Resources for Mesothelioma Caregivers
Life as a Caregiver
Becoming a caregiver can be stressful. Even when you are prepared to do all you can to help your loved one, you will have a lot to learn. Additionally, sometimes things do not go as you imagine they will; the stress of handling unexpected situations can be even more difficult when you’re already dealing with a heavy emotional burden.
If you have been put in the position of caretaker, whether by choice or by necessity, here are some basic resources to help you navigate the role:
- The American Cancer Society explains what to expect when caring for a patient at home and provides how-to resources as well as information on coping skills for the caregiver.
- Caregiving Basics from Cancer.net provides information about various issues associated with long-term caregiving both at home and in the hospital. This site is provided by the American Society of Clinical Oncology.
- The National Cancer Institute site explores the emotions caregivers experience and the ways to prevent these feelings from interfering with daily life with a free, downloadable e-book.
- CancerCare provides a variety of free services including online support groups available 24/7, weekly telephone consults with oncology social workers, and educational workshops that can be accessed via dial-in or livestream.
- The National Cancer Information Center (NCIC), funded by the American Cancer Society, has a 24/7 hotline for cancer patients and caregivers alike. They also offer chat and video call services.
- VeryWell Health discusses how respite care can give caregivers a much-needed break so they can tend to their own needs.
Long-Term Care Planning
As a caregiver, you may find yourself facing big questions regarding what the future will look like. Here are some tools that will help you explore available options so you can decide which is best for you and your loved one.
- The National Institute on Aging offers various resources on its Long-Term Care page (and links to other caregiver tools as well).
- New LifeStyles was created by Les Blaser because of his inability to find adequate information about long-term care options when he was looking for care for his mother. All information on this site is provided free-of-charge, including the Care Guides for 39 metropolitan areas in the U.S. and Canada.
- AARP’s Long-Term Care Insurance Guide can help you compare different providers and learn more about what you may need in a policy.
- You can also visit AARP’s Family Caregiving page to find links to tools including a long-term care calculator.
Mesothelioma Cancer Patient Transport
Because cancer treatments often require multiple clinic visits per week, patients may have trouble finding transportation. Especially if they and/or their caretaker cannot make the trip by car, figuring out clinic access can be a large part of care planning.
There are three categories of patient transport:
- Door-to-Door (Dial-a-Ride, Demand-Response) services are the most convenient for patients but usually require advance reservations.
- Fixed-Route services have set schedules and stops. Passengers can board or get off at their will. Reservations are typically not required.
- Ridesharing (carpooling) programs usually match volunteer drivers with patients who need rides. These services are typically for specific needs like medical appointments.
Depending on your location, the resources available may be limited. Some may cost or have other limitations. To find the best options in your area, try these listings:
- The Eldercare Locator allows you to search for transportation either by zip code or by city and state.
- Your local State Plan for Independent Living (SPIL) or Center for Independent Living (CIL) may be able to connect you with a ride provider.
- The National Transit Hotline (1-800-527-8279) maintains a database of local transit providers who receive federal money to provide medical transportation.
- The American Cancer Society Road to Recovery Program (1-800-227-2345) makes transportation available to and from treatment for cancer patients who need rides. Chat with a representative on the ACS site or call to see if the program is available in your community.
Caregiver Support Systems
Caregiving is an emotionally exhausting job, even when you want to do everything you can to make your loved one comfortable and happy. Caregivers often experience mental health issues like depression and burnout and may have trouble balancing their role as a caregiver with obligations to others, including themselves.
Even if you’re not struggling at this time, it can be good to make a plan and/or set up a support system now so you have help when you need it. Here are some places to turn if you are a caregiver.
Support Groups and Counseling Services
- The Mesothelioma Applied Research Foundation provides free telephone counseling sessions and links to Facebook and telephone support groups.
- The Cancer Support Helpline, run by the Cancer Support Community, offers phone and live chat services with trained social workers.
- Find local counselors who can support you with the help of these resources from Cancer.net.
- The American Cancer Society's discussion boards provide a place for caregivers to connect and share experiences and advice.
- The American Cancer Society also provides a free video series about Caregiver Self-Care that is free and can be accessed via computer or phone. The videos cover a variety of physical and emotional issues associated with having a cancer diagnosis.
Spiritual Guidance for Mesothelioma Caregivers
In a study titled “A Case for Including Spirituality in Quality of Life Measurement in Oncology”, published in the September/October 1999 edition of Psycho-Oncology, researchers administered a questionnaire called the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being to 1,610 ethnically diverse cancer patients to determine what role spirituality played in their quality-of-life.
After evaluating the results and factoring in any variables that might affect them, the researchers found these patients believed spirituality was as important to quality-of-life as physical well-being, and that spirituality helped these patients enjoy life in spite of symptoms.
If you have a spiritual advisor, talking with them can help you manage the emotions and challenges associated with a loved one’s mesothelioma diagnosis. If you are not part of a religious or spiritual community, many cancer treatment centers retain chaplains on staff to provide guidance to patients and their families.
In addition, these resources may be a source of strength and comfort:
- The Stronghold Ministry is a non-profit founded by Joe Fornear, who is a Stage IV metastatic cancer survivor with a Masters in Theology from Dallas Theological Seminary. On his site, you will find an active blog and links to other resources.
- The Cancer Treatment Centers of America offer individual and group prayer, consultations with spiritual leaders from various faiths, and other support to help you and your loved one practice your faith on their Spiritual Support page.
- The Cancer Supportive Survivorship Group offers four non-denominational prayers for healing as well as other written guidance for those who may be struggling after a loved one’s diagnosis.
- CancerCare offers a podcast episode on “Finding Hope and Meaning After Treatment” and tips for Strengthening the Spirit when cancer is threatening a loved one.
Many caregivers think spiritual support is not for them because they do not have strong ties to any faith. However, spirituality does not always refer to religion. It simply refers to finding a connection to a larger community and sense of purpose. Whether you want to explore a religion and deepen your ties or prefer to focus on finding a community of like-minded people who can support you during this time, taking care of your spiritual needs can be essential to resilience.
We Can Help You Find Help
After assisting numerous mesothelioma patients across the U.S., our team has built connections with many professionals and resources who can help you navigate your life after a mesothelioma diagnosis. No one should have to go through this time alone. Regardless of what type of support your need, we invite you to reach out to our team. We are happy to connect you with resources and advice that may help you during this time.
Shrader & Associates, L.L.P. is available at (877) 958-7920. Ask our lawyers how we can help you after a mesothelioma diagnosis—no matter where you are in the U.S.
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