Donna began her career as an actor, director, and teacher. After her son Nicholas was born with severe disabilities, she became a disability activist, author, and consultant. Donna believes caregiving is more emotional than physical, with 75% designated to emotional labor and 25% to physical work. She addresses the question of whether caregivers can “be real” and still provide loving care for their loved ones.
As someone who’s dealt with challenging caregiving experiences while caring for her son and mother, Donna, like many others, managed her own emotions, afraid of being real. She admits that the emotional work caregivers undertake requires them to hide their fatigue, their frustration, and their grief in order to maintain the person their loved ones need to see. Donna values the benefits of presenting her less emotional self to her loved ones, but despite this less-than-real aspect of caregiving, she points to the unquestionably real part of the job – the hard work that supplies emotional labor in caregiving
Donna explains how people who are cared for are completely authentic, and lack the ability to pretend they’re someone else. She contemplates her son’s abilities in this regard: “Is my Nicholas condemned to be himself? Can he put on airs?” She concludes that both her son and mother are completely themselves, “I’m surrounded by these people who are so authentic, and they bring me with them to a very authentic, truthful place.”
Donna explains that caregivers can benefit from practicing mindfulness, or slow movement. She deems this a more truthful way of living that focuses on caring and presenting your transparent self, and encourages you to put aside your ego.
According to Donna, caregivers should lose their ego to mindfulness. “Your ego … leave it outside and come in and care for each other,” Donna reassures caregivers.
“It frees you from needing to put on airs, or to reinvent yourself, and to be something or someone that you’re not.”
Donna understands the difficulty that comes with the sudden role change caregivers experience with the onset of a new diagnosis after an accident or trauma. She also knows the grief and fear that follows, but encourages caregivers to try an authentic approach when it seems like too much to bear. Caregivers can ask, “What do we have now? What can we do with this? And how can we be happy with that?”
“It’s about looking at what you have and seeing what you can do with it.”
“If you love someone and they need help going to the bathroom, or they need help having lunch, and you’re there with them doing it, you have to say: this is what we’re doing, this is okay. Let’s chat while we’re doing this … let’s reminisce, let’s talk about something we both love.”
How do you stay “real” while serving as a caregiver for your loved one? Do have any advice for other caregivers?
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