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.

Originally posted at tink.nz.

“…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

Originally posted at tink.nz.