A cancer diagnosis affects more than the person who has cancer. The diagnosis brings changes and a variety of emotions to the person’s loved ones, as well. Someone close to the person with cancer, often a spouse, partner, parent or adult child, typically takes on the role of caregiver. The caregiver helps the person with cancer physically, medically and emotionally.
The role of the caregiver has become more important as an increasing number of people with cancer are being treated in outpatient treatment centers. As a result, the patient needs more support and help at home from family and friends. According to the American Cancer Society, families now provide about 80 percent of home care services — services that used to be provided by trained health care professionals.
In addition to providing emotional and physical support, caregivers also advocate for their loved ones. Your role as a caregiver will change as your loved one’s cancer and treatment change. People with cancer need different things at different times.
Being a caregiver is challenging, but it’s also important and rewarding. As a caregiver, you can have a positive effect on the health and happiness of your loved one. Here is a list of things to keep in mind as you take on this new role:
1. Communicate openly
Healthy communication between you and your loved one with cancer can reduce frustrations and help both of you manage difficult emotions. Make your feelings heard, but be sensitive to your loved one’s feelings. Be realistic and flexible in your communication, always taking cues from your loved one. And convey your openness to all conversations — even the tough ones.
Also, make an agreement with your loved one to always be honest with you. If your loved one is feeling worse, you need to know it. If they see or talk to the doctor without you, get an update. The only way you can help and be the best caregiver possible is by staying informed.
2. Manage information
Bring a list of your loved one’s medications, allergies, past treatments, doctors and consultants, current physical and mental state and an advance directive to doctor’s visits. Write down questions that you or your loved one have and bring them to the visit. Take notes during visits to help your loved one remember all of the details.
3. Educate yourself
Many people with cancer may not understand — or are not ready to digest — the medical information that comes with their diagnosis. As a caregiver, you may need to help interpret treatment options and manage physical symptoms. It’s normal to feel unprepared to make informed decisions, but numerous resources can help. Doctors, nurses and pharmacists are all helpful sources of information, so get to know the health care team. Take notes and ask questions during appointments.
4. Get organized
As a caregiver, you’ll face a lengthy list of practical day-to-day issues, such as providing transportation and organizing paperwork. Paying for expensive medications and monitoring insurance coverage are also important. To help stay organized, keep your notes in one place and maintain a list of all medicines your loved one is taking. If you need help tracking doctor bills and insurance payments, ask a friend or family member for help. See Financial Help for Patients & Families for a list of financial resources.
5. Don’t “overfunction”
Because of side effects and a full appointment schedule, your loved one may not be able to carry out routine tasks. You may need to take on many of them. Although it may be tempting to overfunction in an attempt to help as much as possible, try not to do anything that your loved one is able to do. Letting them do what he or she can gives a feeling of control. Do your best to keep life as normal as possible, and let your loved one decide when help is needed.
6. Accept change
Cancer is not always predictable, so what you hope for as a caregiver may change throughout the course of your loved one’s disease. You may have a lofty hope for a return to normalcy one day and a simple hope for less suffering the next — and that’s OK. Just do your best to remain realistic and flexible, and look for ways to treasure each day just as it is. Your loved one will need different kinds of help at different stages of treatment, so be ready for your role to evolve.
7. Remember your own basic needs
One of the key things you can do as a caregiver is take care of yourself. Caring for your own needs and getting the help you need makes you a better caregiver. Many caregivers experience both physical and emotional fatigue, often neglecting their own needs for nutrition, sleep, exercise and socialization. Do not underestimate the toll this can take on you. Stick to your normal routine as much as possible, and don’t feel guilty when you take time to care for yourself.
8. Plan time for yourself
Set aside time each day to do something you enjoy. Meet a friend for lunch, take a walk or watch a funny movie. Don’t think of these activities as selfish. It’s important to stay in touch with your own interests.
9. Ask for help
Family and friends often want to help, but they may not know how. To direct them, create a clear list of areas where you could use a hand and ask them which tasks they’d like to tackle.
10. Seek out support
Many caregivers who suspend their own lives report feelings of loneliness and isolation. Although caregivers can feel anxiety or depression, many caregivers don’t realize that they need support, too. Consider joining local support groups or educational programs at your cancer center. Online resources may also be helpful. Talking with other caregivers, either in person or online, can help provide the support you need. See the Patient and Caregivers Resources page for a full listing.
11. Embrace your role
Although being a caregiver is likely to be the hardest job you ever do, it may also bring you closer to your loved one. Your role as caregiver lets you demonstrate your love and respect for your loved one, and it can give you a deep sense of satisfaction and accomplishment. Through this role, you may find a new sense of purpose in life, and you’ll undoubtedly learn things about yourself and your loved one.
Offer an extended block of time to your loved one so that you have plenty of time to get to doctors’ visits or do other errands.
Coordinate housework to happen while you are at doctors’ visits, or set aside a block of time to help do the house chores. The most important time for extra cleaning will be when your loved one is receiving chemotherapy, if that is part of their treatments.
Prepare meals for your loved one. Not the best cook? Order in. Be sure to ask about special diet needs before planning your menu. Ask if you can create a meal schedule to avoid duplication. Also, no doubt friends and other family will want to help. Don’t turn them down. Give them explicit requests what types of meals to prepare and bring over. (If you tell them you “will get back to them,” you won’t, and if you tell them to fix any type of meal, you will receive high-fat and high-calorie comfort foods which are not the ideal food options.)
This activity can be stressful and overwhelming for your loved one who may not be feeling well. Plan trips in advance to relieve the stress of shopping, or volunteer to shop. Ordering online whenever possible is one of the best ways to preserve valuable time and energy for both of you.
16. Address legal issues
Help set up or find resources for long-term medical directives, including an Advance Medical Directive or Durable Power of Attorney for Healthcare. Also known as a health care agent or proxy, this person is appointed to make decisions about medical care if your loved one cannot. Even if your loved one has been diagnosed early and is anticipated to do well after treatment, everyone should have such documents in the event of emergencies.
17. Care for kids
Help your loved one enjoy some downtime by entertaining the kids. Your activity doesn’t have to be costly — an afternoon at the park, in the library or at your house is fine. If your loved one prefers not to be left alone, offer to come over and entertain the kids at home. Recognize too that young children may feel worried or confused about why their parent is ill and needs help. They may not have brought this up to either of their parents but might mention it to you. Be prepared for such a discussion by being honest while supportive and dispel any concerns that a child may have regarding the child having caused their parent to become ill. A great activity for youngsters to do is to make posters and get well cards for their parent who is undergoing cancer treatment. This is a win-win because the child is occupied and feels they are actively contributing to their parent feeling better; the ill parent enjoys these hand made creations and it starts a dialogue between the parent and child.
18. Care for teens
It’s true, teens don’t require much care per se. But they are teens and need to be treated as teens. Commonly when a parent is ill, for whatever reason, the teen is thrust into assuming a lot of adult responsibilities — cooking, cleaning or babysitting — and may not be able to spend time on the weekends with their friends because of these added chores. Step in and make sure that teens still get to be teens and that when they help out, they are rewarded for pitching in. Give them an opportunity to communicate with you so they can tell you their concerns and feelings.
19. Care for pets
If a loved one has pets, offer to pet sit or consider boarding the pet if the person will be away from home for an extended time. Take the dog for a walk or to the dog park. Pet treats and toys are always a nice surprise. Pets can sense when the owner they love is ill. They may behave differently by wanting to be in the room or even in the bed more with their owner. Sometimes pets have changes in sleeping habits due to concerns for their loved one they cannot express to us.
20. Handle outdoor chores
Mow the lawn, trim the hedges or shovel snow while your loved one is going through treatment. Or, find a service that will handle these chores.
Invite a friend over to do or talk about something with your loved one that is completely unrelated to cancer. Both you and your loved one will enjoy the break. Rent a movie that you both want to see. Even something as simple as a cup of tea to share together and discussions about upcoming holidays or past events can serve as a good distraction from thinking about cancer.