Caring for a Mesothelioma Patient
The daily tasks of caring for someone who has been diagnosed with malignant mesothelioma can be overwhelming.
Besides dealing with your own emotions, fears and uncertainties, you will find yourself responsible for many daily tasks, managing appointment schedules, remembering medications and treatments, dealing with both medical and legal professionals, bathing and feeding your loved one, and managing their financial affairs.
All of these responsibilities are accompanied by dealing with the realization that you and your family’s lives are forever changed. It is important to understand that caregivers will understandably feel occasionally frustrated, lost and burned out.
The Journal of Oncology Practice in 2018 published the results of a survey that showed caregivers reported having up to 15 mentally unhealthy days each month, which can lead to many caregiver struggles.
It is vital for caregivers to find support for themselves and to take care of their own needs while caring for a loved one. The quality of the care that someone can provide will be affected when they feel tired and overwhelmed. There are many places caregivers can turn to find support. They can also learn about actions to take that can reduce the risk of being overextended and becoming ill.
Those who step up to care for someone with mesothelioma are often family members, friends or community members.
The primary caregiving role is usually filled by spouses or adult children of the person with mesothelioma. Siblings, friends or neighbors often take on secondary caregiving roles. In a 2021 research study, females scored higher than males for engagement while caregiving.
Spouses tend to take on the primary caregiving role when their loved one is diagnosed with mesothelioma. It is important for them to develop a network of support to avoid taking on too much work, which can lead to caregiver burnout.
“Once you get the help you need, there will be time for you to rest, which is vital if you are to care for yourself and your spouse,” said Lorraine Kember, who served as a primary mesothelioma caregiver to her husband Brian.
“Over the two years of Brian’s survival, grief was my constant companion, but Brian’s courage and will to live, despite the ravages of his disease, helped me find the courage I needed to support him and make it possible for him to pass at home as I had promised.”Lorraine KemberMesothelioma Caregiver
Adult children may find themselves taking on primary or secondary caregiving roles for their parent with mesothelioma. These roles may require adult children to visit regularly or live with their parent to provide daily care.
“Caring for an ailing parent isn’t usually in our life plan,” said Melanie Ball, who served as a mesothelioma caregiver to her father. “It is helpful to take a team approach when caring for a parent. This approach divides tasks among several family members, easing the stress and resentful feelings endured by the primary caregiver.”
Siblings may also serve as a primary or secondary caregiver to their family member with mesothelioma. Mesothelioma is most often diagnosed in the elderly, and patients may have siblings living nearby who want to help.
A patient’s brothers or sisters often have an instinct for how to meet their sibling’s caregiving needs.
“Regardless of his mesothelioma diagnosis, Brian wanted to act and feel ‘normal,’” Kember said. “Knowing her brother better than anyone, [his sister] Pat understood this and continued to act in exactly the same way around him as she had always done.”
Friends of mesothelioma patients often want to help but may not know how. Asking the patient or their primary caregiver about what kind of help is needed is a good place to start.
When Darlene Micciche was diagnosed with peritoneal mesothelioma, her friends helped out a lot with meals.
“It was so helpful because my husband doesn’t cook and I couldn’t do it,” Micciche said. “All my friends signed up for dinners, and every day, someone came with dinner. I always had leftovers the next day for lunch. It really took the pressure off.”
Because mesothelioma rarely occurs in people under the age of 60, it is uncommon for parents to serve as caregivers to a child or young adult with mesothelioma. However uncommon it may be, when it happens, it can be very hard on parents.
It is helpful to build a network of family and friends to provide parents with emotional and caregiving support. Hiring professional caregivers or home health aides may provide extra quality time for parents and their children.
“Randy lived a lot while he was dying,” his mother, Melany Baldwin, said. “Right ’til the end, he was always, ‘OK. We got another day. What do you want to do?’”
Five Things Caregivers Should Do
Find a support group
Family and friends mean well and can be a great comfort, but there is no substitute for the experience, advice, and support one can find in others who are dealing with the same issues. Mesothelioma support groups are available online and locally, depending upon location. Check with an oncologist for referrals.
Take time off when available
Even a few hours away from the house can help lift your spirits when life becomes overwhelming. Health insurance, including most publicly-funded health care plans, often includes coverage for respite care so caregivers can take time off.
Caregivers should consider hospice care when their loved one becomes eligible because it offers specialized care for mesothelioma patients. Statistics about hospice care show there were over 4,800 Medicare-certified hospices in the U.S. in 2019, when the last count was published.
Take the time to eat properly
Good nutrition is far more important than most people realize. When your time is consumed with taking care of someone with mesothelioma, it is easy to forget to take care of yourself. Make healthy, nutritious meals for both yourself and your loved one. You will both find it much easier to cope with hardships when the body has all its nutritional needs met.
Find ways to reduce stress
Many choose to meditate, pray, read, exercise or take a walk. Stress and anxiety are constant factors when dealing with a terminal illness. Try to find an effective method of dealing with stress and practice every day. Some people find relief in meditation or yoga. Some turn to prayer for spiritual support. Others find that something as simple as a daily 15-minute walk helps reduce the stress and anxiety they are experiencing.
Ask for help
It is not a sign of weakness to ask for help when feeling overwhelmed by your caregiver duties. It is even more valuable to be able to ask for help before reaching a breaking point. If friends and family are not available to help run errands or take your place for a few hours so you can get away, there are other resources you can access. Volunteer groups provide meals and daily visitors, and your cancer doctor or mesothelioma lawyer may be aware of many resources in your community that can provide respite care and other services.
If you feel guilty about asking for help, remember that doing everything by yourself leads to burnout and deprives others of a chance to serve. Very often, there are people in your life who want to help but do not know how. Let them know the help you need so they are better equipped to meet both the needs of you and your loved one.
“Caregivers should make a list of practical needs: Help with grocery shopping, picking up prescriptions, etc. When someone says, ‘Let me know if there’s anything I can do,’ caregivers can suggest from that list.”Dana NolanMental Health Counselor
‘Lean on Me’ – An Inspirational Story by Lorraine Kember
For Kember, becoming a caregiver was an easy decision. Her husband was diagnosed with pleural mesothelioma after more than 30 years of marriage. Lorraine sold her retail business to care for Brian full time.
Lorraine didn’t think of Brian as a cancer patient. She also didn’t think of herself as a caregiver. She simply looked after the person she loved the best way she could.
Her book, “Lean on Me: Cancer Through a Carer’s Eyes,” tackles the physical and emotional impact of caring for a loved one with mesothelioma. The book addresses pain management and control of symptoms related to chemotherapy and strong medications.
Her account is filled with deeply moving excerpts and poems from Lorraine’s personal diary, which offers a rare insight into anticipatory grief, or the roller coaster of emotions one experiences upon a terminal diagnosis.
The success of “Lean on Me” led Lorraine to a career as a motivational speaker. She has toured the world speaking about the techniques and hardships of being a mesothelioma caregiver.
Lorraine also has published two other books: “Tear Drops,” which features a collection of inspirational poems, and “Looking Forward, Looking Back: The Grieving Journey.” The latter is a sequel to “Lean on Me” that explores her battles with grief and healing following the death of her husband.