A Letter to Those Who Can't be Blamed

The dust has begun to settle on the small bundle of books. I had put them on the top shelf, out of her sight. I should have read them but I couldn’t. Not when the only information I could manage was what I needed to do right there and then. I was the lucky one. I knew how to be pro-active and organize the medications so I meticulously wrote down the doctors’ instructions in the planner. After a few days submerged in trying to deal with the system I pondered why the GP, district nurses, out of hours and hospital didn’t actually have any lines of communication with each other. I swirled around trying to figure it all out. After a while the pages became dog-eared from my daily changes of increases in dosage and frequency. With every suck of the syringe, I marked it off with my pink highlighter. We were naively taking further steps but somehow going into decline. Her journey pacified with pain reducers but not curers.

The phone call from the specialist came, we were fobbed off. Bite size bits of advice. All I heard was, ‘Try and keep her alive until after the holidays, we will do treatment. If not, here are a bag of "just in case" medicines.’ Just in case of what? Was it only me who could see the contradiction? I would look after her until she got better. I brushed her hair, ran the bath. I’m overcome by the memory of her rubbing the anti-aging creams into her face, now a clutter of unopened samples that lay in the cabinet. ‘My feet feel cold,’ she would say. A piece of the puzzle. The water bottle became her closest companion and the cigarettes and whisky were forgotten about. The pleasures of life unimportant compared to the pain.

The usual routine of our lives non-existent. Each day an update to family, friends and healthcare professionals. Whom am I speaking to? Which part of her story have I ran through with you? Will I even be dealing with you again or are you not back on shift until next week also? Who cares? The reply was always the same. Trial and error. It’s just trial and error. An excuse used to deflect from the real answer I couldn’t acknowledge just yet. ‘Monitor and call me so we can make changes in her medication, because it’s just trial and error.’ Did they not know how I felt? What would happen to her if I’m the one who made the error? I think they were fine passing that ball to me. Over staffed, underfunded. We paid the price.

I would shake the milkshakes and coax her to take it like a mother would do with her child. ‘Just try it, you will feel better. Hold your nose. Just take half then you can stop’. I should have forced her but I didn’t. Googling how to make death more enjoyable seemed morbid and remaining ignorant was the most I could handle then. 2ml of morphine, or was it 4ml? I checked the planner. That’s right we’re at 2.5ml and 2 long active pain pills every 4 hours so I scored it off. The anti-sickness pill counter acted the side effects of everything else. Her normal blood pressure medications the doctor said she didn’t need anymore. She didn’t need them? I asked myself as realization sunk in.

Shakes to put weight on, laxatives to move her bowels from the top, enema to move the bowels from the bottom. But to move what exactly we didn’t know because I couldn’t remember the last time she ate. Was this normal or not normal? I stood motion-less in the kitchen and looked up. The green familiar title of the books were visible and haunting. Will I open them or not? Was knowledge a blessing if in this instance it couldn’t change the inevitable that I now knew was going to happen? I rubbed the cream on her protruding bones on her back, the bedsores another ailment to see to. I should have read those damn books. I should have known to look out for this.

I phoned the helpline. ‘Hi yes, we’re here to help you but can’t really help you. Take care.’ Let’s just make her comfortable as we were still waiting for the phone call. Their lack of attention meaning that things were not that bad I thought. But the burping and passing of wind said otherwise. I didn’t need their answers I could see for myself. The machine was slowly breaking down but tolerating this gradual change. Then one day the swelling came in her foot. Then her fear for the next injection. I tried to brush her matted hair. We will get it done at the hair dressers soon I said to her as she had a break from the hallucinations. Put your thumb here I said as I changed the fingerprint passcode to numbers I would remember. Unspoken conversations between us. Cherish tonight, be in this moment, focus on the now. She was blessed with an hour that tricked us. The calm before the storm they say.

Monday came and so did the call. ‘And can you tell me, do you think she should come in for the biopsy?’ said the doctor. I don’t think a month of home care qualifies me as a doctor, but what the hell I’ll give it a bash. The answer is well isn’t that what we have been waiting on? The so called treatment? We drag her up to the hospital. Lights blinding. ‘Can you wait for everything to be put in place?’ a doctor said. ‘No, we can’t. I want to bring her home now.’ I said calmly when all I wanted to do was lose it.

The wait for answers and solutions now unimportant in this final week of hell. She was put onto the driver and my duties of care was now complete. No word of warning of what would come next. Just another day on the job for them, a lifetime of resentment for me. No chance of any sort of conversations my only job left to do was wait and hope for some sort of peace in this madness. Hurry up and go mum, just let go and you won’t feel the pain anymore. But no wait I need you to be here and stay with me. But in what form? The women in front of me was my mother, but also she wasn’t. I put her glasses and false teeth in the jewellery box. The puzzle was now complete. I had figured it all out and each piece was where it was destined to be. Three months have passed and I put the dusty books in the bin. They’re no good to me any more.

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