My eldering journey has been quite an epic one.
It started over ten years ago with my Dad being diagnosed with MSA (Multiple System Atrophy), a rare progressive neurological disorder that impacts movement and autonomic functions, and ended last year with the sale of my late parents’ flat.
Five years after my Dad’s diagnosis, we found out that my Mum had Posterior Cortical Atrophy (PCA), a rare type of dementia that affects vision and spatial awareness, leading to difficulties with reading, writing, and recognising faces.
As with any journey, it has been quite a ride with some extremely bumpy parts along the way. Yet it has also been one of the most heartbreaking, humbling, and poignant experiences of my life. It’s shown me what it is to care deeply, to advocate with purpose, to confront mortality, witness death and its aftermath, and in turn how to live my own life with more intentionality and joy.
And out of all of this, I’ve learnt so much – that’s the thing about eldering, it changes you in unexpected ways. Now that I’m on the other side, let me share with you five things that I observed and learnt.
Dealing with diagnosis
Hearing that a parent has been diagnosed with a life-limiting disease always comes as a big shock, even if there were warning signs. There’s that realisation that their, and to some extent, your life, will become more challenging.
While I felt initial shock with Dad’s diagnosis, it was Mum’s about five years later that really hit me. I’d seen her take on the role of Dad’s carer as he became wheelchair bound – a gruelling and unrelenting job year in, year out, especially for a woman in her 70s.
So when she was diagnosed with the debilitating PCA it felt like a cruel blow. I felt upset and angry for her, believing that the stress, and interrupted sleep as a carer had, in part, contributed towards her own demise.
If there was one piece of advice about all of this, I’d say that once you’ve given yourself time to accept the situation, then start making plans for the short and longer term.
I wish we’d planned to move our parents sooner before they were unable to function in their three storey home. The process of selling up and moving into a retirement flat closer to my sister proved extremely stressful for my parents as physically and mentally they couldn’t cope with it.
Taking time out
As my parents’ needs intensified with hospital appointments, medical emergencies, and the additional emotional support they required, I really struggled to keep on top of my work as a self-employed PR consultant. I often felt overwhelmed and very conflicted juggling my work with looking after Mum and Dad, and it was becoming more unsustainable keeping clients (and myself) happy. Yet through my Dad’s final months and death, I continued on regardless.
I think in the end, coping with the loss of my Dad, and managing my Mum’s grief on top of her advanced Alzheimer’s, was the final straw. I had no energy or motivation left for work or even for pleasure by then. I felt completely drained so I decided to take a short sabbatical.
It meant I finally had time to look after myself, while also caring for Mum who was fading rapidly. It was one of the greatest gifts I could have given myself. It gave me precious time to be fully with Mum during her final difficult weeks of her life; to be there to hold her hand and reassure her in her most confused moments.
If things do get too much, I’d definitely advise you to see if there’s any way you can take some time out, even if just a few weeks. With me, it took some organisational and financial planning to make it happen, but it was so worth it.
Coping with grief
Dad died in February 2023, and Mum six months almost to the day after that. It was unsurprising really as their bond was so strong – they celebrated their 59th wedding anniversary a few days before Dad died.
Losing both my parents in such a short space of time, after a protracted eldering journey, really compounded my grief, especially as I’d not had much chance to process Dad’s passing. Yet despite this, I also felt relief that their suffering had ended.
I decided to get bereavement counselling to help me deal with all this, and it was one of the best things I did in my eldering journey. I personally found it an amazing experience, and would highly recommend it. Confronting and acknowledging the full range of emotions I felt around their loss, and the intensity and toll of the previous years of seeing them suffer, gave me perspectives and wisdom that I’d never expected.
I was even able to approach grief with a sense of curiosity; to see meaning and poignancy in certain moments and to embrace the whole process with gratitude and humility.
Embracing self-compassion
I think it is really important to have self-compassion during your eldering journey. Eldering is tough, and nothing really prepares you for it and how it’ll impact you personally.
Self-compassion helps you to treat yourself with the same kindness, understanding and care you would offer to a friend, especially during challenging times.
Being able to mindfully prioritise your own needs, soothe yourself when things are difficult, avoid judgement towards yourself (especially as there are tough decisions to be made) are the foundations of self-compassion during eldering. If you’re interested in finding out more about self-compassion and how it could help you, then I recommend meditations and books by Dr Kristen Neff and Tara Brach.
It also enabled me to avoid feelings of guilt around looking after my own needs. I went on a midlife women’s retreat in France during the year Mum and Dad died which helped my own wellbeing so much, and I also found time to write to process my emotions.
Staying curious
While eldering is a challenge, it is also a gift. Being open and curious about the process will bring rewards. I stayed curious in my eldering journey by asking my parents things about their life that I wanted to know before they died. I sought out their wisdom, and I talked to them about death – what they thought might happen afterwards (neither were religious) and what their wishes were.
These were precious moments of connection that I will treasure forever – and it helped to strengthen the bond between us.
Also, stay curious about yourself and how you’ve evolved in this journey – take time to ask yourself about what eldering means to you, how you have personally changed and what you’ve learnt. For me, I did this through my writing, but everyone is different and you may express yourself in other ways.
I believe that it is possible to lose sight of yourself, and your own needs, while eldering, yet being curious brings you back to nurturing and advocating for yourself. Time might be short with all your commitments, but going out for coffee with a friend or walking in nature can feel as good as anything else.
And now I’m finally on the other side of my eldering journey, I’m fully focused on my own thriving, and sharing my eldering experiences with others. Wherever you are on your journey, I wish you well and hope that you find a way through.
You can read my Fifty Thrive substack here where I write about my experiences of grief, caring for Mum, and my own eldering journey. I’d love you to take a read and feel free to comment, share or get in touch if my posts resonate with you.
