For me, the beginning wasn’t too bad. Aside from some of my caregivers contracting the virus, COVID forced me to slow down, which was a good thing. Now, I’m used to hanging out at home, working from my home office, spending more time with my service dog and being OK with a slower life. And then the hammer dropped. I needed caregivers… And there were none.
Three of the eight members on my staff are students, and with COVID pulling back its grip on our lives, the students returned to the classroom and their nursing clinical this past fall, leaving me high and dry for help. As with any other time in the last seven years of my quadriplegic life, I started the search on my usual platforms like Craigslist, Care.com, Facebook blasts, word of mouth, help wanted flyer distribution, etc. Pre-COVID, I would have a deluge of applicants, chomping at the bit to learn new skills in the spinal cord care routine at a good pay rate with a flexible schedule. But this time, things have drastically changed for the worse. Simply put, there has been a giant exodus of caregivers.
I’ve spent the last couple of months searching high and low in all my usual places, yet no one trained in this type of care has responded. My new reality has me empty-handed with care coverage with fewer applicants and, even worse, applicants that have little to no experience. Some potential candidates responded that they no longer want to sit in front of their computers in whatever industry they are involved in. Now they want me to teach them the A to Zs of spinal cord care, not knowing if this is a life path or a job, they are prepared to take on… “But it sounds kind of cool. Can you teach me?” Four of the applicants found through Craigslist responded they did not want the job yet wanted a friend, asking me if I would be their friend because I sound like a person they want to know. A sweet and thoughtful sentiment, yet a dead end for my search.
I am not alone in this caregiver crisis. I hear from other members within the spinal cord community across the country who are all in desperation looking for proper daily assistance. We’re not talking about people helping us pick up our mail, prepare spaghetti for dinner, or do laundry; we’re talking about individuals who get us out of bed every day, assist in all our activities of daily living, including bathing, grooming and eating—survival stuff.
These challenges are real. This is a real crisis for those of us attempting to live an independent lifestyle from the seat of a wheelchair. Fear is a real thing in my life, and I am staring down the barrel of a gun some weeks having to stay in my chair overnight, not getting to bed due to lack of caregiver assistance. I have stayed in my chair for over 24 hours before. In addition, the caregivers that I have on my staff have been wonderful rocks of support, but they are getting burned out; I am fully aware that they also have their own individual lives with families and children that they must live in addition to assisting me on a daily basis. I would certainly be lost without them, and the layers of gratitude that I have for my current staff that has stuck it through these tough times of crisis goes as deep as the earth’s core.
The answer, I fear, will never be easy. We are in novel times with unchartered pathways going forward. Will caregivers once again return to our lives and make it easier and more facilitatory to live our best lives? There must be a way to put all our smart brains together as one to create a solution to problems that plague our community so deeply. How do we create a statewide or national directory of caregivers that want to work, that want to be trained, that might want to change their current vocational directions to help folks like me and others in chairs? There must be a way to solve this crisis, and I’m determined to find the solution. Let’s open the channels of communication and talk amongst ourselves; let’s create an answer to help our community find the best life that we always want to live.
