Support and information to care for your loved one with metastatic breast cancer A CAREGIVER’S GUIDE BEING THERE IS EVERYTHING You are not just a caregiver. You are so much more than that. You are an advocate, a shoulder to cry on, an ear to listen, and a personal assistant. But above all else, you are a supporter, partner, and friend. The care and support you provide for your loved one with metastatic breast cancer is valuable in so many ways. Whether you are a neighbor helping with groceries or a significant other by her side for every doctor’s appointment, you play an important role in ensuring every effort is made to make her journey more comfortable and more successful. Just remember to stay positive. There are options and treatments available for each stage of your loved one’s metastatic breast cancer journey, and your support can make all the difference. I HAVE TO STAY STRONG FOR HER Support and information to care for your loved one with metastatic breast cancer A CAREGIVER’S GUIDE BEING THERE IS EVERYTHING You are not just a caregiver. You are so much more than that. You are an advocate, a shoulder to cry on, an ear to listen, and a personal assistant. But above all else, you are a supporter, partner, and friend. The care and support you provide for your loved one with metastatic breast cancer is valuable in so many ways. Whether you are a neighbor helping with groceries or a significant other by her side for every doctor’s appointment, you play an important role in ensuring every effort is made to make her journey more comfortable and more successful. Just remember to stay positive. There are options and treatments available for each stage of your loved one’s metastatic breast cancer journey, and your support can make all the difference. WHAT ABOUT ME You probably hardly ever ask yourself that. But you should. We know that helping to care for your loved one is very important to you, but you may find that you forget to take care of your own needs. And the pressure of caring for someone can sometimes lead to stress and burnout. It’s important that you take time to think about yourself throughout the journey. If you don’t, it can affect the level of care you are able to provide your loved one. KNOW THE SIGNS Your body is always sending out physical and emotional warning signs of stress. Listen to what your body is telling you so you can take action and find ways to manage your stress. EMOTIONAL WARNING SIGNS • Anger • Inability to concentrate • Unproductive worry • Sadness and periodic crying • Frequent mood swings PHYSICAL WARNING SIGNS • Tension headaches • Neck pain • Chronic back pain • Chronic fatigue • Weight gain or loss • Problems with sleep I TEND TO PUT MY OWN NEEDS ON THE BACK BURNER Sometimes, even when you know the warning signs, you can lose sight of your own well-being. Try answering the following questions— provided by the American Medical Association (AMA)—to get an assessment of how YOU are doing. ANSWER THESE QUESTIONS DURING THE PAST WEEK OR SO, I HAVE... 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. Had trouble keeping my mind on what I was doing Felt that I couldn’t leave my loved one alone Had difficulty making decisions Felt completely overwhelmed Felt useful and needed Felt lonely Been upset that my loved one has changed so much from her former self Felt a loss of privacy and/or personal time Been edgy or irritable Had sleep disturbed because of caring for my loved one Had a crying spell(s) Felt strained between work and family responsibilities Had back pain Felt ill (headaches, stomach problems, or common cold) Been satisfied with the support my family has given me Found my loved one’s living situation to be inconvenient or a barrier to care On a scale of 1 to 10, with 1 being “not stressful” to 10 being “extremely stressful,” please rate your current level of stress: On a scale of 1 to 10, with 1 being “very healthy” to 10 being “very ill,” please rate your current health compared to what it was this time last year: Yes Yes Yes Yes Yes Yes No No No No No No Yes Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No No Yes No RESULT TO DETERMINE THE SCORE: 1. Reverse the scores for questions 5 and 15. (For example, a “No” response should be counted as “Yes” and a “Yes” response should be counted as “No.”) 2. Total the number of “yes” responses. CHANCES ARE YOU ARE EXPERIENCING A HIGH DEGREE OF DISTRESS IF: • Your total “Yes” score = 10 or more • You answered “Yes” to either or both questions 4 and 11 • Your score on question 17 is 6 or higher • Your score on question 18 is 6 or higher KNOW I NEED A PUSH TO THINK ABOUT MYSELF YOUR RIGHTS To learn about your legal rights to take leave from work to care for a loved one, you should speak with your employer or visit www.dol.gov/whd/fmla. TAKE CARE OF YOU If your results told you you’re in distress, you need to look into ways to take care of yourself. But even before it gets to that, you should always take a little time to focus on you. This is what will help you better support your loved one. There are a number of ways that you can do that. PAY ATTENTION TO YOUR OWN HEALTH NEEDS While your loved one is facing health challenges, it’s easy to forget about yourself. But remember that your health is important, too. Make sure to eat right, exercise, and get enough sleep each night. Don’t forget to keep up with your own checkups, screenings, and medications. CARVE OUT A LITTLE TIME EACH DAY FOR YOURSELF It doesn’t have to be something big or take a lot of time, but it’s important to find some time in each day to relax. It may help you feel better and keep a positive outlook. • Take a walk around the block • Put your feet up for a few minutes • Get a massage or a pedicure • Read a good book • Talk to a friend • Visit with family REACH OUT FOR HELP You don’t have to do this alone. There are so many resources available to help YOU, the caregiver, do your job and cope with stress. You can reach out to your immediate community for help, engage with a support group or counselor, or join online communities. LEARN MORE ABOUT WAYS TO CARE FOR YOURSELF AND YOUR LOVED ONE AT WWW.COUNTUSCAREGIVERS.COM GET SUPPORT FOR YOU AND YOUR LOVED ONE WWW.COUNTUSCAREGIVERS.COM Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 © 2013 Novartis Printed in USA 9/13 BST-1071827 REACHING OUT TO OTHERS YOU DON’T HAVE TO DO IT ALONE Many times, you find yourself taking on all your loved one’s needs on your own. It’s understandable that you may be feeling a burden of responsibility for her care. But trying to handle everything by yourself can sometimes be overwhelming. IT CAN BE HARD TO ASK FOR HELP It doesn’t have to be this way. Try enlisting the help of family members, friends, neighbors, and coworkers. What seems impossible for one person to accomplish can become manageable when a number of people pitch in. Plus, people feel better when they can do something to help. HERE ARE SOME THINGS YOU CAN ASK OTHERS TO DO: • Run errands, like grocery shopping or picking up medications • Take your loved one to doctor’s appointments • Help out with childcare • Prepare home-cooked meals • Help with household chores • Look after pets • Spend time with your loved one so you can take a break REACHING OUT TO LISTENERS Often your loved one looks to you for emotional support—someone to talk to and lean on. However, you may tend to suffer in silence because you don’t want to burden her with your own worries. In these times, it’s important to remember that you too can reach out for emotional support. COUNSELING Just like your loved one, you can get access to a social worker or counselor whom you can talk to about dealing with some of the emotions and issues you may be facing. Your loved one’s health care team can be a resource for finding a counselor. You can also find counseling support options through some of the organizations found at WWW.COUNTUSCAREGIVERS.COM SUPPORT GROUPS Joining a support group can help you feel less alone. It’s a safe place for sharing feelings, talking about the challenges and rewards of being a caregiver, and sharing tips and resources. Other group members may have a better understanding of what you’re going through, because they’ve been there too. You can find a number of caregiver support groups at www.CountUsCaregivers.com, such as: SHARE CAREGIVER SUPPORT www.sharecancersupport.org/share-new/support/groups/caregiver CANCER SUPPORT www.cancersupportcommunity.org CANCERCARE www.cancercare.org/support_groups I DON’T WANT HER TO WORRY ABOUT ME REACHING OUT TO THE GREATER COMMUNITY There are a number of resources you can access that can provide direct and immediate support to help you take care of your loved one and yourself. Many of these resources can be found at WWW.COUNTUSCAREGIVERS.COM This organization recognizes the unique physical and emotional needs of those with metastatic, or advanced, breast cancer and has created a comprehensive site that houses all this information. YOU CAN FIND: • Videos of patient and supporter stories, as well as educational videos • Global survey findings and statistics of the emotional experience associated with metastatic breast cancer • Educational information about metastatic breast cancer and treatment options • News, articles, and events in your area • And so much more… You can also join and support Count Us, Know Us, Join Us—a community that reinforces that those living with metastatic breast cancer do count. Visit www.CountUsCaregivers.com to be counted today. It’s also a one-stop shop where you can find numerous other organizations that provide information, financial assistance, online, phone, and in-person support, and more. Here are just a few: ADVANCEDBC www.advancedbc.org MEN AGAINST BREAST CANCER (MABC) www.menagainstbreastcancer.org CANCERCARE www.cancercare.org METASTATIC BREAST CANCER NETWORK (MBCN) www.mbcn.org VISIT WWW.COUNTUSCAREGIVERS.COM TO EXPLORE THESE RESOURCES AND MORE. The above websites (except www.CountUsCaregivers.com) are independently operated and are not controlled by Novartis Pharmaceuticals Corporation. Novartis assumes no responsibility for any information they may provide. REACHING OUT FOR THE SUPPORT YOU NEED In addition to the resources you can find at www.CountUsCaregivers.com, there are also a number of sites you can visit to get direct support for your personal needs as a caregiver and support partner. You can visit these sites or contact the hotlines whenever you need immediate assistance or guidance. CAREGIVER ACTION NETWORK (800) 896-3650 www.caregiveraction.org ELDERCARE LOCATOR (a national directory of community services) (800) 677-1116 www.eldercare.gov FAMILY CAREGIVER ALLIANCE (415) 434-3388 www.caregiver.org MEDICARE HOTLINE (800) 633-4227 www.medicare.gov NATIONAL ALLIANCE FOR CAREGIVING (301) 718-8444 www.caregiving.org SOMETIMES I FEEL ALONE IN THIS STRUGGLE