“PSP: A Primer for the Newly-Diagnosed” (video)

Though this CurePSP video was designed for those dealing with a new diagnosis of PSP, I think the hopeful messages in the video are worth listening to, regardless of the “stage” of PSP with which you are living. I’ve been handing out the DVD at our caregiver support group meetings for the last 18 months. The video is also available online here:


[Editor’s Note: link updated in 2016.]

I’ve copied my notes on the video below.



PSP: A Primer for the Newly-Diagnosed (video)
Published in late 2012 (Robin’s guess)

This 14-minute video includes:
* actress and CurePSP national spokesperson Patricia Richardson
* expert neurologist Dr. Lawrence Golbe
* patient, Thomas Timm, and spouse, Debra Timm
* volunteer Becky Hill


Getting the facts is vital.


PSP is a degenerative disease of the brain. It causes brain cells in many different areas to not work well, and then die off.

There are only 4K-5K in the US with the disease. About three times that many have the disease but aren’t yet diagnosed with it.

1:52 Most common first symptom: unheralded falls. This occurs in 60-65% of people. There’s no change in walking to go along with the falls.

2:03 Next most common symptom is a change in behavior — becoming more withdrawn or more outgoing.

2:11 PSP very rarely runs in families. Fewer than 1% of people with PSP have a family member who is affected.

2:50 Many of the symptoms of PSP can be treated with existing medication.

3:08 There is also physical and rehabilitative treatment, including exercise, that can be very helpful to someone with PSP.


Work with therapists as soon as possible, after you’ve been diagnosed.

THOMAS TIMM (patient)

4:30 Balance problems. Then memory problems.

Upon receiving the diagnosis, my wife was terrified.

Ask your doctor to be very upfront and tell you exactly what they expect.


6:18 First symptoms: forgetful and distant (not engaging in conversation).

Diagnosis felt like we were both being hit by a train. A lot of things were probably said that we didn’t hear.

7:30 My goal every day is to make his day the best it can be.

When you love someone, there is no burden.

BECKY HILL (volunteer)

8:18 Became a volunteer after caring for my late husband. I wanted to be able to pass along the knowledge I gained.

8:50 Great fulfillment in volunteering. Wonderful to see a difference being made.

Participating in a support group is really important. You find out you are not alone. There is plenty of hope. There’s opportunity to share your knowledge to try to help others who are going through the same thing.

10:00 Most people feel they aren’t support group-candidates. I knew I needed help because this experience was far greater than me. I encourage everybody to make that first call or contact.


10:40 Maintaining hope is vital. Hope is as vital as oxygen. Those with hope may live longer and more meaningful lives.


11:07 Hope is a valid scientific opinion. There are lots of new developments going on in understanding and treating PSP. It is realistic to be hopeful. I am hopeful. All the researchers I know are very hopeful. They all expect their efforts will improve the lives of sufferers with PSP.

A good emotional attitude towards one’s illness does help the long-term outcome of that illness.


11:59 There is going to be a cure some day for PSP.


12:11 Hope is a state of mind. You need to have a good state of mind. Faith, and you have to be strong.


12:23 I am very hopeful for the future.

12:35 If you have recently been diagnosed, just remember – there is hope. Keep exercising. Enjoy each day. Take one day at a time. Keep smiling.

[Robin’s note: There’s a cute surprise at the very end of the video.]

The Challenge of Obtaining an Accurate Diagnosis in FTD

The Association for Frontotemporal Degeneration has published a terrific paper explaining the research and drug development landscape in FTD (frontotemporal degeneration).  FTD is an umbrella term that refers to:

  • Behavioral disorders:  Frontotemporal Dementia – Behavioral Variant
  • Language disorders:  Primary Progressive Aphasia (including Semantic Dementia)
  • Movement disorders:  Corticobasal Degeneration and Progressive Supranuclear Palsy

Here’s a brief excerpt on obtaining an accurate diagnosis.



Excerpt from:

FTD Research and Drug Development Landscape
Published May 2014
Association for Frontotemporal Degeneration (AFTD)

The Challenge of Obtaining an Accurate Diagnosis in FTD  (page 11)
Misdiagnosis is a major problem for FTD patients and caregivers, and it can contribute to delays in accurate identification of an FTD syndrome. This is due in part to symptoms that appear to reflect aspects of other dementias, such as AD and mild cognitive impairment (MCI) or psychiatric disorders such as schizophrenia, bipolar disorder or depression. A decade-long retrospective survey of patients at a specialty clinic found that patients with bvFTD receive a prior psychiatric misdiagnosis more often (52.2%) than patients with AD (23.1%), svPPA (24.4%) or naPPA (11.8%). BvFTD patients were also more likely than patients with other neurodegenerative diseases to be diagnosed with bipolar disorder or schizophrenia.

Although memory loss is considered a distinguishing feature of AD, more papers are
appearing in the literature reporting episodic memory loss in FTD. Although revised diagnostic criteria for bvFTD and PPA were implemented in 2011, considerable expertise with FTD and other cognitive disorders is required and it is less likely that the nonspecialist can readily distinguish FTD from AD or psychiatric disorders. There is an urgent need for blood- or cerebrospinal fluid-based diagnostic markers to complement neuroimaging along with improved medical education to support the family physician in discriminating FTD and AD from other disorders.


“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:


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



“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.



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.


MSA Coalition’s 2014 Conference for Patients/Family

This announcement about the MSA Coalition’s 2014 Conference for
Patients and Family was posted to the ShyDrager Yahoo!Group recently.

The conference is on October 17th and 18th in Crystal City, VA (near
Washington, DC).  I believe they have started recording these events
and DVDs are eventually available.  But, if anyone attends from our
local support group, please share your notes!



You are cordially invited to attend:

The MSA Coalition’s
2014 Conference
For Patients
Family & friends

When: October 17 -18, 2014

Where: Arlington, Virginia

Hotel: The Westin Crystal City

Airport: Washington National (DCA)

Cost: There is no fee to attend this educational conference. Meals and
snacks are provided at no charge.  Should you wish to help us offset
our costs we kindly suggest a $40 donation per person.

RSVP: Please Register with the MSA Coalition
(add www to the front of this website address)


Friday, Oct 17
6:00pm – 9:00pm Friday Evening Welcome Social Hour — No charge
A generous selection of hot and cold hors d’oeuvres, fruit & cheese
trays, cookies, coffee, tea and soft drinks

Saturday, Oct 18
7:30am Breakfast buffet — No charge
Full hot American breakfast buffet, coffee, tea and juice
9:00am Medical Presentations — speakers and topics TBD
10:30am Break & Snacks
10:45am Medical Presentations
12:00 Noon Lunch buffet — No charge
Hot and cold lunch items, coffee, tea and soft drinks
1:00pm Medical Presentations
2:15pm Break & Snacks
2:30pm Medical Panel – Q & A
4:00pm Patient/Caregiver/Survivor Breakout Sessions
5:00pm Conference Adjourns


“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….



“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

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

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

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


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.



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.


 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.


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.

Questions to Ask When Selecting a Hospice Agency

A short interview with the head of the American Hospice Foundation was in this Tuesday’s New York Times.  Naomi Naierman believes:  “You have to become a very savvy consumer about what is likely to be the most important health care decision you make in your life.”

To that end, Ms. Naierman offers some questions that she’d recommend people ask each hospice agency being interviewed:

* How long have you been in operation?

*  What can you tell me about your staff’s response time should I need your services on the weekend or on evenings? How long will I have to wait in an urgent situation?

* Is it your practice to keep a nurse or another clinician in the home when a patient is actively dying?  Does the family get support? Do you see the patient through death?

[Robin’s note:  Not all families want “continuous care,” but I agree with the premise that it should be available to those families who want it.]

* Do you have an inpatient facility, in case my symptoms become complicated?

* What kind of respite care do you offer, under what circumstances? Would it be a nurse or aide who comes, or a volunteer? Do you provide it once a week or twice? For how long?

We’ve turned the American Hospice Foundation’s full list of 16 questions you can ask a candidate hospice agency into a blog post here:


Note that the American Hospice Foundation (americanhospice.org) is closing its doors at the end of June 2014 so check out their website
now to gather useful info.

Here’s a link to the New York Times article:


How to Choose a Hospice
The New Old Age: Caring and Coping
The New York Times
By Paula Span
June 17, 2014 1:43 pm

A final note:  Lots of people don’t know that you can change hospice agencies.  If the agency you initially selected doesn’t work out, consider changing to a different agency.  Asking at a support group meeting is a good place to get the low-down on hospice agencies in particular geographic area.  If you can’t attend the BSN support group meeting in San Mateo, ask a Parkinson’s or Alzheimer’s support group leader in your area, ask friends and neighbors, or ask at a senior center or place of worship near you.






Family Caregivers Kit (nine booklets)

Though this post is about a “caregivers” kit, I think the
publications are of general interest, not just to caregivers.

I read about the US government’s “Family Caregivers Kit” in the Dear Abby column in yesterday’s paper.  The kit is basically nine
government publications packaged together as a kit.

The nine publications are:

  • Consumer Action Handbook
  • Health Scams
  • Money Smart for Older Adults
  • Managing Someone Else’s Money: Help for Agents Under a Power of Attorney
  • Managing Someone Else’s Money: Help for Court-Appointed Guardians of Property and Conservators
  • Managing Someone Else’s Money: Help for Representative Payees and VA Fiduciaries
  • Managing Someone Else’s Money: Help for Trustees Under a Revocable Living Trust
  • My Medicines
  • Use Medicines Wisely

You can download these nine booklets or read them online here:

Or you can order the complete kit online here:

Or by calling 888-878-3256 (weekdays, 8am to 8pm, ET).

The “Managing Someone Else’s Money” series of booklets looks especially useful.



“Caring for the Greatest, Muhammad Ali” (AARP Bulletin, June 2014)

This post may be of interest to both caregivers and care recipients.

A few of us had the pleasure in 2007 to see Lonnie Ali speak at The Parkinson’s Institute about the role of a caregiver.  She didn’t sugar-coat any aspect of being a caregiver, and knew that the resources she has don’t compare to the resources most of us have.

After her talk, I was told that the word on the street is that Muhammed Ali has one of the atypical parkinsonism disorders.  Given how long he has lived, I’m not so sure that’s the case.

AARP publications (the magazine or bulletin) have a Lonnie Ali and caregiving article every other year or so.  You can find this year’s contribution in the June 2014 AARP Bulletin.  Here are two key excerpts:

  • “The hardest part for any caregiver, whether it is a child, parent or spouse, is the relationship change,” Lonnie says. “The relationship changes over time with the illness. Physically, [patients] are not as mobile; they are not able to do things with you like they used to. The medications might affect their cognitive ability. They may not be able to speak as well. … That is where you [transition] from a wife or a husband to a care partner or caregiver.”
  • The biggest potential danger, Lonnie cautions, is that caregivers “must guard against becoming bitter because you feel like your life is being robbed from you. And to not let the person you are caring for become bitter in the sense that they feel guilty — ‘I am robbing you of your life.’ … That just makes [the] depression even worse,” she says.  “To be honest, I can deal with Parkinson’s all day. Depression is scary. It affects everyone differently. Trying to get past that slippery slope, and getting them out of that hole, is not easy.”

And you can read the full article here:


Caring for The Greatest, Muhammad Ali
Boxing champion’s caregiving wife, Lonnie, shows what it means to go
the distance with Parkinson’s disease
AARP Bulletin
by Jon Saraceno
June 2014