When you suddenly find yourself thrust into the role of caregiver, how do you know what to do? Simple, says Chaz Ebert. You don’t.
“You learn,” says Chaz, the partner of the late, great film critic Roger Ebert for 24 years. She cared for him during a series of catastrophic illnesses, including cancers of the thyroid and salivary glands. “It was like being abandoned in a foreign country and you don’t know the language, and you don’t have any money, and you don’t know anyone there and you just have to wing it,” she says.
(MORE: Remembering Roger Ebert)
Portrait of an Enduring Love
The Eberts are the “stars” of the inspiring documentary, Life Itself, which premiered last year on CNN. Part portrait of the first movie critic to win a Pulitzer Prize and part portrait of an enduring love, Life Itself is often difficult to watch. Just ask the woman who is on screen for much of it and who begins this interview by saying she’s willing to discuss anything, with one caveat: “Please don’t make me cry.”
The toughest scene for Chaz to watch is the one that depicts a nurse and her bringing Roger home from one of his last hospital stays. Chaz prods Roger to get out of his wheelchair so he can make his way up a flight of stairs. He keeps refusing, angrily requesting a pad and paper so he can convey what he would prefer to do (the removal of his jaw prevented Ebert from speaking for the last six years of his life). Ultimately, it is Chaz who gives in.
“I know I look like a witch there, but I knew he had been doing physical therapy for weeks so he could do this,” says Chaz. “[Steve James, the film’s director] knew I was not happy seeing myself like that. But I said, ‘This is a fact of life. If we’re going to make this film, we need to show this.’ I wanted it to be authentic, because there are a lot of people who are caregivers or who are sick and I want them to see that this was not a bed of roses.”
Ebert’s ‘Do Not Resuscitate’ Order
Another tough scene in Life Itself occurs when James asks Chaz to discuss the ‘Do Not Resuscitate’ order her husband signed without consulting her.
“I was shocked,” says Chaz. “When I talked to Roger about it, he said, ‘I love you, but this is my life and this is my death.’ And he’s right. Each person has to make their own decision.”
Chaz made peace with her husband’s decision, but, as she says in the film, it was not easy.
“The day he was transitioning out, my first instinct was to ask the doctor to use the defibrillator. But then this feeling came over me that maybe what I should do is help him transition over to the other world,” she recalls. “It was shocking at first — this was the day I went to take him home; I didn’t expect him to pass away that day at all. So, at first, I did scream. But then this feeling came over me that was like a wind of peace. So I whispered in his ear and cradled him, and we got into a circle and held hands. It was one of the most beautiful things I’ve ever experienced.”
The Power of Positive Vibes
Regardless of whether the Eberts were at home or in a hospital, Chaz discovered that positive vibes made a huge difference for both of them.
“I really did need to weed out negative people in our lives,” says Chaz, who discovered one way to evaluate visitors was to see who was comfortable joining her husband in his silence.
“People sometimes turn away from people who have disabilities,” says Chaz. In her husband’s case, that sometimes meant that “they would feel like they had to jump in to fill in every second, because the silence was uncomfortable to them. Well, once Roger lost his physical voice, silences were meaningful for him. Sometimes, you are looking at each other and you just settle into that comfortable silence. That was difficult for some people.”
Forgetting to Care for Herself
Like many caregivers, Chaz admits she did not do a great job of caring for herself during Roger’s illness.
“It’s time for me to get back into walking and physical activity and taking care of my health,” says Chaz. “Thank God I’m in good health, but there was a time when his health was more important to me than mine, so I’m sure I neglected some things that I shouldn’t have.”
While now taking time to focus on herself, Chaz remains very involved in many of her late husband’s projects — his website, film festival and film projects — but, at 61, she’s also making sure she doesn’t stop learning new things. Within the last few months, Chaz returned to acting on stage for the first time since college and turned her attention to a book of her own.
She’s talking about learning to speak French and giving serious thought to a trip she and Roger talked about but never took — a light-baggage trip in which they’d stick pins in a map of Europe to decide where to go next.
What Chaz Would Love to See
Once publicizing Life Itself is done, Chaz isn’t sure where she will go next. But there is at least one more Ebert project she would get a kick out of seeing to completion. It also involves Life Itself director Steve James, whose previous films include trailblazers Hoop Dreams, Stevie and The Interrupters.
Chris Hewitt is a movie and theater critic who has written for MSNBC.com, Today.com and The History Channel magazine and whose reviews have run in newspapers across the country.
Next Avenue Editors Also Recommend:
- How This Wife Unlocked Her Husband’s Dementia
- Moving Beyond Grief After Losing a Spouse
- Must Read: Roz Chast’s Graphic Caregiving Memoir
- Welcome to Age 50: Top Caregiving Tips
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?