When a caregiver leaves

Posted by Elizabeth Forst in Life After Paralysis on May 17, 2019 # Mobility, Caregiving

I knew this day would come – my most senior caregiver who has been with me for over four years is leaving my staff. Not for bad reasons, just a natural progression of change, people move on, interests change, we evolve together yet we have to be prepared when we move apart. The only way to evolve and grow is to change, and that change is happening and staring me dead in the eye. It doesn't make it any less daunting and unsettling as the venture of finding a new caregiver in this day and age is like finding a unicorn… A rainbow colored unicorn. A rainbow colored unicorn that speaks English.

And so thus the last three months of my life have been 100% focused on finding a new caregiver, and my new unicorn. This process is lengthy, involved, complicated and requires astute intuition on my part as to the right fit to enter my life and team. I cannot just make a phone call to an agency or a facility and "order" a staff member; there are no clinics, hospitals or independent entities that provide such individuals. It is up to me to find this person, in whatever means needed. Craigslist, care.com, word-of-mouth, indeed.com, monster.com, Facebook connections, people out-of-state, people in-state, you name it I have and am doing it. You would think after three full months of this kind of searching in every nook and cranny of the universe for a new caregiver, that I would have a plethora of options sitting in front of me; yet the unfortunate reality is I have been unsuccessful in my venture. And not for a lack of trying…

The responses have been 50-50 with some applicants having a basic background in skilled nursing facilities – glorified old folks' homes – while others have minimal experience in the home health setting and even fewer with the spinal cord population. After posting flyers and electronic advertisements all over town, only a handful of appropriate candidates are chosen for a phone interview. On the phone, I tell my story – again and again – so the potential employee understands the complexity of my situation. Just telling the story repeatedly is mentally and emotionally exhausting; it's like reliving the injury and trauma over and over again. After the first call, the candidate receives my website address so as to peruse through my photographs, video and blog collection to further their own investigative research on me. If the person is still interested, an in-person interview is scheduled. A one-hour face-to-face interview comprises a tour of my apartment and another Q&A session of the job responsibilities, work experience and more importantly, allows me to size up the candidate – my intuition usually will alert me within five minutes of whether the candidate is worthy or not. The last piece of the interview process is a shadow shift in which the candidate observes an entire morning routine performed by one of my senior staff members. At this point, there has been enough back and forth between both myself and the candidate to confirm a good fit, so as to know whether to move forward with hiring.

This process is exhausting, draining the juice out of every molecule in my soul and working every last nerve.It challenges my faith in humanity as some people don't even show for their interviews after seemingly being so interested on the phone whereas other candidates get to the shadowing shift proselytizing interest in the position and then suddenly ghosting me not returning phone calls or emails. There is a tendency for lack of honesty in this process and coming from a very honest heart, this can be very disheartening.

After three long months of scouring Denver for my unicorn, the last woman interviewed was spinal cord trained, experienced in home health – so she said – and exuded a peppy and positive outlook on life. The only caveat, and there always is a caveat, was her extreme religious affiliations, rightfully communicated as my apartment is clad in Buddhas and non-Jesus yogaesque decorations. After a mutual understanding, we agreed we would not impart our religious values on each other and more importantly that I may or may not exhibit an occasional potty mouth, the deal was done and the job was filled. Alas, all of the hard work and agonizing hours of interviewing and scheduling paid off. And now we begin the training…

*Update: After five weeks of training and 19 shifts later working side-by-side training with my current staff, my new unicorn threw in the towel and quit over the phone with less than 24 hours notice. This job takes a special kind of person and she was not the one. The struggle is real! Demoralized, I return to the beginning…


The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.