Help. Help. Help… Kill me. Kill me. Kill me… the words repeat again and again and again, mingling with the medical beeps and clashing sound of televisions and radios blasting up and down the corridor. I swore I’d never just walk past a room where someone was screaming, but after 3 months working in a care home for patients with late stages of dementia and terminal illness, the promise became harder to keep.
‘I’m here, it’s ok. Would you like me to hold your hand?’ The answer is almost indefinitely yes, even when the patients have no idea who I am. No idea that I have held their hand a hundred times before or checked behind curtains for the bogey man every day this week.
‘No, it’s all safe darling, you can rest now, and I’ll be back soon.’
I cried most days. At home in bed or behind the wheel of my car. My job was to give residents a life, a purpose for existing that went beyond having incontinence pads changed and pureed food spooned into their mouth by a disinterested carer, numbed by 20 years of overtime to the suffering that thickened the air. I’ve always soaked up the emotions of people around me like a sponge, so spending time behind the care home walls made me feel physically and emotionally ill.
I wiped tears, snot and dribble from countless cheeks and chins. I kissed brows, stroked backs and held hands. Oh, and I sat in piss. Not the watery, harmless kind of piss that barely colours the toilet bowl. I’m talking thick, sticky, reeking urine all over my bum and the back of my legs, seeping through to my pants and slowly drying throughout the day because I didn’t have time to go home and get changed.
I jumped up, too late, from the offending chair to find an elderly lady wandering down the corridors with nothing on her bottom half. She was upset so I took her hand and helped her get changed, not mentioning the tragic loss of my favourite lacy thong. Bodily fluids and wrinkly nakedness soon became quite normal to me, as I pulled a woolly jumper back down over a run-away boob.
And boy do those boobies change after a few decades! It’s kind of ironic that we wear supportive push up bras when they’re quite capable of holding themselves up, then by the time our nipples gravitate towards our belly button we can’t seem to bother with the things!
The world of dementia completely shifted my perspective on life.
It’s the number one reason for death in the UK and a staggering proportion of the population are living with it, and yet it is a disease played out behind closed doors and spoken about in quiet murmurs. I saw grief, as people realised again and again that the love of their life was dead. I saw the decline of health and of language. And I saw anger, from patients who thought the nurse’s medications were poison, designed to make them sick. Anger that lashed out to punch or slap me if it boiled too hot and fast
One patient was certain that the nurses were trying to kill him, and that I was the only person in the building that could help get him out. Do I tell him its all in his head, so he loses his only confident in a world where his murderers are all around him? I can’t. But I can’t feed his delusion either, in case it hurts him more. So, I took his hand and looked him in the eye. ‘I promise you, I will never let a living soul hurt you. I promise, I will keep you safe. I promise, I will do everything I can to help you’ The only comforting words I could find that spoke no lie but kept his trust.
It wasn’t all suffering, there was some joy to be shared too. The beaming face of a resident who found out we were taking her to the garden centre for lunch. Her light was positively shining out of her face with giddy delight as we fetched her coat and helped wheel her out to the disability bus. She hadn’t been out for a long time and she told me ‘I’m so excited’ about 5 times in a minute.
There was a quieter kind of joy too. Like when I played music to a resident who had long stopped speaking. He gazed up at the ceiling without expression but sang every word of ‘you are my sunshine’, fat tears pouring down my cheeks as I celebrated his moment of clarity. Or the moment I grasped hands with a resident who was shaking and rocking in his chair. He locked his eyes into mine and smiled at me. I’d never seen him smile before, and as he stared into my eyes I felt that he could really, truly see me and that I could really, truly see him too.
Other times, you just had to laugh. Like when a resident called me to her chair and grasped my hand kissing it and pressing it against her forehead. ‘Are you French?’ she asked me softly. ‘Oh no, I’m English actually.’ She shuddered and snatched her hand back away. ‘Then fuck off you fucking fuck.’ I couldn’t stop laughing in my surprise as she shoed me away and threw expletives down the corridor.
I could write a book about some of the hilarious, traumatising, sobering and heart warming things that I saw and experienced whilst working in terminal care. But I thought I’d save you some time and summarise my lessons for you:
- If your boobs can hold themselves up, you probably don’t need to be wearing a bra.
- If you got out of a dry bed, unaided, you’re doing well in life.
- If we are lucky, we are going to be old and frail one day. So, whilst you have strength in your legs, travel as far and as often as you can.
- All the money in the world will not save you from old age or from sickness. Always prioritise your happiness over material success.
- Be kind, always, there is enough suffering in the world.
- You must always, always live your life for you. Not for your parents, your friends, or your partner. Certainly, choose to sacrifice for those you love, but don’t ever let your choices be made by someone else.
Next week I will work my last shift. I will take my tent and a handful of clothes and I’m going North. I haven’t planned exactly where, or how. I only know that I am 24, I am strong and I am healthy. I have watched people suffer and die every day for months and I have learned that I am ready to live. We don’t get to do a rerun, to go back in time and prioritise joy once we realise the cycle of work, consume and sleep was all so utterly fucking pointless. I am so thankful that I have watched death so closely, because I finally understand that life is happening, right now.