Compassion and Strength: A Mesothelioma Caregiver’s Journey

Cancer & Caregiving
Reading Time: 5 mins
Publication Date: 09/27/2023

In caregiving, love and determination are part of the job. Jennifer Deems’ journey is a poignant testament to the unwavering devotion between partners. As the wife of Daniel Deems, who battled pleural mesothelioma, Deems’ story exemplifies the profound impact of compassion, advocacy and relentless support.

An Unexpected Diagnosis

The bad news began when Daniel Deems needed emergency surgery after an accident, leading to the discovery of his cancer. 

“When they did surgery to repair his ribs, lungs and shoulder, they found cancer,” Jennifer Deems said. “At that point they didn’t know it was mesothelioma, but they did find places in his lungs and then the pleura lining his lungs. So that’s when they found the cancer.” 

This finding would be a pivotal moment that marked the beginning of their journey with mesothelioma. Deems turned to and was met with the comforting presence of Patient Advocate Danielle DiPietro

“When my husband was diagnosed with mesothelioma, I initially reached out to and met Danielle,” Deems recalled. “She talked to me and sent me all these resources. It made me feel a little better – ‘OK, there is help. There are resources available.’ 

“And then, within a couple of days, we had a whole mailbox full of articles and resource lists. [There was] financial or nutritional information or physical information and all these different resources,” she said. The information the couple received proved invaluable. 

Coming to Terms With Mesothelioma

The weight of the diagnosis settled in when one doctor offered little hope. 

“The doctor came in, and it was very early on in the diagnosis, and she said, ‘Oh, mesothelioma, I’m so sorry. I hope you’re getting your things together,’” Deems remembered. “And she was very out front and open with, ‘This is pretty much a death sentence, so I hope you’re getting your affairs in order.’ 

“When she walked out of the room my husband and I just looked at each other. We said, ‘Oh my gosh, do we quit? Do I quit my job? And we travel the world for however long and take advantage of everything we can with this time together? And that’s when it was real to us,” she said.

Deems witnessed mesothelioma’s physical toll on her husband in the following months. 

“In 20 months, my husband aged dramatically and just became very frail. And I remember the first time it hit me that he was not himself,” she shared. “I was holding his hand, and there were no calluses. He played guitar, did woodworking and did a lot of outdoor work. And he always had calluses on his hands.”

It was a poignant reminder of the toll mesothelioma can take.

Daniel and Jennifer Deems and children
Daniel and Jennifer Deems with their children.

Learning To Be a Caregiver

Navigating a caregiver’s role while maintaining the relationship’s essence is a complex task.

“Whether it be your spouse, friend, or mom or dad going through this journey, do not forget them as a person. Daniel, he was my best friend. He was my love. He was part of me,” Deems affirmed. “But there were many times when I got into the patient-caregiver role: ‘Have you taken your medicine? We need to call the doctor.’ You get so much in that role that you lose the aspect of this is my husband. This is the person I laugh with each day.

“And so that’s my one thing: Remember not to lose sight of who that person is, and also not to lose sight of who you are as a person because you become the caregiver,” she advised, shedding light on the delicate balance between mesothelioma caregiver and partner.

The Importance of Advocacy

As her husband’s battle with mesothelioma came to an end, Deems found herself grappling with grief and myriad emotions. 

“I did not want to hear the word mesothelioma for a while. I didn’t want to hear the word asbestos. I did not even want to say the word widow. I was in survival mode,” she explained. 

“It’s been four years now. Awareness is super important. Especially for people who don’t know about mesothelioma. When people ask me, ‘How did he die?’ and I say, ‘mesothelioma,’ they’re just, ‘Oh, OK.’ They have no clue.” 

Deems’ path led her to legal advocacy to seek justice for her husband’s battle and ensure support for her family’s future. 

“Get a lawyer,” she advised. “I was apprehensive. But now I’m very glad that we did reach out because your loved one may not still be around when the case gets finalized, but it will take care of [your] family in the long run. It will take care of the medical bills in the long run.  

“Don’t look at it as being selfish or just for the money. No, you’re doing it because you’ll need that money. You’re going to need financial assistance. And it’s justification. My husband did not deserve it. Their loved ones did not deserve that,” Deems emphasized.

The Deems’ journey as caregiver and spouse embodies the essence of love, advocacy and the enduring power of shared experiences. Their story paints a vivid picture of the challenges, sacrifices and unbreakable bonds that form the foundation of caregiving. 

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