One day you finally knew
what you had to do, and began,
though the voices around you
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
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.
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.
12 thoughts on “The Journey”
Di, thank you. For taking the time to read this, and for your love, support and prayers. They mean a great deal. Much love to you xxx
Hi Tink. What a wonderful testament to your Mum. You can feel your fierce love and support for her. And as you say Tink – you’re never quite ready. So be prepared to feel in shock when your Mum does pass on. And you’re right that the kindest thing to do, is to let her pass on now. We had the same dilemma and discussion about Dad. We also took the medical advice not to continue with the feeding, so we didn’t prolong his suffering at the end. All my love, prayers and thoughts dear Tink, for you and your Mum.
Thank you, my beautiful friend. Looking forward to that walk with you and Pan soon. And that extraordinary painting of your Mum’s is bringing such radiance to the house. Come visit soon? T xxxx
As I think you probably know, Kate, Lizzie, Jo and I refer to each other as the long long time friends. You, my very dear Hazel, are my long long time other-Mum. Your kitchen table, with Kate and Anna, was the best antidote I could have asked for to the unpredictability of Mum. Much love, always. Tink
Dearest Tink, such unbearable beauty xx you are so brave to stay so present and alive to this experience x your Mummy is so proud of you xxx
Beautifully expressed Tink. It is a privilege to share this journey with you, I love you both xx
Oh you would have loved so many of retorts. She was a master of them. Thanks, love. It helps to be able to share these things and indeed I hope that my experiences may be useful to others. See you soon. Xx
Nicci, thank you so much for reading this and taking the time to comment. I’m so sorry that the loss of your Mum was amplified by what sounds like enormously stressful family dynamics. I would love to connect. I’ll DM you on instagram with my mobile.Xx
Dear Tink, such clarity. I am glad to know how your mum phrased retorts, understand more of your contexts and see this beautiful photo of her as a baby. You can see her future self and daughter there. You write so well – usefully here to us other humans, as were the other major transitions you’ve shared. Love.
Think we are not familiar but knew each other in CHQ days. I have been through this with Mum a few years ago (although it’s still so raw) with the WORST family experience, but all the burden as the oldest daughter. Thank you for posting this and let’s please connect x
Long long time friend, thank you. No words to articulate how much I wish you were here too. And how I wish I’d been able to be there with you and your Dad.
Absolutely beautifully written. I so wish I could be with you now
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