Becoming a Caregiver

Linda Brase, M.A., Licensed Professional Counselor

The ripples of a cancer diagnosis extend to spouses, partners, siblings, children and friends. Many of these family members will find they now need to take on the role of caregiver—something they have never done before.

Your main job will be to support and encourage your loved one as they learn about their cancer and make decisions about and then start their cancer treatments. What will this involve? Not all caregivers do all of the same things, but a survey of 66 caregivers who are part of the Cancer Support Community’s  Cancer Experience Registry® found:

  • 91% provided emotional support
  • 80% went with their loved one to medical appointments
  • 68% helped with decision-making
  • 55% coordinated medical care
  • 53% provided transportation
  • 45% helped manage finances

Becoming a caregiver may seem scary or overwhelming. Know that you are not alone: The Caregiver Action Network estimates that during any given year more than 65 million people in the U.S. spend about 20 hours each week caring for an ill, disabled or aged family member or friend.

There is a growing realization that caregivers need support, and there are programs and services that can help you as you care for your loved one. In fact, many caregivers decide to meet regularly with a social worker or join a family or caregiver support group to make sure they will have the time to talk about their own fears or worries. Support groups are also a good place to get information and advice about caregiving and cancer.

Remember: Sometimes the best thing you can do for your loved one is to just sit quietly together — be present, in the moment, sharing time.

THE CAREGIVER ROLE AND CANCER TREATMENT

As you and your loved one learn more about the cancer, you will find that you need to go to many medical appointments with many different doctors and you will have an important role to play during this time. Try to keep in mind that caring for someone you love with cancer is about the relationship you share together, and that this relationship is going to have to expand in new ways as you learn to manage the stress that cancer has brought into your lives.

 As a caregiver, you may feel like you need to “take charge.” But keep in mind that it is your loved one who is in charge. In fact, many people with cancer prefer to do most of the talking with their medical team. If you ask all of the questions, you may make your loved one feel like they are losing control, or having it taken away from them. Also, try not to talk to the doctor in a way that makes your loved one feel left out of the conversation or as if he or she isn’t in the room. It may be helpful to talk with your loved one before you see the doctor about when, or if, he or she wants you to speak with the health care team or take the lead.

As your loved one starts talking to doctors about treatment options, you may want to:

  • Help your loved one start a notebook or keep a folder or find a specific place to keep paperwork with information about test results, treatment options, insurance issues, doctor’s phone numbers and community resources.
  • Help your loved one create a list of questions she or he wants to ask the doctors you meet with. Having these questions written down means you won’t forget to ask them while you are there.

Family members, spouses, partners and friends who take on a caregiving role have a unique relationship to cancer. Caregivers see and experience firsthand how deep and wide cancer’s emotional impact can be. They learn how quickly life can become complicated and constrained by a cancer diagnosis. They become attuned to a new reality of making appointments, managing treatments and deciphering insurance forms and medical fees. Yet, all too often, others don’t “see” how much you, the caregiver, are doing. Your loved one is at the center of the orbit of cancer care, and friends and other family members may not recognize the toll it is taking on you to provide the care your loved one needs.

Taking care of someone with cancer can be a challenging experience. As a caregiver, you are likely to experience a wide range of feelings, fluctuating between joy and sadness or from camaraderie to loneliness—maybe even all in one day.

The life-threatening diagnosis isn’t yours, but many of the things that accompany a cancer diagnosis are likely to land on your shoulders: stress, uncertainty, bills, paper work, phone calls, and many of the mundane tasks that your loved one managed before cancer. That is a lot for anyone to take on. And as the days and weeks go by, you may come to believe your needs are less important because you don’t have cancer, feel guilty when doing something just for you or find yourself envious of all the support your loved one is getting. You may push things aside to focus on them, only to later find you resent all that you have given up. All of these feelings and emotions are completely normal, and talking about them may help you feel better.

SAY “YES” TO HELP

Helping a loved one with cancer can make your life feel like it is spinning out of control. Your responsibilities as a caregiver will create new routines and demands. Yet at the same time, you are still going to manage everything you were doing before the cancer diagnosis.

As a caregiver, it is important to maintain a balance between managing the needs of your loved one and the daily activities of your life. You might rightfully predict the stress associated with navigating multiple doctors’ appointments in a week, yet you might be surprised at the weariness that comes from mundane, repetitive and somewhat intimate tasks required of you, such as buttoning each button of the shirt of a loved one who has numbing neuropathy in the fingers.

Whether the new tasks are large or small, organization will be key as you integrate new responsibilities with old ones. So will patience. Sometimes the laundry won’t get done. Sometimes takeout meals will replace home cooking. And that’s fine. Try to prioritize your to-do list. Ask yourself: What is most important to do right now? What can wait until later today, tomorrow or next week? What can other people help with? If it doesn’t all get done, try not to be hard on yourself.

You are human, and you are doing the best you can.

PRIORITIZE AND DELEGATE

As a caregiver, one of the questions you may hear most is, “What can I do to help?” There are now a number of websites and apps that make it easier than ever for caregivers to get help with meals, carpools, appointments and other day-to-day tasks. (If you don’t have the time to set up the schedule, have someone who wants to help do it for you!) These websites and apps won’t only help your loved one with cancer. They will also help you take care of yourself.

Some of the resources available include:

CANCER SUPPORT COMMUNITY RESOURCES

The Cancer Support Community’s (CSC) resources and programs are available free of charge. To access any of these resources call 1-888-793-9355 or visit

CareZone: Allows you to organize files, contacts and medications as well as create a calendar, to-do list and journal you can share with family members, friends and other caregivers.

CaringBridge: Lets you share information and updates with friends and family members.

Caregiver Action Network

Family Caregiver Alliance

LotsaHelpingHands: Makes it easy to post requests for all types of support, such as meals, rides and visits. Volunteers automatically receive email reminders.

MealTrainPlus: Allows you to organize meals, childcare, housework, visitors and carpools and sends reminder emails, so you don’t have to.

TakeThemaMeal: Lets volunteers quickly and easily sign up to bring a daily meal and automatically sends out a reminder to ensure the meal arrives.

Only you can determine which type of support system works best for your lifestyle, goals and schedule. It’s easy to feel overcome by the responsibilities of caregiving. When this happens, remember that there are many people who know that caregivers need support too, and have spent time thinking about and organizing support that would be right for you. They would love for you to take advantage of what they have to offer.

This article was compiled from the Cancer Support Community’s caregiving web pages and the Cancer Support Community’s Frankly Speaking About Cancer: Caring for a Loved One fact sheet with permission from Cancer Support Community. Linda Brase, Licensed Professional Counselor, compiled the article. Linda received her M.A. in Counseling from St. Edward’s University in Austin, Texas with an emphasis in Medical Crisis Counseling. She is a medical and healthcare counselor specializing in assisting families dealing with cancer diagnosis, long-term illness, and pre-surgical psychological issues

Please contact your patient navigator to discuss ways to talk to your support team and to see if there are other resources available to you and your caregivers.  We have partnered up with local resources to provide free meals, house cleaning to clients in treatment and much, much more.  If you do not have a patient navigator, please call our helpline at 512-524-2560.

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