
There have been a few things rattling around in my brain lately. I haven’t been able to make any semblance of order out of them but I also can’t let them go. They come usually in the early hours of the morning when I am somewhere between sleep and awake. It’s an interesting time, this liminal space of consciousness, and I find the best ideas come through fully formed and if I am cognisant enough I write them down to look at when I am fully awake. While at the time they seem magnificent and life changing, when I look at them in the full light of day they tend to be less so, but still worth contemplating.
One of these thoughts that keeps coming back is around joy and delight. I started this Substack on that premise: my observations of joy and delight amidst the difficulty of caregiving. Lately, I have been finding it difficult to find joy and delight. Not because it’s not there but because the stress of the daily caregiving of my mother has ebbed and therefore my need to find these things outside of that has also ebbed. Whereas before it was a conscious practice and it gave my day some focus and meaning, let alone the joy and delight, but now my days are usually more manageable. And I have missed the practice of noticing and naming the joys and delights that weave through my day. This brings me to contemplate where to from here.
Another thing rattling around is regarding my sense of purpose. For the past three years my purpose has been tied up with looking after my mother and helping her to age in place in this house and on this land that my parents chose. It was not my choice - it was their choice - but it gave me purpose in coming back to America. When my mother went into care that purpose got severed really quickly. Or at least that’s what it felt like. It didn’t in actuality because I am still her caregiver and it is still part of my purpose of being here. But the enormity of that purpose in the day-to-day activities of keeping her safe in this place disappeared. And it left me spinning. It’s been just six months since we moved her and I am only coming around to feel like it’s safe to breathe. I am still putting out little fires but they aren’t all day, every day. They are more manageable and I have help in that she is in an assisted care facility where this is what they do. I am no longer alone in caring for her. But it was an abrupt shift and really did leave me reeling to figure out who am I and why am I here if not to be caregiver for my mother.
So much of our sense of who we are is tied up in what we perceive is our purpose. Even in society, often our worth is measured by what we do. I think about this as my sense of purpose is in transition and it feels like I need to grapple to find something quickly, something which makes being here okay. I realise that this is self-imposed and it makes me curious as to why this is important. Or not. A friend recently lent me a book by Viktor Frankl, ‘Man’s Search for Meaning’ and I am only part way through so far but it speaks to the importance of a sense of purpose to find meaning in life and therefore to feel engaged with life, I guess. Where the rub is, for me, is how we define purpose. I feel like society has one view of purpose and our hearts have perhaps a different sense of purpose. The practicality of these last three years has been straightforward and easy to define: looking after my mother. But my sense of my innate purpose is more intangible than that. And I now have some space to explore what that looks like. I feel drawn to being in this world with a purpose that is aligned with my heart. And that feels like it’s more based around creating art and holding healing space and connection and weaving story and love and a sense of place in my relationship to this place and with the people that are in my life.
For these last few years part of my sense of purpose has been to find joy and delight in the everyday and to share that through photos and writing, in this community as well as other outlets. I have enjoyed it. But I also feel like it is morphing. I feel like I need to step away to be able to get a different perspective to move forward. My vision right now is not so mono-focused on the care of my mother. I am pulling back to focus more on the care of me, and what that means and entails and what that might look like. I realise that this is a place that I have not been able to inhabit since moving here and I enter it with a ton of gratitude, and equal parts trepidation, that I have this opportunity. My nervous system feels like it is starting to calm down and I feel like I can see outside of just caregiving. It is a little bit uncomfortable because it has no boundaries. And like most people, I work better with boundaries. Now I get to create them for myself, at least a little bit.
Meanwhile, the sense of grief and loss is often unbearable and I feel adrift a lot of the time. My mother as anchor is slowly drifting away and that breaks my heart.


How lovely that your mum has had you to come home to care for her at her home until it was time to go to care. It's no easy task. I have just moved my mum from a big city to live across the road from me. She has early stages of dementia and I'm so relieved we moved her. I haven't lived near her for over 20 years as she lived near the rest of my siblings, but it's made a real difference for her to move into a small town and be a part of our lives here. It's not easy but the I feel grateful to have the chance to look after her and bring her some extra love and care in the years she has left. We never know what's ahead so it's just one day at a time.
I hear you, Susan. Significant changes can cut threads, making us feel adrift, untethered. It sounds like having this 'more-than-usual-time' to dedicate to yourself is giving yourself permission to explore and think more expansively - a little scary when you've had every minute prescribed before.
May I offer a book recommendation? As I know about your creativity, you may like to read Suleika Jaouad's new book 'The Book of Alchemy. A Creative Practice for an Inspired Life.' Her publication 'The Isolation Journals' is inspiring, and the book is full of beautiful story prompts for journaling. https://www.suleikajaouad.com/ It could be a catalyst for your thoughts. xo
P.S Suleika and her husband Jon Batiste use the phrase 'Creativity is an act of survival' and there is an alchemy in the creative act - something I think you would resonate with. BIG hug
PPS May I also suggest to relegate the word 'should' to being a swear word like I do - it sets an expectation borne more from society than being human in my book! Plus, I don't really thing there's a thing called 'normal' every day, moment and life is different! (in my opinion!) - Also pls feel free to ignore all suggestions!! xoxo