Thursday, February 23, 2017

Ever Care, Never Quit

Tips for talking to someone with cancer

  • Don't ignore them. Some people disappear when someone they know gets cancer. The worst thing you can do is avoid the person because you don’t know how to handle it. Cancer can be lonely and isolating as it is. Tell them "I'm here for you," or "I love you and we'll get through this together." It's even okay to say "I don't know what to say" or send a note that says "I'm thinking of you." Just stay connected.
  • Think before you speak. Your words and actions can be powerful. One comment can instantly undo someone's positive mood. Don't be overly grave and mournful. Avoid clichés, like "hero" and "battle." If the person gets worse, does it mean they didn't fight hard enough? Try to imagine if you were in their shoes. What you would want someone to say to you?
  • Follow their lead. Let the person with cancer set the tone about what they want to talk about. It doesn't always have to be about cancer. Chances are they want to feel as normal as possible. Tell them about something funny that happened. When they want to talk about cancer, let them. And save the pity eyes and voice.
  • Keep it about them, not you. Don't lose your focus on the person with cancer. Avoid talking about your headache, backache, etc. This isn't about you. And as bad as you feel, they feel worse. They aren't interested in hearing about how hard this has been on your life. Don't put them in the position of having to comfort you. Only ask questions if you truly want to hear the response.
  • Just listen. Sometimes just being there to listen—really listen— is the best thing you can do. Let the person with cancer talk without interrupting them. You don't always have to have all the answers, just a sympathetic ear. They may not want to talk at all, and would rather sit quietly. It's okay to sit in silence.
  • Don't minimize their experience. Try not to say "Don't worry, you'll be fine." You don't know that. Instead say "I'm really sorry" or "I hope it will be okay." And don't refer to their cancer as "the good cancer." These statements downplay what they're going through. Leave the door to communication open so they can talk about their fears and concerns.
  • Don't be intrusive. Don't ask the person with cancer questions about their numbers or tumor markers. If they want to talk about their blood results, they will. Give them the freedom to offer this information or not. Also, don’t ask personal questions that you wouldn't have asked before, especially when it comes to subjects like sex and religion.
  • Don't preach to them. Don't try to tell the person with cancer what to think, feel or how to act. You don't know what they're going through, so don't act like you do. Instead of saying "I know how you feel," try saying "I care about you and want to help." Don't suggest alternative forms of treatment, a healthier lifestyle, etc. And don't tell them to "stay positive," it will only cause frustration and guilt.
  • Refrain from physical assessments. Refrain from comments about how the person with cancer looks, particularly if it's negative. They don't need their weight loss or hair loss pointed out to them. And if they just started treatment, don't ask them about potential side effects. If you say anything at all, tell them they look stronger or more beautiful, but mean what you say.
  • Avoid comparisons. Everyone does cancer their own way. Don't bring up the private medical problems of other people you know. And don't talk about your friend with cancer who is running marathons or never missed a day of work. Avoid talking about the odds or making assumptions about their prognosis. Just allow them to be themselves.
  • Show them you care. Show the person with cancer that they’re still needed and loved. Give them a hug. Surprise them with a smoothie, books, magazines, or music. Offer to help, such as cooking, laundry, babysitting or running errands. Be specific by asking “What day can I bring you dinner?” And, offer to help only if you intend to follow through with it and won’t expect something in return.
  • Share encouraging stories. Offer encouragement through success stories of long-term cancer survivors. Avoid saying “They had the same thing as you.” No two cancers are the same. And never ever tell stories with unhappy endings. If you know someone with the same type of cancer, offer to connect them.

Tips for caring for a loved one with cancer

  • Educate yourself. Learn as much as possible about your loved one’s cancer type, treatment options and potential side effects. Ask your loved one’s doctor about patient education materials and supportive resources. The more you know about the disease and what to expect, the more confident you and your loved one will feel about treatment decisions.
  • Find the right cancer team. Find doctors that specialize in your loved one's form of cancer and who work as a team to provide individualized care. An integrated approach is also important to help your loved one manage side effects during treatment. Also, having your loved one’s doctors in the same location provides greater convenience and more streamlined care.
  • Stay organized. Keep a record of your loved one's medical history, test results and medications. Also, write down appointments, names of physicians and contact information, including the pharmacy number. It also helps to make a list of your daily responsibilities and prioritize what needs to be done.
  • Keep your loved one's doctors informed. Keep your loved one’s doctors informed about any new symptoms they exhibit, such as changes in sleep, mood, bowel habits, or appetite. These side effects can interrupt their treatment and hinder their quality of life. Don't wait for the next appointment to contact your loved one's doctors about an important issue.
  • Follow your loved one's lead. Don't tell your loved one what to think, feel or how to act. Since you don’t know what your loved one is going through right now, let them take the lead. Instead of saying things like "I know how you feel," try saying "I love you and we'll get through this together."
  • Listen to your loved one. Sometimes just being there to listen, without judgment, is the best thing you can do. You don't always have to have all the answers or fix things, just lend a sympathetic ear. Your loved one may not want to talk at all, and would rather sit quietly. It's okay to sit in silence.
  • Respect your loved one's independence. Your loved one probably wants to feel as independent and in control as possible right now. Allow your loved one to decide what they can and will do. Encourage them to be as self-sufficient as they want to be. Provide choices whenever possible.
  • Accept your loved one's bad days. At times, your loved one may be depressed, angry or just having a bad day. It's unrealistic to expect your loved one to "stay positive" all the time. And, putting these demands on them will only cause more frustration, guilt and stress. Accept the bad days, give your loved one space if they need it, and try not to take things personally.
  • Communicate with your loved one. Cancer can put a strain on your relationship with your loved one. It's important to maintain open communication, even if it brings up strong emotions. Don't assume your loved one can't handle an honest discussion. Try to understand your loved one's point of view and communicate yours.
  • Take a break from cancer. It doesn't always have to be about cancer. You and your loved one may need a break from cancer every once in a while. Try not to bring up the subject unless your loved one wants to talk about it. Instead, focus on other things, like spending time together doing something fun.
  • Remind your loved one that you care. Your loved one may need extra reassurance that they are still needed and loved. Find gifts that reflect who they are apart from cancer (e.g., books, art, music, tickets to an event). Let your loved one know that you still see them as a person, not as a cancer patient.
  • Find other sources of support for your loved one. While you may be a wonderful emotional support for your loved one, sometimes it helps to have another, outside, source where they can express their feelings. Ask your loved one if they would like to join a support group or speak to a professional counselor or spiritual advisor.

Tips for managing the challenges of caregiving

  • Grieve your losses. It's normal to miss the life you and your loved one had before cancer. You may need some time to grieve your losses. Yet, try not to get caught up in focusing on the past and why this is happening to you. Instead, think about what you can do now. Take it one day at a time, understanding there will be both good and bad days.
  • Go easy on yourself. Caregivers often feel the need to do everything right. When you make mistakes, you may feel like you could have done something better. You may also feel guilty about being healthy. Try to let go of the guilt and don't be too hard on yourself. Most of all, recognize that protecting your own health is essential to being a good caregiver.
  • Put family conflict aside. Sometimes hard feelings develop if one caregiver feels they are doing all the work and other family members aren’t chipping in. Everyone reacts differently in this type of situation. Try to be patient with other family members; they are probably doing the best they can do. Don’t try to solve any underlying issues/conflicts while your loved one is struggling to get better. Try to focus on what is most important at this time.
  • Prioritize responsibilities. It helps to make a list of daily tasks and prioritize what needs to be done. Space out your activities with short rest periods, and postpone small jobs. Also, you don’t have to take over all of your loved one's responsibilities. Your loved one probably wants to feel as independent and in control as possible right now. Try to encourage them to be as self-sufficient as they want to be.
  • Make time for yourself. Caregiving can sometimes be confining and a little lonely. You don't have to feel guilty about needing some time for yourself. Your loved one may need the space too. Start out with small increments of time to yourself each day. Take a walk, watch a movie, call a friend, read a book, get a massage, take a warm bath, or listen to music. Even if it's just for a few minutes, doing something you enjoy can help you feel refreshed.
  • Monitor your own health. Your health is just as important as your loved one’s is. Don’t ignore physical and emotional symptoms, such as loss of appetite, difficulty sleeping, or difficulty concentrating. Stay on top of your doctor's appointments and any medications you are taking. Make sure to get enough sleep, exercise regularly and eat well, all which can minimize irritability and fatigue. Also, try mind-body techniques, such as relaxation or deep breathing, to reduce stress.
  • Keep a journal. Many caregivers feel more emotional than usual as they try to cope with a loved one’s cancer. You may feel angry with the cancer itself, the situation, yourself, your loved one, other family members, doctors, etc. These feelings are all normal. It can help to keep a journal or write a letter to release your thoughts and feelings so you can better manage them.
  • Try not to take things personally. At times, your loved one may take some of their anger and frustration out on you. Try to remember that they are going through a difficult time, and are probably scared and confused. You may resent having to be the one who admonishes them when they stray too far from their diet and the one who nudges them to do their exercises. Know they appreciate everything you do, even if they don’t say it all the time.
  • Know your limitations. It's common for caregivers to feel that they aren't doing enough to help. Try not to take on more than you can handle. You may be struggling to balance your caregiving duties with your full time job and other responsibilities. Look into the family medical leave policies at your workplace. Consult with your loved one's doctor to determine if/when professional nursing services may be needed.
  • Accept help. Some caregivers think they are the only person who can do the job. Don't be afraid to share the responsibility with others. When people offer to help, be specific about what you need done, such as cooking, cleaning, shopping, laundry, yard work, etc. If you need financial advice and assistance, contact your hospital social worker. Also, some websites provide calendars and other tools for coordinating help from others.
  • Stay connected. Staying connected with others can help you feel less alone and provide a much-needed emotional outlet. Share your feelings and concerns with family and friends. Join a caregiver support group, where you can talk about your experiences and trade advice. Online social networks can help you feel connected with others without having to leave home. You may also consider speaking with a professional counselor or spiritual leader.
  • Spend time together. Take some time away from cancer-related business to do something fun with your loved one. When you're together, tell your loved one what they mean to you. Not only is it important for your loved one to hear, but it will make you feel better too. Remember that being able to spend time together is a gift.

Tips for talking with children about cancer

  • Think before you talk. It is important to think through what you're going to say and how you will say it ahead of time. The more calm and composed you are, the less scared they will be. It may help to write down your most important points so you remember what you want to say and you can focus solely on your child. It may also help to review what you are going to say with another adult first, or consult books with suggestions for talking to children about cancer.
  • Pick your time carefully. Ideally, talk to your children as soon as possible after you are diagnosed. Plan the conversation with plenty of time to avoid unnecessary interruptions. Try not to begin the discussion when you are feeling tired or discouraged. Likewise, wait until your children are well rested. Don't be surprised if your conversation is very brief or if you don’t notice an immediate reaction from your child.
  • Choose who will talk. As a parent, it is usually best for you to tell your children the news. This is a very difficult thing to do and there is no easy way of saying it. It is okay to get mildly upset or cry. Seeing you cry gives your children permission to cry too. If you don't think you are able to break the news to your children, you may consider asking your spouse or close family member to lead the conversation.
  • Find a good place. Try to create an environment in which your children feel safe and able to ask questions. There may be particular places where your children may be more likely to discuss things with you. While bedtime may usually be a good time to talk, you may not want to start a difficult conversation right before your child needs to go to sleep. Wherever you choose to talk, make sure you spend enough time with your children so they feel supported.
  • Keep it simple. Keep the discussion simple and straightforward and use words your children can understand. Use basic information to explain your illness and answer only what they ask. Explain how their life and the daily routine will be affected. Give them a small amount of information at a time. Ask them if they have heard any words that they don't understand. Remember there is no perfect way to have this conversation, so do your best.
  • Remember their age. What you say and how you say it depends upon your child's age and maturity level. There are numerous age-appropriate videos and books about cancer that you can review with your children, or they can read themselves. Try not to talk beyond their attention span or level of understanding. With younger children, it may help to use role-play, picture books, dolls, or stuffed animals. Older children and teenagers may want more detailed information about the disease and its treatment.
  • Be prepared to answer difficult questions. Try to anticipate the questions your children will ask and how you will respond to them. Remember that you won't have all the answers. It's okay to say "I don't know but I'll try to find the answer for both of us." Your children may ask, "Are you going to die?" This is a very difficult question. Give your children the most hopeful, optimistic outlook you can justify. Provide assurance that you will always try to be honest with them about what's going on.
  • Allow time for your child to absorb the news. Children, especially young children, can only handle bits of information at a time. As they ask for more detail you can provide it, but you don't have to discuss everything at once. Listen closely and answer only the questions your children ask. Your children may not have much to say during your first conversation, so try to be patient with them.
  • Be as open and honest as possible. Answer your children's questions as honestly as possible and, whenever possible, share positive information with them. You can admit that this is an upsetting or scary time, but let them know that you are doing everything you can to get well. The key is to reinforce that you will all get through this together, as a family.
  • Explain the changes they can expect. Cancer and its treatment can make you feel tired and sick. You may lose weight or lose your hair. Explain this to your children ahead of time so they understand any changes in your appearance or behavior. You may also need to have someone fill in for you during treatment. When you explain these changes, it sends a message to your children that you are still in charge and, most importantly, that they will be taken care of.
  • Encourage your children to express their feelings. Your children may not express how they feel because they want to appear strong for you. Have them draw pictures, write poetry or use puppets to show their feelings. Also, don't be afraid to express your own feelings and let your children know that their feelings are normal. If they are finding it hard to talk to you, encourage them to talk to someone close, such as a friend or relative.
  • Reassure your children. Children depend on their parents for their basic physical and emotional needs. Your diagnosis may challenge your children’s sense of security. Reassure them that your doctors are doing everything they can to make you well again. Let your children know that they will always be cared for and loved. Also, remind them that cancer is not contagious and they did not do anything to cause it.

Tips for caring for children during cancer treatment

  • Maintain as normal a routine as possible. Children thrive on routine—it helps them feel safe. You may not be able to spend as much time with your children because of doctors’ appointments and your treatment schedule. Although you can try to keep as many things the same as possible, you may need to create a new routine that fits this cancer journey.
  • Let your children participate in your care. Remember your children are now part of a family that is fighting cancer. To help them feel included, give them age-appropriate tasks, such as bringing you a book to read, helping you select a wig, etc. However, don’t rely on them to take on too many added responsibilities. Also, try not to be offended if they don't want to help.
  • Maintain discipline. Disciplining your children can be especially difficult during this time. You may feel guilty about it or that you don’t have energy for it. Yet, a breakdown in discipline can send signals to your children that something is very wrong. Try to set consistent, familiar rules and reward good behavior. Your children may behave badly because they are upset or are seeking attention. Let them know that you love and accept them, but not their misbehavior.
  • Provide a sense of control. Cancer can turn things upside down. Try to give your children choices, such as what they would like to wear to school, etc. to help them feel more in control of their lives. Hold family meetings on a regular basis to update your children on how things are going. Let friends and family take over some household duties to maintain stability in the daily routine.
  • Have fun together. Make an effort to have fun with your children. Activities can also help children use up excess energy and relieve anxiety. On days when you don’t have a lot of energy, try reading, watching TV/movies, or doing artwork together. Share poems and songs that have special meaning to you both.
  • Pay attention to warning signs. Children may become withdrawn or misbehave if they are upset. Watch for any disturbances in their behavior or attitude and consider telling their teachers so they may also be alert to changes. Remember, you are the expert on your children. Trust your own sense of how to best support them during this time.
  • Seek counseling/support. Let your children know they don't have to face your illness alone. Arrange for them to speak with a counselor individually or go to family counseling. In addition, a support group for children whose parent has cancer can provide a safe place to share their feelings. A hospital social worker, nurse or psychologist may be able to recommend resources as well.
  • Find your way. There is no right or wrong way to handle the situation. Each family finds its own way to adjust. The actual words you use are not as important as letting your children know that you are there for them. You may even find that you and your children develop a closer connection as you talk about your illness together.

Tips for rebuilding intimacy during cancer care

  • Give yourself time. You and your partner will need time to adjust to the physical and emotional changes cancer brings to your lives. Be patient with yourself if certain side effects, such as stress, pain, depression or fatigue lower your desire for sexual activity. Also, give yourself time to come to terms with changes to your body.
  • Communicate with your partner. An important tool for building intimacy is communication. You may be anxious about resuming sexual activity after cancer treatment, fearing that sex will hurt, you won’t be able to perform, or your partner will no longer find you attractive. Your partner may be anxious about putting pressure on you by initiating sexual activity. Talk openly about your feelings so you understand each other’s needs and preferences.
  • Make necessary adjustments. After cancer treatment, some sexual positions may hurt and certain activities that once gave you pleasure may not any more. For example, for some women, pain during intercourse may be relieved if the woman is on top, controlling the level of penetration. Try to be a guide for your partner and explore your expectations together.
  • Validate each other’s feelings. It is likely that you and your partner will have your own questions and concerns. It’s important to listen to each other’s feelings and point of view without interrupting or being dismissive. Empathize with your partner and try not to take things personally. Avoid statements like “Everything is going to be great.” Instead, say things like “Although I can’t fix it, I am here for you.”
  • Get reacquainted. You and your partner may have disconnected from each other over the course of the cancer journey. Emotional closeness and companionship are important to your relationship, and can help rebuild physical intimacy as well. Start out slowly, by cuddling, kissing and touching. Learn to touch, hold hands and simply relax together. Each day, make a point to say, “I love you” to your partner.
  • Experiment with other forms of intimacy. Even if you can’t have sexual intercourse, you can still maintain intimacy through loving affection and touch. Dim the lights and put on romantic music. If you feel self-conscious, get creative with lingerie. Give your partner a massage. Focus on the sensual, not the sexual. Even going for a walk, watching a movie, swimming or reading together can create intimacy.
  • Plan ahead. Levels of sexual desire vary during cancer treatment. It may help to plan sex for when you have the most energy, or after you take your pain medication, etc. Also, your partner may have moved into a caretaking role, making it difficult to feel sexy around each other. Try to clearly separate time for caregiving and time together as a couple.
  • Enhance your self-image. Cancer can affect your body image and feelings of attractiveness and desirability. Simple boosts like a new haircut, wig, makeup, or clothing may help you feel better about yourself. Your doctor may recommend also medical options (e.g., breast reconstruction, devices to improve erectile function, etc.). Try to remember that cancer doesn’t make you less of a woman/man.
  • Talk with your doctor. Many doctors won't talk with you about your sex life during cancer treatment unless you ask. Although it can be an uncomfortable discussion, it’s an important one to have. Your doctor can clear up any concerns, including the impact of cancer treatment on sexual function. Also, let your doctor know about any sexual dysfunction you experience throughout treatment.
  • Get healthy in other areas. Regular exercise and good nutrition can help stimulate sexual desire by increasing energy and improving your mood. Ask you doctor what type of exercise is best for you. Also, depression can make you lose interest in sex. If you think you may be depressed, talk with your doctor. Also, learn relaxation techniques to reduce stress and muscle tension.
  • Seek professional help. For some couples, a professional counselor can help facilitate communication. You may also find value in talking with a social worker, nurse, chaplain or friend. In addition, support groups can give you both a place to voice your fears and concerns. By talking openly about issues, you can come up with new ways build intimacy in your relationship.
  • Work as a team. During cancer treatment, it is especially important to work together with your partner. The closeness and companionship that comes from teamwork can help you feel more secure and in control. By communicating effectively and making an effort to maintain intimacy, your relationship can flourish in the face of cancer.

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