Planning for the Caregiver
Asking about Changes That May Occur
No one told us what these pills would do. My partner started to have mood swings and get really angry at me for no reason. Her nurse told me later that this was common when taking these drugs, but how was I supposed to know that?
Sometimes, as the disease progresses, changes 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 sooner about what changes to expect.
Changes may occur in:
- Personality or mood
- 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 and what you can do about them if they happen.
Looking at Living Arrangements
Sometimes questions arise about whether the person with advanced cancer should live at home or be moved to a nursing or assisted living facility. When making these decisions, here are a few good questions to ask:
- What kind of help does your loved one need?
- If you’re the spouse or other loved one living with her, are you capable of taking care of her?
- If she lives alone, is it risky for her to keep doing so?
- What are the options for home care?
- How often will she need help?
You’ll also need to consider how your loved one feels. She may fear:
- Losing her independence
- Being seen as weak or a burden to others
- Moving to a health care of other type of assisted living facility
Sometimes it's easier to consider a change in living arrangements when the advice comes from a health professional. Social workers, including visiting nurses, those who work with older adults, and others may be able to help you talk to your loved one about these decisions.
Talking to Your Loved One with Advanced Cancer
Whether it’s a spouse, family member, or friend, talking about serious issues is never easy. It’s normal to not know what to say to someone with advanced cancer, or to worry that you’ll say the wrong thing. But the most important thing is not what you say, but that you are showing you care. This section offers advice on how to talk about advanced cancer. Your loved one with cancer may want to go to our patient section for tips as well.
It’s likely that you and your loved one with cancer are both having the same thoughts and fears about the end of life. There will come a time when you will need to talk about these issues together. These might include the stage of the cancer, preparing for the future, fears of death, or wishes at the end of life. Some families talk openly about these sorts of things, while others don’t. There is no right or wrong way to communicate. But studies show that families who talk things out feel better about the care they get and the decisions they make. A few things to remember are:
- You and your loved one can still have hope for longer life or an unexpected recovery. But it’s also a good idea to talk about the fact that the future is uncertain. Avoiding important issues only makes them harder to deal with later. Talking over your concerns can bring comfort to all involved.
- Keeping the truth from each other isn’t healthy. You may find that you both are thinking the same things. Or you may find you’re thinking very different things. This makes it all the more important to get any thoughts or concerns you have out in the open.
- Often the best way to communicate with someone is to just listen. This is one of the main ways of showing that you’re there for them. It’s important to be supportive of whatever your loved one wants to say. It’s his life and his cancer. He needs to process his thoughts and fears in his own time and his own way.
If you have trouble talking about painful issues, ask for professional advice. A mental health expert may be able to help you and your loved one explore topics that you don’t feel able to on your own. And if the cancer patient doesn’t want to go, you can always go alone. You may hear some ideas for how to bring up these topics. You can also talk about other concerns and feelings that you are dealing with right now.
Words to Try with Someone with Advanced Cancer
Instead of: Dad, you are going to be just fine.
Try: Dad, are there some things that worry you?
Instead of: Don’t talk like that! You can beat this!
Try: It must be hard to come to terms with all of this.
Instead of: I can’t see how anyone can help anymore.
Try: We will be there for you always.
Instead of: What do the doctors know? You might live forever.
Try: Do you think the doctors are right? How does it seem to you?
Instead of: Please don’t give up. I need you here.
Try: I will miss you terribly. But we will get through somehow.
Instead of: There has to be something more to try.
Try: Let’s be sure to get the best of medical treatments, but we will be together when we have done all we can.
Instead of: Don’t be glum. You’ll get well.
Try: It must be hard. Can I just sit with you for a while?
From Lynna J., J. Harrold, and J.L. Schuster. 2011. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press: New York, NY. Reprinted with permission.
Understanding Your Loved One's Wishes for Care
An advanced cancer diagnosis brings up a number of decisions to make. These may be about what type of care or treatment to receive. Or they may be about what kind of information patients want to hear. For many families, it's important that the person with cancer be in charge of making decisions. But in some families and also in some cultures, it's common for family caregivers to make most of the decisions. And they may make them with or without the patient knowing. Or, sometimes the patient wants the caregiver to make all the decisions. Making these decisions may be hard on you for a number of reasons including:
- Your own desires for your loved one’s care may make it hard to decide what is best for him.
- Your ideas about how to move forward may differ from those of other family members and friends.
- The patient may have different beliefs about care than you or other loved ones.
- The opinions of your health care team may differ from the patient’s or yours.
If you and your loved one with advanced cancer have different opinions about next steps for care, you should share your opinions. However, in the end, it's the patient's choice. If you can't agree, you may want to ask someone else to guide the conversation between you both. You might talk to a member of your faith community, a social worker, other people dealing with cancer, or a hospice worker.
There may also come a time when you have to make decisions for your loved one because he can't anymore. It's important to get a sense of how he feels about certain issues while he can still tell you. For example, would he like you to be in charge of his medical decisions? Has he signed advance directives to let you know what kind of care he would like to receive?
Knowing what your loved one wants may mean letting go of some of your own opinions. For example, you may want to keep him alive, whatever it takes. But he may wish to stop receiving life-sustaining measures at a certain point. Try to keep things in perspective by looking at how the disease has advanced. Get the facts about the care you want him to keep receiving.
If advance directives can’t be found and your loved one can’t speak for himself, you may feel anxious and stressed as you decide what choices to make for his care. Think about what he would want or imagine what he would say if he could talk. Try to remember if he said something in the past that would help you decide.
Know that it’s common for family members to disagree on what kind of care to give your loved one. If this is the case for you, ask a member of your health care team to hold a family meeting and lead a discussion. They can explain the goals of the medical care being offered. For example, is it to stop the cancer? Lessen pain? Prolong life? Having this talk with everyone present may lessen the conflicts and help the family reach a decision for your loved one.
Ever since Mark was diagnosed, we’ve danced around the subject. But now that his cancer has advanced, we really have no other choice. We have to talk about next steps and what he wants to do.
Talking to Children about Death
Children of all ages may wonder about dying, life after death, and what happens to the body. It's important to answer all their questions. If not, they may imagine things or make up their own stories. Let them know that everything is being done to keep their loved one comfortable. Tell them that you will keep them updated.
Tell the truth. Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves them unprepared for the loved one's death and can prolong the grief they will feel. And if you don't talk about your loved one's condition or don't tell the truth about it, your children may have a hard time trusting others in the future. By including children in the family crisis, you can guide them toward healthy ways of coping with what is happening. You can help them prepare for their impending loss in healing ways, such as providing opportunities for them to say goodbye.
Know your own views. To answer complicated questions from your kids about the potential death of your loved one, you need to know your own views on the subjects, including:
- What are you hoping for?
- What do you think will happen?
You can show children how to hope for the best while accepting the likely outcome of death. If you're honest and up front, you are teaching them that death is a natural part of life. Your honesty shows them it’s okay to talk about death. You can also them that they won't be alone in their time of need. You will always be there for them.
Counselors and oncology social workers can also suggest ways to talk to kids about death in ways they understand. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and websites that explore these topics.
Preparing Children for Visits
If your children don't live with the person who has cancer, it's helpful to prepare them before they visit. The decision of whether or not to let them visit is up to you, the patient, and perhaps other family members. However, children should also have a choice about whether or not they want to visit. If your loved one is in a hospital or other facility, explain what the area and the room will look like. Tell them who might be there and what they might see. Also explain gently if their loved one’s physical condition or personality has changed.
For a younger child, you might say something like this:
- "Grandma is very sick. When you see her, she will be in bed. She may not have a lot of energy to play with you or talk to you as much. She may look a little different too."
- "Mom may be sleeping while you're there. Or she may be awake but won't talk because she's resting. But she'll know and be happy that you're there. She loves you!"
- "Don't worry if you're visiting Uncle Bill and he says things that don't make sense. Sometimes the medicine he takes makes him do that. If it happens, we can tell his doctor about it to make sure he's okay."
Sometimes children don't want to visit, or can't for other reasons. In that case, there are other ways of showing they care. They can write a letter or do artwork. They can call the patient or leave messages or songs on an answering machine. Encourage them to show love and support in any way they choose.
Signs That Death Is Near
Certain signs and symptoms can help a caregiver know when death is near. It's important to know that not every patient has all of these signs or symptoms. Also, even if any of them are present, it doesn't always mean that your loved one is close to death. A member of the patient's health care team can give you more guidance about what to expect.
- Drowsiness and sleeping more
As your loved one nears the end of life, he will be sleeping more and may not respond as often to you. Plan visits for times when your loved one is alert.
- Confusion about time, place, or identity of friends and family members
Your loved one may also seem restless, or have visions of people and places that are not present. Or she may see, hear, and talk to loved ones who have died. She also may pull at bed linens or clothing. Try to be calm and reassuring. These visions should not be treated as hallucinations. You don't need to convince her that what she sees isn’t real.
- Being more withdrawn and unresponsive
Most patients are still able to hear after they're no longer able to speak. Don't try to arouse or shake your loved one if he doesn't respond. Speak to him directly and let him know you are there for him. He may be aware and able to hear, but unable to respond. Some experts say that giving the patient permission to "let go" can be helpful.
- Less need for food and liquids, and loss of appetite
Allow your loved one to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if she can swallow. Lip balm may help to keep the mouth and lips moist.
- Loss of bladder or bowel control
Keep your loved one clean, dry, and as comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.
- Dark urine or decreased amount of urine
The health care or hospice team may see a need for a catheter to help the patient urinate. However this would not be necessary in the final hours of life.
- Skin becomes cool to the touch or bluish in color
Use blankets to warm your loved one. Avoid warming with electric blankets or heating pads, which can cause burns. Take comfort knowing that even though the skin may be cool, the patient is probably not aware of feeling cold.
- Rattling or gurgling sounds while breathing
These may seem loud or may seem irregular and shallow. Your loved one may also breathe fast and then slow. Turning his body to the side and placing pillows under the head and behind the back may help. Although this kind of breathing may seem scary to you, it doesn't cause discomfort to your loved one. An extra source of oxygen, ice chips, or a cool mist humidifier may help make the patient more comfortable.
- Turning the head toward a light source
Leave soft, indirect lights on in the room.
- Pain becomes hard to control
It's important to keep providing the pain medicines as the doctor has prescribed. You should contact the doctor if the current dose doesn't seem to help. With the help of the health care team, you can also look into other methods to help with pain such as massage and relaxation.