When were you diagnosed with multiple sclerosis (MS)?

I started having symptoms in 1984. I was experiencing pins and needles in my legs and difficulty with balance and speech. I also felt enveloped in a shroud of fatigue. Two years later, I was diagnosed with relapsing-remitting MS.

When did you become your mother's caretaker?

About seven years ago, when she turned 90. She was living in an apartment on her own in Massachusetts, and I was in New York. My only sibling and my father had both passed away, so I was the only one to help. My mom was starting to fall and exhibit signs of dementia and needed 24-hour care.

How do you help from so far away?

I ended up moving her to a nursing home near me. She was furious and insisted she could live alone. I felt guilty that I couldn't afford to keep her in her own home.

How do you manage your guilt?

I write—poems, stories, letters. That is a great catharsis for me. Two years ago, I wrote a book about caring for my mother called Without a Script: A Caregiver's Journey (ProPress Books, 2014).

How has having MS informed your caregiving?

I think it's made me more empathetic. As a person with MS, I know that I could need a caregiver myself. So I'm always asking myself, "What would I want? How would I want to be treated?" MS has also taught me to focus only on the things I can control. With my mom, I'm constantly asking myself, "What can I do within my control to make the situation better?"

What do you do to make your mom's situation better?

I play cards with her when I visit, and I do her laundry. She doesn't like how her clothes feel after they come back from the nursing home laundry, so I wash them for her. And I listen. I don't try to argue or reason with her, I just listen.

What else helps in caring for your mother?

Determination and a sense of humor. MS has made me very determined. I'll never give up on my mom. And humor helps. One day, my mom said she didn't want to do some activity with other nursing home residents because "they're all old people." I looked at her and asked, "Mom, how old are you?" And she said, "96." I said, "Well, you know, that's old." And we had a laugh. It's those little moments that keep us going.