My paralysis and the full extent of caregiver employment

Posted by Michael Collins in Life After Paralysis on October 26, 2018 # Health, Mobility, Caregiving

Since October is National Disability Employment Awareness Month it seems like a perfect opportunity to reflect on another aspect of disability employment: the valuable caregivers who work tirelessly to keep those of us who are paralyzed active and healthy. Without them, many of us would suddenly find ourselves a few days away from hospitalization for diseases or injuries of many different types.

While some of us may bristle whenever we hear the term 'wheelchair-bound' applied to us, we have an even greater fear of being 'bedridden' for an extended period of time. I cannot speak for the millions of others who are paralyzed from different types of injuries or diseases but, without my caregivers who have made sure that I was clean, dressed and out of bed on a daily basis, my life would have been far different to this point.

An honest reflection of what caregivers, or attendants as they are sometimes called, have done in my life is a lot more extensive than what this excerpt from a Help Wanted posting that I advertised in 2007 was requesting:

'Type of work: 'Quad care,' which involves transfers, range of motion, showering, toileting, bladder care, medication and light housekeeping, including some food preparation. You must be strong enough to provide unassisted transfers between wheelchairs and bed.'

Besides the general description above, my attendants have additionally done the following either once or--too often--more frequently:

  • Driven my wheelchair van, with me riding as a passenger, when I was unable to drive.
  • Assisted with holding the opposite end of the tape measure for numerous accessibility surveys that resulted in reports done as part of my former consulting business.
  • Refilled bird and squirrel feeders when empty.
  • Retrieved newspapers thrown in the driveway and packages delivered to the porch that I could not reach without that assistance.
  • Washed and dried laundry about three times per week.
  • Ran the dishwasher when full and put away clean dishes afterwards.
  • Prepared three meals per day, including lunch and dinner, so that I could eat independently at later times when spending the day at home.
  • Emptied garbage and recycling containers in the house, and placed the larger cans at the curb for pickup once per week.
  • Perhaps the most tedious of the jobs was accompanying me to several conferences and meetings of government agencies where I might need assistance during the meeting at unexpected times throughout the day.

I have also made several moves that resulted in a lighter workload or more entertaining activities for my attendants during the past three decades. Among those were construction of a roll-in shower, purchase of an overhead ceiling lift for my bedroom to take the work out of transfers, and multiple trips to 'fun' destinations like Hawaii (Waikiki Beach), New Orleans (during Mardi Gras), Orlando, Miami Beach, Palm Springs, San Diego, Hollywood, Las Vegas and Lake Tahoe. While there was work attending to me required at those destinations, a separate room and generous meal allowance on top of any payment for services required to care for me were my standards; I have even purchased airline or Las Vegas show tickets for guests that my attendants brought with them.

After I shared with my daughters the list of what my caregivers have accomplished for me during the past several years, they gave me feedback that could make my search for the ideal caregiver a success. Their list of the important attributes includes the following:

  • Smart - more common sense smart but educated would be nice.
  • Handy - can fix something without needing to tell them how or, better yet, just notice and fix it first.
  • Good attitude - someone who is content with their life...doesn't blame others.
  • Shares the same interests - loves sports, news, squirrels (and Cheez-its).
  • Kind & thoughtful - puts others' needs first.
  • Reliable - won't let others down.
  • Solid character & trustworthy.

In looking over all of those lists, I realize that the most important attributes are probably the last two bullets. The thing is though, those last two bullets really need to apply to me as well as a potential caregiver. The search continues.

© 2018 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.