The Flip Side: Being a Caregiver

A cancer diagnosis affects close friends and family too. This section highlights what to expect if you become a caregiver for a person with cancer, and tips for making sure that you take care of yourself as well.

What is The Role of a Caregiver?

Today, most cancer treatment is given in outpatient treatment centers – not in hospitals. This means someone is needed to be part of the day-to-day care of the person with cancer and that sicker people are being cared for at home. As a result, caregivers have many roles. These roles change as the patient’s needs change during and after cancer treatment. Becoming the primary caregiver for a loved one can be a real challenge. You must learn to balance work, family, and your own needs, while caring for someone else and fulfilling some of the responsibilities he or she used to have. Caregiving requires skills that you may not be familiar with and demands the ability to manage your loved one’s care almost as if it were a complex business project.

On top of the normal day-to-day tasks, such as meals, cleaning, and driving or arranging transportation, as a caregiver, you’ll also become an important part of the cancer care team. This busy schedule could leave you with no time to take care of your own needs. You also may feel the need to turn down job opportunities, work fewer hours, or even retire early to meet the demands of being a caregiver. 

Despite the sadness and shock of having a loved one with cancer, many people find personal satisfaction in caring for that person. You may see it as a meaningful role that allows you to show your love and respect for the person. It may also feel good to be helpful and know that you’re needed by a loved one.

You might find that caregiving enriches your life. You might feel a deep sense of satisfaction, confidence, and accomplishment in caring for someone. You may also learn about inner strengths and abilities that you didn’t even know you had, and find a greater sense of purpose for your own life.

The caregiving role can open up doors to new friends and relationships, too. Through a support group, you can get to know people who have faced the same kinds of problems. Caregiving can also draw families together and help people feel closer to the person who needs care.

Caregiving can also be frustrating and painful. People caring for very sick patients may notice their own feelings of severe sadness and emotional distress. They may feel sadness and grief over their loved one’s illness and may also feel overwhelmed or frustrated as they try to manage many difficult problems.

What if You Don’t Want to be a Caregiver?

It’s quite normal to feel overwhelmed, burdened, and even trapped at times while caregiving. You may feel that the caregiver role was dumped on you without your consent. You may feel unprepared or even unable to manage the responsibilities and feelings that go with it. You may feel pressure from family members, friends, and members of the cancer care team to provide care, despite having little or no desire or ability to do so.

If you became a caregiver because of other people’s wishes, you need to think about how you feel about being pressured into caregiving. Mixed feelings at the onset of this role can lead to a greater sense of frustration later on. You should decide on your limits and make them known as soon as you can – before the demands of caregiving become a problem. It’s not easy to do this when others resist the change, and it can take a lot of courage to do it. If you know you’re going to meet with resistance, talk with the patient’s team social worker first. Or you can ask their doctor about a referral so you can talk with someone about the caregiver problem.

Addressing the problems early can help you and the patient get the help you need, and if you have to, make other plans for care. In situations like this, it might be helpful to find someone to help you with caregiving so that you know from the start that the role will be shared. It also may be better to find someone else to act as the primary (main) caregiver.

There are ways to help reduce stress and remind you to enjoy life. They might help prevent a more serious depression that can develop over time:

  • Support from family and friends in caring for the patient
  • A healthy diet
  • Spiritual support, such as religious activity, prayer, journaling, or meditation
  • Help from a trained mental health professional
  • Activities that involve other people, such as having lunch with a friend
  • Activities that give you a sense of accomplishment, like exercising or finishing a project
  • Activities that make you feel good or relaxed, like watching a funny movie or taking a walk

Make an effort to notice and talk about things you do as they happen during the day. Watch the news or take time to read the morning paper. Set aside time during the day, like during a meal, when you do not talk about illness.

- Tip: Know What You Can’t Do

Most importantly, don’t try to do it all yourself. Caregiving alone for any period of time is not realistic. Reach out to others. Involve them in your life and in the things you must do for your loved one.

Some caregivers feel they have to do it all alone. They may believe that, as the partner, sibling, son, or daughter they’re responsible for the sick loved one. It’s painful for them to admit that they can’t do it all and still keep their own health and sanity. They’ll bend over backward to meet their loved one’s every need. Some feel guilty if they can’t do it all and say they feel “selfish” if they ask for help.

Set realistic limits on what you can do. For instance, if you have a back injury, and/or if your loved one is too big for you to lift, you may be able to help them roll over in bed, but don’t try to lift them alone or catch them when they fall. (You may end up seriously injured or sick and become unable to help anyone.) There are ways you can safely help a person sit up or walk but you have to learn to do it without hurting yourself. This is where expert help is needed – home care nurses or physical therapists can show you how to do it safely. They can also help you get special equipment, if needed.

- Tip: Ask Others for Help

Allowing others to help can take some of the pressure off and give you time to take care of yourself. Often family and friends want to help but may not know how or what you need. Here are some tips for including family and friends:

Look for situations where you need help. Make a list or note them on a calendar.

Hold regular family meetings to keep everyone involved. Use these meetings as updates and care-planning sessions. Include the patient.

Ask family and friends when they can help and what jobs they think they can do. You may also contact a person with a certain request. Be very clear about what you need.

As you hear back from each person, note it on your list to make sure they have taken care of what you needed. 

There are many online resources that can help you manage your job as caregiver. Some sites offer support for people caring for a loved one who has cancer. Other sites have features like group calendars to organize helpers and areas to create personal websites that concerned people can access for updates. Some of these also allow others to sign up for specific tasks when help is needed. Taking full advantage of the resources available to you is another way you can take care of yourself.

Sources:

https://www.mdanderson.org/publications/cancerwise/19-ways-to-help-someone-during-cancer-treatment.h00-159223356.html

https://www.cancer.org/treatment/caregivers.html

http://cancer.ucsf.edu/_docs/crc/Caregiver_GEN-old.pdf

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