Caregivers make it possible for people with serious illnesses to stay at home surrounded by the things and people they care for. The role of caregivers is to provide help to friends or family members who may need some assistance in taking care of themselves. As such, caregivers may be involved in decision-making, problem solving, and housekeeping, as well as personal care. The complicated needs of the person being cared for, along with the emotions faced by everyone involved in the process, can be very demanding on the caregiver.

While many caregivers report a great deal of emotional satisfaction at having helped a loved one through a serious illness or the dying process, many also report negative feelings such as anger, frustration, guilt, and depression. The demands placed on caregivers can be very profound and may result in effectively removing them from other aspects of their lives. Furthermore, caregivers of a seriously ill or dying person may get so caught up in the day-to-day activities of caring for a loved one that they forget to take proper care of themselves. It is not uncommon for caregivers to miss meals, forget to take their own medications, and fail to get enough sleep or exercise. Also, the personal care needs of the seriously ill or dying person, such as moving them every few hours to prevent bedsores and helping them bathe and dress, may stretch the physical limits of the caregiver and, in the worst case, result in injury

For these reasons, it is important for caregivers of loved ones who are seriously ill or dying to ensure they have appropriate support. This support can be provided by an interdisciplinary hospice team. (See Types of Specialized Care section in this Guide.) If hospice care is not an option or is not desired by the individual or family members, home care services are also available to support the physical and medical needs of the loved one and the emotional needs of the caregiver.

In recognition of the critical role of caregivers, Congress enacted the National Family Caregivers Support Program in 2000. The Massachusetts Executive Office of Elder Affairs (EOEA) administers this program for Massachusetts residents. Those eligible for services are family members and friends who are caring for an adult 60 years or older or an adult with Alzheimer’s Disease regardless of age or grandparents and relative caregivers who themselves are 60 years or older and caring for children under age 18.

The services provided through the Massachusetts Family Caregiver Support Program include:

  • Information on and referral to services available in the area.
  • One-on-one assistance - including in-home assessments, shortterm case management and referral and resource information.
  • Training, support, and counseling – including a variety of training programs on topics such as stress management, assisting with activities of daily living (ADLs), behavior management, and financial and legal issues in elder care.
  • Respite – temporary relief from caregiving – such as in-home care, adult day care, and emergency respite.
  • Supplemental services, such as subsidies to help caregivers make one-time purchases of durable/adaptive equipment.

Many of these services are available at no or low cost to caregivers. To access these services, caregivers should contact the Aging Services Access Point (ASAP)/Area Agency on Aging (AAA) most convenient to them. The ASAPs are listed individually in the guide and also in the resources below. Additionally, caregivers can call 1-800-AGE-INFO (1-800-243-4636) or use to connect with local ASAPs.

Boston Region

Central Region

Metro Region

Northeast Region

Southeast Region

Western Region

For more information:

Caregiver.Com: Today’s Caregiver Magazine
6365 Taft Street, Suite 3003
Hollywood, Fl 33024
Phone: 954-893-0550 or 800-829-2734

This publication is a leading supplier of information, support and guidance for family and professional caregivers.

Eldercare Locator
Phone: 800-677-1116 (call Monday thru Friday - 9am to 8pm ET)

The Eldercare Locator is a public service of the U.S. Administration on Aging to assist older Americans and their caregivers in connecting with sources of information on senior services.

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Phone: 415-434-3388 or 800-445-8106

Caregiver Action Network

Drug Watch: Senior Wellness Guide

This free web resource includes information about medical conditions, side effects of dangerous drugs, and ways to take action. The Senior Wellness Guide deals with topics ranging from family caregiving, to nutrition, to preventable problems.

Long-Distance Caregiving

This website offers tips to ensure your loved ones are safe at home when you are caregiving from a distance.

Massachusetts Family Caregiver Support Program

The Massachusetts Family Caregiver Support Program offers caregivers assistance and support to ease the strain and reduce the challenges of caregiving.

National Institute on Aging

This website includes a list of resources organized by category which may be helpful in getting questions answered.

Women in the Middle: Their Parent Care Years. Brody
E. Springer Publishing Company, 2004

This book describes long-term caregiving from both a conceptual and practical perspective. It describes the effects of caregiving particularly on women from an emotional, physical and financial perspective and focuses on women's subjective experience of caregiving based on interviews with female caregivers conducted by the author.



About End With Care

End With Care Corp is a 501(c)(3), non-profit organization helping to provide end-of-life information and access to resources found
throughout Massachusetts.

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