Support for Caregivers of Cancer Patients

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Dealing with Being a Caregiver

Giving care and support during this time can be a challenge. Many caregivers put their own needs and feelings aside to focus on the person with cancer. This can be hard to maintain for a long time, and it’s not good for your health. The stress can have both physical and psychological effects. If you don’t take care of yourself, you won’t be able to take care of others. It’s important for everyone that you give care to you.

For more information, see the NCI booklet When Someone You Love Is Being Treated for Cancer.

Changing Roles

Whether you're younger or older, you may find yourself in a new role as a caregiver. You may have been an active part of someone's life before, but perhaps now that they are a cancer patient, the way you support them is different. It may be in a way in which you haven't had much experience, or in a way that feels more intense than before. Even though caregiving may feel new to you now, many caregivers say that they learn more as they go through their loved one's cancer experience. Common situations that they describe:

  • Patients may only feel comfortable with a spouse or partner taking care of them
  • Caregivers with children struggle to take care of a parent too
  • Parents may have a hard time accepting help from their adult children
  • Caregivers find it hard to balance taking care of a loved one with job responsibilities
  • Adult children with cancer may not want to rely on their parents for care
  • Caregivers may have health problems themselves, making it physically and emotionally hard to take care of someone else

Whatever your roles are now, it’s very common to feel confused and stressed at this time. If you can, try to share your feelings with others or a join support group. Or you may choose to seek help from a counselor.

Mom was always the rock in the family. Now it's almost as though we're the parents and she's the child. It's hard because we have our own children to take care of and jobs to go to.

Brian

Ask for Help

Many caregivers say that, looking back, they took too much on themselves. Or they wish they had asked for help from friends or family sooner. Take an honest look at what you can and can't do. What things do you need or want to do yourself? What tasks can you turn over or share with people? Be willing to let go of things that others can help you do. Some examples may be:

  • Helping with chores, such as cooking, cleaning, shopping, or yard work
  • Taking care of the kids or picking them up from school or activities
  • Driving your loved one to appointments or picking up medicines
  • Being the contact person to keep others updated

Accepting help from others isn't always easy. But remember that getting help for yourself can also help your loved one—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 useful skills and have extra time to give you. Websites such as SignUpGenius or Lotsa Helping Hands can help you organize requests and tasks.

Be Prepared for Some People Not to Help

When someone has a serious illness, friends and family often reach out to help. And sometimes people you don't know very well also want to give you a hand. But it's important to realize that there are others who may not be able to help you. You might wonder why someone wouldn't offer to help you or your family when you're dealing with so much. Some common reasons are:

  • Some people may be coping with their own problems
  • Some may not have the time
  • They are afraid of cancer or may have already had a bad experience with cancer. They don't want to get involved and feel pain all over again
  • Some people 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 someone isn'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.

Taking Care of Yourself

All family caregivers need support. But you may feel that your needs aren't important right now since you’re not the cancer patient. Or that there's no time left for yourself. You may be so used to taking care of someone else that it's hard for you to change focus. But caring for your own needs, hopes, and desires can give you the strength you need to carry on. (See the Caregiver's Bill of Rights in the booklet When Someone You Love Is Being Treated for Cancer: Support for Caregivers.)

Ways to Take Care of Yourself

Taking time to recharge your mind, body, and spirit can help you be a better caregiver. You may want to think about the following:

Make Time for Yourself

  • Find Time to Relax. Take at least 15-30 minutes each day to do something for yourself. For example, try to make time for a nap, exercise, yard work, a hobby, watching tv or a movie, or whatever you find relaxing. Do gentle exercises, such as stretching or yoga. Or, take deep breaths or just sit still for a minute. See Learning to Relax.
  • Don't Neglect Your Personal Life. Cut back on personal activities, but do not cut them out entirely. For example, look for easy ways to connect with friends.
  • Keep Up Your Routine. If you can, try to keep doing some of your regular activities. If you don't, studies show that it can increase the stress you feel. You may have to do things at a different time of day or for less time than you normally would, but try to still do them.
  • Ask for Help. Find larger chunks of "off-duty" time by asking for help. Find things others can do or arrange for you, such as appointments or errands.

Understand your Feelings

Giving yourself an outlet for your own thoughts and feelings is important. Think about what would help lift your spirits. Would talking with others help ease your load? Or would you rather have quiet time by yourself? Maybe you need both, depending on what's going on in your life. It's helpful for you and others to know what you need.

You may also be able to find some comfort by reading the Feelings section of our website. See if any of them relate to you and what you can do for support.

Join a Support Group

Support groups can meet in person, by phone, or online. They may help you gain new insights into what is happening, get ideas about how to cope, and help you know that you're not alone. In a support group, people may talk about their feelings, trade advice, and try to help others who are dealing with the same kinds of issues. Some people like to go and just listen. And others prefer not to join support groups at all. Some people aren't comfortable with this kind of sharing.

If you can't find a group in your area, try a support group online. Some caregivers say websites with support groups have helped them a lot.

Learn More about Cancer

Sometimes understanding your cancer patient’s medical situation can make you feel more confident and in control. For example, you may want to know more about his stage of cancer. It may help you to know what to expect during treatment, such as the tests and procedures that will be done, as well as the side effects that will result.

Talk to Others about What You're Going Through

Studies show that talking with other people about what you're dealing with is very important to most caregivers. It's especially helpful when you feel overwhelmed or want to say things that you can't say to your loved one with cancer. Try to find someone you can really open up to about your feelings or fears.

You may want to talk with someone outside your inner circle. Some caregivers find it helpful to talk to a counselor, such as a social worker, psychologist, or leader in their faith or spiritual community. These types of experts may be able to help you talk about things that you don't feel you can talk about with friends or family. They can also help you find ways to express your feelings and learn ways to cope that you hadn't thought of before.

Connect with Your Loved One with Cancer

Cancer may bring you and your loved one closer together than ever before. Often people become closer as they face challenges together. If you can, take time to share special moments with one another. Try to gain strength from all you are going through together, and what you have dealt with so far. This may help you move toward the future with a positive outlook and feelings of hope.

Write in a Journal

Research shows that writing or journaling can help relieve negative thoughts and feelings. And it may actually help improve your own health. You might write about your most stressful experiences. Or you may want to express your deepest thoughts and feelings. You can also write about things that make you feel good, such as a pretty day or a kind coworker or friend.

Look for the Positive

It can be hard finding positive moments when you're busy caregiving. It also can be hard to adjust to your role as a caregiver. Caregivers say that looking for the good things in life and feeling gratitude help them feel better. And know that it's okay to laugh, even when your loved one is in treatment. In fact, it's healthy. Laughter releases tension and makes you feel better. Keeping your sense of humor in trying times is a good coping skill.

Be Thankful

You may feel thankful that you can be there for your loved one. You may be glad for a chance to do something positive and give to another person in a way you never knew you could. Some caregivers feel that they've been given the chance to build or strengthen a relationship. This doesn't mean that caregiving is easy or stress-free. But finding meaning in caregiving can make it easier to manage.

Caring for Your Body

When I get home from class, my mom and I take turns running while one of us stays with my dad. My run is my time for me, and the only way I can keep it together.

Gail

You may find yourself so busy and concerned about your loved one that you don't pay attention to your own physical health. But it's very important that you take care of your health, too. Doing so will give you strength to help others. It's important to:

  • Stay up-to-date with your medical needs
    Keep up with your own checkups, screenings, and other appointments.
  • Watch for signs of depression or anxiety
    Stress can cause many different feelings or body changes. But if they last for more than two weeks, talk to your doctor.
  • Take your medicine as prescribed
    Ask your doctor to give you a large prescription to save trips to the pharmacy. Find out if your grocery store or pharmacy delivers.
  • Try to eat healthy meals
    Eating well will help you keep up your strength. If your loved one is in the hospital or has long doctor's appointments, bring easy-to-prepare food from home. For example, sandwiches, salads, or packaged foods and canned meats fit easily into a lunch container.
  • Get enough rest
    Listening to soft music or doing breathing exercises may help you fall asleep. Short naps can energize you if you aren't getting enough sleep. Be sure to talk with your doctor if lack of sleep becomes an ongoing problem.
  • Exercise
    Walking, swimming, running, or bike riding are only a few ways to get your body moving. Any kind of exercise (including working in the garden, cleaning, mowing, or going up stairs) can help you keep your body healthy. Finding at least 15-30 minutes a day to exercise may make you feel better and help manage your stress.

New stresses and daily demands often add to any health problems caregivers already have. And if you are sick or have an injury that requires you to be careful, it's even more important that you take care of yourself. Here are some changes caregivers often have:

  • fatigue (feeling tired)
  • weaker immune system (poor ability to fight off illness)
  • sleep problems
  • slower healing of wounds
  • higher blood pressure
  • changes in appetite or weight
  • headaches
  • anxiety, depression, or other mood changes


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