I've had caregivers steal cash out of my backpack attached to my wheelchair; caregivers who are late, or no show altogether; show up with COVID; arrive with their child in tow as if my home was part nursery; spend their time talking on the phone or Facebook while not performing their job. The laundry list is long.
This last holiday season took the cake as I had a caregiver arrive at my home drunk for an evening shift. Smelling of alcohol, her eyes were bloodshot red and unable to focus. Being a direct individual, I asked, “Have you been drinking?" As she replied, "I've only had a couple of cocktails, but don't worry, I’ll be fine …” my heart sank. She was a new caregiver who had completed four months of intensive training to be responsible for four nights a week, a person that would save me from having to sleep in my chair at night.
In shock, realizing I was in a dire situation alone in my apartment with a drunk person now responsible for my physical needs, my heart rate went through the roof as I explained, “you have to be sober when you come to my home to take care of me.” As I sat in front of my fireplace, trying to decide what to do next, I was engulfed with an intense wave of helplessness and vulnerability.
Her behavior was slow and deliberate, trying desperately not to make a mistake while intoxicated. After tripping on the wheels of my wheelchair and bumping into my bed a few times, I was afraid I would be dropped on the floor during the Hoyer lift transfer. Luckily that didn’t happen, and after three hours and not much conversation except for an occasional yes or no, the shift ended. I was safely in bed. A casual goodbye and thank you were exchanged, and the caregiver departed my home.
The next morning, I sent an email requesting a conversation before her evening shift, with no response. That afternoon, I sent a text notifying her that her shifts had been canceled until we could have a discussion. Within minutes of realizing the gig was up, I received several scathing messages shading me for calling her off. She’d made me the bad guy... No discussion, no acknowledgment of her inebriation, no responsibility. It made my termination letter to her email that much easier.
The experience left a tight grip on my emotions. I had spent four months training this individual, and I was devastated to start all over again. It is a demoralizing and exhausting process that sometimes feels never-ending. But I have no choice. My safety is of utmost importance and a basic tenet when advocating for myself and my care in my own home. I can only hope the experience was one of learning for this individual, and I can check off this next example of my incredibly strange experiences living the life of a quadriplegic.