If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when? – Ethics of the Fathers 1:14 TABLE OF CONTENTS Welcome to this Guide .............................. 2 Basic Information on Being a Caregiver ............................................... 4 Getting the Support You Need ................... 6 Relaxing and Lowering Stress ................... 17 Special Relaxation Exercises for You to Try ......................................... 20 Keeping Your Body Healthy ..................... 21 Finding Spiritual Support ........................ 27 Explore Your Creativity/ Enjoy Social Life ...................................... 31 This guide was made possible through the generous support of the Lucius N. Littauer Foundation. This guide was produced by Ronit Fallek, MPA and Marsha J. Handel, MLS. Cover image by Pol Ledent: www.ledent-gallery.be Designed by: mPrint Design Studio, www.mprintdesign.com Special thanks to Meital Fried, Jody Benton Lee and Benjamin G. Anderson for their contributions to this guide. Contact Montefiore: [email protected], www.montefiore.org/familymedicine Caring for Yourself While for Yourself CaregivingCaring 1 WELCOME TO THIS GUIDE Welcome to Caring for Yourself While Caregiving – your guide to finding useful information, local resources and websites. This guide is a starting point to help you think about the different ways you can care for yourself while caring for a loved one. We did our best to find interesting and helpful resources in the Bronx. Things change all the time so call the programs to find out the latest details. There also may be other great programs for caregivers in your area – if you know of one, please let us know! We also encourage you to use the resources you have and to explore your neighborhood and community. For example: • Talk to your doctor, nurse or social worker about ways to cope with stress and manage your situation • Speak with your pastor, priest, rabbi, or imam about how you are feeling • Take a look at our list of support groups, websites and books • See what classes and events are at your local community center, senior center, religious center, public library, or community college There are many people, places and ways to help and support you! Who is a Family Caregiver? A family caregiver is someone who provides practical help, physical care and/or emotional support for: • An aging parent or elderly relative • A spouse, partner or family member with an illness or disability • A child with an illness or disability • A close friend or neighbor who is part of your extended family • A parent or family member who lives far away – this is called a “long-distance caregiver” Common things caregivers do are schedule and take loved ones to appointments, prepare meals, do household chores, supervise medications, and help with daily activities, personal hygiene or medical devices. Caregivers also give important emotional support by talking with their loved one, sharing feelings and thoughts, helping solve problems, and by just being there. Caring for Yourself While for Yourself CaregivingCaring 2 Caring for Yourself While Caring for Others Taking care of others can be a wonderful experience of giving, sharing and receiving. It can also be a lot of work, stress and responsibility. You may have mixed emotions and feel like you are being pulled in many directions at once. Along with caring for your loved one, you may also be balancing other needs – like caring for your children or other family members, working at your job, having your regular social life, and finding some time for yourself. Caring for someone with an illness or disability can be filled with ups and downs. You may feel fine one day and sad, worried or depressed the next day. You may feel frustrated, angry, resentful, or overwhelmed – and then feel guilty for having these feelings. You may notice you’re more tired than usual. Or feel like you’re not doing enough. All these are common feelings. This guide is about making sure that while caring for others, you remember to take care of yourself too. It may not seem easy to think about taking care of your own needs, but this is one of the best things you can do. It is important to pay attention to how you are feeling physically, emotionally and spiritually. This will help build the strength to deal with stress and will help you maintain your caregiving role over time. Taking Small Steps Has Big Benefits When you are juggling many things at once, even the thought of adding something else can feel overwhelming. Yes, you may want to relax more. But how can you do it in a way that fits in with your life? The most important thing is to take small, slow steps and to add in one thing at a time. Maybe right now you don’t have the time for that relaxing yoga class you’d like to try. The good news is there are many easy, simple ways to feel more relaxed in your day. In each section you will find a “Small Suggestions” box with some ideas of things you can do. Sometimes it’s also just doing the same thing in a new way that helps shift your perspective. For example, try walking on a different street to get to work tomorrow – you may see your morning in a whole new way! Just remember: Even doing one small thing for yourself each week can make a big difference in how you feel and the quality of your life. How Are You? To get started, we invite you to take a moment to think about how you are feeling right now. Are you feeling relaxed or stressed? Do you feel like things are in balance? What would help you feel more supported? Read through the sections of this guide and see what calls to you. What do you need? What will fit into your life? What sounds like fun? There are many different ways to get support. Most important is that you get the type of support that will help you! Caring for Yourself While for Yourself CaregivingCaring 3 BASIC INFORMATION ON BEING A CAREGIVER Caregivers face many challenges. These can be financial, medical or time issues. They can also be emotional, social, family, and health concerns. The websites and books below have useful information to learn more about the basics of caregiving and ways to manage the situation. Websites with Information Next Step in Care United Hospital Fund Family Caregiving 101 www.nextstepincare.org National Family Caregivers Association www.familycaregiving101.org Information for caregivers to help plan a smooth transition for patients from one setting to another (for This site has information and advice on how to care example, from home to a hospital or from hospital for yourself and manage caregiving responsibilities. to a rehab facility). Has many useful information It has special tips on what to do at different stages of sheets and checklists to download. Click on “Terms caregiving and how to communicate with insurance and Definitions” for a dictionary of common terms companies and healthcare providers. healthcare providers may use. In English and Spanish. Family Care Navigator NYC Caregiver: Making It Easier to Care National Family Caregivers Association NYC Department for the Aging www.caregiver.org www.nyc.gov/html/caregiver This site provides a list of organizations and websites This NYC-based website has information on local that offer services for caregivers and patients, legal services, paying for care and legal information for help, advocacy, and more. Click on the picture of the caregivers and grandparent-caregivers. It also has U.S. map and then click on New York. helpful tips on managing caregiving challenges and National Caregivers Library communicating with healthcare professionals. www.caregiverslibrary.org Click on New York to enter the “library.” The “Caregiver Caring for Yourself: Two Resources” (see the left menu bar) has articles, forms Helpful Articles and checklists on the basics of caregiving, caring for Caring for the Caregiver yourself, long-distance care, housing, transportation, National Cancer Institute and legal issues. www.cancer.gov/cancertopics/caring-for-the-caregiver Net of Care This article has helpful tips and words of The Family Caregiver Program encouragement to take good care of yourself, including www.netofcare.org understanding your feelings, asking for help, and This New York-based website has a wide range of talking with others. information and resources for caregivers. The “Finding Taking Care of YOU: Self-Care Help in New York City” database lets you search for for Family Caregivers resources by zip code. The free “Caregiver Resource Family Caregiver Alliance Directory” has a wealth of information and tips on www.caregiver.org/caregiver/jsp/content_node. coping with being a caregiver, caring for yourself, jsp?nodeid=847 managing your loved one’s medical symptoms, and communicating with healthcare providers. Caring for ourselves can be challenging. This article helps you identify the personal barriers that get in the way of caring for yourself and offers practical strategies to move past those barriers. Caring for Yourself While for Yourself CaregivingCaring 4 Books Free Newsletters & Magazines The New York Public Library has many books on loan that Families of Loved Ones Online Magazine may be helpful to you. To find a library near you, call the Bronx http://cantwellmedia.com Library Center at (718) 579-4244 or go to A free, online magazine on topics of interest to family www.nypl.org and click on “Locations and Hours.” You can also caregivers. In English, Spanish, Italian, Korean, and buy the books in this guide at a discount price at websites such Japanese. as www.amazon.com. Family Caregiver Community The Comfort of Home: An Illustrated National Family Caregivers Association Step-By-Step Guide for Caregivers www.thefamilycaregiver.org By Maria Meyer & Paula Derry.