Some people who are caring for an older person do not realize that all the things they are doing are called "caregiving." They may say, "this is just what families do for each other," or "this is just what good friends do for each other." However true these statements are, they tend to mask two things: the value of this care both to elders and to the community at large; and the significant toll that this work can take on the caregiver.

For most caregivers, their activities are rewarding and based on close feelings of love and attachment to the person they are caring for. For most elders, the care they receive brings comfort, companionship, practical help, safety, and enhances their health and wellbeing.

While acknowledging all the benefits of caregiving to both elders and caregivers, it is also important to say that elder care can involve considerable sacrifice on the part of family caregivers. Some have to take a leave from work. Some retire early. Others feel constant conflicts between job responsibilities and the demands of caring for family at home.

Caregiving can be stressful. Taking on the responsibility for someone else's affairs, determining what assistance is needed, finding appropriate and affordable resources, coordinating services and providing care, all of these are challenging tasks.

Caring for an elder can be a very isolating experience, especially for those who have limited help or are the sole caregiver for an elder who cannot be left alone for long periods of time.

And caregiving can be tiring! Fatigue is common and frequently reported by caregivers of elders.

There are a wide variety of types of support to meet the challenges of providing elder care. Four kinds of support are highlighted here that may be useful to both short-term and long-term caregivers.

Knowledge is power, and the first thing caregivers need is information so they will be better prepared for both the current and future needs of the elder in their care. This information may be about how to locate a service, or how to apply for a benefit. Whatever the topic, knowing what resources are available is a first step for helping people feel comfortable in the caregiver role.

But caregivers need more than information. Caregivers need training in a variety of health care related skills, whether knowing how to give CPR, to dress a surgical wound, or to administer medications, these are all skills that require training.

In this time of escalating health care costs – with hospitals and rehab facilities shortening the length of patient stays - families are being asked to provide more and more care for elders requiring greater and greater levels of skill. They may be expected, for example, to keep wounds clean, give medications, or monitor heart and blood sugar levels, but often they are not given the training they need to provide this care effectively.

There are a number of organizations that provide health-related courses and training sessions.

Visiting Nurse Association of America (VNAA) – their RNs (Registered Nurses) provide in–home training to caregivers for wound care. They also have classes in topics such as nutrition, diabetes, and asthma. Go to Visiting Nurse Association of America > Enter your city, state or zip code > find a VNA near you.

American Red Cross has courses in first aid that combines lectures, demonstrations and video with hands-on training and practice to recognize and respond to emergencies including shock, cardiac and breathing emergencies, heat and cold emergencies, sudden illnesses and poisonings. Other courses include training in CPR, and how to use automated external defibrillators (AEDs) to save victims of sudden cardiac arrest. Go to American Red Cross and enter your zip code to find classes near your community.

"Disease organizations" provide education and training on various aspects of caring for elders including care for specific diseases, such as cancer, diabetes, Alzheimer's. See Caregiver Support Programs through Organizations Linked to Specific Diseases", below, for listings by disease.

Another area in which caregivers need expertise is in the collection and organization of information about health care, home care, medications, safety equipment, to name a few. These records become vital in communicating with the many providers involved in health care and home care for the elderly, but are difficult to organize without experience. Fortunately there are tools to help caregivers keep all this information organized. In central Massachusetts, the Central MA Family Caregiver Support Program has developed "The Caregiver's Organizer" which can be downloaded from their website: MA Family Caregiver Support > Services and Resources Provided > the Organizer, and click on one of ten languages to print the PDF.

Respite means "time off." ' Every caregiver — especially full-time caregivers – needs time off. Respite through substitute care can be provided on a regular basis, such as three week days a week, or can be scheduled in advance when needed for vacations or special occasions. There are two major ways that respite programs are run:

1. In-home care — provided by a companion, homemaker, personal care assistant, or home health aide who comes into your elder's home or your home. Sometimes volunteers are available through a "Friendly Visitor Program" or local faith-based organizations. Usually this is done 1-2 times a week for four hours or less to provide companionship and supervision, but no personal care or household services. In-home care allows caregivers to go out, do errands, attend to personal business, exercise. It can be arranged through your local ASAP or from private service providers. Private services are expensive, but they are particularly important for caregivers who are employed, or live out of state.

2. Out-of-home care and activities for elders living at home — Adult Day Programs offer a safe and familiar environment for the elder and provide caregivers with relief, and can be arranged through your local Aging Service Access Point (ASAP) or Council on Aging (COA).

Types of Out-of-Home care:

Adult Day Care Centers – for caregivers looking for one or more days of regular respite a week, provides recreational programs and meals for elders who need supervision, usually due to dementia or Alzheimer's.

Adult Day Health — provides an organized program of health care, supervision and social activities for elders with some health conditions that need to be monitored, again for caregivers looking for regular respite.

Social Day Care Groups — provide daytime supervision outside the home, usually with snacks or meals, along with recreational and social activities.

Emergency Relief Respite Programs — are available to caregivers who have a personal or medical emergency - such as becoming suddenly ill, or having to attend a funeral out of town. These programs usually utilize a room in a long-term care facility or rehab center, and the elder is taken care of as if she or he were a resident in that facility.

For information on services nationwide, see the National Respite Locator Service, a free service that connects caregivers and respite programs in their own community or the community where their elderly relative resides. Go to National Respite Locator Service.

For information on subsidized respite services in Massachusetts:

MA Home Care Program – administered by local Aging Service Access Points (ASAPs) in partnership with the MA Executive Office of Elder Affairs (Elder Affairs). There are income eligibility requirements for this program. Contact your local ASAP for details.

MA Family Caregiver Support Program administers a respite program that has age-only eligibility requirements: the elder be 60 years of age or older. Contact your local ASAP for details. Web site: MA Family Caregiver Support Program.

Securing support from other family members, friends and community groups is essential. Caregiving is not an activity to be done alone. Joining a support group is not for everyone, but it is an option some caregivers find helpful. In these kinds of groups caregivers can exchange information about resources, and point each other toward organizations that have been particularly helpful.

Support groups can also encourage self-care, and lend support to the idea that it is not selfish for caregivers to attend to their own needs. They can help caregivers cope with both the emotional and physical consequences of caregiving by teaching stress management methods, and providing exercise classes. Most support groups are run by trained professionals, such as social workers, and can help caregivers devise productive strategies for dealing with intra-family conflicts or tensions that may arise around difficult caregiving decisions.

There are many organizations to help you find a support group suited to your needs. Some are organized around a particular city or region, while others are focused on support by the kind of illness. There are also some health care providers in Massachusetts that provide caregiver support groups. Call your primary care physician (PCP) or your health insurance provider to get referrals to groups covered under your health plan. One of the best ways to access support groups in your area is through the Massachusetts Family Caregiver Support Program. Contact your local ASAP for more information.

Sometimes the focus on meeting the needs of others results in caregivers ignoring their own physical and emotional health. This can be quite dangerous. There are tools to help caregivers assess their own health and well-being. For example, the American Medical Association has developed a "Caregiver Self-Assessment Questionnaire". It is reproduced here: Caregiver Self-Assessment Questionnaire.

Many caregivers are employed, and combining a job and elder care offers special challenges. Employed caregivers should check with their Human Resources Department for information about employee assistance resources. Workplace support programs can assist employees with local and long-distance caregiving in the following ways:

Information and referral services. These "I&R" services can help caregivers with locating home care services, housing options, and long-term care facilities.

Flexible work arrangements, such as leaving early or coming in late, so that caregivers can take elders to doctor's appointments, or be with them for minor out-patient procedures.

Short-term and long-term leaves, with job protection and continuation of benefits.

If an elder has a "serious health condition," employed caregivers may be entitled to 12 weeks of leave to care for an elderly spouse or parent through the Family and Medical Leave Act (FMLA). The FMLA only applies to workers who work in firms of 50 or more employees and who meet certain other eligibility requirements related to length of service and hours worked per week. Although this law does not cover all employees, it does provide leaves that are job-protected and ensure continuation of health benefits for those who are covered.

There are several organizations that have detailed information on your rights under the FMLA, and can tell you if there are additional benefits under state law for family leave:

Labor Project on Working Families – a national non-profit advocacy and policy organization providing technical assistance, resources and education to unions and union members on family issues in the workplace. See Labor Project on Working Families or 510-643-7088.

National Partnership for Women and Families is a non-profit, non-partisan organization that uses public education and advocacy to promote fairness in the workplace, quality health care, and policies that help women and men meet the dual demands of work and family. See National Partnership for Women and Families > Our Work > FMLA, or call 202-986-2600.

U.S. Department of Labor, Wage and Hour Division regulates the FMLA and advises employees on their rights under the law. Call toll free 1-866-487-9243, or go to: U.S. Department of Labor > Find It! > Agencies > ESA > FMLA.

For strategies to help employees and employers address the issues created by caring for elders while working, Bringing Elder Care Home offers specialized publications, including a free e-newsletter. To subscribe go on the website, Bringing Elder Care Home or call for more information 508-854-0431.

The Commonwealth of Massachusetts – through a partnership between the Executive Office of Elder Affairs and the Aging Service Access Points and Area Agencies on Aging (ASAPs/AAAs) – provides a statewide program focused on supporting the needs of caregivers in particular. The program receives federal funding under Title III-E of the Older Americans Act.

The overall goal of the program is enhance the ability of family caregivers to keep elders at home in a safe and supportive environment. Each program works to provide support in five key areas:

Information about available services, community resources and local programs;

Assessment of Needs and Access to Services through one-on-one assistance to identify options and gain access to community-based services;

Training, support and counseling such as caregiver support groups and training classes to assist caregivers in making decisions, solving problems and managing stress;

Respite Programs to provide temporary relief services through in-home care, or adult day care or emergency respite; and

Supplemental services, on a limited basis, for home modifications and repair, transportation, and other things it may be difficult for the caregiver to do.

These programs primarily serve family caregivers of adults 60 years of age and older, and people of any age with a diagnosis of Alzheimer's. There are no income eligibility requirements for information or services.

The program gives priority to caregivers with the greatest social and economic need, but it is also open to middle income families. There are no income–related eligibility criteria for adult day care and respite programs, although there is limited availability. There are no eligibility criteria for case management services which are provided free for the first six months. A basic needs assessment is offered free of charge by elder care advisors, after that a fee of $75 is suggested.

The MA Executive Office of Elder Affairs partners with each Aging Service Access Point (ASAP) and Area Agency on Aging (AAA) in the state to create the MA Family Caregiver Support Program. In some parts of the state, the ASAPs and AAAs have collaborated and created a regional Family Caregiver Support Program that pools the resources, knowledge and experience of the participating agencies. There are two such collaborative ventures described below. (For information on programs run by a single ASAP/AAA, see the Directory, Section 8 to find the Family Caregiver Support Program in your own city or town.)

Central Massachusetts Family Caregiver Support Program serves family caregivers in the Worcester area and surrounding communities. It is a collaboration of Central Mass Agency on Aging, Elder Service of the Worcester Area, Montachusett Home Care Corporation, and Tri-Valley Elder Services. See Senior Connection > Family Caregiver Support Program, or call 508-852-5539 V/TDD, or 800-244-3032 V/TDD.

Senior Connection is a department of the Central Massachusetts Agency on Aging. They run an interactive website and its sub-site Connection for Caregivers, which offers facilitated online support groups, classes, and a 24 hour informal caregiver chat room. Their "Guide to Elder Services (GES)" is an online searchable database consisting of 1900+ facilities, agencies, organizations and providers in Central Massachusetts. The site also offers a number of useful articles and publications, notably a guide called "The Caregiver's Guide" which produced by the Central Massachusetts Family Caregiver Support Program. It is a clearly written guide to caregiving that includes the ABC's of supporting elders and caregivers in the community. For a free copy, go to Senior Connection > Publications and Brochures, or call 508-852-5539 V/TDD, or 800-244-3032 V/TDD.

Caregiver Alliance of Suffolk County is a collaboration of five elder service organizations: the Boston Commission on Affairs of the Elderly, Boston Senior Home Care, Central Boston Elder Services, Ethos, and Chelsea-Revere-Winthrop Elder Services. The Alliance's mission is to support caregivers of the elderly and grandparents raising grandchildren through enhancing their coping skills, increasing their knowledge, and minimizing the stress of caregiving. Services in support of this mission include one-on-one consultation, educational workshops, support groups, respite care scholarships, and specialized information and referral for non-English-speaking caregivers. To learn about available services call Boston Elder Info at (617) 292-6211; the Caregiver Alliance at (617) 277-7416 ext 136; or visit Caregiver Alliance.

Caregiver support services and resources that are culturally and linguistically sensitive help to link caregivers from diverse communities to the broad array of elder services and resources available in Massachusetts. Some of these organizations are listed below, and you may want to check with your clergy or religious affiliation for additional resources:

Asian Center of Merrimack Valley, Inc. — collaborates with area elder organizations to provide services to Cambodian, Chinese and Vietnamese elders. Their elders group meets monthly, and members share meals, socialize, receive basic medical screenings, and hear speakers on health issues and services available to seniors. Other events include field trips and Vietnamese and Cambodian New Year celebrations. See Asian Center of Merrimack Valley, Inc. > Click to Enter > Elder Program, or call 978-683-7316.

Asian American Civic Association (AACA) provides a variety of services, including Housing Counseling, Social Security Assistance and helping elders to fill out forms and read letters. See Asian American Civic Association > Social Services, 617- 426-9492.

Casa Latina, Inc. serves Latino families of all ages in Hampshire Country, MA, and serves elders and their caregivers by providing a medical interpreting service and running a group to train Latino elders to provide support to their peers. See Casa Latina, Inc. > Programs, or call 413-586-1569.

Catholic Charities, Archdiocese of Boston provides many social service programs for elders throughout Eastern Massachusetts, including home visiting programs, adult day health, visiting nurse services, a Foster Grandparents program, support programs for grandparents rearing their grandchildren, and Basic Needs Services which provides food, fuel, utility, and rental assistance. Visit Catholic Charities, Archdiocese of Boston, or call 617-482-5440.

Faith in Action volunteers help those in need by providing non-medical assistance with tasks such as picking up a few groceries or running errands, providing a ride to the doctor, friendly visiting (talking and listening,) reading, or helping to pay bills. Call 1-877-324-8411, toll free, or visit their website for list of local chapters: Faith in Action.

Greater Boston Chinese Golden Age Center promotes the general welfare of Chinese-speaking Asian elders by helping them to maintain their independence and remain at home. The Center offers services such as Nutrition, Adult Day Health, Elder-at-Risk, Lifeline, Transportation and Congregate Housing. See Greater Boston Chinese Golden Age Center > Services & Programs, or call 617-357-0226.

Haitian American Public Health Initiative (HAPHI) is dedicated to providing members of the Haitian community with health, service and skill-building information that will assist them in improving their physical and mental well-being. The MA Medicare/Medicaid Outreach and Education (MORE) Program informs Haitian elders with limited English proficiency of their eligibility for benefits and provides them with information about Medicare and Medicaid. The Program to Enhance Elder Services (PEERS) Program provides community outreach, advocacy, referral, education and support services for elders. See Haitian American Public Health Initiative > Services Program, or call 617-298-8076.

Hebrew Rehabilitation Center/Hebrew Senior Life offers long- and short-term care, senior supportive housing and services, assisted living, adult day health, a continuing care retirement community and home health care. They are also the largest provider-based geriatric research facility in the United States. See Hebrew Rehabilitation Center/Hebrew Senior Life > HSL Services, or call 617-363-8000.

Inquilinos Boriques en Accion (IBA) Elders Program provides home visits, advocacy, outreach, translation, and interpretation for low-income Latinos. Call 617- 399-1958.

Islamic Multi-Service Organization is a multi-service agency that serves Islamic families of all ages. Their programs include the "Elder Dignity Program" that links elders to critical support services. Islamic Multi-Service Organization > Our Services. Phone: 617-442-4676.

Jewish Community Housing for the Elderly builds and manages affordable, non-sectarian housing for independent elders in the Greater Boston area and provides its tenants with programs and services that are designed to enhance and facilitate healthy aging. See Jewish Community Housing for the Elderly, or call 617-912-8404.

Jewish Family and Children's Services works to help elders of all faith traditions remain independent in their own homes. They provide information, referrals and services for home care, health care, geriatric care management, as well as long-term care and guardianship issues. See Jewish Family & Children's Services > Seniors, or call 781-647-5327.

La Alianza Hispana, Inc. serves the Latino community of greater Boston, and they run a Senior Center Program that offers computer courses, a theater group, a handcrafts workshop, and other recreational activities, as well as health orientations, translation & interpretive services, transportation arrangements and hot lunches. See La Alianza Hispana, Inc., or call 617-427-7175.

Massachusetts Alliance of Portuguese Speakers (MAPS) works with Brazilian, Cape Verdean, Portuguese and other Portuguese-speaking communities. Their Elder Services include nutritious lunches, social and educational activities, access to a variety of important services; health screenings, and other activities at the Cambridge Senior Center. See MA Alliance of Portuguese Speakers > Enter > Services > Social Services, or call 617-864-7600.

MATCH-UP Interfaith Volunteers is a network of trained volunteers who provide support and companionship to elderly and disabled adults living in the Boston area. Programs include Friendly Visiting, PetPals, and the "Strong for Life" in-home exercise program. They also offer health communication workshops and respond to short-term needs for medical escorts and other kinds of short-term or one-time assistance such as de-cluttering, simple home repairs, and transportation. See MATCH-UP Interfaith Volunteers > Services, or call 617-482-1510.

Springfield Vietnamese American Civic Association offers an Asian Elder Program. Call 413-733-9373. (No website available.)

Vietnamese American Civic Association, Inc. (VACA) offers a variety of social and educational services. They collaborate with several area senior service centers, including Kit Clark Senior Services, Elder Services of the Merrimack Valley, the City of Worcester, and Mystic Valley Elder Services, offering outreach and education at those locations. They provide an Elderly Outreach Worker at the Mystic Valley Elder Services center once a week to assist Vietnamese elders. See Vietnamese American Civic Association, Inc. >What We Do: Health and Social Services, or call 617-288-7344, ext.16.

Sometimes the kind of information that caregivers need is very specific to the particular disease or set of health issues that the elder they care for is facing. Sometimes it is most helpful to be in a support group with other caregivers dealing with the same disease. The following organizations provide assistance for caregivers with these kinds of needs:

Alzheimer's Association has extensive information about Alzheimer's disease, updates on research and treatments, training for caregivers and for people with dementia, and short-term counseling. See Alzheimer's Association. The Massachusetts Alzheimer's Association also provides extensive information for caregivers on assisting persons with the disease, as well as listings of educational programs and support groups for caregivers. See Alzheimer's Association , or call toll free 1-800-272-3900

American Cancer Society provides support groups and other resources for caregivers, including a "Caregiver Discussion Board." From the home page, American Cancer Society > "Find ACS in your Community" > enter your zip code > provides address and phone number of nearest ACS office and a map.

American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. There are over 80 programs in Massachusetts. For information about caregiver support groups and other resources in your city or town, go to American Diabetes Association > In your area > enter your zip code > Find a recognized education program.

The Arthritis Foundation website offers a number of resources in both English and Spanish, from detailed information about the disease, drug treatments, and pain management, to help lines and message boards, The Arthritis Foundation. The Massachusetts Chapter is located in Newton. For information on local programs, or if you have questions not answered on the national website, call 800-766-9449 or 617-244-1800.

American Stroke Association — a division of the American Heart Association, provides outreach to stroke survivors and their caregivers through a national call center, 1-888-4-STROKE (1-888-478-7653). To reach the "Warmline" team, and the support group registry, see American Stroke Association > Life After Stroke > For Family Caregivers> Getting Support > Support Groups > more. The locator will help you find the chapter nearest you.

Compassionate Care ALS — models compassion to those affected by ALS (Lou Gehrig's disease) by providing educational and legal resources, respite opportunities, instruction and guidance, subsidy of living aids and assistance, and intimate dialogue with patients and their caregivers, families, and friends.

CC-ALS has created a set of meditation exercises available in a CD set called "Cultivating Compassion" – it is geared to people with ALS but has relevance for people facing many other life threatening diseases. Go to: Compassionate Care ALS.

COPD-Support, Inc. — provides information on organizations, support groups, and on-line meeting places for patients with emphysema, chronic bronchitis, and chronic asthma and their caregivers. COPD-Support, Inc.

The Massachusetts Chapter of the Leukemia and Lymphoma Society provides information on the diseases and both on-line and in-person group support for caregivers. MA Chapter/Leukemia & Lymphoma Society > Chapter Finder > Enter zip code, or call 1-800-688-6572 (toll free).

The National Multiple Sclerosis Society has a useful website that includes publications for caregivers. See National Multiple Sclerosis Society ,or call 1-800-344-4867. The Central New England Chapter is located in Waltham, and offers local resources for education, support, and advocacy. Call 1-800-493-9255 or go to National Multiple Sclerosis Society-MA

National Parkinson Foundation — supports Parkinson-related research, patient care, education, training, and outreach. There are now 39 affiliated Chapters of NPF throughout the United States, and the chapters work with hundreds of persons in Support Groups which are listed on their website. Go to National Parkinson Foundation > Find Resources > Caregiver Resources.

The Wellness Community — a national organization with a Boston-based chapter and office, provides support for cancer patients and their caregivers, has online and in-person support groups in Spanish and English, call 617-332-1919, or see The Wellness Community.

There are some national organizations that have information that is useful to caregivers living in Massachusetts, as well as those whose elderly relatives live out of state.

American Association of Retired Persons (AARP) has free online seminars for caregivers: "Managing Caregiving Details: The Basics" outlines common issues for caregivers and strategies for handling them; "Planning for the Care of Aging Parents" to help caregivers discuss independent living and long-term care issues with their parents; "Providing the Care" on caring for a parent who is too sick or frail to live independently. Go to American Association of Retired Persons > Learning and Technology > Family Caregivers.

Caregiver Magazine — a bi-monthly publication focused on articles about and resources for caregivers, not specific to care of the elderly, but includes many issues related to elder caregiving. See Caregiver Magazine.

Children of Aging Parents (CAPS) — Caregiver support programs for adult children caring for elderly parent(s). For MA, call 1-800-227-7294. Go to: Children of Aging Parents > support > Massachusetts support groups.

Eldercare Locator is a national database that connects older Americans and their caregivers with information on senior services throughout the United States by providing on-line links to state and local area agencies on aging and community-based organizations serving elders and their caregivers. Go to: Eldercare Locator or call 1-800-677-1116.

Family Caregiver Alliance is a California-based network that addresses the needs of families and friends providing long-term care at home. FCA offers information, education, services, research and advocacy programs at national, state and local levels to support and sustain caregivers. Their website includes information on demand on a wide range of caregiver issues Family Caregiver Alliance Also see the website for free publications and an online caregiver support discussion group, or call the toll-free number 800-445-8106.

Lotsa Helping Hands is a free, easy-to-use, online 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 a crisis with elder care and other kinds of care crises. Lotsa Helping Hands or email: support@lotsahelpinghands.com.

National Alliance for Caregiving — is an organization of national care providers. Its website provides extensive information for caregivers on how to take care of themselves while providing care. It links to "Family Caregiving 101" which provides tips and information for caregivers, see National Alliance for Caregiving.

National Association of Professional Geriatric Care Managers (GMC) — is largely an organization for health and human service professionals working with the elderly, but they also have information for caregivers. Go to National Association of Professional Geriatric Care Managers > Find a Geriatric Care Manager > type in your zip code, or city and state, to locate a care manager in your area.

National Family Caregivers Association — provides useful tips and guides for all aspects of family caregiving. National Family Caregivers Association.

U.S. Administration on Aging - Caregiver Resource Page provides links to government, non-profit and commercial caregiver websites. It also includes information and articles on topics such as Family & Medical Leave and other issues. This page links to a National Family Caregiver Support Program, Administration on Aging. Or call 202-619-0724.

Well Spouse Foundation is also known as the Well Spouse Association. It is a non-profit organization providing support and other resources to husbands, wives and partners of the chronically ill or disabled. See Well Spouse Foundation > About Us > Join a Support Group > select State, to find a support group in your city or town, or call 1-800-838-0879.

Women's Health Information Center – offers useful resources for caregivers. Go to Women's Health Information Center to read more about topics that affect women caregivers. This website is part of the U.S. Dept of Health and Human Services' Office of Women's Health. Phone 1-800-994-9662 (TDD 1-888-220-5446).