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When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

Talking with Family and Friends

Talking with Your Loved One Who Has Advanced Cancer
Bringing Up Hard Topics
Talking with Children and Teens
Communicating with Your Partner with Cancer
Communicating with Other Family Members and Friends

"My brother doesn't want to make any decisions about his treatment. He has left it up to the rest of us and doesn't want to know anything. So we just sit down with the doctor and go over all the options and try to do the best we can." — Marcus

Talking about serious issues is never easy. It's hard to face an uncertain future and the potential death of your loved one. Often people are uncomfortable talking about it, or just don't know what to say. But you will need to talk to your loved one or others about a number of issues. These might include the seriousness of the cancer, preparing for the future, fears of death, or wishes at the end of life.

Some families talk openly about things. 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.

Talking with Your Loved One Who Has Advanced Cancer

It's likely that you and your loved one are both having the same thoughts and fears about the end of life. It's natural to want to protect each other. But talking about death does not cause someone to die. And keeping things to yourself doesn't make them live longer.

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 what's happening and the fact that the future is uncertain. And keeping the truth from each other isn't healthy. Avoiding important issues only makes them harder to deal with later. 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 them out in the open. Talking over your concerns can be very healing for all involved.

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 may be one of the most valuable things you can do. And 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. You can always ask whether he is willing to think about the issue and talk another time. He may even prefer to talk to someone else about the topic.

Bringing Up Hard Topics

"Ever since Audrey was diagnosed, we've danced around the subject. No one really wants to talk about the end. Now that her cancer has advanced, we really have no other choice. We have to discuss how she wishes to spend her final days. For our family, it's the hardest thing in the world to do." — Robert

Bringing up challenging subjects is draining. You may think, for example, that your loved one needs to try a different treatment or see a different doctor. Or she may be worrying about losing independence, being seen as weak, or being a burden to you.

What is important to remember is that your loved one has the right to choose how to live the rest of her life. Although you may have strong opinions about what she should do, the decision is hers to make. Here are some tips on how to bring up hard topics:

  • Practice what you'll say in advance.
  • Find a quiet time. Ask if it's an okay time to talk.
  • Be clear on what your aims are. What do you want as the result?
  • Speak from your heart.
  • Allow time for your loved one to talk. Listen and try not to interrupt.
  • Don't feel the need to settle things after one talk.
  • You don't always have to say, "It'll be okay."
"There was so much we wanted to say to John, but we didn't know how to find the words. So our friend who's a nurse helped us set up an evening with the whole family in John's room, and each of us told him how much we loved him. Having that time together with him meant so much to us all." — Kiesha

Some people won't start a conversation themselves, but may respond if you start first. Also, you can ask other caregivers how they have handled hard topics.

If you continue to have trouble talking about painful issues, ask for professional advice. A mental health expert may be able to help you explore issues that you don't feel you can yourselves. But if your loved one doesn't want to go, you can always make an appointment to 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*
When You Think You Want to Say:Try This Instead:
Dad, you are going to be just fine.Dad, are there some things that worry you?
Don't talk like that! You can beat this!It must be hard to come to terms with all this.
I can't see how anyone can help.We will be there for you always.
I just can't talk about this.I am feeling a little overwhelmed right now. Can we take this up later tonight?
What do the doctors know? You might live forever.Do you think the doctors are right? How does it seem to you?
Please don't give up. I need you here.I need you here. I will miss you terribly. But we will get through somehow.
There has to be something more to do.Let's be sure to get the best of medical treatments, but let's be together when we have done all we can.
Don't be glum. You'll get well.It must be hard. Can I just sit with you for a while?

* From Lynn, J. and J. Harrold. 2011. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press: New York, NY. Reprinted with permission.

Talking with Children and Teens

Children as young as 18 months begin to think about and understand the world around them. If someone close to them has advanced cancer, their world may be changing monthly, weekly, or daily. That's why it's important to be honest with them and prepare them each step of the way. Children need to be reassured that they will be taken care of no matter what happens.

Your own daily stresses and fears can affect how you act with your kids. You may be torn between wanting to give time to your kids, and knowing your loved one with cancer also needs your time. That's why it's good to let children know how you're feeling, as well as to find out how they're feeling. And never assume you know what your children are thinking. You can't predict how they will react to information, either. Experts say that telling children the truth about the cancer is better than leaving their imaginations free to worry about the worst.

Although it's a very hard chapter in a family's life, children can continue to grow and learn during this time. Dealing with cancer honestly and openly can teach them how to handle uncertainty for the rest of their lives. Making the most of the present is an important lesson for everyone

"This is the only childhood they will ever have, a crucial time of development. Choose to see your illness not as an obstacle but as a powerful platform from which your messages are amplified, helping your children understand and believe you and feel your love in a powerful way… When the facts are couched in love and hopefulness, you can guide your children toward a life-enhancing perception of reality." — Wendy Harpham, MD*

*Harpham, W. 2004. When a Parent Has Cancer: A Guide to Caring for Your Children. New York, NY; Harper Paperbacks. Adapted with permission.

Keeping the Lines of Communication Open

 Understand Your Children's Actions and Feelings

Children react to their loved one's cancer in many different ways. They may:

  • Seem confused, scared, angry, lonely, or overwhelmed
  • Feel scared or unsure how to act when they see the treatment's effects on the patient
  • Act clingy or miss all the attention they used to get
  • Feel responsible or guilty
  • Get angry if they're asked to do more chores around the house
  • Get into trouble at school and neglect their homework
  • Have trouble eating, sleeping, keeping up with schoolwork, or relating to friends
  • Be angry that someone else is taking care of them now

No matter how your children are reacting, it's usually easier to deal with their feelings before other problems appear. If they don't open up to you, they may prefer talking to someone outside the family, such as a trusted teacher or coach. If you notice changes or problems, you may want to ask for help from your pediatrician who knows your family already, the school counselor, a social worker or a child life specialist. Any of these may be able to suggest a mental health professional for your children if needed.

Other Behaviors

It's normal for some children to show signs of regression. They may begin acting younger than their years, resuming behaviors that they had stopped, such as babytalk or bedwetting. Or they may lose skills they had mastered recently. This is usually a sign of stress. Regression indicates that your children need more attention. It's a way for them to express their feelings and, in their own way, ask for support. Recognize that they are needier right now. Be patient as you work with them to get them back to their normal behavior. But don't hesitate to seek help from a social worker or other professional if you feel you need more advice or support.

 

Try to Ask Open-Ended Questions

For some families, talking about serious issues is very difficult. As challenging as it may be, not talking about it can be worse. Try to ask open-ended questions, instead of "yes" or "no" questions. Here are some ideas you might want to share with children of any age:

  • "No matter what happens, you will always be taken care of."
  • "Nothing you did caused the cancer. And there is nothing you can do to take it away either."
  • "People may act differently around you because they're worried about you or worried about all of us."
  • "You can ask me anything anytime."
  • "Are you okay talking with me about this? Or would you rather talk to Mrs. Jones at school?"
  • "It is okay to be upset, angry, scared, or sad about all this. You may feel lots of feelings throughout this time. You'll probably feel happy sometimes, too. It's okay to feel all those things."

Encourage Your Children to Share Their Feelings and Questions

Let children know they're not alone, and it's normal to have mixed emotions. Help them find ways to talk about their feelings. Young children may be able to show you how they're feeling by playing with dolls or drawing pictures. Other forms of art can help older children express themselves. Keep encouraging them to ask questions throughout caregiving. Keep in mind that young children may ask the same question over and over. This is normal, and you should calmly answer the question each time.

Find Moments to Connect

Come up with new ways to connect. Make a point of tucking them in at bedtime, eating together, reading to them, talking on the phone or by email. Talk to them while you fold clothes or do the dishes. Have a set time when your children do homework while you do something else in the same room. Or take a walk together. Going to the grocery store can even be "together time." Just 5 minutes alone with each child without interruptions can make a world of difference.

Find Others to Help Out

It may be very hard to give your children the time and energy that you normally would. But despite what's going on, they still need to follow a normal routine as much as possible. They need to bathe, eat, play, and spend time with others. Are your children close to another adult, such as a teacher, coach, or some other person? If so, maybe you can ask them to help you with your kids while you handle your extra responsibilities.

You can also call on your own close friends to help out with some tasks, such as cooking dinner or taking the kids out for a pizza. These may be people your kids know well and are comfortable being with. You could ask others who don't know them as well to help with smaller tasks, such as carpooling or bringing meals over.

Talking with Teens

Teens may ask very tough questions, or questions for which you don't have answers. They may ask the "what if" questions and what cancer means for the future. As always, keep being honest with them. Even more important, listen to what they have to say. As with adults, sometimes it's the listening that counts, not the words you speak to them.

Older children, especially teenagers, may feel uncomfortable sharing their feelings with you. They may try to ignore or avoid topics. Encourage them to talk with others. Also let them know that it's okay if they don't know what they're feeling right now. Many older children also find comfort in just spending time together, without talking about the situation. Hugs and letting your children know that you understand can help.

With teenagers, problems may be less obvious or more complicated than with younger children. Here are some things to keep in mind:

  • Teens are supposed to be starting to be more independent from their families. Cancer makes this harder to do, leading some teens to act out or withdraw.
  • Teens may give off the message of "leave me alone" when they still need and want your attention and support.
  • Being a teen under normal circumstances is stressful. Some moods you see may have nothing to do with the family illness.
  • Teens want to feel "normal." Make sure they have time for regular activities.
  • Keep the communication lines open and involve your teens in decisions as much as possible. Make sure they have a safe place to talk about what is going on in their life. If it's hard for you to be on top of their activities and feelings right now, involve another responsible adult to be closely connected with your teen.

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, your loved one, and perhaps other family members. However, children should have the choice about whether or not they want to go see the patient. If she is in a hospital or other facility, explain what the area and the room look like. Tell them who might be there and what they might see. Also explain gently if her 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 up or leave messages or songs on an answering machine. Encourage them to show love and support in any way they want.

Talking to Children About Death

"Even though I was only 5, my mom explained what was going on when my dad was dying. Now, ten years later, I realize how much it helped that she told me the truth."Kevin

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 the loved one's condition or don't tell the truth about it, you risk your children having difficulty trusting others when they grow up. By including children in the family crisis, you can guide your children toward healthy ways of coping with what is happening and help them prepare for their impending loss in healing ways.

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 that are worse than reality. Let them know that everything is being done to keep their loved one comfortable. Tell them that you will keep them updated. And provide opportunities for them to say goodbye.

In order to answer these difficult life questions, you need to know your own views on these subjects. What are you hoping for? What do you think will happen? You can show them 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. It shows them it's okay to talk about it. It can also be a time for them to be reminded that they won't be alone in their time of need. You will always be there for them.

Counselors and oncology social workers can help you handle these questions, too. They may know of local or national programs that offer help to children in these situations. Or they may suggest books, videos, and Web sites that explore these topics.

Communicating with Your Partner with Cancer

"I've noticed that my husband tries to stay really positive with everyone else, even his parents. He'll say he's doing great. This is frustrating for me because at home, I see that he isn't." — Emily

Some couples feel more comfortable talking about serious issues than others. Only you and your partner know how you feel about it.

Some things that cause stress for you and your partner can't be solved right now. But sometimes talking about them can be helpful. You may want to say something like this up front, "I know we can't solve this today. But I'd like to just talk some about how it's going and how we're feeling."

Topics to explore may include how each person:

  • Copes with change and the unknown
  • Feels about being a caregiver or being cared for
  • Handles changing roles in the relationship or home
  • Would like to be connected to one another
  • Sees what issues may be straining the relationship
  • Feels, or would like to feel, cared for and appreciated
  • Feels thankful for the other person

As your loved one becomes sicker, you may also want to share more practical issues. These may include which decisions you should share together, and which you should make alone. Along with this, you may want to talk about the different tasks you can each handle right now.

Find Ways to Say Thanks

Maybe your partner used to do a lot to keep your family going. And now, because he's sick, you're trying to get used to less help. It may be hard to notice the small things your partner is still doing to help out. There's often too much going on. But when you can, try to look for these things and thank your partner for doing them.

Often it doesn't take much to put a bright spot in your loved one's day. Bringing your partner a cool drink, giving him a card, or calling to check in can show him that you care. Showing a little gratitude can make both of you feel better.

Spend Time Together

Many couples find that it helps to plan special time together. Some days may be better than others, depending on how your partner feels. So you may need to be okay with last-minute changes. You don't have to be fancy. It's about spending time together. That can mean watching a movie, going out to eat, or looking through old photos. It can be whatever you both like to do. You also can plan occasions to include other people, if you miss that.

Find Ways to Be Intimate

You may find that your sex life with your partner is different than it used to be. Many things could be affecting it:

  • Your partner is tired, in pain, or uncomfortable.
  • You're tired.
  • Your relationship feels distant or strained.
  • You or your partner may not be comfortable with the way he or she looks.
  • You may be afraid of hurting your partner.
  • Your partner's treatment might be affecting his or her interest in sex or ability to perform.

You can still have an intimate relationship in spite of these issues. Intimacy isn't just physical. It also involves feelings. Here are some ways to keep your intimate relationship:

  • Talk about it. Choose a time when you both can talk. Focus on how you can renew your connection.
  • Try not to judge. If your partner isn't performing, try not to read meaning into it. Let your partner tell you what he or she needs.
  • Make space. Protect your time together. Turn off the phone and TV. If needed, find someone to take care of the kids for a few hours.
  • Reconnect. Plan an hour or so to be together without trying to have sex. For example, you may want to play special music or take a walk. Take it slow. This time is about reconnecting.
  • Try new touch. Cancer treatment or surgery can change your partner's body. Areas where touch used to feel good may now be numb or painful. For now, you can figure out together what kind of touch feels good, such as holding, hugging, and cuddling.

Communication Troubles

Studies show that open and caring comunication works best. Yet often caregivers run into:

  • Tension from different ways of communicating
  • Lack of sensitivity or understanding about appropriate ways to talk and share feelings
  • People who don't know what to say, won't communicate at all, or won't be honest

Communicating with Other Family Members and Friends

Any problems your family may have had before the cancer diagnosis are likely to be more intense now. This is true whether you are caring for a young child, an adult child, a parent, or a spouse. Your caregiver role can often trigger feelings and role changes that affect your family in ways you never expected. And relatives you don't know very well or who live far away may be present more often, which may complicate things.

It's very common for families to argue over a number of things at this time. These might include:

  • Treatment options for their loved on,e or whether to continue treatment at all
  • When to use hospice care
  • What treatment the patient desires
  • Feelings that some family members help more than others

While everyone may be trying to do what's best for your loved one, some family members may disagree as to what this means. Everyone brings their own set of beliefs and values to the table, which makes these decisions hard. It is often during these times that families ask their health care team to hold a family meeting.

"My sisters keep hoping for the magic bullet. I don't know how to get them to understand how serious things are." — Verdell

Family Meetings

Family meetings are necessary throughout cancer care. They become even more important as cancer progresses. In a family meeting, the health care team and family meet to discuss care. You can ask a social worker or counselor to be there if needed. Talk with your loved one to see if he wants a family meeting. Ask if he would like to be involved. Meetings can be used to:

  • Have the health care team explain the overall goals for care
  • Let the family state their wishes for care
  • Give everyone an open forum in which to express their feelings
  • Clarify caregiving tasks

If you need to, bring a list of issues to discuss. At the end of the meeting, ask the health care team to summarize decisions and plan next steps.

How to Communicate when Support Isn't Useful

"My mother came by and commented on how much television the kids were watching. She made some remark about how she knew I was stressed, but  couldn't I find something better for them to do? I told her I've got a lot on my mind and needed her understanding right now." — Carrie

Sometimes, people are eager to help you because they want to feel useful. But at times you may not need the support, or  you may simply want to spend time alone with your sick loved one.

If people offer help that you don't need or want, thank them for their concern. Let them know that right now you have things under control, but you'll contact them if you need anything. You can tell them that it always helps to send cards, letters, and emails. Or they can pray or send good thoughts.

Sometimes people offer unwanted advice on parenting, medical care, or any number of issues. It can be unpleasant to hear such comments. For example, some caregivers have shared:

  • "We have a problem with a member of my husband's family. She doesn't live here and keeps questioning all our decisions. It's gotten so bad that we've had our doctor explain to her that she's not here all day, and, therefore, doesn't understand the situation. She has been a real pain."
  • "I feel like people really want him to do the treatment they are suggesting, rather than what we feel is best. It's making this harder than it needs to be."

People often offer unwanted advice because they aren't sure what else they can do. They may feel helpless to do anything, yet want to show their concern. While it may come from a good place, it can still seem judgmental to you.

It's your decision on how to deal with these opinions. You don't have to respond at all if you don't want to. If someone has concerns about your kids that seem valid, talk to a counselor or teacher about what steps to take. Or if the concerns are about your loved one, you can talk to the medical team. Otherwise, thank them. And reassure them that you are taking the necessary steps to get your children through this tough time.