Issue #4. When your parent gets a terminal illness - what beauty can be found during this time?
5 positive things I’ve learnt so far when preparing for the death of my wonderful Dad.
They are the words from a beloved parent that we most dread as children…
“There’s something we need to tell you…”
And yet as we enter our ‘third act’, if we’re still lucky enough to have one or both parents, it’s a situation worth training for.
The sadness of the anticipated death of a loved one can not be underestimated. Tits to the Wind aims to seek out the hope, beauty and joy that can come in older age, and help each other prepare and get through it in a healthier way.
So in this issue, I wanted to reflect on some of the positives I’ve learnt in the last two and a half years since Dad’s terminal diagnosis.
If you’re going through something similar right now, or would like to feel less fearful and more prepared for when the time comes, this issue is dedicated to you. 💚
Everyone’s experience is unique, and this is a ‘training for ageing’ topic that we will be returning to again. We’d love to hear your own stories and reflections in the comments at the end in case they can help others.
With massive love and sisterhood.
Juzza
xxx
#1. It shines a light on what’s most important.
If you’ve ever dabbled in spiritual practice, this period of life provides a pretty intense opportunity for ‘re-remembering’ the good stuff. Those fleeting glimpses of truth and moments of joy now come to the fore for longer, more sustained periods, and in ‘glorious technicolor!’🌈
For me, this was an opportunity for buddhism on steroids!
#2. There’s a crack in everything, it’s how the light gets in.
A few years ago I did a TED Talk about my autism diagnosis and the benefits of being broken. It ended with the now much quoted - yet still beautiful- lines by Leonard Cohen:
‘Ring the bells that can still ring.
Forget your perfect offering.
There’s a crack in everything.
It’s how the light gets in.’
And oh how true! Over the last two years, I’ve witnessed a softening that can only happen in that sacred space created when hearts are breaking. An intimacy that’s only truly possible to reach when ‘the worst’ happens.
Nick Cave expresses this ‘opening’ and softening through grief so beautifully. Having suffered the loss of not just one, but two of his children, he somehow manages to still find meaning in his life. Check out any of his interviews in the links section (I loved this one with the Archbishop Justin Welby) and his blog ‘The Red Hand Files’ (thanks Jules for sharing).
When I helped Dad with his memoirs last year, I noticed this softening in him too, with a definite shift in his writing post-diagnosis. Chapters shift from what we would typically describe as ‘major life events’ - University, wedding day, birth of first child etc - to simply describing a moment in the garden.
“It’s a warm, sunny, early Spring day. I’ve been pottering in the garden doing small tasks and wondering at the complexity and beauty of the natural world. Several different clumps of daffodils are in flower, brightly coloured primulas of all shapes and sizes shine like beacons, cherry blossom is starting to appear and bird activity is increasing. A female blackbird adopted an old nest in the clematis and looks at us with her beady orange eye, pretending she’s not there. She’s vulnerable and we’re hoping for the best.”
This breaking open and softening can also create the space for a real deepening of relationships too.
With Dad, I noticed how quickly we moved from ‘passing the phone over to mum’, to him coming over to my house on his own. 1-2-1 time doing something together was something that Dad had always made a special effort to do when we were younger. I remember the thrill of him taking me out of school to see the first professional women’s open golf championship together. (My feminism started with him).
It was such a joy that following his diagnosis, we slipped back into 1-2-1 time again.
It was during one of these visits, sipping coffee together in my garden, drinking in the views over the Loxley valley, that he said he’d like his ashes sharing five ways. One ‘portion’ (?!) to go with mum, then some for each of us to put somewhere close by, so we could come and speak with him whenever we wanted.
And so ‘Dad’s Bench’ was born (thank you Neil! Apologies for such a difficult birth 😬). We even had a little opening ceremony to celebrate it.
Other relationships have deepened and taken on an easier, more natural form now too. I’m so lucky to have the best partner, Mum, friends, and the most amazing siblings, cousins, extended family and neighbours in the world. And now, as we each take turns to have wobbles or to step up support, we’re stronger than ever. This is a period where you’re forced to become more accepting of each other’s failings, to turn the other cheek and ‘let it go’. And I’m sure Mum would agree that our mother/daughter relationship has never been tighter. 👊🏽
#3. Learning to REALLY live with impermanence and be in the present moment.
As a (pretty crap) buddhist, I had intellectually embraced the concept of impermanence - of accepting change - in my 20s. But it’s one thing to intellectually accept impermanence. This rollercoaster ride FORCES you to practice LIVING IT!
This is impermanence cranked up to eleven. Changing goalposts… constantly shifting sands… you’ve just adapted to a ‘new normal’, when BANG, the rug is yanked from underneath you and there’s another set of unexpected horrors to adapt to.
The approach you need to take to the situation is constantly changing too. I’m noticing there are distinct phases within this period, and that a big part of our work as children is to learn to become more attuned to what’s actually needed in each phase, rather than forcing OUR solutions onto them and ploughing on regardless!
Mum sent me this Neitzche quote the other day that pretty much sums up where we’re at right now.
Mum has been such a tour de force during this period, and she says her love of the Stoics has been a great help to them both. Mum recommends this book: The Daily Stoic - read the page for that particular day and you WILL GET THROUGH THIS!
Perhaps the biggest ‘re-remembering’ for me whilst on this rollercoaster is the reminder that the best place to take refuge is in the present moment.
…oh and this one.
And now this one!
It wakes us up to accepting: “Oh, this is how it is now,” rather than wishing things were how YOU want them to be, or wishing things could go back to a previous state.
The Buddhist teacher Tara Brach speaks so beautifully about opening to the now. I found this recent podcast on the subject of ‘Hope’ or what she calls ‘Holy Hope,’ really helpful. (It’s 45 minutes and includes some guided meditation). 👇🏽
You might think that ‘hope’ is a strange word for this unique period in our lives, where death is the only certain outcome. But even though I am not religious, this idea of a non-egoic, non-clinging ‘holy hope,’ can help us be more resilient in times of great stress. Holy hope is what calls us to become all we can be. Holy hope is the trust in our own potential and unfolding lives.
And let’s face it. Anything that can help us be more at peace with this rollercoaster, and allows us to move through this period as more open and available, is a winner in my book. Thank you Tara 🙏 (You can subscribe to Tara Brach podcasts here).
#4. The beauty of ‘the circle of life’ and a chance to pay back the small intimacies.
Each time I get the chance to do a new intimate task for Dad, once I’m over the initial shock, I’ve noticed that I also get real comfort from it. I’m reminded of the last time we experienced these small moments together…but now in reverse.
It’s now me rolling socks onto waiting feet. It’s his arms held aloft as I try to gently pull his jumper over his head wondering why they make the head holes so small. Oh, and not forgetting the biggest role swap of all time, now I’M the one turning ‘that bloody heating down!!!’ So many small actions from childhood I now find us doing again, but in mirror image. Who would have thought I’d have had the chance to repay these small acts of interdependence!
As I bring over another half-filled cup of tea to Dad, I’m also reminded of my teenage years too. All the lukewarm cups of tea Dad brought us in the school holidays in a futile attempt to rouse us, along with a post-it note of tasks for the day (example pictured below!)
Now the house is once again littered with post-its, but now they are reminders to take drugs, or emergency numbers for the District Nurse and the hospice...
The other week, we took a trip out together to Greenlands park - the park behind the house where we grew up.
This time at the park though, neither of us are the child on the swing or the parent pushing them - we are both mere thoughtful observers. We watch them in a comfortable silence, both lost in our own thoughts… We walk slowly towards the football pitch where Dad would come and patiently practice hitting a hockey ball with me. Now we stand on the path, Dad leaning on his sticks, watching young boys engaged in a football match in the weak winter sun. The shouts from the gangs of parents swaddled in puffy coats on the touchlines waft towards us. Again, like a film vignette, I’m reminded of all those moments of mum and dad freezing their tits off watching me play hockey on the plateau at Dinnington, or rugby at the coldest places known to humankind - Scunthorpe, Newark, Lincoln and Ynysybwl.
Once again I am washed over by a wave of intense gratitude and love for him and Mum and for all those small moments once forgotten, now freshly remembered.
#5. An excuse to DO. IT. NOW! 👊🏽
When I asked for advice from the Crone Club Members Facebook Group for how to prepare for this time (🙏 ) many stressed a sense of urgency - ‘Do it now! They can seem well, but can decline really quickly’. ‘Clear the decks’. ‘Don’t wait!’
And so in that first year following his diagnosis, we didn’t just make plans, we actually DID them! And no one or nothing could stop us! We had a fabulous French party in Mum and Dad’s garden to celebrate their wedding anniversary, and me and my sibs turned up in France on their final holiday together to surprise them.
Another piece of advice from our Crone Clubbers Private Facebook Group was to have no regrets and to say what you need to say.
Needless to say, I did a PowerPoint 😳
Home is the people you carry with you.
I heard this phrase on the radio the other week and it made me cry - in a good way. Dad once told me that your relationship carries on with someone after they die, it’s just in a different form. And I know he and I take a lot of comfort in that. However long we have left together in this current format Dad, thank you. And after this bit is over,
I’ll see you at the bench. 💚
Helpful links for training
Online
The Krista Tippet Interview with Nick Cave on her podcast ‘On Being’ (thanks again to Jules for this).
Nick Cave’s blog ‘The Red Hand Files’ where fans submit a question and he writes them a letter back. Some wonderful responses in the archive on how to deal with grief and death.
The Justin Welby Interview with Nick Cave on Radio 4
This Cultural Life Interview with Nick Cave on Radio 4
Tara Brach podcasts on How to be at Peace with this rollercoaster!
Perhaps it’s not actual death we are afraid of. It’s ego death! Fear of losing our identity. Fear of what’s going to happen next. This is also brilliant! https://www.tarabrach.com/becoming-happier-conversation-tara-brach-arthur-brooks/?cn-reloaded=1
Being with Love, Death and Grief, a conversation with Tara Bracht and Frank Ostaseski.
Books
The Daily Stoic book by Ryan Holiday, Stephen Hanselman It’s just one quote to read a day, then implement throughout the day. 👊🏽
Handbook for Hard Times - a monk’s guide to fearless living. (Includes some meditations to help you handle sickness and grief).
The Power of Now by Eckhart Tolle - an oldie but a goodie - the bible du jour for anyone fearful for the future.
Devotions - the selected poems of Mary Oliver - beautiful poems about opening to what’s here right now and the beauty of nature. Includes ‘Wild Geese’, a fave of mine and Dad’s.
Sending Love&Strength ❤️
Sending love for this hard and beautiful time Justine. I lost my Mum to dementia last November and am now caring for my beloved mother-in-law in the final weeks of her life. So much beauty and exhaustion and love in the mix. xxx