Week Forty-Seven

This is where she wants to be laid to rest!

I should tell Julia, Monica and Wendy that Mum is in hospital. I never thought to tell anyone apart from Debbie until now. I need to phone the hospital after the doctor has done his morning rounds too; they’ll probably move Mum to a different ward… I’m glad the shop is quiet today. It is Monday and I am waiting for the doctor to have seen Mum.

Finally the hospital phoned. It was the consultant – doing his ‘morning round’ at 3pm. He said that Mum is not responding to the antibiotics and that we need to talk. He leaves at 5pm, so I’ll close the shop now and head up there. I have just phoned Julia, who is planning to see Mum after work, so hopefully she’ll be there when I am. I feel nervous now. Please God, let me hear and speak what is true and right.

I put a 24 hour ticket on the car and headed up to where they’ve put Mum on the top floor. Julia was there waiting. I think she last saw Mum a year ago with cousin Pauline. I let the ward staff know that I wanted to see the consultant before he left. Mum had no oxygen apparatus, no saline drip and nothing going into the needle in her hand. On the white-board behind her, the scribbled message read “Nil by mouth”. She was looking fairly peaceful though. I was not looking forward to hearing what they had to say. They had certainly not kept their word and given her 48 hours on antibiotics and saline – even if they started it the moment I left on Saturday and stopped as they phoned me today, even that would be maximum of 42 hours. I suspect that in reality she hadn’t had more than 30 hours.

The consultant who had phoned came in with another consultant. When he said “hello Avril” she shot him the cheekiest smile. She never could resist a man’s voice and Julia and I laughed. The consultant knelt down on the floor between Julia and I and told us that she had not responded as they had hoped and that it was her time to go. He said that they could delay death by keeping her hooked up to tubes, but that ultimately she was not going to live without them now. He explained that the kindest course was to let her die with dignity and free of pain now that her time had come.

“But you didn’t give her time to let the antibiotics work,” I argued meekly, to which he replied that it was not going to make any difference – that her brain and body were closing down and to prolong her dying would be unkind to her.

He seemed to make sense and Julia seemed content with his prognosis and verdict. He explained that she would be put on a morphine pump which would keep her pain-free, without the need for frequent injections. He said how we needed to look after ourselves now and be assured that the ward staff would look after Mum.

Julia left and I phoned Debbie. She was due to come down in a fortnight anyway, but that was obviously going to be too late to see Mum before she dies.

I guess that without food and water you get about three days? But no guarantees. Poor Debbie could leave Orkney that evening, but still not arrive until the following night, by which time, Mammy might be gone. She has to do what she can and I have to do what I said I would do – which is to stay with Mum from now until she dies, so that she does not die alone or afraid. I phoned home to let them all know my plans. I invited the boys to consider coming to say goodbye to Nana.

I talked to Mum and began to pray for us all, settling into this new space. I spoke as much hope and encouragement as came to me, then found a Gideon Bible in the side cupboard and began reading scripture too. I am beginning to feel a strong sense of peace. I know that Mum was, and therefore is, a Christian and that her future is God’s eternal Kingdom. She is finally going home.

Simon, Josh and Conor came over on the bus and the boys looked very solemn and awkward as they said their goodbyes. Josh seemed the most upset by it all and still couldn’t bring himself to give her a kiss. They were all supportive of me staying with Nana and, as I was so upbeat about it all, they seemed reassured.

I was set for my evening vigil and I knew that Simon would look after the boys during my absence. The shop will have to wait, although I have asked Hannah to work whatever hours she can. Debbie has decided to come over on the 6am ferry and will be with us tomorrow evening, so I can now relax and enjoy my time with Mammy. The hospital staff are good about me staying.

The nurses said they haven’t been trained to use the morphine pump prescribed by the consultant, so they said they would give morphine every hour or so. It hasn’t happened like that though and I find myself calling the nurses to give her a morphine top-up every few hours. Mammy becomes very distressed and uncomfortable, writhing about the bed and moaning, until the morphine calms her again. I thought about the long list of medication that she had been taking each day in the home – Haloperidol, Levetiracetam, Lorazepam, Procyclidine, Trazodone and 2 Senna tablets every night. Three of these cause drowsiness. Mammy has had none of those drugs at least since Friday night and it is now Monday night – no wonder her body is in distress.

The chair in the room was extremely uncomfortable and there was no heating on, which wouldn’t normally bother me under a quilt, but next to the huge top-floor window, tired and half an eye on Mammy…

Mum seemed warm enough, although she didn’t have a temperature, which surprised me as the first sign of an infection is always a high temperature. Mammy’s temperature, blood pressure and everything was normal even on the day she was brought into hospital. I found myself wondering why the staff at Sunny Meadows had suspected a UTI? When had she last had anything to eat or drink? Why had they not managed to get her to drink even some water? Why did they wait so long to call the paramedics? Silly questions no doubt and academic at this point, but doubts do begin to creep in, especially in the early watch of the night, when one is tired.

I was glad to see day breaking on Tuesday – the rare event of Dawn seeing the dawn. I replenished my large mocha, guiltily ate a sandwich in front of my starving mother and looked towards the day ahead with hope and peace. I remembered the consultant’s advice to look after myself and decided that rest, exercise and food were going to have to become a part of my vigil too.

When the day-nurse came on duty, she managed to hook Mum up to the morphine pump, which was very reassuring. The nurses must have washed and changed Mum a dozen times since I have been here and I have done none of those things for myself. I went down to the hospital shop and bought myself a clean shirt and came back to wash and change. I still need a shower though.

Wendy has been to say her goodbyes and to share her memories and a few tears. Pauline came too. Mammy seems very peaceful again today. I am looking forward to Debbie arriving. Julia came again and brought a favourite Everly Brothers’ CD which she played and sang along to. Apparently she and Mum used to sing duets to The Everly Brothers when they were growing up. Julia shared many beautiful memories with Mammy and I found myself very grateful to hear of those happy times that were before my life began.

I shed some happy tears today for the life, music and dancing that Avril had once enjoyed so much. I read aloud again from the Psalms, sang, prayed and drank countless cups of mocha, but forgot to eat again.

Debbie arrived about 7pm and was with Rachel and Rachel’s new baby, Skye. This was our first meeting, but baby Skye was not allowed in the ward. Debbie and I shared a few hours together before I reluctantly left Mammy to take Rachel and Skye home to eat and sleep. I was sure that Debbie needed a good sleep as much as I did after her long trip down from Orkney, but she insisted that she hadn’t come all that way for a good night’s sleep anyhow, so I didn’t argue and gratefully crept into my own bed, after accommodating Rachel and baby, enjoying a few words with my family and making sure that my mobile phone was on charge next to my bed.

Conor greeting the new baby Skye

Debbie had promised to call me if there was any sign of Mum deteriorating.

I slept uninterrupted, but was ready to leave for the hospital as soon as the boys were off to school. I left Rachel asleep.

Debbie had found the chair so uncomfortable that she had attempted to sleep on the window-sill, but she was in good form and had enjoyed her night with Mammy. Mammy was looking peaceful and more beautiful than ever.

Debbie and I are taking it in turns; the day times we spend together at Mum’s bedside and the evenings we split – one at my house and the other at the hospital. On Wednesday I felt desperate not to endure another sleepless night, so I asked and they found me a mattress which I sank into and slept like a baby.

Mammy seems to be getting progressively better and doesn’t look like she is going anywhere. I keep playing The Everley Brothers and an early Elvis album and holding Mum’s hand.

“Don’t be afraid, Mammy!”

***

Spring seems to have arrived since I’ve been in here – I am still in boots and leather coat whilst the world and her daughter are walking down University Boulevard in summer vests and sandals.

We have been discussing the next steps, which at first felt a bit strange, with Mum still alive and possibly hearing all we are saying, but on the other hand I hope that she is approving and reassured about the arrangements that we think she would like. Debbie feels sure that Mammy wants to be cremated and we knows that she wants to be lying next to Daddy’s little plot in the kirk on Graemsay.

Later Debbie showed me a photograph of Mammy lying on the grass next to Dad’s memorial stone and we smiled. I think it will be good to have Mum’s funeral here in Nottingham, where her mum and dad’s ashes are buried and where the inscribed vase is that Mum and I had done a few years ago. Her family and friends here will be able to say their farewells and then Debbie can arrange a memorial for her Graemsay friends later in the year and Mum’s ashes can be interred next to Dad’s.

It all feels surreal, but last night I went to ask the nurse what the procedure will be when she actually dies. She seemed a bit surprised, but gave us a booklet explaining everything, saying that she had never given one out before death. We need to discuss it together though and at the rate Mum is going, Debbie will be back in Orkney before Mum finally lets go.

I also remembered suddenly that Mum and I had talked about her donating her brain to Alzheimer’s research. We never did anything more about it, so I went to ask the nurse about that too. She didn’t seem to know, but has promised to look into it. I hope it is not too late.

Week Forty-Six

My lovely Mammy and my lovely Nana

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.


Chapter 24

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.