Keep calm…and press the lifeline button

It has taken one year, five months and ten days for me to write this post. To write down the moment-to-moment experience of the day my Mum died. Mostly because I wasn’t proud of how it went. Somehow I wanted it to be more, show more, have more. So forgive me my delay.keep-calm-and-press-the-lifeline-button

I’ve written elsewhere on this blog that the night before she died, I spent time numbingly distracting myself with the 50 Shades Trilogy. I also cleared out lots of papers and looked through her boxes of photos. Mum drifted in and out of sleep whilst I sat on the floor next to her bed, looking at pictures of trips she’d taken on her trips to Australia.  We didn’t talk. Sometimes I look back and think, ‘Should I have sat down on the bed and awoken her to talk about the good times, get her to look at the photos, remind her of how much we’d shared and experienced?’ Upon reflection, I realised I didn’t want the confrontation. That the end was nigh. Not did I want to disturb her. If Mum was drifting in some pain-free haze, who was I to interrupt the peace?

So I softly said goodnight, gave her a last sip of water, and went to my bed in the next room. I read some more, staying awake so I could hear if she needed me, and eventually drifted off to sleep. Whilst I slept, my husband Tony came down from the guest rooms upstairs and read quietly to her – a book of Australian Poetry. It is our joke now that no-wonder she chose to die the next morning.

I awoke early to an SMS from Australia, a dear friend who I call the ‘great psychic’. Wishing my mum love and peace in her passing. I walked into the lounge room and stood next to the bed. Mum was breathing, but slowly. “Do you want a cup of tea?” I asked. No response. And in that moment I knew. She was breathing still, but it wasn’t going to be long.

I wish I could say I sat down, held her hand and with poise and grace said good-bye. Instead I took two steps back and thought, “Oh shit, do I call someone?” Luckily Tony walked in at that moment. I looked at him and burst into tears. “Should I call Mary?” he asked, referring to one of the carers, who was a short drive away.

Mum was still breathing. Her death was but moments away. Yet we were both looking externally to somehow make it better. No matter how much grace and peace I had come to believe I had around this moment, now it was here every quiet belief failed me. Tony stepped outside to make the phone call.

I stood alone next to the bed, trying to sob and hiccup as quietly as possible because I didn’t WANT her to hear me and hang on. I knew (intellectually) her death was inevitable.  And you know what she did?

She waited. Waited until I was no longer alone. She heard Tony come back in and quietly tell me that he’d spoken to Mary. Then there was one exhale. And her chest did not rise again.

‘But, but, hang on, no, wait’ my brain stuttered. It was so anti-climatic. Was this it?

Of course it was. But then we didn’t know what to do. We looked at each other. It was early, none of the carers were on shift. I’m sure we could have come to an elegant solution, should we have stopped to think, but neither of us could. The carers had said press the lifeline button should we need any help, as it would ring through for assistance. So we did.

Which meant an ambulance was sent over to take a reading of her heart and confirm death – because Lifeline had to follow its own protocol. Not exactly the quiet, peaceful ending I’d so delicately imagined, although it did give me a chance to canvas the two female medics who arrived about what had to happen next. I even asked their advice on local funeral directors – all whilst trying to ignore the piece of paper coming out the portable ECG with one long, flat line upon it.

I’ll get onto the rest of the day in other blogs. But did I learn a lesson that morning? Well, I’ll be better equipped to help anyone in future come time of death!

Mostly, I learnt that no matter what – no  matter how strong, how poised, how prepared, how stoic you think you’ll be – nothing prepares you for the moment a parent takes their last breath. And that’s OK. Because by not being prepared for that last breath, you recognise  you have been prepared all your life. To love and live. Why should we be prepared for last breaths? Last chances? Instead, prepare for first chances, first hopes, new dreams, first kisses, first love (remember that somersaulting tumble in your stomach of first love?). Because all of that, ALL of that, gets you through the last breath.

Time stand still

When someone is in palliative care, there is a lot of  ‘hurry up and wait’.  Death has its own timeline and you just have to relinquish control and  stay in the moment. Difficult in a society like ours when we’re used to filling our houses, lives and minds with stuff to distract us from the present. 5191905033_0b6d5aafb8_m

The arrival on the Friday was a flurry of handover from her carers, a visit from her Macmillan nurse, understanding the Do Not Resuscitate paperwork, plus her medications. Given I held power of attorney, as well as being the sole next of kin, made it both easier and overwhelming. Easier because I did not have to deal with any family member’s competing wishes. I could purely honour Mum’s desire to die with dignity without having to worry about anyone else. Overwhelming because, well, bloody hell, there was a little girl deep down inside who wanted to throw all the paperwork away and just have her Mum well again.

So I tried a few distraction techniques. Mum was enjoying lemonade ice blocks so I ducked to the closest supermarket. England was having an unseasonably warm summer and I decided what I’d packed was too warm. So whilst there I raced around the clothing section buying some t-shirts. Really? Instead of sitting next to her bed and sharing these last precious moments, I dived into some retail therapy, albeit a fast dose?

Grief and denial go hand-in-hand. Being able to control something (my clothes being appropriate for the weather) gave me a modicum of order over the other part of my brain that was reeling from paperwork, medication and simply seeing her lying in that hospital bed, just waiting. It gave me control during a time I felt utterly helpless and powerless to make a difference.

In retrospect, I wasn’t helpless. It was simply that the choice of how ‘to be’ was incredibly hard to face. I had to choose to be peaceful whilst my life was in turmoil. I had to pull on the big girl undies and face up to the reality of death.

It was how we presented the situation to our children that gave me the greatest strength and guidance on how to be. We told them, “just as Mummy and Daddy were privileged to be with you at the start of your lives, we are privileged to be with Grandma at the end of hers.”

I’ve no idea where that line of wisdom came from, but it was how I found my centre, my compass over the final days.  That no matter how confronting, how lonely, how intense it became, it was a privilege to be present with someone I loved at the end of her life.

And so, the end is near

There are many memories of the week leading up to Mum’s death, but none so indelibly printed on my brain as the one when I walked into her home the morning we landed. I had imagined a scenario of her sitting in her favourite chair, perhaps a little pale and tired, but nevertheless sitting in her chair, a cup of tea on a tray close to hand, with Teddy the dog curled up nearby.

It was like watching the slowest sunset, just waiting for the shadows.

This was what the oncologist’s “possibly six weeks” timeframe had given me.

My own imaginary, comforting countdown whereby in the first weeks she’d be sitting, perhaps even well enough to come out with me in her wheelchair for some retail therapy. Then, as weeks went by, slowing down before eventually taking to her bed for her final days. I’d even bought her some duty-free Clarins for a spot of in-home pampering to help pass the time.

Walking into her sitting room and seeing her lying in a hospital bed slammed my comforting countdown into a concrete wall and scattered it into millions of pieces.

Thoughts splintered through my brain in what appeared to be milliseconds.  ‘Don’t cry, keep it together, be strong’ was the first. ‘What the bloody hell were you thinking with the Clarins?’ was another. I even looked over at her favourite chair, sitting empty, because my brain couldn’t compute what my eyes were showing me in the bed.

She looked like she was asleep. An oxygen tube to her nose. On a tray, across the bed, cups with straws. Water, ice chips. Tissues. Lip balm. I crept closer and gently stroked her hair. Ever so slowly she opened her eyes and turned her head my way. It was unlike any other reunion we had had before, where Mum had always showed joy and excitement at my arrival. This time there was nothing in her eyes except a foreign weariness. A diminishing of her living will. “It’s OK Mum,” I whispered. “I’m here now.”

Honestly, it was strangely anti-climatic. No words of gladness that we’d made it. No greetings to her grandchildren or Tony. No emotional outbursts or vital words that had to be spoken before it was too late.  It was like watching the slowest sunset, a subtle dying of the light whilst waiting for the final shadows.

What do you say to someone who’s just heard they’re about to die?

The oncologist hung up, after promising me he’d go to the ward and get Mum to turn on her mobile so I could talk to her. I was battling off tears, desperate to speak to her, but dreading the phone call. My biggest fear was her stubborn streak. Would she be in denial? Would I be jumping on a plane to watch her fight to the bitter end? I had experienced so many dramas around Mum’s illnesses over the years, I was almost in giving-fatigue, as callous as that may read.

union_jack_bugger_cards-r7e4aed4c916b4e839bc86a0bfa1ccc2d_xvuak_8byvr_512She answered the phone. “Did they tell you? What did you say?” she asked. No pussy-footing around then.  I answered truthfully. “I told the oncologist, ‘bugger’,” with tears breaking into my voice.  Because it was. An absolutely sh*t, fart, poo bugger. But – and I haven’t studied yoga and meditated all these years for nothing – a small voice inside me quietly added, “it is, what it is.”

“I’ll come over straight away,” I told her. “Do you want me to bring the kids?”.

“Yes, and bring Tony,” she added.

“I love you, we’ll be there soon,” I said from the other side of the world – and ended the call. What more was there to say?

It’s only now, looking back after a year,  I realise she wasn’t asking Tony to come because she wanted to see him one last time. Not really, no matter how much she loved her Aussie son-in-law.

No, she wanted him there for me. I couldn’t see it then, because I was in my role of the strong daughter who always fixed things. A role I had been in for so long, I’d forgotten she could still be a Mom, wanting to help and look out for me.

She knew what was coming. I’d forgotten she had nursed her own mother-in-law through cancer, that her mother had been sick and died of heart disease when I was small, and that she had also nursed Rene, her Father’s second wife, when she died of cancer too. I was the one  untutored in this rite of passage. Now I understand she wanted to make sure I had someone with me.  Unconditional love – even after hearing the worst news you could ever imagine hearing.  Looking back on the phone call, she was already at peace with her lot. Now all I had to do was catch up.

Beginning of the end – the 10pm phone call

Some background: After my hectic dash to the UK earlier in the year, the good news was Mum was cancer-free. After her diagnosis in March, she’d undergone 6 weeks of radiotherapy and chemo with the usual stoicism. The tumor was gone. But there were side-effects. Due to the loss of sensation and movement in her legs from her long-term Neurosarcoid disease, Mum relied on a supra- pubic catheter.  The site of the tumor meant radiotherapy had burnt her bladder, and she had been suffering persistent UTIs . I had known she’d been admitted into hospital as any infections worsened the Neurosarcoid.

So when the phone rang at 10pm, I was expecting it to be Mum from the ward in the UK, ringing with an update. Her mobile had been turned off, much to my frustration. I’d ironically laughed at the timing of the admission, as she had been booked in four weeks before for a CT scan by her oncologist for a final cancer check. Two birds with one stone, the NHS would love that!

tumblr_lv32fwnzcn1qdom93o1_500Instead of Mum it was her oncologist. “If you’re ringing me, it can’t be good news,” I said, trying hard to hang on to a defensive sense of flippancy.  The CT scan had shown the cancer in lungs, liver, kidneys. “I can’t believe she was sitting in my office all hale and hearty four weeks ago,” he told me.  Then the dreaded question. How long had she got?

“If we hadn’t drained her lungs today, I’d be telling you to get on a plane tonight. But she’s responded well and won’t be going anywhere before the end of this week.” At this point, the shocked part of my brain wondered if ‘going anywhere’ was a euphemism for death or simply getting up out of bed. He added that timing was hard to gauge, “it could be up to six weeks” he told me. I believed him, no-one knew as well as I (and perhaps her three ex-husbands)  how stubborn my mother could be!