I have begun training in what is to be my very own business. It is called ‘PhotoPlus’. I am learning how to prepare films for processing and how to use and look after the processing and printing machines. These all need careful maintenance – they have to be fed, watered and emptied at least once a day and need to be kept clean and warm – not unlike a living being. I will also have to sort all the business side of things and paperwork, bills and legal requirements… I am glad I did some business training when helping Simon.
The business is not nearly as busy as I had hoped, but I am beginning to advertise. I am loving the work and the customers – it seems such a privilege to be a part of people’s worlds like this. Marriages, births, deaths, holidays, anniversaries – all the special moments when people take photographs – I get to see them all and hear the stories behind them. At the moment there are lots of holiday photos and I do feel like I get to travel vicariously to all parts of the world as I scrutinise each photograph to make sure it is perfectly framed and colour-balanced, before printing it. It is very exciting, but scary when the machines do not behave as they should.
I have been buzzing with things I want to talk about when I get home, but there’s often nobody available to listen. Nevertheless, I am happy and keeping on top of housework, boy time and visiting Mammy.
Mum is much the same nowadays – hardly responsive, often seemingly asleep. But she does not seem to be in pain and rarely seems disturbed by the monsters in her head. That at least is good.
End of Life Pathway
This morning I found a message from Sunny Meadows, telling me that Mum is ‘out of sorts’ with a suspected urinary infection. Poor Mammy, she has always been prone to getting them, but living in a nappy 24/7 it is hardly surprising.
I was battling away with the wet-lab printer, thinking about Mammy and looking forward to sharing some food and time together with Isabelle this evening.
I also keep thinking about Monica – I got such a shock last week to discover that Monica is very poorly now – she is filling up with tumours spreading from the cancer in her groin. She sounded fairly philosophical as she told me how she’s a good age, she has her mind and family around her and how one has to die of something. It is sad that she went through the invasive surgery to take out the cancer and through the excruciating radiotherapy on that tender flesh, only to find that it is all still growing and there is nothing more they can do. As so, as often with the benefit of hindsight, we wish we had taken a different route.
I got another call from Sunny Meadows this afternoon to tell me that Mum does have a urinary infection and that she is dehydrated, as she hasn’t been eating or drinking today. So they have called the paramedics to take her into the West Hospital and give her some IV antibiotics and re-hydrate her again.
I felt distracted trying to continue with the usual tasks and shopping. I didn’t know what to do. I wanted to go to the hospital to see her, but would need to change my plans and postpone our dinner, or maybe I could go to the hospital afterwards?
Isabelle came up with a generous solution – she would come a little earlier, drive me to the hospital and we could eat later. Fantastic! I realised then how uptight I was and was very grateful not to have to drive and do this alone.
“You will need to think about what you want to happen next!” she said cautiously, as we drove out to the hospital. “You will need to communicate it clearly to the doctors too. Have you given this much thought?”
My head started to spin. I didn’t want to think about more than the here-and-now. She was dehydrated and had an infection – the next steps were obvious to me.
“The doctors will have to make their own decisions about the best course of action, unless you tell them differently.” She ventured.
I was wondering what Mum was feeling, if she was thinking anything and what she would want. Mammy cannot communicate anything for herself.
We walked in silence through the blank corridors to her ward. I’d been here a few times before and it made me uncomfortable. Mum had not been accompanied by anyone from Sunny Meadows. She seemed so vulnerable just lying there in a booth, unknown and unknowing. Nobody to speak for her, to explain, to champion her cause. After hugging and kissing her and telling her where she was and why and what we need to do, we waited.
I spoke for Mum to a couple of nurses coming to ask questions. I explained that she was never much more responsive than now, that she cannot eat or drink independently, that she cannot stand, walk or use the toilet. She did look a sorry sight, but I was used to her like that and I know how precious she is.
As the doctor approached, I felt overcome with the sense of responsibility that I had for Mum at that moment. I explained again what Mum is like normally, what the doctor at Sunny Meadows had said – a urinary infection and possibly a chest infection – and that I would like Mum to have a chest x-ray, be re-hydrated with a drip and be put on antibiotics.
“Can I ask a blunt question?” Isabelle throws in with a direct look in her eye.
I panicked inside. This was not in the script. Was I going to be able to respond adequately?
“Do you want the hospital to resuscitate your mother or to let nature take its course?” she asked.
“I want the hospital to give her fluids, antibiotics and to take care of her as they would any patient coming in dehydrated or with a urinary tract infection.” I reiterated, relieved I thought I knew the answer to that one.
“Thank you for letting me know,” the doctor said thoughtfully, “we have to make difficult decisions at times, but we will do what you have asked and will give her 48 hours to respond before considering any other course of action.”
Our two hours car-park was nearly up and the mission accomplished, so I said my goodbyes to Mum, feeling bad as I walked away. She seemed so alone there, but I trusted she would be well cared for and would hopefully respond quickly to some fluid and antibiotics. I would come back the following day and stay as long as possible. As we walked back along the corridors, looking forward to some dinner, I reluctantly mulled over scenarios of what the doctors might have done if there was nobody there to speak for Mammy?
Both deep in thought, I broke the spell as we went outside towards the car park.
“Thank you for coming with me, Isabelle. I would have been hours waiting for the doctor if you hadn’t been there.”
“Why do you want to keep her here?” she quizzed.
“Well, because they can’t do the intravenous stuff at the home. I won’t let her stay longer than necessary. As soon as she responds and can eat and drink again, she can go back home!”
But that isn’t what she meant.
“I mean, why do you want her to stay in this life? She has no quality of life at all. Naturally she would die now if you didn’t intervene and she could go peacefully. If she recovers from this, she will go back to the home and have to come in again for the next thing. She will continue to suffer. You had the power to make that choice… We are all different!” she added, as if to excuse my poor choices.
I was shocked at Isabelle’s perspective. I thought she had been urging me to make it clear to the hospital that I did not want them to just leave her to die. How could I play God and tell them when to let her die? Don’t doctors have to do all they can to save life? Is the alternative not euthanasia?
I didn’t know how to handle these thoughts. I wanted to change the subject and make my unpleasant thoughts and confusion go away.
We ate our supper with an awkwardness. I felt accused of doing wrong to my mother, of making a bad decision, of having my head in the sand. It was true that I wanted my head buried there. I wanted reality to be different. I don’t want her to be ill and die.
Isabelle may well be right, but it felt wrong to me. I did not feel I could make such a decision on her behalf… I felt exhausted and drained with the responsibility and as I went to answer the phone to Simon, Isabelle went home.
My sleep last night was disturbed and I was glad that Sunday had come. I went to church needing to find my refuge.
I feel anxious, jittery and rather spaced out. I need to go back to the hospital. Conor and Josh both want lifts and I want to serve them. They too are precious and I need them to know that they are. I wish Simon were home to help me.
I found Mum with a needle in her arm, allowing fluids to infuse her in a slow steady drip. The oxygen tube was still at her nose, making it feel so cold to the touch as I kissed her lovely face. She looked so much better today and my anxiety and confusion were dispelled. I texted Debbie with the good news and felt positive again. Another 24 hours of this and she would be well again. I gave myself up to five hours at the car park, so I enjoyed my time with Mammy.