The Role of Being a Cancer Caregiver – the patient’s trusted companion.

There’s no better person who understands the quality of life challenges and needs of a cancer patient than their personal caregiver.  Caregivers are often the patient’s beacon of hope and critical support network in their struggle against cancer. In this post, we will highlight some of the key responsibilities that come with being a new caregiver for a cancer patient.

Open Communication

In the beginning and throughout the duration of the patient’s recovery against cancer, it’s extremely important that both the patient and caregiver are open and honest about their needs, schedules, and responsibilities.  Open communication is essential in laying the foundation of trust in this new relationship.

In addition to being open, it’s also important for the caregiver to maintain a level of composure around the patient.  Normally, the cancer patient is already in an emotionally fragile state from the condition – experiencing feelings of frustration, depression, loneliness, anger, and resentment.  Therefore, as a caregiver, careful communication is important not only to accurately understand the patient’s needs but also to be sensitive to his or her feelings.

Treatment Planning and Decision-Making

Perhaps, one of the most challenging initial tasks as a new caregiver is learning the complex oncology healthcare system.  New caregivers should engage oncologists, nurses and other healthcare professionals with questions so that they can help patients make the right decisions resulting in the best possible care for the patient.  Common newly diagnosed cancer patient questions include treatment effectiveness and side effects, medication reimbursement, availability of clinical trials and alternative therapy options, supplemental treatment options to manage pain, and much more.  Some recommended tips from the American Cancer Society and other leading cancer advocacy groups include the following:

• Stay organized with all medical tests, notes and clinical treatment
• Constantly keeping a list of questions
• Actively seeking out second-opinions from various doctors
• Seeking help from nurses, cancer advocacy organizations
• Joining and participating in support groups
• Actively engaging your HMO on reimbursement options

Financial Concerns

The clinical tests, several rounds of treatment, and other patient care services will quickly run up the patient’s healthcare bill and insurance may only cover a fraction of these expenses.  Therefore, it’s important to make sure that the finances are managed closely.  Experts have suggested employee assistance healthcare programs and applications to foundations for financial support.  Some nurses have cited that though there are a good handful of financial resources available for patients, the challenge is that funding is always limited.  Patients and caregivers need to submit their applications for financial support as soon as possible to maximize the opportunities for aid.  Patients and nurses have cited that The Patient Advocate Foundation has been one of the most helpful and caring foundations in helping patients with insurance access issues, assisting with managing medical debt and providing aid where possible via the PAF Co-Pay Relief (CPR) program.  Other co-pay / out of pocket relief and prescription assistance programs include: Chronic Disease Fund, Healthwell Foundation, Patient Access Network Foundation, Leukemia & Lymphoma Society, CancerCare, and Sarcoma Alliance.

Emotional Support

Though local support groups are available to cancer patients, as a caregiver, you are the patient’s primary support network whom they rely on for hope, strength and inspiration as they battle this condition.  Therefore, as a caregiver, it’s important to take care of yourself first, so that you can take care of the patient.  If you are feeling depressed or overwhelmed, take a break.  Reach out to other family members to help out with the providing care so that you can reset and recharge.  The primary caregiver’s role is an extremely demanding one and can place a heavy burden on anyone.  However, the patient needs you to take care of yourself so that you can provide the energy, focus and strength necessary for their cancer care.

Home Care Services

Home care services are a common responsibility for caregivers of patients struggling with severe chronic conditions.  “Home care” responsibilities include: meal preparation, housekeeping, bathroom assistance, grocery shopping, personal finance management, and transportation to doctor appointments.

However, not all family members are able to devote 100% of their time and energy to these activities.  Fortunately, there are independent local home care agencies available to help provide the necessary care for the patient in the comfort of their own home.  Typically, these services may not be covered under private insurance companies, but financial assistance may be available from a variety of public and private sources such as the US Department of Veterans Affairs (VA), Medicare, Medicaid, and the Older Americans Act.  American Cancer Society’s overview of questions to ask when selecting a Home Care Agency is a great beginning read.

We are continuously amazed by the dedication, perseverance and strength of our caregiver community.  It’s no wonder they are the patient’s trusted companion.

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