When a loved one is diagnosed with mesothelioma, family members jump into action. They provide for the patient’s physical and emotional needs while handling their own needs simultaneously. Helping someone diagnosed with an asbestos disease can be overwhelming.
Most people who provide at-home care for loved ones are not licensed medical professionals, but they become responsible for managing critical daily tasks, like making appointments, administering medications and handling financial affairs. Studies show family carers have unmet emotional, physical and social needs, including the need for one-on-one support from healthcare providers and access to care-related information.
Caregivers must find support as they help their loved ones or they risk burnout, also called caregiver fatigue. Feeling physically and emotionally exhausted can create sadness and resentment that ultimately impacts the quality of care. Caregivers need to have places to turn for help.
Support For Mesothelioma Patients
A caregiver’s primary goal is to support the patient but determining the type of care needed and how it is delivered is challenging. Most caregivers should start by having a frank conversation with the patient to determine the goals for the care. Some considerations include:
- Treatment Goals – Determine if the patient wants to participate in ongoing aggressive treatment, clinical research trials, palliative care and hospice care.
- Financial Decisions – Decide how medical expenses, ongoing household bills and other financial responsibilities will be handled.
- Legal Decisions – Discuss the need for a power of attorney so the caregiver can continue making decisions throughout the patient’s illness.
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Challenges Caregivers May Face
Mesothelioma caregivers should keep in mind some of the common challenges they will face when providing support, including:
- Less Personal Time – Caregivers will find they have less time to handle their personal affairs.
- Increased Stress – Caregiving takes an emotional and physical toll on the carer.
- Financial Strain – Since most family caregivers are not paid, they face a financial pinch, particularly if they must take time from their paying job.
- Excessive Fatigue – The lack of sleep can cause a cascade of physical and emotional problems.
- Isolation and Depression – Caregivers have less time for social connections, increasing the chance for feelings of isolation and depression.
Helpful Tips For Caregivers
Some ways caregivers manage their challenges include:
- Getting Outside Help – Create a care team of trusted family and friends who can step in when needed. If someone says they want to help, take them up on the offer.
- Reduce Stress – Do relaxing and fulfilling activities, like exercising, reading a book or chatting with friends, to reduce stress.
- Manage Your Emotions – Keep a journal, see a counselor or join an online or in-person support group. Don’t keep emotions bottled up.
- Create A Routine – A daily routine is helpful because it limits unexpected events that can cause stress.
Mesothelioma Caregiver Roles
Providing care and support to a family member or friend with mesothelioma is a big task. On average, caregivers provide up to 20 hours a week of assistance, impacting their personal lives and work productivity. Carers manage the patient’s physical, emotional, social and financial needs, including:
- Helping with self-care such as showers, shaving and dressing
- Completing household chores like laundry, cleaning and cooking
- Managing the patient’s finances and paying bills
- Planning for care, including scheduling doctor’s appointments
- Providing social support by visiting frequently
How Do Caregivers Help Families?
Even if they live out-of-town, caregivers can help sick family or friends in various ways, including:
- Helping with bills and finances
- Arranging for in-home care, including nursing services, house cleaning and meal preparation
- Locating a nursing home or assisted-living facility for long-term care
- Providing emotional support for the patient or respite care for the full-time caregiver
- Acting as a liaison between the patient and the rest of the family
Am I Ready To Become A Caregiver
Overall, the decision to become a caregiver requires reflection because of the high level of responsibility. Before deciding to be a caregiver, consider the following questions:
- Can I meet the physical and emotional demands of caregiving?
- Do I have the skills and support I need to provide care?
- Do I have the time and money to make the commitment?
- Can I ask for help and accept help when it’s offered?
- Do I have job flexibility so I can meet caregiving demands?
- Am I aware of the community resources available that support my role as a caregiver?
- Do I know how to navigate the healthcare system?
When family and friends feel like they are not suited to be caregivers, they often turn to paid caregivers. Finding the right person will help the patient and their family. The most common ways to find a paid carer are through a home care agency or recommendations from friends.
Caregivers as Medical Care Providers
Mesothelioma patients need attentive care, particularly in the later disease stages. Family members and friends can provide the best support when they understand what’s involved.
One part of the responsibility includes providing medical care, which includes helping with self-care. Some of those responsibilities include:
- Performing nursing tasks such as administering injections, managing medications, cleaning feeding tubes and helping with incontinence issues.
- Watching the patient for any changes in eating or toileting habits.
- Providing a continuum of care after hospitalizations, including coordinating with discharge planners, social workers, care managers and clinicians.
- Assisting with basic needs such as personal hygiene.
Caregivers As Decision Makers
In addition to assisting with the patient’s medical needs, carers often take on the role of decision maker. Some ways carers help include:
The very last thing a cancer patient should be worried about is managing finances. Caregivers can help in several ways:
- Overseeing daily expenses, including keeping track of due dates.
- Managing bills such as medical expenses.
- Finding ways to get financial assistance, including through asbestos trust funds and lawsuits.
Sometimes primary caregivers must make medical decisions for the patient. The patient must draw up documents that allow the carer to help, including:
- HIPAA authorization forms, which designate who can receive information about the patient’s care.
- Medical power of attorney forms, which select a healthcare representative to speak on the patient’s behalf when the patient is unable. The medical power of attorney can also make treatment decisions.
- Advanced directive (also called a living will) documents that specify a patient’s wishes for end-of-life care.
Caregivers may need to help the patient make important legal decisions, including when to hire an attorney to seek trust fund settlements. Carers need the following documents to help:
- Financial power of attorney (also called durable power of attorney), which gives an individual the authority to manage the patient’s financial affairs.
- Conservatorship (or adult guardianship), which grants caregivers the authority to make medical, financial and legal decisions on the patient’s behalf. Conservatorship is granted by a court and only necessary if other documents (like power of attorney) have not been preauthorized.
Caregivers have the difficult task of making end-of-life decisions if the patient has not specified what they want. With preplanning, patients can save carers the stress of the decisions. Some necessary documentation can make the process easier:
- Do-not-resuscitate orders (also called DNRs), which detail the life-saving methods to be used if the patient cannot speak.
- Wills, which describe how the patient’s property should be distributed after death.
- Funeral planning forms, which outline the patient’s final arrangements, such as funeral or cremation plans and details for an obituary.
Understanding Patient Insurance
On average, mesothelioma patients with insurance pay between $6,000 to $10,000 out-of-pocket costs annually for care. Insurance options include:
- Employee-sponsored plans, which are typically reserved for patients who work for larger companies that provide group health insurance.
- Private individual insurance, which is available through the federal marketplace or private plans sold directly by health insurance companies.
- Medicare, Medicaid and VA plans, which are government-sponsored and have specific requirements for eligibility.
Some patients may have long-term care insurance that pays for services not covered by regular health insurance, like nursing home stays and in-home caregiving.
Caring For Yourself
Some people may consider self-care to be selfish, but, in truth, it’s the most loving thing a carer can do for a patient. Studies show carers run the risk of depression, poor health and excessive alcohol use if they don’t care for themselves. Some symptoms of caregiver burnout include:
- Mental fatigue
- Withdrawal from family and friends
- Loss of interest in activities once enjoyed
- Changes in weight, appetite and sleep patterns
- Getting sick more often
Caregivers also experience feelings of loss and grief. For carers, anticipatory grief begins before a patient dies and includes feelings of dread, anxiety, sadness and anger.
Using grief and stress management tools like counseling, journaling and support groups can help. National and local organizations like the American Cancer Society and hospice centers offer support for caregivers.
Financial Support for Caregivers
A study by AARP found family caregivers spend an average of $7,242 per year on costs related to caregiving. The financial strain is exacerbated when the caregiver must reduce work hours or quit a job altogether to care for a sick family member. There are some resources that provide financial support for caregivers:
- Medicaid Cash and Counseling Program – Some states pay family members to care for medically needy, low-income Medicaid recipients.
- Veteran’s Benefits – The VA’s Program of Comprehensive Assistance for Family Caregivers (PCAFC) pays family members to care for veterans with a disability rating of 70% or higher.
- Long-term care insurance – Some long-term care insurance plans cover in-home nursing care, including care from a family member or close friend.
In addition, caregivers for mesothelioma patients also have options:
- Asbestos trust fund payments – More than 50 companies have opened asbestos trust funds to compensate mesothelioma patients and their family members.
- Lawsuits – Asbestos victims and family members can file lawsuits (either personal injury or wrongful death) for compensation from at-fault companies.
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- Harrison, Madeleine, et al. (2021). Palliative Medicine. Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review. Retrieved from https://journals.sagepub.com/doi/pdf/10.1177/02692163211007379
- Bonafede, Michela, et al. (2021). Psycho-Oncology. Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool—Caregivers. Retrieved from https://onlinelibrary.wiley.com/doi/epdf/10.1002/pon.5789
- Hersher, Rebecca. NPR. “Asbestos Deaths Remain A Public Health Concern, CDC Finds.” Retrieved from https://www.npr.org/sections/health-shots/2017/04/11/523277735/asbestos-deaths-remain-a-public-health-concern-cdc-finds
- Lerner, Debra (2022). Invisible Overtime: What employers need to know about caregivers. Retrieved from https://www.rosalynncarter.org/wp-content/uploads/2022/03/Invisible-Overtime-White-Paper.pdf
- Kerr, Nancy (2021). AARP. Family Caregivers Spend More Than $7,200 a Year on Out-of-Pocket Costs. Retrieved from https://www.aarp.org/caregiving/financial-legal/info-2021/high-out-of-pocket-costs.html