Tag Archives: caring for the terminally ill

Goodbye, Baby.

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

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

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

And things got harder.

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

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

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

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

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

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

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

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

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

My heart is broken.

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

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

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

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

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

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

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

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

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

 

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

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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Filed under Parentlng alone