Online Materials

This is the electronic version of the Resources Book. All the information here is up-to-date. You can download and view, or print, all of this.

Welcome to Home Health & Hospice Care

GOAL: To introduce new volunteers and hospice professionals to the full range of goals and programs in operation at Home Health & Hospice Care, and to welcome participants to the agency.

OBJECTIVES: Upon completion of this session, the Volunteer should be able to:

  • Discuss programs offered by Home Health & Hospice Care other than Hospice.
  • Recognize the Mission Statement and beliefs that are the foundation of the services offered by Home Health & Hospice Care to the community.
  • Understand the general client base and funding sources of Home Health & Hospice Care.
  • Understand the general administrative structure of the agency.



Our Roots
Home Health & Hospice Care (HHHC) has celebrated over 130 years of service in the greater Nashua Community. Our services as a Visiting Nurse Association grew out of the roots of the Good Cheer Society, which started with the “fruit and flower mission” movement in the 1880s. Read more about the Agency’s history and the Good Cheer Society.

View Home Health & Hospice Care's Mission Statement and Core Beliefs.

An Overview of HHHC

Today, Home Health & Hospice Care is a recognized 501 (c) (3) public charity, and is the largest visiting nurse and hospice agency serving southern New Hampshire. The organization serves all constituents in 35 communities stretching from Hooksett in the north to Wilton in the west, and Salem in the east. Founded in 1883 by the Good Cheer Society, HHHC has a wide array of programs benefiting the community from newborns to centenarians. The Good Cheer Society remains today as an endowed auxiliary whose fundraising efforts benefit the work of HHHC. The family is the unit of care, and the agency is dedicated to helping patients and families live independently and fully as possible, on their own terms. Our work requires excellence, and competent and caring practice standards are the hallmarks of HHHC.

HHHC is governed by a Board of Directors from the community

Referral volume is extensive and includes local and tertiary hospital systems, physician offices and referrals from the community. Key referral sources include SNHMC, St. Joseph Hospital, Catholic Medical Center, Elliot Hospital, the Dartmouth Hitchcock system statewide, Mass General, Brigham & Woman’s Hospital, Children’s Hospital, Dana Farber Center, Lowell General, Lahey Clinic, Tufts New England Medical Center, Beth Israel etc. Revenue streams for the agency include Medicare, Medicaid, third party insurers, grants and contributed income.

HHHC is divided into three strategic lines of business, employing over 300 employees. Licensed occupations include nurses, therapists, licensed nursing assistants, social workers, chaplains and physicians. The agency is also supported by over 300 volunteers from the community who supplement direct care and administrative functions. In Fiscal Year 2016, volunteers provided services to the community equaling over $360,000.

In 2000, HHHC opened the Community Hospice House in Merrimack, NH, which has 10 suites and is staffed 24/7. To date, the Community Hospice House has served the end-of-life needs of over 2000 patients and families.

Major business lines may explain the complexity of the organization and include the following:

Home Care Division serves over 4,000 individuals in a calendar year with over 35,000 visits.

  • Home care
  • IV therapy
  • Wound Care
  • Psychiatric nursing care
  • Social work services
  • Alzheimer respite program
  • Physical, occupational and speech therapy
  • Maternal child care
  • Licensed nursing assistant care for activities of daily living
  • Computerized telehealth program to monitor physiological measurement from the home

Palliative Care Division serves about 600 patients and families annually.

  • Palliative care consults to complex patients for pain control and symptom management
  • Hospice care in the home
  • Hospice care in nursing homes
  • Dementia program
  • Community Hospice House serving over 200 patients and families annually
  • Bereavement services for families and children for 1 year after the death
  • Social work services
  • Pastoral Care
  • Volunteer Services

Supportive Care Services

  • Homemaker services
  • Companion services
  • Private Duty nursing services
  • Mission Point Senior Support Services – Hudson
  • Foot clinics serving over 350 seniors monthly in 25 locations
We are proud to serve the following communities:
New Hampshire
Amherst
Auburn
Bedford
Brookline
Candia
Chester
Derry
Goffstown
Hollis
Hooksett
Hudson
Litchfield
Londonderry
Manchester
Mason
Merrimack
Milford
Mont Vernon
Nashua
New Boston
Pelham
Raymond
Salem
Wilton
Windham
Map of Home Health and Hospice Care - Service Area

Office Locations
Our Homecare and Palliative Care Divisions are located in our new office building in Merrimack. In addition, we have satellite locations in Manchester and Hudson. Our Community Hospice House is located in Merrimack.

Merrimack Office: 7 Executive Park Dr, Merrimack Get directions

Community Hospice House: 210 Naticook Rd., Merrimack Get directions

Mission Point Senior Support Services: 0 St. Eugene Way, Hudson Get directions

Hospice in Nursing Home and Assisted Living Settings
Home Health & Hospice Care provides hospice services in number of nursing home and assisted living facilities in the greater Nashua and Manchester area. View a Facilities List with contact information and directions for each location.
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Additional Links

Hospice Philosophy


GOAL: To introduce staff/volunteers to the overall philosophy of Hospice and the goal of hospice services at Home Health & Hospice Care.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Discuss the concept of Hospice, its history and philosophy.
  • Verbalize her/his own personal reasons for becoming interested in the Hospice program.




“When medical science can no longer add more days to life,

hospice care can add more life to each day.”


History of Hospice
The concept of hospice originally comes from the Middle Ages, when hospices would provide refuge for travelers, many of whom were sick or dying. In the 20th century, hospice began to be re-envisioned in the framework of our modern and medically-advanced society as a way to compassionately care for people who were terminally ill. The modern hospice movement began in the 1960s and over the next couple of decades had four important pioneers contributing to its formation:

Cicely Saunders - Cicely Saunders began working as a Registered Nurse and Medical Social Worker in England. Through her early work, she formed a relationship with a young Polish refugee who was dying, and as a result of that experience began to develop thoughts about how dying people were cared for. She believed that pain and symptoms should be well-managed, that dying people should have an opportunity to process their fears and concerns, and that their families should be supported. To learn more about the experience of dying people, she began volunteering at St. Luke’s Home for the Dying Poor and decided simultaneously to go back to school and become a physician so that she could have a broader impact in her work. In 1964, she opened St. Christopher’s Hospice in London, which became the first modern hospice. St. Christopher’s served as a model for others around the world to learn from. Among many concepts that Saunders researched and taught is the concept of “total pain” – encompassing physical, emotional, spiritual, social and even financial aspects of a person’s suffering – and an integrated approach for treating the whole person.

Elisabeth Kubler-Ross – Dr. Elisabeth Kubler-Ross was a Swiss psychiatrist working in the United States in the 1960s. She began studying our societal relationship with death and dying. She set out to find dying people in a hospital in Chicago so that she could interview them and better understand their experience. As she went from floor to floor of the hospital, she was repeatedly told by staff that they had no one dying there. This launched her work documenting a broad societal disconnect with death and dying, and the subsequent inability to support dying people in their process. By truly listening to people who were dying, she tried to become a spokesperson for their experiences. She described the profound sense of isolation and solitude that the medical establishment was imposing and began to teach medical, nursing and theology students a new way to work with the dying. She was a catalyst worldwide to sensitizing people to the experience of dying. She is most well known for her groundbreaking book On Death and Dying, which was published in 1969, in which she identified and described five stages of grief: denial, anger, depression, bargaining and acceptance.

Florence Wald – Florence Wald was a Registered Nurse working as the Dean of Nursing at Yale Medical School when she became interested in the work that Dr. Cicely Saunders was doing in England. After spending some time with Saunders at St. Christopher’s, she came back to the United States to begin developing the concept of hospice here. She began from the nurse’s perspective, but then expanded to model the interdisciplinary approach we know in hospice today, bringing together nurses, doctors, social workers and bereavement professionals in her work with the dying. In 1971, she spearheaded the creation of Hospice, Inc, in Connecticut and began offering hospice services in homes, hospitals and nursing homes. In 1981, the first hospice house opened in the U.S., also in Connecticut.

Balfour Mount – Balfour Mount was a Canadian physician at the Royal Victoria Hospital in Montreal. He first read Kubler-Ross’ book On Death and Dying in the early 1970s and subsequently contacted Dr. Cicely Saunders. In 1973, he went to London to study the workings of St. Christopher’s Hospice. He came back inspired to implement care of the dying in Canada. He chose the term Palliative Care (“palliative” meaning “to improve the quality of”) and created the first Palliative Care Unit, integrating hospice care into a hospital setting. He helped to advance the concept of integrated, whole person care. He also taught extensively about quality of life and how to optimize it.

Modern Hospice Care
Here is some basic information about how hospice care works in the U.S. today:

Hospice is a philosophy of caring for those living with a life-threatening illness.
The hospice philosophy holds that end-of-life care should emphasize quality of life. Hospice neither prolongs life nor hastens death. The object is to treat the whole person, and not just the disease. The hospice philosophy focuses on patient/family-centered care that addresses the physical, spiritual, emotional, and practical needs of the patient. An interdisciplinary team of health care professionals works with the patient and family to design and implement a plan of care unique to the patient’s diagnosis and needs. In addition, hospice provides all medications, services, and equipment related to the terminal illness. Hospice care continues after the patient’s death by offering bereavement services for the family and loved ones for a minimum of 13 months. Learn more about hospice philosophy.

Hospice cares for people where they live.
Hospice services can be provided in a variety of environments, including homes, assisted living facilities, nursing homes, in-patient hospice facilities (such as our Community Hospice House), and hospitals. A recent Gallup poll found that nine out of 10 Americans, if faced with a terminal illness, would want to remain in their homes and receive the services that hospice provides. Currently, more than 80 percent of hospice care in the U.S. is provided in the home. In 2007, a total of more than 1.3 million dying Americans received care from hospice providers throughout the nation, and that number continues to rise. Learn more about hospice care in a nursing home environment.

Hospice is a Medicare benefit.
Congress originally established the Medicare Hospice Benefit in 1983 to ensure that all Medicare beneficiaries could access high-quality end-of-life care. For those who do not have access to Medicare, most states offer a Medicaid Hospice benefit. (New Hampshire became the 2nd to the last state in the nation to adopt a Medicaid Hospice benefit in July 2010.) Some hospice services are also reimbursed through private insurance. However, the vast majority, over 80% of patients, are Medicare beneficiaries. Learn more about the Medicare Hospice Benefit.

Hospice care is reimbursed on a per diem basis.
The Medicare reimbursement for hospice care is a set rate per day. There are four hospice rates, each linked to one of the four levels of hospice care: routine home care, general inpatient care, respite care, and continuous care. Learn more about hospice levels of care.

Hospice care is not limited to cancer patients.
Hospices now care for over half of all Americans who die from cancer and a growing number of patients with other chronic, life threatening illnesses, such as end-stage heart or lung disease, or dementia.

Palliative Care
Hospice is one example of Palliative Care, but people who are not yet eligible for hospice may access Palliative Care in other ways. Access the Palliative Medicine intro we viewed in class. If you know someone who is struggling with pain or symptom issues, or having difficulty making choices in relation to advanced illness management, suggest that they consider requesting a "palliative care consult". You can also share this article that helps to describe palliative care.
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Additional Links

Recommended Library Resources

  • Video: Pioneers of Hospice: Changing the Face of Dying
  • Book: On Death and Dying by Elisabeth Kubler-Ross
  • Book: Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. available to read online

The Hospice Team


GOAL: To explain the structure and function of the Hospice Interdisciplinary Team (IDT) in delivering care to patients and their families.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Discuss the members of the hospice team.
  • Identify the patient and family as the unit of care and understand that each hospice plan of care is individualized to their needs.
  • Verbalize the basic responsibilities of the hospice team in serving the patient and family as defined by Medicare.
  • Be familiar with the ways in which all team members work together to achieve the patient’s/family’s goals.


Structure of the Hospice Team
The hospice team is made up of individuals representing a variety of disciplines. This range of expertise and perspectives allows the hospice team to provide an integrated, whole-person approach to care.



Role of the Hospice Volunteer


GOAL: To explain the role of the volunteer within the Hospice Team.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Understand how volunteer referrals are made and list a variety of assignments that volunteers might be given.
  • Know the types of information that need to be shared back to the hospice team, and identify the process for reporting volunteer visits.
  • Be familiar with volunteer policies and guidelines.
  • Complete the required elements for his/her volunteer file.


Hospice Volunteer Job Description

Specific Responsibilities (Essential Functions):

  • Maintain contact with patient and family through visits and phone calls.
  • Provide emotional support to the patient and family through active listening.
  • Help eliminate the feeling of isolation by providing companionship when needed.
  • Assist the Hospice Interdisciplinary Team (IDT) in identifying the needs of the patient and the family.
  • Assist with recreational needs and/or social activity.
  • As indicated by the IDT care plan, may assist with personal care.
  • Provide respite time for the family.
  • Facilitate home care by providing supportive services such as shopping and necessary transportation.
  • Observe changes in the patient or family and report these to the Volunteer Coordinator.
  • Participate in Interdisciplinary Team (IDT) meetings.
  • Document patient/family contacts, and record information in accordance with agency policy.
  • Maintain patient and family confidentiality at all times.
  • May support the family through the bereavement period, by attending services, making follow-up calls to survivors, and referring family members with special needs to appropriate Interdisciplinary Team members.
  • May assist Hospice staff with bereavement visits and co-facilitate bereavement support groups under the guidance of the Bereavement Coordinator.
  • May provide spiritual care visits and phone calls under the guidance of the Spiritual Care Coordinator.
  • May assist Hospice staff in community education and Hospice promotion.
  • Perform other functions as may be assigned.

Volunteer Policies and Guidelines

Volunteers are required to be familiar with the Volunteer Policies and Practices. These are important policies to know. In addition, please follow these general guidelines at all times:

  • Remember that you represent Home Health & Hospice Care. Your courteousness and respectful approach to visits will make a difference!
  • Remember CONFIDENTIALITY at all times – please discuss your clients and their situations with other volunteers and staff members of Home Health & Hospice Care. Do not discuss client names, addresses or details with friends and family members.
  • Your observations and concerns about clients are important and can help Home Health & Hospice Care provide better care. Please leave a brief message for the Volunteer Manager after each visit describing your activities – 603-557-2806, or email [email protected].
  • Please document your volunteer visits. You may either complete the paper form on a monthly basis, or use the web-based activity report to record your visit immediately. Immediate concerns that need to be discussed with the Volunteer Manager or another member of the hospice team can be called in at any time at 603-424-3822.
  • Encourage clients to call the Volunteer Manager with any concerns about volunteer visits or type of service needed.
  • Do not give out your home phone number.
  • Do not accept gifts from clients or provide gifts. Please call the Volunteer Manager if this becomes an issue. This is common and can feel uncomfortable to handle gracefully.
  • Help preserve our standards for infection prevention by always washing your hands before and after providing any cleaning or food preparation services. Many of our clients are more susceptible to infection due to age or illness.
  • Please accept our gratitude and all client compliments! Know that your time and caring is a gift to our clients and your community.

Volunteer Restrictions

While volunteers help in a lot of capacities, there are a few things that volunteers can never do, and other things that should only be done with hospice staff guidance:

  • Volunteers may never handle or administer medication in any setting.
  • Volunteers may never feed patients in a facility environment, including nursing homes and the Community Hospice House. (This is a New Hampshire state regulation.) Volunteers may assist with meal preparation.
  • Occasionally volunteers may be given permission to assist feeding a patient in the home. This should not be done without prior approval. Feeding a patient may put them at risk for choking, so our hospice team would need to identify that it is safe before you would be asked to feed someone.
  • Volunteers should not lift patients. In the Community Hospice House, volunteers may assist in repositioning a patient under the direct supervision of a hospice nurse or LNA.
  • Volunteers do not typically participate in personal care. If you are providing respite care, you may occasionally be asked to accompany a patient to the bathroom for safety in walking, but the patient should be able to toilet his/herself.
  • Often patients’ needs change as their disease progresses. If a patient for whom you are providing respite develops needs beyond those appropriate in your role, please let the volunteer manager know immediately so that we can reassess the situation and make changes as appropriate.

When in doubt or you have questions, call the agency. You are never alone in an assignment. Even if it is after hours, there is always a nurse on call, an administrator on call, and the Volunteer Manager available by cell phone.

Volunteer Reporting

You will be required to report your hospice volunteer activity. You may use the paper form to report activity monthly. Just click here to view and print the report, then fill it out and mail it to Tanya Prather at HHHC, 7 Executive Park Drive, Merrimack, NH 03054. You may also choose to do your report online by clicking on the "Activity Report" tab at the top of this page.

Volunteer File

As part of our Medicare regulatory obligation, you will be required to have an active volunteer file with Home Health & Hospice Care. Learn more about your file.

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Additional Links

Recommended Library Resources

  • Book: Friend of the Family: A Hospice Volunteer's Experience by Sally Lebowitz
  • Book: Your Gift by Sharon Olson

Infection Control and Corporate Compliance Issues


GOAL: To understand Infection Control and explain Corporate Compliance issues as they relate to the Volunteer job description.

OBJECTIVES: Upon completion of this session, the Volunteer will:

  • Understand the Volunteer job description as it relates to limits of care.
  • Understand the role of Infection Control in Home Care.
  • Be aware of the infection control policy and universal precautions.
  • Describe potential risk of exposure to tuberculosis and reason for initial screening.
  • Demonstrate proper hand washing technique.
  • Understand Home Health & Hospice Care’s Standards of Conduct as they relate to Corporate Compliance.



Universal Precautions
"Universal precautions," as defined by Centers for Disease Control and Prevention (CDC), are a set of precautions designed to prevent transmission of human immunodeficiency virus (HIV), hepatitis B virus (HBV), and other bloodborne pathogens when providing first aid or health care. Under universal precautions, blood and certain body fluids of all patients are considered potentially infectious for HIV, HBV and other bloodborne pathogens.

To read more details, visit the CDC website.

The Importance of Hand Washing
According to the United States Department of Health and Human Services Centers for Disease Control and Prevention, hand washing or use of alcohol-based hand rubs has been shown to reduce overall infection rates.

As an alternative to traditional hand washing with soap and water, the Centers for Disease Control is recommending the use of waterless (alcohol-based) hand rubs by healthcare professionals for hand hygiene.

Wash your hands with plain soap and water; or with antimicrobial soap and water if:

  • your hands are visibly soiled (dirty)
  • hands are visibly contaminated with blood or body fluids
  • before eating
  • after using the restroom
  • wash all surfaces thoroughly -- fingers, between fingers, palms, wrists, back of hands

Use a waterless hand-rub for routinely cleaning your hands:

  • before having direct contact with patients
  • after having direct contact with a patient’s skin
  • after having contact with body fluids, wounds or broken skin
  • after touching equipment or furniture near the patient
  • after removing gloves
  • Do not use an waterless hand-rub when hands are visibly soiled or contaminated with blood or body fluids.

According to the Center for Disease Control, waterless hand rubs significantly reduce the number of microorganisms on skin, are fast acting and cause less skin irritation. When using waterless (alcohol-based) rubs, apply product to the palm of one hand and rub hands together, covering all surfaces of hands and fingers, until hands are dry. Waterless hand rubs are well suited for hygienic hand disinfection for the following reasons:

  • optimal antimicrobial spectrum (active against all bacteria and most clinically important viruses, yeasts, and fungi)
  • no wash basin necessary for use and easy availability at bedside
  • no microbial contamination of health-care workers' clothing
  • rapidity of action.

More than 20 published studies prove alcohol-based hand rubs are more effective than soap in reducing the number of bacteria on hands. Waterless hand rubs contain skin conditioners (emollients) that help prevent drying effects. Nurses who routinely cleaned their hands between patients by using a modern alcohol-based hand rub had less skin irritation and dryness than nurses who washed their hands with soap and water.

This information on handwashing was provided by St. Mary Medical Center, Langhorne, PA. Read the rest of the article to learn more about handwashing effectiveness and multi-drug resistant infections such as MRSA.

Standards of Conduct
The Standards of Conduct are the ethical principles of the agency. They help to ensure that we maintain compliance for all of our various regulatory standards.

The staff of Home Health & Hospice Care are committed to providing quality, comprehensive health care to all clients. We are committed to supporting our mission and beliefs in our daily work performance. The Standards of Conduct have been drafted to guide employees in adhering to HHHC values during employment. The Standards of Conduct reflect policies HHHC has addressed to meet ethical and legal compliance. All employees and volunteers are expected to perform their duties honestly, responsibly, and in conformity with the Standards of Conduct. All employees are responsible for reporting any violations of these Standards to the Corporate Compliance Officer. Violations of the Standards of Conduct will lead to disciplinary action, suspension, or termination from employment at HHHC.

As part of your volunteer file, you commit to follow these standards of conduct:

Quality Care
  • I am committed to providing patients and families with high quality care. I will not discriminate based on disability, race, color, religion, sexual orientation, age, or marital status.
  • I am responsible for informing clients of their rights and responsibilities. I will support them in evaluating their care.
  • I am responsible for protecting each client’s right of confidentiality in medical records and information.

Fiscal Responsibilities

  • I am committed to maintaining honesty in all billing and documentation activities.
  • I will never falsify any billing or medical record information.
  • I am committed to providing accurate information about services in all marketing and public information statements.

Laws and Regulations

  • I am committed to observing laws, regulations, and professional standards that govern Home Health Care Agencies. (e.g.: IRS, Medicare, OSHA and HIPAA).
  • I understand fraud, abuse, theft, bribes, and kickbacks are examples of violations of law and will not be tolerated.
  • I will work together with other provider agencies to collaborate honestly to meet health care need of patients effectively.

Human Resources

  • I am committed to HHHC being an equal opportunity employer for all staff and will not participate in any discrimination or harassment.
  • I am responsible for my ongoing professional competence through continuing education.
  • I am responsible for seeking guidance regarding any conflict of interest or loyalty that I recognize.

Safe Work Environment

  • I am committed to an alcohol, drug, and violence free work environment.
  • I will follow risk management policies on reporting injuries.
  • I am committed to protecting agency and clients’ property.

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Additional Links

Recommended Library Resources

  • Video: The Home Care Companion, Volume 3: Creating healthy home care conditions: Infection Control

HIPAA & Confidentiality


GOAL: To understand the volunteer’s responsibility as it relates to HIPAA and confidentiality.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Identify HIPAA as federal legislation enacted which helps to protect an individual’s medical record.
  • Understand how HIPAA guides the use of Personal Health Information (PHI) as it relates to Treatment, Payment, and Healthcare Operations (TPO).
  • Verbalize the need to uphold patient confidentiality at all times.



Understanding HIPAA
HIPAA stands for Health Insurance Portability and Accountability Act. It is federal legislation which was passed in 1996 to establish national standards for electronic health care transactions and to address the security and privacy of health data. HIPAA is meant to improve the efficiency and effectiveness of the nation's health care system. Learn more about HIPAA.

HIPAA Privacy Practices
As part of HIPAA, each healthcare provider is obligated to provide a copy of its Privacy Practices to its clients. This document outlines how the healthcare provider uses the patient’s Personal Healthcare Information (PHI).

  • The philosophy behind HIPAA’s privacy policy is that healthcare information belongs to the individual. It is the responsibility of the healthcare provider to safeguard that information.
  • HIPAA allows for health information to be used for Treatment, Payment, and Healthcare Operations (TPO).
  • The “Need to Know” rule under HIPAA defines that information should only be shared with those who need to know it to enable Treatment, Payment or Healthcare Operations. Because volunteer services are part of a patient’s care plan, HHHC may share health information with you under the category of Treatment.
  • The “Minimum Necessary” rule under HIPAA states that in any situation we should share the minimum amount of information necessary to accomplish the needed task. As a volunteer, you are given the information necessary to fulfill your assignment, but you do not know everything about the patient’s record.

Please take time to review the Privacy Practice that is given to new Home Health & Hospice Care clients upon admission.

HHHC HIPAA Policy
I understand that I am responsible for complying with the privacy and security standards relating to HIPAA. The notice of proper practice and related articles were provided to me. I will treat all information received in the course of my employment with HHHC, which relates to the patients of the Agency, as confidential and privileged information. I will not access patient information in either print or electronic format unless I have a need to know this information in order to perform my job. I will not disclose information regarding the Agency’s patients to any person or entity other than as necessary to perform my job and as permitted under the HIPAA policies.

Guidelines for Safeguarding Information
As a volunteer, you can help safeguard patient information by being aware of how it is shared.

  • If you are talking about a patient (on the phone or in person), be aware of who might be around to overhear your conversation.
  • HHHC’s telephone voicemail system is a secure system. You may leave detailed patient information on the voicemail line of the Volunteer Coordinator or another hospice team member.
  • Your voicemail (home, work or cellphone) is not considered “secure”, so the volunteer coordinator will not leave patient information in a message for you. You will be asked to call back for more information.
  • The Internet is also not a “secure” environment, so patient information may not be shared in email. However, you may email updates to the volunteer coordinator that do not include any identifying information, i.e. “The patient I visit on Thursdays…”
  • If you are working in the Community Hospice House or any other environment, be careful not to leave written information out where it might be seen by others.
  • Safeguard any information you write down regarding your assignment. When the assignment is complete, please bring the information in to HHHC to be shredded.

Confidentiality
Patient/client confidentiality is critical to the work at HHHC and must be respected at all times. Patient/client information should never be casually or informally shared with anyone inside or outside HHHC. Patient/client records must be kept secured and locked unless being used by staff or a "home chart" has been instituted. Needed information should only be shared to:

  • Ensure an effective and appropriate care plan is formulated, updated, and carried out by the care team. This team is comprised of HHHC staff directly involved in the patient's care, including "on call" and supervisory staff, the patient's physician, and may include outside providers.
  • Ensure patient/client and staff safety. When there is a potential threat to the welfare of a patient/client, or others, or a question of abuse, Agency policy and legal regulations will be followed.
  • Ensure that proper billing and reimbursement occurs.
  • Ensure that the Agency’s standards of quality and risk management are maintained.
    Referral information outside the care team may be made only with the patient/client's prior written permission.

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Additional Links

Body Mechanics & Safety

Body Mechanics

Body mechanics refers to the way we move during every day activities. Good body mechanics may be able to prevent or correct problems with posture (the way you stand, sit, or lie.) Good body mechanics may also protect your body, especially your back, from pain and injury. Using good body mechanics is important for everyone.

Physical Therapist Kevin Lockette has created a helpful resource guide called A Caregiver's Complete Guide for Safe Mobility & Independence in the Home. This entire manual is generously shared on our HHHC volunteer website with Kevin's permission. Though volunteers are not generally tasked with personal care, this provides a very useful frame of reference.

How a home environment is set up can help eliminate safety hazards and avoid injuries for both you and the patient. The Caregivers at Home guide has some useful safety tips.

General Visit Safety

When you receive a volunteer assignment, other members of the hospice team have already visited the patient and family and assessed the needs, as well as the safety of the environment. HHHC would never knowingly send you to an environment that is unsafe. When doing home visits, though, things can sometimes be unpredictable and it makes sense to take some general precautions:

  • Lock personal items in the trunk
  • Dress conservatively
  • Do not wear a lot of jewelry
  • Park in well-lit areas
  • Keep keys and cell phone handy
  • Be alert to surroundings
  • Watch for any slip or trip hazards
  • Wash hands/use hand sanitizer

If there is a pet in the home, it is HHHC’s policy that you may ask that the pet be put in a closed room during your visit.

There should be no weapons in the home. If you observe weapons, drug paraphernalia (unrelated to hospice meds), or any activity that makes you uncomfortable or appears suspicious, report it immediately to the agency.

If you have any reason to suspect abuse or neglect, report it immediately. A hospice supervisor will explore your concerns. HHHC is a mandatory reporter, meaning that if we agree that there is concern of abuse or neglect, we are required to report it to the Division of Elderly and Adult Services (DEAS). A hospice staff member would manage that process.

Above all, when doing home visits, trust your instinct -- if something does not feel right, it probably isn't. Try to figure out why and what your response should be. Be calm and confident. If you feel any threat or danger to your safety, leave the home immediately.

HHHC has staff available 24 hours to support you. If it is after hours, you can call the agency main number (882-2941) and a hospice administrator will be paged.

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Additional Links

Recommended Library Resources

  • Book: Caregivers Complete Guide for Safe Mobility & Independence in the Home by Kevin F Lockette, PT
  • Book: Caregiving at Home by William Leahy, MD and the Ecitors of Hartman Publishing
  • Video: Transfer Training & Mobility Skills for Caregivers

Family Dynamics & Limit Setting


GOAL: To help Participants become more aware of the impact of serious illness on the family and how the family copes under stress.

OBJECTIVES: Upon completion of this session, the participant should:

  • Have a better understanding of what is meant by the family system.
  • Be aware of the possible impact a volunteer or staff member has on the family system and how a volunteer/staff member may become part of that system.
  • Understand the need for setting limitations and establishing boundaries in relationships with patients and families.
  • Be aware of common ways that families cope.
  • Understand the Volunteer/staff member role in the dysfunctional family.
  • Be familiar with the signs of abuse and neglect in families and the procedures for handling such situations.



Boundaries help to keep us safe. As humans, we have both physical and psychological boundaries. When volunteering, it is worthwhile to think about your personal boundaries before you begin working with patients and families. Maintaining professional boundaries and setting appropriate limits is a challenge for all caregivers. Self-awareness and a willingness to reach out for supervision are two things that will help you to negotiate challenges with boundaries.

Hospice Volunteers - 3 Guidelines for Good Decision-Making

  • Is this meeting my need or the patient's/family's need?
  • Am I action with my defined role?
  • Am I using my Team effectively? (Is there someone else on the Hospice Team who should be involved in addressing this?)

Often patients and families are not looking for you to fix thier current situation, but for you to be present, listen, and acknowledge what they are going through.

Understanding Family Systems
Here is a table comparing open and closed family systems.

Signs and Symptoms of Over-Involvement
Click here to read a one page description of the symptoms of over-involvement.

Tips for avoiding "Fix It Syndrome"

  • Let go. Let go of that fix it mentality. Set it free. Be the very best you can be. Know that the service you are providing is magic. Know its appreciated even if the person never says thank you.
  • Define your role. Your role is not to fix what's wrong. Your role is to advocate for someone who can no longer do it themself. You role is to keep someone safe, and clean and well-cared for.
  • rust in yourself. Trust that you are enough. You are perfect just as you are. Accept you are good enough and what you are doing has true value.
  • our job is not to fix what's wrong. You can't fix someone who is ill or has a chronic illness. Get out of the "fix it mentality" and get into the "I'm enough" state of mind. Today I will do what I can do.

Click here to read “The Fix It Mentality and How It Leads to Caregiver Burnout” by Cindy Laverty

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Additional Links

Recommended Library Resources

  • Video: The Gift of Time (DVD)

Communication

GOAL: The purpose of this session is to develop an awareness of the various ways in which we listen to our own needs and those of others. To introduce creative listening skills that will enable the staff/ volunteer to respond effectively to the needs of the dying person and their family members.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • List the basic elements of listening.
  • Demonstrate communication skills of active listening through exercise.
  • Discuss non-verbal communication.
  • Have a basic understanding of how to set appropriate boundaries with the patient/family through verbal and non-verbal communication.
  • Outline the difference between her or his needs and those of another person, i.e. volunteer, professional, dying person or family of client.


Recommended Library Resources

  • Book: The Four Things That Matter Most by Ira Byock
  • Book: The Death of Ivan Ilyich by by Leo Tolstoy
  • Video, VHS: Begin with Goodbye: The Death of Ivan Ilyich
  • Video, DVD: Communicating with Compassion, Adventures in Caring
  • Video, VHS: Communication: Developing Cultural Competence, Healing Arts Communications

Closure Issues


GOAL: To explore issues of closure in patient care relationships.

OBJECTIVES: Upon completion of this session, the participant should:

  • Be familiar with issues of closure in patient care.
  • Understand the need for clarity of the Volunteer’s role with the patient and his or her family.
  • Be familiar with resources available to support all parties involved with closure issues in the patient’s care.


Emotional Issues at End of Life


GOAL: To consciously begin the process of facing one’s own death and to explore the feelings about this event.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Discuss her or his own attitudes toward an “unfinished life”.
  • Share her or his attitudes, feelings, and death acceptance level with her or his peers.
  • Identify the “Kubler-Ross” stages toward death and dying.
  • Explore the differences in how people cope.
  • Explore the desire to die.


Dr. Elisabeth Kubler-Ross helped to frame how we think about the emotional journey of a dying person in her famous book On Death and Dying. She found that although many terminally ill patients were eager to discuss their feelings and learn the truth of their condition, doctors often instructed family members to avoid such discussions, resulting in isolation and grief for both the patients and their families.

Kubler-Ross proposed that a dying person goes through five emotional stages:

  • stage 1: Denial
  • stage 2: Anger
  • stage 3: Bargaining
  • stage 4: Depression
  • stage 5: Acceptance

While these stages provide a framework for emotional issues, it is important to acknowledge that the stages do not necessarily happen in order, and that not every person experiences every stage. Each person's emotional journey is unique. The age of the dying person, the nature of their illness, and the cultural and social context will impact emotional issues at end of life.

This emotional issues worksheet that we use in the hospice training is valuable in thinking about your own identity, wishes and values. This is a tool that you might revisit every year or so to "check in" with yourself.

Additional Links

Recommended Library Resources

  • Video, DVD, VHS: At Death’s Door by Paraclete Productions
  • Book: On Death & Dying by Elisabeth Kubler Ross
  • Book: Dying Well: Peace and Possibilities at the End of Life by Ira Byock
  • Book: Facing Death and Finding Hope: A Guide to the Emotional and Spiritual Care of the Dying by Christine Longaker
  • Book & Audio cassette: A Year to Live by Steven Levine
  • Book: Too Soon to Say Goodbye by Art Buchwald
  • Book: The Last Lecture by Randy Pausch
  • Video, VHS: On Our Own Terms, a 4-part series with Bill Moyers

Spiritual Issues at End of Life


GOAL: To explore the meaning of spiritual care in Hospice and how each caregiver can nurture spiritual well-being in the midst of death and grief.

OBJECTIVES: Upon completion of this session, the participant should be able to:

  • Identify basic spiritual needs for all persons and understand the impact of life-threatening illness on meeting those needs.
  • Identify one’s own spiritual values and/or needs including concerns about the staff/volunteer’s role in spiritual care.
  • Develop an appreciation of various religious traditions concerning death and dying.
  • Discuss the role of the Hospice Spiritual Care Coordinator with patients and families as part of the Hospice Team.



Spiritual Care

Because Hospice seeks to meet the needs of the whole person, the spiritual life of each patient is taken seriously. The Spiritual Care Coordinator is part of the Hospice Interdisciplinary Team and has input to the plan of care for each Hospice patient. The goal of Spiritual Care is to assess the patients and their families and to address their spiritual/religious needs in the midst of a healthcare crisis. Often it can be a source of comfort and strength. The Spiritual Care Coordinator is also available to all members of the Interdisciplinary Team for consultation and support.

Direct spiritual support by the coordinator is available to the patient and family as requested. Assistance can also be provided in connecting or reconnecting with a particular faith community. Support to the family in the time of bereavement and assistance in planning and conducting memorial services is available.

The Spiritual Care Coordinator plans with the Hospice Team what intervention may be helpful to the patient. He/she also writes in the patient’s charts insights and concerns regarding the patient’s spiritual well-being to the healthcare team. Often this helps in consultations and referrals from other Interdisciplinary Team members that provide for better quality patient care.

Basic Spiritual Needs for All Persons

  • To develop a growing relationship with a transcendent meaning that integrates the fundamental aspects of human life. To develop a viable philosophy of life or a belief system that gives life value and guides a person’s actions throughout life.
  • To continually renew a sense of basic trust in the essential goodness of life.
  • To maintain hope in the face of human limitations and finitude and in the midst of the losses and tragedies of life.
  • To discover ways to move from alienation, shame and guilt to forgiveness and reconciliation.
  • To develop ways to undergird self-esteem.
  • To be able to look at the self and to take responsibility for what one sees.
  • To belong to a caring community. To love and to have someone or something to love. To take responsibility for shaping a community of justice and compassion.
  • To experience moments of joy and celebration, to share in the experiences of sorrow and pain. .
  • To develop an awareness of the spiritual resources in one’s life and to find ways to draw on them.
  • To find courage to face the challenges of new life experiences.
  • To face the issue of death; to come to terms with one’s own mortality and to ask the question, “In the face of my own death, what meaning do the days I have left hold?”

Spiritual Needs of the Dying

  • To think through regrets
  • Reassurance regarding
  • Shared faith in God in the presence of death
  • To have despair stamped from the mind
  • To have deepest desires expressed
  • To have loneliness assuaged

Four Spiritual Searches of the Dying Person

  1. Identity – “Who am I?” Tell life story.
  2. Meaning – Events do not simply “happen to us”. We bring who we are to them to help shape them.
  3. Reconciliation – “In the beginning was the relationship.” (Martin Buber)
  4. Transcendence – “Where is my destiny?”

Guidelines for Helping Persons Experience Their Own Spirituality

How can you as a volunteer be a supportive presence to the people you sit with who are exploring their spirituality? Read more with this resource, Guidelines for Helping Persons Experience Their Own Spirituality.

Three Levels/Means of Spiritual Support

Care of the spirit is as important as care of the body. Spiritual support includes compassionate care, loving concern, and religious practices, and sense of direct relationship with God.

  1. Draw strength from God/ higher power/ Spirit world/ divine presence.
  2. Strength generated by prayer, spiritual disciplines or practices, seeking answers to questions of meaning.
  3. Caring relationships offer strength – friendship, acts of kindness, sharing, presence, open discussion of death, God, afterlife.

Spiritual Care Involves:

  1. Respect beliefs of patient/family.
  2. Be willing to discuss spiritual concerns.
  3. Explore questions of meaning.
  4. Make available rituals, sacraments, practices.
  5. Support efforts of person to make peace with self, others, God.
  6. Let person know they are loved.

The Difference Between Helping and Serving

Read Rachel Naomi Remen's article In the Service of Life.

Spiritual Self-Assessment

Use this tool for your own Spiritual Self-Assessment.

Assumptions and Principles of Spiritual Care

Click here to view the assumptions and principles of spiritual care as developed by the Spiritual Care Work Group of the International Work Group on Death, Dying and Bereavement.

A Bibliography for Additional Resources on Spiritual Care

Additional Links

Recommended Library Resources

  • Book: Kitchen Table Wisdom: Stories That Heal by Rachel Naomi Remen, MD

Characteristics of the Dying Process & Overview of Symptom Management


GOAL: To provide staff/volunteers with basic knowledge of pain and symptom management as well as ways to recognize signs of the dying process to support their work with the patient and family.

OBJECTIVES: Upon completion of this session, the participant should:

  • Understand what is meant by palliative care.
  • Understand pain as being subjective and unique to each person.
  • Be aware of common drugs to control cancer pain
  • Be aware of possible non-drug treatments to enhance pain and symptom control.
  • Understand that proper pain and symptom control gives the patient control and dispels feelings of helplessness and hopelessness.
  • Recognize that proper pain and symptom control can facilitate meaningful growth for patients and their families.
  • Be able to identify some signs of impending death.


Additional Links

Complementary Therapies: Music, Art, Reiki, Pets

Complementary modalities provide an opportunity to connect with patients on multiple levels. While they have physical benefits, they also have the potential to provide growth and healing emotionally and spiritually.

See how complementary therapies can support hospice care.

Music

HHHC utilizes CMPs (Certified Music Practitioners) to provide Music at the Bedside for hospice patients. CMPs become certified after completing a program called Music for Healing and Transition, available locally. For more information, contact Alice Kinsler [email protected] Concord.

HHHC also has a hospice chorus called the Wellspring Hospice Singers. Although the group is close to 30 members total, they sing in small groups (4-8) at the bedside. Wellspring has a wide repertoire and customizes the music offered to the person for whom they are singing.

  • See how music can benefit people with Alzheimer’s. Music and Memory
  • Visit The Music for Healing and Transitions Program's Website

    Art

    HHHC has volunteers trained as therapeutic artists. These artists represent a variety of media, from painting and writing to collage and jewelry-making. Artists work with both children and adults, and often support our bereavement programs as well.

    Reiki

    Reiki is a non-invasive energy therapy that many people find offers comfort and an overall sense of relaxation and well-being. HHHC's group of Reiki practitioners is called the Compassionate Touch Team. Reiki can be offered by volunteers to both patients and family members or caregivers.

    There are two Reiki Masters in the Nashua Area who have supported our organization, Libby Barnett and Yvonne Dunetz. Both provide special offers to HHHC staff and volunteers who would like to become Reiki-certified.

    Libby Barnett is located in Wilton, NH. To see more information about her offerings, click here, call 603-654-2787, or email [email protected].

    Yvonne Dunetz's office is located in Nashua, NH. You can find out current Reiki training information by calling 604-886-4200.

    Pet Therapy

    Get a sense of pet therapy in a hospice setting by watching this video: Moments with Baxter.

    View the HHHC Pet Therapy Flyer.

    HHHC partners with an outside organization called Pet Partners (formerly the Delta Society) to assure that the pet teams who visit our patients and families are appropriate to work in that environment. Pet Partners provides training and certification programs. HHHC is fortunate to have a volunteer who is also a Pet Partners Trainer and Evaluator, making these resources readily accessible to new teams interested in becoming certified. View HHHC's Pet Therapy Presentation. Learn more about the evaluation process that new teams go through to become certified.

    Additional Links

    • To learn more about Therapy Pets, visit Pet Partners.
    • Mulholland Presentation: Music Therapy in Hospice and Palliative Care click here
    • Mulholland Presentation: Music Therapy in Hospice and Palliative Care - Bibliography click here

    Recommended Library Resources

    • Book: Moments With Baxter: Comfort and Love from the World's Best Therapy Dog, by Melissa Joseph
    • Book: Hospice Hounds: Animals & Healing at the Borders of Death, by Michelle Rivera
    • Book: Standards of Practice: Animal-Assisted Therapy, Delta Society
    • Book: Reiki: Energy Medicine, by Libby Barnett & Maggie Chambers
    • Book: Beginner's Guide to Reiki: Mastering the Healing Touch, by David Vennells
    • Book: Peace, Love & Healing: Bodymind Communication & the Path to Self-Healing, by Bernie Siegel
    • DVD: Holding Our Own: Embracing the End of Life
  • Legal Issues & Advance Care Planning


    GOAL: To explore the legal and ethical issues of dying persons and the legal liabilities of the Hospice Volunteer.

    OBJECTIVES: Upon completion of this session, the participant should be able to:

    • Discuss New Hampshire laws on wills.
    • Discuss the implications of the “Living Will” and “Durable Power of Attorney”.
    • Understand auto liability if transporting a patient.
    • Discuss liability issues related to the role of the volunteer.



    Wealth Transfer
    Wills in the state of New Hampshire are governed by RSA:551. The University of New Hampshire Cooperative Extension offers a great resource booklet called Making a Will in New Hampshire.

    Advanced Directives
    Advance directives are instructions you give regarding your future care. They may be oral or written. They are intended to be shared with family, friends, or medical providers. Family, friends and medical providers attempt to understand and fulfill your instructions, no matter what form they are in. However, to ensure that everyone understands your instructions, the State of New Hampshire recognizes a written advance directive document with two parts: a Durable Power of Attorney for Health Care and a Living Will.

    The Foundation for Healthy Communities provides a booklet called the Advance Care Planning Guide to help New Hampshire citizens with the forms and guidance to complete this process. Additional resources on Advanced Directives in New Hampshire can be found here.

    The National Hospice and Palliative Care Organization issued this press release on March 12, 2010, talking about completing living wills and health care proxies. Click here for more information.

    Portable-DNR
    A Portable-DNR order tells health care providers, when you are outside a health facility (e.g., hospital or nursing home), not to try to restart your breathing or heartbeat in the event that that your heart stops beating or you stop breathing. It is assumed that everyone wants to try to have his/her breathing or heartbeat restarted, but you may decide not to have the providers attempt cardio-pulmonary resuscitation (CPR). Additional questions and answers about the New Hampshire Portable-DNR can be found here.

    Volunteer Liability
    Volunteers are protected in the state of New Hampshire from liability under RSA 508:17. This statute says that volunteers shall be immune from civil liability so long as they meet three basic criteria:

    1. the non-profit organization (HHHC) has documentation that the person is a volunteer,
    2. the volunteer is acting in good faith and within his/her role,
    3. the volunteer was not acting with willful, wanton or grossly negligent misconduct.

    Activity related to transportation is exempted from this liability. If a volunteer were in an auto accident while volunteering, the volunteer's liability insurance would be the primary payer.

    Volunteers might also be interested in knowing about New Hampshire's "Good Samaritan" law, RSA 508:12.

    Additional Links

    Recommended Library Resources

    • Video: Five Wishes

    ALS

    ALS (commonly known as Lou Gehrig’s Disease) - Questions & Answers
    (taken from the ALS Survival Guide)

    What is ALS?
    ALS is a fatal neuromuscular disease characterized by progressive muscle weakness resulting in paralysis.

    What do the letters ALS stand for?
    ALS stands for Amyotrophic Lateral Sclerosis. Like many medical terms it comes from Greek words.

    • A—without
    • Myo—muscle
    • Trophic—nourishment
    • Lateral—side (of the spinal cord)
    • Sclerosis—hardening or scarring

    Is there a cure for ALS?
    There is no cure for ALS, but there is a great deal of promising research going on now.

    How long do people with ALS live?
    50% of ALS patients die within 18 months after diagnosis. Only 20% survive 5 years and 10% live longer than 10 years. Persons with ALS who go on a ventilator may live for many years. Improved treatment is allowing ALS patients to live longer than before.

    What are the symptoms of ALS?
    ALS symptoms may include tripping, stumbling and falling, loss of muscle control and strength in hands and arms, difficulty speaking, swallowing and/or breathing, chronic fatigue, and muscle twitching and/or cramping. ALS is characterized by both upper and lower motor neuron damage. Symptoms of upper motor neuron damage include stiffness (spasticity), muscle twitching (fasciculations), and muscle shaking (clonus). Symptoms of lower motor neuron damage include muscle weakness and muscle shrinking (atrophy).
    In "ALS: A Comprehensive Guide to Treatment", Dr Mitsumoto lists upper motor neuron signs as spasticity, hyperreflexia, and pathological reflexes (Babinski's sign - the one where they run an object from the heel to the big toe). Lower motor neuron signs are listed as muscle weakness, truncal muscle weakness, muscle atrophy, fasciculations, hyporeflexia, hypotonicity or flaccidity, and muscle cramps. Bulbar signs are listed as dysarthria (speech problems), dysphagia (swallowing problems), and sialorrhea (drooling).

    What treatments are available?
    There is one FDA approved drug, Rilutek, which slows progression of the disease. There are a number of other medications to help relieve symptoms of ALS. Therapies, supplements, and proper nutrition can be part of a treatment plan.

    How common is ALS?
    The incidence of ALS is about two per 100,000. This means that for every 100,000 people, two will get ALS. The prevalence of ALS is about 11 per 100,000. This means that if you look at a population of 100,000 people, 11 of them will be living with ALS. In the United States, approximately 30,000 people are living with ALS. There are about 5,000 new cases per year, or 15 per day.

    Are there different types of ALS?
    There are three types of ALS. The most common type is called sporadic ALS. This type of ALS is not hereditary and accounts for 90% of ALS cases. Familial ALS is hereditary, is passed on by a dominant gene and accounts for nearly 10% of ALS cases. The third type of ALS is called Guamian and is related to the high incidence of ALS on the island nation of Guam.

    Is ALS always a fatal disease?
    ALS is almost always fatal. There are rare cases where the disease progression plateaus or stops. There are a few cases of people reporting a reversal of symptoms. If an ALS patient opts for a ventilator, he or she can live for many years with the disease.

    Do ALS patients suffer painful, suffocating death?
    In the majority of cases, ALS patients die painlessly and peacefully, often in their sleep. If an ALS patient does not opt for a ventilator to assist breathing, death is usually a result of insufficient oxygen which leads to a build-up of carbon dioxide in the blood. The build up of carbon dioxide has a narcotic effect on the patient making him or her sleepy. Many ALS patients also opt for medications to ease breathing discomfort and anxiety. ALS patients often choose to die in a hospice setting or at home where they can be comforted by their loved ones.

    What is the cause of death for ALS patients?
    A common cause of death among ALS patients is respiratory failure or cardiac arrhythmias due to insufficient oxygen. Another common cause of death is respiratory infection such as pneumonia. The risk of respiratory infections increases as weakened diaphragm and chest muscles make it more difficult to clear the lungs.

    Is ALS a disease of the muscles or nerves?
    ALS is a disease of the motor nerves, specific nerve cells in the brain and spinal cord that control voluntary movement. Motor nerves attach to muscles and when the motor nerves gradually degenerate and die, the muscles no longer receive nerve impulses. As a result of the nerve death, the muscles atrophy and waste away. When an ALS patient first notices neurological symptoms, more than half of the motor neurons may already be dead. The body has a remarkable ability to compensate for nerve loss and new nerves grow at the same time other nerves are dying. Eventually, nerve death becomes so pervasive that muscle paralysis is the result.

    Which muscles are affected first?
    Most ALS patients first notice muscle weakness in either the arms or the legs (32 percent in the arms and 36 percent in the legs.) This is called limb-onset ALS. Approximately 25% of ALS patients have difficulty speaking as their first symptom. This is called bulbar ALS because it involves the corticobulbar area of the brainstem. ALS is a very variable disease, and there are also cases affecting breathing first, without any other symptoms. Approximately 7 percent have difficulty breathing (dyspnea) as their first symptom.

    Are there muscles that are not affected?
    ALS does not affect all muscles. Bowel and bladder control remains intact as does sexual function. The heart muscle is unaffected. The muscles of the eyes are the last ones affected and, in some cases, are not afflicted.

    How does ALS typically progress?
    ALS progression can vary considerably with different patients. A common progression is as follows: difficulty walking resulting in the use of a cane followed by a walker and then a wheelchair. As the legs get weaker so do the arms and hands. The patient loses the ability to write, type, and feed themselves. As the muscles of the limbs become weaker, difficulties in speaking and swallowing begin to occur. This may result in the need for an augmentative communication system in order to communicate and a feeding tube in order to get adequate nutrition. Typically, the ALS patient has a gradual decrease in lung vital capacity as the muscles of the chest and the diaphragm begin to weaken. When lung vital capacity drops below 50%, the ALS patient needs to consider using a ventilator in order to stay alive. This progression may be as quick as six months or as long as several years.

    Does exercise help slow ALS progression?
    Exercise does not slow down the wasting of muscles due to ALS. Heavy exercise is not recommended because of the fatigue it causes on already weakened muscles. Light exercise such as walking, swimming, and stretching can help maintain strength in the muscles which are not yet affected by ALS. When muscle atrophy becomes severe, the only recommended exercise is range of motion to preserve joint flexibility.

    Does ALS affect speech?
    ALS does affect speech and swallowing when the disease involves the corticobulbar area of the brainstem. As the muscles of the mouth and tongue weaken, speaking becomes increasingly difficult. Speech therapy may be helpful to an ALS patient and can enable the person to be understood even with a weak voice. Eventually, ALS patients lose the ability to speak and must rely on an augmentative communication device in order to communicate.

    What is Bulbar ALS?
    Bulbar refers to the brain stem where motor neurons are concentrated. Bulbar ALS is the type of ALS where speaking and swallowing difficulties are the first symptoms. Many patients with bulbar ALS are unable to speak or eat but are able to walk and write. Bulbar-onset ALS patients generally have a faster disease progression than do limb-onset patients. Limb-onset patients eventually develop bulbar symptoms as their disease progresses.

    What is the average age of ALS onset?
    The average age of ALS onset is 55. ALS can affect people at any age, and cases have been found in persons as young as 12 and as old as 98. 80% of ALS cases begin between the ages of 40 to 70. There appears to be a trend of more younger patients in their 20's and 30's being diagnosed with ALS

    How do ALS patients eat when they lose their ability to chew and swallow?
    As muscle weakness makes eating more difficult, dietary consistency changes are needed. Gradually the diet includes softer foods and eventually may consist of puréed foods. When eating becomes too tiring or causes problems with choking, many ALS patients opt for a feeding tube. This is a relatively simple procedure which can greatly extend the quality and quantity of an ALS patient.

    Do all ALS patients become bedridden?
    Many ALS patients do not remain bedridden even though they may be totally paralyzed. Specially designed wheelchairs and lightweight, portable ventilators allow the patient to be mobile. Improvements in technology allow paralyzed ALS patients much more freedom of movement than in years past.

    What other health problems are caused by ALS?
    There are several health problems that can occur as a result of the immobility caused by ALS. All of these health problems are treatable. They include: skin breakdown which can lead to bed sores; problems with constipation and painful joint contractions resulting from lack of movement.

    Is depression common among ALS patients?
    Depression is common among ALS patients and may be more common among caregivers. Depression can be minimized through the use of antidepressant medication, counseling, and a strong network of supportive family and friends.

    Is ALS an expensive disease?
    ALS is a very expensive disease. The only FDA approved medication, Rilutek, costs approximately $700 a month. Other medications to treat ALS symptoms are also expensive. Adaptive equipment is expensive. A power wheelchair with tilt and recline features may cost $17,000. A home health aid for 10 hours a day may cost more than $30,000 a year. When an ALS patient goes on a ventilator, he or she will require skilled nursing care. This may cost in excess of $250,000 a year. Insurance companies may pay some of these expenses. Medicare and Medicaid may pay some of these expenses

    Are there any famous people who have or had ALS?
    The most famous person living with ALS is noted British physicist Stephen Hawking. He has been living with ALS for more than 35 years. He is able to move only two fingers. Other notable people who have had ALS are actor David Niven, baseball players Lou Gehrig and Catfish Hunter, U.S. Senator Jacob Javits and Soap Opera star Michael Zaslow.

    Additional Links

    Recommended Library Resources

    • Video: Maintaining Quality of Life: A Patient’s Perspective
    • Book: Tuesdays with Morrie by Mitch Albom

    HIV/AIDS

    “Facts for Life”
    Q&A on HIV & AIDS taken from amFAR AIDS Research

    What is HIV?
    HIV is the human immunodeficiency virus that causes AIDS. A member of a group of viruses called retroviruses, HIV infects human cells and uses the energy and nutrients provided by those cells to grow and reproduce.

    What is AIDS?
    AIDS (acquired immunodeficiency syndrome) is a disease in which the body's immune system breaks down and is unable to fight off certain infections, known as "opportunistic infections," and other illnesses that take advantage of a weakened immune system.
    When a person is infected with HIV, the virus enters the body and lives and multiplies primarily in the white blood cells. These are the immune cells that normally protect us from disease. The hallmark of HIV infection is the progressive loss of a specific type of immune cell called T-helper or CD4 cells. As the virus grows, it damages or kills these and other cells, weakening the immune system and leaving the individual vulnerable to various opportunistic infections and other illnesses, ranging from pneumonia to cancer. The U.S. Centers for Disease Control and Prevention (CDC) defines someone as having a clinical diagnosis of AIDS if they have tested positive for HIV and meet one or both of these conditions:

    • They have experienced one or more AIDS-related infections or illnesses;
    • The number of CD4 cells has reached or fallen below 200 per cubic millimeter of blood (a measurement known as T-cell count). In healthy individuals, the CD4 count normally ranges from 450 to 1,200.

    How quickly do people infected with HIV develop AIDS?
    In some people, the T-cell decline and opportunistic infections that signal AIDS develop soon after initial infection with HIV. Most people remain asymptomatic for 10 to 12 years, and a few for much longer. As with most diseases, early medical care can help prolong a person's life.

    How many people are affected by HIV/AIDS?
    The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that there are now over 34 million people living with HIV or AIDS worldwide. Most of them do not know they carry HIV and may be spreading the virus to others. In the U.S., nearly one million people have HIV infection or AIDS -- roughly one out of every 250 people. At least 40,000 Americans become newly infected with HIV each year, and it is estimated that half of all people with HIV in the U.S. have not been tested and do not know they are carrying the virus.

    Since the beginning of the epidemic, AIDS has killed nearly 19 million people worldwide, including more than 430,000 Americans. AIDS has replaced malaria and tuberculosis as the world's deadliest infectious disease among adults and is the fourth leading cause of death worldwide. Over 13 million children have been orphaned by the epidemic.

    How is HIV transmitted?
    A person who is HIV-infected carries the virus in certain body fluids, including blood, semen, vaginal secretions, and breast milk. The virus can be transmitted only if such HIV-infected fluids enter the bloodstream of another person. This kind of direct entry can occur (1) through the linings of the vagina, rectum, mouth, and the opening at the tip of the penis; (2) through intravenous injection with a syringe; or (3) through a break in the skin, such as a cut or sore. Usually, HIV is transmitted through:

    • Unprotected sexual intercourse (either vaginal or anal) with someone who is HIV-infected. Women are at greater risk of HIV infection through vaginal sex than men, although the virus can also be transmitted from women to men. Anal sex (whether male-male or male-female) poses a high risk mainly to the receptive partner, because the lining of the anus and rectum are extremely thin and filled with small blood vessels that can be easily injured during intercourse.
    • Unprotected oral sex with someone who is HIV-infected. There are far fewer cases of HIV transmission attributed to oral sex than to either vaginal or anal intercourse, but oral-genital contact poses a clear risk of HIV-infection, particularly when ejaculation occurs in the mouth. This risk is increased when either partner has cuts or sores, such as those caused by sexually transmitted diseases (STDs), recent tooth-brushing, or canker sores, which can allow the virus to enter the bloodstream.
    • Sharing needles or syringes with someone who is HIV-infected. Laboratory studies show that infectious HIV can survive in used syringes for a month or more, and people who inject drugs should never reuse or share syringes, water, or drug preparation equipment. This includes needles or syringes used to inject illegal drugs such as heroin, as well as steroids. Other types of syringes, such as those used for body piercing and tattoos, can also carry HIV.
    • Infection during pregnancy, childbirth, or breast-feeding (mother-to-infant transmission). Any woman who is pregnant or considering becoming pregnant and thinks she may have been exposed to HIV -- even if the exposure occurred years ago -- should seek testing and counseling. Mother-to-infant transmission has been reduced to just a few cases each year in the U.S., where pregnant women are tested for HIV, and those who test positive are provided with drugs to prevent transmission and counseled not to breast-feed.

    How is HIV not transmitted?
    HIV is not an easy virus to pass from one person to another. It is not transmitted through food or air (for instance, by coughing or sneezing). There has never been a case where a person was infected by a household member, relative, co-worker, or friend through casual or everyday contact such as sharing eating utensils and bathroom facilities or hugging and kissing. (Most scientists agree that while HIV transmission through deep or prolonged "French" kissing may be possible, it would be extremely unlikely). Here in the U.S., screening the blood supply for HIV has virtually eliminated the risk of infection through blood transfusions. (And you cannot get HIV from giving blood at a blood bank or other established blood collection center.) Sweat, tears, vomit, feces, and urine do contain HIV, but have not been reported to transmit the disease (apart from two cases involving transmission from fecal matter via cut skin). Mosquitos, fleas, and other insects do not transmit HIV.

    Are there treatments for HIV/AIDS?
    For many years, there were no effective treatments for AIDS. Today, people in the United States and other developed countries can use a number of drugs to treat HIV infection and AIDS. Some of these are designed to treat the opportunistic infections and illnesses that affect people with HIV/AIDS. In addition, several types of drugs seek to prevent HIV itself from reproducing and destroying the body's immune system:

    • Reverse transcriptase inhibitors attack an HIV enzyme called reverse transcriptase. They include abacavir, delavirdine, didanosine (ddI), efavirenz, lamivudine (3TC), nevirapine, stavudine (d4T), zalcitabine (ddC), and zidovudine (AZT);
    • Protease inhibitors attack the HIV enzyme protease and include amprenavir, indinavir, nelfinavir, ritonavir, and saquinavir.

    Many HIV patients are taking several of these drugs in combination -- a regimen known as highly active antiretroviral therapy (HAART). When successful, such combination or "cocktail" therapy can reduce the level of HIV in the bloodstream to very low, even undetectable, levels and sometimes enables the body's CD4 immune cells to rebound to normal levels.

    Researchers are working to develop new drugs known as fusion inhibitors and entry inhibitors that can prevent HIV from attaching to and infecting human immune cells. Efforts are also underway to identify new targets for anti-HIV medications and to discover ways of restoring the ability of damaged immune systems to defend against HIV and the many illnesses that affect HIV-infected individuals. Ultimately, advances in rebuilding the immune systems of HIV patients will benefit people with a number of serious illnesses, including cancer, Alzheimer's disease, multiple sclerosis, and immune deficiencies associated with aging and premature birth.

    Is there a cure for AIDS?
    There is still no cure for AIDS. And while new drugs are helping some people with HIV/AIDS live longer, healthier lives, there are many problems associated with them:

    • Existing treatments do not work for many people with HIV/AIDS.
    • Anti-HIV drugs are highly toxic and can cause serious side effects, including heart damage, kidney failure, and osteoporosis. Many (perhaps even most) patients cannot tolerate long-term treatment with HAART.
    • HIV mutates constantly. In as many as 40% of people on HAART, HIV mutates into new viral strains that have become highly resistant to current drugs, and as many as 10% of newly infected Americans are acquiring drug-resistant strains of the virus.
    • Because treatment regimens are unpleasant and complex, many patients occasionally miss doses of their medication. Failure to take anti-HIV drugs on schedule and in the prescribed dosage can encourage the development of new viral strains that are resistant to current HIV drugs.
    • Even among those who do respond well to treatment, HAART does not eradicate HIV. The virus continues to replicate at low levels and often remains hidden in "reservoirs" in the body, such as the lymph nodes and brain.

    Importantly, roughly 95% of all people with HIV/AIDS live in the developing world, where there is virtually no access to antiretroviral treatments. In the U.S., HAART contributed to a significant decline in the annual number of AIDS-related deaths between 1996 and 1998. But the rate of this decline has now slowed markedly, and some communities have begun reporting an increase in AIDS deaths.

    Is there a vaccine to prevent HIV infection?
    Despite continued intensive research, experts believe it will be at least a decade before we have a safe, effective, and affordable AIDS vaccine. And even after a vaccine is developed, it will take many years before the millions of people at risk of HIV infection worldwide can be immunized. Until then, other HIV prevention methods, such as practicing safer sex and using sterile syringes, will remain essential.

    Can you tell whether someone has HIV or AIDS?
    You cannot tell by looking at someone whether he or she is infected with HIV or has AIDS. An infected person can appear completely healthy. But anyone infected with HIV can infect other people, even if no symptoms are present.

    How can I know whether I'm HIV-infected?
    Immediately after infection, some people may develop mild, temporary flu-like symptoms or persistent swollen glands. Even if you look and feel healthy, you may be infected. The only way to know your HIV status for sure is to be tested for HIV antibodies -- proteins the body produces in an effort to fight off infection. This usually requires a blood sample. If a person's blood has HIV antibodies, that means the person is infected.

    How can I help fight HIV/AIDS?
    Everyone can play a role in dealing with this epidemic. Here are just a few suggestions for how you can make a difference in the fight against HIV/AIDS:

    • Volunteer with your local AIDS service organization.
    • Talk with the young people you know about HIV/AIDS.
    • Urge government officials to provide adequate funding for AIDS research, prevention education, medical care, and support services.
    • Speak out against AIDS-related discrimination.
    • Support continued research to develop better treatments and a safe and effective AIDS vaccine by making a donation to amfAR.

    Alzheimer's Disease & Other Forms of Dementia


    GOAL: To provide an overview of Alzheimer’s Disease and familiarize staff/volunteers with their responsibilities when working with individuals living with Alzheimer’s and their families.

    OBJECTIVES: Upon completion of this session, the participant should:

    • Be familiar with Alzheimer’s Disease and other types of dementia.
    • Understand strategies for working with and supporting individuals and their families.
    • Have a general understanding of the disease process and end of life symptoms.
    • Have some coping strategies for assisting with behavior management issues.



    "I've learned that people will forget what you said,
    people will forget what you did,
    but people will never forget how you made them feel.”


    - Maya Angelou


    Access the outline and notes from Kathy Hopkin's presentation Alzheimer's Disease: Joining the Journey of Care.

    View a simple Dementia Fact Sheet made available through the Alabama CARES REACH Project and the University of Michigan REACH OUT training initiative.

    Here you will find a list of local community resources to help family and friends who are caring for memory-impaired persons Local Resource List

    A tool commonly used to assess the progression of Alzheimer's Disease and other forms of dementia is the Global Deterioration Scale (GDS) developed by Dr. Barry Reisberg. View the Global Deterioation Scale.

    From this scale, a second tool was developed called the FAST Scale. This tool is used by hospice to assess and document a patient's functional status. View the FAST Scale.

    Validation is an approach to communicating with very old people with Alzheimer's type dementia. Access the slides from Sandy Nash's presentation Introduction to Validation. Also, view a short film of Validation in action with Naomi Fiel MSW, ACSW, the creator of Validation Therapy here

    The AgingCare newsletter of 10/27/10, includes an article on how to recognize the progressive stages of Alzheimer's. Click here to read the very informative article.

    Volunteer Deborah Heller attended a lecture with Dr. Paul Raia which she found very helpful in being with people who have dementia. She’s offered her lecture notes to share with other volunteers.

    HHHC has a special program for the patients it serves who have dementia. It is call the Seasons Program, and focuses on providing sensory stimulation to add value to each individual's quality of life. To understand what might be meaningful to a particular person, we need to know some of their life history, so we use a form called About Me.
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    Additional Links

    Recommended Library Resources

    • Book: Validation Breakthrough by Naomi Feil
    • DVD: Introduction to Validation Edward Feil Productions
    • DVD: There is a Bridge: Alzheimer's Disease is not the End by Memory Bridge
    • Book & Audiobook: Still Alice by Lisa Genova
    • Book: The 36-hour Day by Nancy Mace
    • Book: A Dignified Life: The Best Friends Approach to Alzheimer’s Care by Virginia Bell
    • Book: The Best Friends Staff: Building a Culture of Care in Alzheimer's Programs by Virginia Bell
    • Book: Talking to Alzheimer’s: Simple Ways to Connect When You Visit With a Family Member or Friend by Claudia J. Strauss
    • Book: The Forgetting Alzheimer's: Portrait of an Epidemic by David Shenk
    • Book: Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia by Nancy Pearce
    • Book: Alzheimer's Activities That Stimulate the Mind by Emiliea Bazan-Salazar
    • Book: Counseling the Alzheimer's Caregiver: A Resource for Healthcare Professionals by Mary Mittlelan
    • Book: Dancing with Rose: Finding Life in the Land of Alzheimer’s by Lauren Kessler
    • Book: Losing My Mind: An Intimate Look at Life with Alzheimer's by Thomas DeBagg

    Grief Education


    GOAL: To identify how adults and children experience grief as a process of recovery and to have an outline of our agency bereavement services.

    OBJECTIVES: Upon completion of this session, the participant should be able to:

    • Discuss the various theories of the grief process.
    • Discuss anticipatory grief and some indicators of abnormal grief reactions in dying persons and their families.
    • Discuss the meaning of terminal illness and death upon a family, at different ages and stages of its development.
    • Better understand Bereavement services offered by HHHC which includes the Good Grief Program for grieving children.
    • Discuss the pattern of grief that may be experienced by professional caregivers – nurses, Hospice workers, etc.
    • Understand ways for professional caregivers to separate from patient or family at the appropriate time and feel okay about closure.


    Important Grief Definitions

    Grief - The process of experiencing the psychological, social and physical reactions to a loss.

    Mourning – The outward expression of grief which is influenced by cultures and follows prescribed social customs.

    Bereavement – The state caused by loss such as death.

    Anticipatory Grieving – That which is experienced before a loss actually occurs, as in the case of terminal illness or long-term caregiving.

    Grief Work or Tasks of Mourning – The process of feeling emotions, thinking through the loss, facing the reality of the loss and fashioning a life without the person in your life.

    Adapted from Death and Grief, A Guide for Clergy, Dr. Alan Wolfelt, PhD., Accelerated Development Inc., Muncie, IN, 1988.

    Factors That Influence Grief

    1. The Relationship with the Person Who Died
    2. The Coping Mechanisms of the Bereaved
    3. Past Experience with Bereavement
    4. The Unique Character of the Person Who Died
    5. The Nature of the Death
    6. The Bereaved’s Religious and Cultural History
    7. The Ritual or Funeral Process
    8. The Support System of the Bereaved

    Other factors which are surfacing in society today are:

    • Emotionally unhealthy family systems
    • Fragmented and blended families
    • A mobile society where family members are not readily available

    To better understand some of the emotions that accompany grief, view an article on The 10 Most Common Grief Expressions.

    Myths About Grief

    • Grief and mourning are the same experience.
    • There is a predictable and orderly progression to mourning.
    • One should move away from grief, rather than toward it.
    • The goal is to “get over your grief”.
    • Tears are a sign of weakness.

    For more Grief myths and realities, view this information from the Hospice Foundation of America.

    List of factors and Myths About Grief adapted with permission from Bereavement Skills Training Outline, Dr. Alan Wolfelt, PhD. For a catalog of Dr. Wolfelt’s publications, write or phone: Companion Press, 3735 Broken Bow Road, Ft. Collins, CO 80526 (970)226-6050.

    The Experience of Grief

    Four Phases of Mourning

    1. Shock/Numbness
    • Lacks rationality
    • Healthy avoidance
    • Delusions/Hallucinations
  • Searching/Yearning
    • Desire to get loved one back
    • Painful repetition of loss
    • Denial of permanence of loss
    • Anger and Guilt
  • Disorganization/Despair
    • Life falling apart
    • No meaning/purpose
    • Helpless hopelessness
    • Fatigue, apathy, depression
    • Lack of self-esteem
  • Reorganization/Recovery
    • Putting life back together
    • Reinvestment in new activities/relationships

    Four Tasks of Mourning

    1. To Accept Reality of the Loss
    • Reunion impossible
    • Benefit of viewing dead body
    • Opposite – Denial
  • To Experience Pain of Grief
    • Need for assurance that pain is okay
    • Opposite – Not Feeling
  • To Adjust to Environment in which the deceased is missing
    • To make sense of loss
    • To modify one’s assumptions
    • Opposite – Not adapting
  • To Withdraw Emotional Energy and Reinvest it in other Relationships
    • Not loving deceased any less, but beginning to love others too
    • Opposite – not loving

    Manifestations of Normal Grief

    Feelings: Sadness, anger, guilt/self-reproach, anxiety, loneliness, fatigue, helplessness, shock, yearning, emancipation, relief and numbness.

    Physical Sensations: Stomach hollowness, throat tightness, chest tightness, over-sensitivity, depersonalization, breathlessness, muscle weakness, lack of energy and dry mouth.

    Cognition: Disbelief, confusion, preoccupation, sense of presence, hallucinations.

    Behaviors: Sleep disturbances, appetite problems, absent-mindedness, social withdrawal, dreams of deceased, avoiding reminders of deceased, sighing, restless over-activity, crying, visiting places or carrying objects that remind of deceased, treasuring obejects that belong to the deceased.

    Adapted from Grief Counseling and Grief Therapy, Second Edition (Springer, 1991), J. William Worden, PhD.

    View Techniques Used to Assist the Bereaved

    Children’s Grief

    Children experience three developmental stages associated with death:

    1. No Concept of Death (until age 5)
    • Loss as a departure (asleep, gone away)
    • Death gradual or temporary
  • Personification of Death (between ages 5-9)
    • Death fantasized as a separate person (invisible), accepts fact of death, seeks ways to avoid it, i.e., “See you in the morning.”
    • Death is identified with the dead.
  • Death Universal Experience occurs at different times and circumstances (age 9 or later)
    • Final cessation of all bodily functions
    Excerpted from Behavioral Concepts and Nursing Throughout the Span, S.L. Roberts, (Englewood Cliffs, NJ: Prentice-Hall, Inc.), 1978, pp. 151-154

    View the presentation on children’s grief that was shared in the volunteer training session.

    Additional Links

    Recommended Library Resources

    • Video: Beyond Death’s Door

    Bereavement Services

    With Home Health & Hospice Care —you are not alone in your grief.

    Bereavement Services from Home Health & Hospice Care (HHHC) are available to anyone who has experienced the death of a loved one. These services are based on a simple, yet powerful, philosophy: being able to talk about what you’re feeling, and finding compassionate support in that process. This is often the greatest source of solace and well-being.

    Journey Through Grief Series
    Anyone grieving the death of a friend or loved one may attend this monthly support group.
    At each session, different speakers share their insights about the grieving process, followed by
    small group discussion. Open to the public, no registration required. Meets the third Tuesday of each month from 6:30 - 8 pm. Held at HHHC's Merrimack office. Contact our Bereavement Coordinator at 603-420-1919 or 1-800-887-5973, or email [email protected] for further information. Check out the monthly topics under Upcoming Events on our home page at www.hhhc.org.

    Adult Support Groups
    These 9-week sessions are held three times a year—winter, spring and fall. Offered to anyone
    grieving the death of a loved one. Receive needed support and learn more about the grief process. Meets in Merrimack, NH.

    • Parent Loss Group
    • Spousal Loss Group
    • Elder Spousal Loss Group—for participants over 65

    Participants must register in advance and commit to attend all sessions. Contact our
    Bereavement Coordinator at 603-420-1919 or 1-800-887-5973, or email Deb.Pelletier
    @hhhc.org for further information.

    Teen Topics
    Ages 13 –18
    Teen Topics is a group open to teens grieving the death of someone significant in their lives.
    The goal of this group is to put teens in contact with others experiencing similar loss, helping
    them to understand that they are not alone in their grief experience. It also provides coping
    tools for the journey. Teens meet once a month for the academic year. Each session includes time for them to process what they are experiencing, as well as an activity such as collage, jewelry making, writing or yoga. Meets at HHHC's Merrimack office or at a prearranged off-site location. Pre-registration is required. For more information, contact the Good Grief Coordinator at 603-420-1914 or 1-800-887-5973 or email [email protected].

    Good Grief Program for Children
    Ages 4 –13
    This program is for any child who is grieving the loss of a loved one. Children are encouraged to
    express their feelings through art projects, writing exercises, group discussions, puppet play, and other age-appropriate activities. The program offers bereaved children an opportunity to develop coping skills in a safe and trusting environment with other children who are experiencing similar losses. Groups are facilitated by trained volunteers; children are grouped according to age.
    Meets weekly in the spring and fall. Preregistration is required. This program is held in Merrimack.
    For specifics, contact the Good Grief Coordinator at 603-420-1914 or 1-800-887-5973 or email
    [email protected].

    Community Hospice House

    The Community Hospice House is located at 210 Naticook Road in Merrimack.

    Get directionsfrom the Merrimack office to the Community Hospice House.

    View the Community Hospice House video.

    Funeral Home


    GOAL: To develop a sensitivity to the religious, cultural, and social significance of death and funerals in the American society.

    OBJECTIVES: Upon completion of this session, the participant should be able to:

    • Identify choices and decisions that the patient and/or surviving family might have to make in preparation for the funeral service.
    • List possible sources for financial assistance available to defray the costs of burial.
    • Explain the benefit of pre-arrangement for the funeral service.
    • Estimate the cost for burial, cremation and related services, including out of state burials.
    • Have an understanding of religious and cultural traditions that impact funeral arrangements.

    SESSION NOTE: This is one of our two off-site sessions. Click here for directions to the
    Davis Funeral Home.


    Why Do We Have Funerals?
    For thousands of years, funerals have been a means of expressing our beliefs, thought and feelings about the death of someone we love.

    The funeral ceremony:

    • Helps us acknowledge that someone we love has died.
    • Allows us to say goodbye.
    • Helps us to remember the person who died and encourages us to share those memories with others.
    • Provides a social support system for us and other friends and family members.
    • Allows us to search for the meaning of life and death.
    • Offers continuity and hope for the living.

    Meaningful funeral ceremonies are rights of passage. They help us move from life before the death to live after the death.

    The funeral ritual offers predictability and order when the world around us seems chaotic and beyond our control. It also provides a socially recognized forum for expression of our intense feelings of loss.

    The Visitation
    Why might we want to receive friends and family before the ceremony?

    Sometimes called the "wake", "calling hours" or "viewing", the visitation is a time for friends and family to support one another in their grief.

    Often the body is present in an open or unopened casket, allowing mourners to acknowledge the reality of the death and granting them the privilege of saying goodbye.

    People are able to visit in small groups and remember the person who died.

    Receiving friends through a visitation activates your support system and allows others to express their concern and love for you.

    Historically, the wake often lasted for days and was a ritual of honor and preparation for the burial to come.

    The word "wake" has the same root meaning as to "wake" from sleep. In this context, the "wake" is an awakening to the reality of the death and a watchful vigil that honors the transition from life to death.

    Typical Service Types

    • Traditional Burial: This type of service is when arrangements are made to have a visitation and funeral ceremony, followed by burial at the cemetery.
    • Direct Burial: This service is when arrangements are made to inter the deceased in a cemetery without having any ceremony or visitation.
    • Traditional Cremation: While very similar to traditional burial, the difference is that following the funeral, the deceased is transferred to the crematory instead of the procession going to the cemetery.
    • Direct Cremation: Direct cremation is selected when no ceremony or visitation is desired. It is most often the least expensive option offered.
    • Memorial Service: This is a service without the body present. A visitation, burial or cremation may or may not have preceded the memorial service.
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    Additional Links

    • Always Go To The Funeral An Essay by Deirdre Sullivan
    • Look at some unconventional ideas for funerals and memorial rituals with FRIENDS
    • How Did 6 Feet Become the Standard Grave Depth? Article
    • 5 Essential Differences between a Burial and a Cremation Service Article

    Recommended Library Resources

    • Video: The Undertaking (DVD)

    Bibliography

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    Additional Links

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