At The End of Life

Louisa Leontiades Beastly & Beautiful, Professional Life, Random

She says ‘thank you’, at the end of my day. Her eyes are watery, and the hand she stretches out to me, shaky. And I feel her deep well of sadness mirror my own. I can’t reply truthfully. I can’t say, like so many other employees who might stand proud when they reply,

‘Just doing my job ma’am’

Because my job is to care for her and if I state the truth we both know, that I am just doing my job, she will feel unloved and uncared for. But I do not love her and I am paid to care for her.

I asked the universe for a job which put me deeply in touch with our humanity, something different from the impersonal financial analysis which disconnected me for over a decade from the impacts of my actions. What came back was this. Something where day by day, no matter how much I care for her, her muscles waste away, and we know, despite the false optimism we both muster, that soon she will lose this battle. She is hurtling towards the end of her life, and she can see it, as can I. Maybe that’s the worst part. She knows. And all my care will not prevent that from happening.

Being a carer is not difficult on paper.

‘You’ll be her arms and legs,’ her husband told me gravely as he scanned my face for signs that I appreciated the nature of the job, and the mental torture that it might put me through. I heard his words, and I understood. Like caring for a child, I thought. But I was wrong.

She is not a child. She is a fully grown adult. I cannot assume her agency, even if I already know what she is capable of. So I wait for her to ask for my help, as she attempts – pointlessly – to screw the cap on the toothpaste with her remaining good hand. I wait for her direction, because ‘arms and legs’ must accept their owner’s orders, they do not have a mind or will of their own. They do not judge, humiliate or act independently. I wait, spending days at a time, objectified in this fashion. Denying my own needs, desires and freedom to serve someone else. During this time I summon up every ounce of compassion I can, because I know how terrible she feels and it is within my power to comfort her by giving her my arms and legs so that she feels as if she has a little control over her life.

But as she forgets her words, changes her mind, and becomes more and more dependent on me, I get frustrated. It builds like a resentful furnace inside of me. I do things exactly as she has told me she likes. And even then, she decides I have done it wrong, because caprice is the only control she has left. The pillow is not right, the blanket too cold, too hot, the radio too loud, too quiet and this. This is her life and mine whilst I am with her. Every minute of every hour of every day. Then I feel guilty. Guilty because at the end of the day, I can walk away. I can take my arms and legs back. I can go out and feel the simple joy of movement.

Before I took this job, I was a social butterfly. I met with friends, went out in the evenings. Now when I get home, drained of any ability to care for anyone, I embrace my children. And I call up reserves of care I didn’t know existed. I care for them for another four hours before they go to bed, cooking, reading stories, wiping bottoms, washing and undressing. When I am done, I don’t want to see anyone. I don’t want to talk to anyone. I don’t want to be with anyone. I must care for myself. Alone. Because there is no other way I can survive.

She says ‘thank you’, at the end of my day. I hug her and whisper back, ‘you’re welcome’. I touch her face and smile to reassure her. I will come back tomorrow. I will be compassionate, respectful and kind. Despite my sadness and my frustration I will make the end of her life as comfortable and happy as I can. But some of the sadness I feel has nothing to do with her. It is the reminder, that perhaps one day I will be paying someone like me, to care.