Thursday, 1 May 2008
I Hate May
I remember it was about 1pm. Alexander was nearly 12 weeks old, and had not long started sleeping in his cot, in his own room. I'd gotten him off to sleep, and then gotten you settled.
You had had a really bad morning. You were in tremendous pain (your 'frozen' shoulder was bothering you and your fingers were now locked in their curled position). You'd had some unexpected visitors, so didn't take your morphine. You told me that morning, when you woke up that you'd simply had enough. You were done. Ready.
I got you settled and went into my room to try to get some rest. Dad had ducked out to take Jan home, so I wasn't sleeping, just putting my feet up really. I laid back and heard a noise. I went in and checked on Alexander, but he was still asleep, though a bit restless. He was a bit of a noisy sleeper.
I heard it again. I went back in and checked on him. Nothing. I went back into my room. Again. ONce more, I slowly opened his door, and found him asleep. I turned, to go back to my room.
Then something punched me in the stomach. The wind was knocked out of me, and I felt I'd been hit. I knew. I knew, it wasn't Alexander. It was you. I lurched forward, opening your door.
The look on your face has still not left me. The terror in your eyes as you struggled, half off the bed. You couldn't press down on your alarm to alert me. You'd been trying to call out, for 10 minutes, but your CPAP machine drowned out any noises you could make.
Tears streamed down your eyes, and you were so clearly terrified. For a second, I was speechless. Then calmly, far more calm than I actually felt, I helped you up. Got you back on the bed, and sat you up. It took you a few moments to get your breath back. Your shoulders heaved and my heart pounded so loudly, I can't beleive you couldn't hear it. I tasted bitterness in my mouth, adrenaline, I guess. I shhed you, using my hand to smooth down your hair and stroke your face, until you were breathing somewhat normally again.
I apologised. I thought it was Alexander. For some reason, It hadn't occured to me that it wasn't. There was no scream, no yell. Of course, you couldn't. There was no thud. Just a muffled sound, that I thought was Alexander. You understood. You weren't angry. Just frightened.
And oh, so tired. Physically, of course. Tired of the pain. Tired of struggling to control a single muscle in your body. Tired of all of it. BUt mentally, your spirit was tired. You were tired of struggling. Tired of waiting. Tired of being afraid( you were so afraid of choking, that everpresent threat hanging over us all).
I soothed you and asked if you wanted that morphine now. You nodded. So exhausted. Ativan? No. An almost inperceptable shake of the head. You wanted the midaz. Really? You're sure? I asked. I knew you'd wanted to put off the midaz til the end.
Again, a small nod. With pleading in your eyes. I just want to sleep for a few hours. I kissed your cheek and got you your meds. I sat with you while I put them in. Your eyes were heavy, and you were ready to sleep, the midaz seemed to set in quickly.
I made to get your CPAP mask. No!
What? You know you need it to sleep.
No. Done. I don't want it.
You know what that means though, you're dependant on it now.
I'm done. I never want it again.
Ok. But I'll stay with you, if you change your mind, I'm right here.
I left you, and went out to call Dad. You should come home. There's been a thing. Can you come and be with us?
He came. She was still not quite asleep, so he went in to talk to her. I had to come in to translate. By then, I was the only person who could.
She was sure. She was done now. No more CPAP. No more drugs, other than the morphine and the midaz.
She went to sleep. We went out and went about our business. I was in the dining room, just sitting at the table staring outside. I was so overcome with guilt, my tears were hot and steady.
An hour or so later, I stood. I was hit with such a moment of clarity. I walked to the other living area. Dad walked out of the office at the exact same moment. With a look on his face that I know mirrored mine. He'd had the same epiphany.
You were done. Really done. This was it. After a year of struggling. After weeks of waiting for it to be all over for you (it was just too much, and you'd made no secret that you wanted out now) were were there. It was going to happen. I don't know why we both thought it at the same moment. But we did.
We sat on the sofa. Trying to wrap our heads around the reality. You were leaving us. Somehow you knew your body had had enough. You were leaving us.
I didn't feel sad. Not really. Not exactly. Numb. Dad retreated to his desk, to try to concentrate on some paperwork. We called the Blue Care palliative nurse to come out. She suggested trying to get Russell (your GP) to come and see you too. I called. He promised to get there sometime in the next two hours. By now, it was 3.30.
I called Joel, and he said he'd make his way home now.
The nurse came and checked you over. She said that she felt it had started. She advised us to keep up the medication. You were very sure about how you wanted to die. In your own bed. You were adamant (fortunately for us) that you did NOT want anything even resembling 'help' to die. NO euthenasia. But you did, very much, want enough pain relief and midaz to make you unaware of what was happening to you.
The nurse checked the medication logs. We'd made sure to check everything and double sign every dose of medication where possible. She agreed we'd given appropriate doses, enough to help her sleep, but not enough to have any real bearing on her consciousness, if that makes sense.
Still, you didn't wake. You were unresponsive to anything but painful stimuli. Any attempt to move you was met with the most horrible moans I have ever heard. I will never get over that sound. I still hear it sometimes and taste the bitterness yet again, as my heart begins to race.
But to all else, you made no response. No sign that you heard us. No sign that you understood us. It was as though you were just drifting away from us.
The Dr came. He agreed. It will happen tonight he said. If there are people to contact, do it now. She's got a matter of hours to go. She'll die tonight.
Of course, we had no idea that it was going to take 5 more days. And that it would be anything but peaceful.
That was 5 years ago yesterday. The 30th of April began your final days on this earth. There is more to tell. And I will. But I wish I knew the answer to the one question that has haunted me ever since.
Was this my fault? Did me not hearing you, and those horrible 10 minutes or so, the reason your body and mind simply decided it was enough. Did I kill you, Mum? Did I?
I'm so sorry. Just so you know, I'll never, ever forgive myself. I took such amazing care of you for a year. I know I did. And I screwed it up, so terribly, at the last moment. How will I ever be able to let you know how sorry I am?