Our Final Journey

Patient Resources

Tools For Viewing
Let's Talk About It
Section 1 - Assistive Technology
Section 2 - Divorce Issues
Section 3 - Drugs/Medications
Section 4 - Checklist, Documents, Forms
Section 5 - Employment Issues
Section 6 - Estate Planning
Advanced Directives & DNR's
Section 7 - Caregiver Resources
Patient Quality of Life: Should Doctors Guess It?
Incontinence Care
Section 8 - Children Seriously Ill
Children of The Chronically Ill
Siblings of Children with Special Health Needs
Guides To Disability Issues
End Stage Hospital & Home Care
Child With A Serious Illness
Individual Family Service Plan (IFSP)
Camps-Special Needs Children
Children's Wish Foundations
Section 9 - For Kids
Section 10 - Family Resources
Section 11 - Patient Resources
Section 12 - Financial Aids
Section 13 - Insurance
Long Term Care Insurance
Section 14 - Legal
Section 15 - Long Term Care
Section 16 - Symptom Support
Section 17 - End of Life
Section 18 - Funeral Planning
Section 19 - After Death Occurs
Hospice FAQS
Symptom Support
Behavoir Strategies
Ill Person's Feelings
Caregiving & Family Harmony
Caregiver Grief ~Article
End of Life
Comforting A Dying Person
End Stages of Life
When Someone Dies
Funeral Planning
Bereavement Fares and Discounts
Common Bonds of Caregiving
Tips For Helping Your Friend
About me
Free Greeting Cards
Estate Planning Definition
Living & Other Trusts
Wills & Beneficiaries
State Laws On Wills
Conservator~Guardianship Definitions
Insurance Issues
Avoiding Probate
Prescription Drug Program I
Prescription Drug Cards II
Disability & SSDI Insurance Questions
Long Term Care Insurance
Employment Issues
Divorce Issues
State Laws-Statutes
Making A Personal File
Emergency Info Form
Emergency Planning
Health Care Surrogate
Forms, Checklist
Family Resources
Patient Resources
Rehab Tools-Assistive Tech. Categories
State Map-Ombudsman Program
NH Your Rights-Fact Sheets
Nursing Homes and Your Rights - Factsheets for some seriously ill or their caregivers.
Long Term Care-Facts & Rights
State & Federal Resources
Drug Resources
Grief & Sorrow
When death nears - Signs and Symptoms
Some Facts About Artificial Nutrition and Hydration
Things To Consider-Artificial Nutrition and Hydration
                     Patient Resources
Advice to remember in those first few days after you learn the bad news;  things you need to know from your doctors and other health care staff

A Guide To First Steps (after learning diagnosis) - From "On Our Own Terms" Bill Moyers on dying: some suggested first steps for those facing a serious illness:
A . Personal Dignity And Privacy;  B. Informed Participation; and  C. Competent Care
Communicating Your End of Life Wishes(PDF Format) - When it comes to creating memories and sharing in significant life events, the family is the focal point for commemoration and celebration.  We plan for weddings, the birth of a child, going off to college, and retirement.  Despite the conversations we have for these life events, rarely, if ever, do we have conversations about how we want to live in the final phase of our lives & until a crisis hits.   This document helps.
Creating Your Own Funeral or Memorial Service -From Beyond Indigo, the following articles written for patients.  Click on topic to article.
When you are seriously ill, you may find this procedure, called cardiopulmonary resuscitation (CPR), to be worthless or even deeply disturbing. While you may be grateful for the time you have, or at least willing to endure whatever time fate hands out, you might well not want someone to disrupt your time of death with a flurry of activity that is doomed to have little effect.
from Handbook For Mortals
People with very serious disease may prefer not to have a ventilator or to have one removed. Gives reasons not to use a ventilator.
Physician Information:  Depression saps a person's energy, steals the pleasure in life, and even makes it hard to eat, sleep, talk, concentrate, or hold down a job. Just recognizing depression can be a sizable hurdle in itself. It may seem impossible to believe right now, but depression is treatable. You don't have to--or deserve to--live with such an empty feeling.
Ethical wills: preserving your legacy of values for your family
Today, ethical wills are most often written and shared while the writer is still alive. When you write an ethical will, you learn a lot about yourself. It can provide a sense of purpose and a sense of control in your life. It is a way to affirm the past and be positive about the future. It allows for putting your personal "signature" on what universal values mean to you (e.g., love, truth). It opens the door to forgiving others and being forgiven, which heals relationships.
from Handbook For Mortals
Consider how you can best meet the challenges that await you. Be compassionate toward yourself. Allow yourself to find a measure of joy in your life, despite the sadness you are sure to feel. Extending the same respect, concern, and affection to yourself that you would offer someone else will help you live fully while dying.
Finding Meaning - Handbook For Mortals - Spirituality, religion and relationships.  We each get our "brief time on stage," and then we are gone. Sometimes everything can seem so pointless. Why bother to live? Nothing is so deeply human as the search for meaning. Most of us seek life's meaning beyond the boundaries of our physical life. Many discover that finding meaning that transcends physical limits becomes important to them as they try to live fully despite serious illness. Such searching takes many forms. Some pursue meaning through their religious faith, some in family and friends, others in good works or the goodness of humanity, and others in nature. However you find meaning, your search for it is ordinarily one of the most important projects for the end of life.
Many people say that they do not not want to be tied to machines at the end of life, but how does one get "just the right amount" of treatment? Many treatments are started because there is still some real chance that the patient will improve. Even if everyone thinks the patient is dying, some treatments may be started in hopes of improving comfort. So artificial life support may become an issue for discussion or decision, even if you have plans not to use such treatments when you are "terminal" or the situation is "hopeless."  Artificial nutrition; Thinking about life-sustaining treatments; Trial of treatment and Stopping treatment.
A life-ending illness can give you time to say good-bye to people you love and care about.
Handbook For Mortals
People are afraid of dying alone or being attached to life support in a hospital.  Some fear running up huge medical bills that will bankrupt their families. And many fear the loss of dignity that comes with being very ill and dying. But when you are dying, or watching someone you love die, the issue hits home, leaving you feeling over-whelmed, helpless, and afraid. Thinking about hastening death, before it becomes an urgent question in your own life, can help you to understand your current options and to discuss your fears with your family or health care team.
Helping Yourself Live When You Are Dying - Acknowledge You Are Dying; Questioning the Meaning of Life; Accept Your Response to the Illness; Respect Your Own Need For Talk, For Silence; Telling Your Family and Friends You Are Dying; Be an Active Participant in Your Medical Care; Be Tolerant of Your Physical and Emotional Limits; Saying  Good-bye; Finding Hope; Embracing Your Spirituality; Reaching Out For Support
In Adobe/PDF format, bottom of article "Where To Start" tips to help you talk to doctors, loved ones and yourself.
from Handbook For Mortals
Regardless of your illness, you are likely to share many concerns with others who face life-threatening disease, including the fears, worries, and needs for information and support that accompany this critical time in your life. Your particular illness will shape some of what you can expect to happen, and even how much can be predicted.  It helps to know that doctors often can give only very general guidance on how long you will live, and what problems are likely to arise.  Talking about your prognosis; Questions you want to have answered; Keeping up with your prognosis; concerns about: heart disease/cancer/lung disease/kidney failure/HIV-AIDS/dementia and dying when very old.
Let The Choice Be Mine-Your last wishes  (A book $6.00 plus $2.00 S/H )
"Let The Choice Be Mine" is a personal guide/workbook designed to record personal wishes and information that will be required when a death occurs. It is personal, easy to use, and can be completed in the privacy of your own home without any outside influence of any kind. The ultimate gift to those we leave behind is to make our wishes known, in writing. Every adult should complete this book, for their own peace of mind and for the benefit of their family.
Dear Doctor: I wish to inform you of my views about decisions to be made at the end of my life: a letter informing your doctor of your views about decisions to be made at the end of your life
Handbook for Mortals
Living with a serious illness can open up an unexpected variety of new possibilities. Serious illness can be a time of growth, meaning, and healing. Many people find, often to their surprise, that the period of time when life may be short is a very precious time. When you are dying, you should do those things you have always wanted to do. Families and friends may want to hear your old stories one more time and to share with you their hopes and dreams and worries. They may look to you for blessings and advice. You and those you love will often look to a shared faith in God, nature, and each other to make some sense of life and death.
Planning Ahead - Handbook For Mortals -Most of us do not plan for serious illness and death. And many of us feel that if we dont talk about bad things, they wont happen to us. However, talking, planning, and being better prepared for the end of life can let you live fully and more comfortably in your final days. Have you thought about the care you want during a severe illness or as you are dying? Have you talked with your family about plans to ensure you will get the care that you want? When you are very sick, you are likely to have some times when you cannot say what you want done. By deciding some things ahead of time, you can have a say in your care.  Why should I make plans now?  Values History Question-naire; Definition in Advance Care planning; Talking to family and completing forms; Questions to ask your doctor to help you plan ahead; Making Sure your wishes are respected and followed; What else should I plan for?  Questions and answers about Advance Directives.
It's All About Talking: This booklet introduces you and your loved ones to the issues surrounding end-of-life decision making. It's all about talking- talking to your loved ones about your health care preferences; talking to your doctor about your options so that you can make informed decisions. Talking before a crisis can help you and your loved ones prepare for any difficult decisions related to health care at the end of life.  Exploring your thoughts and talking about your choices is an ongoing process. Start by planning for your end-of-life care
Handbook For Mortals
When you put something into words, sometimes it is more "real" than if you hadn't mentioned it. Often, however, the future becomes less threatening when you name and describe it. Until then, your thoughts and feelings are often too vague to confront and manage. And, of course, you might be afraid of what kind of response you will get when you speak of dying, pain, and fear of what is likely to happen to you. Although doctors are supposed to take care of sick and dying patients, you might be afraid your doctor will think you are "giving up" and give up on you, too.  Know what you should expect from your doctor; choosing a doctor; Getting the most out of each visit with your doctor; dDress for success; Set the stage for a successful conversation; When you are hesitant to ask questions.
Tapestry of Support
A description of how patients can create a support system for themselves, including a medical team, hospice team, clergy, social workers, family, friends, co-workers and others, and directs users to some of the many on-line resources available. No registration is required.
Telling your story - Handbook For Mortals - We are all storytellers. For most of our lives, we do just that -- tell stories about our day, or something that happened last year, or when we got married or had our first child. Dying is the end of this lifes story. People often find hope and comfort, and a sense of closure, by telling stories about their lives to others. You might ask a close family member, a trusted friend, a health care provider, or a counselor to listen to your story.
10 questions to consider in writing your life's story.
Therapy Options-The Healing Arts
From "On Our Own Terms" Moyers on Dying series. Click on Healing Arts: Healing depends on more than medication alone. Patients grappling with a serious illness also need treatment that addresses their psychological and emotional needs. That's where so-called "expressive" therapies, ranging from yoga to poetry readings, are gaining ground. In the past ten years, hospitals around the country have made increasing use of these therapies to improve patient mood and morale by unleashing creative energies. Links to several related websites.

Hindu Spiritually Awakening
In reality, there is no death. In reality, there is no death because there is no individual 'self' or 'I' who could die. In reality, there is only that Primordial Consciousness or God which, though appearing in myriad forms, is Itself empty of all forms and therefore without birth or death. This Consciousness is who I am. This Consciousness is also who you are. Thus, whether you Realize it or not, your sense of being a separate self is a delusion, and ultimately, so is the death of that 'self'. Until this Realization is attained, however, the delusion of self, and therefore of death, will persist. If you are close to death and cannot read this book in its entirety, TURN IMMEDIATELY TO CHAPTERS. These chapters describe specific meditations (to be used during the hour of your actual death) which you should START PRACTICING NOW. Then, if you have time, go back and read the rest of the chapters in the order presented.
TWO The Death Prayer
THREE The practice of Perfect Sacrifice
FOUR Effortless Contemplation
Tough Questions To Ask Family, Doctor, Clergy  - A list of questions you should consider asking your physician, family, and clergy.  Before you have these conversations, take some time to think about what you want to know and make a list to help you remember!
Thoughts for Someone Who's Dying  - Our culture does not handle dying very well. It's no longer a part of our everyday lives as it was for our ancestors. We don't look upon it as directly as they did. We don't live with it as closely. Most of us don't participate in it as personally. So when the news comes that we're dying, we're at a definite loss. We have so little background for knowing what to do. It all seems so unfamiliar and frightening. This can be a very upsetting time for everyone. Following are various ideas to help you through this time.
Turning Points in Illness and Care
People who suffer from chronic degenerative diseases can reach a point where they feel that the benefits of treatment are no longer worth the pain or discomfort.  Read this article on things you should ask.  Also has a link to a Guide For Choices and Conversations to have, in PDF format.
Tube Feeding (Fluids and Food)- Handbook For Mortals  - As death approaches, you will not "keep up your strength" by forcing yourself to eat when it makes you uncomfortable. However, you should also know that a decrease in appetite is natural and eating less may increase, rather than decrease, comfort. When are feeding tubes beneficial?  Can you try it for a while then stop?  Choosing to stop eating and drinking

When You're Ill or Incapacitated
Where you are ill or incapacitated affects how you are ill or incapacitated. You may be lying in a hospital bed when you read these words, or you may be in another type of healthcare facility. You may be at home, or in the home of another. Every environ-ment establishes its own limits and calls for unique responses.  You'll need to adapt the thoughts that follow for your own setting and for the changing course of your life. Some ideas will work best early in your experience, while others will be better suited for later. You'll know. Use what will help you. Pass over what doesn't. Person-alize this time to make it your own. Develop your own notions. Devise your own solutions.

You may have lost some part of yourselfyour physical health, your emotional well-being, your spiritual wholeness. You may be leaving behind your job, or your home, or your family. You may be called upon to say farewell to your innocence or security, your hopes or dreams, your past or future. The writing here is from the book, Welcoming Change: Finding Hope in Lifes Transitions by James E. Miller. It describes how all human transitions are made up of a three-fold process, involving a beginning (which is really an ending), an interim period (when it seems like not much is happening but actually a lot is going on), and an ending (which is really a new beginning in life). There is also a Willowgreen videotape entitled Nothing Is Permanent Except Change: Learning to Manage Transition in Your Life. Both are available for purchase.
Ultimate Emotional Challenge
A dying person is grieving the loss of control over life, of body image, of normal physical functions, mobility and strength, freedom and independence, security, and the illusion of immortality. He is also grieving the loss of an earthly future, and reorienting himself to an unknowable destiny. At the same time, an emotionally healthy dying person will be trying to satisfy his survival drive by adapting to this new phase, making the most of life at the moment, calling in loved ones, examining and appreciating his own joys and accomplishments
The below books may be ordered anywhere or through the  Amazon Connection
Just put the following titles into the "search" block. Other books listed on this page must be purchased from the link to the article/info.
by Joanne Lynn
Amazon - The most referenced book above
Creating Your Own Funeral or Memorial Service - The workbook is very thorough. It helps you to make the many choices necessary to designing your funeral or memorial service. Sections include: a funeral or a memorial service?, your body, the role of the funeral director, music, readings, eulogy, passing on roles, life storytelling, plants and flowers, ceremony, program, dress, procession, location, guest book, memory display, altar, photos, invitations, potential difficult situations, and cost. The workbook includes many, many resources, lots of creative suggestions, and a very helpful bibliography.