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Reading List for Caregivers

This list of websites, brochures and books can help you with different aspects of your caregiving journey.

Introduction


www.nbmtlink.org

Provides resources and support to patients, families and caregivers experiencing bone marrow/stem cell transplant.  Specific caregiver resources, peer to peer contact as well as material on cGVHD in adults, children and young adults. 

www.marrow.org 

Provides in-depth information and resources on all aspects of marrow and cord blood transplant for patients, donors, caregivers and medical personnel.

www.bmtinfonet.org 

Provides emotional support and information on transplant for patients, caregivers and loved ones.

www.wellspouse.org 

Provides advocacy and support for people caring for chronically ill or disabled spouses.  Membership is $30. 1 year free trial membership with limited access available. Free for military spouses and residents of AZ.

www.youngcancerspouses.org 

Provides practical information for young cancer spouses, such as taking care of yourself, medical care, relationships, and financial/legal issues.  

www.thewellnesscommunity.org 

The Cancer Support Community provides support, education and hope to people with cancer.

www.cancercare.org 

Offers counseling, support groups, financial resources and more to people with cancer.

www.livestrong.org 

Lance Armstrong Foundation provides cancer information, resources and patient navigation.

www.leukemia-lymphoma.org 

Provides information, support and financial assistance to people with blood cancers.

www.caregiver.org 

Family Caregiver Alliance provides information, support and advocacy for family caregivers. Lists family caregiving resources by state.

www.caregiving.org 

This is a national coalition of nonprofits that focus on family caregiving.

www.nfcacares.org 

National Family Caregivers Association provides support, education and hands-on resources to help with day to day caregiving.

www.caregiving.com 

This is a collection of blogs from family caregivers organized by topics. Provides information to assist in everyday caregiving.

www.caregiver.com 

Online version of 'Today's Caregiver' magazine. Organized by interest groups, provides support and resources.

www.familycaregiving101.org 

Provides a comprehensive training manual for preparing volunteers to assist caregivers of older adults.

www.netofcare.org 

The information and resources focus on New York City. There are Chinese language family caregiving manuals and resources available.

www.strengthforcaring.com 

This site provides in-depth information and resources on being a caregiver. They list resources by state and have culturally specific webpages for Hispanic, Jewish, Asian and other populations.

www.cancer.org 

The website for the American Cancer Society.  Learn about what to expect if you become a caregiver for a person with cancer, as well as find suggestions and tips for making sure that you take care of yourself as well.

National Cancer Institute (NCI) Online Publications Locator:

Your Resource for FREE Publications. These publications focus on family/friends audience.

  1. When Someone You Love is Being Treated for Cancer 
  2. When Someone You Love Has Advanced Cancer    
  3. Facing Forward: When Someone You Love has Completed Cancer Treatment 
  4. Caring For Caregivers 

National Cancer Institute (NCI) at the National Institutes of Health  

Website of brochures and booklets of topics related to cancer.

CancerCare online order publications form 

All publications are available completely free of charge

  1. Caring for Your Loved Ones with Cancer  
  2. Caring advice for Caregivers: How Can You Help Yourself? 

Caregiver Resource Directory: Online Version

Practical guide that includes caregiver education and ways to organize materials and information.

A Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspective, 2003

Specifically for BMT caregivers, this book hopes to offer a practical perspective to empower and encourage caregivers.

Across the Chasm: A Caregiver's Story, by Naomi Zikmund-Fischer

Offers a unique glimpse of the transplant experience as seen through the eyes of a caregiver.  Chronicles Zikmund-Fisher's day-to-day life, as she struggles to care for her husband, raise a young child and maintain her sanity.  With humor and candor, she offers a vivid picture of the emotions and challenges caregivers face.

A Caregiver's Survival Guide: How to Stay Healthy When Your Loved One is Sick,, by Kay Marshall Strom

When you are responsible for another person's physical needs, your own needs are often neglected. After caring for her spouse, who for ten years suffered from a rare, debilitating disease, Kay Marshall Strom is able to bring a voice of experience and compassion to the important topic of caregiving.

Love Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving, by Suzanne Geffen Mintz

Much has been written about the caregiver's role in helping the patient, but little has been said about the caregiver - how to care for yourself as you care for others.  This message to caregivers addresses issues such as the impact of caregiving on caregivers, the four principles of Caregiver Self-Advocacy and reaching out for help.

God Knows Caregiving Can Pull You Apart: 12 Ways to Keep it All Together, 2002, by Gretchen Thompson

Insight, support and refreshment are what God Knows Caregiving Can Pull You Apart offers the dedicated and weary caregiver.  Includes stories to provide caregivers with the assurance that they are not alone.

Quick Tips for Caregivers, by Marion Karpinski

Provides thorough instruction in basic caregiving procedures and presents practical suggestions to help caregivers reduce stress and obtain outside support.  Topics include personal care, infection control, nutrition, wheelchair use, fall prevention, and fire safety.  Available in English, Spanish and Chinese.

American Cancer Society Complete Guide to Family Caregiving, by Julia Bucher and Peter Houts

Updated to provide the latest information, techniques, resources and insights into caregiving, this practical guide offers manageable solutions to the many conditions and situations caregivers may face.  This reference includes concise checklists, questions to ask the doctor, where and when to turn for more help, a comprehensive list of specific resources, and a large glossary of terms.

Coping with Emotions


www.strengthforcaring.com 

A comprehensive website designed to provide family caregivers with a broad range of expert content and information, an emerging online community, daily inspirations and much needed support.

Cancersurvivors.org 

Offers helpful insights, information, and resources on how to develop coping skills to meet patient’s emotional, physical, and financial needs caused by their cancer experiences.

Mayo Clinic Stress Management Guide

Empowers people to manage their health by providing a unique collection of articles that provide useful, up-to-date information about strategies to cope with stress.

"Dealing with Depression: Self-Help and Coping Tips"

Article that offers practical ways to deal with depression through self-help and coping tips.

"Thought Awareness, Rational Thinking, and Positive Thinking"

Offer suggestions for having greater thought awareness, rational thinking and positive thinking.

A Guided Journal for Caregivers: A Journey into Renewal and Well-Being, by Marion Karpinski, RN

This guided journal offers helpful exercises for caregivers, while allowing them to write and reflect on their own life experiences.  

Write for Life: Healing Body, Mind and Spirit through Journal Writing, by Sheppard Kominars

This self-paced book offers many facts discovered by research on the healing benefits of writing and of self-discovery.

Writing for Emotional Balance:  A Guided Journal to Help You Manage Overwhelming Emotions, by Beth Jacobs

This self-guided journaling book offers helpful information, ideas, and active exercises that can help readers feel more comfortable and directed in their own emotional life.

Communication


www.cancer.org

Caregiver communication tips. Good communication allows you to express yourself, help others understand your limits and needs, and understand the limits and needs of the person with cancer.

www.livestrong.org 

The LIVESTRONG Guidebook helps survivors, loved ones and caregivers. Free, but costs for shipping and handling.

www.thefamilycaregiver.org 

NFCA offers a virtual library of information and educational materials. Tips and Tools for family caregivers, information on agencies and organizations which provide caregiver support, opportunities to connect with others, and access to a support forum.

www.cancer.gov

Information to help caregivers cope while caring for a loved one with cancer; helps someone with cancer cope with the illness. (National Cancer Institute)

www.nbmtlink.org

“Caregivers' Guide for Bone Marrow/Stem Cell Transplant.” Booklet with practical tips from caregivers. Cost $12 or free online.

Social Support


www.lotsahelpinghands.com 

Lotsa Helping Hands is a simple, immediate way to assist loved ones in need. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion.

www.caringbridge.org 

Online space where you can connect, share and receive support.  A personalized "caring" social network.

www.carepages.com 

Online community where people come together to share the challenges, hopes and triumphs of anyone facing a life-changing health event. Through personalized websites, members can relate their stories, post photos and update friends and family instantly. In turn, people who care send messages of love and encouragement.

www.whatisacaregiver.org

Information on what is a caregiver and caregiver resources in Minnesota.

www.cancersupportcommunity.org 

The Cancer Support Community offers a menu of personalized services and education for all people affected by cancer.  These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices, as well as online.

www.leukemia-lymphoma.org

Offers a number of helpful resources to caregivers, such as a Peer-to-Peer Telephone Support Program, Blood Cancer Discussion Boards, and Family Support Groups.

www.cancercare.org 

Offers counseling, support groups, financial resources and more to people with cancer.

www.youngcancerspouses.org 

Provides practical information for young cancer spouses, such as taking care of yourself, medical care, relationships, and financial/legal issues.   

www.ACOR.org

Unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment.

Physical Health


www.thepedometercompany.com

Source for pedometers and step tracking supplies.  A yearly step chart is available with a minimum order of 2 charts for $5.00.

www.Everydayhealth.com

General health information, nutrition, and fitness site. Hosts a variety of caregiving topics on stress relief, caring for the cancer patient, etc.

https://aom3.americaonthemove.org

Promotes healthy eating and active living with an emphasis on walking.

www.foodfit.com

Recipes for healthy eating.

www.mondaycampaigns.org

Promotes healthy behaviors (exercise, diet, stop smoking) with Monday reminders.  Has a special Caregivers Monday promotion.

www.sparkpeople.com

Site to track calories and exercise, share healthy recipes and get group support for diet and fitness.

www.smokefree.gov

Free stop smoking program.  Easy to use with good tools to help people quit and stay quit.

Relax and Recharge


Mayo Clinic Guided Relaxation

Last about 7-8 minutes.  Has piano music, candle flame to focus on, soft female voice guiding through breathing techniques.

Guided 10 minute relaxation exercise

Includes ocean visual and soft music, ocean sounds, and voice guided.

Guided 8 minute relaxation exercise focusing on muscle relaxation

Includes soft music and variety of nature visuals.

Guided 15 minute progressive muscle relaxation exercise 

4 minutes of relaxing instrumental music by Alejandro Santoyo with ocean-themed nature visuals 

10 minutes of relaxing instrumental music with forest-themed nature visuals 

10 minutes of relaxing instrumental music with desert-themed nature visuals 

10 minutes of relaxing instrumental music with flower-themed nature visuals 

6 minutes of water-themed nature sounds with forest visuals 

8 minutes of desert-themed nature sounds with desert visuals 

5 minutes of rain-themed nature sounds and rain visuals 

www.healthjourneys.com 

Relaxation resources available for purchase.

www.Everydayhealth.com

General health information, nutrition, and fitness  site. Hosts a variety of caregiving topics on stress relief, caring for the cancer patient, etc.

www.Thewellnesscommunity.org

The Cancer Support Community offers a menu of personalized services and education for all people affected by cancer.  These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices, as well as online.

www.Relaxation.com

In addition to selling massage and back care resources, this site offers free guides to meditation and relaxation exercises.  Also offers information about stress and coping.

www.healthy.net

This site offers a variety of health care resources with the focus on the individual taking control of his/her health care.  Provides numerous relaxation strategies and resources.

Breathing: The Master Key to Self Healing, by Andrew Weil, M.D.

A complete course of eight breathing exercises to learn the art of healthy breathing.  In easy-to-follow language, Dr. Weil explains the secret of breathwork's power over your health and its remarkable ability to influence and even reprogram the nervous system.  From increasing energy, to lowering blood pressure to improving circulation to beating anxiety disorder without drugs, here is your guide to the benefits of breathwork.

Relaxation and Wellness, by Belleruth Naparstek Available at www.healthjourneys.com 

Guided imagery is for facing any stressful situation, to help with general anxiety, or to just promote a feeling of peace, balance and optimism.  The images heighten feelings of love and safety, pump up serotonin and promote an energized calm.

A Moment's Peace: Reducing Stress and Creating Balance through Guided Visualization, by Tracy Carreon available at www.healthjourneys.com

This relaxing and revitalizing set of three simple, direct, easy-to-follow guided imagery exercises is as effective as it is delightful and pleasing.  Clear, confident, helpful directions to guide listeners in practices such as belly-breathing, imagery and affirmations. 

Five Good Minutes: 100 Morning Practices to Help You Stay Calm and Focused All Day Long, by Jeffrey Brantley, Wendy Millstine, and Wendy Matik

This book offers 100 simple morning practices utilizing mindfulness, relaxation, or imagery techniques to help readers stay calm and focused all day long.

Five Good Minutes in the Evening: 100 Mindfulness Practices to Help You Unwind from the Day and Make the Most of Your Night, by Jeffrey Brantley, Wendy Millstine, and Wendy Matik

This book offers 100 engaging practices that can lead readers out of a hectic day and into a peaceful night. Practices include mindfulness exercises, positive visualizations, and affirmations.

Relaxation and Stress Reduction Workbook, by Martha Davis, Matthew McKay, and Elizabeth Robbins Eshelman

This book offers resources for effective and up-to-date techniques for relaxing the body, calming the mind, and refreshing the spirit.

Full Catastrophe Living; Using the Wisdom of Your Body and Mind to Face Stress Pain and Illness, by John Kabat-Zinn

This book will teach readers techniques to heal their body, mind, and spirit. Readers will learn how to use mindfulness medication and mindful yoga to improve their overall quality of life and relationships.

Relax-You May Only Have a Few Minutes Left: Using the Power of Humor to Overcome Stress in Your Life and Work, by Loretta LaRoche

This book provides practical exercises, hilarious anecdotes, and helpful advice on how to manage with stress.

Peace and Positives


Empowering Caregivers: Inspirational Words of Wisdom from the Heart

The National Organization for Empowering Caregivers (NOFEC) was created for hands-on emotional and spiritual support, education resources, humor, and respite to caregivers in times of need.

Empowering Caregivers: A Little Laughter to Lighten Your Soul

The National Organization for Empowering Caregivers (NOFEC) was created for hands-on emotional and spiritual support, education resources, humor, and respite to caregivers in times of need.

CafePress

Offers a wide assortment of unique and humorous apparel.

WikiCancer Staying Positive

For survivors, family, and friends of those with cancer.  Discuss the benefits of staying positive when you are feeling negative.

www.soulfulliving.com

This website offers numerous links to resources about ways to reflect on life and the benefits that come with reflection.

http://www.cancerhopenetwork.org

Secured social network where people who are affected by cancer can exchange experiences and share thoughts.

Dancing in Limbo: Making Sense of Life after Cancer, by Glenna Halvorson-Boyd and Lisa Hunter

Real-life experience. Interviews with cancer survivors about what is life after surviving cancer.

I am Whole Now That I have Cancer, by John Robert McFarland

Meditations on cancer, a journey of individual steps.

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