​Caregiver: A Host of Titles

Posted by Reeve Staff in Life After Paralysis on November 23, 2020 # Caregiving

By guest blogger Sheri Denkensohn-Trott

“Caregiver” is a term that comprehends so very much – but not nearly enough. As a quadriplegic of 37 years, I should know.

There is no universal job description for a caregiver. Their duties vary depending on the physical needs of the patient (called “individual,” here) and available reimbursement (Medicare, Medicaid, private). Whatever their duties, caregivers are essential.Sheri and her caregiver

The choice of caregiver often turns on financial circumstances, and in some cases, provides a limited pool of choices. I have more options than others because I pay out-of-pocket for my caregivers. (As a former attorney for the Federal government, I don’t qualify for services through any program in Virginia.) While others may feel envious of my situation, it is not without stress. My excellent care has helped keep me healthy and hopefully, living longer. At the same time, my income stream is less, and my costs of living have increased. I find myself weighing my likely lifespan against my income and wondering when I might have to change my care model.

I currently have three caregivers; two have been with me for over 25 years and another over ten years. All three are from Sierra Leone, Africa, and are related to one another. I am consistently asked, “How do you keep the same caregivers for so many years? How did you find such reliable caregivers?”

Partly, it was luck. Initial contact was random, through the personal assistant registry of my local Center for Independent Living. Amy, my initial caregiver, and I hit it off, and she talked to other members of her family. Before I met Amy, I had never heard of Sierra Leone. It has now become my caregiving network.

Caregivers who are with you for long shifts each day become intimately involved in your life. This creates a tricky balance in maintaining the caregiver/ individual relationship. The person is caregiver first but also has the role of a friend, family member, and confidant. A caregiver witnesses what you go through each day physically. They are also with you at family events, celebrations with friends, and even work travel. If not managed appropriately, this dual role can implode.

There is no magic formula, but the following tips help me to achieve and maintain positive relationships with my caregivers.Sheri and her caregiver

Prepare a description of your typical day when you meet with a potential caregiver. For instance, you may require assistance showering and dressing, but also driving and non-typical health services. Make sure the person is aware of these ancillary duties, so they are not caught off guard.

Be clear on your priorities. For me, it is reliably high-quality care. You want someone who you can trust to look you over from head to toe daily. Make sure that if you need something important done for you, the caregiver takes it seriously.

Flexibility is key. Remember, your caregiver isn’t you. Realize what battles are worth having and decide when it makes sense to let things slip.

Treat your caregiver with respect. When attending gatherings that include family or other social and professional meetings, introduce your caregiver, and indicate how important they are to you.

Show appreciation. It doesn’t have to be huge gifts, but merely ordering a sandwich for your caregiver when you are getting one for yourself makes the caregiver feel valued.

Be transparent. That doesn’t mean sharing every aspect of your life, but when something is bothering you or relates to the relationship with your caregiver, talk to the person about it. Don’t let it fester and grow.

Accept that everyone has a bad day. Either the individual or the caregiver may be stressed out and inadvertently take it out on the other. An apology usually resolves the situation. Be tolerant, but make sure it doesn’t become a pattern for either of you.

Be fair. If you have multiple caregivers and they know each other, they are going to talk. It is not an easy process to navigate but do your best to treat your caregivers equally with respect to pay, and any other perks.

Remember, you are in charge. You rely heavily on your caregivers, and you must collaborate closely. But in the end, it serves you both best if you make the final calls.

As I age, my perceptions about the caregiver relationship continue to evolve. I often wish that when I started managing my caregivers at age 21, I knew more. You can’t go back, but, going forward, you can make modifications to keep this vital relationship flourishing.

Sheri Denkensohn-Trott sustained a spinal cord injury in 1983 and is a C4 quadriplegic. She practiced law for the Federal government for 25 years and started her own business with her husband (who also has a disability) called Happy on Wheels, LLC. Their vision is to inspire others, with and without disabilities, to live happier lives through writing, speaking, mentoring, and consulting. Sheri is a columnist for New Mobility magazine and a regular contributor to other written publications. Additionally, she is a motivational speaker, professional storyteller, and mentors’ students and individuals of all ages. She serves on The Advisory Board of the Rockefeller College and is also a breast cancer survivor and Ambassador for the American Cancer Society. Sheri is currently writing her first book. Sheri and her husband reside in Arlington, Virginia. You can follow them on all forms of social media, and subscribe to their newsletter by accessing their website www.happyonwheels.com.

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.