Bed Life and Beyond

Support workers come to my home every day, sometimes twice a day, depending on my level of mobility, to help me with my functioning. They’re essential to keep me alive. They’re by far the main people I ever see in real life.

It’s taken years to build up our team of support workers to where it is now. It consists of a close friend of mine whom I’ve known since she ran my daughter’s playgroup when my daughter was one year old, and several support workers from a caring agency for complex clients. My friend who is my support worker, started working for me before my government support started, when I was trying to fend for myself living upstairs in a split level unit in a wheelchair. She lives with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, so she needs to not overdue her work, and sometimes she has health crashes of her own and needs to withdraw from caring so much for me for a while until she can rebuild her strength back up again. We’re still trying to find a support worker for one day each week, and the worker for another day has only done one shift and needs some extra direction which will take energy. Another support worker is a bit careless with not leaving things accessible when she leaves, leaving items of her clothes on the floor where my wheelchair goes, and leaving things out of reach and in the wrong places in the kitchen so it’s hard for me to feed the cat when I’m up to use the toilet, or to get a drink etc.

Support workers are essential and they’re extremely helpful, but they also mostly take a lot of energy. Having people over every day is tiring. It feels like entertaining. Chatting with them and learning about their lives and coping with their judgements or whatever, it all takes energy. I would much rather do my own things myself.

I’m getting to know a second one of my support workers well. She takes time to be genuinely engaging, not judgemental or talking at me, but talking with me. She doesn’t sound like she’s wanting to live in my city permanently, so she’ll leave at some point. She does weaving so she’s very creative which I love.

On the days which I have support workers whom I don’t click as well with I just focus on getting practical jobs done which are needed to be done, then I send them home even if it’s a bit early.

What do they do here? Dishes, vacuuming and mopping, feeding the cat, patting the cat, brushing the cat, playing with the cat, changing the kitty litter, flushing cat poops (if my cat is anxious or meowing needy I tend to panic due to my childhood trauma, so the cat’s needs are well looked after), laundry (no ironing), picking up Uber Eats and bringing it inside when my daughter’s here, occasional simple cooking for me or my teenager (like Kraft mac n cheese or roast pumpkin and sweet potato), grocery shopping, picking up online shopping orders from shops, collecting my mail, sweeping outside, feeding birds outside, watering plants, helping cut my fingernails, helping me open mail when I’ve got somewhere to put it, helping me physically set up my medication for the week (I keep track of what I take and what goes in each container to take), taking rubbish out, cleaning their bathroom, changing linen, etc.

Because of my extensive childhood trauma I’m unable to tolerate people assisting me with showering. So my support workers don’t do this with me. Sometimes when I’m strong enough, my support workers will wash my hair in a tub of water while I’m fully clothed. And sometimes my support workers will brush my hair for me if my arms aren’t working enough. That’s all the personal care they do for me.

Have I tried a lot of support workers who didn’t work out? Definitely. Some had clear anxiety disorders, some challenged directions or just did the opposite, one was on an internet crime sleuthing group (and I’ve got crime in my background with my childhood history of trauma) and she was asking me direct questions about my trauma, one did an overnight and spied on me all through the night, two went home in the middle of the night- left their shifts without asking, etc ..! There are lots of people wanting jobs caring for people who are disabled, out there.

It’s vital the right people are chosen for their jobs- the right fits personality-wise and with training and motives and cultures. It’s important to keep trialling different support workers and different agencies sending them until you find ones aligned with your needs. Agencies go about matching support workers with clients, very very differently. Generally if an agency finds unsuitable after unsuitable support worker for you, they’ll continue in that pattern and I’d recommend trying a different agency to find your support workers through.

I’ve been really lucky to have some wonderful support workers over the years whom I’ve grown to trust and appreciate so much, and really love having around. Each time they’ve left, going into admin in their agency, or moving interstate, etc, it’s been incredibly sad For both them and me. We have to remember we could always meet another person that special again just around the corner. It happens on numerous occasions. There are more unique, really special people out there just waiting to find you.