- Who are caregivers, and what do they do?
- Understanding the health care system
- Making health decisions
- Long-distance caregiving
- The treatment timeline
- Organizing medical treatment and paperwork
- Taking care of yourself
- Asking for help
- Job, insurance, and money concerns
- Legal issues
- To learn more about caregiving and coping
Making health decisions
The health care team will always discuss major health decisions with a patient if the patient can think clearly and share their thoughts. And the patient’s decisions about their own health will be followed when their decisions do not create safety issues.
Sometimes, what the patient wants is not what others want or will do for them. When patients need help carrying out their wishes, it can be hard on those who want something different from what the patient wants.
What if we can’t agree on something important?
It’s good to know that you and the patient don’t always have to agree. Some of the decisions and problems that come with a cancer diagnosis can be very tough and very emotional. Remember to let the person with cancer make decisions about his or her care whenever possible. There are some things you can do to help them make the best choice:
- Explain your needs and wants clearly and let the patient to do the same. As an example, you may need to do this when deciding whether to give certain treatments, such as IV antibiotics, at home or in an infusion center. The patient may want to do this at home, but will need your help. You might need to say “This is too scary for me. I don’t think I can do this at home, but I can make sure you’re at the clinic every day.” Look for common ground: you both want the patient to get the best possible care, which includes antibiotics, but you feel strongly that you cannot safely give IV drugs at home.
- Offer choices or a time limit when decisions need to be made. A change in medicines is a good example. “Let’s try this sleeping pill for a few nights and see if it helps you get some rest. If not, we’ll talk to Dr. Smith about trying something else.”
- Focus your energy and influence on the issues that are important. Let the patient make as many choices as possible. For example, arguing over what clothes to wear probably isn’t the best use of anyone’s energy. But not taking medicines or not following activity restrictions may be issues that you can’t ignore. If reasoning with the patient doesn’t work, explain that you will talk to the medical team and get their help – then do it.
Again, open communication with the person you are caring for is the most important part of your role. Speak up for the patient and his or her needs. Help the patient get needed information. Get input from other team members, then offer your support and encouragement.
When do I call the doctor?
Sometimes it’s hard to know if something is “bad enough” to call the doctor after hours or in the middle of the night. The best way to know when to call is to ask. Ask the doctor or nurse what problems you should call about right away, no matter what time it is. This may be a fever or new pain, or some other problem. You can also ask what can wait until the next day or the next appointment.
Also be sure you know whom to call after hours, on weekends, and on holidays. If you do not have 24-hour access to someone on the medical team, find out what you should do if there are problems. Should you call your pharmacist if there are problems with the medicines? Should you go to the ER? It often seems like problems come up when the doctor’s office is closed, so be sure you have an emergency plan in place.
You can find more details on dealing with symptoms and when to call the doctor in our booklet, Caring for the Cancer Patient at Home: A Guide for Patients and Families. You can read it online at www.cancer.org or call us for a copy.
How do I know what the patient wants?
Everyday choices are easier to make if you understand the patient’s preferences, habits, and values. What’s most important in the patient’s life? Everyday choices include deciding what to wear, when to bathe or eat, and what else to do after that. But when you’re dealing with cancer even these simple choices can be overwhelming and hard to make. Sometimes a small crisis can make the patient unable to express what she or he wants or needs. As much as possible, honor the patient’s wishes, but be realistic about the limits on what you and other caregivers can do, as discussed above.
What if the patient won’t do things for himself or herself?
This can be frustrating for a caregiver. You feel sure that the patient can do some things for themselves, but you do all of them because the patient won’t. Sometimes there are medical or emotional causes for the problem, such as severe tiredness (fatigue) or clinical depression. If you’re not sure, get the patient to the doctor and state the problem clearly. The medical team can help you figure out what may be going on.
It’s not always needed and may seem hard to do, but sometimes you might have to set limits. For example:
- Try to figure out what self-care tasks the patient can safely do, such as bathing, dressing, and going to the bathroom. If you don’t know what the patient can do, get the medical team to evaluate the patient. Social workers and occupational health professionals may be able to help with this.
- Encourage the patient to do self-care as much as possible.
- Encourage the patient to talk about things they enjoy so the conversation isn’t always about cancer and illness.
- Let the patient make as many personal choices as they can. If they are overwhelmed with decisions, give them simpler choices by saying, “Would you prefer chicken or fish for dinner?” or “Would you rather wear your blue pants or the brown ones?”
- Get others involved if the patient is avoiding treatments or doing things that can cause harm. Family members can be a strong source of influence. Rally them for support.
- Once a decision is made, accept it and move on. And if you disagree with the decision that was made about the patient’s treatment, remember that it’s the patient’s decision to make. Congratulate them for being able to make a decision.
Remember that professional help is available to you. It’s normal to feel frustrated, upset, and stressed when caring for someone with cancer. Use the resources and services of the health care team when you need them. They can help you find the support you need, such as mental health counselors, home care services, or financial assistance, so that both you and the patient can have the help you need.
What if there’s abuse in the family?
A diagnosis of cancer can worsen abusive behaviors in families that are already strained. The crisis of a cancer diagnosis can take a toll on both the caregiver and the patient. Taking care of yourself and getting the support you need can help you be a good, effective caregiver.
Patients are more commonly seen as victims of abuse, but what if the patient is the abuser? Again, the stresses of cancer may make your relationship more difficult. If abusive behavior starts after cancer treatment, the doctor should check to see if there are medical reasons for it. Don’t accept abuse just because the patient is sick.
There may be times of misunderstanding, tension, hurt, and anger – but not all the time. Emotions need to be expressed and accepted. Patients and caregivers should treat each other with respect, and should not fear emotional, verbal, physical, or sexual abuse. Talk to someone on the health care team if you need help.
Does the patient need to be moved or relocated?
Open and honest discussion with the patient and other family members is the first step in deciding whether the patient needs to live somewhere else for a time. Cancer and its treatment can cause confusion and forgetfulness, and may worsen the symptoms of other conditions such as dementia. Patients can endanger themselves by forgetting medicines, not eating, leaving the house, or losing track while cooking. Patients can be a danger to themselves and others if they start to hit, bite, or throw things at caregivers or family members. Homes are rarely set up to deal with these kinds of problems. In such cases, the cancer care team needs to know about these behaviors. The patient may need to be hospitalized, if whatever is causing the problem can be treated.
For less severe problems, such as mild forgetfulness, unsteady walking, and occasional minor confusion, there may be other options. Again, tell the cancer care team about these problems to find out if there is a medical reason for them and if treatment is needed.
Sometimes the less severe problems can be managed at home if someone can stay with the patient at all times. But these problems deserve special discussion by the family. Otherwise, other family members might assume that the caregiver will be the one to stay home and provide 24-hour care for the patient.
Family meetings with the patient, spouse, children, siblings, and other key people can allow everyone to share their thoughts and can help you decide what to do. Sometimes these talks can be very difficult and emotional, but certain topics will need to be covered.
- The amount or type of care needed. For instance, does the patient need 24-hour supervision? What can she or he safely do without help?
- What other living arrangements are available? Can the patient move in with another family member? An apartment closer to the primary caregiver? A smaller house? An independent retirement community?
This discussion can be tricky if the patient gets confused or fearful at times. It helps to have the doctor’s or occupational therapist’s (OT) assessment of the patient’s needs. For example, if their professional opinion is that the patient cannot be alone at all, and the only caregiver has to work full time to make the house payment, something else must be done. An occupational therapist’s assessment can also tell you if the patient can be kept safely in the home if certain modifications are made. Ask your doctor about a referral to OT. This may be easier if the patient is in a hospital or extended care facility. Ask the doctor or nurse about getting an OT evaluation before the patient leaves.
Is a nursing home or extended care an option?
There may come a time when your loved one needs extended care or nursing home care. Even though you might not be with the person all day, you’ll still find that you are a caregiver. It just may look different, since you are no longer providing all of the hands-on care. But you will still be talking with the staff at the facility, visiting the patient, and staying in touch with those who are providing care.
You’ll also be the first one called if there are problems. Your caregiving experience will help you deal with the situations that may come up. You also will know who to call if more help is needed.
What if the patient refuses to leave home?
Sometimes the person with cancer decides they don’t want to live elsewhere. He or she may resist leaving home. It’s a very emotional thing to leave home, even if it’s only for a short time, and emotions are already high. Patients may feel that they’ll no longer be able to set the rules or control their own lives, or they may be afraid of losing their independence. Maybe they don’t want to feel they are a burden on others. And if they have lived in the same place for a long time, they probably have strong ties to the community, family, friends, and health care providers, as well as social lives and daily routines.
In some cases you have to be firm, especially if the present situation is unhealthy or unsafe. If you have to act against the wishes of the person with cancer, be direct and explain what you’re going to do. In other cases, there’s room to negotiate. All of you, the patient, the family, and you, the caregiver, will need to be sure you have covered all options.
You’ll also need to talk about each person’s concerns. For instance, things like patient safety, convenience, finances, and the care needed should be discussed. Clear plans must be outlined. It helps to check out the physical setting and set up a timeline of patient needs. For instance, are there just certain times during treatment when someone needs to be with the patient? Where will the patient sleep? How about getting up and down the steps inside or outside the house?
If this still isn’t working, a social worker may be helpful in exploring options and setting plans in motion. It may also help to have a family meeting with at least some members of the health care team so that you can get their input and support.
What do I do when the patient won’t share information with me?
It’s normal to want to protect the people you love and care about. But sometimes this can become a problem. For instance, if the person with cancer is having certain symptoms or worsening symptoms that they don’t tell you or the doctor about.
Try to understand the patient’s reasons for withholding information. Is the patient normally a very private person? Is she or he trying to protect you or other loved ones? Is the patient scared and trying to deny what’s happening?
You may want to start gently – keep in mind that the patient is probably already distressed. Sit down with the patient. Ask if there’s something that the patient would like to tell you. If the answer is no, ask if there’s something the patient doesn’t want to tell you. Give him or her a moment to consider it. Point out that you’ve noticed signs of a new problem or worsening symptoms. Remind him or her 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 the patient and you. If you’re having trouble handling it, say so; and share any concerns about needing help with it. If the problem is affecting others as well, say so.
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.
You can’t give the best care unless you know what’s going on and how to handle it.
Last Medical Review: 03/05/2014
Last Revised: 04/28/2014