What are the 5 Steps to Better Caregiving?

Denial’s not a River

We live in a time of tremendous cultural denial of aging and end of life issues. That’s why the Caregiver Revolution is so valuable. It goes right to the heart of the issue. To start, you don’t need to change what you’re doing, you only need to change your attitude.

Acceptance is the key to better caregiving.

Caregiving is usually relegated to being a secondary activity, a burden, and the end of life is seen as a depressing, difficult time. We have found the opposite. Caregiving can be a positive, life changing experience. The end of life can be a time of spiritual growth.

The Preliminaries

You can benefit from caregiving if you’re able to:

  • accept the reality of your present caregiving situation

  • realize the importance of the work that you’re doing

  • make efforts to manage your caregiver stress

  • apply a few simple tools and techniques of mindfulness

It’s that simple. You can succeed with it. That’s our premise…and the promise of our book.

The 5 Steps to Better Caregiving

The methodology is simple. We’ve broken the revolution into 5 simple steps. We help you to get organized, give you the tools to work with stress, and then help you to strengthen your caregiver attention. With this attention you can help others in transition because you know how to stay focused on the direct needs of the present moment during a crisis. In this way you can really be present for those who are dying.

We’ve divided the techniques into five steps. They are outlined below:

Step 1 – Get Organized and Take Care of the Basics

Step 2 – Manage the Stress Associated with Caregiving

Step 3 – Strengthen your Caregiver Presence

Step 4 – Help Those in Crisis and Transition

Step 5 – Provide Spiritual Care and Support for the Dying

The goal of eventually helping others may seem very ambitious to you at this time. It is our sincere hope in writing this book that you become more confident in your ability to handle crises, to deal with end of life issues and to support others at the time of death.

The tools and techniques used here were chosen because they are time-honored and effective. No religious affiliation, creed, doctrine or belief is implied or necessary. Our view of spirituality is that the expression of God (the creator, Allah, Yahweh, the highest power…whatever you want to call it) is in the details. In the beginning we advise that you stay very detail-oriented. In any situation you can intensify your focus on the specifics of that situation and that will serve as a window to a higher spiritual energy entering your work.

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Stages of Dying – Dissolution of the Elements

As discussed earlier, when we think of the stages of dying it is easy to get confused with Kubler-Ross’s 5 stages of grieving when facing death which are widely known as “the 5 stages of loss” as put forth by her almost 50 years ago. They are not stages of dying, they are psychological states; anger, denial, bargaining, depression, acceptance, that her patients were generally noted to go through as they faced death. They have now been widely accepted in describing some aspects of the grieving process, but please note that there is little uniformity in how we grieve, either our own loss or the loss of a loved one.

Here we want to discuss the actual physical stages of dying. And, per relevance to doing readings from a sacred text like the Bible, Ars Moriendi, the Tibetan Book of the Dead or the American Book of the Dead, there are times during the dying process where the consciousness can benefit from being reminded of it’s innate luminous, (enlightened) nature.

This is not to be forced. There is no dogma or doctrine here. It is very important to realize that at these times,  just the simple presence of another being who is grounded in a calm disposition is as helpful as anything. If we have an opportunity to do readings, fine, but most importantly is to always practice equanimity, simple awareness. Be the calm person in the rescue boat out in the howling seas, and everyone around you, especially he or she who is dying, will benefit.

According to the Tibetan tradition: “The bardo of dying begins the moment at which the body will definitely not recover and survive and it lasts until the last breath is exhaled. This bardo is accompanied by certain subjective experiences. In the Buddhist tradition these experiences are explained as the dissolution of the elements. These dissolution experiences include a feeling of heaviness, feeling cold and drying up of the mouth and nostrils. These are a part of the specific signs that death is near. Finally, outer breathing, our normal respiration is distinguished from inner breathing, which is more like circulation of energy. First the breathing stops, then the inner circulation of energy stops.”

“The next bardo is the luminous bardo of our innate nature. In this stage, our innate nature – the basic nature of mind- is totally unobscured for a short while. We can glimpse our basic nature of mind at that moment. This is the same for every sentient being. This quality of mind , this “luminous wakefulness” is revealed to us at that moment- but it may be only a brief glimpse. The tendency to cling to duality is poised to reassert itself, and for most of us, it immediately moves in and obscures the experience of our basic nature.”

From Chokyi Nyima Rinpoche, p. 154 in Medicine and Compassion– Wisdom Publications.

Especially at the time right after dissolution of the elements and now entering the Luminous Bardo of our innate nature, when we get a glimpse of what is  called our ground luminosity, we may benefit from readings, prayers and a presence of equanimity, calmness and Clear Light awareness on the behalf of those around us. According to the Tibetan Buddhist teachings, we want to recognize and remain in the experience of this luminous awareness for as long as possible.

In short form here is the instruction:  “Now the basic luminosity is shining before you; recognize it, and rest in the practice.” Tibetan Book of the Dead, Trungpa, p. 37.

The Clear Light instructions or whatever religious preference one has can be repeated 3 to 7 times. Here is another version:

Now I am experiencing the Clear Light of objective reality. Nothing is happening, nothing ever has happened or ever will happen. My present sense of self, the voyager, is in reality the void itself, having no qualities or characteristics. I remember myself as the voyager, whose deepest nature is the Clear Light itself; I am one; there is no other. I am the voidness of the void, the eternal unborn, the uncreated, neither real nor unreal. All that I have been conscious of is my own play of consciousness, a dance of light, the swirling patterns of light in infinite extension, endless endlessness, the Absolute beyond change, existence, reality. I, the voyager, am inseparable from the Clear Light; I cannot be born, die, exist, or change. I know now that this is my true nature.

–From American Book of the Dead by E.J. Gold.

Let’s expand our discussion of the stages of dying so we may know approximately when the ground luminosity is occurring. A more detailed description of the stages is given by Margaret Coberley, RN in her excellent book,  Sacred Passage.

Dissolution of the elements

  1. Earth dissolves into Water. The mind is now starting to separate from the body. The dying person experiences a feeling of powerlessness and deep heaviness that feels like sinking. He or she complains about weakness and exhaustion. The eyes may roll back and the person experiences mental turmoil. Caregivers may notice that the person actually feels heavier during transfers or when moving in bed. Caregivers can help by elevating the patient’s head, eliminating heavy covers, providing reassurance in clear and direct speech and avoiding emotional heaviness and anxiety (as well as needless conversation) at the bedside.

2. Water dissolves into Fire. Initially the feeling here is of drowning, but it is quickly replaced by dehydration, heat and parchedness. The person may likely withdraw and lose interest in worldly affairs. Her perception of pain may decrease and she will have difficulty swallowing. Ice chips made of water or juice and a damp cloth on the neck or forehead will help. The caregivers should protect the dying from confusion and fright, at the same time informing upset friends and relatives that the dying person is not rejecting or turning away from them, but naturally turning inward.

3. Fire dissolves into Wind. Initially a feeling of being consumed by fire is replaced by a feeling of being very cold. Digestion and respiration weaken. The extremities mottle and the person may require extra clothing. Ordinary consciousness becomes very dim, the mind becomes even more unfocused and the person may not even recognize family members. At this time it is important to avoid disturbing the dying person’s mind. Keep a positive mental outlook at all times around the dying.

4. Wind dissolves into Space. Respiration becomes slow and rattled. A profound silence envelops the dying. According to western medicine, death has occurred. The dying person is no longer aware of external forces. Visions arise according to the predominant mental tendencies. This would be entering luminous bardo of our innate nature. As discussed above. it  is important at this time to do Readings from texts to guide the dying and explain what is happening or speak softly to the dying person, urging him to move onward and merge with the peace, happiness and light (or any religious figure or symbol) that is beckoning.

The final 4 stages of dying involve dissolution of the ordinary mind and the subtle mind. We will talk about these in the next post and need not describe them here except to let the caregiver know that for a period, the dying person is still going through dissolution and that an awareness of some sort exists.

Tibetan Buddhists let the body remain undisturbed for 3 or 4 days to let dissolution occur. This is usually impossible for westerners, but it is important to handle the body with care: avoid jostling, and keep a meditative atmosphere.

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Stages – Good Grief

Before we talk about the stages of physical death we will have a short discussion about what are commonly thought of as the stages of dying followed by a must read article by Meghan O’Rourke published in the New Yorker in 2010.

Elisabeth Kubler-Ross

When we think of stages in relation to dying, we naturally think of Kubler-Ross and her very well known 5 stages of grief from her landmark On Death and Dying, published in 1969. In general, individuals experience some or most of these stages in no defined order after being faced with the reality of their impending death: denial, anger, bargaining, depression, and acceptance. These are not really stages in the dying process but our reaction to the news that we will be dying, and therefore defined as grief. Therefore, it follows that the five stages have since been adopted by many as applying to the grieving process of the survivors of a loved one’s death, as well, and indeed, much later, Kubler-Ross followed her initial text with On Grief and Grieving.

In subsequent years we, (and Kubler-Ross herself) learned that the stages are not truly valid. Grieving is a varied, unpredictable and inherently messy process. Kubler-Ross herself had a complicated end of life process. An excellent article in the New Yorker, Good Grief will guide you some of her journey and through some of the current thinking about grief and the dying process. This is a good place to start before we talk about the actual physical process of dying itself.

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Why do readings for someone who is dead or dying? An examination of the time and timelessness that characterizes physical death.

Why do we do readings? What is it that we are trying to do? If at all, how are we helping?

It has taken me years to understand and formulate the basis of the practice of Labyrinth Reading but I have been getting hints recently, one of which came just the other day. In an online meeting with several people who are familiar with and/or had at some point experimented with the readings, the question was asked, “How can I actually help someone who is dead?”

Now this question is actually about 5 questions, (change which word is accented) and no answers were immediately forthcoming, but after some discussion a few minutes later one member of the group came up with this formulation:

“You have to look at your question to see the answer to it, for your question assumes much in it’s use of the word “dead.” If we reformulate the question to something like…”what can we do to help someone who is no longer living on this particular physical plane, or no longer possesses a physical body, then we are approaching a more accurate picture of reality.””

In the next several posts on this website we will be examining this question. I invite  your participation. We will look at: the stages of death, at what point can we say that someone is actually “dead,”  some scenarios imagined and resultant belief systems of different philosophies and religions surrounding this time. We might touch on physics, electrical fields, astral and causal bodies, and various during-life practices that may or may not affect one’s passage.

Below is a short mention of some Christian practices that will give us a nice start in examining this subject, the hours and days around the time of death.

Wikipedia tells us that: Among Church writers Tertullian († 230) is the first to mention prayers for the dead, not as a concession to natural sentiment, but as a duty: The widow who does not pray for her dead husband has as good as divorced him. This passage occurs in one of his later Montanist writings, dating from the beginning of the 3rd century. Subsequent writers similarly make incidental mention of the practice as prevalent, but not as unlawful or even disputed (until Arius challenged it towards the end of the 4th century). The most famous instance is Saint Augustine‘s prayer for his mother, Monica, at the end of the 9th book of his Confessions, written around 398.

And then we have the famous Ars Moriendi, the Art of Dying.

In the Christian world of medieval Europe, the Ars Moriendi, or “Art of Dying,” became hugely popular  around the time of the plague when death was rampant (14th and 15th centuries). The clergy had long used certain texts for their deathbed practices. When it became apparent that they would no longer be able to personally attend to the vast numbers of dying, their texts, their training manuals, were publicly issued. Soon they were widely used. These small texts generally consisted of a series of woodblock prints with instructions to be read by a family member or friend to the dying. The death bed was commonly believed to be surrounded by angels and demons. The instructions were clear – don’t avoid death, face it unafraid, defeat the evils of temptation which will certainly assail you, follow the way of Christ, and experience a good death.

The ars moriendi texts were widely read and produced by common people, for common people. Scholars have generally agreed that there are two ‘archetypal’ manuscripts from which the hundreds of variants that comprise the ars moriendi tradition in England are said to derive. The first of the two is a six-chapter work that explores the notion of an ‘artful death’ in great detail, whereas the second of the two is a briefer work that adapts and illustrates the longer treatise’s second chapter…this text nonetheless demonstrates the key point of the short version—namely, that maintaining stability in one’s faith in salvation in the face of death is the most important step to attaining salvation.http://soundideas.pugetsound.edu/cgi/viewcontent.cgi?article=1002&context=book_collecting_essays ) p.20

The Ars Moriendi teachings became incorporated into the modern Christian Liturgy. For example, the very popular 1855 English translation, Daily Hand-Book for Days of Rejoicing and of Sorrow drew directly from the Ars Moriendi Tradition.

The book contains four major sections: prayers and hymns for the healthy, the afflicted, the sick, and the dying. As the fourth section seeks “a calm, gentle, rational and blissful end,” it adapts core themes from the Ars Moriendi tradition: the dying must consider God’s judgment, forgive others and seek forgiveness, take leave of family and friends, commend themselves to God, and “resolve to die in Jesus Christ.” While demons no longer appear at the deathbed, the temptation to despair remains as the dying person’s sins present themselves to “frighten, condemn, and accuse.” The familiar remedy of contrition and forgiveness through Christ’s passion comforts the dying. Starck offers a rich compendium of “verses, texts and prayers” for bystanders to use in comforting the dying, and for the dying themselves. A confident, even joyful, approach to death dominates these prayers, as the dying person prays, “Lord Jesus, I die for thee, I live for thee, dead and living I am thine. Who dies thus, dies well.” (http://www.deathreference.com/A-Bi/Ars-Moriendi.html)

Posted in books of the dead, care giving, care giving, care giving, death and dying, death and dying, end of life, end of life care, hospice, hospice, hospice care, Labyrinth Readers Society, prayers for the dying, spiritual care, tibetan buddhism | Comments Off on Why do readings for someone who is dead or dying? An examination of the time and timelessness that characterizes physical death.

What’s a Death Midwife? Inside the Alternative Death Care Movement by Jennifer Luxton

Excellent,  informative article – required reading!

What’s a Death Midwife? Inside the Alternative Death Care Movement by Jennifer Luxton — YES! Magazine.

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Bhutan’s dark secret to happiness

Bhutanese Monastery

(Credit: Prakash Mathema/AFP/Getty)

This is a wonderful  article with, surprisingly, quite a bit of material to contemplate. Why are we so out of touch with death in the west? Well, for a start, because we don’t take a moment to ever even think about it. Death is sequestered in the west. And once it comes out into the open (as in Bhutan) it is healthier, there is less fear, more joy, and even more possibilities in “dealing” with loss and death:

“Ritual provides a container for grief, and in Bhutan that container is large and communal. After someone dies, there’s a 49-day mourning period that involves elaborate, carefully orchestrated rituals. “It is better than any antidepressant,” Tshewang Dendup, a Bhutanese actor, told me. The Bhutanese might appear detached during this time. They are not. They are grieving through ritual.”

This is the Buddhist 49 day reading cycle that we allude to (and follow) with our reading practice in the Labyrinth Readers Society. We also have a facebook forum so you can follow what we are doing on a daily basis.

 

 

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