When My Days Felt Like Months

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Blue. I’m a Gen X woman from Minnesota. I was a caregiver for my mom who had ovarian cancer.

What did your life look like when you became a caregiver?

I was a mom of three; two in college and one in high school. I was between jobs when my mom’s ovarian cancer relapsed, so I opted not to look for a new job.

My mom lived about 3 hours away with my stepdad. They had been married for about 4 years. I was grateful he was there to get her to all of her chemotherapy appointments and to be with her from day to day, but as she got sicker, he became a hurdle to clear communication. He was angry that he was losing his wife, yet my mom wanted and needed more help than he could give.

In the spring of 2019, she ended up in the hospital due to dehydration on the same day I was coming into town. She actually accepted my offer to stay with her overnight, which I was happy to do. I was surprised, as she had been letting on like things were going quite well. Turned out they weren’t.

From that day until the day she died over a month later, either I or my sister or both of us were with her. My stepdad didn’t appreciate the “intrusion”, but it’s what she said she wanted, so we made it work.

Thankfully, my husband could work from home, and my only kid living at home was of driving age. Otherwise, it never would have worked to be in the next state over for the better part of a month.

My sister had to take unexpected FMLA (Family and Medical Leave Act) time from her hospital job to be there. She lived 4 hours away from my mom’s house.

Who did you care for and what prompted their need for care?

My relationship with my mother was notoriously complicated. I was always closer to my dad while growing up; he died 18 years ago. My mom was likely mentally ill, but being of the Silent Generation, they didn’t discuss that sort of thing. She was volatile and lashed out verbally with a hair-trigger temper. She could be unbelievably manipulative. But she was my mother. I loved her.

What was a memorable learning?

My sister and I learned early on that my mom told us different things than she told her husband. Things like how she was feeling, whether she was ready for hospice, and her final wishes. It made for some uncomfortable conversations both before and after her death.

What surprised you about caregiving?

The emotional toll of taking care of someone who still had the capability of making me feel like a little girl. It really could mess with me mentally.

How do you try to balance being a caregiver while caring for yourself?

Books, podcasts, and Netflix. Looking forward to watching episodes of a series I’d already watched a hundred times gave me a sense of routine and constancy in a surreal world where a 24-hour day could feel like a month.

What advice would you give to caregivers?

Don’t be afraid to have difficult conversations with the sick person. If you are wondering about things like burial and headstone, and she won’t talk about it in front of you and her husband, call her out on it. It will save you so much grief down the road.

Is there anything else you’d like to share?

It’s hard to think past the sick person’s death while you’re in the dark days of caring for them. But you really have to step back now and then. Think about who you’ll be left with after it’s over, and what those relationships will look like without that person in the picture.

Sometimes the healthiest thing you can do for their legacy is to ask hard questions in the moment.