Pain Resource List (from PBS Frontline “Living Old” program)

Did anyone watch the PBS Frontline program called “Living Old”?  It was
worthwhile.  Here’s the pain resource list from the program.  I’ve added web addresses and quite a few notes.

And these pain-related resources are probably worth mentioning here too:

» Partners Against Pain
A group providing information, education and advocacy on better pain management.

» American Pain Foundation
A foundation dedicated to eliminating the undertreatment of pain.

» National Pain Foundation   –> this is different from the link provided by “Living Old”
Another resource site for managing pain for families and caregivers.

End of Life Issues Resource List (from PBS Frontline “Living Old” program)

Did anyone watch the PBS Frontline program called “Living Old”?  It was worthwhile.  Here’s the “End of Life Issues” resource list from the program.  I’ve added web addresses and quite a few notes.

» Growth House: Guide to Death, Dying Grief, Bereavement and End of Life Resources
A site offering a wide range of help and guidance for families/caregivers of the elderly and those with life-threatening illnesses.

» Handbook for Mortals –> these are excerpts available online; you can also buy the book from (there’s a link on this page)
An online consumer guide for end of life care. Chapters include: Living with Serious Illness; Enduring and Changing; Finding Meaning; Helping Family and Loved Ones; Getting the Help You Need; Talking with Your Doctor; Advance Care Planning; Coping with Events Near Death; Enduring Grief and Loss.

» Aging with Dignity — Five Wishes
A Five Wishes document helps a person express how they want to be treated if they are seriously ill and unable to speak for themself. According to this Web site: “It is unique among all other living will and health agent forms because it looks to all of a person’s needs: medical, personal, emotional and spiritual.”  One of our founding support group members, Storme, highly recommends this document.

» Center for Practical Bioethics  –> I could not get this site to come up; I did confirm the web address
An organization at the forefront of aging and end-of-life issues and the ethics questions surrounding them, this group is also a resource for policy ideas for the government and other organizations.

» National Hospice Foundation
An organizaiton that promotes hospice care and educates families and professionals about caregiving, terminal illness, loss, and bereavement.

» National Hospice and Palliative Care Organization
Web site of the “largest nonprofit membership organization representing hospices and palliative care program and professional in the United States,” The NHPCO advocates on behalf of hospices, their patients and their patients families.

“Understanding Difficult Behaviors”- recommended book

This post might be of interest to those who have loved ones with dementia — all of the LBD, some of the PSP, and some of the CBD (especially late stage) folks…

There are a couple of great books with practical suggestions on how to cope with Alzheimer’s Disease and similar illnesses. One is “Understanding Difficult Behaviors” by Anne Robinson, Beth Spencer, and Laurie White, 1989, published by Eastern Michigan University.

You can purchase the book at local offices of the Alzheimer’s Association, which are in Mountain View, Lafayette, San Rafael, Sacramento, Santa Cruz, etc.

The difficult behaviors this book deals with are: angry, agitated behavior; hallucinations, paranoia; incontinence problems; problems with bathing; problems with dressing; problems with eating; problems with sleeping; problems with wandering; repetitive actions; screaming, verbal noises; and wanting to go home.

Copied below are some excerpts from the four-page section on “Screaming, Verbal Noises.”



Excerpts from

“Screaming, Verbal Noises”
Understanding Difficult Behaviors

by Anne Robinson, Beth Spencer, and Laurie White
Published by Eastern Michigan University


Physiological or Medical Causes
* hunger
* incontinence (wetness, etc)
* need to go to the bathroom
* fatigue
* need for help changing position in bed or wheelchair
* vision or hearing loss that causes misperception of the environment
* impaired ability to speak or be understood
* acute medical problems that result in feeling ill or pain and discomfort

Environmental Causes
* too much noise
* overstimulation or sensory overload
* use of physical restraints
* upset by behavior of other residents

Other Causes
* procedures which are uncomfortable or not understood, such as having an enema, having a dressing changed, being catherized, etc.
* bathing – person may be cold or feel exposed
* dressing – person may be cold or feel exposed
* purpose of mouth care not understood
* touch/turning/repositioning – uncomfortable or not understood
* fear/anxiety
* feeling threatened
* need for attention
* frustration
* boredom/lack of stimulation


* Have a good medical evaluation to check for illness, infections, pain/discomfort, or impaction

* Provide adequate meals/snacks to minimize hunger

* Institute regular toileting schedule to minimize incontinence

* Change promptly after incontinent episodes

* Try rest periods to minimize fatigue

* Make sure there are frequent (at least every 1-2 hours) position changes if person is bedridden or restrained in chair

* Maximize sensory input. (Check to see whether hearing aids and eyeglasses are in place and working properly.)

* Lower stress; create a relaxing environment:
– minimize noise
– avoid overstimulation/sensory overload
– avoid use of restraints
– play soft, soothing music

* Use relaxation strategies to minimize fear, threat, anxiety. For example:
– try massage/therapeutic touch, stroking person’s head, arms, hands
– try placing your arms around the person and gently rocking back and forth
– talk in a soothing voice
– play soft, soothing music or soothing sounds such as tape of rainfall, waves breaking on shore, etc.

* Try these communication suggestions:
– approach person with soothing voice; call person by his/her name; identify yourself
– explain/prepare person for what is to be done using simple, clear, short sentences
– break task into short steps briefly explaining each one
– think of other ways for the person to communicate, such as using a bell. This can enhance the person’s sense of security by feeling that he/she is able to communicate needs to caregiver

* For staff in long term care settings:
– use consistent routines for activities such as bathing, meals, getting ready for bed; keep to the same schedule each day
– identify staff who work well with certain individuals. Consistency in staffing is important.
– plan time to socialize with the person for a few minutes in addition to assisting with activities of daily living
– encourage participation in meaningful activities to minimize boredom and frustration.

* Softly read to person.

* Medication should be used cautiously when other interventions have been unsuccessful and when the vocal behavior is very stressful to the caregiver(s) and/or residents living in the area. This medication should be monitored carefully by a physician/psychiatrist.


Vocal behaviors are most commonly seen in the later stages of progressive dementia. Many people who shout or cry out are physically immobile – wheelchair or bed-bound. The underlying problem is the person’s inability to communicate his/her needs, wishes, thoughts, etc.


Preventing caregiver stress and depression

This good article on caregiver stress was written by the Detroit Free Press in late October.  (I couldn’t find it on their website, however.  I found it on another newspaper website.)

The author lists “five scenarios that could lead to feelings of stress and depression in caregivers and experts’ advice on how to cope with the situations.”

Four of the stressful scenarios apply to seniors. They are:

1- financial stress

2- moving a person who can’t

3- driving all the time

4- refusing help

Here’s a link to the article:

Help for the helpers
How to prevent stress and depression
Detroit Free Press
by Cecilia Oleck
October 23, 2006