The Journey

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice–
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do–
determined to save
the only life you could save.

–Mary Oliver

Mum, on a trip together to San Francisco in 2006.

I write this today because I hope my experience with Mum, as she lets go and I support her in letting go, might be of help to those of you navigating similar territory. 

I visited Mum again last Friday at lunchtime and was concerned by how much food she is being given when in fact we’re trying our best not to prolong her suffering. On any given day Mum has been eating breakfast, morning tea, lunch which includes a substantial meal and pudding, afternoon tea, dinner and more pudding. Up until last week, she was also being given three servings of Ensure (high sugar supplementary food) per day. In other words, she has been consuming considerably more food, on a daily basis, than I do. The rationale for this was that a couple of years ago when she was pacing the corridors all day, she was losing too much weight. Now she simply doesn’t need that much sustenance to keep her comfortable. In retrospect, I could have – had I known my options – raised this issue earlier. 

Yesterday, I met with the wonderful Dr Balaram again. I don’t use that superlative lightly, I am so grateful that I don’t have to battle medical staff at this time (side note, I’m also well aware of how ‘lucky’ I am not to be battling other family members, it’s bloody hard as an only child, but this is one of the benefits.) Dr Balaram is very supportive of changing Mum’s daily food intake to the three small meals a day he thinks she needs to keep her comfortable. No pudding, no morning or afternoon tea. He removed Ensure from her chart last week. He said the fact that she’s not aware of being full is indicative of cognitive decline to the extent that her hypothalamus isn’t registering satiety. She’ll be kept on laxatives, again, this is to keep her comfortable.

We also made the decision yesterday to stop her anti-seizure medication. Instead they will give her something to make her comfortable if and when she has further seizures.

In Dr Balaram’s words, this is horrid. Honestly, I felt validated hearing him say that. It is horrid and yet my experience of modern medical science, and the institutionalisation and management of aged care, somehow makes me think that I’m supposed to be okay, even grateful, to the way her life has been – is – prolonged. Yesterday when I arrived Mum was lying on the bed in her room. I’ve been reluctant to post photos of her that paint a more complete picture because it’s so important to preserve her dignity but I am also familiar enough with her spiritual beliefs to know that she would say, rather imperiously, “It’s just my body, Tink, I’ll be off having a whopping big gin and tonic and watching Independence Day.” She loved big dumb fun movies. 

Mum is in this state, with the exception of brief moments, all of the time. She is lifted out of bed everyday, placed gently in a lazy boy chair, and wheeled into the common room for activities she can’t participate in and is as far as we can tell almost entirely unaware of. She can no longer walk and hasn’t been able to feed herself for several years. A carer sits with her at mealtimes, places food at her lips, she takes it, chews and swallows. She can’t see properly, she stopped being able to wear glasses years ago – she’d take them off and drop them. Yesterday, I had to lean right in, with my lips besides her ear, and say, loudly, “Mum, this is Tink”, her eyes turned towards me, but I have no idea if she has any idea who I am. I have no idea if there is really anyone there anymore or if her attention is reflexive. I keep coming back to the fact that over and over and over again, after she’d been to see her mother (who was in this state for years with Alzheimer’s) she would say “Don’t let me be like that.”

As we talked yesterday afternoon, Dr Balaram went on to say that – and I’m paraphrasing because I can’t remember his exact words – that at this point 40% of the patients journey is up to them and 60% to their family. He told me that “it’s great that you understand that your Mum is in transition” and I’m doing everything I can to support that. Many families, apparently, don’t. Dr Balaram said that he has had patients in Mum’s condition who’ve developed an infection and while arguably the kindest thing at that point is to do everything to keep them comfortable and let the infection run its course, instead the family are so desperate to keep their loved on alive, they insist on the patient being rushed off to hospital and put on IV antibiotics. 

Each situation, is of course different, in my case I am the only family here. We’re not having to wait for family to return from overseas, we don’t have religious beliefs that prohibit particular measures. I am my mother’s only only child and only immediate family in New Zealand. I have full enduring Power of Attorney (EPOA) and I know what her wishes were. Why am I writing this? I guess because I want you to know you have choices and to think through some of these before you find yourself in this situation, particularly if you have family to negotiate with.

I asked Dr Balaram yesterday if he has any sense of how long this might take. I find it helpful to know. This has been a long, hard road and while her death will not come as surprise and will be a good thing, it’s still – as my Aunt, my Mum’s sister, said to me the other day – huge. We both watched her mother, my grandmother, fade very slowly with Alzheimer’s and while it was in numerous ways such a relief when she let go, it was also suddenly a vast loss. Mum and I have travelled a rocky, rocky road together. She was an addict and like many that shared those challenges, she was charismatic, eccentric, smart and enormously funny….Often brutally so. But she was also my mother. I know, deep in the marrow of my bones, that she loved me with every cell of her being. Most of my life she had no idea how to constructively, healthily support me, her life was derailed by chronic anxiety and self-medication, but I know in her heart she wanted to have my back. I’m prepared for her death in so many ways, and of course, I’m not. We never are.

Dad died nearly 20 years ago. I spent a week, sleeping on the floor of his hospital room, as he moved on. Suffering from Lewy Body dementia, seven years after he was diagnosed and having lost the ability to walk and feed himself and talk but still with moments of absolute lucidity, Dad contracted an infection and made it very clear he wanted out. He was able to communicate that he wanted all food and fluid withheld. It took his body a week to shut down. Dr Balaram told me yesterday that he’s had patients like Mum who took 6-8 months to go. Unlikely, but possible. Unless she develops an infection following a seizure, which as Dr Balaram said gently, would be a blessing.

Where am I going with this?…

I find myself, this week, in need of space to integrate. To breathe and be still. I spent most of the weekend with my nose in a young adult fantasy book (delicious), ignoring the rest of the world as my mind and body and heart integrated this explicit shift to palliative care. As I sit with my mother while she lets go – over days, weeks, quite likely months – I find myself aware of how absent our crazy, overwhelming modern lives are of quiet and gentle rituals that help us process and integrate these big, beautiful – and sometimes horrible – moments.

Where AM I going with this?…

Talk to your family. Be as clear as you can about what you, and they, want at the end of your life and theirs. Write a living will. These are the discussions none of us want to have, but please, let my experience nudge you gently towards these conversations and decisions, as hard as they are.

Wrapping her in light.

“…so I thought: 

maybe death isn’t darkness, after all,

but so much light wrapping itself around us —

as soft as feathers —

that we are instantly weary of looking, and looking,

and shut our eyes, not without amazement,

and let ourselves be carried,

as through the translucence of mica,

to the river that is without the least dapple or shadow,

that is nothing but light — scalding, aortal light —

in which we are washed and washed

out of our bones.”

Mary Oliver, White Owl Flies Into and Out of the Field

Facebook. Instagram. Like many of you, I suspect, I have a love/hate relationship with these social media apps. But as someone who is fairly sociable and values connection, like it or not, I can’t quite step away…There is nowhere else I connect with quite as many of my favourite people, in one place at one time. So here I am, endeavouring while in these spaces, to post not just a bunch of pretty photos once every couple of months, but images that reflect the fullness of my life, of being human. And in that vein, today, a photograph of Mum with a happy little Tink, another taken just a few weeks ago and a simple image of a willow coffin.

My father who was both a vascular and general surgeon (the latter meaning he was almost daily at the coalface of life and death in A&E) rarely spoke about his practice as a doctor, but I do remember him saying once that he felt that the great failing of western medicine was its non acceptance of death. 

Mum has had dementia for at least thirteen years. She has been in residential care for six of those – five in the dementia wing, the last year in the hospital wing. For much of that time, she’s experienced 2-3 seizures spread fairly evenly over the year, in the last month she has had five. Her doctor called me on Friday to say he’d increased her anti-seizure meds and if that is ineffective over the next couple of weeks, he could switch her to a different medication. Medication which while possibly more effective comes with a range of unpleasant side effects including nausea. Mum had another seizure on Sunday morning.

Diana, my mother, is undeniably winding down. She spends most of her time asleep, she has to be bathed, toileted, dressed and fed. Feeding her involves putting a small mouthful of food up to her lips and like a baby bird she opens her mouth, ingests it and chews. She still swallows food but increasingly seems unsure of what to do with a mouthful of water. She cannot stand or walk. She is partially aware of people, and while I think there are moments in which she recognises those people she loves and has known for decades, mostly these days she seems to be not there at all.  

The last thing I want is for Mum to experience a range of very unpleasant side effects in order to potentially stop some seizures, when her mind-body is trying to shut down. She appears to have barely any quality of life. The reality is that she is dying. 

My wish now is to advocate for this transition to be as comfortable as possible. So to that end I had a conversation with her doctor yesterday, with an intention essentially to determine the choices ‘we’ can make in order to let her go. And how to keep her comfortable while that unfolds. I was expecting to be challenged, but her young doctor was wonderfully empathic and holistic in his approach. He suggested we keep her on the current dose of the anti-seizure medication, pull her off all other meds, including her supplemental food (which was prescribed to try and keep her weight up), provide water orally but not by IV and if she develops an infection (quite possible, apparently, with the seizures) she won’t be treated with antibiotics. I was enormously grateful to have with me my-other-Mum (mother of my ‘oldest’ friend and former next door neighbour) who is a retired registered nurse with considerable experience in aged care. 

The doctor gently said to me that it’s often helpful to let someone, in this situation, know they can go. I’ve been doing that each time I visit her, over these past several months. Telling her gently that I love her. Telling her I forgive her for everything – this being an only child of a mother addicted to alcohol and tranquillisers and then suffering from alcohol induced dementia has been quite the wild ride.

We’ve no idea how long it will take for Mum to go. It could be days, mostly likely weeks, possibly some months. So in the meantime, I’ll spend as much time as I can sitting with her and – spiritually, if not entirely practically – midwifing her death. I’m also now turning my attention, with a full if somewhat weighty heart, to what kind of ritual we’ll organise to farewell her and celebrate her life. On that note, by way of a somewhat abrupt conclusion to this wandering, I have some questions… 

Can anyone recommend a celebrant in Welington/Hutt Valley?

I’m interested in alternatives to conventional heavy wooden coffin – any thoughts?

For those of you who’ve been through this with parents or other family, is there anything you wish you’d known at the time? Or would have done differently? Equally, any thoughts on really lovely pieces of ritual you’ve been a part of? And I’m thinking about the whole process – from now through to a gathering after the funeral service.

Let me know if you have any thoughts – tink@pekapekahill.nz

Love,

Tink

When grief lies down

Picture this, if you will…An old woman, looking at the ground, is mindlessly walking loops of a communal living room, occasionally muttering something unintelligible to herself. Another old woman, still in her dressing gown at lunchtime, is sitting at a table hunched over a bowl of unidentifiable pudding, crying ceaselessly while she asks someone to “Make it stop.” An old man with a birds nest of dark grey hair falling to his shoulders (one assumes, from how well the residents are cared for, that this is because he’s a grumpy old bugger and his temperament makes a hair cut impossible) asks me, with deep concern, if I can please explain why he has had a tooth removed.

Grief.

For a while, I didn’t want to go and see Mum. It was too hard. Our relationship too sticky, the rest home too confronting. But then things shifted and softened and I found myself wanting to see her. And I thought to myself, with – in retrospect – a tiny amount of hubris, that finally going to see Mum was easy. Um. Yeah. Until it wasn’t.

Yesterday, I found myself doing loops around the dementia unit beside Mum not knowing what to say to her. Not that anything I say makes sense to her, it’s more about me being there and the sound of my voice, of course, but suddenly I ran out of things to talk about. I found myself wishing desperately that I had a sibling there to chat with while we walked alongside Mum. Someone to share this load with. But I didn’t, so I left. I went and sat in the car, cried quite loudly for a few minutes, was given gentle nudges from both collies, pulled myself together and drove home. Only to get grumpy with Adam because he commented, as we tried to listen to an interview together, that “I wasn’t really there”, to which I replied “I had a really hard visit to Mum but I don’t want to talk about it” because I really, really didn’t know what to say.

Grief.

A couple of weeks ago, at the end of a massage, my very lovely therapist was brave and wholehearted enough to not only acknowledge this post about the miscarriages but cry with me. She. Cried. With. Me. And I cannot begin to tell you how healing that was. But also how revealing it was to suddenly become aware of how much I’d needed that reflection. It was the first time in seven years since I lost the babies that someone has reflected my grief, with unapologetic and unembarrassed tears, back to me. The first time I really felt I had company in my grief.  

Grief is mostly a solitary thing in our culture, at least that has certainly been my experience. We grieve, mostly, alone. Behind closed doors, we hide it’s wholeness, it’s all consuming nature, from others, even those closest to us. Grief is awkward, it makes us vulnerable, inarticulate, tricky, puffy. There is a statute of limitation on grieving, after a certain time we’re expected to have pulled ourselves together and if not over it, at least have the good manners to hide it so it doesn’t make others feel awkward.

And yet awkward it is. Grief is messy and unpredictable, if often arrives unannounced. It is also very physical. If we don’t express it and instead we shove it down, grief resides somewhere in your body until one day – and that day could be a decade away – you accidentally squash a snail or drop a full jar of tomatoes on the kitchen floor and burst into uncontrollable sobs.

I am aware that friends of mine who live (or even those who are American and live elsewhere) in the United States are currently grieving for their county. I am aware that friends are navigating their way through the slow loss of parents to disease that comes with old age. I know that family and friends are grieving loved ones taken far too quickly by cancer. Others are grieving life changing transitions forced upon them by circumstance. 

Lately, sitting in quiet conversation with Adam, my parents-in-law, and some local friends, we’ve been sharing our grief about our dying world. We’ve come together to take part in an online conflict transformation summit but we’ve inevitably touched on the grief we all feel, and don’t quite know what to do with, while we watch ecosystems collapse as humanity accelerates towards the edge of the cliff. And while it is important, essential, wonderful (pick a word) to maintain hope, it is – I am increasingly sure – necessary to be true to your grief and find a community who can not only hold space but share it.

Grief. 

Are you grieving? 

Do you feel seen? 

Is there someone sharing your grief? 

Are you able to share the grief of someone else?…

“After a while, though the grief did not go away from us, it grew quiet. What had seemed a storm wailing through the entire darkness seemed to come in at last and lie down.” 

Wendell Berry, Jayber Crow.

Mum, at rest.

Do I want to talk about this? Yes.

25 June 2020

Seven years ago this evening I was lying, very uncomfortably, in a bed in the maternity wing of the Wellington Hospital having the first of three miscarriages. Adam’s still grumpy about the fact that the only thing they could find for me to eat was white bread and vanilla ice cream. As I lay there, ignoring the little pot of Tip Top’s finest and thin white bread which was tired enough to be curling up at the corners, a very dear friend was in a room at the other end of the ward with her brand new healthy baby.  The last thing in the world I could bring myself to do was let her know I was there, miscarrying.

Every year, on the anniversaries of three babies lost – 25 June, 22 September, 31 December – both Adam and I are tender. He’s currently lying by the fire, I’m sitting here, self-medicating with dark chocolate and wondering how vulnerable I feel like being this evening. Do I want to raise the uncomfortable subject of miscarriages again? I do, because here’s the thing…we still don’t talk about them enough. 

Women are left to process the grief and shame and sense of failure in losing a baby largely alone. There are myriad ways of experiencing infertility as a woman. I can’t speak to Adam’s experience, although I do know his is equally lonely and complex. Amongst all of my friends – and I am so lucky to have so many wonderful ones – there is not a single woman that I know of who shares my reality of recurrent miscarriages (and the subsequent hormonal rollercoaster) without a successful pregnancy to follow. Miscarriages without the happy ending.

We make our peace with how life turns out, don’t we. As you’ll see from the photos I post every few months of our life here at Peka Peka, it is beautiful. But it is not idyllic. Life is messy and behind the glorious images of sunsets there are trips to see Mum in dementia care, the wild ride of perimenopause (can we please talk about that too?!) and summoning the energy and enthusiasm to be a part of another conversation about the shared reality of motherhood while I sit there, very quietly, managing my grief and irrelevance. I may well have friends who read this, who have been aware of my journey over the last seven years, who can’t quite stop themselves from thinking “Jeez, is she still caught in that story? Hasn’t she finished grieving?” No. The answer is no. In the same way I still really – if not nearly so acutely or relentlessly – miss my Dad, I am still very sad we don’t have children. I wish we hadn’t lost our babies. I wish I didn’t feel so alone amidst the sea of mothers with children and their stories.

I’m posting this not because I want to check my FacebookDo tomorrow morning and see lots of notifications of comments of support. I’m posting this for two reasons. Firstly, if by any chance you share my reality and would be willing to have a conversation about it, I would truly, truly love to hear from you. Secondly, if you have experienced the grief of miscarriages, I would like to honour that grief. Whoever you are, wherever you are, in whatever situation, know that you are not alone. (P.S. Adam tells me I’m quite brave about having hard conversations and holding space for grief, so if you would like to talk, message me, I’d be honoured to hear from you.)

P.S. I wasn’t sure which photo to include, so chose the one from my library closest to the 25th of June, 2013. Adam and our fuzzles.

How lockdown breathed life back into ElementAll

At the beginning of this year, I made the decision to close ElementAll. Increasingly I felt torn between channelling my energy into the development of our small regenerative farm and community, and this small clothing company. As I looked out into an increasingly unpredictable world, in which we’re all navigating the chartered territory of climate change, producing a very small range of locally produced merino garments didn’t feel like the best path for me. Then Covid-19 happened.

Thanks to several weeks of lockdown, we found ourselves with time (how privileged my husband Adam and I have been to ride out isolation in this place, in safety and comfort) to reevaluate the way we’re living our lives, to reconsider our priorities. Time and a slower pace created some key pieces of self-awareness which have shifted my relationship to ElementAll.

The first realisation was that it turns out I’m considerably more extroverted than I thought I was. Which is apparently no surprise at all to Adam, but it was to me. I’m an only child, I absolutely need time to myself, but it also would seem that I need very regular connection (in person, Zoom won’t do) with people. This is directly relevant to ElementAll, as one of my seemingly relentless struggles has been the isolation. Doing it all myself, but most importantly ‘by’ myself, has made commitment hard.

In an attempt to solve the problem of feeling isolated (at least for the next few months), we’ve set up an informal co-working space in the living room of what was, until recently, our BnB. Serendipitously, a dear friend has moved to Waikanae from Melbourne for a new job and Covid-19 means she can now work remotely two days a week. However, her scrumptious 18-month old daughter (delightfully, my goddaughter) makes doing this from home a challenge. Solution? She now comes up here. It works for her but also having the company makes a very real difference to my motivation and enthusiasm.

The second key realisation I had during lockdown was the importance of logistics in getting things done. Wonders will never cease, you say, but bear with me. Adam, an experienced manager and facilitator, observes that people generally favour one of three ways of approaching problems. The first is strategic (looks at the big picture, ‘where are we going’), the second is tactical (how to deploy resources to achieve the strategy) or the logistical (who needs to do what, when and then the actual doing). I tend to address problems strategically – looking at the big picture is my happy place – then to a lesser extent tactically. Logistics, the actual doing of the thing, is the least interesting part of the puzzle for me and consequently my weaker muscle.  

Stay with me while I tangent briefly. Many years ago, in a former job as a policy analyst for the Pharmacy Guild of NZ, I spent six months working on pandemic planning for the Avian Flu. As soon as Covid-19 began to take off in Italy, my experience suggested that this could be very serious, even for New Zealand. As we moved through Level 4, I’d spend a couple of hours every day reading long-form articles from science writers and following family doctors, other scientists and experts in public health online. In addition, it turned out a friend was working as a key member of the team coordinating New Zealand’s pandemic response and we’d often talk as she walked home at the end of the day. 

As I read, listened and digested a lot of information, it dawned on me that the logistical response to Covid-19 was critical. The necessary strategy was fairly clear, the tactics super important, of course, but what was absolutely essential was a well-executed logistical or operational response. No good having a tonne of PPE squirrelled away in a warehouse somewhere if it’s out of date or doesn’t reach the medical staff on the ground. No good having an apparel company if I’m not attracting customers, ordering fabric and capturing essential data in Excel spreadsheets. Understanding the importance of logistics has reframed my relationship with ElementAll, which means that instead of focusing on the big picture, I’m going to spend three months on the nuts and bolts. 

The third realisation, triggered by a shift in my relationship to logistics and a growing awareness of the impacts of climate change, is that it’s all too easy to be overwhelmed by how much there is to do. I’d convinced myself that a very small sustainable clothing company was simply not enough and that it existed in competition with the regenerative work we’re slowly doing here at Living Ground. But of course, it’s not in competition, it can fit elegantly into our lives here. At this point, I honestly believe that every little bit each of us can do to make our corner of the world more sustainable (ideally regenerative) is worthwhile. We all still need good clothing.

My original intention with ElementAll was to create the most sustainable, resilient, and ethical little clothing business I could, and that hasn’t changed. The garments are still made in Wellington, by Jan and Marilyn at Stitch Products. While I dearly wish I could buy merino that was guaranteed to be New Zealand merino (NZ produced textile from NZ sheep), at this very small scale, I can’t. However, the ZQ merino I purchase from The Fabric Store is Australasian and ZQ prides itself on being the world leader in ethical wool. The Fabric Store – as ‘middle women’ (in the case of the lovely folk I deal with) – is a New Zealand owned and operated business about which I only have good things to say (click here for their statement on sustainability).  

As I launch myself back into ElementAll, logistics are my priority. I’ll continue to investigate my supply chain and work to make it even more sustainable, ethical and resilient. There are new designs in the wings (long-sleeved tops just waiting for a handful of samples and some promotional photos) for both women and men. I’m excited to share the stories of some of the remarkable women who wear ElementAll.

In the meantime, I’ll sign off with a bit of house-keeping, then a thank you note. The price of ZQ fabric is higher than the premium merino I’ve used before and the margin for the Fabric Store is smaller, consequently, you’ll see there is an increase in price for the cardigans. While the tunics remain at $150, the cardigans are now $195. You will also see that the colours have been updated. The ZQ range is larger than the 11 listed on the ElementAll website, and you can find the full range of ZQ colours here – if you’d like to order a garment in one of the colours we haven’t listed, just send an email to tink@elemental.nz. 

Finally, I’d like to say a very, very big thank you to those of you who have remained ElementAll cheerleaders. Jo, Adam, Anna, Emily, Emma, Tina, Stephanie, Ray, Kath and Vanessa. Thank you. Your support means more than I can say.

More soon.

Tink