Our Caregivers: who are they, and why are they important?

Posted by Michael Collins in Life After Paralysis on November 09, 2017 # Caregiving

Somewhere out there, my next caregiver awaits. That lucky person doesn't know it yet, as it is likely that we have not even met; based on past experience, I know that is the case most of the time.

When it comes to experience with caregivers, I have had plenty during the past 29+ years. My quadriplegia means that someone else has to spend five hours each day assisting with many of my Activities of Daily Living so that I can continue to live independently. These individuals who support my life-sustaining care are unlikely to be called "caregivers" once they go to work for me. In the past I have titled my different Help Wanted notices--posted on college or hospital lunchroom bulletin boards, newspaper classified sections or (later) Craigslist ads--as seeking home health aides, personal assistants, attendants, personal care assistants (PCAs) or nursing assistants; I have tried to pick titles that would not be confused with other careers that did not involve the quad care that I need.

Looking back at the different backgrounds possessed by the people who I have hired to be my attendants during those three decades, there is a kaleidoscope of educational attainment and career choices involved. Since I only need someone to assist me for five hours per day, except when I travel, my needs create an ideal opportunity for those seeking part-time employment.

Some of those 'moonlighters' were students seeking medical field certifications or advanced degrees who just needed some extra money to help pay expenses. Others were teachers with the same goal, or people who were already employed as healthcare professionals like nurses, medical assistants, nursing assistants, therapists of all types (physical, occupational, massage) and even a physician.

During that time, I hired a semi-pro rugby player who had been dropped from his team following a career-ending injury; a self-proclaimed preacher without a regular congregation; a fireman who worked for me on his days off at the firehouse and the owner of a window washing company who worked his regular job at night. A school bus driver, the executive director of a Center for Independent Living(ilru.org) and a manager of a used car lot have traveled with me to provide assistance on business and vacation trips. Like the majority of my peers, there have been many occasions when family members or significant others stepped in to help out in an emergency.

There are tradeoffs involved when working as a caregiver for someone like me who pays for the service out of my own pocket. I cannot afford to provide benefits like health insurance or paid vacations; what I can do is pay a higher hourly rate that exceeds what they could earn if doing the same work for a home health agency or as a provider in a state's Medicaid-funded homecare program. The dozens of people who have been paid by me to provide that essential care have remained with me for various lengths of time; the longest was about seven years, but some only lasted one shift.

During the time that I have been disabled my attendant care costs, paid wholly by me, have equaled the price of a couple of nice homes. Has it been worth it? Absolutely, as without quality assistance from caregivers of all types, I would have probably been confined to a nursing home or similar institution. That freedom has allowed me to be employed so I could pay for the people who keep me healthy and living independently.

I am not that special, as my needs are the same as millions of other people in this world. Everyone who needs the same type of care deserves to have it available to them, even if their limited assets and incomes force them to depend on Medicaid or other support programs to provide that care.

The latest Senate budget bill would, if passed by the House and signed by the President, decimate Medicare and Medicaid as well as make healthcare unaffordable for millions of families. I know that I am not alone in my surprise, and disappointment, that those elected to lead our country into the future have chosen to do that at the expense of the health and freedom of our most vulnerable peers. Even if it appears that these changes will not affect us personally, I believe we each have a duty to help assure that there are no lives jeopardized in the pursuit of tax cuts. I hope you agree.

© 2017 Michael Collins

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.