Facing The Final Curtain

It has been a year, one week and seven days since my Mum died. But, honestly, I’m not counting. Having passed the one year anniversary, the rawness of the emotion is not what it once was. Life, work, children have conspired to keep me away from this blog, yet earlier this afternoon I was reminded of Mum as I quickly threw together the ingredients for a chocolate sponge cake. Mum liked a good chocolate sponge, and I remembered her weighing the sandwich tins on the scales to ensure there was an even balance. As I did the same, I realised I was ready to write the hardest posts of all.

Final curtainTwo days after we landed in the UK, Mum was sleeping far more and interacting little. She took only a little soluble aspirin and oral morphine. She complained her pyjamas were digging in her side and kept rubbing there, but when the nurse and I checked there was nothing bunched or uncomfortable. I remember Mary, a beautiful carer who was a close friend of Mum’s, meeting my eyes across the bed and quietly shaking her head. The ‘irritation’ was internal, as Mum’s vital organs slowly gave up the fight.

I realised we had never had a proper conversation about Mum’s wishes. It was like ignoring the elephant in the room. Burial or cremation? Perhaps if we don’t talk about it,  it will all just magically fix itself? As Mum weakened on the Sunday I realised if I kept putting it off until “tomorrow” it would be too  late. So, journalist-trained, I set myself a deadline. By 11am today, I told myself, you have to have the conversation.

The minutes ticked inexorably closer. I sat down next to the bed. Looking back on that moment, I can only be grateful for the relationship we had whereby I could ask my Mum almost anything. Facts of life? She was always matter-of-fact with me. It was time for me to put all she had taught me into practise.

“Mum,” I asked, gently holding her hand. Her eyes flickered open slowly and held my gaze, still tired, still waiting. I took a deep breath. “I have to ask you. Would you like me to bury you here, or would you prefer the more portable option, so I can take you with me back to Australia?” I cry now whenever I share this story, but I recall having dry eyes at the time.

She smiled. “I think the portable option, Philly,” she whispered, her own nickname for me that no-one else used. I smiled back, holding her hand.

It was the last smile we shared before she died the following day. And I was the stronger for it.

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.

What will Grandma look like when she’s dead?

I recall little about the flight to England. I must have watched  movies, slept, eaten, drank but I have no recollection. What I do remember is watching it unfold around me,  feeling part of it yet removed. I wondered about the stories of my fellow passengers. Tears would bubble up as I remembered what we’d being doing once we disembarked in London. Part of me wanted to randomly tell people that we were here because my Mum had been given but weeks to live, as if by telling them it would somehow normalise it. That by introducing them into my shocked state would help me make sense of it.

In Worcester Cathedral, this is believed to be the tomb of Sir John Beauchamp and his wife Joan.
In Worcester Cathedral, this is believed to be the tomb of Sir John Beauchamp and his wife Joan.

Originally I’d planned to drop Tony and the kids at my Dad’s home and make the trip to see Mum alone.  I wanted to see how she was (translation: how did she look) so I could prepare the children. It was a story and SMS from my cousin, Heather, that changed my mind.

A friend of hers had made a similar trip many years before. But instead of going direct to see her Mum in hospital, she went to the family home to settle her young children and have a rest. During that time, her Mum passed away and she didn’t get to see her alive. My cousin said it took years for her friend to forgive herself. “I’d just hate for you to have to experience that, especially after all you’ve gone through to get the kids’ passports and get there quickly,” she told  me.  Her SMS to me when we landed in the UK was another, specific request to do so.

Based on when my Mum died, I could have taken the detour.  Yet I’m incredibly glad we didn’t. ‘Preparing’ the children was simply my excuse to try and delay the inevitable. I will write another post about children, funerals and death, given grandparents are typically their earliest exposure to the end of a human life.  How our two dealt with it was with a matter-of-fact calm that was inspiring – and gave me much needed lighter moments. Like the time we told Miss G (then 5) we had to go to England because Grandma was dying. “Will she look like this?” she asked, dropping her head to a left angle, rolling her eyes back, opening her mouth and letting her tongue hang-out whilst making an odd choking sound. Umm, hopefully not, darling.

Giving Someone Permission To Die

Only yesterday, I was reminded of a letter I wrote my Mum. A reader of this blog contacted me because her own mother is undergoing treatment for stage three cancer. Her fear is having to watch her Mum suffer ‘at the end’.

Mum’s dying is another post, but I do honestly believe the suffering is on the side of those being left behind. In Mum’s case, she experienced no pain and didn’t require IVs of morphine. She was not in the best of health before the cancer diagnosis. Nothing life-threatening, but a series of symptoms and illnesses that slowly, inexorably, diminished her quality of life. I worried about the impact radio and chemo treatment would have upon her already compromised immune system.

imagesSo what I did, five months before,  was write her a letter saying if, at any point, she decided it was all too tough, too hard, then it was fine with me if she chose to stop treatment. To stop exerting a will to live.

To know my Mum, the disabilities she dealt with for over twenty years, the heartbreaks of broken marriages, was to know how perfectly capable she was of ‘soldiering on’. That was her story. But in March, just in case this treatment didn’t work, I wanted to leave her the other, unspoken path. That if I could show acceptance of the possible worst, perhaps she could accept it too.

It was the hardest letter I’ve ever had to write. I told her how  proud I was of her, how amazing she had been – and would continue to be – but if it ever got too much I would understand if she wanted to stop fighting.

Whilst the treatment went well, better than anyone had hoped, when we received the news that the cancer had spread and Mum was facing palliative care rather than cure, I expected her final days to be very different. She was so stubborn, so determined, I feared her lingering for days and weeks.

I’d forgotten about the letter I had written. Today I believe it made a massive difference to how my Mum faced the end of her life. When we arrived in England, I discovered she had already begun the task of packing away precious mementoes she wanted me to have. Putting a memory box together for her grandchildren. The treatment may have gone well, but she’d obviously, quietly, decided that if the worst diagnosis came, she would be  prepared.

In the three to four weeks leading up to the anniversary of her death, I found myself asking, “Would she have known now?” Even without a diagnosis, did she feel the time was approaching? And if so, why didn’t she tell me?

And then I realise, it was both all about me and never about me. If she had an inkling, she wasn’t going to worry me until absolutely necessary. That’s what Mothers do. Protect their young. It was her death to face how she chose. I find a measure of comfort in thinking my letter may have helped her face it more easily.

A big lesson in keeping passports up-to-date

We were packed. My employer had been understanding, telling me to leave and make contact as soon as I knew anything. Tony’s employer less so, not quite making the connection why – as it was my mother, not his – he needed to leave in such a hurry. The topic of grief in the workplace is a blog for another day.

australian-passport_The evening before I went to check-in online. And experienced a soul-destroying panic when I went to put in our passport details. Both of the children’s passports had expired about four weeks before. It was close to 6pm and I literally could not think. I managed to speak to someone in immigration who would not believe I had been able to purchase flights online without entering details. I didn’t care that lastminute.com had a flawed system, I just needed two bloody passports! It got worse, unlike adult passports, the kids needed a brand new application to renew. Where would I get passport photos at 6pm?  Thank God (or whomever you ascribe random luck to) for Google, online services for printing our applications, and the wonderful pharmacist at Rockdale who stayed open late for me to skid in with the kids. When he told me that he’d only listed passport photos on a special search site only the day before, I knew, somehow, somewhere, some benevolent spirit was helping us.

It didn’t stop my sheer terror that we’d miss the flights though. Virgin Atlantic told us we had until 1310 at the absolute latest the next day to make the flight. Tony calmed me, saying I could leave the next day and he would follow with the kids, but, bizarrely, that made me even more upset. The irrationality of grief; suddenly the thought of facing a 24hr flight alone became overwhelming. Seriously – most mothers would jump at the chance to fly 24hrs without their 7 and 5 yo and enjoy movies uninterrupted. Indeed I had done so five months earlier! But this time was different. I needed my family unit around me.

The next day was organised with military precision. I left crack of dawn to be at immigration offices when they opened. Bags and kids stayed with Tony who would meet me at the airport at normal check in time. I was playing by the belief that if we just stuck to the schedule, it would all work out fine.

Bursting into hiccuping sobs in front of the immigration desk probably wasn’t my best look. They made no promises, but put the children’s passports on express — which is normally with 2-3 working days. You can rant about bureaucracy as much as you like, but I experienced nothing but support and compassion. The passports were turned around in three hours. A stressful, fingernail-biting wait, with more tears when they handed them over,  but I made the airport with time for a calming G&T before the rest of the family arrived and we embarked. Not only did the rush, the stress and the race keep me distracted, it gave me special insight into what was to become a constant theme over the coming days and weeks. The kindness of strangers.

What do you pack for a funeral?

After hanging up the phone, I remember my mind attempting to process the notion that Mum was going to die. Not as some abstract concept, that we like to explore in some philosophical way, but the stark reality that she, incredibly soon, was no longer going to someone I could call, fret about, get angry with, share news with. The whole part of my character that had been formed by this woman would no longer have a point of reference. That I somehow would be adrift.

Packing an outfit for the funeral when Mum had not yet died was impossible
Packing an outfit for the funeral when Mum had not yet died was impossible

It wasn’t a space my mind was happy playing in for long. It was like lifting the lid on a chasm of nothingness, peering into a void that – quite possibly because I had no experience by which to measure – I backed away from pretty damn smartish. Imagine preparing to abseil forwards into a dark space that has no sense of depth or width. Without a rope.

So you rationalise what you do know. Busy-ness is a wonderful tool for keeping emotions at bay. It gives you something you have control over.  And we had a lot to do. Tell our respective employers. Tell the kids. Tell the school. Book flights. Pack.

By nature, I am an activator. I like to get things done. Years of meditation and yoga have taught me to balance that but in times of stress our most base instincts kick in. Ticking items off a list gave me purpose. It was my first experience of the early stages of grief and loss that everyone goes through. Denial. A response that takes you through the first waves of pain. I rationally knew my Mum was going to die, but by making my lists and focusing on the short-term goals of simply getting on a plane, I was able to deny the emotion and delay stepping into that void.

Packing was bizarre. A normal task I had undertaken countless times before turned to wading through mud. A rogue thought would fly up from the black chasm and sideswipe me as I was folding clothes.  It bothered me that I didn’t know how many pairs of undies I should pack, because I didn’t know how long I would be away for. No matter that the UK has washing machines and M&S lingerie departments, my brain needed something concrete to fuss over.

Worse, the idea that I was going to have to pack something to wear to a funeral lodged in my brain. Whenever I thought about it too long, hideous globs of emotion would start to fight their way out.  This wasn’t like packing for the holidays we’d taken to visit Mum in the past. This was it.

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!