practicing how to be human, end of life care, and this week's highlights

˚ʚ♡ɞ˚

Sep 14, 2024

hello and happy saturday:)

i’m trying to get better at identifying my emotions starting first with sadness. if i can learn to identify it, then i can place labels on them and if they have labels, i can learn how to talk about it. if i talk about it, maybe i will start healing.

it is interesting the ways our bodies cry out for its needs - a nap, a hug, a meal - and how over time we learn to bulldoze over it in order to continue running on the hamster wheel. so much so that we don’t even recognize our needs and the signs of it. the inner voice gets numbed out and our feelings can be a casualty too. in my journey of practicing how to feel my feelings, i’m starting first with recognizing what my body is asking for and giving it what it needs. learning how to listen and obey the inner voice again. the most basic human function i seem to have lost..or maybe something i need to find.

i think my grandma is nearing the end of her life, but no one is talking about it. after her fall in july, she seemed to return to normal spirits a month later despite her pain. then a few weekends ago, something changed. her pain levels worsened and she wants to sleep all the time. often she refuses to eat and spits everything out.

throughout her journey with dementia and parkinson’s and my journey as a caretaker, i sometimes think wow. i’m truly doing everything an able-body person would do independently but i’m doing it for her. and it actually isn’t until she gets worse that i think no no. this. this is almost everything.

i never realized how many steps it takes for one person to do a simple task until i had to do it for my grandma. from waking her up to physically getting her up by wrapping around her like a hug, using my strength to slowly sit her up making sure she has the stability to stay upright, swinging her legs from the mattress to the side of the bed. every step is prolonged because she needs to be ready for each one. sometimes convincing her to wake up is the longest part. i kneel by the side of her bed and with gentle strokes to the cheek, i whisper, “嫲嫲1. 嫲嫲…it’s time to wake up. it’s already late.” it used to be easier waking her up. i’d coax her with the idea of fresh coffee and bread waiting for her in the kitchen, and she’d beam with childlike joy. a content smile would slowly spread across her face and the light that would flash in her eyes was almost mischievous; i relished in every moment of it. it was so simple making her happy. sometimes if she wasn’t ready to wake up yet, i’d join and lay beside her. every few moments, i’d repeat my steps of whispering a slow wake up and describe the breakfast i’d make for her.

now it is not so simple. she can no longer taste coffee and she can’t swallow bread. i wonder if it’s because maybe there is nothing to look forward to and because every movement hurts, it isn’t worth it to start the day. coaxing can quickly turn into begging, bargaining, or lecturing. the line between talking to her like an adult versus a child is thin and blurred.

her smiles are rare these days and she barely raises her voice from more than a whisper. these days instead of pain management (the main focus of my family), i am wondering what loving end of life care looks like. what nourishment and comfort looks like in the midst of maintaining a functioning body. if it is in the quiet, long, and sometimes grueling stretches of time sitting near her and listening to her rhythmic breaths of pain and exhaust, or bringing spoonfuls of food to her mouth. is there anything more we can do?

health can never be taken for granted. i want to capture every memory. i love this little lady.