Take Care

Last year my mother was diagnosed with stage 4 cancer. What had started as renal cell carcinoma had spread rapidly to a secondary brain tumour and cancer cells were beginning to invade her liver and other organs too. The speed at which she became desperately ill was shocking and she went from being a relatively active and independent woman to someone eventually needing round the clock palliative care. It was in the stages in between that I learned to appreciate just how crucially important the work of carers really is. They are a gentle army, each one a soldier fighting on the frontline but not on some alien shore or in a distant land; it is in the private sphere - the home - where they battle. They come to the sick, the disabled and the elderly to provide the care they need to live in their own homes for as long as possible. The heating pad, support cushion, walking trolley, grab rails and up-easy seats - their arsenal is vast, but these resources alone do not constitute care. It is in the actions: the washing, dressing, preparing food, feeding, cleaning, and, more than this, it's listening, soothing, advising, and reassuring. These soft skills are so unrecognised and devalued. Each carer I got to know possessed that all-important ability to subtly blend in to the family environment - adapting to personal needs which could change day by day and even hour by hour - and yet these professionals go unrecognised much of the time and are awarded low pay and, in society's eyes, even lower status. In my regular trips south to visit my mum and spend what time I could with her, I watched in awe at the extraordinary care she received. Each carer brought their own personality to the role and in the fearful new landscape of terminal illness, in caring for her they were also caring for me and my sisters. So this is a different style of blog post as what follows are the observations and descriptions of just three of these unsung heroes and my way of paying tribute to them and all those who care.

Ewa is all East European efficiency. She restores calm and order to the stress-filled rooms of my mother's flat. Her dark hair is tied back ready for business and her sharp eyes assess the debris from a restless night. She gathers up the plastic no-spill cups with a variety of liquids and dispatches them to the sink in one swift movement. Like some kind of Mary Poppins for the elderly, she is both stern and compassionate at the same time. She reprimands me, gently. In bringing Mum breakfast I have done too much. She must try to do things for herself - the things she still can. Ewa is right of course, by bringing her everything before she even thinks of it I am denying her the small remnants of independence she has left. With no need to think or move, the mind and body surrender more quickly. Ewa keeps to a well-timed routine and her orderly presence instantly settles mum. Though she is brisk and no-nonsense in her approach, her care never feels rushed and everything is completed with meticulous attention. She shares her wisdom and experience and I learn more from her in that short visit than I have gained from  reading the many NHS information leaflets or the euphemistic meetings with consultants. She has witnessed first hand how these last stages play out and by sharing what to expect she dispels the fear and her presence is a reassuring balm in such uncertainty. 

Jason bounds in with all the hopeful optimism and openness of a Golden Retriever. His kind and gentle nature overflows into everything he does. He manages to get mum into the shower and washes her hair, chatting away happily as though she were a client at the salon. This cheerful normalcy manages to eradicate any awkwardness - an essential trait for dealing with a woman from a generation that would otherwise be outraged by the idea of a man, who is not their husband, administering such familiar care! Jason does not do things as perfectly or efficiently as Ewa, in fact I think he inadvertently manages to add to the mess. It does not matter. He asks Mum questions about her life, examines the many family photos and personal trinkets with genuine interest. She answers with surprising clarity, recalling stories from the past about this one and that, showing him the pearl necklace from her wedding to my father. His care extends beyond that of the practical tasks; he reminds me of the importance of sharing memories - the reminders of happier times help to provide the resilience needed for what lies ahead. He admires the painting of my sister, the iconic Australian landscape in the background, and my mother, tired now, half whispers to him, 'She'll be here soon' and there is so much emotion in that statement that I have to excuse myself before they see me cry. 'Soon' carries all the implicit understanding that the ties that bind are about to be cut short. 

Katie arrives late and noisily. She breezes into the room bringing with her the potent energy so characteristic of Gen Z. Mum calls her a hurricane but I know she looks forward to her visit the most. Katie's pretty blue eyes sparkle with mischief and she tells us about her night out including the fact that she is somewhat hungover. She is without a doubt an oversharer and as she goes about her tasks she regales us both with hilarious stories. It is lunchtime and she investigates the frozen ready-meal options that have become Mum's staple. She describes each choice in a funny French accent as though in an upmarket restaurant and pulls faces to show her distaste at Wiltshire Farm Food's offerings. Mum laughs in delight and her face is momentarily transformed; instead of the grey pallor of disease, I see the vivaciousness resurface if only temporarily. As Katie clears away, she sings songs from The Lion King, her favourite musical. Her voice is pure sunshine. She has gone over her time but tells us that as this is her last call of the day she'll stay for a bit. She finds cake and cuts a slice for us all and I feel as if I'm at some strange kind of a party. And we are in a way; celebrating life and all its joys rather than bemoaning the turmoil and the heartache. Mum points out that Katie has used a saucer instead of a plate for her cake. 'What is a saucer?' she asks and Mum shrieks with laughter incredulous that someone Katie's age might not understand its function. It is a good day. Later as I see her safely to bed and kiss her goodnight, Mum is still smiling: 'Do you know,' she says 'Katie has no idea what a saucer is!' She chuckles to herself. 'That girl, she is something,' she says and my heart swells with more gratitude than I can hardly bear.