Companions at Journey’s End

A few weeks ago my Mum turned yellow – seriously yellow! She actually  looked as if she was auditioning for the Simpsons.

“Mum, you’re yellow,” I told her, trying hard not to sound too alarmed. “Oh I know, your sister keeps saying that. I can’t see it myself and I don’t feel ill.”

We persuaded her eventually- not easily – to go to the GP.  I dreaded what my sister would tell me when she ‘phoned me that night. I could be wrong, I thought. Surely a damaged heart valve is enough to be living with at 88? She couldn’t possibly have any liver damage, could she? It might be some kind of weird Hepatitis that they could deal with quickly.

I was kidding myself. I knew there were no other explanations. Urgent scan booked, two days later, on a Friday, she reluctantly (because she had a whole diary of commitments that day!) climbed into my sister’s car and they made the journey to Stepping Hill hospital. My sister drove home alone. Mum was too dehydrated for a scan; they admitted her and set up an IV drip to pump fluids into her.  She was irritated by the whole inconvenience. There were flowers to sort for church; linens to wash for Communion; hyacinths to be lifted out of dark places.

The CT scan was booked for the following Monday. Luckily, I could be there. I didn’t want to be there. Well, I was happy to be with her, but I knew, with a sickening ache in my stomach what it would reveal. I arrived at 11am and at midday she was wheeled down to Radiography and I walked alongside her. I’d be doing a lot of that in the coming days. Walking by my mum.

She wasn’t happy about the scan. “It’s the noise I’m worried about.”

“Good job you’re deaf then!” I joked. I expected her to be frightened as we waited; she was more bothered about wetting herself, being saturated with fluids and with bursting bladder. I watched through the open door as a Radiographer patiently explained what would happen. She had a professional, calm air about her that probably reassured Mum, but which brought home to me that I was now on ‘the other side’.

I was in the NHS for over 30 years; a nurse for most of that time, I also spent many years working with parents and families. I was the one doing the reassuring; patiently explaining; demonstrating compassion. Now I watched as Mum embraced the patient role; lay on a trolley and was fed through a ‘Polo-mint’, as they termed it for her amusement. I did not enjoy being a patient’s relative; I felt powerless and uncomfortable. I wanted to be ‘in-the-know’ and doing the reassuring.

Then began the waiting game. We would have the results by 7pm and my sister would be with me then. Our other 2 sisters and brother waiting in their homes for news. My eldest daughter and niece arrived at 6pm. Sammy, the eldest daughter, is good to have around on these occasions. She’s funny and loud; she helped us to forget that we were waiting for terrible news; news that wouldn’t be new; that would actually confirm what we actually already knew, but perhaps couldn’t accurately name.

He was a young man; no more than 30 – younger than my youngest. Dressed in green scrubs (so glad for those; they made him into someone who surely knew what he was talking about), he came and sat on her bed, next to me, opposite my sister and close to Mum, so that we would all hear him as he spoke. Ali and I held our breath. Mum looked totally relaxed and gave him a dazzling smile (she is so good at dazzling smiles!) as he began to explain what was going on inside her.

“There’s no real good news to share, I’m afraid. It seems there’s some mischief afoot in your tummy.” It was a good way to start. Mum grasped it, I could tell, but kept on smiling. “It looks to be a sizable tumour and we’re pretty sure it’s cancerous. It’s choking off your bile ducts and messing up the area round your gall bladder and pancreas.” A lot of Mischief afoot then.

He quietly answered our questions. He drew pictures to show what was going on. Worst of all, in his gentlest tone, he explained that there was nothing that could be done. The tumour was nasty, was large, would not respond to chemotherapy and could not be surgically removed. That’s when your blood runs a little bit icy cold; when you hear there’s no hope. That what lies ahead is painful and miserable. But they could make her more comfortable

“Are you saying there is only palliative care is all that can be offered?” He wanted to give us more than that. “We’re not quite there yet. We’re going to look at inserting stents into the ducts so that we can drain off the bilirubin – that’s what’s making her yellow.”

“Are you in any pain at the moment?” he asked Mum.

“Only in my legs. It’s all this fluid you’re putting in me.” Professionals want us to be grateful that they’re trying to help, but my Mum saw this intervention as nothing but a nuisance.

“I’m sorry it’s all bad news” he says. He sounds embarrassed; as though he feels he’s failed her. Ali and I are fighting back tears and Mum just says, “Well, what will be, will be.” He leaves us and we all sit there stunned for a minute. Mum is the first to spring into life. We are given a list of people who need to know – and later there’ll be a list of jobs that need to be done. She has a focus now; she knows ‘what’s what’ and somehow, despite the awfulness of the diagnosis, she is galvanized into action.  It is she who comforts us by giving us tasks to fill our time. Presents have to be bought; messages have to be conveyed.

And so we enter a period of madness; of conversations where people are shocked and saddened. Of busy-ness; where we work through the lists we have been given. Of questions and uncertainty; where  we struggle to find the right professional to give us accurate information. One day things seems clear – the next it appears no-one seems to know what’s going on. We hear nothing; there is nothing to tell us then suddenly she is whisked off to Wythenshawe at the crack of dawn for stents to be inserted. One day it is essential she has IV fluids; the next, when she tells them she won’t have her other arm made a mess of (her right one had a clot and became severely bruised and very sore) it apparently is no longer important. Then she has an infection, but it’s okay, she won’t need to be in a side-room as ‘it won’t be good for her mood’; the same evening, she goes to the loo and finds her bed and belongings moved to a side-room. We are exhausted with driving to this hospital, finding parking places, and with trying to find out facts about our own mother.

Most of the nurses are wonderful; some are not. There is the night nurse who refuses to let her get into bed at the side she finds easiest. Who tells her off (telling an 88-yr-old lady off! What?!) for needing to have her legs lifted into bed. ‘How do you manage at home? That’s not what we’re here for’. I wish I had met this nurse. I would have lifted her legs for her!

Then there is the day we can’t take any more. Mum is becoming depressed. She hates that she has to use a walking frame; that she needs a pressure cushion; that she cannot manage all her toilet needs and finds it difficult to wash. An alpha-female, used to being in control, she has been independent all her life. Now, daily, all that is being taken from her. She wants to be at home. And we’re told she perhaps as no more than a few months left with us. Her bilirubin levels are still staggeringly high. Her legs are swollen so much her joints can scarcely bend. She can’t sleep and she hates the food.

We decide to demand answers. What is the point of her being here if nothing more can be done? I ask, in my best voice, ready to stand up to professional defensiveness, if we can talk to someone about our mother’s care because we’re concerned. We are ready for battle but are instead disarmed by kindness and compassion from a Nurse Practitioner. I love this nurse. Plans are put into place with great haste and the very next day she is discharged into my sister Ali’s care (she lives with her).

What happens after discharge is another story – one I may tell another day. But a commode is installed; a special bed is delivered; carers are appointed; rotas for us are established; stair-lifts are installed; a funeral is talking of; application for lasting attorney is registered; the house and our lives are turned upside down. All this and more – as we all prepare to accompany our Mum on the last leg of her journey. As we make ourselves ready to let her go. As we watch her shrink, become frailer and wait for the inevitable pain to hit her in waves.

We have shed so many tears, but we’ve had to dry them for now as there is much to do. We have so little time with her, we can’t be wasting those precious moments sobbing. In the coming weeks, we are told, she will become less able and more bedridden as her muscles waste and the cancer invades other parts of her body (it has already found its way to some glands and into her right lung). Her heart is already compromised with Atrial Fibrillation and is working very hard to fight this invader; but it won’t win, we know that.

Mum has a deep faith.  She is not afraid of Death for she knows it was defeated on the Cross. She is, however, wary of dying. She knows it has to be done but she wishes it could be missed out and that she could just go straight to the Father.

And she does not want to leave us. We can’t bear the thought of her not being here. I think now, as I write this, that months from now, I will read this and she won’t be here. I won’t see her again in this world. I carry around the weight of the sadness of that with me always.

But tonight I have laid down the sadness for a little while. I have girded something within myself; something of her that birthed me and made me strong enough to face a tough world with a smile on my face. And I give thanks that I have the honour of being one of her companions as she makes this last stage of her journey. And I pray for strength to carry her, along with my sisters and brother, on that day when she can no longer carry herself. And for the fortitude to be able to let her go when the time comes.

2 thoughts on “Companions at Journey’s End”

  1. So sorry to hear about your mum, a lovely lady. Praying you and your sisters have time with her and then she is ready to accept the crown awaiting her in heaven 🙏

  2. This is so important, to hear the voices of those going through heart shattering experiences as they accompany someone dear through the process of dying. Through the blog the ‘real’ time experience of ‘poor’ processes, practices and lack of care are set alongside the humane, skilled and thoughtful responses of those who deliver health and social care. The strength, courage and deep love expressed by ‘informed’ family is moving. We all want to ‘make’ this difficult time ‘better’ yet feel helpless as we feel for ourselves, and those who we love. Can we talk about death, hear the voices of others, and be prepared to step forward rather than back to those around us who are dealing with this, is an important question we need to ask. I recently attended a ‘death cafe’ where all are professionally facilitated to just speak out about our own experiences of loss. It is sad, funny, scary and moving. I mostly spoke of the great support I still find from those who I have lost through my life. How I find myself in fits of laughter remembering when my mum fell face first in to the vegetable patch (she laughed too – honest)! To see someone dying in front of you is shocking and disabling at times. However I am still left with great joy and endless support from those who in fact still love me, even though they don’t happen to be around anymore. Thank you and wishing you all the strength and courage you need.

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