Monday 19 August 2024 felt like a day I needed to acknowledge. It marked six months since Mum came home after an eight-week stint in hospital. It also marked my own six-month anniversary as her full-time carer. Mum is 81 and has ‘unspecified dementia’. Caring wasn’t a journey I ventured into lightly, but it is a role I evolved into naturally, as a daughter, and with a keen awareness of what could be ahead.

In hindsight, that date in August marked a turning point for me. It was the day I moved into full acceptance of my caring role, and everything that that meant. I realised I had been dabbling around in victimhood, martyr-hood, and denial, and feeling lost and sorry for myself. I felt resentful about my own loss of freedom, and having to rely on others being there for me to do anything outside these four walls. I also felt angry at and let down by the care system and social services, who didn’t want to listen, understand, or, frankly, even care.

I realised that while this road I’m on is about looking after Mum, it is equally about looking after me. Almost overnight self care became a real thing, instead of a concept. And I realised that it includes prioritising the space for my own personal growth and betterment as a human being in service in this humbling and expansive way.

I realised I had been losing myself. Sinking. Sinking in the quicksand of forms and box-ticking, drowning in the oceans of bureaucracy, and fighting (and losing) an ongoing battle with inefficient care companies, all the while giving, or trying to give, everything I could to my role as live-in daughter, advocate, and carer for Mum. I realised I was becoming less and less able to keep my head above the water, and that something was going to have to give.

Monday mornings constricted my chest, twisted my insides, and sucked the life out of me as I envisaged another week of dealing with the business and bureaucracy of caring.

With every low – whether it was from living with Mum’s fixations, suspicions, confusions, memory loss or other novel but difficult antics, or from banging my head against a brick wall in relation to care companies not delivering – I realised that at times it was me who was starting to feel demented. The only course of action was to become more creative and intentional about finding new ways to nurture and nourish myself, while still being able to live up to my caring role.

I became more masterful about creating self care. People kept telling me to look after myself. This meant looking inside me, not at anybody else, for help, and remembering that only I am responsible for my self care. It was and is up to me to identify what I need, and how to find it. I don’t have the energy – mental, emotional, or otherwise – to fight a broken system, so I’m learning to conserve my energy so I have a healthy supply for Mum and I. I’m learning that, somehow, I need to be there for myself first.

There have been days where Mum has beaten me to an emotional pulp, throwing her confusion and mental contortions, paranoia and suspicion, antagonising and taunts, at me for hours on end, day after day. But there have also been days where it has been truly humbling and a massive privilege to have spent very special and close moments together, where we’ve laughed until our sides ached, or cried and consoled each other with love and hugs like never before. Or simply just had a really nice day.

It was allowing myself to feel through and express every single emotion of every single low that enabled me to turn that corner in August.

So what do I mean by becoming masterful about creating self care?

First and foremost, it was about becoming absolutely aware of everything that was going on and how it was making me feel, allowing myself to acknowledge and feel the feelings, and then looking at what I could do to create a different experience the next time round. It was about taking ownership and personal responsibility, and stepping out of the heat and stress into a position of acceptance or healthy detachment.

I’d already spent six months adjusting and readjusting, and becoming more and more, and more, flexible. I’d left planning behind as an old way of being as life became about being present, pliable, and instantaneous. I’m still learning how to live with so many different people coming into the house all of the time – as is Mum. I thrive on silence and isolation, and Mum loves being in her own space, so the situation we are now in is not natural or easy for either of us. I try to respect that we both need alone time as much as I can. Mum’s bed has become her haven, while my bedroom has become mine. I walk in there and I breathe. I feel myself start to ‘come down’, my nervous system starting to rebalance, my whole body – physical, mental, emotional and spiritual – start to slow and harmonise. I recharge and recalibrate.

This is not an easy journey. It is not an easy role. And the biggest lesson was something I learned early on – that a person with dementia may not remember what you said but they will remember how you made them feel. And that is the truth!

I am committed to keeping love at the core of our union. Mum is a human being who has given an immense amount to her world over the years, especially to her local community, and who is now losing her mind, her ability, her friends, and everything she ever loved. As she moves slowly towards the end of her life, it is my role not just to look after her and keep her safe, but to allow her the feeling of control over her life wherever I can – even if that looks different every day, every hour, every minute. It is my role to encourage her to make decisions when she feels able to, help her to maintain the small amounts of independence she has left, however delicately that has to be managed, and make sure she is fed a diet of nutritionally-balanced meals that she enjoys.

I continue to reach deep inside myself so that I can deliver on these responsibilities. Mastering self care also means having to look at what and how I eat because I know that some foods significantly affect my mood, mental clarity, and ability to serve Mum. I encourage myself to take a short walk whenever I am given the opportunity, rather than longing for a good hike which isn’t on the cards. I’m becoming much more mindful and allowing myself to explore and experiment with different ways of doing, being, and living. I’m also being careful about how much ‘extra-curricular’ activity I’m getting involved in, as I participate in studies and projects that are relevant and of interest to me. I’m watching my sleep, which isn’t great. And when I’ve been kept up through the night, I allow myself to lie down and rest when opportunities arise. It’s not right to project my tired irritation onto Mum when she’s also been up through the night, through no fault of her own.

As I shift my mindset and open my heart, I notice my resentments becoming observations that no longer touch me.

I am finding patience, kindness, gentleness and humility, acceptance, love, empathy and grace, compassion, commitment, assertiveness, sensitivity, and strength I didn’t know I had. I have let go of so much – mainly of the fight against Goliath and a system that I can’t change – so I can focus my energy first and foremost on Mum and I.

That doesn’t mean I sit back passively and let the system walk all over us; however, it does mean I no longer take anger and emotion into the conversation. I choose my battles, and I go into them assertively and from my heart. I feel more empowered and am learning to be inventive, and to ask for and receive help. And I am overflowing with indescribable gratitude for the two special people who go very out of their way to help me.

I’ve always lived very consciously but this journey is helping me to open my heart and mind wider, and to dig deeper inside my soul than ever before. It is helping me to create better intentions and become more mindful. If I can’t look after myself first, then I can’t do it for Mum.

As I take all of this seriously, I’m now emerging from the lows more enriched, more creative, more emotionally mature, and with much more wisdom and a greater life experience. The day that Mum went into the hospital system on Christmas day 2023, eczema broke out on my hands. It continued as Mum returned home and moved into the care system. But now, in the last few weeks, as I have given away the stress, resentment, and anger, and chosen an emotionally healthier route, my hands have cleared up and the eczema has disappeared. I am also becoming a better daughter, carer, advocate, and a better human being.