Tag Archives: Terminal illness

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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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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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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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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The Problem With Terminal Illness

Beach 007It seems obvious. But here’s the biggest problem with a long, slow terminal illness – it’s just that. It’s long, it’s slow, and it’s very terminal.

For me, it’s like being behind the wheel of a slow-moving car. For much of the trip, the car has been relatively comfortable. We’ve hit a few bumps along the way, but we’ve recovered, got a grip on the wheel and carried on.

Somewhere in the back of my mind, however, I’m painfully aware that this is very much a one-way trip. The car joggles along at a leisurely pace, but I’m not fooled into thinking this is some Sunday drive. I know we’re moving ever closer to a terrible collision, and there’s no way I can avoid it.

There’s no option for simply veering off this road and onto some tributary that’ll take us to a place of safety. It’s like a narrow pass etched into the side of a mountain. We’re stuck on this course and there’s nowhere else to go. Believe me, I’ve looked. I’ve searched the terrain for offshoots I can steer us up; rest stops I can pull into. And despite the fact that our journey takes place at seemingly snail-pace, I look out the side window and I’m watching the landscape of time passing us by. In January, the doctors gave the Girl six months. I have no idea if it will indeed be a six-month journey. I watched summer go by and now here it is autumn. It could be a twelve month journey. It could be longer.

And here’s one of the big problems with journeys like this – those around us, friends and family, see our days melding one into the next. They think that today is exactly like yesterday and the day before that. Believe me, I’ve fallen into that trap. I’ve woken in the night panicking because I haven’t taken enough photos of my Girl, haven’t spent enough time or sung enough songs with her. Suddenly, I find items on that Bucket and Spade list that probably won’t get ticked off, regardless of how mundane they are.

The Girl wanted to go to Valentines. I doubt we’ll get there. Even if she could sit through a couple of hours at the table, I know she wouldn’t eat because all she wants these days are the meal supplement milkshakes I make her. She wanted to go back to the beach again. I was lax. Life got busy. Then one day, summer was gone. It’s too cold to take her to the beach to play in the sand, and even if it was warmer, it’s getting too hard to take her on my own. This is time we won’t get back again. We’re in a steady descent on this journey and those opportunities are now in the rear-view mirror.

And that’s the other problem with a long, slow illness. Just like me, others forget. They know The Girl is ill. They’ve know for six months, some longer. But they have their lives to get on with. They have sick mothers to tend to, and grandchildren approaching their first birthdays. They have trips away and work commitments and all the usual stuff filling in their days. I don’t blame them. My days are full. People don’t see it. They think I sit home enjoying myself.

Believe me, nothing could be further from the truth.

Take yesterday, for example. The Girl didn’t wake early. She didn’t sleep the night before because she had ear ache. She told me she had sore feet, sore tummy, sore eyes. I got up and gave her Panadol and Codeine and went to bed. When she didn’t settle, I got up and took her to the toilet. When she began to cry that her ears were still sore, I sat up and rubbed them. Then I got a hot water bottle and put on her pillow. She finally settled at some time after one o’clock and I went back to bed.

The next morning, she slept late and I let her. Saturdays are art class. She adores her art class. So at nine, I woke her. She didn’t want breakfast, just the milkshake. I got her ready, which takes more time now because I have to assist her everywhere in case she falls. Showers take longer, dressing takes longer. I finally got her to art at close to ten thirty. She said she wanted roast chicken for dinner so I went to the supermarket and got a chicken for her. I got home at twelve, and the phone call to come and get her came at two.

Her art teacher said she’d been complaining about sore ears, so I took her to the emergency medical centre. Two-hours and $70 later, we got the same diagnosis on the ears as we did on Wednesday when I took her to the doctor – a little wax, but no infection. I took her home. She never ate lunch, didn’t want dinner. I put her to bed early and gave her a milkshake.

I have no idea where we are in this journey. I have no road map to indicate how far along we are.

All I know is that this car has no brakes so I can pull over; it has no horn so I can signal others when I’m scared. There are no lights I can flick on and off to alert people to the fact that I’m in this car alone and I need help.

Please, if you know someone in their own car. If there’s someone near you who’s caring for a loved one in the final stages of their lives, please, just pick up the phone. You don’t have to do anything. It doesn’t even take much time. Just ask them if they’re okay. Ask them how their loved one is. Let them know someone out there cares. And do it often.

You have no idea how much it will mean to them.

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