Starting Over

MessagesIt’s two weeks today since my beautiful Girl passed away. I wish I could say it seems longer, but it doesn’t. Time that seemed to stretch on forever is now compressed into tiny blocks barely visible in the rear-view mirror. And a strange phenomenon has occurred.

I’m living in two worlds.

I can’t say when I first noticed it. My heart broke when my Girl left me, and the pieces now seem to inhabit two entirely different realities.

The first is a world in which my Girl is still with me. I call her name, talk to her, put her music on for her. In this world, my Girl is at her program, laughing and singing and dancing with her friends. She’s in her room watching her Smurfs DVDs, sorting through her CDs, or playing her games. Alternately, I tell myself that her absence is explained by a spell of respite at the hospice. It’s an oddly comforting world that’s all inclusive, that contains all the memories, all the past, all the fun, the laughter, and the togetherness that we had. In this world, she’s still my best friend. She still holds my hand. She’s still the beautiful person I care for, look out for, fight for; the person I nurture and love. And it doesn’t matter that I can’t see her because somewhere, just around the next corner, I’ll find her waiting for me.

But living in this world has isn’t sustainable. While the music plays and I revel in the familiarity, I know the slightest ripple in the facade will break the spell. When that happens, reality kicks in.

Then I’m thrown into that other world. This one is a world of hard surfaces and sharp corners and sudden aches that fill my chest and reduce me to a howling, sobbing wreck. It’s a world where I cannot contain the pain inside. It’s the world where I said goodbye, and now there’s a space my beautiful Girl once occupied. That space is cold and empty. It has no air, creates no shadow. It’s space unfilled.

This weird double existence seems to have developed since the funeral. I went through the entire service, making arrangements, having the casket sent to her program for her friends to decorate under the guidance of her beloved art teacher. All the while I was busy organizing flowers, selecting music. I knew two of the songs that would speak volumes about the incredible person my Girl was, and the amazing relationship we had. I could not find the third. It had to be big. It had to be touching. It had to be right.

Time went, and I began to panic. My Girl had a personality ten times her physical size, so I knew it had to fill the room. I wanted something that spoke about the suffering she had left behind, about the journey she was always going to make. I spent months—eighteen months, to be exact—searching for the perfect song. The day before the service, I was at my wit’s-end. I had already decided on something only halfway good enough, when I found myself on the phone on hold, waiting to cancel my welfare payment, when the opening bars to New Zealand singer Hollie Smith’s “Bathe in the River” rang down the line. It was perfect!

It was music that would take her from us for the last time, music I would remember her by. It was music that spoke of a dignified and peaceful passing.

We gathered at my home to  drink and eat and talk about a wonderful young woman we’d been so privileged to know. I thought it gave me closure. I thought it brought me peace.

My darling friend Rachel stayed that first night. We sat up talking, laughing, and remembering.

But somewhere in the back of my mind, I was worried. Where was this great sorrow I was supposed to be experiencing? Was there something wrong with me? Had I suddenly become heartless? Or was it that I’d been grieving for so long, I was moving through the process more smoothly than I’d anticipated?

I felt robbed.

Until the next day.

That’s when World Number Two made its presence felt.

After a leisurely breakfast and a promise of many phone calls, Rachel packed up her things and deposited them at the door while we said our goodbyes. I meant to say goodbye. I really did. But the instant she lifted her bags, all the air in the house seemed to be sucked out of that open door. I couldn’t breathe. My Girl’s absence filled the house with a feeling of despair and absolute loss. An implosion in my chest folded me in two, wailing like something deeply wounded. I begged Rachel not to go.

She grabbed me, hugged me tight, then immediately unpacked. After another night of talking and remembering, we once again said our goodbyes. This time, she had to go. This time I let her.

So this is my world now. The house is quiet, my days stretch out empty in front of me. I still get up at 5 a.m. Maybe one day I’ll sleep until 6 a.m.

I have no idea what the future holds. It’s as though my purpose in life has been stolen away from me. But when I look back from this point in time, my Girl had been slipping from my grasp so slowly and for so long, I had barely noticed. What I had left was her body, racked with pain, only containing a tiny flickering light.

Gone was her amazing strength of spirit. Gone were the laughter and the twinkle in her eye. Illness had crept in while I wasn’t looking and stolen away her vitality, her essence, her radiance. Our beautiful life together was just a memory. I’d left it further back on the road without noticing. I’d been so busy keeping her alive, keeping her comfortable, I forgot to be happy. And no matter how hard I worked, how many drugs I administered, how hard I prayed, I knew she would one day leave. I never let that knowledge stand in my way.

Looking back, there were times when I prayed it would all end. There were moments when I looked to the day when we were no longer on this rollercoaster ride—not because I wanted her gone—oh, dear God, nothing could be further from the truth. I wanted to keep her with all my heart. But in reality, all I had left was a shell with that faint spark still sputtering on. It was no life for her. It was no life for me. I wanted the pain, the suffering, the hopelessness to be over. That came at a price. My Girl and her suffering went hand in hand. If I lost one, I lost the other. It was the worst no-win situation.

Perhaps one day the two halves of my world will merge. Perhaps I’ll inhabit a world where my Girl may be gone, but she’ll always be with me. It’ll be a time and place where I can see the little everyday things that were once a part of our everyday lives and I won’t fall apart. I’ll be able to hear her songs, and not feel the ache; I’ll touch her clothes and not feel that desperate yearning to roll back time and find her again.

I know the pain will be with me forever. I’ll learn to place it into a box. Every now and then, I’ll lift the lid and take out that pain. My heart will ache every bit as much as the day I lost her. But then I’ll place all that pain, all those memories back in the box, and my other world will take me onwards.

I know I’ll never be alone. I know that wherever I go, she’ll be with me, and that one day, we will meet again.

I’ve learned so much on this journey. I’ve learned to love, to laugh, to fight when I need to. I’ve learned that I can make my voice heard and that I can move mountains. I learned this when she was alive. I’ll keep it with me always.

Who could ever ask for more?

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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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One Last Breath

That's My GirlOne Last Breath is the old Creed song. It seems so appropriate right now because the inevitable has finally caught up with us. A long period of relentless monotony has given way to a new phase in my Girl’s journey. It was always coming. It was never going to be good.

Three weeks ago now, she began bloating up again. I wasn’t overly worried. It’s happened before. A little constipation here, a little gas there, lying around in bed—well, the result seems almost obvious.

As usual, I threw myself into the old routine, packing her with laxatives, giving her plenty to drink, administering all the correct medications, and carrying out all the appropriate procedures.

This time, after firing the entire arsenal at her, the situation remained unchanged.

In desperation, I searched through all my cases and boxes of medical equipment, and found a lab test form I hadn’t used. I took samples and sent them away for analysis, just in case something unexpected was brewing. The results came back a big fat zero—nothing sinister, nothing threatening.

When one of the hospice nurses paid us a visit I explained our dilemma. Her advice was to take my Girl to the hospital, let them figure out what was wrong and get it treated.

Now, let me just reiterate that long ago I came to the difficult decision not to put my Girl through a battery of unnecessary procedures and stays in hospital if it could be avoided. She hates the hospital, and only wants to be at home. She wants her music, her Smurfs and her surroundings. And yes, she wants to be with me. But her comfort has always been at the top of my list of priorities, so reluctantly, I agreed, and called an ambulance.

We arrived at Accident and Emergency with the usual fanfare—nurses recognising us, chatting about past visits and what’s brought us in today. I tell them it’s the same old story but I’m out of my depth and need the heavy firepower. They book her in and she’s immediately tended to by the doctor before being bedded down in ADU, the diagnostic unit.

Doctors come, doctors go. They make notes and tisk. I tell each of them in turn that my Girl is probably constipated, that I’d done everything I could but I suspect there could be something else going on. There are muffled consultations with specialists and registrars, murmurs of the dreaded “abdominal fluid.”

I’m desperately resisting the urge to groan aloud. I’ve been down this road so many times I own real estate in the downtown area. And so it goes:

The Emergency doctor tells me the bloating is probably fluid. It’s what happens when the liver is failing. It’s called Ascites. The cells in the liver don’t have enough protein and so they leak. The resultant fluid fills the peritoneal cavity and bloats the abdomen, causing pressure on the organs.

I suppress an audible sigh and tell him, Yes, yes, I know all about this, that this has happened more times than I can count, and that, Yes, if he wants to order a scan, he’ll find there’s a little fluid but not much, and there’s a whole wad of gas he’s ignoring but I understand he has his procedures so we may as well get on with it.

He tells me the significance of ascites. I nod and tell him it’s gas. He tells me they can drain the fluid but it comes back even more quickly. I tell him that so does the gas. He’s not listening. He tells me they need to find out how much fluid there is. I heave out a frustrated breath and tell him I’m her mother, I know what’s going on and if they’d just listen to me and address the cause of the constipation and the gas, they could get to the actual problem instead of getting sidetracked with the prospect of Ascites. Then we can address her discomfort, and get back home where we should be.

I can’t count how many times we’ve done this. It’s like we’re having two different conversations. Or maybe it’s like I’m speaking a different language, and while they’re polite and displaying an understanding of my predicament, they’re not hearing me.

But when the scan results come back, something’s changed. They show a large quantity of fluid in her abdomen.

I’m shocked.

Despite the fact that I probably already know, I ask the doctors what this means, just in case I’ve got it wrong. Just in case there’s a positive spin I hadn’t heard about. They tell me that they can drain the fluid, that it’s not uncommon, but it’s not a good sign. The fluid comes back, sometimes twice as fast. It crushes the organs, presses on the diaphragm and limits lung capacity.

What can I do? Leave it? Hardly.

I agree to have the fluid drained. But there’s no ying without yang. For every action, there’s an equal and opposite reaction. I’ve done enough physics and cared for my girl long enough to know what that means—taking that much fluid means the protein is depleted. She’ll have to have an IV line in so they can administer replacement protein.

And here we go again. We’re hurtling towards exactly the ending I’d vowed to avoid: My Girl’s life ending in a series of procedures under harsh hospital lights, with doctors and nurses and noise and discomfort.

I ask for our beloved palliative doctor. It turns out she’s moved on. Wendy, the Palliative nurse arrives. She’s Scottish and I doubt she’ll mind my mentioning her because she’s EXACTLY what I need. She’s straight-talking, honest and fabulously supportive. I ask her how long my girl has. She tells me if it was anyone else, she’d say days. But she knows what a fighter we’ve got here. We talk about options. There are two. Neither end well. She contacts the Hospice and of the twelve beds in the entire place, they’ve made one available. It’s immediately booked.

By the end of the day I’m exhausted. I’m about to go home when the young registrar appears. He tells me there’s more they can do, that he feels we’re giving up too quickly. I tell him this has been a long day after a long battle. I tell him I don’t want her put through exhaustive procedures to no avail. He says my girl has a urinary infection and a suspected lung infection. I know he means well, but the question is: What is the objective here? Keeping her alive? Or keeping her comfortable?

He tells me that the infections mean she’ll be in discomfort. If she stayed just for the weekend, they could treat her, bring her comfort. I can’t get hold of my doctor, or the hospice nurses, and Wendy’s gone home. My resistance is two feet below ground level, so I relent.

By the time I’m halfway home, I’m furious with myself. I’ve just gone against everything I promised my girl. She’s where she doesn’t want to be. She’s in pain and away from her home. The instant I get in the door, I call the hospice. The bed is still available. I tell them to keep it. Next I call the hospital, and speak to the ward nurse. I tell her I’m coming first thing in the morning and I’m taking my girl to the hospice, and that I’m not taking NO for an answer. I tell them she doesn’t want to be in a hospital, that she’ll be frightened, that she wants her mum. By the time I’m done blubbering down the phone, and begging them to take the very best care of her, the nurse has noted down my request and alerted the doctors.

Don’t worry, Baby, I’m coming to get you.

Stay tuned. There’s more to come.

 

 

 

 

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Across the Universe…

Flight Officer LeaCaptain’s Log—Stardate May 29, 2014

We have entered an unremarkable star system, on a routine mission to map new territory. After diagnosing and treating a new urinary infection in the lower decks, we have been drifting through space without further orders, and without incident for a total of nine days now.

Communications with earth are few and sporadic. I have issued orders that the telecommunications be regularly checked. I cannot allow the ship to fall into disrepair during these periods of inactivity.

Yesterday an ambassador of Starfleet’s Hospice administration made the journey out to see us. Under their advice, Hospice has provided us with an additional crew member. Flight Officer Phillips is tasked with taking the helm of the Enterprise for up to two hours per week while I carry out supplemental duties. Although my initial reaction was to refuse the offer, already I feel the benefit of the extra crew member. Yesterday I journeyed out onto the planet surface for supplies. Indeed, it is a strange world. The winter sun in this part of the galaxy is bright, the air cold. I departed in my shuttlecraft, the Honda Nostromo, at precisely 11:00 hours and under constraints of time and outside air temperatures, I completed two stops—one to collect local flora that we may replenish our food stocks , the other to collect corrective glasses for reading. Who knew there would be a SpecSavers this far out in space?

Back on board the Enterprise, however, I have grave fears for the mental wellbeing of the crew. Past experience has proven that long periods of inactivity and zero stimulation have resulted in outbreaks of insubordination among the flight officers, resulting in skirmishes among the ranks. I have therefore placed all hands on maintenance duties. Following a schedule drawn up by Scotty and myself, the ship will be systematically cleaned and overhauled during the coming weeks. Cupboards will be cleared, bathrooms scrubbed. After an initial inspection of the flight dock and cargo hold, I expect reorganization of the general stores there within to take several days to complete, if not weeks. How we have accumulated so much space junk is anyone’s guess. Reinforcements to clear the docks may be necessary. In the meantime, I have issued orders for crew quarters to undergo weekly maintenance, commencing today.

After a low level encounter with the Klingon ship, The Department of Inland Revenue, several days past, I have ordered that while the Enterprise remains in stasis, the shields are to remain up. My past experience with this species has taught me that while we must treat them with respect, they are not to be trusted. I have seen swift and bloody retribution handed out by these fiends when provoked. Since our initial encounter, we have seen no further sign of them. It has been several days, now. This gives me no peace. I know that that they will come. When they do, it will be with demands for reparation for any profiteering we may have carried out during mining activities in this sector. My instinct as a Starfleet Captain tells me to fight. For the safety and wellbeing of my crew, I have no choice but to pay their demands, and trust they leave us in peace.

Of all our challenges on this mission, however, my greatest comes from these long periods between missions. I fear they have rendered the crew open to psychological degradation. Already there are signs of delusional behaviour. Crew members are losing sight of reality—playing out the roles of their favourite television and movie characters, and falling into unusual speech patterns. Only yesterday I found my trusted ensign, The Girl, asleep at her post, a Playstation controller inert on her lap. Two nights ago, I awoke to an eerie blue light emanating from The Girl’s quarters. It transpired that during her night-time vigil, Scotty had mistaken The Girl’s request for “Smoothies” and activated the ship’s secondary television console for a night-time screening of “The Smurfs.” Are my efforts to curb mental stagnation among those in under my command too little, too late?

Only time will tell.

Signing off. Ship’s Captain—Catherine Lea.

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The Luckiest Person I Know

Just Smurfing Back Spoiler Alert!

The luckiest person I know – is me.

That’s right. When I tell people that I’m the luckiest person I know, they look at me as if I’m nuts. Maybe I am. But lately, I just keep hearing myself muttering, “Oh. My. God. I am the luckiest person I know.”

I told a someone that just yesterday. A clanging silence hung between us, then she said, “Weeeellll, yes, I suppose you could see it that way.”

Yes, I do see it that way. Let me count the ways … or at least bullet point them:

• I’m the mother of a beautiful but severely disabled girl who has taught me more lessons than you’d ever pay for. She’s funny, she’s bright, and she’s one of my best friends.

• I receive an income from the New Zealand government so I can care for my girl. Okay, so it’s not a fortune. I will not grow rich on it. But it gives me the opportunity to stay home and give my girl the quality of care she needs and deserves. It also gives me the opportunity to write while I’m doing it. I couldn’t ask for more.

• I have my own home. Yes, I worked for it. Yes, I went without to get it. Yes, there were those who thought anyone on my pathetically low income that set out to build a new home, was completely certifiable. But I did it for my girl. She’s the one that gave me the courage and the determination to keep going. If it wasn’t for her, I’d never have gotten to where I have. And there are those out there who have worked, and gone without, and still don’t have what I have.

• I have the most amazing, supportive friends. When my girl went into the Emergency this week, my fabulous friend, Marg, came to the hospital and sat for seven of the eight hours with me in the Resus Room. Then she took me home afterwards. We forwent the McDonald’s on the way because we were both too tired. That was probably also a blessing.

• I have neighbours that I can call on. My wonderful neighbour will pick up supplies for me, let the dog out when I can’t, cook a meal for me when I’m snowed, and pick up a DVD for me while they’re out. How amazing is that?

• I have in-home support. For three nights a week, I have someone come and sit over so I can sleep. It’s a service that’s supplied by the New Zealand Health Board. I’m more grateful for that than I can say.

• I’ve “met” the most supportive, sympathetic, knowledgeable, and generous group of people in BACKSPACE, an online writers’ group. I’ve made friends there, gotten advice you couldn’t find anywhere else, found help and encouragement when I needed it most.

• It was through BACKSPACE I found the amazing, wonderful, generous, Sara J. Henry. Sara is the multi-award-winning author of A COLD AND LONELY PLACE, and the stunning, LEARNING TO SWIM. It was Sara who took me under her wing, read THE CANDIDATE’S DAUGHTER over and over until her eyes bled, edited, nurtured, and cheered me on. When the book went up on Amazon, Sara was there. She threw her support behind me, opening doors, and recommending my book to her audience. You rarely find a more sincere heart. One day I will meet her. That day I will tell her how much her help meant to me. In the meantime, I shout her praises wherever I can.

• I have a fantastic group of writing buddies. One of my best friends is a terrific writer, an ER doctor, my go-to girl. It helps that she has a terrific sense of humour. She makes me laugh, she makes me work, and she manages to come up with the most fantastic ills and cures for my characters.

• My book, THE CANDIDATE’S DAUGHTER, is being read, and enjoyed, by people all around the world. It’s getting reviews that make me smile from ear to ear. I now have a second book about to go live titled, THE CONTESTANT. After that I start the sequel to THE CANDIDATE’S DAUGHTER. I get to choose what I write, and market my work on the world stage. Twelve years ago when I began writing, this would never have happened. I’m so blessed.

• I have the most incredible support from the Hospice. Only yesterday, my girl’s breathing became laboured. Her chest sounded like she was drowning. I called, the hospice nurse came. They give me support, advice, after-hours medical care, and respite. I don’t know what I’d do without them.

• My girl’s daily program, Creative Abilities, is the result of visionary Liz Soper’s desire to create a program for intellectually disabled adults, to provide a place where they find self-esteem, support, friendship, respect, and a special place in this world. Creative Abilities is staffed by the most talented, caring, and compassionate people you could meet. Every day I tell myself how lucky we were to find them.

These are only a few of the blessings I count every day.

Do I have bad days? Of course I do. There are days I really wonder how I’m going to get through.

Do I get down, angry, frustrated? If I didn’t, I really would be nuts.

But once I’ve had a grizzle and a gripe, I’ve learnt to quickly turn myself around, find the good in my day, and carry on. I’ve learnt that one bad day doesn’t make a bad life. I’ve learnt that no problem is insurmountable, that even if the outcome isn’t what I wanted, it’s what I can cope with. I’ve learnt that tomorrow, the sun will surely rise, and a new day will begin.

And that I’m the luckiest person I know.

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Gonna Be a Bright, Bright, Sunshiney Day

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

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

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

She smiles. I cannot express how wonderful that is.

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

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

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

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

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

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

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

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

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

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

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

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

Sometimes it goes badly. Like this morning.

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

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

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

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

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

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

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

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

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

I hate to think what the neighbours think.

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

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

And getting help for toileting.

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Filed under Parentlng alone, Terminal Illness

Eenie Meenie Miney Mo

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

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

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

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

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

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

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

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

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

Boy, am I ever wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You know, it was never your decision.”

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

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

Who knew? Because I certainly didn’t.

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

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

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

Slap On Your Warpaint – We Got Us a Battle

Beach 007Picked my Girl up from the hospice yesterday. Got home. Dredged out my war paint. Slapped a load on, gathered up my ammo, went on the war-path. Someone was going to pay, and they’d pay dear.

Let me back up a bit, give you the backstory.

Then let me tell you why, after all the hoopla, I did nothing.

My Girl isn’t so good. You probably know that by now. But lately she’s really been ramping down. So when I was offered a week’s respite by the hospice, even though we weren’t due, I grabbed it. I have no idea how long this will go on. Whatever date that sunset has stamped on it, I have to keep going.

At ten-thirty yesterday morning, I jump in the car, pick up a few groceries on the way, then drive straight to the hospice to fetch my Girl. She’s been there a whole week. It feels like a year. It also feels like ten minutes. This has been a long, tiring journey. For both of us. I can’t wait to see her. I’ve also been dreading it because I’m back in full-care-mode. But that’s all okay.

Until I walk into the room, that is.

She’s lying there with her hair in the pretty pink clips I got her. But she’s not my Girl. Her cheeks are hollow, her hair is sparse. It’s as though someone has sneaked in while I wasn’t there, and stolen my beautiful Girl. All I have left is a hollowed-out shell. I’m shaken.

The nurse doesn’t seem to notice the iced-over expression on my face. Instead of making a scene, I swallow back the tears, stiffen my upper lip, and say nothing.

All my Girl’s bags are packed, her meds are ready and she’s set to come home. The nurse tells me she’s been eating well, she’s been chatting, although they did notice that when they showered her first thing, clumps of her hair were falling out.

I don’t need her to tell me that clumps of hair are falling out. I can see her scalp through the strands.

When I fold back the covers, her stomach is distended again. “Yes,” the nurse tells me, “she seems to be bloating up again.”

“Maybe she’s been overeating,” I tell her pointedly. “If it’s there, she’ll just keep eating.”

The nurse doesn’t seem to have spotted the tension in my voice. She happily goes on to tell me that, no, she didn’t have big meals, but her blood sugars are soaring, and that could be due to the infection in her shoulder from the syringe pump needle.

“A shoulder infection?”

That’s right. She now has a very nasty infection from the needle site.

“Oh! Right. Of course. Why didn’t I expect that?”

The nurse doesn’t seem to notice the stinging sarcasm that’s leeched into my tone. I’m obviously too nice. (Maybe I could use anger management lessons, the ones where I manage to get angry so people know about it.)

“The shoulder looks really nasty,” the nurse tells me as she pops the meds into the bag, “but the doctors are hoping the antibiotics we’ve been treating the urinary tract infection will help clear it up.

“Oh, you’re hoping? Well, that’s good.”

Okay, so let me get this straight—I sent you my beautiful Girl who was chatty and sweet, with manageable bloods sugars, perfect skin, and a headful of silky soft hair, and after a week with you, she has a shoulder infection which, from what you’ve described, I might not want to check out while I’m sober, she has a UTI, and her bloods are screamingly high. Oh, yes, I almost forgot—and her hair’s falling out.

Yep, that’s about the size of it.

I pack her up, keep my gob shut tight. I have to go home, plan and execute the perfect response. Someone will hear about this. And they will hear in bold, anger-managed terms.

When I get her home, the wound on her shoulder is oozing. I still don’t look at it. What’s the point? I’m giving her antibiotics. I can’t do anything else. With the help of one of my *Ladies-of-the-Morning, I get my Girl into bed—ensuring there’s no pressure on the shoulder—I change her diaper, and give her a drink.
Next I call the first of my “outraged and indignant” supporters. I tell him the tale. I go into detail about the UTI, the shoulder, the hollowed-out cheeks, the blood sugars. I tell him I’m outraged. I suspect he guessed.

“Bloody hell!” he says. “What did they do to her? How could they send her home that way?”

I knew it! I knew I was right to be outraged and indignant. But I’ve still got a seed of doubt fluttering about in my brain. The remaining members of my “outraged supporters” are absent, so I call my counsellor. I tell her. I get into detail on the UTI, the shoulder, the…oh, you know, the whole lot. I elaborate on my outrage, then burst into tears. Because I can.

There’s a moment’s silence on the line. I don’t feel a bout of outraged indignation coming my way. I’m beginning to think she’s not on my side, that she’s siding with the hospice. Instead, she tells me the truth.

The Truth:

My girl is not getting better. She’s not going to get better. She will get worse.

My girl’s immune system is so weak, that anything, anything can be the difference between her life and her death. An unthinking visitor with a simple sniffle could kill her. People who are dying lose the ability to fight the slightest health issues we take for granted. For the terminally ill at end-of-life, we have to accept some facts:

There is no fix.

Bed-sores don’t heal.

Wound sites from operations get worse.

Hair falls out.

Infections happen no matter where the patient is—home, hospital, wherever.

Sometimes, not getting better is the best you get.

We live in a society where we expect medication to fix things, make illness go away. We watch movies where families sit around watching on as the loved one slips comfortably away with a simpering smile on her lips. Don’t believe me? Watch My Sister’s Keeper, then ask a hospice nurse to tell you how close to reality that is.

Reality is a loved one who dies long after everything has been stripped away. Reality is being an on-the-job-trained carer managing bowel movements, and open wounds that ooze pus and blood alternately. Reality is the loved one passing away in that very moment the loving and constantly-attendant carer nips out to the toilet, only to return to find their loved one, deceased and covered in vomit or blood or feces, and that’s the image they’re left with, along with the cleanup.

We’re not a society that learns about the reality of death. We don’t like to know. For the staff of a hospice, it’s real, and all of the above happens. They go to extreme lengths to retain a patient’s dignity, to keep them comfortable, to allow them to pass without pain. Doesn’t always happen. But hospice staff don’t sign on for the money and the perks.

Turns out that while my Girl was in the hospice, that infection was spotted the instant it arose. They checked it four-hourly, had two doctors attend to it, they changed the site of the needle, checked her blood sugars, fed her, showered her, kept her dignity.

Yes, I was right to be outraged. It’s my job.

But sometimes my job simply isn’t enough.

*Please note that while I’m privileged to have care workers who come in the mornings, they are euphemistically referred to in our house as our Ladies-of-the-Morning. Conversely, the night-watch are our Ladies-of-the-Night. Not to be confused with the “other” Ladies-of-the-Night. Just in case you…wondered.

**Also note, the headful of silky hair was probably less than a headful…Okay, was definitley way less than. Emotive language in use here.

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The Then and the Now.

Dead Cat

Dead Cat

Some years ago, I had to attend a series of chem. labs to complete the practical requirement of my extramural course: Organic Chemistry:101.

Yes, you read that correctly—Chemistry! Let me tell you, it takes a special kind of stupid to do any kind of Chemistry by correspondence. At the time I was raising two children on my own, working a part-time job, and furthering my education with extramural study in Chemistry, Biology, Maths and Physics. That’s no walk in the park. I look back now and wonder how the hell I ever did it. It just shows that with a good belt of determination, and just the right mix of insanity, you too can engineer your own near-burnout experience.

Fortunately, I still had enough youth on my side to get me through the pain. Unfortunately, that youth didn’t always serve me so well.

So there I was, on campus, living the dream of the returning student, soaking up university life and adding another string to my bow so I could leap up that corporate ladder (to mix metaphors), when one evening, after a particularly gruelling day of labs during which I found myself reaching bare-handed to catch some dripping sulphuric acid so it wouldn’t mark the bench (this was about the time I discovered chemistry wasn’t for me), I was sitting in the common room and enjoying the company of my peers. I have to admit, having left school the nanosecond I turned sixteen, I was somewhat overwhelmed, perhaps even a little intimidated, by the level of academic achievement I’d found myself in—until, that is, the moment when one of these geniuses pipes up and says, “Wanna hear a joke?”

Of course, the immediate response from the entire room is, “Yeah, go on, tell us,” and we all settle in for the impending chuckles.

So he starts, “What do you get when you throw a mental retard into—”

“—excuse me,” I interrupt, hand in the air like a kid in kindergarten, “but I think I should warn you that I have an intellectually handicapped daughter.”

A stinging silence stretches out across the room. The temperature drops a couple of degrees. The atmosphere crackles with discomfort and the almost indiscernible sounds of non-breathing. Sly glances flit around.

Otherwise, nothing—maybe crickets. Even then, I’m not sure.

And the guy continues with the joke.

As the single voice of dissension—I swallow back the lump in my throat and look around at my fellow academics for support. Heads go down. A throat is cleared. A few uncomfortable sideways glances flick my way.

I’m mortified, humiliated. My heart flips into double-time while my face blooms scarlet.

So, you know what I did?

Nothing.

That’s right. I sat there feeling a thousand tiny needles prickling my skin as the pain of fifteen years of battling crappy attitudes and off-colour jokes, and imbeciles who never think comes flooding back to haunt me. I said nothing, did nothing. There might have been a few pitying looks from those in my class. A couple of people might have been going to speak. But they didn’t.

Not one person came to my defence. Tears burned in my lower lids. I blinked them back. I had no intention of giving anyone the satisfaction of seeing me cry.

After a suitable measure of time, people relaxed, the conversation picked up as if nothing had happened, and I scuttled out of there as if I’d done something inexcusable.

I look back now and wonder what the hell was going on in my head. If this happened now, I’d throttle the guy. I’d tell him exactly what I thought of his puerile joke and his twisted sense of humour. Then at the first possible moment, I’d lay a complaint against him with the university. I’d have his sorry ass kicked so hard, he’d have graduated before he came down. He came there to learn—that’s one lesson he’d take away that he hadn’t expected.

Then I’d walk out with my head in the air.

And you know what? I am almost one zillion percent sure that every person in that common room would have told the guy what they thought, and walked with me.

So what’s the difference between between then and now? I could say that maturity has lent a hand—which is probably true.

I could say that I’m no longer intimidated by people with letters after their names and certificates on their walls—which is also true. I could say that I’m not worried what people think, that I accept that I’m weird, and that rather than bother me, I embrace it. Yeah, maybe that’s stretching it.

The truth is these days I have a swagger I didn’t used to have. I wear my role as the nurse, carer, advocate, and mother of a disabled Girl with pride. I have a level of surety about my place in the world that I didn’t have back then. It’s made me care less about what people think, and care more about what I think. But that’s only part of the picture.

It’s not just my own acceptance of what I am or who I am. It’s acceptance that’s come from my relationship with my Girl. It’s a growing acceptance of me and my Girl by our friends, by our acquaintances, by all those we come across in day-to-day life—both online and off; by the community and by society as a whole.
Once upon a time, I felt as though I was defined by my girl; that because she was “broken” that I, by association and by blood, was also looked upon as “broken.”

These days, I see myself quite differently. These days, I’m defined by my girl, but not as a victim. I’m the mother of a disabled young person. I have an enormous responsibility. I have the full responsibility for her life, for her freedom, for her dignity. She cannot control events in her life; she cannot make decisions that affect her life. That’s my job. And hell, hasn’t she got enough battles to fight?

So how did I undergo such a shift—such a mind-flip? How did I go from meek, unassuming broken Me to fist-fighting, desk-pounding, determined-to-make-my-Girl’s-life-the-best-it-can-be Me?

Lemme tell you, it’s taken some time. But I’ve been blessed.

I’ve had (and still have) friends who have trodden these very same boards, and lost their young ones way too soon. I have friends I can call on in moments of terror, or stress, or worry, or horror, or anguish. I’ve chosen my “Warrior Friends” because they’re smart and knowing and wise, but never short of a good bout of outraged indignation on my behalf at the slightest provocation.

I’ve been blessed to know the beautiful young people from my Girl’s program. These are young people society sometimes still sees as the “damaged” and the “broken.” But I’ve seen their strength. I’ve seen their courage and their love. These are young people who have friends, and loves, and lives, and sorrows and everything you and I have (or maybe don’t have). Yes, they’re different. Yes, they have challenges that you and I would crumble under—and yet, these are people who are happy and accepting of things most people wouldn’t put up with in a million years.

I’ve been privileged to know their teachers—people who show the utmost respect for those in their care. They come gladly to work with people who are physically challenged and frail and intellectually different. These teachers look upon their students as friends, as peers, as colleagues. There’s an atmosphere of mutual respect; of love, and determination to make every day count—to share in their joys and their sorrows and their everyday achievements and successes—regardless how small.

I have had the benefit of all these wonderful, fabulous, positive people in my life. I owe them more than they could ever know. And I thank them.

I look back now over my life, and realize without hesitation—that the only person within this post who was ever truly broken …

… was the guy who told that joke.

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There Is Such A Thing as Trying Too Hard

My GirlThis morning the sun came out. We’ve had a lousy summer so far—rain, wind, more rain. And the girl keeps tracking in a downward direction. Last night didn’t help. This morning I called Chookie Lou. I told her about last night; told her I’m the worst mother on the planet and that I shouldn’t be left in care of myself, let alone someone else. I told her I was going to blog about it.

“I wouldn’t,” she said.

I considered her response. “Why not?” I asked. “I want to give readers a true account of what it’s like caring for a terminally ill loved one. This is a perfect example of what can happen.”

“Blog that,” she replied, “and Social Services will be at your door before you can blink. They’ll use your blog as evidence and they’ll take her away.”

“Good,” I said. “Tell them to call first. I can have her packed in less than ten minutes.”

The previous night’s trauma began with a typically mundane day. The Girl had lain in her bed, sleeping off and on throughout the afternoon while an endless stream of Smurfs played out on her TV. Meanwhile, I caught up on my blogging, surfed the internet, made dinner, wondered what other people who aren’t me were doing.

That’s okay. That’s what I signed up for. I accept it. I even blog about it.

So why on earth, you may ask, could things go disastrously awry?

Like this:
Liver disease is a funny thing—okay, so not so much funny, as peculiar. The liver is one of the most amazing organs in the body. It removes toxins from the blood, distributes glucose, keeps everything ticking over. A little like your local water treatment plant. But I won’t bore you with an anatomy lesson. Just know that when it begins breaking down, it tends to do weird things. If pressure builds up on the portal vein, blood gets re-routed and turns up in interesting places like the oesophagus, where it bursts through into the digestive system and results in projectile vomiting in great, bright red spouts. We know all about that. It happened to the girl a couple of years ago. Color me surprised when the doctor told me what was happening.

When it’s out of whack, the liver sometimes throws hissy fits and decides to dump all the glucose it’s lovingly collected during the day. You wind up with blood sugars of a million in the middle of the night, and by morning you’re hypoglycaemic. Imagine how that affects the typical diabetic.

But that’s not all. When toxins rise in the blood, sufferers tend to feel disorientated, delirious, spaced out. Body clocks go haywire and next thing you know, you’re awake all night and asleep all day. Not good for the sole carer.

You can also imagine, therefore, how important it is to get rid of these toxins. The best way to do that, is … well, let’s just say via the digestive system. Perhaps, with my sketchy outline of resultant problems above, you can see why hydration is so important. It all goes hand in hand.

So when the Girl had slept for the previous three days, I became worried. And ignored my own better judgement.

At 5 p.m. she ate dinner. Slowly. I had made her scrambled eggs and chopped in some cherry tomatoes from the permaculture in the back yard. Unfortunately, she refused to drink. I came back several times with water, then juice, then a milk shake. Still she refused, and the above effects started looping through my brain. What if? What if?

Now, most people in this situation would simply think, “Easy. If it gets too hard I’ll call an ambulance.” But I can’t. If I send her to hospital, they’ll try to fix her. That’s their job. That’s why I busted her out the last time. If she goes anywhere from here, it’s the hospice. So it’s up to me to manage her illness. Which is what makes what I did next so dumb.

By 9 p.m. I was ready to go to bed. I had no one coming in to sit over so I could sleep—won’t have for the next four nights. So I must prepare. I can’t have the Girl singing and whooping half the night. So just before bed, I took her in a drink of juice. I sat her upright, put the straw to her lips.

She took one sip, then two …

… then choked. Yes, choked!

It’s called aspiration. It’s when fluid goes into the lungs. Most of us can cope. People with serious illnesses can’t. Fluid in the lungs causes pneumonia.

HOW COULD I BE SO STUPID?

This instant the juice hits home, it turns to foam. I can hear the wheezing and bubbling every time she coughs. Her lungs sound like a sponge with too much detergent soaked through it. I sit her up, push her forward, and slap her on the back. It doesn’t help. She’s still wheezing and coughing. Her face is scarlet and she’s wringing herself out. I incline the bed, roll her over, rub her back and call the hospice.

The night nurse tells me to give her more sedation. I tell her I need Buscopan. She tells me that doesn’t always work. Dear God, the things you learn. She tells me to administer a sub-cut—an extra dose of pain medication. I dig it out, inject it into her line, wait fifteen minutes. Finally, thankfully, the coughing slows, she settles. It’s now after ten. I’m exhausted.

Once she’s asleep, I say a little prayer of thanks, switch off all the lights, and go to bed.

This morning the Girl awakens. I can hear her chuckling. My relief is overwhelming. I cannot imagine how I’d feel if she died by my own stupidity. I know there’ll be a next time. But next time I’ll take my own advice. Next time, I’ll try to stand back, let things run their natural course. If that fails, then next time I won’t beat myself up. Next time, I’ll still blog about it, because this is what happens. And frankly, if it happens again, and Social Services call, I’ll tell them she’s packed and already to go.

They’d bring her back in two minutes flat.

I should also mention here than any references to Social Services were made in jest, and after the fact, and therefore, may not be held against us. Just in case you were wondering.

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