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Assessing Your Needs as a Care Partner
Do you make resolutions this time of year? We usually do, and often catch ourselves repeating the same ones we made last year. Those who have been in a caregiving role often discover the hard way that they must take care of themselves as they care for others. Caregiving for someone with a brain tumor is a marathon, not a sprint, and requires a healthy lifestyle for the body, mind and spirit.
Caregivers are heroes who deny themselves for the call of love and duty. They put the needs of others first and often push themselves past safe limits. Feeling guilty for thinking of their own needs and making provisions for respite, they often break down emotionally and become ill physically. They commonly do so without ever asking for help, and those who are their friends and loved ones never ask.
If you are a caregiver and haven’t had time or the will to resolve anything yet for 2012, here are a few suggestions:
Resolution #1: I must rest. I must take the time each day to remove myself from the situations that stress me and make me tired, and I must do so safely.
Resolution #2: I must ask for help. I must not feel guilty for this. I know my friends and loved ones would want to assist. And for me to rest, I will have to ask for help.
Resolution #3: I must adopt a healthy lifestyle. I will attempt to get physical exercise every day if possible, if even for a few minutes. I will make healthy food choices, and I will not abuse alcohol or drugs. I will schedule and keep regular visits with my healthcare provider.
Resolution #4: I will take care of my spiritual health. I will feed my inner self through meditation, prayer, silence, reading, the arts, or in other ways I consider true. I will contact the ABTA for resources on seeking wise and professional council if needed.
Resolution #5: I will take care of my emotional health. I will not walk this road alone. I will share my story with others. I will seek their advice. I will continue to enjoy hobbies and explore new ones that interest me. I will seek guidance from the ABTA if needed.
Resolution #6: I will educate myself about the brain tumor that is affecting my loved one. I will investigate local caregiver community resources and attempt to follow recommendations.
Resolution #7: I will find humor in living each day. I will not feel guilty about laughing, even when times are bad. I will try and laugh with my loved ones and friends.
Resolution #8: I will love and honor my loved one or friend coping with a brain tumor in the moment, in the now, just as s/he is. I may grieve the effects of our brain tumor journey at times, but I will honor the person s/he continues to be and our relationship.
Resolution #9: I will see myself as a hero and value my gift of caregiving. Heroes are human and have faults and weakness, but heroes draw upon a silent strength and overcome. Often, the most heroic thing I can do is to say, “I will wake up tomorrow and try my best.”
Resolution #10: I will clasp the hand of my loved one and the hands of other caregivers, lifting both mine and theirs in triumph over the disease that seeks to steal. I will give back to them, and to myself, our humanity.
The editorial above was adapted from an originally published article at MariaShriver.com and is being re-published here with permission.
New to the Caregiving Role? Please visit:
Orientation to Caregiving Handbook.
This resource helps caregivers understand brain tumors, what to expect, how to care for a loved one, paying for healthcare, planning for the future and much more. For more caregiving information, feel free to contact our ABTA CareLine 800-886-ABTA(2282) or email ABTAcares@abta.org.
Helpful tips for Alleviating Stress:
Caregiver Stress Management
Care for the Caregiver
Psychosocial Aspects of Caregiving
Care Options
For more information and support for caregivers, please click one of the links below:
Face to Face Support Groups
ABTA Connections Pen Pal program
Orientation to Caregiving Handbook
Online Support Groups and Websites
Resources for Stress Management and Self-Care
Organizations and Programs
Governmental Resources
Products for Home Care
FACE TO FACE SUPPORT GROUPS:
We offer listings of support groups for both patients and caregivers. Please contact our licensed healthcare professionals at 800-886-ABTA(2282) or email us at ABTAcares@abta.org if you would like to receive the list for your state.
ABTA's PEN PAL PROGRAM:
A program to help connect brain tumor patients or caregivers with others who are in a similar situation. Please contact our CareLine at 800-886-ABTA (2282) or ABTAcares@abta.org if you would like to know how to be part of this program and connect with other caregivers. Please click here to learn more about the ABTA's Pen-Pal Program.
ONLINE COMMUNITIES & SUPPORT GROUPS:
There are a variety of internet-based resources, including online communities, support groups, listserves, and chat rooms, all through which caregivers can share information and support each other. There are also websites focused on the needs of caregivers. Internet-based forums offer an alternative for those who do not have access to a face-to-face support group in their area, or who feel more comfortable discussing sensitive brain tumor issues in a more anonymous manner using an online format. Access is easy regardless of the weather, time, or location. Most online forums require that you subscribe or register prior to sending messages. After subscribing as directed, you'll usually receive a confirmation as well as a welcome message. Each forum typically has its own “netiquette” rules and procedures. Save those guidelines; they will also tell you how to unsubscribe if you choose to leave the group. The group may also provide you with directions for obtaining your email in “digest” form—this is a simple way of gathering all the participant messages into one email or one folder on a daily or weekly basis (depending upon how the subscription is offered.) Below are links to online support resources and websites specifically geared for caregivers.
AARP
A website for caregivers offering message boards and articles on topics such as guardianship, long distance caregiving and stress management. Caregivers can access extensive tools filled with interactive features, such as expert videos, calculators and worksheets.
AND THOU SHALT HONOR
Materials developed in connection with Bill Moyers’ PBS Special on caregiving.
THE HEALING EXCHANGE BRAIN TRUST
A special interest online community for caregivers of brain tumor patients facilitated through The Healing Exchange Brain Trust.
TODAY'S CAREGIVER
A website offering internet discussions, a care directory, listings of caregiver support groups throughout the country, carelinks, caregiver stories, and a Caregiver Mall, which offers books videos, products and services for caregivers.
CAREGIVERS DIRECTORY
Offers articles on caregiving, information about support groups, a Caregiver’s Resource newsletter and links to a variety of services for caregivers, including products, adult day care, home health, homemaker, hospice, nursing home and respite services by state.
CARINGBRIDGE
Create a personal webpage to share health information with designated family and friends.
CARINGROAD
An interactive online caregiver support network.
CAREGIVING.COM
Offers a variety of resources for caregivers, including online support groups, an e-newsletter, caregiver message board, a caregiving packet, caregiver stories, tips, seminars and workshops.
FAMILY CAREGIVER ALLIANCE
Offers literature and resource information, including a newsletter, fact sheets in multiple languages, and information about specific diseases including brain tumors in addition to caregiving strategies.
LOTSA HELPING HANDS
A free online calendar that allows caregivers to coordinate caregiving needs among friends and family members and other helpers. Offers a place to keep friends and family informed with updates, photos, message boards and more.
MY LIFELINE.ORG
Offers a helping calendar, an easy tool where friends and family can view the treatment schedule and learn how to best help.
NATIONAL ALLIANCE FOR CAREGIVING
Offers links to caregiver organizations and resources for caregivers and professionals.
NATIONAL RESPITE LOCATOR
Respite services offer a temporary break from caregiving responsibilities for caregivers of those with disabilities, chronic and life threatening illnesses. Call or search website for services in your state.
NET OF CARE
Net of Care is a resource network for caregivers. Features online support, education and information on the daily aspects of caregiving, plus a searchable local and national resource database, telephone support groups and an e-newsletter.
WELL SPOUSE ASSOCIATION
Offers bulletin boards, an email listserve and an online mentorship program to link a spouse caregiver to another more experienced spouse caregiver by email or phone.
WHAT FRIENDS DO
Designed to coordinate the support of friends and family for individuals experiencing a crisis or life changing event. Offers user the ability to create a free custom website to support a friend during a life-changing event.
RESOURCES FOR STRESS MANAGEMENT AND SELF-CARE:
Many hospitals now offer programs that utilize the connection between mind, body and spirit to promote relaxation, anxiety management and wellness. You can contact the social work department or center for integrative medicine at your local hospital or medical center or your doctor’s office to see what programs or classes are available in your community.
HEALTH JOURNEYS
Offers a variety of videos, CDs, software and books to promote relaxation, wellness and healing. Products include resources on guided imagery, meditation and self-care.
ORGANIZATIONS AND PROGRAMS:
CANCERCARE
Offers a telephone support group and an online support group for caregivers. Also offers a variety of resources, including telephone education workshops, caregiver links, a bookstore on caregiver issues, practical tips and suggestions for coping with the emotional issues affecting caregivers. These services as well as counseling, financial assistance and practical help are provided by trained oncology social workers free of charge.
NATIONAL VOLUNTEER CAREGIVING NETWORK
A nationwide interfaith volunteer caregiving program of The Robert Wood Johnson Foundation, offering services to individuals with long term disabilities and their families. Services include providing rides, running errands, home visiting and helping with day-to-day tasks such as bill paying.
AMERICAN RED CROSS FAMILY CAREGIVING PROGRAM
A program to teach skills to family caregivers. Offers hour-long modules on topics such as home safety, personal care, care for the caregiver, and legal and financial issues.
NATIONAL COALITION FOR CANCER SURVIVORSHIP (NCCS)
Offers information about caregiving through online resource.
NATIONAL FAMILY CAREGIVERS ASSOCIATION
Offers practical information, support and public awareness resources and a variety of publications.
STRENGTH FOR CARING
Offer caregiving tips, practical advice for daily care, information on money management, health insurance, legal issues and living options.
THE WELLNESS COMMUNITY
Has centers throughout the US that provide free psychological and emotional support to cancer patients and their families. Facilitates support groups, offers help with stress reduction, cancer education, workshops, classes and social events.
GOVERNMENTAL RESOURCES:
CENTERS FOR MEDICARE SERVICES
Offers a publication, “Medicare Basics: A Guide for Family and Friends of People with Medicare” that addresses Medicare coverage for home health, prescription drugs and nursing home care.
FAMILY MEDICAL LEAVE ACT
Legislation that requires employers with 50 or more employees to offer up to 12-weeks of unpaid leave to eligible employees to care for a seriously ill family member (spouse, child or parent). For more information about this Act contact the US Dept. of Labor, Employee Standards Administration, Wage and Hour Division.
NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM
A program developed by the Administration on Aging of the US Dept. of Health and Human Services (HHS) following enactment of the Older Americans Act Amendments of 2000. It provides services for caregivers in partnership with Area Agencies on Aging and local community service providers, including information, assistance in accessing support services, caregiver training and respite care.
PRODUCTS FOR HOMECARE:
THE CAREGIVERS MARKETPLACE
An online store for caregiver products. Offers a cash back program for eligible products, such as nutrition, incontinence, bathing, skin care, digestive health and more.
Last updated January 18, 2012
8550 W. Bryn Mawr Ave. Ste 550
Chicago, IL 60631
Phone: 773-577-8750
Fax: 773-577-8738
CareLine: 800-886-2282
E-mail: abtacares@abta.org