Kindness to a stranger

Kindness to a stranger

This week – 24-30 May – is Palliative Care Week. As a family member of someone who received palliative care, I have written this blog in tribute to palliative care professionals.

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They put her in her prettiest nightie, the palliative care nurses, even though I had told them that the body would not be viewed. They took off the nightie she had died in, washed her, and re-dressed her in the one with the little flowers around the neck, and brushed her grey wavy hair into neatness.

“We couldn’t do anything about the mouth,” they said, and we all fell silent for a moment while regarding it gaping open, displaying old teeth and gums for all the world to see. “That’s OK, “I said, because all the world wasn’t going to see it, just me and those two nurses, and a few other people. According to her wishes, Mum’s corpse was to be afforded privacy – no viewings at the funeral – only to be briefly touched by the unavoidable utility of being examined by her GP in order to pronounce death, and readying for cremation by the funeral directors. The fact that the nurses had washed her, dressed her in her best nightie, and brushed her hair would’ve meant a lot to a woman who had always been insecure about her looks and who, correspondingly, took refuge in little harmless physical vanities. Not that the nurses knew that; they never really got a chance to talk to her.

Mum died sometime in the evening of Friday 19th May 2019, having spent 3 days in the palliative care ward at Mercy Health in Albury. I had chosen to camp out by her bedside, for my own sake as much as hers, while other close family members visited or rang. We had briefly tried nursing her at home, but the awful symptoms of a person dying simultaneously of kidney failure and Leukaemia – both physically and psychologically distressing – had defeated us. We could not make her comfortable. Palliative care had always been Plan B, and Mum was able to confirm, in one of her last few episodes of lucidity during that final dreadful week, that she was ready to go into the ward.

I was fully confident of Mum receiving efficient and appropriate medical care, and further impressed by the combination of kindness and expertise shown by the visiting nurse from the community palliative care program, who coached us in nursing her at home. So I was reassured by our joint decision to move her into palliative care, expecting that she would be more comfortable there.

And she was. The drugs they gave her took the pain, nausea, restlessness, and hallucinations right away. Too weak to even talk on her last Friday morning ever, she soon slipped into a sleep that was complete in its stillness. She died, peacefully – and I was there to see her last quiet breath – on Sunday evening.

So, medical efficiency I expected. But what struck me, and what I am profoundly grateful for, was the gentleness and dignity with which the nurses treated her poor dying body and, therefore and by extension, our poor frazzled minds. Such was the insensibility of Mum in her last prolonged sleep, such was her utter inability to be roused, that anyone could’ve played noughts and crosses on her bare naked flesh and she would never have known or stirred. But the nurses explained gently to her unresponsive form what they were doing as they cleaned and medicated her, and touched her tenderly in their ministrations.

In her article The inconvenient truth about dying, Sarah Malik explains that not everyone gets to die peacefully; some poor people’s symptoms are such that a complete absence of suffering is just not achievable. We were very lucky that Mum’s symptoms were able to be mitigated by the massive cocktail of drugs administered in palliative care. We knew that she was not suffering in any way. But we were also able to witness a level of care that not only tackled physical anguish, but also manifested a compassionate regard of the person Mum had been while alive. The nurses didn’t know this person at all, but they accorded this rapidly dying piece of flesh the dignity and consideration that every human being wants while they are alive.

In the absence of having to nurse Mum ourselves, we were free to adjust to the idea that she was soon to be gone, to start to grieve, to talk to her silent form one last time, to just be there.

After Mum exhaled her last ever breath, I sat there in disbelief, waiting for the next one. I waited for minutes. Finally, I rang for the nurses. They explained what was going to happen next, then the three of us stood looking at the poor body. One of the nurses reached out and squeezed Mum’s dead knee underneath its white hospital blanket. “Aw, Jenny,” she murmured. We a conferred about practicalities a little more. And then she did it again. “Aw. Jenny.”

We left Mum’s remaining clean nighties at the palliative care ward, and dropped off a few more: the nurses had mentioned that some patients did not have families to launder and bring in fresh sleepwear for them. I don’t know if this was a helpful thing for us to do or not. I felt like making a gesture, but I knew not what. Not that any was ever expected.

Grieving, remembering, and forgetting

Grieving, remembering, and forgetting

“The idea of being forgotten is terrifying.” So writes Susan Orlean in ‘The Library Book.’ And I think this is probably true for most people.

But, as a bereaved person, the idea of forgetting is, for me, equally confronting. During the stress of experiencing my mother’s active dying and then death, my memory started playing tricks on me. I was uncharacteristically good at remembering dates during this ‘adventure’: diagnosis 1 April 2019 but she told me on the 12 April 2019, death occurred 19 May 2019, funeral 23 May 2019… but I am less successful at remembering times. I know she died in the evening of 19 May 2019 while I sat beside her watching a superhero movie, but I forget at what time exactly.

The experience of camping out in her palliative care ward felt so vivid, and my senses so heightened, that there are certain things about that place that I thought, when I experienced them, that I would never forget, but which faded from sharply defined episodes to faded jumbles with surprising rapidity after I had left there.

Years ago, we saw Sleepless in Seattle – a film she loved – for the first time in each other’s company. I am absolutely clear about that. But I forget whether or not we saw it in the cinema or on telly, and whether or not any other friend or family member was there with us. In that film there is a scene where a small boy tells his father that he is starting to forget what his dead mother looked like. I have read that this is the case for other bereaved people too.

I don’t want to forget her. I don’t want to forget the things I loved about her: her mad violent laughter, her childlike and often comical expressions, her power with words, her urgency of emotion. She wasn’t an easy woman, with difficult qualities rubbing up against the joyous. So it feels important to hold onto a memory of that beguiling side of her now that I do know that there were things I genuinely loved about her, now that the relief of the absence of her unjust demands and sometimes cruel game-playing has cleared space for me to figure out what I actually feel about her.

It’s equally important, too, not to forget the bad stuff: the tantrums, the whiplash volatility that was so disorientating to experience, the constant grabbing for attention and endorsement that was so exhausting. Now that my family and I have time to draw breath and actually reflect, we need to gauge exactly what that woman took from us and what she gave, and what the imbalance between those things was, and how it has shaped us. To do this – to reclaim our sense of self – takes accuracy of perception so that we can carefully weigh all this up. To find this accuracy, while being hit by waves of grief-elicited emotion like sadness, relief, anger, requires a good memory.

Then there’s an accepting of the things about my mother that live outside the realm of memory because they were the things I never knew about her. What did the core of her look like, I often wondered, for her to behave in the way she did? Was it a heaving broiling mess of emotional lava? Or was the frantic psychological shape-shifting and spell-casting a front, protecting a core that was empty? I always knew she could never tell us because she didn’t allow herself to know. Whatever she sensed was in there was something she was too terrified to look at.

For the last three days of her life, lying deadly still (there’s no other way of putting it) in the palliative care ward, Mum didn’t wake up. We called it sleeping, but, such was the level of unresponsiveness, I suppose it was a coma. During that time I kept vigil, over my own reactions as much as her unmoving form, and offered a few last pathetic tendernesses: I spoke to her uncomprehending head, told her she could go, that we would be alright, blah blah blah, all the stuff you’re supposed to say. I recited a favourite poem, and described a beautiful late-autumn dawn, the cockatoos and trees outside her window. She loved words, plants and birds. I shoved little chips of ice into her slack mouth until it gaped and then stayed open and couldn’t retain them anymore.

And I touched her hair, like a parent brushing the hair of a child. Mum had often had a tendency of behaving like a toddler, forcing myself and my sister, often and reluctantly, into quelling her fears and nudging her out of her outbursts like older siblings or parents. My earliest memories are of doing this.

Because this responsible behaviour was compelled, and not reciprocated, it made me reluctant to freely offer as much tenderness when I might have, as much as I tried to remain good friends with her. I was loyal, said the right things, and hid the right secrets. But there was no room for voluntary gentleness in the middle of Mum’s psychically violent world; the best I could manage was determined good will.

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‘Grieving Mother’ (1903) by Kathe Kollwitz

But in her last sleep, when she no longer had the power to try and control the doing of it, I touched her hair. I don’t know why. It was out of instinct. Her hair was naturally wavy, and a lovely grey. Given the buoyancy and naturalness of that wave, and the thickness of each individual strand, I expected her hair to be stiff and harsh in texture. But it felt gloriously soft, silky, almost baby-like. If I had not given into that instinct, I would never have known.

Will I forget that?

Impostor Syndrome and Grief

Impostor Syndrome and Grief

“That night, that year of now done darkness…”

I’ve spent most of the last 12 months feeling like a moron: struggling to concentrate, to learn or take in new information, to make good judgement calls, to trust my memory.

My “year of now done darkness” contained the suicide attempt of a family member, which was shortly followed by the news of my mother’s diagnosis with cancer, and that was followed – with shocking quickness – by my mother’s actual death.

The rest of the year was bullshit: the worst kind of workplace politics lead to me being the target of bullying, which kicked in not three weeks after poor Mum’s funeral. Various other snafus and stoushes bookended all of the above. None of these smaller dramas were as hard hitting as the bullying, or the near or actual death of people I cared about, but all served as a further drain on my resilience.

In amongst all of this I started a new contract. News of the suicide attempt came just two days before my induction. I went in pretending I was in Happy Camper mode but, in reality, I was in a flat spin.

Every time I went in to deliver training, I thanked God for my earlier experience as a performer: the show went on but, behind my professional exterior, I was a wreck. It was a year of sadness and anger, of insomnia, of disproportionate physical fatigue, of disorientation, of not being able to retain information and having to rely on cheat sheets and palm notes (which I couldn’t read anyway because the words swam in front of my exhausted eyes). But somehow I scammed and improvised my way through.

I had to pretend to be cheerful in front of people although, God knows, I tried to avoid as many of them as I could. I acted as if I were calm and sociable and competent when, in actual fact, I knew myself to be a misanthropic cretin who couldn’t think my way to the end of a sentence. I was manky in intellect and spirit. And this was valid. How else could I have felt after being exposed to other people’s malice, or despair, or death?

But I lived in a world that needed me to be otherwise. And, if I wanted to leave my home to earn money to pay rent and buy food, which I vaguely understood that I needed to do, then I had to go out into that world and pretend that I was what it designated as ‘OK’. Whatever that means.

On with the motley. The show went on.

But this meant that I didn’t actually behave authentically unless I was at home all by myself, in which case it was OK to stare blankly at a wall, forget to eat, or cry into a pillow. Which meant that I felt like I was faking it every time I walked out the door. And that was actually what I was doing. Which meant that I was an impostor, a dishonest representation of another person – a happy, organised, palatable person.

Articles abound earnestly counselling us all to defeat our impostor syndrome – that furtive but insistently treacherous voice living in our heads that tells us that we aren’t really as good as others think we are, that our incompetence will be exposed any minute.

But when you are in grief, this voice is not treacherous as much as realistic. For most of last year, underneath my bonhomous and tidy exterior I was living as a crazed mess. How I functioned I don’t know.

Living with grief means living with many and varying moods, thoughts, and energies. It’s all a part of the necessary adjustment process that grieving affords. But because our society demands that we behave in ways that run counter to this adjustment process, being in grief also means that you live as an impostor, divided from the core of your authentic grieving self.

Female theatre mask Roman fresco from Casa del Bracciale d'Oro - Pompeii
Female theatre mask. Roman fresco from Casa del Bracciale d’Oro – Pompeii