Maria Shriver on Being a Caregiver and Embracing New Challenges

I'm grateful for readers’ engagement and response to “The Sunday Paper” and for my work with the Women's Alzheimer's Movement, a labor of love that feels at times like a climb up Mount Everest. It's a very tough issue, and I have been on this path for 16 years, but it feels like where I need to be in that space. COVID-19 has been such a sad and isolating thing for so many, no matter who you are, and so I try to look to my work for inspiration, focus on family and friends, and stay healthy.

L.W.: You've spoken about how you and your four brothers took turns caring for your mother and your father as he battled Alzheimer's disease. What can you share with others about that time?

M.S.: That experience was definitely a learning curve for my brothers. They may have initially thought, Oh, you are the girl, so you can tackle most of this. But we worked out an equitable system. Before my dad got really sick, we instituted a weekly call for the five of us that was originally about my mom's health issues and grew to include my dad's issues. They were both in need of care and attention at the same time, and my brothers stepped up. The two in D.C. took on the in-person roles, and everyone had an expertise, which alternated at times. There were certain caregiving acts with my dad that only a son should and could do. In the end we all figured out how to come together and make it work, including my sisters-in-law.

Because we had already established a language between ourselves, when my mom got really sick at the end, we had built the system for the way things could work. My advice is that as your parents age start learning your siblings’ (or other caregivers) strengths, weaknesses and trigger points. Build the language and structure before you get to a critical point.

L.W.: Often after the loss of someone — or in your case, both parents — life is disorienting. What advice can you give us from your own experience about the aftermath of caregiving?

M.S.: At first I felt guilty at having so much time back. I hadn't realized how much of my days were involved with conversations with doctors and health care professionals. While caregiving [for] my parents and raising my kids, I often felt a constant sense of dislocation, like I was never in the right place. When I was with my parents, I missed my kids. When I was home with my kids, I worried about my parents back east. Everywhere I went, I felt like I was in the wrong place. It was a feeling of being between lives, and I had to adjust again when that stopped.

L.W.: You have honed your voice as a journalist, author, first lady of California, advocate for the fight against Alzheimer's and so much more. What are you most proud of in all this work?

M.S.: I'm most proud of helping to change the narrative around women and Alzheimer's, to put us squarely in the story. Changing that trajectory means that more research is being done about women's brains and how they age. I hope, at some point, I'll have a role in helping to find a cure.

Maria Shriver (right) with parents Eunice Kennedy Shriver and Sargent Shriver in 2001.

Ron Galella/Getty Images

L.W.: What is the best caregiving advice you ever received?

M.S.: When I was in the waiting room and my mother was in the ICU, a nurse came up and asked if I needed anything. There was someone whose mother was dying, and someone else had been in a car accident. I told the nurse to focus on them, and she said to me, “There is no competition when it comes to grief.” I grew up in a family where people negated feelings, and even though Mom was dying, I didn't feel like I deserved someone to come care for me or ask how I felt. It's important to remember, as the caregiver, that your pain matters, too. Don't negate your own feelings. If you are feeling something, then it's true, and you need to honor that. Remind yourself that you are doing the best you can — and that's all you can do.

L.W.: You are in a position to be able to afford top-notch health care, and your family has always fought for those who don't have as much. What can you share about resources for families in need of better access to health care?

M.S.: I am very proud to be chairing the governor's health care task force for the state of California, to help put a plan in place for the state, which I hope can be adapted for the entire country. We are working in depth to chart a path for people with limited resources — to simplify streamlined services and help them move forward as they navigate the system and as they age.