Two Mesothelioma Caregivers Share a Message of Hope
Amanda Parsons is perched on the edge of a chair in her parents living room. She’s holding a picture frame, but her eyes are focused on her mother, Inez, and father Billy Ray, who are sitting just a few feet away.
“She’s always taken care of us,” Amanda says, pointing to the old family picture in her hand. “It’s hard to let us do things for her.”
Inez St. John smiles and nods.
“I’ve always been independent and didn’t want anybody helping me with anything,” Inez says.
But since being diagnosed with pleural mesothelioma in November 2018, Inez has needed extra help.
“I have chemotherapy every three weeks,” Inez says. “I take the treatment and I’m down for about a week, and then I have two weeks to recoup.”
It’s during the ‘down’ times when Inez is fighting extreme exhaustion, nausea, and body pain that Amanda, her father, and her brother Rusty step in to help.
“With the first treatment, she was very, very sick. And over the course of the next few, we’ve learned to adjust medicine and things,” Amanda says.
Amanda and her family are learning quickly. Simple tasks like cooking, doing laundry, and tidying up the house are often overwhelming for her mother. So they stop by and step in, attempting to make daily life a little easier.
“It’s hard,” Amanda says. “It’s hard to see her so sick and helpless. You know she’s going to be sick and will be sick for days on end. We try to bring in food, we try to make sure she has her medicine or whatever she needs.”
One of the biggest challenges is convincing her mother to just sit down and rest.
“Just a couple of days ago we were here but didn’t know she was in the laundry room trying to clean the lint out of the dryer,” Amanda says. “She was in pain later, and we asked her what was wrong and why she was hurting. Then we find out she was cleaning out the dryer.”
Amanda shakes her head and laughs.
“We said, ‘we’re here! You just have to ask us and tell us to do things.’ But Mom is so used to doing everything herself. It hard for her and for us to delegate.”
From Spouse to Caregiver: a New Role
Mary Ramsey understands that independent streak all too well. Strong-willed is just one way she describes her husband, James, who died in 2008.
“He started getting sick in 2000,” Mary says. “But they didn’t test him for mesothelioma back then. They just noticed he had some fluid in his left lung.”
By the time he received an official mesothelioma diagnosis in 2007, there were tumors in both of his lungs. Surgery and curative treatments weren’t an option.
“The doctor took me and he pulled me aside,” Mary says. “He told me, ‘there’s no cure for it. All we can do is treat it and keep him easy.’ They sent us out with oxygen, 24/7.”
So the couple went home, and she stepped into her new role as a mesothelioma caregiver. Mary knew it wasn’t going to be easy. James had always been the family’s provider: the strong father, the working man, and the protector. He could accept his diagnosis but didn’t want to accept any extra help.
His condition deteriorated quickly, and the entire family stepped in to help.
“If he went anywhere he always had someone to drive him,” says Mary. “He would go out into the backyard and he would just fall over and we would have to call my brother-in-law to pick him up. He was an outside person. He didn’t like staying in.”
Identifying Compassion Fatigue
When her husband was fighting mesothelioma, Mary was able to depend on other family members who lived nearby. Amanda has a similar support system.
However, not all caregivers experience this level of family support. On average, a primary caregiver may spend upwards of 30 hours a week assisting a loved one with mesothelioma. Tasks like driving a patient to chemotherapy and radiation treatments and cooking and cleaning — in addition to caring for their own families and life responsibilities — can feel overwhelming and stressful.
Spouses or adult children who take on the role of primary caregiver alone often end up exhausted, depressed, and, at times, even resentful towards the mesothelioma patient.
In the medical world, there’s a term for that feeling of overwhelm: compassion fatigue. At the Mesothelioma Applied Research Foundation’s 2019 International Mesothelioma Symposium in March, a group of mesothelioma patients and caregivers led a panel discussion on the effects of compassion fatigue.
Signs of compassion fatigue include:
- Alcohol, drug, or food addiction
- Excessive anger
- Blame or bottling up emotions
- Sleep disturbances
- Physical and emotional exhaustion
- Isolating oneself
Constant stress isn’t always obvious, at least not right away. Emotions can build up over time, and if a caregiver doesn’t have an established self-care routine, it can take a toll on their overall health and wellness.
Handling Compassion Fatigue
Those who develop compassion fatigue often face a big challenge: how to care for their loved one and also take care of themselves. Fortunately, the condition isn’t permanent. Psychologists say the first step to dealing with this emotional and physical challenge is to step back and simply be aware of it.
4 Steps to Reduce Compassion Fatigue:
- Stay connected: spend time with people outside of the mesothelioma community
- Join a support group
- Establish personal health goals
- Schedule time for hobbies and other interests
Mesothelioma Caregivers: Staying Focused
Amanda Parsons and her family take Inez’s illness and treatment one day at a time.
“We don’t always know what each treatment will hold and how she’s going to do,” Amanda says. “It’s been a learning curve for all of us. But we don’t give up. It’s important to keep our spirits up.”
James Ramsey understood the importance of family. Before his death, he told Mary he wanted her to live with her daughters so she didn’t live alone. She kept that promise and has a message for families and mesothelioma patients.
“The only advice I could give is just that you have to deal with it and accept it within yourself,” Mary says. “I pray for anyone else who has to go through it. But you do what you have to do.”