The Joy of Living With a Disabled Child

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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And So This Is Hospital …

My Baby Girl

My Baby Girl


I began writing this a few days ago. I didn’t finish. I needed to.

So here it is …

Thursday, I busted my Girl out of hospital. It was a raid worthy of a crack military team. Okay, maybe not that worthy, but it was close.

She was in there because her blood sugars had been hovering at a staggering 30 mmol/l. In the American system that’s 540 mg/dl. In any system, that’s ridiculous.

The doctors immediately put her on an insulin drip and put her on a ward.

Now, let me paint you a picture. Hospitals are the places you go to get better. They are not the places you go to get comfortable. They are not places of peace. Now that I’ve got that out there, you’ll begin to understand where I’m coming from on this.

My Girl starts out in Observation. They need to get a grip on her blood sugars then transfer her to a ward. I wait with her for four hours. At 5:30 p.m. I reluctantly leave.

I return on Day Two to find her in a ward. She’s sharing a room with three others. All women. All over 80 years in age—a couple maybe over 90. I suspect my Girl is in this particular room because it offers her some company. Although not from the old dear opposite in Bed 1. She mostly sleeps. Every now and then she lets out a wail. It’s disconcerting. I want to nip across and comfort her. I’d probably make things worse.

I’m just getting settled, comforting my Girl, when a nurse sweeps in. The old dear diagonally opposite in Bed 2 informs the nurse she’s going home today. The nurse tells her gently that she’s not going home, that’s she’s staying in the hospital, and then sweeps out. Next to us, the third old dear in Bed 3 gets up and paddles off out of the room. The nurse sweeps back in. Bed 2 tells her she’s going home today and Bed 1 wails in pain. The nurse administers medication to Bed 1 and tells Bed 2 she’s not going home. Bed 3 paddles back into the room to advise the nurse of the horror she’s just discovered—the doors are locked and she can’t get out. The nurse gently guides her back to her bed, telling her not to worry and that she’ll check the door.

She prepares to sweep out again, and checks my girl’s blood sugars. They’re still raging. Bed 3 gets up and paddles off down the corridor again. The nurse tells me the doors are locked, even at visiting time because if they weren’t, they’d lose 75% of their patients within the first five minutes.

I sit with my Girl for a total of five hours. Over this time, the scene above is played out over and over. The Girl’s blood sugars persist in the late 30’s. By the end of the day, Bed 3 is still paddling around and around, Bed 1 is sleeping and wailing, Bed 2 can’t understand why she isn’t at home. I’m exhausted, my Girl is sleeping, so I leave.

On Day Three I catch the doctors doing their rounds. Amongst them is the liver specialist. He tells me nothing I don’t already know. He tells me the girl’s insulin-resistance is puzzling.

Really? I mean, Really?

I request the palliative team’s involvement and settle back to my vigil. My Girl is mostly sleeping and I have so much to catch up on back home. The washing has piled up, the floors need cleaning, the dog has forgotten who I am. I kiss my Girl and head home.

On Day Four I sit with my Girl for another five hours. I bring my own lunch but it’s costing me a fortune in parking. I request some kind of parking concession since I’m here feeding, washing, toileting my Girl. The nursing staff put in a request. They advise me it takes at least 24 hours.

On Day Five, I arrive at the hospital. I cannot say how sick I am of hospitals. I hit the door bell. As the doors swing open, I walk in passing Bed 3 who’s walking out. At the nurses’ station, I report another attempted escape. They dispatch two nurses to retrieve Bed 3 and catch her at the stairs. She’s gently guided back to the room.

When I get there, my Girl is gone.

My first reaction is panic. Then I realize they would have informed me if something dire had happened. I’m told she’s had a restless night and she’s been moved to another room.

There’s good news, and bad. My Girl’s blood sugars have dropped. I’m ecstatic! They’re down to a sensible 9.2.

But now her abdomen is distended from sitting in a bed all this time. She’s retaining water and she’s in pain. The doctors are doing tests. They’ll get to the bottom of it. That’s their job. They test her blood, her urine, her stools. They put her through an x-ray, a CT scan, an ultrasound. They’ve already put her through every test known to man, and I suspect they’ll put her through a car-wash next.

Now she looks even sicker than she was when she went in. Her face is puffy, her stomach swollen. I go home depressed and feeling as though I’ve let her down.

I lie in bed that night, worrying. All I can see is her face. She’s in pain, she’s unhappy. Then the thought hits me—she has to come home. I don’t care if I have to fight them. I’ll take all responsibility. My Girl doesn’t want to be in the hospital. She wants to be home with Boo Boo her bunny, and Lilly Lion, and Dead Cat. She wants to be in her room, in her bed with her toys and her Smurfs and her music. She needs to be at home with her mummy.

The next morning I call and speak to her nurse on duty. I tell her I’m coming to get my Girl. The nurse says she’ll have to tell the consultant. I tell her that’s fine, tell whoever, but I’m taking my girl home.

As soon as I’m dressed and ready, I storm in there. The door opens and I burst in, passing Bed 3 who’s on her way out. I inform the nurse that Bed 3 has escaped and demand to see the consultant. I’m told that the parking concession has arrived, but it’s can’t be applied retrospectively. I say I don’t care, I won’t need it. I’m taking my Girl home.

Then the consultant appears. I’m ready for a fight. I know my rights. I’m prepared to thump my fist on the desk and demand my Girl’s release. But the consultant is in the process of completing the discharge papers. She tells me she thinks it’s the right decision. The charge nurse appears, telling me she agrees. We order an ambulance, and pack the girl’s belongings.

She’s coming home. She’s coming home and I couldn’t be happier.

Yes, it’ll be tough. Yes, it’ll be terrifying. But it’s all about quality of life.

So here are a few rules I picked up along the way:

1. Do not ask the doctors if there’s anything else they can do. They’ll find something.
2. Sometimes, one more test is one test too many.
3. If you are the main caregiver for a terminally ill person, it doesn’t matter if you don’t have a title or initials around your name or a plaque on the wall, you probably know more than about your terminally ill loved one than anyone else.
4. There is no cure—there’s only comfort.
5. It really is about quality of life.
6. And finally, there is nothing more important than being surrounded by love, good intentions, and home.

In my next blog I’ll address caring for the terminally ill at home. It’s more incredible, more frightening, more fulfilling, and sometimes more hilarious than you could ever guess …

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More Stress, Anyone?

The Candidate's DaughterI have a nightmare.

I’m sitting at the Antiques Roadshow and in my hand, I have a small vase. The vase is narrow, with two tiny handles on the sides, and a hallmark underneath that I suspect means it’s worth something.

I’m horribly nervous. The more nervous I get, the more I fidget. Finally, the vase expert is almost ready to see me. He tells me he’ll be over shortly. I’m picking up the vase, wondering at its value. I’m turning it, turning it until…

… one of the little handles snaps off.

I’m horrified. I dig a tube of superglue out of my bag and carefully glue the handle back on. I’m devastated because it’ll have lost value, but hopefully not too much. After all, it has those hallmarks. That means it could still have some value. Again, I pick up the vase to check them. But in doing so, the lip of the vase hits the table and a tiny chip flakes off.

Dammit!

Again, I’m out with the superglue. I carefully glue the chip back into place and set the vase on the table. I must not touch the damn thing again. I reach across, just to position it once more, to find that a drop of glue has found its way onto the table and the vase is stuck fast. I wriggle it, tug it, then wrench it loose. Suddenly, the top of the vase is in my hand but the base is still stuck to the table.

That’s the nightmare. But it feels like it’s coming true. And it’s all down to my current stress levels.

Let me explain.

We haven’t been sleeping. The Girl has had entire nights without sleep. That goes for me, too. The dog has also complained, but I figure he can sleep at any other time and still refuses to help out with the housework, so he doesn’t really count.

I took the Girl to the dentist. I knew she had an enormous cavity, but now we’re worried it’ll abscess and we’ll be in emergency territory, so it’s time to do something about it. I have an appointment with the hospital dental department next Tuesday. On Wednesday I’m taking my mother to her eye specialist for her glaucoma. On the same day I have an appointment with my counselor (thank God). Later in the week I have appointments with the Girl’s liver specialist and the diabetes clinic.

So what better time to organize a promotion on my book, The Candidate’s Daughter.

That’s right, there’s a new promotional opportunity in town. It’s called the Kindle Countdown and it gives me the opportunity to discount my book in the US and the UK, and drive myself completely around the twist at the same time.

So I book the promotion in my Amazon page, selecting dates in the third week of November, then book and pay for four advertising slots with various advertisers. I also submit the details to a top advertising organization called Bookbub. Now, if you want results, Bookbub is the place to go. Submitting to them is like sitting at the Antiques Roadshow with that vase in your hand. Having Bookbub select a book for advertising is the equivalent of having the vase expert indicate that he’s on his way over.

And the nightmare begins.

Bookbub send me an email to say they’ve accepted the book, but not for the dates I wanted. They are the pinnacle of e-book advertising. I’ve heard of books reaching 65,000 downloads on the strength of their advertising. That snap you just heard was the handle of the vase coming off.

I accept their new dates. They’ll promote my book from November 14th to November 17th, so I confirm. Now I’m scrambling; desperate to change the dates with the other advertisers. That’s me gluing the handle back on the vase.

I think I’m just about done. I’m just sitting back and taking a deep breath, when I notice the price of my book has inexplicably changed from $2.99 to $3.77. I try to change it back, but the pricing is greyed out and I can’t. I email Amazon. They tell me it’s to do with territories. I then realize the book is only available at the promotional price in the UK and the US. That’s fine. Everything is in place. A couple of advertisers can’t accommodate me, and one can at a higher price.

At last, I can relax. I have to. The stress from all this has triggered a high-pitched ringing in my head. I need to step back and let the promotion run its course. I have too many other things going on in my life.

But I can’t help myself. I just have to check I have the dates right. I change them to make sure the correct price will be in operation when the promotion starts. This is the equivalent of tipping the vase over to check the hallmarks. When I come back later to check that everything is in place, I see my book isn’t live, it’s a draft. The chip is now lying on the table. I upload the file again. I know I can’t check it for another twelve hours, but I don’t know what else to do. This is me gluing the chip back on. It’s a mess, but I have no other choice. I go back to check the status to discover the publication dates have changed.

What!

The damn vase is now stuck to the table because I can’t change anything for another twelve hours!

Aaarrgghhh!

I write to Amazon. I’m sending them crazy. I’m sending myself crazy. My counselor tells me she’s glad I’ve got something else in my life. I’m wishing I didn’t. I make a note to tell her I’m way crazier than she thinks.

But here’s the thing. I don’t think I’m alone in this. I think it’s a symptom of someone facing the inevitable when caring for a terminally ill loved one, and trying to keep control of something.

Next week, beginning November 14th is my book promotion. I discovered that the amazing Karen Dionne is also promoting her thriller, Boiling Point. It’s a fabulous read. It’s the perfect time to grab it along with The Candidate’s Daughter. I suggest you get both.

And wish us luck. I, at least, am going to need it.

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When You Hit Those Rocks … Yet Again

There'll always be, for you and me...

There’ll always be, for you and me…

Yes, I know – this post is really late. The reason has nothing to do with apathy or laziness. I wish that were the case. It’s all to do with energy levels. And I wish I had some.

As some of you may have noted, I put a note on Facebook a week or two back, advising my friends that my Girl had slipped into a coma. I can’t tell you how much the love and support from all of you meant to me. So, here’s the story behind that post:

My sister Chookie Lou arrived on the Thursday. We figured that was an auspicious day to invite the entire family over to. Yes, that’s right, I don’t have enough stress in my life so I feel it necessary to create more.

I admit that up until then, I’d been lax. Despite the Girl repeatedly reminding me, here it was mid October and I still hadn’t put up the Christmas tree. So Thursday afternoon, I spent a half hour wrenching fake Christmas tree branches into position and decorating them while the roast cooked. At 4 p.m., Chookie Lou went to pick up Mum, but while she was gone, I got a call from the Girl’s program to say the Girl wasn’t well, so as soon as she came in the door, I showered her and put her to bed.

I thought she’d picked up a bug, so I didn’t give her dinner. Instead, I gave her water to keep her fluids up, and at 9 p.m., after everyone was gone, I went to tuck her in and give her more water. She looked dazed and floppy. When I asked her if she wanted anything, she didn’t respond. So I called an ambulance.

Chookie Lou and I followed the ambulance to Accident and Emergency at North Shore hospital. By the time we got there, the girl was unconscious, only responding to discomfort.

I couldn’t believe it. Seriously, she did not look that bad. I kept telling Chookie, “She didn’t look this bad.” She agreed, but it made no difference. In what seemed like a matter of moments, my Girl had become seriously ill.

We sat with her, going through countless scenarios of what could have happened had I not called the ambulance when I did, when a nurse swept in and took our details. I asked how long the wait was. She told me they were incredibly busy.

“Incredibly busy” isn’t good. I once sat for eleven hours in Accident and Emergency. I told her this was not my first choice. She took one look at the Girl, one look at me, and said, “I have a friend with a disabled boy. She never brings him in unnecessarily either. I’m going to get the doctor.”

We heaved a sigh of relief and gratitude. Two minutes later, the Girl was surrounded by doctors and nursing staff. They X-rayed her, took a Cat scan, put in a catheter, and told me she was in a very bad way. How far did I want them to go to resuscitate her? Did I want them to operate? I told them I wanted nothing invasive, nothing traumatic. Yes, just let her go quietly.

They told me not to worry, I’d made a good decision. I told them it didn’t feel that way. I told them that I when she was stable enough, I wanted to take her home. I didn’t want her dying in a hospital bed. I wanted her to be among her toys and in her beautiful room with all her beautiful things around her. I wanted her to be in a place that was comforting and familiar. They told me it would be hard work, that I’d need support. I told them that’s what she’d want. That’s what I’d want. So at 2 a.m. Chookie Lou and I left my Girl in the A&E, and reluctantly went home.

I woke early the next morning, wondering where I’d find the strength for the next few weeks, months, years, without my Girl. I wandered into her room, looking at all her artwork on her walls, at her beloved toys, at her life here with me. I had no idea how I could let it go. It was too soon. I wanted to call up the hospital and tell them to do everything, everything they could to keep her with me. But at the end of the day, I knew I was only postponing the inevitable. I would only have to go through this all over again. And I didn’t want my Girl to suffer.

At 9:30 a.m. Chookie Lou and I went back to the hospital. My Girl had been moved to Ward 10. The very top of the hospital, in her own room. I knew she’d like that.

But as we entered her room, to our astonishment, the Girl was awake.

“She’s conscious,” I said.

“Yes,” the nurse told me. “But she’s very weak.”

I took my Girl’s hand and said, “Hello, Baby, you gave us a fright.”

She gazed up at me and said, “Eeeeeecccks Boooooox Gaaaaaammmes.”

“Really? I mean, really? You come out of a coma and you’re asking for games?”

“P-p-preeeessssents,” she said.

“This,” I told Chookie Lou, “is what brings her back from the brink. X-Box games and presents.”

“She’ll want Christmas next,” Chookie told me.

“Chhhrrrriiiistmaaaas,” said the Girl as she flopped exhausted back onto the bed.

“Dear God,” I said. “I can’t believe it.”

“You know what?” said Chookie. “I think I can.”

This is the fourth time this year that we’ve played out this scene. Not once has the emotion or the stress or the trauma been any less than the rest. Each and every time, we prepare for the worst. I have it on good authority that this is not unusual; that although people believe that the last months or years of a terminally ill person’s life are a steady decline to the end, it rarely happens that way.

What really happens is a series of traumatic, life-stopping, brain-numbing races to the hospital. It’s a series of heart-breaking realizations, one after the next, after the next, that this is the one – the final one; that there’s no going back this time. What really happens is you keep riding this rollercoaster of constant peaks and crashes. You got through the last one and now there’s this one. If you get through this, there’ll be another. But you never know which one will be the last. You just hang on and keep rolling with it, knowing that somewhere around one of these bends is the end of the line.

I know I’ve said this before, but please think about this: If you know someone who’s caring for a terminally ill loved one, chances are this is what they’re going through. It’s a tiring, traumatic job, and there’s rarely room for anything else.

So here’s my plea: don’t wait. Call them up. Tell them you’re thinking of them. Cook them a meal, send them a card, make them feel they’re not alone.

Because this is a job that no one signs up for. It’s a job with set hours of 24/7. It’s a job with no perks, no set holidays, and there’s only one way to sign off.

And they do it all for love.

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I Don’t Understand, and I Won’t Remember, So I’m Not Listening.

My Bed

My Bed

In my day-to-day life, I deal with a Girl who listens and remembers, but doesn’t understand; a mother who listens and understands, but doesn’t remember; and a dog that remembers and understands, but doesn’t listen.

I swear, when I’m old and gray I’m hanging a sign around my neck that says, “Unless you’re incredibly interesting or telling me how much you loved my book, I don’t understand, and I won’t remember, so I’m not listening.”

I know, right? It’s a proven formula.

In the meantime, I have other issues to deal with. If you’ve followed me on Facebook lately, you’ll know that the most interesting conversation I can offer revolves around how much sleep I’ve had—or rather, how much I haven’t had.

The Girl goes through periods where her entire internal engine seems to seize up. I’m not going into details here, suffice to say that at times her care management becomes incredibly challenging. Take Friday night. She had dreadful diarrhea. I had care support in overnight, but even so, I didn’t get to bed until 11 pm. That was okay. I got some sleep.

Saturday turned into the nightmare of Friday past. The Girl had stomach pains, ear ache, sore feet.

At 10 pm I got up and gave her Paracetamol with Codeine and went back to bed.

At midnight I got up because she was moaning. She seemed fine, so I tucked her down.

At 2 pm, she woke me up singing—yes, singing. I yelled at her to “Shut up the singing and go to sleep. Mummy’s turning into a grizzly bear and once that happens, it’s all downhill from there.” She quit the singing and chatted to Lilly Lion and Dead Cat for another hour.

At 4:30 am, we were both still awake, only the Codeine was wearing off and she began to wail. I got up, gave her Paracetamol liquid, took her to the toilet, and went back to bed.

At 5 am I got up because it was pointless trying to sleep.

At 6:30 am she fell asleep and stayed that way until 9 am when I woke her.

I had a repeat performance on Sunday, and, to a lesser extent, again on Monday. In desperation I called the Hospice community nurses and asked for help. Two nurses came straight out. They assured me I was not being “a big sookie-bubba who was asking for way more than she deserved” (Not the way I posed it, but the way I felt). They told me I was doing fantastically well, and that it’s dreadfully hard with someone you can communicate with, let alone someone you can’t.

The next day I spoke to my mother. She told me to go and have my hair done and get a little pampering and that she’d pay for it. (I did not let her forget it)

I have people tell me they could not lead my life. They tell me they could not do what I do. But here’s the thing…

I’m so utterly, utterly grateful.

I’m on a miniscule income and I make sure I cope on it. But you know what? I am so frikkin’ grateful for that income, I can’t even tell you. There are countries around the world where people in my position simply have to do the best they can. I’m sure they, or their loved ones (maybe both) live tough lives then die early.

I’m grateful for the community nurses at the Hospice who keep a constant check on how we’re tracking. I’m grateful that they know what I’m going through and have access to the resources to help me. I’m grateful for Sasha, my wonderful counsellor, who tells me I’m doing great, and then sits for 55 out of our 60 minutes to listen to me drivel on about how my book is going.

I’m grateful for my sister who calls me and tells me how much she loves me, and gives me more support and love than I ever knew a sister could—and that’s saying something.

I’m grateful for all my friends wherever they are. I’ve developed friendships all over the world through my blog and my writing. I have the most spectacular bunch of people spread across America, Britain, Australia, and a million other places who cheer me on and send their wishes, their love and their support. I cannot say how much this means. (I even had someone in Mongolia who dropped by my blog. I’m still wondering what they made of it)

And yes, I’m grateful for a mother who may not remember, but who reaches out when I need it.

I’m grateful for a Girl who’s given me more joy than anyone could know.

The dog—I’m not so sure about …

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