Tips on Caregiving

This podcast was originally published on Cancer.net on November 14, 2011, here.

 

What to expect as a caregiver to a person with cancer and tips on effectively giving care.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors that care for people with cancer.

Our topic today is how to care for a loved one when he or she has been diagnosed with cancer.

A caregiver is someone who provides physical, emotional, and practical care to a person with cancer. As a caregiver, you play a very important role in this person’s treatment plan. In this podcast, we’ll talk about ways to become an effective caregiver.

It’s best to think of caregiving as teamwork. Remember that health care professionals, other family members, and friends are there to help. Each member brings different skills and strengths to the group, with the common goal being effective care. Whenever possible, make sure that the person with cancer has a central role in discussions and decisions about his or her care.

Caregiving is often both fulfilling and challenging. From the beginning, do your best to stay positive about the challenges of caregiving. Your attitude will help set the stage for the care you provide. In order to do this, recognize your own strengths and limitations as a caregiver. Compassionate caregivers must recognize when they need a break so they don’t become overwhelmed or burned out.

Planning ahead and taking charge, also called being proactive, can help prevent time crunches or conflicts. Develop a list of tasks that must get done. Rank the importance of each task on the list, and then divide the tasks between friends, family, health care professionals, and other volunteers. Also, make a schedule that maps out blocks of time during which certain relatives or friends are available to make phone calls, run errands, or provide transportation. This schedule can help you find assistance when the patient needs it, while also giving everyone on the team time away from caregiving duties.

Every caregiver acts as a problem-solver. To be a good problem-solver, there are three main steps: identify the problem itself, find out what needs to be done to solve it, and then take action to fix it, which can include enlisting others to help. Don’t forget that volunteer and professional services can help with home care, meals, housekeeping, and everyday activities. Some community agencies and cancer centers have volunteers who provide transportation or help resolve insurance issues. Ask a hospital social worker or the doctor’s office about these options.

Now, let’s talk about caring for the emotional well-being of the person with cancer. Many caregivers find that their hardest task is maintaining good communication with the patient. This is also the caregiver’s most important job. While you will likely become a liaison between the patient and the health care team, it is also important to assure your loved one that he or she will retain decision-making power over his or her own cancer care and treatment.

Accept the limitations of the person with cancer. Someone who is seriously ill may not be able to recognize all of the things you do. Your role as a caregiver will shift and change with the person’s health issues.

It’s valuable to help the person with cancer stay connected to others, even if he or she can’t actively be a part of things in the same way. Look for other opportunities to encourage involvement and to maintain a sense of normalcy for the patient. It’s also important to remember to allow yourself some time to reconnect with supportive friends and family outside of your caregiving duties. Keeping yourself well — both emotionally and physically — allows you to be a more effective caregiver.

Next, let’s discuss how you may need to help with medical and physical care. A good first step is to learn as much as possible about the person’s specific type of cancer. Ask the doctor and visit www.cancer.net for information about how this disease is diagnosed and treated.

This information will help you be an advocate for your loved one. If possible, go to all medical appointments. During these

appointments, you may have to be the one telling the doctor about changes in the patient’s condition. Be as specific as you can, and don’t be afraid to ask the doctor to repeat or explain something you do not understand. It’s helpful to bring a list of questions for the doctor, and then write down or record the answers and other important information from the appointment. Also, help the person keep a record of medical appointments, test results, medications and dosages, symptoms and side effects, new questions between appointments, and names and numbers for resources.

It may also be necessary for you to learn to provide proper physical care. Talk with the health care team about what the patient may or may not be able to do during and after treatment. This may involve bathing, dressing, eating, and using the toilet. If so, look for guidance from the health care team, as well as manuals, books, or videos to learn the right way to provide this assistance, or hire professional help.

To help address financial issues, find out if the insurance company can provide a case manager. This representative can advise you about benefits and covered services, such as professional in-home care. They can also troubleshoot insurance problems.  Medical care can be costly. Talk with a social worker at the cancer center or doctor’s office to learn about the financial resources that are available to help.

Also, explore any legal aspects regarding your loved one’s medical care, and talk with a social worker or lawyer to help you. For instance, a document called an advance directive provides legal evidence of a person’s wishes about their own medical care. A living will and a durable power of attorney may also be needed. And, anyone with cancer should appoint a health care proxy to speak for him or her if the person is ever unable to do so. This decision should be made at the start of treatment and needs to be communicated clearly to others on the health care team.

As you know, there are challenges ahead in your role as caregiver to a person with cancer. However, communication and organization can help you avoid or overcome them and enable you to be an effective caregiver.

For more information on this topic, visit www.cancer.net. Thank you for listening to this Cancer.Net podcast.