Caregiver Support

Caring for someone with a terminal cancer such as mesothelioma can be difficult. However, there are many resources available for mesothelioma caregivers.

Key Points

  • 1

    One of the most important steps is taking care of your own health, too.

  • 2

    Finding support, whether friends or a support group, can make a huge difference.

  • 3

    Developing a strong relationship with the medical team can make advocating easier.

  • 4

    Avoiding all the "what if" questions can improve stressful, challenging days.

Reports have indicated that millions of Americans act as caregivers for others with cancer, majority of which are family members. Caregiving is difficult for anyone, but even more so when it involves an aggressive, hard-to-treat cancer such as malignant mesothelioma. It’s important for caregivers to recognize and address challenges that they are facing to seek out help and support that will benefit them and the mesothelioma patients that they are caring for.

Challenges of Caregiving
  • Fatigue
  • Sleep disruption
  • Ignoring own health needs like exercise
  • Physical care of the patient
  • Strained relationships
  • Feeling isolated
  • Burnout
  • Time commitment
  • Financial burdens
  • High levels of stress

Though there are many challenges associated with assuming with the role of a caregiver, there are also many rewards as you offer your time, effort and support to someone going through treatment or facing an end-of-life diagnosis. By seeking out caregiver support, you can find resources that will ease your role and allow you to provide for your loved one in the best way possible.

Help for Caregivers

As a mesothelioma caregiver, it is very easy to become overwhelmed with the situation. Caring for someone facing such a poor prognosis, especially when it’s a loved one, can be emotionally and phsycially draining, leading to burnout. While it’s hard to ask for help, burnout isn’t going to be helpful for you as a caregiver or for your loved one. However, there are some tips and resources that may help prevent this.

Establish a Caregiver Contract

The idea of a contract may seem to formal when it comes to caring for a family member, though it can save stress and ensure that everyone is one the same page. A caregiver contract or personal care agreement is an agreement between the patient and caregiver that lays out expectations of the relationship. The contract can include information like:

  • A detailed description of services provided, such as transportation and errands
  • Flexible arrangement of how often services are needed
  • Compensation, if any
  • Location of services

Contracts can take many different forms, and should cover any concerns or details that you and/or your loved one feel should be addressed. These agreements can relieve a lot of stress and help avoid potential problems. Even when compensation isn’t involved, providing care is, in essence, a job, and involves duties and expectations that need to be discussed.

Find a Support System

When acting as the primary caregiver for a loved one dealing with cancer, it can become time-consuming and limit your interaction and involvement with others. One way to combat this is by finding a support system. A support system can not only help limit emotional and mental exhaustion, but it can connect you with others that may have similar experiences, can offer their help as well or can just be a point of comfort during a time that’s difficult for not just the patient, but for you as a caregiver, as well.

Acting as a cancer caregiver in particular may be an opportunity to join a support group. Many hospitals, clinics and communities offer local support groups that will connect caregivers with one another to discuss their experiences and share resources with one another, also helping everyone recognize that they are not alone.

Take Care of Yourself

Putting the patient first is a huge aspect of caregiving. It can be easy to become consumed by your caregiving duties. After spending so much energy making appointments, running errands or facing other tasks needed, it can be difficult to step out of that role and want to plan for your own needs. But planning time for yourself and making sure you stay healthy is just as important as caring for the patient.

By making the choice to set some time aside for yourself, whether it’s to take care of your own errands or just relax watching a movie, you’ll be in a better mindset to take on the challenging tasks of your job. Even some mental breaks during the day can make a huge difference in your overall well-being.

Work with the Health Experts

As a family member taking on a caregiving role, it can be overwhelming to understand all the medical circumstances around a mesothelioma diagnosis and the treatment options available. Many caregivers become an advocate for the patient and have to interact with the medical team to discuss a patient’s treatment, any side effects they’re experiencing, and better understanding how to manage their care.

Developing a strong working relationship with the medical team can not only put your mind at ease that your loved one is receiving the best care, but can also make you feel more comfortable reaching out with questions or for help. Being organized for doctors’ visits with scans and medication schedules can also help put you at ease and feel more prepared for what can be stressful appointments.

Be Mindful of What You Can and Can’t Control

Everyone faces moments in life where they’re inundated with all the “what if” questions. As a caregiver, it can be even easier to question the care you’re providing or wondering if you could have handled a certain situation better – especially as someone stepping into the role for the first time after a loved one’s been diagnosed. These questions only add to an already high-stress situation.

Remind yourself that no matter how hard a day may be, you’re doing the best you can. You can’t control every situation and you certainly can’t control your loved one’s cancer journey. You can only control your mindset and how you take on these challenges. Take a few deep breaths, clear your thoughts, and re-energize for the next task at hand.

Resources

For more information on caregiving and additional support, here are some other resources to help get you started.

Caregiving Tips from MAA

Discover tips for caregiving, from caregivers themselves.

Read More
National Alliance for Caregiving

Aims to improve the quality of life for families and caregivers.

Learn More
Care Advantage Inc.

Focus on helping give patients the care they need, in their homes.

Learn More
Family Caregiver Alliance

Offers support to friends and family that offer care to family members.

Learn More
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Written By Tonya Nelson Tonya Nelson

Tonya Nelson is an experienced writer and editor, who has published on a wide variety of topics, particularly in the health field. Her bachelor’s degree in magazine journalism from the S.I. Newhouse School of Public Communications at Syracuse University sparked her curiosity for writing stories about environmental and medical issues. As the Managing Editor, Tonya oversees the content development process, ensuring every article and informational page published adheres to MAA Center’s editorial guidelines.