Antipsychotics Overprescribed in Nursing Homes (AARP article)

This post is likely only of interest to those who have family members
in nursing homes or skilled nursing facilities, or to those who are
giving antipsychotics to family members.

BSN group member Helen Medsger forwarded this article from a recent AARP Bulletin on to me.  It’s about antipsychotics being
overprescribed in nursing homes.  Unfortunately, Helen’s family
experienced this with their father (with Lewy Body Dementia).

Robin

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aarp.org/health/drugs-supplements/info-2014/antipsychotics-overprescribed.html

Drug Abuse: Antipsychotics in Nursing Homes
These dangerous medications are prescribed at an alarming rate without the patient’s consent
AARP Bulletin
by Jan Goodwin
July/August 2014

When Patricia Thomas, 79, went into a Ventura, Calif., nursing home
with a broken pelvis, the only prescriptions she used were for blood
pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother
anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was
withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.

Thomas, a former executive assistant, had been given so many
heavy-duty medications, including illegally administered
antipsychotics, by the Ventura Convalescent Hospital in November of
2010 that she could no longer function. If one drug caused
sleeplessness and anxiety, she was given a different medication to
counteract those side effects. If yet another drug induced agitation
or the urge to constantly move, she was medicated again for that.

“Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went
into the nursing home. She could dress and feed herself, walk on her
own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”

A Ventura County Superior Court judge agreed that Levine had a
legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and
hopefully we can replicate this nationwide,” says attorney Kelly
Bagby, senior counsel for AARP Foundation Litigation.

A national problem

Tragically, what happened to Patricia Thomas is not an isolated
incident. According to Charlene Harrington, professor of nursing and
sociology at the University of California, San Francisco, as many as 1
in 5 patients in the nation’s 15,500 nursing homes are given
antipsychotic drugs that are not only unnecessary, but also extremely
dangerous for older patients. The problem, experts say, stems from
inadequate training and chronic understaffing, as well as an
aggressive push by pharmaceutical companies to market their products.

“The misuse of antipsychotic drugs as chemical restraints is one of
the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today,” says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. “When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous.”

Kickbacks to doctors

Last November, in what the U.S. Department of Justice called “one of
the largest health care fraud settlements in U.S. history,” Johnson &
Johnson and its subsidiaries were fined more than $2.2 billion to
resolve criminal and civil charges because of their aggressive
marketing of drugs, including antipsychotics, to nursing homes, when
they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly
population. The corporation also allegedly paid kickbacks to
physicians, as well as to Omnicare, the nation’s largest
long-term-care pharmacy provider. Omnicare pharmacists were
recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.

Back in 2009, Eli Lilly did the same thing with its antipsychotic
Zyprexa, marketing to older people in nursing homes and assisted
living facilities, federal prosecutors charged. In a settlement, the
company agreed to pay $1.4 billion. “This case should serve as still
another warning to all those who break the law in order to improve
their profits,” Patrick Doyle, special agent in charge of the Office
of Inspector General for the U.S. Department of Health and Human
Services in Philadelphia, said at the time.

A report released in March by the inspector general of Health and
Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”

Antipsychotic drugs are intended for people with severe mental
illness, such as patients with schizophrenia or bipolar disorder. As
such, they carry the FDA’s black-box warning that they are not
intended for frail older people or patients with Alzheimer’s or
dementia. In those populations, these drugs can trigger agitation,
anxiety, confusion, disorientation and even death. “They can dull a
patient’s memory, sap their personalities and crush their spirits,”
according to a report from the California Advocates for Nursing Home
Reform.

Kept in the dark

What’s more, the law requires “informed consent” by a patient or, if
that is no longer possible, by his or her family before such drugs are
administered. Yet advocates say that, all too frequently, this doesn’t
happen. Levine, for example, says she didn’t know about all her
mother’s medications until she transferred her mom to another
facility. “When I saw the list of what she’d been given, I freaked
out. I was upset and angry, in tears,” she recalls.

How can such things happen? One explanation is that many facilities
don’t have enough properly trained staff: Most of the patient care in
nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if
you want a license to be a hairdresser, you need 1,500 hours of
training,” Harrington points out.

What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.

Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.

The result of all this can be so-called behavior problems among
patients — which is the explanation nursing homes cite for giving
patients unnecessary antipsychotic drugs, according to the U.S.
Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.

“There was a push by drug manufacturers, claiming these medications
work for seniors when they knew, in fact, that it doubled their risk
of death,” Chicotel says.

CMS, which oversees the nursing homes that receive funding from
federal programs, says it has been working to correct deficiencies in
nursing facilities, including the inappropriate use of medications.
The agency achieved the goal of reducing the inappropriate use of
antipsychotic drugs by 15 percent over a recent two-year period, and
hopes to get to a 30 percent reduction in the next few years,
according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000
patients are still receiving the drugs inappropriately. Hamilton
acknowledges that more needs to be done, but lack of funding from
Congress is making even the most preliminary work difficult.

A better way

Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

She cites an example of a male patient who was spending his days in a
noisy nursing home activity room. One day, he grew more and more
agitated and tripped an aide with his cane. To calm him down, the
staff took him to his private quarters. Over the following days, his
behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.

“The staff initially thought he had become violent and needed an
antipsychotic,” Phillips recalls. “But they ultimately realized that
the cacophony in the activity room was stressing him out. Caregivers
inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior.” Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.

Putting patients first

Another success story is the Beatitudes facility in Phoenix, which
dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.

The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler
approach, acknowledging that we are not in charge of a person’s life
— they are. In allowing them to retain their dignity, and adopt a
comfort level of care, we’ve had better outcomes,” says Alonzo. That
paradigm shift has not increased operating expenses, or required a
higher staff-to-resident ratio. “We discovered that better care was
better business,” Alonzo says.

For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”

Jan Goodwin is an award-winning author and investigative journalist
for national publications.

“A new normal” – 10 things learned about trauma

This post is of general interest.

Recently, I saw an online magazine article called “A new normal.”  The online magazine, “catapult,” is a Christian publication; it “fosters collaborative thought on practically living out faith in all areas of life and inspires hopefulness and action through the experience of community.”  I don’t find this article very religious, which is why I’m sharing it here.

There are not a lot of details about the writer, Catherine Woodiwiss.
She writes on faith, policy, and culture.

The author lists the ten things she learned from experiencing trauma.  We aren’t told what kind of trauma the author experienced.

It resonated with me in terms of dealing with the trauma of a loved one’s death.  It may resonate with many of you in different ways — whether you be a care giver or care recipient.

Here are the ten things the author learned:  (with details on a couple)

1.  Trauma permanently changes us.

2.  Presence is always better than distance.

3.  Healing is seasonal, not linear.

4.  Surviving trauma takes “firefighters” and “builders.” Very few
people are both.

5.  Grieving is social, and so is healing.

6.  Do not offer platitudes or comparisons. Do not, do not, do not.

“I’m so sorry you lost your son, we lost our dog last year…” “At
least it’s not as bad as…” “You’ll be stronger when this is over.”
“God works in all things for good!”

When a loved one is suffering, we want to comfort them. We offer
assurances like the ones above when we don’t know what else to say. But from the inside, these often sting as clueless, careless or just plain false.

Trauma is terrible. What we need in the aftermath is a friend who can swallow her own discomfort and fear, sit beside us and just let it be terrible for a while.

7.  Allow those suffering to tell their own stories.

8.  Love shows up in unexpected ways.

 

9.  Whatever doesn’t kill you…

 

There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.

10.  …Doesn’t kill you.

The short article is worth reading in its entirety.  See:

catapultmagazine.com/ten-things-7/feature/a-new-normal

A new normal
by Catherine Woodiwiss
catapult Magazine, vol. 13, num. 1, January 2014

 

Robin

“Exploring Positive Psychology in Caregiving” (Webinar, Thurs 6-26, 11am CA time)

Some of you may know of Janet Edmunson.  Her husband was thought to have PSP when he was alive but brain donation revealed he had CBD. (Both PSP and CBD are disorders in our local support group.)  She wrote a book titled “Finding Meaning with Charles” on what she learned as a caregiver; the book is organized around “caregiver affirmations.”

She visited the Bay Area several years ago and spoke on the topic of
“caregiver affirmations.”  She also joined several meetings with group
members.  Janet is the chair of board of CurePSP.  Plus she has been
hosting webinars for caregivers for the last couple of years.

Janet sent out this invitation recently for a 45-minute webinar
tomorrow (Thursday, June 26th, at 11am CA time) for caregivers that is hosted by eCareDiary.  If that’s not a convenient time for you, you might register anyway so that you can receive a link to a recording of the webinar.

The topic is:  Are You Emotionally Healthy? Exploring Positive Psychology in Caregiving.

If anyone participates in this webinar and is willing to share
highlights, please email me with your highlights so that I can share
with everyone here.

To get on Janet’s email list, visit her website at janetedmunson.com.

Robin

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Are You Emotionally Healthy? Exploring Positive Psychology in Caregiving

Caring for someone with a debilitating illness can drain us of the
emotional health we need day-to-day.  Whether you are a pessimist or
optimist, research in positive psychology demonstrates that we can
adopt a healthier thinking style that fosters strength, creativity and
resilience. Janet Edmunson, M. Ed. and author of “Finding Meaning with Charles,” explores this exciting research and uses practical
activities to explore positive ways to get through this challenging
life experience. Join us for this FREE 30 minute Webinar followed by a 15 minute Q&A session.

Presenter: Janet Edmunson
Janet Edmunson is an inspirational speaker and author of the book,
“Finding Meaning with Charles”.

Host: Susan Baida
Susan Baida is the Co-founder of eCareDiary.

Airdate:  Thursday, June 26, 2014
Time:  02:00 PM EST
Duration:  30 min + 15 min Q&A

Sign in to watch now:
If you can’t make the webinar, register anyway and we will send you a
link so that you can watch later.

ecarediary.com/WebinarOD39/Are-You-Emotionally-Healthy-Exploring-Positive-Psychology-in-Caregiving-.aspx

“How music, art, and horticulture can function as therapy” – Caregiver workshop notes

Last week, a Stanford colleague, Lauren Stroshane, RN, attended a talk by three people at the Avenidas Rose Kleiner Center in Mountain View.  The subject was:  how music, art, and horticulture can function as therapy.  Lauren took some notes during the caregiver workshop, and has shared them with us.

The speaker on the topic of art was Marguerite Manteau-Rao, LCSW.  Several people in our atypical parkinsonism support group know her.  She is a specialist in mindfulness-based caregiving.

Now, on to Lauren’s notes….

Robin

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“How Music, Art, and Horticulture can function as therapy”
Notes by Lauren Stroshane, RN
Avenidas Family Caregiving 101 Workshop on 6-19-14
Speakers: John Lehman, Linda Sullivan Baity, PhD, and Marguerite Manteau-Rao, LCSW

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1) “Listening to & Reminiscing with Vintage Music to Halt or Reverse
Memory Decline”
Speaker: John Lehman, Senior New Ways, seniornewways.org

Why music?
– scientific research has repeatedly shown that your brain responds
strongly to the music you listened to as a teenager
– music is a way of representing feelings and uses many types of brain
function simultaneously, more than most other activities

Memory & “vintage” music — meaning whatever is vintage for us
– teenage hormone changes and emotional development cement these memories
– entire episodes of memory are stored: sounds, smells, visuals, etc.
– brain imaging in the last 14 years shows dramatic improvements in
memory with music therapy

Program/therapy goals:
– improve or halt memory loss in adults 65+
– recover dignity in daily living
– group therapy and personal memory kits
– another goal is to eventually get these therapies reimbursed by
insurance companies, Medicare

Vintage Music Group Therapy
– groups of 15+ adults in residential and day care centers
– pre-therapy memory testing to establish baseline
– 2 one-hour music listening and reminiscing sessions each week for 6-12 months
– he incorporates listening to music, movement, touch, singing,
talking about memories
– memory re-testing every 6 weeks

Memory kits for individual use
– iRemember Now personal music kit including mp3 player pre-loaded
with the greatest hits from 1940s radio
– every song is announced beforehand
– includes 16.5 hours of music
– cost is $150 including shipping
– currently they only have 1940s available

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

2) Therapeutic horticulture
Speaker: Linda Sullivan Baity, PhD

Benefits of therapeutic horticulture
– relieves stress, increases energy, great exercise
– aging can present challenges for those who like to garden; she
discusses some ways to adapt the gardening environment

Horticulture therapy = formal methods used by trained PTs, OTs, and
rehabilitation professionals in a clinical setting

Therapeutic horticulture = looser, less formal approach that can be
used by anybody, either passively or actively

Gardening benefits…
1. the visual cortex — near vision, distance
2. hand-eye coordination
3. fine and gross motor skills
4. cognition — recognizing categories, logic, focus, following instructions
5. physiology — heart rate & blood pressure decrease, immune function increases
6. sensorimotor — stimulates all 5 senses

Removing barriers to horticulture therapy
– physical vs. attitudinal barriers
– start by assessing:
* height/weight
* dexterity
* vision / hearing
* strength
* stamina
* mobility
* safety!

Raised beds can be a tremendous aid
– 18″ high at least, with a wide board around it for sitting on
– 24″ high is perfect for a wheelchair or sitting stool
– 30-36″ good for standing
– don’t make it wider across than you can reach!
– should be about 30″ to the middle or less

Other ways to adapt
– plastic its are lighter & easier to move than ceramic
– 5-8% grade max in your garden for paths, choose direct routes not
meandering paths
– decomposed granite is a great surface for walking & wheelchairs but
not great for cane or walker
– extender to raise the water spigot
– small watering can
– security — how will the gardener get assistance if they need it,
how to prevent wandering
– huge assortment of ergonomic tools available
* wood handles can be too heavy; longer handles are good
– aprons with pockets can be handy for storing tools
– knee pads
– baskets for wheelchairs & walkers
– ratchet pruners

Resources: Books

“Accessible Gardening for People with Physical Disabilities: A guide
methods, tools & plants,” by Janeen Adil

“Enabling Garden: Creating Barrier-Free Gardens,” by Gene Rothert

“The Able Gardener” by Kathleen Yeomans, RN

The Christopher & Dana Reeve Foundation, Paralysis Resource Center
christopherreeve.org/site/c.mtKZKgMWKwG/b.5300837/k.7D2E/Gardening_from_a_Wheelchair.htm

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

3) Mindfulness and Art Therapy
Speaker: Marguerite Manteau-Rao, LCSW
presencecareproject.com

How to engage with a person with dementia during art therapy?
* facilitate but don’t lead
* recognize all peoples’ desire to make decisions & have choices
* people need to feel useful and competent — don’t overwhelm them or set them up to fail

Type of dementia diagnosis matters — may influence the type of art
and how you engage with them

Examples of art activities for many cognitive levels
– Smartphones photo exercise — use the “camera” function on your cell phone, let the person take a photo of something in the area. Then
engage with them to talk about why they chose that image, and what it
means to them
– collages
– stickers
– mandalas
– stencils
– clay can be fun BUT concern about ingesting it

Tips for successful art sessions
* provide some structure
* borders on the page
* still lives such as flowers in a vase
* don’t provide a big piece of paper
* limited # of colors, otherwise too many options can be overwhelming

Resources:

NY MOMA Alzheimer’s Project, moma.org/meetme/
– this contains modules for people with dementia
– activities, videos, photos

Helpful Reading List about Grief

The American Hospice Foundation has a great reading list by Helen Fitzgerald about books on grief.  All types of grief and audiences are included on the reading list — for the professional, when a family member is seriously ill, general grief, loss of a spouse, etc.  The full list is copied below.

Robin

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Helen’s Helpful Reading List

For The Professional

Guiding Your Child Through Grief Emswiler, James and Emswiler, Mary Ann. Bantam, 2000.
The authors are founders and directors of The Cove, a program for grieving children and their families, and of the New England Center for Loss & Transition.  The book is practical, compassionate, and down-to-earth.  It helps families deal with the initial shock; identify typical reactions in age groups; and achieve the “three goals” of family grieving: reestablishing stability, acknowledging the experience of loss individually and collectivelly, and supporting each member in his or her efforts to start growing again.

Psychosocial Care of the Dying Patient Garfield, Charles A. New York: McGraw- Hill, 1978.
A collection of articles addressing the many aspects of working with a dying patient and the grief they experience.

Helping Children Cope with the Death of a Parent: A Guide for the First Year (Contemporary Psychology) Greenwall, Lewis, Paddy. Praeger Publishers, 2004.
A helpful and carefully prepared book based on the author’s many years of working with children and bereavement. It explores how children from infancy through eighteen perceive and react to death, and how adults can guide and support them.

Healing Children’s Grief: Surviving a Parent’s Death from Cancer Hyslop Christ, Grace.  Oxford University Press, 2000.
The author examines how children aged 3 to 17 cope with terminal cancer and subsequent death of one of their parents.  The first section gives a summary of the literature on this topic and the second section makes use of extensive examples to present findings for five groups.

When Professionals Weep: Emotional and Countertransference Responses in End-of-Life Care (Series in Death, Dying, and Bereavement) Johnson, Therese and katz, Renee. Brunner-Routledge, 2006.
The authors address the issues surrounding the blending of personal and professional in context of end-of-life care. Topics include spirituality, assisted suicide, the influence of culture and ethnicity, and working with survivors.

Coping with Physical Illness Volume 2 : New Perspectives (Plenum Series on Stress & Coping) Moos, Rudolf. New York: Plenum Medical Book Company, l977.
This book discusses how people cope with serious illness and injury. A conceptual model for understanding the process of coping with illness. Basic adaptive tasks and types of coping skills are identified. An excellent reference for a wide range of physical illnesses.

Remembering: Providing Support for Children Aged 7 to 13 Who Have Experienced Loss and Bereavement (Lucky Duck Books) Nelson, Lorna patricia and Rae, Tina. Paul Chapman Educational Publishing; Book and CD edition, September 2004.
An easy-to-read book with worksheets that helps children acknowledge the experience of loss, allow the expression of pain, fear and sadness, present the process as a shared experience, encourage communication and facilitate recovery.

Grief, Dying, and Death: Clinical Interventions for Caregivers Rando, Therese A. Champaign, IL: Research Press Co., l984.

Treatment of Complicated Mourning  Rando, Therese A. Champaign, IL.: Research Press Co., 1993.
A must for any professional working in the field of bereavement.

Surviving : When Someone You Love Was Murdered : A Professional’s Guide to Group Grief Therapy for Families and Friends of Murder Victims Redmond, Lula Moshoures. Clearwater, FL: Psychological Consultation & Education Services, Inc., 1989.
A professional’s guide to group grief therapy for families and friends of murder victims.

But I Didn’t Say Goodbye : For parents and professionals helping child suicide survivors Rubel, Barbara.  Griefwork Center, 2001.
This book is for the professional or parent trying to help children in the aftermath of suicide. A good list of resources is available at the end of the book.

Talking with Children About Loss Trozzi, Maria. Perigee Trade, 1999.
The author discusses how children perceive and interpret events such as death, disability, and divorce. She explores children’s fears and fantasies and includes age-appropriate responses to children’s questions and concerns, as well as talking to children about long-term illness, suicide, and family or community tragedy.

Handbook of Bereavement: Theory, Research, and Intervention Stroebe, Margaret S, Stroebe, Wolfgang, hansson, Robert. Cambridge University Press, 1993.
Detailed coverage is given to the phenomenology of grief, distinctions between normal and pathological grief, and measurement and assessment techniques. Current theories are reviewed and underlying physiological mechanisms are surveyed, which help explain why the bereaved are highly vulnerable to ill health.

Companioning the Bereaved: A Soulful Guide for Counselors & Caregivers Wolfet, Alan.  Companion Press, 2005.
In this guide, Dr. Wolfet redefines the role of grief counselor. His model for “companioning” the bereaved encourages counselors and other caregivers to aspire to a more compassionate philosophy. With this model the caregiver learns to support mourners and help them help themselves heal.

Children and Grief: When a Parent Dies Worden, William J. Guilford press, 2001.
A practical, instructive, concise and sensible guide for any caregiver supporting a grieving child.

Grief Counseling and Grief Therapy, Fourth Edition: A Handbook for the Mental Health Practitioner Worden, William J.  Springer Publishing Company, 2001.
Dr. Worden presents his most recent thinking on bereavement drawn for extensive research, clinical work, and the best of the new literature. A must for anyone working with bereavement. An excellent handbook for the mental health practitioner.

When a Family Member Is Seriously Ill

Coming Home: A Practical and Compassionate Guide to Caring for a Dying Loved One Duda, Deborah New York: John Muir Publications, Inc., l984.
A guide to home care for the terminally ill.

The Road Back to Health: Coping with the Emotional Aspects of Cancer Fiore, Neil A. Berkeley, CA: Celestial Arts, 1990.
Dr. Fiore uses his personal experience with cancer to guide patients and their families through the psychological and emotional consequences of cancer and its treatment.

Cancer and Hope  Garrison, Judith Garrett, and Shepherd, Scott. Minneapolis: Compcare Publishers, l989.
Provides the cancer patient and family members with a resource when they feel most isolated. An excellent “how to survive” book.

Until tomorrow comes Kelly, Orville E. New York: Everest House, 1979.
The late Mr. Kelly was the author of Make Today Count and the founder of a nationally known organization by the same name. This book is for the cancer patient and his/her family. Many resources included.

In Sickness and in Health: One Woman’s Story of Love, Loss, and Healing Lynch, Gail. Fairview Press, 2002.
The author addresses her journey in a straightforward narrative. The book explains a person’s grief and the feelings are raw and real, though it also helps readers realize that people do survive pain.

When Someone You Know Has Aids Martelli, Leonard J., Messina, William, and Peltz, Fran D. New York: Crown Publishers, Inc., 1987.
A practical guide for both the professional and family where a loved one has AIDS.

General Grief

Chicken Soup for the Grieving Soul: Stories About Life, Death and Overcoming the Loss of a Loved One (Chicken Soup for the Soul) Canfield, Jack and hansen, Mark Victor.
A collection of inspirational stories written by authors who have lost loved ones. The vignettes offer comfort, peace and understanding to those who are grieving.

Living With Grief: After Sudden Loss Suicide, Homicide, Accident, Heart Attack, Stroke Doka, Kenneth. Taylor & Francis, 1996.
The author examines the subject of abrupt, unexpected death and its effects and implications for survivors. Topics include: after a heart attack or stroke, survivors of suicide, complicated grief in the military, and grief counseling for survivors of traumatic loss.

Mourning Handbook: A Complete Guide for the Bereaved Fitzgerald, Helen. New York: Simon & Schuster, 1994.
A comprehensive resource for practical and compassionate advice on coping with all aspects of death and dying.

When a Man Faces Grief / A Man You Know Is Grieving Golden, Thomas.
The author, a clergyman, grief counselor and writer provides 12 practical suggestions for men who are grieving, along with 12 practical suggestions for those who want to understand and help men who are grieving.

Living When a Loved One Has Died: Revised Edition Grollman, Earl A. Boston: Beacon Press, 1977.
A book about feelings after the death of a loved one. It is easy to read and to understand during the confusion of bereavement.

Up from Grief: Patterns of Recovery Kries, Bernadine and Pattie, Alice. New York: The Seabury Press, l969.
Describes the various stages of grief from the authors’ own experiences and those of 300 persons interviewed. Reassuring and educational.

When Bad Things Happen to Good People Kushner, Harold. New York: Schocken Books, l981.
Helps to understand where God fits into your life following a tragedy.

Seven Choices: Finding Daylight after Loss Shatters Your World Neeld, Elizabeth Harper. New York: Clarkson N. Potter, inc., 1990.
Informative book on general grief, pointing out you have choices along the way.

A Grief Like No Other: Surviving the Violent Death of Someone You Love O’Hara, Kathleen. Da Capo Press, 2006.
The book explores violent deaths including suicide, drug overdose, and death by vehicular homicide and drunk drivers. The intense feelings related to guilt, anger, and legal ramifications are explored.

Living through Mourning Schiff, Harriet Sarnoff. New York: Viking, 1986.
This book by the author of The Bereaved Parent helps one find comfort and hope when a loved one dies. An excellent guide through grief, looking at the different paths people take. Comprehensive.

How To Go On Living When Someone You Love Dies Rando, Therese A. New York: Bantam Books, 1988.
In this compassionate, comprehensive guide, Dr. Rando leads the reader gently through the painful process of grieving.

Hope For Bereaved: Understanding, Coping and Growing Through Grief Schoeneck, Therese S.
This book must be ordered: Hope For Bereaved, 1342 Lancaster Avenue, Syracuse, New York 13210. Cost is about $11.00 plus $2.50 for postage. A handbook of helpful articles for all kinds of grief situations. A very practical, “how to” book.

Rainbows and Rain: Finding Comfort In Times of Loss Waterfall, Peggy. Surge Publishing, 2005.
Readers learn that it is possible to find joy again, but they must first learn how to grieve. Readers will also learn that many are unequipped to express to others what they are experiencing and often find themselves at a loss to adequately convey their feelings. Patience is the first step.

Loss of a Spouse

A Handbook for Widowers Ames, Ed. Centering Corporation, 2004.
Talks to men openly and honestly about tears, guilt, feelings of anger, depression, isolation and loneliness. The author also explores the survivor’s health, job, money matters, living alone, and what to do with a wife’s belongings.

On Your Own, 5th Edition: A Widow’s Passage to Emotional and Financial Well-Being Armstrong, Alexandra (Ed.) and Donahue, Mary R.(Ed.) Chicago, IL: Dearborn Financial Publishing, Inc. 1993.
Excellent book for the widowed’s passage to emotional and financial well-being.

Getting A Grip On Grief: A Handbook for Widowers Bickford, Margaret. Author House, 2006.
A candid, specific and user friendly guide to help widowers live through the death of their wives. The book explores the time before the death, such as a terminal illness, as well as after the death, the funeral and beyond to rebuilding a life without the spouse.

The Year of Magical Thinking Didion, Joan. New York: Random House, 2005.
A woman’s personal story after the loss of her husband.

Why Her Why Now Elmer, Lou. New York: Bantam Books, 1987.
A man’s journey through love and death and grief.

Finding Your Way After Your Spouse Dies Felber, Marta.  Ave Maria Press, 2000.
This book is best for an older widow and consists of two page reflections, advice, a suggested prayer, and related scripture on a series of topics that very roughly reflects the grieving process.

When You’ve Become A Widow – A Compassionate Guide to Rebuilding Your Life Ginsburg, Genevieve Davis. Los Angeles: Jeremy P. Tarcher, Inc. 1987.
A compassionate guide to rebuilding your life.

Swallowed by a Snake: The Gift of the Masculine Side of Healing Golden, Thomas. Golden Healing Publishing, LLC; 2nd edition, 2000.
This book is for men and women about the masculine side of healing from loss. It explores how genders differ in their healing, how to garner a greater understanding between partners, and new ways to understand grief.

Widower Kohn, Jane Burgess and Kohn, Willard K. Boston: Beacon Press, l978.
A book written especially with the man in mind. It looks at what the widower faces, what he feels and what he needs.

Alone and Surviving Lindsay, Rae. New York: Walker and Company, l977.
This book emphasizes the problems of widows from ages 35 to 55 who often are faced with financial problems, coping with the day-to-day struggle of raising children, paying off the mortgage, meeting the professional challenges of finding a fulfilling job, and the abrupt and traumatic business of getting back into the “single scene.” A general guide for the widowed.

Survival Handbook for Widows and for Relatives and Friends Who Want to Understand Loewinshohn, Ruth Jean. Chicago: Follett Publishing Company, 1979.
This book explores what is known about a woman’s reaction to the death of a husband and offers practical as well as emotional support. It provides hope following one of the most traumatic human experiences.

Starting over: Help for Young Widows and Widowers Nudel, Adele Rice. New York: Dodd, Mead & Co., 1986.
Help for the young widow and widower.

Suicide

 After Suicide Loss: Coping with Your Grief Baugher Ph.D., Bob and Jordan, Ph.D., Jack.Sturbridge Group, 2002.
The authors are two experienced grief counselors. The book is organized chronologically and is designed to provide support and information through the first few days, weeks, months, and years after a suicide death.

My Son . . . My Son . . .: A Guide to Healing After Death, Loss, or Suicide Bolton, Iris. Atlanta, GA: Bolton Press, l983.
Written by a mother after her son’s suicide, this book has been helpful with other types of suicide deaths as well.

Dying to Be Free: A Healing Guide for Families After a Suicide Cobain, Beverly and Larch, Jean. Hazelden, 2006.
This book helps teach readers how to transform suffering into strength, misconceptions into understanding, and shame into dignity. There is a chapter about the “suicidal mind”which can help families not only comprehend their loved ones pain prior to suicide, but also understand why such desperation is so difficult to recognize.

The Urge to Die Why Young People Commit Suicide Giovacchini, Peter. New York: MacMillan Publishing Company, l981.
A look into the “whys” when young people think of and commit suicide.

After Suicide (Christian Care Books) Hewett, John H. Philadelphia: The Westminster Press, l980.
Probably the best book on suicide bereavement. Speaks to the emotional reactions of this most difficult death.

Do They Have Bad Days in Heaven? Surviving the Suicide Loss of a Sibling Linn-Gust, Michelle. Keningston Publishing Corporation, 2003.
A practical guide to help sibling suicide survivors help themselves. The book helps survivors, parents, teachers, counselors and friends understand the grief process that sibling survivors endure.

After Suicide: A Ray Of Hope For Those Left Behind Ross, Eleanora.  Da Capo Press, 2002.
The author’s husband completed suicide and she takes the reader beyond the silence and shame associated with suicide and shatters some of the most pervasive myths surrounding this tragedy. The author reflects on a culmination of 25 years of professional experience and her personal story.  She touches on topics such as addiction, abuse, neglect, and depression, as well as self-examination, spirituality and personal growth.

Mom I’m All Right Kathleen Sandefer, l990.
A mother’s story about the suicide death of her fourteen year old son and a must for any parent who has a child on some type of long-term prescribed medication.

Healing After the Suicide of a Loved One Smolin, Ann, and Guinan, John. New York: Fireside, l993.
An informative book that will provide suicide survivors with new insights into the emotional responses they may be experiencing following the self-inflicted death of a loved one.

Before Their Time: Adult Children’s Experiences of Parental Suicide Stimming, Mary. Temple University Press, 1999.
The book offers the perspectives of sons and daughters on the the deaths of mothers and fathers. In another section four siblings reflect on the shared loss of their mothers. Topics including the impact of parent’s suicide on adult children’s persona and professional choices, marriages and parenting, and sibling and surviving parent relationships are explored.

An Empty Chair: Living in the Wake of a Sibling’s Suicide Swan-Miller, Sara. Writers Club Press, 2000.
Sibling relationships are complex, and after a suicide feelings run the gamut and they are often intermixed. Some reactions can also seem shameful or inappropriate. Includes moving accounts of other sibling survivors.

Children

When Dinosaurs Die: A Guide to Understanding Death (Dino Life Guides for Families) Brown, Laurie Krasney and Brown, Marc. Boston: Little, Brown & Co., 1996.
A book to read to a pre-school child on all aspects of death.

The Dead Bird Brown, Margaret Wise. Reading, MA: Addison-Wesley Publishing Co., 1938.
An excellent picture book to read to pre-school children to introduce them to the concept of funerals and burials.

My Grandpa Died Today Fassler, Joan. New York: Human Sciences Press, l971.
A book about the love shared by a young boy and his grandfather.

The Grieving Child: A Parent’s Guide Fitzgerald, Helen. New York: Fireside. 1992.
Organized like a book on infant care with detailed cross references. This book provides practical advice for surviving parents and others charged with the care of grieving children. For the parents of grieving children as well as adults with unresolved childhood grief.

Life and Loss: A Guide to Help Grieving Children Goldman, Linda. Muncie, IN: Accelerated Development, Inc., 1994.
An easy-to-read, workbook approach to help grieving children.

Bart Speaks Out: Breaking the Silence on Suicide Los Angeles: Western Psychological Services, 1998.
A book set up in interactive, workbook style to help young children understand and cope with a suicide.

Breaking the Silence: A Guide to Helping Children with Complicated Grief – Suicide, Homicide, AIDS, Violence and Abuse (Travel Guides) Washington, D.C.: Accelerated Development, Inc., 1996.
A book for parents and professionals to use in helping children deal with complicated grief.

Straight Talk about Death for Teenagers: How to Cope with Losing Someone You Love Grollman, Earl A. Boston: Beacon Press, 1993.
A wonderful book for teenagers who have experienced the death of someone they love. This book includes a journal section where you can record your memories, feelings, and hopes.

Talking about Death: A Dialogue between Parent and Child Boston: Beacon Press, 1990.
A book which the parent can read to the child. It includes a Parent Guide and recommended resources.

When My Dad Died Mathews, Janice M. Ann Arbor, MI: Cranbrook Publishing Company, 1981.
To be read to a pre-school child when a father has died.

When My Mommy Died Hammonds, Janice M. Ann Arbor, MI: Cranbrook Publishing Company, 1980.
To be read to a pre-school child when a mother has died.

Dying is different Hughes, Phyllis Rash. Mahomet, IL.: Mech Mentor Educational, 1978.
Helps children to see death as part of life. Invites questions and exploration. Focuses on increasing the child’s awareness of life and death in its most common forms. It is a sensitive and honest introduction to a serious subject.

Where’s Jess: For Children Who Have a Brother or Sister Die Johnson, Joy and Johnson, Marv. Omaha, NE: Centering Corporation, 1982.
A book to read to a pre-school child when a baby sibling dies.

Learning to Say Good-By: When a Child’s Parent Dies LeShan, Eda. New York: Avon, l978.
Written for the whole family, this book opens the way to genuine communication between youngsters and adults. In simple, direct language, LeShan discusses the questions, fears, fantasies and stages of mourning that people need to go through.

Aarvy Aardvark Finds Hope: A Read Aloud Story for People of All Ages About Loving and Losing, Friendship and Hope O’Toole, Donna. Burnsville, N.C.: Celo Press, l988.
Aarvy Aardvark comes to terms with the loss of his mother and brother with the help of his friend Ralphy Rabbit. A wonderful story of loss and grief. This story needs a parent to translate the animal story to people, then to the child’s particular situation.

Someone Special Died Prestine, Joan Singleton. Los Angeles: Price/Stern/Sloan, 1987.
A book to read to a pre-school child who has had a significant person die.

The Kid’s Book About Death: Helping Children to Understand Death, Grief and Loss (Happy Kid’s Series) Rofes, Eric E. and the unit at Fayerweather Street School. Boston: Little, Brown & Co., 1985.
Fourteen children offer facts and advice to give young readers a better understanding of death.

Tell Me, Papa Slater, Dr. Robert C. Council Bluffs, IA: Centering Corporation, 1978.
Children have many questions about death. This book takes the great unknown of death and tells it as it is through the words of Papa. The feelings that are triggered by death are explained and shared in a loving and caring context. The child will learn that feelings are normal.

About Dying Stein, Sara Bonnett. New York: Walker and Company, 1974.
An open family book for parents and very young children together. The use of photographs makes death very real. Includes guidelines for parents.

Am I Still a Sister? Sims, Alicia M.  Newtown, PA: Fallen Leaf Press, 1992.
For the pre-school child after the death of a baby sibling.

I’ll Always Love You Wilhelm, Hans. New York: Crown Publishers, 1985.
A wonderful story to read to pre-schoolers regarding a dog’s death. A good introduction to death.

Parent Grief

After a Loss in Pregnancy Berezin, Nancy. New York: Fireside, 1982.
Help for families affected by a miscarriage, a stillbirth or the loss of a newborn.

WHEN PREGNANCY FAILS Borg, Susan and Lasker, Judith. Boston: Beacon Press, 1981.
For families coping with miscarriage, stillbirth and infant death.

Andrew You Died Too Soon Chilstrom, Corinne. Augsburg Fortress Publishers, 1993.
A mother tells the story of her son’s suicide in a simple and straightforward language. It’s a good resource for parents grieving the death of a child due to suicide.

Surviving Pregnancy Loss Friedman, Rochelle and Gradstein, Bonnie. Boston: Little, Brown and Company, 1982.
This book contains descriptions of reactions to pregnancy loss and practical approaches to coping with the associated emotional problems. A comprehensive discussion of the physical and emotional consequences of pregnancy loss.

Parental Loss of a Child Rando, Therese A. (Ed.) Champaign, IL.: Research Press Co., 1986.
A series of articles written by many different authors covering all aspects of this special grief.

The Bereaved Parent Schiff, Harriet Sarnoff. New York: Crown Publishers, l977.
A book of counsel for those who suffer the heartbreaking experience of a child’s death.

For Family and Friends

I Never Know What to Say: How to Help Your Family and Friends Cope with ** Donnelley, Nina Herrmann. New York: Ballantine Books, 1987.
Your friend’s wife or husband has died. Your neighbor’s child has died. Your friend is dying. What can you do? This book has all those answers and much more.

How to deliver death news Geary, David Patrick. San Francisco, CA, Compass Publishing Co., l982.
Even though this book carries a heavy title, it is full of information that will be helpful if ever you have the task of informing a friend or neighbor of the death of their loved one.

What Helped Me When My Loved One Died Grollman, Earl A. (Ed.) Boston: Beacon Press, l981.
Learn from those people experiencing grief over the death of a loved one what was helpful to them.

I Know Just How You Feel: Avoiding the Cliches of Grief Linn, Erin. Cary Il, The Publishers Mark, 1986.
A wonderfully humorous book with practical information.

Healing a Friend’s Grieving Heart: 100 Practical Ideas for Helping Someone You Love Through Loss (Healing a Grieving Heart series) Wolfelt, Alan. Routledge, 1998.
Provides 100 practical and fresh ideas for supporting a grieving friend or family member.

Parent Death for Adult Child

Nobody’s Child Anymore: Grieving, Caring and Comforting When Parents Die Bartocci, Barbara. Sorin Books, 200.
Topics include the parent dying, comforting the surviving parent, and finding new meaning.

Motherless Daughters: The Legacy of Loss, Second Edition Edleman, Hope. Da Capo Press; 2nd edition, 2006.
The author’s own grief after her mother’s death when she was 17, along with the grief of hundreds of other women is captured in this book.  There is a wealth of anecdotal evidence, supplemented with psychogical research about bereavement.

Finding your Way After Your Parent Dies Gilbert, Richard. Ave Maria Press, 1999.
A compassionate guide for those struggling with the loss of a parent. It offers practical suggestions for navigating these difficulties.

When Parents Die: A Guide for Adults Myers, Edward. Penguin, 1997.
A practical guide that relies primarily on interviews and questionnaires. The author covers the grieving process, the difference in impact of sudden death versus slow decline, practical and emotional issues involved in planning the funeral, dividing personal property, and resolving residual feelings.

Grieving the Death of a Mother Smith, Harold Ivan. Ausburg Fortress Publishers, 2003.
The author draws on his own experience and that of others and guides readers through their grief, from the process of dying through the acts of remembering and honoring a mother after her death

The Death of a Pet

Pet Loss and Human Emotion, second edition: A Guide to Recovery Barton Ross, Cheri. Routledge, 2005.
Details the situations a counselor can encounter with pet loss while helping children grieve the death of a pet. Topics include euthanasia, special types of loss, and types of support and therapies.

Pet Loss: Thoughtful Guide for Adults and Children, A Fischer, Arlene and Nieburg, Herbert A., New York: Harper & Row, publishers, 1982.
This is a book that deals openly and honestly with the impact of the death of a beloved dog, cat or other pet — often the first experience a child has with death. Thoroughly researched and expertly written, this comprehensive guide can be a valuable educational tool.

Goodbye, Friend: Healing Wisdom for Anyone Who Has Ever Lost a Pet Kowalski, Gary.New World Library, 2006.
Kowalski writes, “Animals enrich our lives in countless ways, with their playfulness, their tranquilty [sic], their constancy, and their love.  The book will help readers mourn and remember their pets.

American Hospice Foundation

Helen Fitzgerald is a Certified Thantologist, author, and lecturer. For 23 years, she was the coordinator of the Grief Program for Mental Health Services in Fairfax County, Virginia. There, she conducted therapeutic group sessions for grieving children which included pre-schoolers. Her books include The Grieving Child, The Mourning Handbook, and The Grieving Teen. Ms. Fitzgerald has written two manuals for the American Hospice Foundation: the Grief at School Resource Manual and Grief at Work: A Manual of Policies and Practices. She has also written for or has been quoted in Parent’s Magazine, Good Housekeeping, and many other publications. Presently, she contributes to the website beliefnet.com.

Ms. Fitzgerald has appeared on the CBS Morning Show, NBC Today Show and Nick News on the Nickelodeon cable network. Washingtonian magazine named Ms. Fitzgerald one of the top Washington psychotherapists. She has provided training for school psychologists and counselors throughout the country and is often called upon to address crisis situations at schools and organizations in the Washington area – including the World Bank, the US Congress, and Children’s Hospital.

She is a former board member of the Association for Death Education and Counseling, which presented her with its annual Clinical Services Award. She was also presented the Community Service Award of the Social Work Association of Fairfax County. Her biography appears in Who’s Who in America.