Caregiver Support

Mesothelioma can wreak havoc on the well being of not only the patient, but his or her family caregivers, as well. According to the National Alliance of Caregiving, a “family caregiver” is a family member, friend, neighbor, or other loved one who provides unpaid care for others in the home. If you are caring for a loved one with mesothelioma, you may be feeling overwhelmed, isolated and on your own. But it is important to know that you are not alone; in fact, an estimated 44.4 million people in the U.S. serve as family caregivers each year. Even more importantly, help is available to you.

As a caregiver, you may find yourself responsible for the physical, emotional, and possibly even the financial needs of the mesothelioma patient. You are a caregiver whether you live with and care for your loved one around the clock or live in another state and travel back and forth to attend to your loved one’s needs and/or help them long-distance.

Being the caregiver to a seriously ill patient is a difficult job and one most of us hope we’ll never have to do. When you’re involved in caring for a person with malignant mesothelioma, the tasks you face may at times seem daunting and sometimes even impossible. You may be relied upon for all sorts of responsibilities, from everyday tasks like cooking, cleaning, and shopping, to bathing and feeding your loved one, to managing his/her financial affairs, to being his/her healthcare advocate. It will no doubt sometimes feel like more than one person can handle.

While the person with mesothelioma’s health care and emotional needs are understandably the primary focus, caregivers can sometimes feel even more overwhelmed than the patient. As you struggle to support your loved one, you must learn when to talk and when to listen. And you must also take care of yourself, lest you lose your own health or mental well being. Just remember: if you do not take care of yourself, you will be in no condition to take care of the mesothelioma patient. Considered in this context, taking care of yourself and seeking help is not a selfish act, but a necessity for both you and the patient.

Fortunately, much support is available for family caregivers. Like mesothelioma patients, you must simply learn to seek it out. Government programs, non-profit agencies, hospitals, churches, and advocacy groups can help provide you with the support you need. The information in these pages will help get you started.

Coping with your Caregiving Responsibilities

Do you suddenly find yourself in a caregiving role? Are you feeling overwhelmed and uncertain about your new responsibilities? Are you worried you might not be doing a good enough job caring for your loved one’s needs?

Fortunately, many good resources exist to help you in your caretaking role. For example, The National Alliance of Caregiving www.caregiving.org offers a wealth of helpful publications on topics such as general caregiving skills, home safety, legal and financial issues, understanding the health care system, hospital discharge planning, and maintaining medical records. Local organizations may also exist to provide you with counsel and support. Check with the hospital social worker or your local United Way for information about resources in your community. You can also look at the online resources listed in this web site.

Understanding your loved one’s health care needs

On top of the stress of caring for an ailing loved one with mesothelioma, you might also find yourself suddenly thrust into the role of health care advocate. This can be a daunting experience, especially if you are unfamiliar with the health care system and the patient’s insurance plan.

Fortunately, help is available for you to navigate this new role. For example, The Family Caregiver 101 website www.thefamilycaregiver.org provides tips on understanding insurance coverage, communicating with health care professionals and insurance providers, and advocating effectively for the patient’s health care needs.

One of the first things you can do is to educate yourself about mesothelioma, its diagnosis and symptoms, and the treatment options available. Once armed with this information, you are better equipped to discuss the patient’s health care needs with his/her doctors and other health care providers and advocate for optimal care.

Finding Support Groups

Caregivers have their own emotional needs, yet all too often their feelings take a back seat to the immediate needs of the patient. Fortunately, support groups exist to provide caregivers and patients alike with an outlet for sharing their feelings, connecting with other people, learning coping skills, getting valuable information about helpful services, and seeking advice. A good support group can provide these services and more in a caring, supportive, nonjudgmental way, while also protecting your confidentiality.

A traditional support group is typically led by a group facilitator who may be trained in counseling or social work. The group should have a clear structure and purpose as well as operate with a set of rules that all participants agree to and abide by. A support group may focus on a particular condition, such as mesothelioma, or may be geared more generally for cancer patients, caregivers, or family members. Traditional support groups typically meet periodically at a hospital, church, or community center.

Thanks to today’s technology, you can also find online support groups run by individuals who know the ins and outs of dealing with cancer patients. These groups are available on the web if a group is not available near your home. Online support groups are particularly valuable for the housebound or those who seek to connect with a broader, even worldwide, community.

Whether in person or online, support groups can offer:

A forum where you can vent your frustration, anger, or other emotions what are welling up inside of you, in a safe and supportive environment. Others there are in the same position – or have been in the past – and they can help you work through these difficult feelings.

A source of information sharing on mesothelioma, including current advances in mesothelioma treatment and other pertinent information that may help you or the patient.

A place where you can enjoy social interaction with others. Because many caregivers tend to be house-bound, the opportunity to get out and be with others who have like concerns can be a relief and a welcome respite from your burdens. (If you’re using an online group, try to use a computer that’s not in the home of the patient, so you can “get away” for awhile.)

Reassurance that others are facing the same challenges as you. Such groups allow you to spend time with someone who understands what you’re dealing with, especially when friends and family members just don’t seem to get it.

To find a support group in your area, contact your hospital social worker, local United Way agency, church, or health department for resources in your area. To find online caregiver support groups, or to seek additional resources, contact the following organizations:

Children of Aging Parents
800-227-7294
www.caps4caregivers.org

Family Caregiver Alliance
800-445-8106
www.caregiver.org

Family Voices, Inc.
888-835-5669
www.familyvoices.org

Friends’ Health Connection
800-483-7436
www.48friend.org

Well Spouse Foundation
800-838-0879
www.wellspouse.org

American Cancer Society
800-227-2345
www.cancer.org

Cancer Support Community
(formerly Gilda’s Club and The Wellness Community)
www.thewellnesscommunity.org

OncoChat
www.oncochat.org

Please keep in mind that we are lawyers, not social services experts. By listing these site, we do not intend to provide medical or psychological advice or to recommend any of the organizations named here. We just want to offer you additional resources for coping with your caretaking role.

Asking Others for Help

Sometimes, caretakers don’t ask for help of family and friends when they should. It is important to realize that you do not have to shoulder all of the caretaking responsibilities by yourself. For example, other family members—even those who live outside of the patient’s community—can help in a number of ways, including managing financial and healthcare issues. If you are the primary caretaker, consider calling a family meeting to discuss what needs to be done and to delegate some of the responsibilities.

Unfortunately, not all caregivers have other family members and friends who are willing or able to help. That is when it’s necessary to look outside your circle of family or friends for support. So-called “support groups” have been around for a long time and you can probably find one for caregivers of cancer patients at a hospital or other medical facility near you. You can learn more about finding support groups in these pages.

Respite for the Caregiver

If you are your loved one’s primary caretaker, you need and deserve a break, or respite, from your responsibilities. Respite care provides you with a few hours, a day, or even several days away from your caregiving duties, affording you the chance to rest and relax, clear your mind, even have some fun. Studies show that people who use regular respite care reduce their stress levels and improve their personal health and sense of well-being. And when you are rested and healthy, you are in turn that much better able to care for your loved one. In this sense, taking a break is not a selfish act—it’s healthy for you and good for your loved one, too.

It is of the utmost importance for you to maintain your health – both mental and physical – while caring for a person with mesothelioma. If you’re sick or burned out, you can’t care for the patient properly. Above all, you need to realize that it’s okay to ask for help or to take some time off when needed, even if it’s just a few hours spent with a few friends or even by yourself, doing the things you enjoy doing. When you’re feeling poorly, the quality of care you can provide will diminish as well, so it’s best to take time to refresh when necessary.

Don’t be afraid to rely on family and friends to provide you with a break from your care-giving duties. Additionally, you can seek respite care resources in your community by checking with your local United Way, health department, or hospital social worker. You can also check our resource listing of national organizations that provide support for caregivers. Many nonprofit groups help to coordinate respite care by healthcare providers at a low cost.

Resources

There are many resources available for caregivers. Here are some national organizations and agencies that provide assistance to caregivers. For resources in your local community, talk to the hospital social worker, local United Way agency, or health department for more information.

National Alliance of Caregiving
www.caregiving.org

Family Caregiver Alliance
800-445-8106
www.caregiver.org

National Family Caregivers Association
800-896-3650
www.thefamilycaregiver.org

Children of Aging Parents
800-227-7294
www.caps4caregivers.org

Well Spouse Association
800-838-0879
www.wellspouse.org

AARP
888-OUR-AARP
www.aarp.org

The National Coalition on Aging
www.ncoa.org

United States Administration on Aging
www.aoa.gov

Eldercare Locator
800-677-1116
www.eldercare.gov

National Respite Locator Service
www.respitelocator.org

Hospice Foundation of America
800-854-3402
www.hospicefoundation.org

Family Caregiver 101
www.familycaregiving101.org

Please keep in mind that we are lawyers, not social services experts. By listing these sites, we do not intend to provide medical or psychological advice or to recommend any of the organizations named here. We just want to offer you additional resources for coping with your caretaking role.