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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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And Just When We Were Getting Comfortable…

Remember that old song, “What a Difference a Day Makes?” That’s rapidly becoming our theme song. On Tuesday (two days ago), my girl complained of sore ears, sore tummy, sore legs, sore everything between. When your vocabulary is limited, “symptom strafing” is often the only way to get your point across. So I took her to the doctor where I counted off all the various ailments, adding that her blood sugars had been going up and down like the needle on a politician’s polygraph, and the thrush in her mouth might have returned. The gurgling sound in the back of her throat the last few nights completely slipped my mind. Until yesterday. So Wednesday morning, cue the opening bars of said theme song.

The Girl has had a restless night, so I let her sleep late. At 8:30 a.m., I waft in and raise the blind.

The girl looks decidedly pale. Her chest is rasping like a blacksmith’s bellows and her blood sugars are horribly low. When I attempt to sit her up and feed her some honey to get her blood sugars up, she groans and her eyes flicker open. Then close.

A wave of panic hits me.

I call the doctor – no instant reply. I call the hospice support nurse, then the district nurse. There’s a decision process you go through, weighing up the options and the possible outcomes. Do I? Don’t I? What if I’m just panicking? But what if I’m not?

The Girl looks terrible, so I call the ambulance. By the time the paramedics arrive, her blood sugars haven’t moved, and her temperature has plummeted along with her blood pressure. Further readings in Accident and Emergency tell us her temp is two degrees below normal, and her heart-rate is half its normal pace. In the back of my brain, I’m thinking, Thank God I did the right thing. Then the coin flips.

While the doctors take her vitals, insert a catheter, study her notes, I’m hovering and getting in everyone’s way and asking, “How is she? What’s happening? What do you think?”

I suspect they want to say, “Give us a bloody chance, will you?” but they smile and tell me they’ll let me know as soon as they know “– which, of course, is code for “Give us a bloody chance, will you?”

the stomach pain etc. He tells me that in his opinion, the Lactulose would have been better.

Typical. You ask sixty-seven doctors a question, you get sixty-seven different answers.

An x-ray show she has shadows on her lungs. Not one lung – both. That could indicate one of two different scenarios: When her blood sugars dropped, she may have aspirated. Maybe she lost consciousness and saliva ran to the back of her throat and into her lungs, and that’s caused pneumonia.

Terrific! Why didn’t I check her blood sugars? Why didn’t I sit her up when I heard the gurgling? Dammit all! Why didn’t I mention it to the GP when I was there? How could I be so stupid?

Scenario Two is that she’s her liver has deteriorated to a point where it no longer provides a thickening agent to the blood, and that now her blood has thinned to a point where it leaks across the capillary walls and is filling her lungs.

Why didn’t I do something earlier? Why didn’t I prop her up in her bed at night? How could I have let this happen?

It’s obvious this isn’t the first time the doctor has seen the expression on my face. He places his hand on my arm and says, “Stop looking for ways to blame yourself. This was going to happen. Regardless.”

Somewhere in my brain there’s a voice saying, “He’s right. There was nothing more I could have done.” But somewhere in the dark recesses of my mind, I’m still scouring my memory to find that moment, that clue that should have told me this was coming so I could have avoided it.

By 1 p.m. the catheter has emptied her bladder and a laxative has ‘unblocked’ her a little. Against all my expectations, my Girl has rallied. Her temp is back up, heart-rate increasing, blood pressure rising. I heave out a huge sigh of relief. I’m exhausted.

She’s out of the woods, but she’s not back on the road. This is only a clearing.

My wonderful neighbour arrives. She’s acting support crew and she’s brought bread rolls and smoothies. Despite my repeated thanks, she has no idea how much her help means to me. The Girl is moved to the Observation ward until a bed on an upstairs ward becomes available.

While we wait, a nurse sweeps in and asks what The Girl wants for lunch. I tell her mashed potato. She tells me she can’t do individual items. She says there’s a set menu. I’m wondering why she asked in the first place. Again she asks what The Girl would like. I tell her we don’t mind. Miraculously, she finds a menu with mashed potato and a spare meal for me. I ask the head nurse if The Girl can eat. She says yes, but only sitting in an upright position. They’re worried about the danger of her aspirating. I’m wondering if they think I’m a complete idiot; that I lie The Girl flat and pour drinks down her throat.

So I sit her bolt upright and as I’m spooning soup into The Girl’s mouth one millilitre at a time, a second nurse whisks in and tells me she shouldn’t be eating. There’s a hushed debate out in the corridor, and a chart is affixed above The Girl’s bed. Apparently, she can eat mashed potato and now she can drink in sips.

s blood pressure has dropped. I gulp down coffee and soup and return for a second bedside vigil.

For the first hour, I fully intend staying with her. There’s a comfortable chair in the room and a nurse brings me blankets, but every time I close my eyes, the squeak of shoes heralds yet another blood pressure reading…a temperature check…her pain medication – “No, not Codeine, that blocks her up”…a change of pain medication, Aarrrgghhhh! Zombiefied, I head home again.

This morning there’s a call. The Girl is asking for crayons, a colouring book and her mummy. I don’t care if she eats all the crayons. Hell, I don’t care if she eats the book. What could possibly happen? She’ll end up in the hospital?(don’t answer that).

In a couple of days, I suspect The Girl will be home. We’ll fall back into the routine and one day The Girl’s health will deteriorate and we’ll jump back on this merry-go-round. How many times, I have no idea. But here’s the thing: I’m not an overly religious person, but I’ve come to this conclusion: We have an alloted time on this earth. With all the best intentions, we can intervene, medicate, and treat for symptoms and pain. But in the end, the body decides when to call time. There is nothing we can do to change that. This is not my Girl’s time. I cannot take responsiblity when that time does come. I must remember this.

I probably won’t Until then, I’m still blessed.

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Hope and Failure

For some while now, The Girl has been in decline. She’s become more fragile. She walks with a tottering gait, she’s slow to respond, and her appetite has decreased. Thursday night, she didn’t want her dinner. She was doubled over, face practically in her plate, so I fed her. Then I put her to bed. She staggered out at nine thirty, bouncing off the walls, saying she had a sore tummy. I put her back to bed. I worried. She threw up and looked terrible, so I called an ambulance.

Going into Accident and Emergency is a last resort. It’s the decision I take when I’ve exhausted all the other options, when I think there’s nothing else I can do. We arrived at ten thirty. We waited. We saw nurses, waited; saw doctors, waited some more. Finally,  at four thirty the following morning they took her to the assessment ward, and I went home.

Friday morning the specialists arrived. Doctors, nurses, consultants. They questioned, examined her, studied her notes. Just after lunch, they gathered and quietly drew me aside. I stood surrounded by a semi-circle of doctors, junior doctors, diabetes specialists, and they told me The Girl was in the final stages of liver failure. The hospital social worker would be called; the palliative team would be called. I’d have support, I’d have help – whatever I needed.

I burst into tears.

I called my sister, Chookie-Lou. She burst into tears. I called the Chukker-boy. I told him The Girl was in “the final stages of liver failure….” which was then followed by a series of muffled squeaks because I dissolved into a flood of tears. He said he was leaving right now. I hit redial and called him back and told him we weren’t talking last rites here, that she wasn’t passing over right this minute. He said he’d come anyway.

We sat by her bed. We met with the social worker. I told her I wanted The Girl to come home. The Girl would not want to spend her last days in a hospital. The Chukker-boy told us The Girl would probably bounce back. We gave him grim smiles and nodded like we understood he was trying to see the bright side. Like he was deluded but we’d humor him. The social worker told me I’d have support, I’d have equipment; everything I needed was at my disposal. So I went home.

I called The Girl’s art teacher/respite carer, told her the news. She burst into tears. I called her program manager, told her. A succession of calls went out causing a wave of people all over the North Shore to burst into tears.

I returned Saturday morning. The Girl was sitting up in bed. I helped shower and dress her. She wished the nurse Merry Christmas. I told her Christmas was over. She remained hopeful.

She requested her Playstation. She requested a movie and a haircut, then polished off an enormous meal. She watched The Smurfs and nodded off for twenty minutes. Frankly, she was looking pretty chirpy for someone at Death’s door.

She ate her afternoon tea, colored in three coloring books, and demanded Pokemon. At four o’clock, I kissed her goodbye, told her I missed her. She gave me a cursory wave and carried on coloring.

By the time I got there on Sunday morning, she’d eaten breakfast and had morning tea, gulped back a cup of tea and wished the entire ward staff Merry Christmas. I told her it still wasn’t Christmas. She still remained hopeful and ate lasagne for lunch. I asked her what she wanted – what she needed. She said, “More lasagne.” I told her there wasn’t any more. A nurse came and took blood. The Girl wished her Merry Christmas. I reiterated to her that Christmas was done and over, that her birthday was next in line. I told her visitors would come today. She queried the present situation. I told her not to get her hopes up.

When I left tonight, she was sitting up coloring her Dora the Explorer book and looking slightly miffed because the expected presents never materialized and I had confiscated the computer which, by rights, should be hers to watch a Smurf DVD on. Boredom is threatening. Hospital life is suddenly not looking quite so terrific. She wants her Playstation. She wants that haircut and to go to the video store.

Tomorrow will be interesting. The palliative team, the diabetes team, the ward staff and doctors will converge to plan the way forward. The Girl will probably wish them Merry Christmas and shock the hell out of them. She looks better than I do. I’ll tell them not to be too surprised, that The Girl has had more lives than a bagful of bloody cats. Then I’ll take her home.

I know this won’t last forever. I know that one day, probably in the not-too-distant future, we will need the palliative team and the social worker and all that support so I can keep her at home. We’ll be calling people in succession and causing them to burst into tears. I’ll be preparing myself for the worst, for when The Girl is slipping away from us. I don’t think today is that day. I think this has been a dry run. But it’s made me realize some things:

  • It’s made me realize just how much I’ll miss her
  • It’s made me see how much my life will change
  • It’s given me a glimpse of how much she brings to my life and those around her
  • It’s brought me to appreciate the time I have left with her
  • It’s reinforced for me what a wonderful, special and amazing little person she is
  • It’s made me realize that the time I’ve spent with her has been worth every minute; that my life has been enriched by her; that, given the choice, I wouldn’t have done things differently
  • It’s made me see once again just how much I love her

And who could want more?

 

 

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Holy Mother of God, Is There No End To This?

Yeah, I know. I started out titling all my blogs after songs, but I couldn’t find one called, “Holy Mother of God, Is There No End To This?” There may be one – I didn’t look.

The girl got sick. She came home from her art class on Saturday and went straight to her room. I came in a half hour later to find her inexplicably lying on the floor. So I said,

“What are you doing down there, you silly old sausage?”

She didn’t reply but that was okay because she rarely does. Halfway back down the hallway the notion hit me that she never, and I mean never, lies on the floor. She stands, she sits, she bends, she even snuggles in bed – all positions controlled and easily reversible. NEVER does she lie on the floor.

Sure enough, a blood sugar test showed she had a reading of 1.8 mmol/L. To get this into perspective, the normal blood sugar range is between 3.5 and 8.0, or if you’re using the American standard, it converts to 32.4mg/dl, which in anybody’s standard is pretty damned low.

First in went the honey, then another blood test. Cycle repeated until The Girl’s fingers were speckled red with pin-pricks and the honey pot was half full. Finally her sugars rose to 19.7 – which is way over the top. But slightly more managable.

By now she was disoriented and wobbly on her feet so I manoeuvred her into bed, spoon-fed her some dinner and told her to rest. Best thing, right?

Apparently not if you’ve contracted norovirus! I’m not going into details. They’re all way to ugly to mention.  Let’s just say it was a long and messy process that involved a seemingly endless cycle of, “changing jammies, changing bedding, washing everything, then repeating”.  All Saturday night, every hour, on the hour.

The next morning I looked like something out of that Michael Jackson Thriller video. My sister, Chookie Lou (not her real name), called and asked if she should drive the three and a half hours from her place up north to come and help me. I stoically told her the girl was sick but fortunately, I never get sick so I was okay.

I spoke too soon.

That bullet I thought I’d dodged ricocheted off the bathroom wall, resounded off the porcelain and hit me at 5:30pm. So there we both were, stuck in the “change jammies” cycle, except now the recurrence had sped up to every half hour.

Finally, at 1:30am I forced myself up out of bed feeling like one of the not-quite-fast-enough at the Running of the Bulls and took her blood sugars again. A whooping 3.2!

Bugger it!

I staggered into the kitchen and squeezed half a dozen oranges and grabbed a bottle of lemonade from the fridge. I believe that saved our lives. Or at least, it saved a tiny percentage of what passes for my sanity along with several changes of bedding.

It’s taken us a few days to recuperate. I’ve lost 2kg in weight and learned the difference between the American and the New Zealand standards of blood sugar measurements. Every cloud, so they say.

And hey! I’m still here. And you know what?

I feel good. I love that I feel well again. I love that the girl is getting well again. (Even though she’s now howling because Crash Bandicoot isn’t going the way she planned).

I know it’s tough when you’re the first one up, last one down. I know it sucks when you’re the one those around you lean on, and you only have yourself for support. I know it’s lousy when you get so low you seriously wonder if you’re doing it right.

But when you get to the other side and the sun comes out; when the washing’s done, the bed’s are clean and all The Girl wants is her music on, that’s when you can look back, know you’re stronger than you thought, that you have the resilience to keep going, and the strength to survive.

And that’s when you know you’re truly blessed.

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