Category Archives: Terminal Illness

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

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

The Learning Curve

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

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

Some do.

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

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

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

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

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

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

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

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

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

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

And I applaud you for it.

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This Is What I’ve Come To…

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

A shower in relative peace is a luxury.

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

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

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

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

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

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

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

My hobbies include housework.

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

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

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

30% of all meals are eaten standing up.

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

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

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

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

Jeans without holes are the new black.

Jeans that require heels never leave the closet.

Bedtime happens at sundown.

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

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

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

A two-hour shopping excursion results in groceries.

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

Xbox is another word for “Escape.”

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

Six hours of unbroken sleep is unheard of.

Socializing requires the phone or the computer.

“High Alert” is standard operating mode.

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

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

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

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

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

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

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