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When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

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Working with the Health Care Team

Asking About Pain
Asking About Other Changes
General Tips for Meeting with the Health Care Team

Your situation may be changing a lot now. It's very important to keep asking questions. Some caregivers feel that they were given a lot of information early on, but not as much later. And learning all the unknowns of the different care and treatment options can be stressful.

It's important for you and your loved one to sit down with the health care team. You need to talk about future steps and what to expect. You may be afraid of what you might hear. But other caregivers have said that they felt reassured after learning their options. It made them able to plan ahead.

Some people with cancer want to know everything. Others let their caregivers make the decisions. Sometimes these differences are cultural. Other times they are personal. The patient, your family, and you should decide who will be the primary contact for the health care team.

Asking About Pain

"It can be hard for me as a doctor, because many times I see patients who want to know everything. And then I have caregivers who don't want me to tell the patient everything. Yet the reality is that the patients know their bodies--they know what's going on. So sometimes I get a situation where everyone knows the truth but tries to keep it from the other person to protect them." — Dr. Crawford

People who have their pain managed are able to focus on enjoying life. Caregivers often worry about their loved one being in pain. If they are preoccupied by pain, you may notice changes in their personality, such as being distant, not being able to sleep, or not being able to focus on daily activities they once enjoyed.

Your loved one does not have to be in pain or in any discomfort. Some people assume that there will always be severe pain with cancer treatment. This is not true. Pain can be managed throughout treatment. The key is to talk regularly with the health care team about pain and other symptoms. You may want to ask if there is a pain specialist on staff as well.

Sometimes people with cancer don't want to talk to the health care team about their pain. They worry that others will think that they're complaining or that pain means the cancer is getting worse. Or they think that pain is just something they have to accept. Sometimes people get so used to pain, they forget what it's like to live without it. The medical team should ask about pain levels, but it's up to you and the patient to be open about any pain she is having.

This is when it's important for you to encourage her to speak up. Or you can speak up for her. Be honest with the doctor about pain and how it's affecting her routine. It may take more than one talk to feel comfortable about the pain medicines given. Some caregivers worry that they will give their loved one too much medicine. This rarely happens, but it's important for you to talk to the doctor about your fears and concerns.

Talk with the health care team about how to keep your loved one as comfortable as possible. Make sure to include any hospice staff you may have. There are drugs that can help treat pain. These drugs can also be adjusted or changed if they aren't working or have unpleasant side effects.

Don't be afraid to ask for stronger pain relievers or larger doses if the patient needs them. Addiction is not an issue in people with advanced cancer. Instead, they will help your loved one stay as comfortable as possible. People with a history of addiction will want to talk to their doctor about any concerns. For more information, see the NCI booklet, Pain Control.

Your Loved One's Eating

It's okay to offer your loved one food, but try not to pressure him to eat. We often think of eating well as bringing good health. But when people have advanced cancer, they may not have an appetite. Also, their bodies may need less food than in the past. Or, some people find it easier to eat smaller portions more often, rather than three full meals a day.

Although giving food may be a way you feel you can nurture your loved one, it's important for you to try not to force him to eat. There are a lot of changes going on in the body, and he needs to decide when he is hungry. Trust that he knows what is best for his body. If you are worried that your loved one isn't eating enough or eating properly, ask the doctor or nurse for an opinion.

Asking About Other Changes

"No one told us what steroids would do. My partner started to have mood swings all of a sudden. She'd get really angry at me for no reason. Her nurse told me later this was common when taking these drugs, but how was I supposed to know that?" — Pat

Sometimes, as treatment continues, changes may take place in the person with cancer. These may be due to the side effects of treatment or the cancer itself. Or they may be caused by other drugs. Some caregivers have said that they wished they had known about these changes sooner. They wished they had known what to expect.

Changes may occur in:

  • Looks
  • Personality or mood
  • Memory
  • Sleep
  • Appetite or nutrition needs

The person you are caring for may or may not go through any of these changes. But you should ask the doctor whether you need to be aware of them. At the same time, ask what you can do about them if they happen. It will help you to know that these changes are normal, and give you ways to be prepared.

Some caregivers who have lost their loved one say they wished they had known the signs that death is near. They say this would have helped them be less afraid or worried. A list of the most common signs is provided in "Signs That Death Is Near."

"I remember in the early days my mom had a lot of depression, and I thought it was because of her cancer. But it wasn't - it was the drugs causing it. If I had known about that earlier, I could have dealt with it a lot better." — Debbie

General Tips for Meeting with the Health Care Team

If you are going with the patient to medical visits, here are some general tips for meeting with the health care team:

  • Make a list of questions before each appointment.
  • Take notes. Or ask the doctor if it's okay to use a tape recorder.
  • Get a phone number of someone to call with follow-up questions.
  • Keep a file or notebook of all the papers and test results. Make sure it's taken to medical visits.
  • Keep records or a diary of all the visits. List the drugs and tests your loved one has taken.
  • Keep a record of any upsetting symptoms or side effects. Note when and where they occur.
  • Find out what to do in an emergency. This includes who to call, how to reach them, and where to go.

Know Your Rights

People can refuse treatment at any time. In some states, doctors also have the right to stop aggressive treatment that they don't think is working. If your loved one will be in the hospital, make sure that her wishes for care are clear to you and to the hospital staff. You want the staff to know any measures she wants, or doesn't want, taken if her condition changes. Sometimes this information is not in a patient's chart.