The Ugly Side of Caregiving

It is with great sadness that we inform you of the passing of Lisa Moran on June 6, 2023.  As a cherished member of LungCancer.net and a source of inspiration, Lisa generously and bravely shared her journey, touching and inspiring many in our community. Her courage fuels our mission, and her legacy will endure in our work. Her absence will be deeply felt, and we extend our heartfelt condolences to all who held her dear. We consider it a privilege that Lisa allowed us into her life, leaving an indelible mark on our hearts and our community.

Editor's Note: This article talks about relationship abuse and a person's experience in a toxic relationship. If you or someone you know needs support or resources, visit the National Adult Protective Services Association.

I see articles online and posts on social media of many stories and examples of loving spouses, friends, and family members taking care of their loved ones. Dealing with lung cancer seems much easier with someone by your side, genuinely caring for you.

My caregiver didn't care

I thought I had a loving caregiver. My boyfriend at the time and I had been together for two years when I was diagnosed with stage 4 lung cancer. He stayed with me and didn't run when times got tough.

I've always been strong-willed and independent. My ex-boyfriend never showed 100% support for me, my lung cancer fight, and advocacy. I blamed it on the disease. Perhaps he wasn't processing the stage 4 lung cancer diagnosis as well as I was. Turns out, he just didn't care. I went to all of my first diagnostic oncology appointments alone. If it was a procedure with anesthesia or a results appointment, my mother would travel to go with me. When he didn't want to participate in lung cancer advocacy and fundraising events, I went by myself.

When we are most vulnerable

I'm in several online support groups for my different medical conditions. Other than the fact that we are all in a particular group because of our diagnoses, I have noticed similar posts throughout the different platforms. The topic of these posts? Inadequate and unacceptable caregiving.

The stories of abusive and toxic caregivers are most upsetting. I've read posts about abandonment and neglect, leaving the survivor helpless and alone in their fight. Family members will distance themselves and even cut off all communications to the survivor. Other types of caregiver abuse are mental, physical, and financial.

There are situations when the caregiver is taking advantage of a survivor on Social Security Disability Insurance with limited income. Somehow, the caregiver feels worthy of free room and board and the survivor’s money. They live rent-free, not care for and steal from the survivor.

Scared to be alone

For years, I had the idea that living with terminal lung cancer and staying in a toxic and abusive relationship was better than being alone. Social media helped me share my positive outlook and good moments. Meanwhile, I kept the dark times and abuse to myself.

It took me years of reading about other’s abuse before facing my own. It was hard to accept and come to terms that it was happening to me. The hardest part was to verbalize it and tell others. When I thought I was ready, the real story and details just wouldn’t come out. Reading posts and stories from other survivors gave me the courage to put an end to my own abuse. The first time I was truthful about my caregiver abuse was in an online patient support group.

Being a survivor and not a victim

Essentially, I’ve been doing this terminal lung cancer thing on my own for 5½ years. But I’ve been doing it, happily, without the abuse or toxicity for almost two years. I identified the abuse, removed that person from my life, and took back my power.