Reading List & More
March 29, 2008
I will be adding to this list as I find more and as you send me your favorites.
Books
Bereavement
- After the Death of a Child. Living with Loss Through the Years
- Helping Children Cope With the Loss of a Loved One. A Guide for Grownup
- How To Survive The Loss Of A Parent . A Guide for Adults
- How Do We Tell The Children? A Step-By-Step Guide for Helping Children Two to Teen Cope When Someone Dies
- I Can’t Stop Crying. It’s So Hard When Someone You Love is Dying
- The Loss That Is Forever. The Lifelong Impact of the Early Loss of a Mother or Father
- Motherless Daughters. The Legacy of Loss
- Sad Isn’t Bad: A Good-Grief Guidebook for Kids Dealing With Loss
- Sibling Loss
- You Can Help Someone Who’s Grieving. A How-to Healing Handbook
- When Bad Things Happen To Good People
Caregiving
- The Complete Bedside Companion
- Daily Comforts for Caregivers
- Dancing on Quicksand. A Gift of Friendship in the Age of Alzheimers
- The Comfort of Home. An Illustrative Step by Step Guide for Caregivers
- Fourteen Friends’ Guide to Elder-Caring Practical Advice, Inspiration, Shared Experiences, Space for Your Thoughts
- At Home With Terminal Illness. A Family Guide to Hospice in the Home
- Keeping Busy. A Handbook of Activities for People with Dementia
- What If It’s Not Alzheimer’s? A Caregiver’s Guide To Dementia
Conumer Issues
- Cash For The Final Days. A Financial Guide for the Terminally Ill and Their Advisors
- Final Choices: Seeking the Good Death
- The Hospice Handbook. A Complete Guide
- Hospice and Palliative Care. Questions and Answers
- Long Goodbye: The Deaths Of Nancy Cruzan
- Sick to Death and Not Going to Take it Anymore
- Unplugged: Reclaiming Our Right to Die in
America
The Dying Process
* Final Gifts. Understanding the Special Awareness, Needs, and Communications of the Dying
* How We Die: Reflections on Life’s Final Chapter
Education
* AIDS: What Teens Need To Know AIDS: Answers To Questions Kids Ask
Family Support
* Living With Life-Threatening Illness: A Guide for Patients, Their Families, and Caregivers
* Dying Well: The Prospect for Growth at the End of Life
* Kitchen Table Wisdom. Stories That Heal
* The Four Things That Matter Most: A Book About Living
* Guide to End-of-Life Care, Handbook for Mortals: Guidance for People Facing Serious Illness
* Hospice and Palliative Care
Health Care Reform
- Curing Health Care. New Strategies for Quality Improvement
- Sick to Death and Not Going to Take it Anymore
Hospitals and death
- And A Time To Die
Living with Life-Threatening Illness
- The Courage To Laugh. Humor, Hope and Healing in the Face of Dying
- Living With Grief: When Illness Is Prolonged
- Ready To Live, Prepared To Die. A Provocative Guide to the Rest of Your Life
- Tuesdays With Morrie. An Old Man, a Young Man, and the Last Great Lesson
- She Came To Live Out Loud.An Inspiring Family Journey Through Illness, Loss, and Grief
Medical Professionals and Their Personal Stories
- Surviving The Fall. The Personal Story of an AIS Doctor
Primary Caregivers: Living with life-threatening illness from their perspective.
- Healing Lessons. A Doctor’s Story Of Love, Loss, and Transformation
Special Topics
- Assisted Suicide. Last Wish
- Women and Aids. Growthouse, Inc. has created a list of books on this issue. http://www.growthhouse.org/books/womenhiv.htm
Professional
- By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water
- Care of the Dying Child.
Oxford Medical Publication - Let Someone Hold You. The Journey of a Hospice Priest
- Caregiving: Hospice-Proven Techniques for Healing Body and Soul
- Children Mourning, Mourning Children
- Coma and Impaired Consciousness: A Clinical Perspective
- Cultural Issues in End-of-Life Decision Making
- Death and Spirituality. Death, Value and Meaning Series
- Death And The Adolescent: A Resource Handbook For Bereavement Support Groups In Schools
- Death Foretold: Prophecy and Prognosis in Medical Care
- Ethical Patient Care . A Casebook for Geriatric Health Care Teams
- Ethnic Variations in Dying, Death, and Grief . Diversity in Universality (Series in Death Education, Aging, and Health)
- Forgoing Life-Sustaining Therapy. How to Care for the Patient Who is Near Death
- Hospice and Palliative Care: Concepts and Practice, Second Edition
- The Four Things That Matter Most: A Book About Living (Hardcover)
- Hospice Care For Children
- Hospice Care for Patients With Advanced Progressive Dementia
- The Hospital Handbook. A Practical Guide to Hospital Visitation
- Hypnosis and Suggestion in the Treatment of Pain. A Clinical Guide
- Hypnosis in the Relief of Pain
- Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians
- Living With Grief Music Therapy in Dementia Care
- Nursing Care of Children and Adolescents With Cancer
- Palliative Care in the Home
- Palliative Care Ethics: A Companion For All Specialties
- Palliative Care Nursing- Quality Care To The End Of Life
- Palliative Care Perspectives
- Palliative Practices: A Multidisciplinary Approach
- The Primer Of Palliative Care
- Symptom Management Algorithms for Palliative Care
- Success With Heart Failure. Help and Hope for those with Congestive Heart Failure
Spiritual Thoughts
- Conscious Dying. Psychology of Death and Guide to Liberation
- The Pagan Book Of Living And Dying. Practical Rituals, Prayers, Blessings, and Meditations on Crossing Over
- The Tibetan Book Of Living And Dying
Volunteers for Hospice
- When Autumn Comes. Creating Compassionate Care for the Dying
- In The Light Of Dying. The Journals of a Hospice Volunteer
Audio and MoviesOn Our Own Terms Video - A Bill Moyers PBS Special, a videotape. KQED-TV,
(Cooper Green Hospital)
News Coverage
“Unlikely Guide to End-of-Life Decisions: Computer
(Henry Ford Health System)Audiovisual
- With Open Eyes - series in association with Bill Moyers’ “On Our Own Terms.” KQED-TV,
San Francisco , CA. 2000.
(University of California, Davis, School of Medicine) - Palliative Care in Nursing Homes, two 10 minute video tapes and slides with bibliography and resource list to be used for nursing home staff development.
Geriatric Education Center at theUniversity ofPennsylvania .
(University of Pennsylvania, School of Nursing) - Bringing Palliative Care Home to Patients Engaged in Clinical Trials: An Interview with Joan Blais.” Innovations in End-of-Life Care, 5(4): 2003. www.edc.org/lastacts (University of California, Davis, School of Medicine)
Movies
A Family Undertaking (home funeral)
Lasting Images (documentary-burial alternatives)
Intimate Universe: The Human Body - The End of Life (documentary)
Products
Unique Funeral Products http://www.uniquefuneralproducts.com/blog/
Interview with Khris Ford
March 27, 2008
In January 2008, I interviewed
Khris, what got you into the work you are doing?
I think what got me into the work, really, is a lifetime of life losses. I lost siblings as a child, my father abandoned us and I grew up curious about the fact that I saw some people around me who were dealing with these losses in ways that clearly made them more, and other people around me who were dealing with them and they were diminished. I was pretty curious about that as my life was going on; I wondered why that was. Some people seem to be challenged and grow out of the experience and others were paralyzed. I certainly didn’t verbalize that as a kid but I did grow up curious about death, grief and about loss.
Hospice, the Evil Moneymaker
March 26, 2008
The following is a very interesting article by the Hospice Association of America, “Hospice Facts and Statistics,” which brings together a report by the Medicare Payment Advisory Commission (MedPAC) as well as information from other entities.
I just have a few comments.
All of us know that earlier access to quality palliative care and earlier entry into a hospice program is what will relieve the most Read more
Terminal Diagnosis & Living
March 25, 2008
I’ve never been diagnosed with a terminal illness (prognosis of 6 months or less) and I have no idea how it would feel to hear those words. I can only imagine it–based on all the families I have walked through this with as a hospice case manager and in going through this with my family.
Both of my grandfathers, grandmothers and my mother all died from cancer. One of them lived for Read more
Some Medicaid resources in Austin Texas
March 25, 2008
Of course, you accept full responsibility for investigating the suitability of any of the people and resources listed below. I am not endorsing them.
If you find any of them to be below standard or not in service any longer, please let me know.
Medicaid Managed Care
Texas Medicaid and Healthcare Partnership
Doctors
Dr. Sara Bartos, internist, (512) 476-9934
Capitol Area Mental Health Center, 302-1000. sliding mental health services. Ask about their current scholarship programs for women for free services. Sliding scale starts at $10 per session.
Dr. Jay Fogelman, psychiatrist, 454-4667
Eye Care
Dr. Kristin Sargent, 327, 7000
Dr. Jeffrey Lane
Dr. Wishoff, 327-3332
Medical Transportation Program - Medicaid patients in
St. David’s Community Health Foundation
Castle Dental in Barton Square Mall, (512) 328-4867
The Sleep Disorders Clinic of Central Texas
Liberty Medical delivers directly to the home. free diabetic supplies for Medicare/Medicaid recipients
Wellness Life Systems., For free diabetic shoes and heating pad. They also offer diabetic supplies.
Ascensia. When a person asked for information, they used to send a free diabetes control monitor with strips, lancet, and carrying case along with coupons and newsletter.
CareConnections provides free housing referral for the elderly.
State Medicaid Information
Centers for Medicare and Medicaid Services
Are you eligible for Medicaid?
Elder Articles
March 24, 2008
I will be building this list of articles over time.
There are so many websites and organizations out there already providing resources. I want to help in a different way by providing mostly articles and you can go from there.
What I’ll do here is attempt to give a few leads that may simplify things (or not). 
Articles of Interest
Family
A Troubling Abundance of Care
Consumer Report Guide for Nursing Home
More Elderly Dying from Falls
Medical Illiteracy Deadly for Older People
Professional
Palliative Care in Parkinson’s Disease: Implications for Neuroscience Nursing
Celebrants
March 24, 2008
In a nutshell, when you see that someone is a certified Celebrant, what that means is they have had specialized training in conducting memorial and funeral services.
I did this training and I can tell you that it is an in-depth and insightful study of how to be of maximum service and a conduit of healing for the family from the very first meeting. What is healing about this is the way information is gathered through the family meetings, the way the eulogy is written and the deliverance. All this is done by the same person and they spend anywhere from 5 to 15 hours working with you and on the entire service. Also know they act as a ‘funeral planner.’ They coordinate the service between the funeral home and your family, making sure all is in place.
They help you select music, figure out the ceremony, etc. They are a guide. They are definitely worth the extra cost. If you don’t have a religious affiliation with a church or you do but don’t have a relationship with the clergy, know you have options besides who is available at the funeral home. Funeral home directors are beginning to know about this and get trained in it as well. Ask if they have one.
When a funeral home does not have someone to do the service, what they do is hire a chaplain to do it. They have a list of pastors they hire for this purpose.
How much time have you ever known a chaplain (one you don’t know) to spend with you when planning a memorial service or funeral? How often have you sat in a service and it was evident the person was very unfamiliar with the deceased?
Unless you have a prior relationship with one, the Celebrant doesn’t know your loved one either of course. But the difference between a Celebrant service and most of the others that are being officiated by a stranger is like night and day. OK, I guess you can tell I have the utmost respect for Celebrants and the training they receive. And since any service is only as good as the person conducting it and organizing i
t, a Celebrant is a great person to get in contact with first.
If you are interested in training, there are 2 main places to get it. They are
If you are looking for a Celebrant, here are a couple links:
Bereavement Verses
March 24, 2008
Below are some verses from various sources.
Visit often. Light a candle in your soul, and place a flower at the grave above her heart.
~Sasaki Yok
Dig the grave and let me lie.
Glad did I live and gladly die,
And I laid me down with a will.This be the verse you gave for me:
Here he lies where he longed to be;
Home is the sailor, home from sea,
And the hunter home from the hill.
~Robert Louis Stevenson, Requiem (his epitaph)
With a wreath on my chest I won’t be ‘at rest’
To a hole in the ground with just strangers around
Or pop me right under a nice floribunda
Then I can grow roses as I decomposes.
~Joyce Fothergill, A gardener’s last wish,
An old monk was once asked why he cared for ancient graves, and why he cleaned the stones to preserve the writing carved there. His reply was simple: “They still have their names. They will always have their names.” A life infused with love has consequences that reach beyond time—ensuring that names, and places, and memoreies of what was still are, and always will be. They are not dead, can never die.
~Gregory & Suzanne Wolfe, Climb High, Climb Far
Let no one weep for me,
or celebrate my funeral with mourning;
for I still live, as I pass
to and fro through the mouths of men.
~Quintus Ennius
All of the following poems by ~Sri Chinmoy
Death is not the end.
Death can never be the end.
Death is the road.
Life is the traveler.
The soul is the guide.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The body has death, but not the soul.
The body sleeps, the soul flies.
The soul-stirring words on death and the soul in this chapter of the Gita, let us recollect.
“Even as man discards old clothes for the new ones, so the dweller in the body, the soul,
leaving aside the worn-out bodies, enters into new bodies.
The soul migrates from body to body.
Weapons cannot cleave it, nor fire consume it, nor water drench it, nor wind dry it.
This is the soul and this is what is meant by the existence of the soul.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Death is at once
The end of the body’s
Old journey
And the beginning of the soul’s
New journey.
…and He will raise you up on eagle’s wings, bear you on the breath of dawn, make you to shine like the sun, and hold you in the palm of His hand.
~Michael Joncas, excerpt from Eagles Wings
And yet, I will stand it.
Had I not loved so very much
I would not hurt
So much
For goodness knows
I would not want to diminish
That precious love
By one fraction of an ounce
I will hurt and I will be grateful
To the hurt
For it bears witness
To the depths
Of our meaning
And for that I will be
Eternally grateful.
~author unknown, Love and Gratitude
May the wind be always at your back
May the sun shine warm upon your face
May the rains fall soft uon your fields
And until we meet again
May God hold you in the palm of His hand.
~Irish Blessing
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.
~Mary Frye
you lose your umbrella against bad weather.
May his sun be your light, say the Armenians
When your father dies, say the Welsh,
you sink a foot deeper into the earth.
May you inherit his light, say the Armenians.
When your father dies, say the Canadians,
you run out of excuses.
May you inherit his sun, say the Armenians.
When your father dies, say the French,
you become your own father.
May you stand up in his light, say the Armenians.
When you father dies, say the Indians,
he comes back as the thunder.
May you inherit his light, say the Armenians.
When your father dies, say the Russians,
he takes your childhood with him.
May you inherit his light, say the Armenians.
When your father dies, say the English,
you join his club you vowed you wouldn’t.
May you inherit his sun, say the Armenians.
When your father dies, say the Armenians,
your sun shifts forever.
And you walk in his light.
~Diana Der-Hovanessian, Shifting the Sun
Then Almitra spoke, saying, “We would ask now of Death.”
And he said: You would know the secret of death.
But how shall you find it unless you seek it in the heart of life?
The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.
For life and death are one, even as the river and the sea are one.
In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?
Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountain top, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.
Khalil Gibran, On Death
Thank you for the “yes,” your smile always gave me
When we met.
Thank you for telling me it was the little things in life
Like my phone calls that kept you going.
Thank you for listening to my sorrows and then giving me
Encouragement when I needed it.
Thank you for seeing the pain behind my smile and giving me
Comfort.
Thank you for the admiration and respect you gave me.
Thank you for loving me for who I am, and not expecting
More or less from me.
Thank you for the many hours you gave me sitting in your
Garden. Time is Precious.
Thank you for your humor and how you kept me laughing.
Thank you for the grace and elegance you added to our
Every meeting.
Thank you for the high standards and integrity you demanded
From yourself and those around you.
Thank you for seeing the best in me and not letting me forget it.
Thank you for the stubborn independence and self reliance that kept you
Strong and led the way for me.
Thank you for your love of beauty, both the inward and the outward,
and how your sharp eye sharpened mine.
Thank you for believing in me and wanting me here, with you.
Thank you for loving me and telling me so.
Thank you for choosing me as friend, sister, family.
~Christine McAuliffe, Roberto
visit Memorial Keepsakes for other bereavement poems and verses
Dying: You can’t do it wrong.
March 21, 2008
As a hospice volunteer I am blessed to be included at the end of people’s lives. My daughters and friends sometimes ask me how I can do it …. thinking that it is icky or heart-wrenching.
But to me I am the one receiving the benefit … not necessarily the person!
As a volunteer I get to see many approaches to the end of life. Some people
From the ‘Help the Hospices’ Website
March 16, 2008
(the following article in its entirety is from the Help the Hospices Website)
What is World Hospice and Palliative Care Day?
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.
The theme for World Day 2008 which will take place on October 11th is “Hospice and palliative care: a human right”.
When does World Hospice and Palliative Care Day take place?
World Hospice and Palliative Care Day takes place on the second Saturday of October every year and Voices for Hospices takes place on the same date every two years. Future dates are:
- October 11th 2008 – World Hospice and Palliative Care Day
- October 10th 2009 – World Hospice and Palliative Care Day with Voices for Hospices
What are the aims of World Hospice and Palliative Care Day?
- To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
- To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with terminal diagnosis and their families.
- To raise funds to support and develop hospice and palliative care services around the world.
Who organises World Hospice and Palliative Care Day?
World Hospice and Palliative Care Day is organised by a committee of the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide. To view members of the organising committee, go to http://www.worldday.org/partners.asp.
What has happened on previous World Hospice and Palliative Care Days?
Every year approximately 70 countries take part in the celebrations with activities including public awareness raising campaigns, advocacy with policy makers, fundraising events and public launches.
Activities that took place in 2007 included the launch of the World Health Organization module on palliative care.
Find out more about previous World Hospice and Palliative Care Days.
World Hospice and Palliative Care Day 2007.
World Hospice and Palliative Care Day 2006.
For more information, about World Hospice and Palliative Care Day 2005, please read the evaluation
Executive summary
Full evaluation
To view photographs from previous events, go to the World Hospice and Palliative Care Day and Voices for Hospices photo library at: www.worldday.dk
Who can get involved?
The day is for anyone and everyone who cares about or is involved in hospice and palliative care anywhere in the world. If you are an organisation or an individual, with or without experience of hospice and palliative care, you can do something to support hospice and palliative care worldwide.
How can you get involved in World Hospice and Palliative Care Day 2008?
To get involved with World Hospice and Palliative Care Day, visit the Get involved page. This gives you ideas and suggestions on what you can do on the day to support people living with life-limiting illnesses and their families.
Contact us
Please contact the organisers for any information or queries that you may have on worldday@helpthehospices.org.uk or call +44(0)207 520 8250.
About hospice and palliative care around the world
