Embracing the Role of a Physical and Emotional Caregiver
As a caregiver, you will be instrumental in your loved one’s treatment and recovery. Your emotional support, kindness, commitment and determination will make a difference. Although you may feel unsure about your ability to be an effective caregiver, it’s important to know that you don’t need caregiving experience to be valuable. Think about the times you’ve encouraged and comforted friends in other situations or organized and planned events. These are skills you can draw upon. Know that you don’t have to take on this role alone. Accept help from friends, family members and the community. Working together, you can make a significant difference as you assume these and other responsibilities.
- Attend medical visits. Go along to learn about the type of breast cancer, treatment options and other aspects of care. The nurse or patient navigator can answer questions, offer resources, relay information to the care team and indicate which appointments will be most beneficial for you to attend. Ask for copies of test results, surgical procedures, treatments received, etc.
- Treat her the same as you did before. Remind her that she is the same person she was before the cancer diagnosis. She may look different on the outside without her breasts or her hair, but let her know that you don’t see her any differently. This is important because she may not feel like herself and may be very self-conscious about her changed appearance.
- Be mindful of your loved one’s feelings. Sometimes she will want to talk about cancer, and sometimes she won’t. Don’t dismiss her feelings by saying such things as “Don’t worry about it” or “It’s going to be fine.” Just listening is often a source of comfort.
- Give and track medication. Your loved one must take the right dose of the right medication at the right time for her treatment to be most effective. Create a chart or set reminders or alarms to make it easier to stay on schedule. She will likely be taking oral medications for several years after active treatment, and she may become frustrated with it. You can encourage her by reminding her that the medications help reduce her risk of a recurrence.
- Find a support group for your loved one and yourself. Ask her nurse or patient navigator for a referral to a local or online cancer support group, peer-to-peer counseling and a cancer caregivers’ support group. Online groups give you the option of connecting with others without having to leave home.
- Help manage side effects. Learn which side effects to watch for, when they will likely occur, and what to do if they do. Minimizing and managing them may improve your loved one’s outcome and will improve her quality of life.
- Know when to seek professional help. There may be a time when she needs to talk with a mental health professional or therapist. Her health care team can recommend a resource.
- Take care of yourself. To be the best source of support for your loved one, you must care for yourself physically and emotionally. Self-care will help you feel re-energized, happier and better prepared for your ongoing caregiving role. Don’t feel guilty about recharging your batteries. It’s necessary to provide the care and support your loved one needs from you. Go to the gym. Get in a run before dinner. Do things in the house that are distracting and not related to her cancer care. Find something to laugh about every day; it is a great way to reduce stress. Make healthy food choices. There is a tendency when feeling stressed and overwhelmed to eat fast food or comfort foods that are high in calories and fat content. That means you may gain weight, which may not be something you want to do.
Caregiving at a Distance
Years ago, family members tended to live in the same city or even the same neighborhood. Today, people move all over the globe for personal and professional reasons. The distance can be especially difficult when a loved one becomes ill and needs care. Though long-distance caregiving can be challenging, there are ways to help manage the situation:
- Set up an in-person visit with the doctor and nurse. If possible, plan a trip to meet the medical team and explain that although you will not be at each appointment, you will be an integral part of your loved one’s care. Make arrangements to be included in key conversations via a conference call or video chat. Provide your phone number and email address, and ask about their preferred method of communication. If there is an electronic patient portal, request access.
- Arrange for home health services. Talk with the nurse navigator about the level of care that will be needed, from personal care, such as bathing, and meal preparation to giving medication and providing transportation. The nurse navigator, case manager or social worker can recommend local resources.
- Organize local support. Ask neighbors, friends or your loved one’s religious organization to pitch in. Your loved one’s local community will be a great resource for bringing meals, in-person visits and alerting you if issues arise.
- Set up a schedule to talk with your loved one, such as a Sunday afternoon phone call. It’s a good feeling to be able to count on that regular communication.
- Plan for the unexpected. Set aside funds and vacation days at work in case you suddenly need to be with your loved one. Designate a friend who is able to watch your children, pets or home with little notice.
- Surround yourself with support. You may feel guilty that you’re not there for daily assistance. Find a counselor or support group who understands the challenges of long-distance caregiving.
For the male partner of a woman with breast cancer: Show you care, and let yourself be cared for
You may struggle with being her caregiver, and you may not feel qualified to provide the type of care you think she needs. By the same token, it may be hard for her to ask you for help, so you have to take the lead. Two simple rules can take the guesswork out of how to approach this sensitive time.
Rule #1: Don’t overthink your role. She may not feel well physically or emotionally, so think about what might make her feel better in that moment. When in doubt, just ask. She may find comfort in these thoughtful actions:
- Rub her feet.
- Snuggle in for a movie of her choice.
- Take over her least favorite household chore.
- Give her some alone time.
- Tell her she’s beautiful (or strong, or funny, or smart…).
- Make her laugh, and let her cry.
- Be her biggest supporter. She’ll count on your positivity and upbeat attitude, and it may rub off on her.
Rule #2: Caring for yourself is an absolute must.
- Ask family and friends for help. They’ll want to, and you can’t shoulder it all on your own so it’s a win-win.
- Go to the gym. Exercise is a great outlet for the anger, anxiety and other emotions you’re feeling.
- Speaking of emotions, don’t ignore yours. Allow yourself to feel whatever you need to feel. Most importantly, don’t be afraid to cry.
- Don’t take it personally if she is angry. She’s most likely angry at the situation, not you. Patience and flexibility are crucial.
- Cover the basics: eat right, sleep enough, exercise and keep your regular medical appointments. You need to be on your game, and you won’t be if you neglect yourself.
- American Society of Clinical Oncology
- Family Caregivers Alliance
- Men Against Breast Cancer