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
http://www.growthhouse.org/
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
http://www.growthhouse.org/educate/flash/mortals/layouts/frameset1.html –> these are excerpts available online; you can also buy the book from Amazon.com (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
http://www.agingwithdignity.org/5wishes.html
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
http://www.practicalbioethics.org/  –> 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
http://www.hospicefoundation.org/
An organizaiton that promotes hospice care and educates families and professionals about caregiving, terminal illness, loss, and bereavement.

» National Hospice and Palliative Care Organization
http://www.nhpco.org
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.”

Robin


 

Excerpts from

“Screaming, Verbal Noises”
in
Understanding Difficult Behaviors

by Anne Robinson, Beth Spencer, and Laurie White
1989
Published by Eastern Michigan University

POSSIBLE CAUSES

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

COPING STRATEGIES

* 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.

OTHER CONSIDERATIONS

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:

bismarcktribune.com/news/local/help-for-the-helpers/article_6551ef7c-2389-5a17-9d16-34f296166a77.html

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

Robin

 

“Make a Place for Your Illness And Put It in Its Place”

This wonderful article about coming to terms with a chronic illness was written by a former family therapist.  She founded a website called SelfCareConnection.com.  [Editor’s note: the website no longer exists.]  This article was posted awhile back on a website about dealing with neurological disorders.

Robin

—————————————

Make a Place for Your Illness And Put It in Its Place
By Pauline A. Salvucci
Posted on SelfCareConnection.com

“A place for everything, and everything in its place.” That may be a fine idea if you’re eyeing the clutter on the living room floor, or a pile or two of old magazines and catalogs collecting dust in a
corner. But what has it got to do with chronic illness? A lot.

Chronic illness is never a welcomed guest in anyone’s life. However, when it becomes a visitor in yours, in many cases, it’s there to stay. How you cope with your illness will determine, in great part, how well you live your life. Of the three primary factors which measure your ability to cope: your attitude, the social context of your life, and the quality of resources available to you, your
attitude becomes the foundation upon which the others build.

Making a place in your life for your illness may sound like a strange thing to do, but it’s a crucial step in learning how to cope with illness and putting it in its place. Here are some suggestions:

Acceptance and denial are normal steps toward making a place for illness. When you begin to accept your illness, you open yourself up to see what’s on your plate. Then you can begin to interact with it and make a place for it. When you deny your illness, you close yourself off to yourself, and you shut down. Feeling both acceptance and denial are normal responses to chronic illness. Being sick makes you different from healthy people. And, if your illness isn’t
visible, you may deny it more than if it were. Accepting illness is a process. It doesn’t happen all at once. Don’t be harsh on yourself when you fluctuate between accepting your illness and denying it. Acceptance isn’t something you do once and for all. Acceptance lives in the present moment. Little by little as you accept your illness,
you make room for it in your life.

Adapting to change takes time and patience. Like an onion, you peel off one layer of change at a time. The changes you often are faced with will stretch and challenge your ability to adapt. You may have to let go of, or even say goodbye to some parts of your life, either for a time, or perhaps permanently. Grieve this loss. Perhaps create a ritual to say goodbye, but don’t deny those parts of your life which you enjoyed and which were important to you. They are a very real part of your history and deserve your respect. Your life is
different than it was before you became ill, but don’t treat your past and the things you enjoyed as if they never existed. As you make the changes your illness requires, you can become more flexible and creative in adapting to change.

An idea that may help you is to keep a journal of the changes you’ve already made and how you made them. This can serve as a reminder of your accomplishments and as a guide for making other changes. As you develop a greater degree of flexibility in adapting to change, the easier change becomes.

Befriend your illness as a part of your life. Chronic illness is your daily companion; you already know how it affects your body. Now get to know what you feel and think about it, and especially how you
treat it. If you consider your illness an enemy to be crushed, or an unwelcome guest which you refuse to tolerate, or even an interloper you must annihilate, how will you allow your illness to be what it is, a part of your life which you can learn to befriend? Do you remember what Lincoln said about a house being divided against itself unable to stand? If you’re divided against yourself by
refusing to know your illness, or by waging war against it, how will you come to befriend it? Consider giving your illness a name and talking with it. Speak from your heart and your passion. Write down everything you think and feel about it. Don’t keep your thoughts running around in your mind creating havoc. Then, listen to what
your illness says to you in return. If you find this difficult to do, don’t be discouraged. It is difficult, but there are rewards. An uneasy alliance is better than none at all.

Do you feel as if you’re losing yourself? Do you feel as if your blue moods are turning into dark depression? Is inertia increasingly becoming more a part of your life? Do you do less for yourself on
the days when you could be doing more? Do you isolate yourself from your loved ones and friends? If over a period of time, you are regularly experiencing these feelings and can’t shake them, don’t hesitate to find professional help. Ask your doctor to refer you to a therapist whose specialty is working with people with chronic illness. These therapists can help you to make your way through
difficult times. Yes, it’s important to talk with your friends and family, but talking with a professional can be very freeing. They are available to help you sort out your experiences and the many feelings and thoughts you have about yourself and your illness. This isn’t the time to “tough it out”, or attempt to dismiss your feelings with a mind over matter mentality. Allow yourself to get whatever help you need. It can make a real difference in your life.

How often during the course of a day do you talk about your illness or refer to it? Do you feel it’s taking more of your time and energy than you would like it to? That can happen, especially when you are initially diagnosed and you’re learning about your illness and trying to figure out your relationship with it. If it becomes a habit, and you feel as if you’re losing perspective, here’s a way to
regain your balance. Create “talk space”. Choose a comfortable place in a room in your home and make time to talk about your illness with your partner and your family. Let them know what you’re experiencing and thinking. This is a time for honest sharing, for you and for your loved ones. Allow this “talk space” to be the place and time where you discuss your illness. Keep the rest of your home an “illness free talk zone”. This will allow you and your family to enjoy one another’s company and conversation without reverting to
the topic of illness.

Seeing with new eyes doesn’t mean looking through rose-colored glasses. When it comes to putting your illness in its place, you might try seeing with new eyes. When it takes you more time to do just about everything, when simple tasks frustrate you because they’re not so simple to do anymore, when the familiar becomes foreign, when you can not do the many things you once loved doing, maybe seeing with new eyes can help. If you were an artist and can no longer paint, you can still go to museums or art galleries. If you can’t do that, you can enjoy art on the Internet since it offers you access to the world’s best museums, galleries and art exhibits. If you worked with your hands and can no longer use tools to do a job or hobby, teach someone else to do what you know how to do so well. Share your knowledge and lend your expertise. If you loved nature and the outdoors, but can no longer hike, drive along some of the scenic roadways and enjoy the beauty and majesty of nature. Find a way to keep what you have been passionate about in your life. It
takes time, work, patience, spirit and heart to make a place for illness in your life. Seeing with new eyes is both a tribute to courage and the ability to put illness in its place.
Pauline Salvucci, M.A., is a personal coach, founder of SelfCareConnection.com and a former medical family therapist. Her specialty is coaching people at mid-life, particularly those with health issues and family caregivers who are sandwiched” between their families and their aging parents.

Article on Alternative Therapies and PD

PSP Forum –
Sorry for the screwy formatting of this post. These are two emails below that I sent in August ’06 to the local (SF Bay Area) support group on “alternative therapies” (including CoQ10) and Parkinson’s Disease. (I thought the author worked at Scripps but the institution is Cedars-Sinai.) It’s just easier to copy-and-paste rather than re-work the two emails. If you are interested in seeing these sorts of posts from me, note that I am a regular poster on pspinformation.com (Yahoo!Groups). I don’t regularly come to the Forum (because I dislike using anything but email to post and read).
Thanks,
Robin

Date: Wed, 23 Aug 2006 18:38:47 -0700
To: Local Support Group
From: Robin Riddle <[email protected]>
Subject: Fwd: “Alternative Therapies” & PD (Co-Q10, vitamin C, creatine, etc)

This updated email will be of interest to those considering NADH, glutathione, massage therapy, and exercise. There’s also a resource list for additional info on alternative therapies.

The “Alternative Therapies” article provided answers to seven questions. I found an earlier article by the same author, Dr. Jill Marjama-Lyons, that had ten questions. Perhaps three questions were eliminated to fit the article on one page in the APDA Newsletter Spring 2006. The earlier article was written perhaps in 2004 or early 2005. Here are the three new questions along with the exercise question answered again (because the earlier article gave a longer answer), a resource list (books, etc) for holistic therapies (“holistic” is the preferred term), and some info on the author:

Should persons with PD take NADH? Similar to Co-Q10, NADH (nicotinamide adenine dinucleotide hydrogen) is an enzyme that is involved in energy production of living cells. NADH is not a proven treatment for Parkinson’s disease. Several open-label (patients and examiners were not blinded) studies have shown motor improvement in persons with PD who took NADH. One small double-blinded, controlled study of 10 persons with Parkinson’s disease who took intravenous NADH did not indicate that any improvement occurred in patients.

Should a person take IV(intravenous) glutathione for Parkinson’s? Glutathione is not an approved treatment for Parkinson’s disease. Similar to Co-Q10, glutathione levels have been shown to be lower in persons with PD. Despite many personal stories of patients feeling better with use of IV glutathione, currently there are no published controlled studies proving or disproving it as a therapy for PD.

Can massage therapy help people with Parkinson’s disease? Some persons with PD report massage therapy to lessen muscle stiffness (rigidity) and pain, though the benefit is often transitory and last a few hours or days.

Does exercise really make a difference? Exercise of any kind that does not increase one’s risk of falling is always recommended to increase endurance, improve delivery of oxygen to the brain, heart and muscles, increase muscle strength and mass, and improve coordination, balance and flexibility. Exercises such as yoga and tai chi focus on the mind-body connection and improve balance and mobility for persons with Parkinson’s and many PD centers and health clubs offer these exercise classes. Even for someone with advanced Parkinson’s disease, exercise can make a big difference; chair and bed/floor stretches/movements as well as swimming can be performed by almost anyone. (Note from Robin: the last sentence is not in the APDA Newsletter Spring ’06.)

Resource List for Holistic Therapies
(Note from Robin: the author of the article has a book listed below – third item down. It was recommended to me by someone who used to work with Dr. Marjama-Lyons at Cedars-Sinai Medical Center.)

The American Holistic Health Association’s Complete Guide to Alternative Medicine, by William Collinge, M.P.H., Ph.D.

Alternative Medicine: The Definitive Guide, edited by Burton Goldberg (Future Medicine, 1998), features over 400 holistic practitioners

What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness, by Jill Marjama-Lyons, MD and Mary Shomon (Warner Books, 2003)

PDR for Herbal Medicine, (First Edition, 1999) Medical Economics Company

Prescription for Nutritional Healing, by James Balch, MD and Phylis Balch (Avery Penguin Putnam, 2000)

Tyler’s Herbs of Choice: The Therapeutic Use of Phytomedicinals, by James E. Robbers and Varro E. Tyler

Eat Well, Stay Well With Parkinson’s Disease,by Kathrynn Holden, M.S., R.D. (Five Star Living, 1998)

The Brain Wellness Plan, by Jay Lombard, M.D. and Carl Germono

American Holistic Health Association P.O. Box 17400, Anaheim, California 92817 / (714-779-6152/ www.ahha.org

NIH National Center for Complementary and Alternative Medicine (NCCAM) 888-644-6226 / www.nccam.nih.gov

Mind Body Medical Institute 110 Francis St., Boston, Massachusettes 02215 / (617-632-9530) / www.mbmi.org

American Association of Oriental Medicine 433 Front St., Catasauqua, Pennsylvania 18032 / (888-555-7999) / www.aaom.org

Acupuncture Page Listing licensed acupuncturists in each state, www.acupuncture.com

The Homeopathy Home Page www.homeopathy.com

Nutritional Web Site www.nutrition.about.com

About the Author: Dr. Marjama-Lyons received her bachelors degree in psychology from the University of North Carolina in Chapel Hill and her medical degree from S.U.N.Y Health Sciences Center in Syracuse, NY. She completed her internship at the University of Rochester and her neurology residency at the University of Arizona followed by a fellowship in Parkinson’s disease at Kansas University. She was assistant professor and medical director of The Parkinson Center at the University of Florida in Jacksonville, and currently is regional director of PADRECC (Parkinson Disease Research Education and Clinical Center) at the Albuquerque VA Hospital, Director of the NPF Parkinson Outreach Program serving Navajo persons with Parkinson’s and medical director of a new Deep Brain Stimulation program in Albuquerque. She is co-author of What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness published by Warner Books (February 2003) and author of the National Parkinson Foundation Medication and Deep Brain Stimulation Manuals. She is dedicated to patient education and believes in a holistic approach to care and life.

(Note from Robin: The author’s name was misspelled in the APDA Newsletter Spring ’06.)