Becoming a Caregiver
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 our 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 & 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.
Finding the Right Doctor
Your loved one will need to see an oncologist—a doctor who specializes in treating cancer. Depending on the type of insurance plan you have, you may have a number of options. How to narrow this down? Consider contacting a local cancer support group and asking which doctors they recommend. Ask people you know for referrals.
If your loved one has a rare cancer, it will probably be best to see an oncologist at one of the 69 National Cancer Institute (NCI)-Designated Cancer Centers.
For any type of cancer diagnosis, getting a second opinion is highly recommended. If your loved one is being seen at a community cancer center or by a private doctor, you may want to consider getting a second opinion from a specialist at one of the NCI-Designated Cancer Centers.
Find a Cancer Doctor is another excellent resource for finding a cancer specialist. Created for patients and caregivers by the American Society of Clinical Oncology (ASCO), it allows you to search by location, distance, specialty, language and more.
Key Questions for the Doctor
These questions can help you and your loved one decide who your loved one’s doctor will be. If your loved one prefers to do the talking, you can help by taking notes. A doctor should feel comfortable answering these questions. If she or he does not want to answer them, find another doctor who will.
- How much experience do you (the doctor) have in treating this specific type of cancer?
- Are you board-certified in medical, surgical and/or radiation oncology?
- Are you and our team up-to-date on the latest treatments for this type of cancer? What are the most recent advances?
- Do you and the hospital where treatment will be provided accept our insurance?
- Do you have an oncology nurse and/or oncology social worker on staff to provide us with education and support?
- What other support services are available?
- How and when can we contact you or other members of the cancer team with ongoing questions? (Can we use email? Talk to you on the phone? Or will we only be able to talk to you directly during office visits?)
- Could you give us the name of another oncologist, for a second opinion?
It is easy to feel like everything about cancer is an emergency and that you must make treatment decisions quickly. In almost all cases, however, you do have time to slow down, think about your loved one’s goals and priorities, and talk with others. Slowing down will allow you to gain a sense of control. Take time to ask questions, think through next steps, and partner with the medical team to develop a treatment plan for your loved one.
Key Questions About Treatment Options
These questions can help your loved one as he or she makes treatment decisions. If your loved one prefers to do the talking, you can help by taking notes. Cancer and its treatments are not always easy to understand. Your loved one should know it is perfectly ok to keep asking questions until everything about the treatment, the treatment schedule, and risks and benefits makes sense.
- What is the goal of treatment?
- Why are you recommending one treatment over another?
- What are the benefits of each treatment?
- What are the risks?
- Are clinical trials an option?
- How can we manage or prepare for possible side effects?
- How often will treatment be given, and where?
- How long does each treatment last?
- Does the facility where treatment will be given also offer resources for emotional support?
- If cost is a problem: Are there ways to help our family with the costs of treatment?
After Treatment Ends
The period after treatment ends can open many doors. Most people begin to explore what their “new normal” will be. This can bring a sense of closing one chapter and beginning a new chapter. Life-changing situations such as cancer can give survivors and those around them a chance to pause, learn, grow and think about life in new ways.
Bottom line: Life is different after cancer. If cancer is a part of your loved one’s life, it brings an opportunity for growth for everyone involved.
Many people affected by cancer consider treatment done after the last chemotherapy or radiation appointment. After these treatments end, however, some people may continue to take certain medications to help keep their cancer from coming back. Some people like this. It makes them feel like they are safe or doing something to keep the cancer from coming back. Others may not be happy about it. Their medication may be a daily reminder of cancer. Also, some of these treatments may have side effects.
As a caregiver, you should ask your loved one or friend how he or she is feeling from time to time. You will need to find the right balance between not asking enough, and asking too much. Still, offering to talk is usually helpful.
Long-Term Side Effects
Some treatments can affect your loved one for years to come. For instance, your loved one may develop issues with their heart, lung or bones or with their thinking and memory. Many long-term side effects can be treated, but only if they are identified. You may want to help your loved one find a doctor who has experience treating cancer survivors. You will also want to be sure your loved one has a survivorship care plan.
One of the most common long-term side effects associated with chemotherapy is chemobrain: forgetfulness, lack of concentration, difficulty finding the right words, and difficulty doing more than one thing at the same time. It is something you are likely going to see your loved one experience.
You can learn more about long-term side effects in Beyond Treatment.
Will the Cancer Come Back?
The fear that cancer will return can interfere with every aspect of a person’s life—eating, sleeping, working and playing. Reminders such as follow-up visits, birthdays, someone else’s diagnosis, an ache or a bump can all make this fear come to life. Your loved one may not want to talk about it. You may not want to talk about it either. Fear tends to grow in the silence, however, and talking about it may be helpful for both you and your love one. It may also make your relationship stronger.
Fear About Cancer Coming Back
When you have questions about the possibility of cancer recurrence or other health concerns, write them down and discuss them at follow-up appointments. To cope with this fear, you may also want to:
- Learn the signs that indicate the cancer may have come back.
- Keep up with medical tests or appointments.
- Talk about it.
- Encourage your loved one to take control of what he or she can, and know what you cannot control.
- Make plans for the future. Short- and long-term plans always help.
Cancer can affect a person’s entire social network including:
Children (young or adult)
Friends and co-workers
Children and Teen Family Members
Children understand the world through their parents. How children react to a loved one’s cancer diagnosis depends very much on how their parents or other close adults are dealing with their own feelings. When a parent is sick or stressed, children of all ages can sense this change, even if they do not know why it is happening. You may not always feel like you know what to say, but it’s always best if you can answer their questions truthfully. Remember to openly express your love for them—especially while your family is trying to manage the stress the cancer may be causing.
Friends and Co-Workers
Many people have a wide social network outside the family, such as coworkers, teachers of school-aged children, friends and neighbors. Some of these relationships will be closer than others, and you may want to tell some people about the cancer diagnosis but not others. If your loved one chooses not to tell coworkers or friends about his or her cancer, it is important to honor their decision. If you feel the choice conflicts with your own, you should try to discuss this.
If you do tell friends and coworkers, you will likely find that some relationships grow stronger while others become weaker—as is often the case during stressful times. You also are likely to find that you and your loved one’s friends and coworkers may want to help and support you by cooking meals, arranging carpools or driving you and/or your loved one to and from doctor’s appointments.
These are some of the websites and apps that can help them help you:
- 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 sends out a reminder to be sure the meal arrives.
As you try to support and help the person you love, you must also think about your own needs. What helps you get through bad days? Are you able to throw yourself into your work? Do you enjoy sports or a hard workout at the gym? Are movies or books an escape? How can your friends and family best support you?
Remember: It is not selfish to think about yourself. In fact, it is important that you do so. Caring for yourself is a necessary part of being a caregiver.
It is likely that you and your loved one have a long, sometimes bumpy, road ahead. Remember that there are a lot of people who are eager to help you both. Learn to say “yes, thank you” to some of their offers and try not to do everything yourself. You and your loved one will benefit in many ways from letting your family and friends help you.
To take care of yourself and your loved one, you may find that you need to:
Develop a "New Normal"
Life is not the same after cancer for the survivor or for those who love him or her. When someone you care about has or has had cancer, you need to develop what is often called a “new normal.” For survivorship, this means putting the reality of cancer into your future dreams. It does NOT mean giving up your dreams (retiring to an island, traveling, fishing for hours…), just adjusting your dreams to fit. As things change, your new normal may also change.
As time goes on, life may feel like it used to, especially as your loved one finds they have their energy back, they return to work or start doing other things they used to do. But there also may be times when a regular follow-up appointment, a new lump, or a fever makes you fearful or worried that the cancer has returned. You may find yourself up in the middle of the night, unable to concentrate at work, and/or edgy until you get the “all clear” signal that everything is all right. Over time, you and your loved one will get used to, prepare for, and manage, the ups and downs.
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