Category Archives: Coming to the End

Goodbye, Baby.

Me and The GirlIt’s 4 a.m. I had to write this now.

The absolute worst has happened. I knew it would eventually. Why wasn’t I ready?

After rescuing my Girl from the hospital, I took her  to the hospice. I brought in her nightdresses, her toys, her medications. It gave me time to breathe. And even though this time was officially “respite time,” I visited her regularly. At the end of nine days, she came home.

And things got harder.

Her breathing became laboured. I administered drugs I’m not qualified to administer. I did it under the hospice’s guidance. I contacted them regularly. When her condition deteriorated further still, I knew somewhere down in my heart that this time was different, that our lives were changing forever.

The outcome: I made the painful decision not to intervene in my beautiful Girl’s illness. Wherever her journey was about to take her, I would not stand in her way. What right did I have to continue extending a life of agony, a life filled with procedures and hospitals and pain?

I continued to care for her. I turned her regularly, kept her on a soft diet, kept her as stable as I could. But after only a few days, her condition deteriorated yet again, and after a distressing night, the hospice doctor and my darling nurse Claire came out, and we admitted her to the hospice.

I once promised my Girl that I’d never leave her, that no matter what, she would always come home. Sending her to the hospice felt as though I was betraying her. But standing there right then, what I had committed to in a moment of love, suddenly seemed worse.

The very first time she went into the hospice for respite, I bought her a TV with a DVD player attached. As we said our goodbyes at the end of the visit, she looked up at me, eyes full of wonder, and said, “Nu TV. Thank you nurses.” It was said with such appreciation, that I never altered that belief for her. If she thought the nurses bought her TV’s and DVD’s and whatever, who cared? It made the hospice a wonderful place to visit. Subsequently, with each stay, I’d buy her presents and wrap them up and leave them with the nurses to give to her. I hope she loved them.

This stay was different. It was always going to be different. There were no presents, few Smurf viewings. I played her music, sat by her bedside, talked to her. At the end of my Tuesday vigil, I told the hospice staff I had to leave because I had the dog at home. They told me to bring him in. I did.

The three of us sat for hours each day, listening to music, telling my girl how much I loved her. I did it because I needed to. I did it because I knew that one day soon, I would no longer have that privilege.

On Saturday, I left at  three o’clock. A little earlier than usual. As usual, I kissed my Girl goodbye, I told her that I love her “to bits.” I impressed on her that I’d be there tomorrow, that I’d never leave her. Then I packed my bag, and I left.

Almost the instant I got in the door, the phone rang. The nurses were handing over just minutes after I left, and my Girl had slipped away.

My heart is broken.

I didn’t know what people meant when they say the heart breaks. It feels as though someone has reached in and torn an enormous hole in my chest. It crushes me from the inside. This pain is physical and all-consuming. It’s a pain I wonder if I can bear.

In the past, I’ve suffered panic attacks—waking at night, desperate for time to roll back and let me have even one more moment with her. But this is something else. Over these past two years, and I guess all our lives, we’ve been hurtling towards this enormous moment, a moment that’s stood like some insurmountable wall. We’ve been headed this way, for so long now, that somewhere in my heart, I began to believe we’d never reach it. I began to think this journey, this life, however hard, was meant to just keep going, that I would walk forever with my Girl’s hand in mine.

Now, I’ve crossed that wall, that moment in time, and my Girl has stayed behind, beyond my reach. Her little hand in no longer in mine. I can’t get back over the wall, but I know she’s there, just on the other side, forever caught in the moment that was our lives together.

As I write this, my beautiful Girl is here at home with me. I can look up now and see her beautiful face, the curve of her cheek, the plump of her lips. I’ve had her here for five days. She’s dressed in her best clothes, her hair done, her favourite toys around her. I come into this room to play her music, to talk to her, kiss her, tell her how much I love her. The pain of knowing that today I have to let go is unbearable. I want to gather her up and keep her with me. After today I’ll never be able to hold her, to touch her, to brush her hair from her eyes, to lay my cheek on hers.

I know I’ll always talk to her. I know that wherever she is now, she has no pain, no procedures, no needle pricks, no worries. Her spirit has been freed from a body that bound her to this earth, that served her, but which ultimately let her down. Whereas I want her back with every fibre of my body, I would never want her to experience that pain again. All I can do now is keep our treasured times in my heart, in my memories, and yes, in this blog.

I’ve been the most privileged person I know. I’ve shared in a life that’s been unique, funny, hard, and enormously satisfying. I’ve been granted the opportunity to bathe in her light, to walk in her world, to share in a personality that’s sweet, that’s funny, that’s more loyal than anyone I know. This Girl has taught me lessons that no school, no religious leader could bring. She’s shared her life, her love, and her philosophies with me. I can’t say how honoured I am.

Eventually, I’ll turn this list of blog posts into a book. If it inspires one person to make the difficult journey we have, if it helps one person through the dark days of terminal illness, then our work here is done.

It really is the smallest things that take up the most room in your heart.

I love you, my Darling Vicky Rayner Lea. I love you to bits.

 

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Filed under Coming to the End, Terminal Illness, The Joy of Living With a Disabled Child

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

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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Filed under Christmas, Coming to the End, Grief

Another Mark on the Checklist

candidatesdaughterebook_HI_RES-1Yes, 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.

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Who Knew The End Would Be This Expensive?

An African Violet By Any Other NameMorbid as it may seem, I decided to take the bull by the horns and get at least one dreaded task out of the way – arranging the funeral. I’m doing it now for a number of reasons. First up, when the time rolls around, and I know this will happen all too quickly, I do not want to waste my time trying to decide whether it’ll be lilies or chrysanthemums. I don’t want to be sitting in a funeral parlour filling out forms. I want to be with my friends and family. I want to be in a quiet mental place where I can reflect on my Girl’s life without the strain of dealing with “Who organizes what?”

Secondly, I want to find a celebrant that I like. I want one who can meet The Girl and find out what a special, amazing, fabulous person she is. I want that person to get a glimpse of The Girl’s sense of humour and her incredible courage. I want someone who has known her – albeit briefly – and can speak from the heart about her.

Finally, I needed to know what I’m up for financially. Believe me, when I saw the estimate, there was a point at which my family were looking down the barrel of negotiating a double deal.

I staggered out of the funeral home with my hand clutched to my heart, and immediately called Chookie Lou. She’s the sensible one. She knows how many beans make three. And besides, this is the reason I’m doing this now. Because in the cold hard light of day, I can make sensible decisions that aren’t made in the depths of guilt and grief.

The total estimate came to $10,027.00. I put the cents in there in case you thought I’d missed out the decimal point. Yes, ten grand. I sat in my car fanning my face with my hand while I ran through the expenses with Chookie. I’m going to go through them here for you. Not because I’m bitching about it. Far from it. This is the cost of death. I’ve made these decisions because I want to offer the maximum respect to my Girl, without inviting a lifetime of poverty for myself. I’m telling you so that you can plan to live longer. So here goes:

The funeral directors fees were $3700, or there abouts. Chookie Lou suggested shopping around. I said that’s pretty reasonable since they arrange everything, pick up the body, organize the cremation. They’re like wedding planners except the client in fact loses their other half…or maybe they’re like divorce lawyers, depending on your perspective.

The Casket: I chose the cheapest. There was a rental option which was marginally cheaper, but it meant that I’d have to leave my Girl in the chapel and walk out without her. She’d be taken away and removed from the casket and placed into a plain box. I don’t want that. I don’t want to abandon her. So it’s the cheapie option. But it’ll be hers.

Flowers: They were $200. Chookie Lou grappled back a minor coronary and told me to ditch them. We can pick up a lovely bouquet from a florist for a fraction of the price. We’re not our mother’s daughters for nothing.

After match function: for a scone and a cup of tea it was around $7.50 per head. I estimated we’d have around 50 – 80 mourners. Chookie Lou suggested we buy in some cakes, go back to my house, which is just down the road, and save ourselves the cost of the catering and the venue hire. Check.

Photo tribute: It was a series of photos put onto a DVD and spooled across a screen while a couple of chosen songs played. The representative asked if I’d like to sing. I told her if I sang, we wouldn’t have 50 mourners. If I broke into a stirring rendition of Into the West, we wouldn’t have 1 mourner. The chapel would clear in the time it would take me to draw a second breath. People would be stampeding the exits with their hands clapped to their ears. She asked me if anyone else in my family would like to sing. I told her I have the best voice. She pressed me no further.

The Chapel: To hire the chapel is $275.00. Chookie Lou once again got out her calculator and suggested we go to a local church. I told her I haven’t set foot in a church in I don’t know how many years. I told her that if we went to a church to save money, we’d probably have to pay the church, then pay the hearse to take The Girl there, then to pick her up. It would probably wind up being more expensive and far more inconvenient. I always knew my lack of religious inclination would come back and bite me in the ass. Who knew it would be like this?

There are other costs that can’t be avoided and I wouldn’t want to if I could. The celebrant, the death certificate, medical documentation, service sheets with a verse and The Girl’s photo, and a blown glass paper weight that’ll have a tiny amount of The Girl’s ashes swirled into it. It’s beautiful.

Now all of that is done, barring a few items I have yet to check off the list. I’ll call back with the revised schedule and we’ll knock around a grand off the total. I can do this now because I can look at the whole process with a cool clarity, and the certainty that I’ll go to The Girl’s program this afternoon and pick her up and take her home. We’re going to the beach tomorrow. We’ll have a ball. I don’t care if it rains. I don’t care if it takes all day. I don’t care if I get nothing else done.

I’ve still got my Girl and I’m loving it.

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