I’ve been sitting on this post (or at least the intention to write it) for a couple of weeks. I was hoping to recover sufficiently from a bout of caregiver fatigue in order for my words here to be articulate and lyrical, but on reflection I’m just going to shoot for ‘good enough’.

Let me begin by saying, if you are low on bandwidth, the very short version of this is that if you don’t want to end up like my mother (arguably zero quality of life for the last three years) or me (spending much of my energy running a caregiving ultra marathon with no end in sight) or you want your children to avoid being in my position, I would highly recommend (so highly that if I could I would bust out the best song and dance routine EVER to underline it) an advanced care plan.

Mum is non-verbal. On the very odd occasion I think she might know who I am, but for the most part she doesn’t. She is bed ridden in dynamic air mattress which adjusts the pressure and shape of her bed in order to avoid bed sores. Most of the time she sleeps. She wears a nappy and all her cares – showering, toileting – are managed in bed.

Approximately two years ago, the rest home GP charted a fentanyl patch in response to Mum chomping her top and bottom teeth together, everyday, often for hours at a time, and heavily enough to be loud and quite distressing to observe. Lately, it seemed unclear if this was indeed a pain signal, as she was dosed up on fentanyl.  However, as one of the nurses commented, if Mum wasn’t in pain or distress before she started doing chomping, after an hour or so, she likely would be. Consequently if the nurse on duty agreed it was a good idea, they could administer a combination of morphine and midazolam. This required a carer, or a nurse, or me, requesting it.

I made the decision to move Mum from the rest home in the Hutt to Waikanae for two reasons. Firstly, I was tired of driving for two hours (there and back) to visit her, and it meant I was only visiting 1-2 times a week. Secondly, I disagreed with the amount of food Mum was being fed (i.e. often more than I eat in a day), and that she was clearly being woken by a volunteer to be proudly fed every last mouthful. To add to the darkly comedic aspect of this situation, towards the end, it appeared that this elderly volunteer was experiencing her own cognitive decline and was forgetting the instructions not to feed Mum. When I moved Mum to Waikanae, my very clear request was that the staff not wake Mum to be fed, and to give her small meals. 

The immensely tricky thing here is Mum did not write down any of her wishes or requests for the end of her life. After she watched her mother die a long, lingering death due to Alzehimer’s and my father die over seven years with Lewy Body dementia, she said to me – many times – “For the love of God, do not let me end up like that.” Watching Granny and Dad deteriorate was so anxiety provoking for her that she doubled down on self medicating life long anxiety with prescription tranquillisers and wine, which resulted in her own alcohol induced dementia.

A month after Mum moved to Waikanae, it became clear that there was disagreement within the nursing staff as to whether Mum’s signals (including chomping her teeth) indicated pain or hunger and/or thirst. Consequently the medical team decided to trial a week of responding, initially, to her agitation with food and fluid, rather than medication. It very quickly became clear that responding with food and fluid made no difference. So day after day, I advocated for Mum. “Hi there, Mum is chomping her teeth. It has been at least twenty minutes. Yes, she has had food and fluid. She is also grimacing. Yes, I’ve waited twenty minutes to see if the behaviour continues.” Sometimes, the nurse would take one look at Mum and instantly go off and get medication. Other times, I had to push. Which was fine until it wasn’t, and I lost my shit with the nurse on duty.

My meltdown followed having to argue with the same nurse three times in less than 24 hours in order to get Mum relief for the chomping and a noticeable escalation of agitation. We went through the same rigmarole of food and fluid + waiting + waiting. I think I managed to NVC (Nonviolent Communication) my way through that interaction so that I was able to express how I was feeling and request clarity rather than make it a judgment of her.  I am Mum’s EPOA (power of attorney) and not only have I been actively responsible for her care for 20 years, but I have a legal responsibility to stand in her shoes and advocate for her best interests. I became emotional, raised my voice, and went in search of the clinical manager. The nurse practitioner was consulted and Mum is now on another hospice med called Haliperidol, also for agitation. The new drug is charted to be given routinely to her twice a day rather than on request.

Mum is gradually losing interested in food. During a meeting with the clinical manager, the GP, and the nurse practitioner in early April, it was explained to me that every single dementia patient is different, but around 95% (might have been higher) inevitably get to a point where they simply close their mouth and refuse food or fluid. Mum is not there yet, she doesn’t really want food, but nor is she refusing it. She’ll happily take one mouthful, but then softly close her mouth. However carers are instructed to jiggle a spoonful of food against the patient’s mouth to encourage them to eat. Like you would with a baby. Except Mum is not a growing human, she is dying. 

The morning following my meltdown, Adam and I met again with clinical manager for the rest home and were joined by another senior manager, also a nurse. For much of the meeting we talked about the new medication, hospital wing processes and how all of Mum’s nurses and carers are now required to fill in a detailed form after they have attended to her, so the staff learn Mum’s particular signals. To be honest, I don’t really recall much of what was said until I asked the following question “Do you want to end up like this?…” And both women responded, quick as a flash, with a very decisive no. “God no”, one of them replied vehemently “I’ve had my advanced care plan in place since I was forty.”

Everyone has been very clear that there is no intention to prolong her suffering, and yet this is arguably exactly what the system is doing. “I promise you Tink, we’re not trying to prolong her suffering” said the nurse practitioner. Long pause. “And yet here we are” said Adam. No response. The clinical manager said that at the first sign of her refusing food, the treatment plan will change, but until then we wait. I’ve been told it likely won’t be another ten years, but it could be two.

I asked the senior nurse we met with, if she would be willing, after all this is over to meet with me and chat through my own advanced care plan. Her response was don’t wait until this – with Mum – is over. Do it now. None of us know what will happen. Let me also add, in a moment of being very pragmatic, it is also expensive. Just the last three years of no quality of life, have cost us over $200,000. Mum would have been the first to say “God no, darling, pull the plug and go to Italy.” Truly, she would. I’d certainly say that to Adam. Go live, let me go, don’t just stand around watching me die, it’s all so very boring, she would say. 

But for now, with Mum, without any advanced care plan we wait.

And I learn.

To be stroppy.

How to recognise non verbal pain and agitation cues – both general and specific to Mum.

The names of pain and anxiety meds.

Exactly the right questions to ask carers, and nurses, and doctors and lawyer.

I learn to ignore, then not even smell, the scent of wee and cabbage.

I learn to ignore the cries and shouts and moans of other patients. 

I learn to be genuinely amused by Mum’s neighbour, a distinguished old gentleman who regularly shouts out “Singapore!”

I visit and check Mum is comfortable. I quietly watch her shrink and fade and begin to swallow less well. I light a candle, water the cyclamen I bought for her room and now call her Diana rather Mum because she clearly responds more – in an animal roused from a deep, drugged sleep kind of way – to her given name rather than who she was to me. I talk to Dad. A former doctor who once said to me that he thought the great failing of Western medicine was its non acceptance of death.

Things are a little easier after my shit losing. She is definitely more settled, less agitated. We’re building clearer communication and trust amongst those of us involved in her care. I’m reassured that she is more comfortable. I still have to turn a blind eye to how much food she is still being ‘encouraged’ to eat. But I’m also choosing to pull back. Somewhere in all of this Mum has to have the space to die. I have to let her go.

There has been no shortage of people offering advice…
“Have you told her you love her?” (plot spoiler, yep, repeatedly)
“Have you told her you forgive her?” (plot spoiler, yep, repeatedly)
“Sweetheart, you just have to let go” they say, to which I carefully maintain a neutral facial expression and respond sweetly with “If only it was that easy.” It is not. But now, I think I have to find space for me to live and for her to die. 

Maybe, after all this is over, I will look back and see the Glorious Grand Plan in it all. The strange beauty that sits alongside the horror. But in the meantime, you can be sure as hell that I will also – in addition to the emotional, psychological and spiritual navigation – put an advanced care plan in place in order to do my very best to ensure the people who love me don’t have to go through this. |

Again, click here for information on how to create an advanced care plan.

Me ~ “I can’t get in to see Mum unless she is actively dying.”

Phil ~ (housemate), wryly – “Aren’t we all actively dying?”

Two weeks ago, I visited Mum for the first time in eight long weeks. Most of my absence was due to lockdown and all visitors being shut out, except family of a resident considered to be ‘actively dying’. Mum whilst in palliative care, as yet does not meet the criteria of 48 hours out from dying. Omicron marched through the whole facility (rest home, dementia unit and hospital wing), catching the vast majority of staff and residents, leaving them mostly no worse for wear. Mum barely had a runny nose. The facility re-opened but by that stage, I had covid, and while relatively quickly free of symptoms, I needed to wait for a negative RAT. Last week, the rest home dropped the requirement for RAT tests, closed the MASH like tent outside the front door, and opening hours have returned to normal.

Seeing Mum after two months, it is clear she is now approaching the end, and consequently I’m getting my ducks in a row for the end of her life. She would approve of the metaphor. She loved ducks. One year, two ducks waddled up from a nearby creek, everyday, and poked their heads through the cat door of our family home, quacking for bread.               

Recently, our family doctor came to dinner, explicitly to have a conversation about death and dying. Pam, Adam’s Mum, was successfully treated for cancer last year. Brett, Adam’s Dad, had an aortic aneurysm op the week after Pam finished treatment. The dominant culture of the West avoids talking about dying and death, we have a heavily medicalised healthcare system that seeks to prevent it at all cost. My father, who as a general surgeon worked at the coal face in A&E, once said that he believed the great failing of Western medicine was its non-acceptance of death.

None of us get a pass out on this one. Death is a rite for us all, wherever we believe that passage ends.

Paradoxically, the more we’ve talked about dying and death as a family, the more life affirming it seems to be. Brett all but skipped up to the cottage after our ‘death & dying dinner’, saying afterwards that he was on a high. Removing the matter from such taboo territory is enormously reassuring. Having an emerging sense of the questions we can ask, the answers we need, and the rights we have and are almost completely unaware of, provides both clarity and comfort.

Pam and Brett are now in the process of writing their advanced care plans. I didn’t ever have that conversation with Mum, although more often than not, we drove away from the rest home after visiting her mother who had advanced Alzheimers but a remarkably strong heart, and Mum would turn to me and say “For the love of god, don’t let me end up like that.” But she didn’t put her wish in writing, and we never talked discussed specifics. Which means I need to make decisions. Being an only child with full Power of Attorney continues to be generally lonely, but the bright silvery lining is that I don’t have to negotiate the hard stuff with any siblings or other family.

This has been a long and winding road, and I’ve learned…A. Lot. Mum was officially diagnosed with vascular (alcohol induced) dementia in 2009, although in retrospect she was showing signs well before that. I had her cared for at home for six years, firstly by two wonderful women who shared the role as Mum’s ‘companion’ (phrased that way for Mum’s acceptance), then additional women as the role transitioned from companion, cook & driver to a more intensive caregiver role. In April 2015 I moved Mum into dementia care, and from there, five years later, when she could no longer walk without the support of two people holding her up, into the hospital wing. 

Over the last two years, it has been a steady and often heartbreakingly slow decline. Mainly, it would seem – ironically – because she has a strong heart and has continued to eat like a trooper. Not because she really wants the food or needs it, but as an automatic response. You put a spoonful of food up to her mouth, and like a baby bird, she takes it in. When her doctor and I realised, about a year ago, that Mum was being fed breakfast, morning tea, lunch + pudding, afternoon tea, dinner + pudding and nutritionally complete milkshakes in between, we were both horrified. 

The degree of honesty with which the rest home GP and I have talked, his kindness and his willingness to not prolong her life at odds with her wishes, has been a huge relief.  This same doctor gently said to me, as covid took off in the rest home, that it would be a blessing if the virus took her. They would ensure she was kept comfortable but we would let her go. However she was so mildly symptomatic, this obviously didn’t unfold.

Now, regardless of covid, Mum appears to be winding down into her final weeks, possibly a few months, maybe days, it’s hard to tell. She has two small meals a day and is now sometimes declining to eat. Her teeth are fairly grim, she was going to a dentist at the hospital regularly but covid disrupted that, and her gums are very inflamed. Constant clunking of her teeth suggests she’s in pain, and so the doctor prescribed her Pamol last week, but it had little effect and she’s now on half a fentanyl patch. This seems quite a dramatic upping of the ante in terms of pain relief, but the panadol wasn’t touching it and when I drove across to see her yesterday, I was greatly relieved to see that she was in deep sleep, her face devoid of any tension. When I relayed this update to my godmother, a dear friend of Mum’s for 65 years, her response was “Free of tension sounds like everything we would wish for everyone we love.”

Ritual is important to me, and after speaking with several people, including our family doctor, a registered nurse at the rest home, the funeral director and a friend who teaches about end of life care, I am clear that taking things slowly, and using ritual to create a sense of the sacred, will support my grieving process. I’ve begun to light a candle when I’m with Mum. I’ve created a spray with essential oils of lavender, chamomile, sweet orange and eucalyptus which I mist into the room when I arrive. These actions, and other pieces of tiny ceremony, help me land, move more slowly and hold space for my mother.

Not that long ago, before healthcare was this heavily medicalised and funerals were commercialised, the local midwife midwifed the dying. A local carpenter would be asked to make a coffin. Funerals and the wake would be held at home. Over the course of the last several days, I’ve met with a lovely funeral director and she is helping me think through a number of decisions I need to make, about the end and celebration of Mum’s life. 

As I move through these days, I feel as if I have a foot in two worlds – one in the human, very material world full of logistics and practicalities, with respect both to Mum and ordinary day to day life, and another in the sacred and spiritual. This seems to take a considerable amount of my energy. My osteopath told me last week that my heart needs support. It does. I can feel stretching, expansion. Like a vast old theatre, I’m discovering a wing I didn’t know about, full of songs and new stories.

In spite of resembling both Eddie and Patsy from Ab Fab too often for comfort, Mum was at heart a romantic and one of her favourite pieces of poetry was from Dylan Thomas…

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Along with the caring but clearly overstretched staff in the rest home, I am endeavouring to create a space in which Mum isn’t burning or raving. Somewhere neither of us rages against the dying of her light. Instead, I am trying to build a place where the deep comfort of darkness is held in equal measure with both the light that still glows softly in her, and one big and brilliant that maybe illuminates worlds beyond the veil.

I keep asking questions. I keep listening for the answers. 

From experts and elders, from my own heart.

I’ve been sitting with these thoughts, with this piece of writing for the last few days. I hadn’t set out to write a blog post, just some thoughts for a facebook post to share with friends. I’ve been wondering how to conclude. I’m tired, and inspiration for eloquence and good editing is a bit thin on the ground at the moment. Should I inject a bit of black humour? No shortage of it at this end, and Mum more than anyone would be encouraging that. Do I need to, in some sense, apologise for the morbid subject matter? Do I fall back on a much loved piece of poetry? But I think I’m just going to leave it at this and simply say that many of you make up my community…Some I see every day, others every week, most of you more irregularly. But there is a thread of connection with each of you and I’d be very grateful if you’d give it a gentle tug. 

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

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.

“…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

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.

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.