Caregiver Resource Guide

• When talking with your loved one, the most important thing is just to listen.
  
• Try to hear and understand how they feel.
• Try to put your own feelings and fears aside.
  
• Let them know that you're open to talking whenever they feel like it.

What this is: People with cancer sometimes take out their anger and frustration on those around them. This can upset family members and friends. 

Why this happens: People often vent their feelings onto those close to them. They do this because these people are safe outlets. They know you’ll still be there for them, even if they behave badly or create tension. So the person with cancer may take out angry feelings on family, friends, or anyone who happens to be around.

What this is: Sometimes a person with cancer seems to become childlike and passive, looking to others for direction.

Why this happens: Try to understand that this is one way of acting out how helpless and weak they feel.

What to do: Though the disease may limit their ability to do some things, it’s usually best for the person with cancer to keep living as normally as possible. You may feel the need to overprotect your loved one, but in the long run that probably isn’t helpful.

What this is: The cancer diagnosis and treatment phase is usually an anxious and uncertain time. 

Why this happens: Because they have so much anxiety in their lives, your loved one with cancer may seem upset or frightened for no reason that you can see.

What this is: Sometimes people with cancer blame themselves for getting the disease because of something they did or did not do. As a caregiver, you may also feel guilty or you may blame them, too.

What to do: Blaming yourself and each other can be barriers to a healthy relationship. Encourage your loved ones and the patient not to blame themselves for what’s going on. Moving forward is the only option. If you feel guilty as a loved one or friend, it’s OK to express your regrets, apologize, and move on.  

• If your loved one is having symptoms or worsening symptoms that they don’t tell you or the doctor about, this can become a problem.
• Try to understand the patient’s reasons for withholding information. You may want to start gently; keep in mind the patient is probably already distressed.
• Sit down with your loved one.
• Ask if there’s something they would like to tell you. If the answer is no, ask if there’s something they don’t want to tell you. Give your loved one a moment to consider it.
• Point out that you’ve noticed signs of a new problem or worsening symptoms. Remind them that this could be a serious problem, or just a new symptom that may be easy for the doctor to address.
• Mention how the problem is affecting both of you.
• If the patient still denies the problem or refuses to discuss it, get help from other loved ones the patient trusts. Or you can call the doctor to share your concerns and find out if there’s something else you can do.

• It’s good to know that you and your loved one don’t always have to agree.
• Remember to let the person with cancer make decisions about their care whenever possible.
• Explain your needs and wants clearly, and let the patient do the same.
• Offer choices or a time limit when decisions need to be made.
• Focus your energy and influence on the issues that are most important.

It’s normal to grieve over the changes that cancer brings to a person’s life. But if a person has been sad for a long time, they may have clinical depression. Clinical depression causes great distress, impairs functioning, and might even make the person with cancer less able to follow their cancer treatment plan.


If the person you are caring for has symptoms of clinical depression, encourage them to get help.

Some of these symptoms, such as weight changes, fatigue, or even forgetfulness can be caused by the cancer itself and its treatment. But if 5 or more of these symptoms happen nearly every day for 2 weeks or more, or are severe enough to interfere with normal activities, it might be depression.

If you suspect you may be depressed, see a doctor. Make time to get the help and support you need as a caregiver.

Symptoms of clinical depression

• Ongoing sad, hopeless, or “empty” mood for most of the day
• Loss of interest or pleasure in almost all activities most of the time
• Major weight loss (when not dieting) or weight gain
• Being slowed down or restless and agitated almost every day, enough for others to notice
• Extreme tiredness (fatigue) or loss of energy
• Trouble sleeping with early waking, sleeping too much, or not being able to sleep
• Trouble focusing thoughts, remembering, or making decisions
• Feeling guilty, worthless, or helpless
• Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts
  

Things to do to help

• Encourage your loved one with depression to continue treatment for depression until symptoms improve, or to talk to the doctor about different treatment if there’s no improvement after 2 or 3 weeks.
• Promote physical activity, especially mild exercise such as daily walks.
• Help make appointments for mental health treatment, if needed.
• Provide transportation for treatment, if needed.
• Engage the person in conversation and activities they enjoy.
• Remember that it’s OK to feel sad and grieve over the losses that cancer has brought to their lives, and to yours.
• Realize that being pessimistic and thinking everything is hopeless are symptoms of depression and should get better with treatment.

Things not to do

• Keep feelings inside.
• Force someone to talk when they’re not ready.
• Blame yourself or another person for feeling depressed.
• Tell a person to cheer up if they seem depressed.
• Try to reason with a person whose depression appears severe. Instead, talk with the doctor about medicines and other kinds of help.
  

Things to do to help

• Encourage, but do not force, each other to talk.
• Share feelings and fears that you or the anxious person may be having.
• Listen carefully to each other’s feelings. Offer support, but don’t deny or discount feelings.
• Remember that it’s OK to feel sad and frustrated.
• Get help through counseling and/or support groups.
• Use meditation, prayer, or other types of spiritual support if it helps.
• Encourage your loved one to try deep breathing and relaxation exercises. They should close their eyes, breathe deeply, focus on each body part and relax it, start with their toes and work up to their head. When relaxed they should try to think of a pleasant place such as a beach in the morning or a sunny field on a spring day.
• Encourage the person you’re providing care for to talk with a doctor about using anti-anxiety or anti-depressant medicines.

Things not to do

• Keep feelings inside.
• Force someone to talk if they’re not ready to.
• Blame yourself or another person for feeling fearful or anxious.
• Try to reason with your loved one if their fears and anxieties are severe; talk with the doctor about medicines and other kinds of help.

Things to do to help

• Check with their doctor to be sure that the symptoms are caused by panic and not another medical problem.
• Stay calm and speak softly during a panic attack.
• Sit with your loved one during panic attacks until they are feeling better.
• Call for help if needed.
• After the panic attack is over, encourage the person to get treatment for the panic attacks.
• Provide transportation to treatment if needed. Your loved one may be afraid that a panic attack will happen while driving.
• The ideas listed under the section “Tips for Handling Anxiety and Fear” may also be helpful for someone having a panic attack.

Things not to do

• Minimize or make light of the person’s terror or fear.
• Judge your loved one for feeling scared and acting strangely.
• Try to talk the person out of their fear or other feelings.
• Hesitate to call the doctor if you have questions about what’s happening.

It’s normal to feel overwhelmed sometimes by caregiver responsibilities. But if it becomes a constant problem, you may need to see a mental health professional. Below is a list of serious signs of trouble. Get professional help if you:

• Feel depressed, physically sick, or hopeless
• Feel like hurting yourself or hurting or yelling at the people you care for
• Depend too heavily on alcohol or recreational drugs
• Fight with your spouse, children, stepchildren, or other family members and friends
• Are no longer taking care of yourself

The social services department at the hospital or doctor’s office may be able to help you or direct you to someone who can. They may be able to suggest support groups in your area for friends and families of people with cancer. Sometimes the hospital chaplain or your own clergy can help. Asking around to find good counselors can be another way to get the support and help you need.

Respite care is the term used to describe short-term, temporary relief for those who are caring for family members who might otherwise need professional care. In most cases, the respite caregiver comes to the home and gets to know the patient, the family routine, and things like where medicines are stored. Sitter-companion services are one respite option. This is sometimes offered by local civic groups, church or religious groups, and other community organizations.

Depending on your state, Medicaid or Medicare may help cover respite costs. Also check with the patient’s health insurance to see what kind of respite help might be offered.

Call the American Cancer Society at 1-800-227-2345 to find respite services in your area.

Caregivers have been shown to have less distress and feel less burdened when they have social support. Human connections can help you stay strong. Let people know what you need and ask for help. You cannot and should not try to be responsible for all the caregiving by yourself.

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.