Category Archives: Life

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.

 

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.

My Face has Lived and Loved

There are these times, and as we reach middle-age they probably occur more and more frequently, when we start to accept that we won’t always have those “moments of glad grace”.[1] Sometimes, a glance in the mirror tells us the awful truth, that we’d really like to ignore for at least a few more years, of lines ever-deepening; skin ever-drying; eyes less-sparkling. There it is before us – we are becoming old. We can apply all the moisturizer we like (and believe me there are times when I have furiously coaxed my face into accepting half a pot in the vain attempt to flatten a few wrinkles!) but we this is one march of progress we have no control over.

This is my face and I love it!

The funny thing is, and I do wish I could have known this years ago, there does come a point when the horror, having moved through despair into acceptance, suddenly turns into an embracing of all that is happening. This is weird – I bet anyone under 58 will refuse to believe it! – but I actually don’t mind this aging process. In fact, you know what? I’m rather getting to enjoy it!

For years, I raged against aging; fought it, tried to tame it – then it was as if I gave up on it, despaired of it, lay down and just let it roll over me. Then I woke up one day, and said, “okay, you win! Have your way.” At that moment of letting go I felt myself laugh and I held out my arms to hug my own body (including the arms with the bingo wings, the flabby thighs, the wrinkled neck and the creased up face) and I declared that this was mine! I am what I have become because I lived and loved. These lines are statements of all the times I have laughed and cried and they are reminders of all my companions on this crazy journey we call life. I’ve loved it and I still love it.

There is so much more to see and do and hear and rejoice in, but now, the pressure to be something I am not has left me. Oh, don’t get me wrong, there are times when the old insecurities creep back to niggle away and tell me ‘That doesn’t suit you’ and ask in that familiar sarcastic tone, ‘Are you really going out like that?’ What has changed is that they no longer have a grip on me; I’m not afraid to look them in the eye and assert, with a defiant tilt of my head ‘It may well not suit me, but I’m feeling good anyway, and yes, I am jolly well going out like this and you can just do one!’

I’ve been so hard on myself for so many years, it’s really a massive relief to get to this stage. Women are so very tough on themselves and on each other, aren’t they? As if we have something of a ‘duty’ to look good. And who is that determines what looking good’ actually means, anyway? Our different cultures foist these images on us, through all the different media available, and that’s reinforced in how we look at each other, speak of one another and talk about ourselves. I hear it all the time. “She’s out on a bit of weight, hasn’t she?” or even “She used to be so slim” or, my real pet hate, “She’s let herself go” How dare we let the side down by stuffing our faces with food and becoming so fat that our arms jiggle when we applaud and our thighs wobble when we run? What a terrible crime we’ve committed!

There has been many a boy who “loved [my] beauty with love false or true” and I let it matter too much. To the point where it defined who I was. There was this boy once, Michael was his name, with bright blue eyes and curly black hair and I thought he was gorgeous and my fourteen-year-old self thrilled to be chosen to be the one he snogged (sorry, very old-fashioned word!!) at a party at a friends’ house. (Do you remember those parties, where the parents, usually-unsuspecting, went and your friend invited half the year group round, we all drank something called ‘Party Seven’ and Babychams, got tiddly and some of the lucky ones paired off and the lights were turned down and we found a corner somewhere to do all that snogging and groping – never quite going ‘all-the-way-because-we’re-not easy-are-we?) So there I was, lying in his arms, feeling very chuffed when, he looked down at me and announced, “You’re really quite good-looking…(he peers at me)….from the neck down”

What?!!! You see, I should have cut and run at that point. Or possibly even smacked him. I didn’t. I swallowed the lie. I ate it and became it. I heard so many other ‘lies’ that reinforced it and my whole identity somehow became wrapped up in that “unattractive” rubbish. We have to teach our grandchildren (hopefully our children are already more resilient) to bounce away from all of that. To laugh and run and never mind.

I know someone who “loved the pilgrim Soul in [me]” – always has and always will and knows well “the sorrows of [my] changing face”. He’s the One I call Lord and he made me, in fact he “knitted me together in my mother’s womb”[2]. So many years have I fretted away though, while not fully understanding this truth. That my ‘pilgrim Soul’ is actually what really matters. I am loved because he made me; not because of what I am and what I look like. I don’t have to remain in this place, I can travel to where I’m called to be and I am held by One who also put the stars in place and made the sun to shine.

My face is changing; it shows the sorrows I’ve had, but it also declares the joys I’ve experienced and there far are more of those. It is the face of me though and I’ve lived with this changing face for a little over sixty years now, we’ve grown accustomed to each other, me and my changing face. I rejoice that, hopefully, we’ll be continuing to add lines to it in abundance for many more years to come. And if that isn’t to be, if I am called home sooner, I revel in the understanding that this face won’t be travelling with me into Eternity!

[1] “When You Are Old” W B Yeats

[2] Psalm 139:13