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.