Written by: Devin Golden
A mesothelioma diagnosis is hard on everyone involved, and caregivers must deal with personal difficulties that are uniquely their own.
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Caring for Someone With Mesothelioma
Mesothelioma is a rare disease with an unfortunately short prognosis for most patients, making the role of the caregiver priceless. Caring for someone with cancer can take its toll on the caregiver. However, caregivers can prepare themselves for what’s ahead.
The caregiver perspective can be useful in determining whether certain treatments should be continued or not. Caregivers are expected to help manage medications for their loved one and report any new or changed health issues to their doctor.
One of the caregiver's most important roles is to comfort and listen to their loved one through any rough patches. Mesothelioma develops seemingly out of nowhere and patients can expect to face a series of new challenges. Having the companionship of the caregiver makes getting through this difficult time easier.
Caregivers play a big part in the decision-making process, which can often be the hardest role. These decisions may regard treatment, financial and legal issues, insurance and end-of-life care.
What Caregivers Can Expect
There are many facets to being a caregiver for someone with mesothelioma. The most basic of these is taking over the duties and responsibilities that the patient can no longer attend to without help. The most common responsibilities of the caregiver include:
- Feeding, dressing and bathing
- Scheduling doctor appointments
- Monitoring changes in health
- Managing medication
- Providing transportation
- Managing insurance
- Liaison for financial and legal issues
The roles of the caregiver change with development of the patient's mesothelioma. As the cancer becomes more advanced, caregivers have to address more of the day-to-day needs that the patient. Conversely, patients may also have improvements in health, reducing the need for this kind of support.
Family and Medical Leave Act
Some people may be concerned about taking time off from work, which is often required of caregivers. When their disease advances, patients may require more care. Caregivers may have to travel with the patient for medical procedures that can take up to a week, including recovery and travel time. The Family and Medical Leave Act of 1993 provides certain caregivers with up to 12 weeks of unpaid time off to protect them from losing their jobs when caregiving starts taking more time.
Talking About Mesothelioma
Talking about cancer with a patient can be difficult as everyone reacts differently to this emotional topic. However, opening the lines of communication is one of the best ways to support your loved one. You may even find that talking is exactly what the patient is looking for as a means of relief. Talking about the patient's diagnosis can also be a tremendous emotional relief to you, as the caregiver, as well.
Expressing your fears in a genuine way can get the conversation started. Some people also employ the help of a counselor or spiritual leader. If you are unsure how to begin the conversation, support groups can open the door by allowing you to share your feelings with them first. They may also have ideas for how you can get started on this important discussion with your loved one.
Anticipatory grief is something that affects virtually all mesothelioma caregivers. Because of the short survival time associated with mesothelioma, this is a particularly hard disease to cope with when it involves a family member. There are several support groups and organizations specifically for mesothelioma caregivers that can help.
Support groups can offer peace of mind by sharing personal experiences relating to caring for someone with mesothelioma. Support groups can also offer advice that can take some of the stress off of caring for the patient. These support groups take place online, over the phone and face-to-face.
Caring for Yourself
One of the biggest, and most common, mistakes caregivers make is not giving themselves the time they need to care for themselves. As a caregiver you may think it’s selfish or feel guilty about making time to live your life and get the rest you need while a loved one is sick. However, the care you’re able to provide your loved one is directly proportional to how well you care for yourself. Some tips to help you keep your wits about you and be the best caregiver you can be are:
Get Plenty of Sleep
Sleep is one of the most essential functions of staying healthy and productive. Getting rest is essential to staying on your toes and in control.
The reasons for eating well fall under the same philosophy as for getting enough rest: maintaining your health helps you stay more productive and stress-free.
By planning ahead, caregivers can avoid some of the overwhelming feelings associated with caregiving and curtail some of the stress.
Learn About Mesothelioma
Educating yourself about mesothelioma can make you a better caregiver by knowing what to expect and understanding what your loved one is going through.
Talk it Out
Whether it's with a family member, support group or the patient, talking about your concerns and fears is healthy. It also helps relieve stress.
Don't Be Afraid to Ask for Help
We can't do everything on our own. Being a caregiver is no easy task and asking for help to lighten the load can benefit both you and the patient.
Get Help Today
Whether it’s finding a doctor, legal help or a support group, we can help. The team at Mesothelioma Guide has been helping patients and families for over ten years. There are patient advocates available to answer any questions you may have or just get our our free Mesothelioma Guide.
Frequently Asked Questions About Mesothelioma Treatment
Who can be a caregiver for a mesothelioma patient?
Any family member or friend can serve as a caregiver for someone with mesothelioma. The American Cancer Society defines a caregiver as anyone not paid to provide help to someone with cancer or another debilitating disease. Being a caregiver is different from professional medical services that provide hospice care.
What are some of the responsibilities for caregivers?
The most pronounced caregiver responsibilities are cleaning the house, cooking, running the household, managing the patient’s medication schedule and communicating with friends and relatives. Other key tasks include:
- Providing transportation
- Bathing and dressing the patient
- Giving emotional support
Can mesothelioma caregivers take time away from work?
The Family and Medical Leave Act of 1993 protects caregivers from losing their employment. This law provides up to 12 weeks of unpaid time off before a company can terminate the caregiver’s employment. This time covers traveling for medical treatment, recovery following medical care and caring for patients who are housebound.
What are a few important tips for mesothelioma caregivers?
Caregivers often prioritize their loved one’s well-being over their own. They spend most of their time performing caregiving duties while neglecting their own mental and physical health. If you’re a mesothelioma caregiver, make sure to:
- Get plenty of sleep
- Eat well
- Find a support group or counselor
- Have time to yourself
Last Edited: April 10, 2023.