Questions About Cancer? 1-800-4-CANCER

When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

Getting Support

Knowing Your Strengths and Limits
Why Getting Help Is Important
How Can Others Help You?
Who Can Help?
Be Prepared for Some People to Say "No"
Long-Distance Caregiving

Knowing Your Strengths and Limits

"You have to learn that if people offer, let them do something. Tell them what you need to have done, because they don't know. You have to be willing to let go of your pride and let them help you." — Lynn

You may be faced with new challenges and concerns now that your loved one has advanced cancer. If the illness has been going on for a long time, these challenges may wear you down even more. Many caregivers say that, looking back, they took on too much themselves. Or they wish they had asked for help sooner in sharing tasks or seeking support. Take an honest look at what you can and can't do. What things are you good at or need to do yourself? What tasks can you give to or share with others? Be willing to let go of things that others can do.

Many people probably want to help but don't know what you need or whether you want help. And as the cancer progresses, you may see changes in the support you get from others. For example:

  • People who have helped before may not help now.
  • Others who have helped before may want to help in new ways now.
  • People who haven't helped before may start helping now.
  • Agencies that couldn't help before may offer services now.

Why Getting Help Is Important

"I have been the main caregiver the whole time. At first, we had emotional support from the church and friends and so on, but over time they have just faded off. I have been stressed beyond belief." — Marion

Many people don't want support when they need it most, so it's normal to feel this way. You may pull back from your regular social life and people in general. You may feel that it's just too much work to ask for help. Some caregivers have said that more people helped them in the beginning. But as time went on, they felt abandoned.

Accepting help from others isn't always easy. When tough things happen, some people tend to pull away. They think, "We can handle this on our own." But things can get harder as your loved one continues to go through treatment. You may need to change your schedule and take on new tasks. As a result, many caregivers have said, "There's just too much on my plate." They feel stretched to the point that they can't do it anymore. As simple as it sounds, it's good to remind others that you still need help.

Remember that getting help for yourself can also help your loved one, as well as other friends and family.

  • You may stay healthier.
  • Your loved one may feel less guilty about all the things that you're doing.
  • Some of your helpers may offer time and skills that you don't have.
  • Having a support system is a way of taking care of your family. The idea is to remove some tasks so that you can focus on those that you can do.

Talk with someone you trust, such as a friend, member of your faith community, or counselor. Other people may be able to help you sort out your thoughts and feelings. They may also be able to help you find other ways to get support.

"I was taking on way too much. When I finally asked, more people than I expected were more than willing to help." — Laney

Keeping a Balance with Visitors

You may have many more people calling you or coming by to visit than ever before. Many caregivers say they feel very blessed when people show they care. Although you probably are very thankful for their love and support, there may be times when you need some space. It's okay if you need time to yourself or just with your family. Some things you can do are:

  • Let your voice mail pick up the messages.
  • Answer the phone in shifts. Take turns with family members or friends to be in charge of calls for a few hours.
  • Put a sign on the door of your home or hospital room thanking people for coming by, but let them know your loved one is resting. Leave room for a note if they want to write one.
  • Have a friend in your home handle visitors while you can be in another part of your home taking care of your own needs.
  • Go to a place where you can't be reached for a while.

How Can Others Help You?

Many people want to help, but they don't know what you need or how to offer help. It's okay for you to take the first step. Ask for what you need and for the things that would help you most. For instance, you may want someone to:

  • Help with household chores, including cooking, cleaning, shopping, yard work, and childcare or eldercare.
  • Talk and share your feelings.
  • Drive your loved one to appointments.
  • Pick up a child from school or activities.
  • Pick up a prescription.
  • Look up information you need.
  • Be the contact person and help keep others updated on your loved one.

Who Can Help?

"The people that I had thought would help me weren't there. It was the ones that I really didn't expect to help that were right there saying, 'I'm here for you. What can I do?'" — Antoine

Think about people who can help you with tasks. Besides friends and family, think of all the people and groups you and your loved one know. Some examples are neighbors, coworkers, and members of your faith community. The hospital or cancer center may also be able to tell you about services they offer or give you a list of agencies to call. Social workers can also put you in touch with support services.

Be Prepared for Some People to Say "No"

Sometimes people may not be able to help. This may hurt your feelings or make you angry. It may be especially hard coming from those you expected to help you. You might wonder why someone wouldn't offer to help. Some common reasons are:

  • People may be coping with their own problems. Or they may not have enough time.
  • People are afraid of cancer or may have already had a bad experience with cancer. They don't want to get involved and feel that pain again.
  • Some believe it's best to keep a distance when people are struggling.
  • Sometimes people don't realize how hard things really are for you. Or they don't understand that you need help, unless you ask them  for it directly.
  • Some people feel awkward because they don't know how to show they care.

If people aren't giving you the help you need, you may want to talk to them and explain your needs. Or you can just let it go. But if the relationship is important, you may want to tell the person how you feel. This can help prevent resentment or stress from building up. These feelings could hurt your relationship in the long run.

Long-Distance Caregiving

"My brother is getting worse - he had a bad reaction the other day. I felt so helpless since he was in Colorado and I was here in Georgia. I try to call when I can, but it's so frustrating not knowing for sure what's going on. I don't like feeling so removed." — Deondra

It can be really tough to be away from your loved one with cancer. You may feel like you're always a step behind in knowing what's happening with care. Yet even if you live far away, it's possible for you to give support and be a care coordinator.

Caregivers who live more than an hour away often rely on the telephone or e-mail as their link. But assessing someone's needs this way can be limiting. You know that you would rush to your loved one's side for a true medical emergency. But other situations are harder to judge. When can you handle things by phone, and when do you need to be there in person?

Finding Contacts

Many caregivers say that it helps to explore both paid and volunteer support. Try to create a support network of people who live near your loved one. These should be people who you could call day or night and count on in times of crisis. You may also want them to check in with your loved one from time to time.

You could also look into volunteer visitors, adult daycare centers, or meal delivery. Local agencies on aging often list resources online. Checking the white and yellow pages in print or online is useful, too. Give your phone numbers to your loved one's health care team and others for emergencies.

Other Tips

  • Ask a local family member or friend to update you daily by email. Or, consider joining a caregiver web site or creating a website to share news about your loved one's condition and needs.
  • Talk to electronic or computer experts about other ways to connect with people. New advances using video and the Internet are being made every day.
  • Airlines or bus lines may have special deals for patients or family members. The hospital social worker may also know of other resources, such as private pilots or companies that help people with cancer and their families.
  • If you are traveling to see your loved one, time your flights or drives so that you have time to rest when you return. Many long-distance caregivers say that they don't allow themselves enough time to rest after their visits.
  • Consider getting a phone card from a discount store to cut down on long-distance bills. Or, review your long-distance and cell phone plans. See if you can make any changes that would reduce your bills.