Falling Apart and Holding Together

It’s two weeks almost since Mum died, a week before Christmas Day – since the light of her dazzling smile was last seen. We have cried so many tears our jaws ache and our eyes sting  – it feels as though it helps to cry – you think you’ve finished – then off you go again, triggered at the sight of a flower or a compassionate voice. This morning it was the Magnolia that did it. She bought it for my 60th birthday, insisting we got it months before the date, as they were in season then. It was a small shrub and she helped me choose it at the Garden Centre we often visited together. As I carried food waste to the compost heap earlier, there it was, singing to me with a profusion of tight buds covering it. It will give me a riot of flowers in the Spring – and she won’t be here to see them. Will they comfort me then?

Death is horrible. It rips those who watch it apart – it drains them. Forget all that ‘wasn’t it wonderful that she was surrounded by her loved ones’ business – it’s actually bollocks (‘scuse the language). No matter who is there, it’s unpleasant, heart-breaking and downright mean. It’s an affront. An assault. Death grabbed my mother, took her away from us when we need her here. Well, that’s how I feel right now. I’m not in the mood to be pacified or calmed by the comforting words, that I’ve used with other people and no doubt will use again, despite this. Right now, at this minute, I want to howl from the rooftops that I want my mum. I want her back with us. And if she could just be back for a little longer, I promise I will never be irritated when she asks me to rub her legs for the twentieth time at 3am; I won’t grit my teeth as she turns down yet another lovingly prepared meal; or argues with me that her bible needs to go there, no not there, but just there! I won’t sigh with exasperation when she demands I phone the optician to return to check her glasses, even though I know fine well she isn’t going to pick that book up and read. I will be patient. I will be kind. I promise.

Let me tell you of her dying. We had watched her becoming frailer after her diagnosis of Cholangiocarcinoma at the end of October. I write about this in Companions at Journey’s end. I said more in Reason to be about how this has become our identity – daughters of a dying mum. And we thought we were prepared. We expected it. The only unknown was the ‘when’. And the best thing, in the middle of this horror, was that we had such good professional support. Particularly, a caring and compassionate GP. Mum would not need to suffer in pain at the end of her life. Well, once again, I have to say, that was ‘bollocks’ and I’m not asking to be excused this time.

Mum spent much of her last day in this life in terrible pain. It was horrible to watch. She died on the Monday and on the Friday before, she had become so much more unsteady and my sister and I realised we would have to make a decision very soon about insisting she was nursed in bed – it was becoming unsafe for her to try to walk to the commode any more. By Sunday afternoon, the decision was taken out of our hands as her leg gave way when my sister was helping her to bed. Thankfully our daughters live close by and were able to help lift her to bed using a blanket. She was not distressed, but obviously very weary. By now she was hardly eating at all. Sips of soup, teaspoons of custard – but little else. She’d stopped reading; she wanted to talk less and less. Our plan, made over the phone that night, was to increase the carers to four times a day; ask GP to call to review; the district nurses would come in the morning anyway. The bedroom furniture was further rearranged and the bed pulled away from the wall to make nursing easier.

Events quickly overtook us. At 5 in the morning, my sister called an ambulance as she was struggling to clear her secretions. We’d been advised that the paramedics would be able to make her more comfortable, even though she would not want to go to hospital. Wrong! They were almost insistent that she go into hospital. My sister was made to feel as though she was obstructing treatment. After an hour of wrangling with them, all the time my mum telling them she did not want to go, a call was made to the on-call GP (what a useless system that is, for someone dying!!) who did an ‘over-the-phone’ assessment and agreed that staying at home was in  her best interests. Oxygen had rallied mum and she was a little brighter. The doctor told us he would leave a message with her own GP for an  urgent visit.

After half and hour, mum was clearly in pain, had become very weak and was distressed. I set off to drive across the Pennines to be with them all. My niece, daughter and sister were all round her bed, upset and anxious when I got there. Mum was dying – it was obvious now. there would be no coming back from this. He breathing was laboured; she was wracked with pain. She was SUFFERING. Lou had phoned the GP to be told by a receptionist that the doctor would come after surgery – at lunchtime! In the meantime, we had to watch our mum crying weakly in agony. I held her hand and sang the 23rd psalm to her – the Stuart Townend version, her favourite. As I sang the words “I will trust in you alone”, it sank in that no one else can be trusted. We had been assured that this very event would not be allowed to occur and yet here she was in the most awful pain – and there we were helplessly watching and trying to comfort her.

We tried MacMillan; the district nurses – all were concerned but no one could help. We had to have a doctor to prescribe the drugs she needed. Why had they not already been prescribed? Good question! And one we are pursuing in complaint to the GP.  To cut the whole story short for now though – a GP finally arrived shortly after 2pm, prescribed the drugs, was followed back to the pharmacy by the district nurses who were back within half an hour and administered them promptly. Within minutes Mum was calm and mercifully free from pain. At peace.

My sisters, brother and I left her with the grandchildren and went with the district nurse to discuss what would happen over the next 24 hours or so. We left the nurse then, in the privacy of another bedroom to write up her notes. I’d hoped to take my youngest daughter home to feed her children – it’s 4pm now-  but was called back by my brother. He was sitting holding her hand; my sister on the other side of the bed with the youngest great-grandson in her arms, a month-old baby. With no further words, Mum let go of Paul’s hand and of life and with that she was gone from us.

Then we howled. Then we sobbed. Then we clung to each other. Horrid, horrid, horrid. Ripped apart by her exit. She brought us to this world and has left us not to cope without her. Even to the end, she did it stubbornly. That’s not the way, Mum. We were all meant to be there! You were meant to wait till after Christmas Day. It was all meant to be beautiful – not this bloody mess and wrangling with doctors and watching you suffer and feeling traumatised. You did it all wrong! Come back – can’t we try again? Do it better this time?

I ache with it all. I hate that she is not her at the end of line to speak to. That she won’t phone me and berate me about something I’d said I’d do and hadn’t got around to. That she isn’t there to make selfish demands on my time or my sisters’. That I will never see that smile again. Hear her laugh. Tell me that story – again – and again. And be there when my heart is breaking. Hold me and hug me when I need the warmth that only mums are able to give. I want her so bad and it hurts so much.

My mum and I shared a faith in God and the life to come. Of course, I know where she is and that she is free, restored and with God. Well, I think I know that. Today, my faith has been battered. I am  hoping it will hold me; my fingertips are barely holding on to it – but I am angry and in pain and it feels as if my grip could slip. What will hold me then? Where can I find peace? It evades me for now. God – we need to have words. I feel so very badly let down. She was such a good servant, Lord. Why did she suffer as she did? Take her, if you must, but not like that.

In our pain we cling to each other – my sisters, brother, daughters, nieces and nephews. We know that only we fully grasp how painful this is for each of us. Our hugs are plentiful. We talk into the early hours with each other. We text, message, share photographs. She was always at the centre of things, our mum, our grandmother – she laid a great foundation; as she has gone, so we come together and rotate around her absence, pulled closer to each other in our loss.

Reason To Be

It is six weeks almost (really? Only that long?!), since we found out that Mum’s time in this world was drawing to an end. I wrote about those very first days in Companions at Journey’s end. It helps – to write about it and to talk about it.  It’s easy to feel isolated – alone in all of this. We read on a website (I had typed “what to do when someone is dying” into a browser – because I really, really want to know what to do) that feeling as if you exist in some sort of bubble, as if life is now passing you by, as if you may not be able to concentrate on anything else, as if this, this waiting for death, is all that matters – all of that is normal. The relief we all felt was wonderful. We are so afraid of getting it wrong, Of making mistakes that will somehow ‘spoil’ what is left of our mum’s life.

Some of our questions are obvious, but seem frightening to vocalize. “Who do we ring first if she dies at night?”; “What happens to her body after she dies?”; “How do we arrange a funeral?” We hesitate about asking these questions out loud at first. And how much do we talk to mum about these things? Sometimes she seems clear and keen to discuss things life her personal effects and her funeral; her financial affairs and contacting people to say goodbye to. Other times, it is as though she is in denial about everything. She can hardly walk to the commode in the bedroom, yet demands that a stair lift be fitted so can come downstairs. She feels she is going stir-crazy in her bedroom. We doubt she will actually use it. Most of the day she is simply too exhausted to do anything. Having a drink wipes her out. Yet when someone visits, she rallies, drawing strength from some reserve deep within herself. She is delighted particularly when the little ones come – Oscar, Isabella, Jessica. She loves to watch them hunt in her drawers for the chocolate she has always hidden especially for them. She’s always loved babies and toddlers and they have always responded well to her. Last week, my sister and daughter felt the tears pressing on their eyes as they watched her press a coin into the hand of Cooper, the latest addition. A tradition she has upheld with every baby who is put in her arms.

She doesn’t rally much for us now. We have to accept that exhaustion is normal; fighting spirit is rare. She can’t sleep through the night; her legs and feet throb. She can’t lie down; he lungs feel as if they are being swamped with thick fluid. She feels totally listless and her interest in anything is diminishing daily. Sleep is her best friend, but eludes her too much to refresh her sufficiently.

Professionals are being marvellous. The community nurses bring dressings, pressure relief aids and their competency, which we grasp at. She gives them a hard time, refusing their offers of painkillers (fear of constipation!) and raised foot-stools (makes her legs hurt more). They try but they cannot please her. Carers are wonderful, giving us some respite and bringing another kind face into the mix. Allowing our inter-reactions with her to not always be about bodily functions. Allowing us to take a walk or go to the shop. They even wash pots and empty bins as they brightly chatter. We are becoming very fond of them.

The GP patiently explains what to expect; holds our hands as she tells us how to report the death when it happens; talks with us of practical things and puts her arms around us when we weep. Her compassion makes us cry more, but reassures us we are not alone and that we are cared about. All the time we know we are ‘in-waiting’, that this may last days, weeks, possibly months – the time is the one thing unknown.

As I walked to the shops a few days ago, with a list of things she wanted – prunes, jellies, tissues – and instructions to pay the papers out of  “that money, not the money you draw out” – I remember thinking that this was now my ‘reason-to-be’. Not that I was a vocational shopper, but that being ‘daughter-to-my-dying-mum’ was my reason right now. It has taken centre stage in my life, as it has in my sisters’. It is what we do right now, as I described before, we are ‘companions-at-journey’s-end’. Other things happen and life goes on; other people call on our time; jobs need to be done, but “this” is the “thing” that occupies most of our waking hours, interrupts our sleep, takes up much of thinking space and prevents us from making too many long-term plans. This is just how it is. And worse, if we feel even the slightest resentment about any of that, we hear an inner voice chastising us for being mean. Sharing with each other though, we have come to understand the normality of our thoughts and our questions.  We are not mean; just human and we’re feeling our way along a tricky path.

There is something of purpose in it; this ‘reason-to-be’. We are needed, we are treasured, we are occupied purposefully and mostly, there is nowhere else we want to be. This consuming of all of our time is what we give up willingly. It has focused us on how precious life is and how much we should revel in it. How it is only in relationships with each other that we truly come alive. We give and receive from one another and become more human in the exchange.

So, as I watch Isabella and Jessica rise up and down on the electric bed, laughing joyously and see mum smiling on at them, I remember my Gran and the huge love she had. That smile replicated on my mother’s face; that delight felt in my own heart; that beauty seen in my daughter watching them too and that laughter lighting up the room from my granddaughters. And I love that each of us pass something of ourselves, down through the generations, as we pass through this life, that will live on and light up other lives once we have passed on. More of what gives us reason to be.