Practical Preparations for Death
It is one of the most beautiful compensations in life
that no man can sincerely try to help another without helping himself.
—ralph waldo emerson
In previous chapters, we’ve discussed and explored various dimensions of the dying process. You’ve investigated your own experience and understanding of your beliefs about death and a number of speculations of what happens internally as well as physically as you move through the dying process and then what experience you may have after your breath and heart stop. All of this has been about you and what happens as you die and the potential of your journey after dying. In this chapter, I want to turn your attention to how you would want to be cared for as you go through your dying process.
The first question is, what kind of caregivers do you want and how do you want them to care for you at the various stages of your dying? While living, you can prepare your choice of caregivers and help them to understand the process of active dying. Also, if your dying process extends for long periods of time it adds stress and tension to your caregivers. There are some suggestions in this section as to how your caregivers can work with this situation. One critical area we will explore in this chapter is how you want caregivers to prepare your body after dying. Also, one thing you can plan for now is what kind of recognition, memorial, or funeral service you would like to have for family and friends. And, finally, at the end of the chapter, I want to raise the issue of physician-assisted suicide that is gaining legality in the United States.
Preparation for Caregivers
Depending on your physical condition at the end of your life, you will possibly have among your “caregivers” family, friends, doctors, nurses, and hospice workers. For the process of your dying, you have the possibility now of choosing who you would like to have as caregivers when you enter your dying process. You will want to consider their caring relationship to you, their ability, and how they might care for you, and discuss with them how they feel about caring for you.
Sometimes it is not possible for you to choose your caregivers, but you can express to family and close friends what quality of care you want at this most significant experience of your life. Just as adequate care is important for you in your dying process, it is also helpful to find a working structure that provides support for your caregivers. Below are some considerations of who you would want as caregivers for you.
Who Do You Want as Caregivers?
Choose caregivers who will love and nourish you and who will create an environment that will establish for you a peaceful state of mind as you go through the process of your death.
Professional caregivers can help you, but they can also hinder you with pushy behavior and attitudes about how you are to be treated. Many of your caregivers (family, friends, professionals) may exhibit a negative mind state and create undue tension at your dying. Your caregivers need to match you as you move into a peaceful, loving, and opening state of your being in the last moments of your life. Be willing to say no to caregivers, instruct them on how you want to be treated and on the environment you want them to establish, and be willing to ask individuals to leave if you do not feel comfortable with them. It is very important to have a key caregiver who you trust absolutely to fulfill and manage your desires for the kind of care, environment, and people you want with you as you die.
Take the view now before the ending time of your life to create the perspective that it is a privilege for caregivers to be with you in this once-in-a-lifetime passage. You are the one to take the lead in your own death process. Others may think there is a particular way to do things, but it is your process, not theirs. You are the guide; only let them guide you based on what you want them to do for you.
Determining the Care You Want
Here are some ideas of how you can guide your own process. Be sure to write in your notebook the kind of care you want from these and other ideas you may have about your caregivers and the environment. If you are in a group, both share and listen to others about what each of you wants in the dying process. It may give you further ideas for your process.
• Let both family and professional caregivers know you would like to have encouragement and comforting about not being afraid as you die and also to support you by creating a feeling of a safe environment where you are dying. For example, the room you are in can be sunny, shaded, filled with flowers, with music playing, quiet whispering, and perhaps only one or two people at a time with you.
• Your hearing is one of the last senses to dissolve, so let your caregivers know if they are talking too much or too loud. Your caregivers must be willing to hold a peaceful and quiet attitude when they are in the room with you and have an understanding of what you will be going through in the stages. Heartfelt listening to your needs, rhythm, and changing dynamics as you go through the various stages of dying is an ability that caregivers must have.
• Touching is also one of the last senses to dissolve, so being held or holding your hands gently may bring vital reassurance to you.
• Having caregivers breathing with each of your breaths is another connection that could be precious to you.
• The key understanding to communicate to your caregivers is to make sure throughout the dying process that their role is to enable you to relax and let go as you depart in a positive state of mind filled with the awareness of love.
• Your caregivers need to make you as comfortable as possible because you will go through several different states of response to your dying.
• Your dying is a delicate dance for both you and your caregivers. It is of great importance that you be able to give your full attention to your dying process as you move toward full awareness of your expanded self.
• Share your life story when you are able with your caregivers. This helps you release the past and be in gratitude for all aspects of your life. Let your caregivers help you through any forgiveness process that may arise from memories of people or situations.
• Have your caregivers help you remember your best human qualities, allowing you to feel uplifted as you recall memories of loving times in your life.
• One simple step that can help prepare caregivers for your ensuing death is to initiate a conversation with them about how you would like your body cared for after death. This can initiate an intimate conversation with family and friends about their own feelings about your dying and what they want at their own dying process. This is a wonderful place to explore what might be possible both for you and them.
• Intimate conversations with family and friends about their life with you can also be a time of remembrance for you. Memories can be of times when you had compassion for yourself and others, times when you had courage, times when you opened your heart to others, times of fun and adventure, and more.
• Finally, make available to your caregivers the journal or notebook that you used for the exercises in this book, including the list of readings you selected and any other material you want your caregivers to have, so they have a full understanding of what you want from them as they care for you on this final journey of your life.
Exercise: How Do You Want to Be Treated in Your Dying Process?
Place a yes or no beside each statement. Make appropriate comments in your notebook as to why you give each statement the yes or no. If in a group, share with the group your thoughts.
• I want to have my caregivers with me continually as death may come at any moment for me.
• I would like my hand held and be talked to by caregivers even if I do not respond.
• I want others praying or meditating in the room for me as much as possible.
• I wish to have friends told that I am sick and dying and to pray for me.
• I want kindness and joy, not sadness or crying, near my bed.
• I want quiet music and whispering when I am dying.
• I want one person from my family or a friend guiding other family members, friends, and professionals at my dying process.
• I want family and friends to sit with me, talk to me, and tell stories about our life together.
• I want my clothes to be cleaned if my bowels and bladder fail.
• I would like to die at home.
• I want family around me when I die. Who else besides family?
• I would like professional caregivers to keep my life going as long as possible.
• I want appropriate drugs to reduce my pain.
• I want drugs to remove me from being conscious of my dying.
• I don’t believe there is anything beyond death, so I want to stay conscious of my surroundings as long as possible.
Information for Caregivers About the Signs and Symptoms of Active Dying
Whether a caregiver is a professional or a family member, they need to know the signals of how you are changing outwardly and physically with the dying process and what is appropriate to do to assist your dying. The many physical and practical signs and symptoms can be observed and need specific responses from a caregiver.
Caregivers will notice that, as you are dying, you digest each dying phase you go through before you enter the next stage in the physical dying process. Depending on the physical issues you face, each phase with its particular signs will be shorter or longer in duration.
The best support that a caregiver can give to you is to create a positive way for you to go through each dying phase without too much trauma or discomfort. Here are a variety of signs and symptoms for the caregiver to pay attention to as the dying process progresses. Any of these signs and symptoms can come in any order for a particular person. It is helpful to have your caregivers know what these signs are. Have your caregivers:
• Notice when you do not talk much as you begin to turn inward due to feeling the pull of images, voices, etc., that you may be experiencing. They need to watch your breathing, listen to you if you make comments as they sit with you, but generally not engage in conversation with you.
• Notice when your body gets hot. At times there is an increase in heat in the head and the heart area. They need to gently wipe your brow to keep you cool. They need to wet your dry lips periodically with a wet sponge.
• Notice when you have a decrease in food and water intake. They are not to force food or water on you, as you are letting go of physical needs as you turn inward for “spiritual food.”
• Notice as you become weak and sleep a lot due to apoptosis, which is the process of programmed cell death.
• Know that your request is that caregivers be quiet and gentle at this point and create an atmosphere of meditative peace. Have the focus be on soft music, whispering, and only gentle physical movement if you need attention.
• Notice when you become unable to move or urinate and when your breathing pattern changes due to less oxygen and to metabolic changes as your body shuts down.
• Understand that any assistance with bodily needs should be done with gentleness of movement. You are in a highly sensitive condition in your dying at this point.
• Notice any restless movement. This movement can range from gentle to extreme agitation with tossing and turning, kicking off blankets, attempts to get up out of bed, etc. This restlessness is due to decreased circulation in your brain and blood acidity, which creates erratic responses in you.
• Help to reduce the agitation with a calm, soft, and reassuring voice. Placing a hand under your hand, doing energy work like Reiki if they know how, repeating verbal prayers softly, playing theta brain-wave music, etc., will be reassuring to you. The purpose is to create a calm, peaceful environment for you as much as possible.
• Know that what caregivers do at this point is not the most critical, but their state of presence that will be reassuring to you.
• Notice when you become physically and emotionally disorientated. One moment you may seem lucid and present, and the next disjointed in speech and you cannot recognize people and the situation happening to you. This is due to integrating into a new structure of time and place, and the falling away of your identity. The caregiver’s role is to be gentle and reassuring, with a calming voice and comforting manner toward you. Soft and gentle touching is reassuring to you.
• Notice that your skin is becoming transparent. This is a sign that you are progressing toward physical death.
• Breathe with you. Caregivers may increase a presence of love and a meditative atmosphere with a gentle focus on the breathing and movement of you. This puts the caregiver into rhythm with you as you are dying and helps them attune more emotionally and spiritually to you.
• Notice when your breathing pattern changes. The breath can become fast, slow, shallow, strong, or struggling. This is due to changing brain patterns as the chemical structure changes in the brain and is part of the dying of your brain. Given your medical instructions forcing oxygen on you or trying to apply more drugs, etc., may not serve you at this stage of dying. The change of breathing patterns is a natural phase of your dying process.
• Notice when your legs and arms become discolored due to circulation slowing down. Caregivers need to be careful not to attempt to rub or put ice or heat on the arms or legs. Once again, this is the natural progression of your dying process.
• Notice when there is a rattling of your breathing and when the breath stops. The brain is still functioning, so you are not technically dead yet.
• Know that you have materials you would like read to you after the breathing stops. A significant challenge for caregivers is to continue to sit with you after you have died both reading or speaking to you as I’ve suggested above. It is important to be prepared at this stage to have material written out that you want caregivers to read and speak aloud to you. If possible, caregivers remain in a meditative and intuitive space on behalf of you as the “dead” person for several hours.
What Caregivers Can Do When Dying Drags On
Reverend Jerry Farrell, of the church Unity of the Gold Country Spiritual Center in California, is a former Catholic priest and former spiritual director of Hospice of the Foothills for Nevada County, California. He provides some insightful observations for caregivers from his years of being with the dying.
• One of the important things Reverend Farrell urges caregivers to watch for is fear arising in the dying person. What is needed, he suggests, is to speak softly in the ear of the dying person and tell them that they are loved and forgiven and should simply relax and let go.
• He also notes that if the dying process is dragging on for many, many days, be patient. Even if you can’t figure out what or why things are happening, know there is important work taking place in the dying person. Everyone has their own internal timing and rhythm.
• When the person is peaceful and all the physical signs of dying are present, but dying is prolonged, it may be the family’s refusal to let the person go. Over the years, observing how families resist letting go of the dying person, he developed the following “release formula” for family members or friends to say to the dying person.
• Release Formula: The family or friends either singularly or together talk softly and gently saying the suggestive release statements to the dying person. Not all the statements need to be said, but those giving the dying person permission to let go and that friends and family will be okay when they die should be emphasized. These statements can be said in a person’s own words to the dying person:
* Know you have led a complete life and are dearly loved.
* Know that we love you and want you to be in peace.
* We know that the time has come for you to choose what is best for you.
* None of us are angry with you and we release you from our care and concern. Know that you have our love and permission to go.
* Know that there is no more that we can do for you.
* We know that your pain and suffering will soon be relieved.
* We love you and hope to see you in the next life.
* We will do fine. We will be okay after you leave us.
Exercise: What Do You Want from Your Caregivers?
Describe the things that you want your caregivers to do to keep you comfortable. Use this list as a starting point. In your journal, modify and explain in detail what you specifically want or don’t want from your caregivers. Add to this list as things come to mind. This is a list to give to caregivers. If in a group, share your lists with each other for further ideas.
• I do not want to be in pain. Give me appropriate drugs but don’t make me unconscious of what I need to experience in the dying process.
• If I have signs of depression, nausea, or hallucinations, do what you can to help me.
• If I have a fever, then place a cool moist cloth on my head. I want my lips and mouth kept moist to stop dryness.
• I want to be kept clean with warm baths as long as I am able.
• I want to be massaged with warm oils as often as possible.
• I want to have my favorite music continually played until I die.
• I want to have personal care like shaving, nails clipped, hair brushed, teeth brushed as long as it does not cause discomfort.
• I want to have religious readings and poems read aloud to me when I am close to death.
• I want friends beyond my family to meditate and pray for me.
• I want to have the option for hospice palliative care for physical comfort.
• I am willing to have them overdose me to speed my dying.
• Indicate other things you may want caregivers to do for you at your death.
Preparation of the Body After Death
Various death traditions tell us not to disturb the dead body for at least three days. This means not taken to a mortuary or cremated, but generally remaining where the person died. These three days are important for the dead person in the after-death experience. When we died at home and were celebrated and then buried, it was usually three days before the burial service. In Irish tradition, for example, the body was dressed up and often sat up while a party of music, singing, dancing, and toasting the dead person took place. In most Eastern religious traditions, the body is prepared with oils and dressed, and then candles and flowers are put around the dead person to honor them.
These three days are important for the family and friends to emotionally and spiritually integrate the loss of the dead person, as well as prepare for some community ritual of recognition of the dead person. It is also the time of the continual reading of the after-death “reminder” to the dead person that they are dead and to move toward the light. These three days are an important time of inner and outer preparation for both the caregivers and the dead person.
If caregivers had open, compassionate hearts toward the dying person, the grief process has already begun for them and continues in deep awareness through these three days of caring for the body. Often it is not possible to wait for the three days, given preferences of the deceased or other circumstances such as shipping the body across country. Again, the intent by caregivers is to continue to honor and provide prayers, affirmations, or readings that affirm the person’s passage whether in the three-day period or not.
Immediate Care of the Body at Death
There are many traditions about preparing the body by washing it, rubbing the body with oils, dressing the person, and having people come and meditate and pray for the deceased person. After the first hour, including the period of twenty minutes during which the dead person is facing the possibility of moving into the light, caregivers will observe continuing changes in the body. There will be a stiffening of the body after about three hours that will continue to maximum rigor mortis up to twelve hours. The heart will progressively grow colder. The body will appear tight and tense. Caregivers need to shut the eyelids after the twenty-minute period of not touching the body, as rigor mortis affects the eyes and face first.
After about twelve hours, the maximum state of stiffness will begin to loosen due to chemical and tissue decay. This process occurs gradually over three days. The rigor mortis reverses, starting with fingers and toes, up through the body to the face, resulting in the appearance of deep relaxation in the face and body.
One issue that confronts caregivers is keeping the body for three days, if those were the wishes of the deceased. Particular circumstances may cause difficulty for the caregivers to keep the body for three days. Intent is always the important issue. What matters the most is that the caregivers are doing their best and expressing their love.
If you, as the dying person, choose this three-day waiting period with the body, I will present in the legal chapter how this needs to be taken care of before your death. If, for example, your death is in a hospital, there must be arrangements in advance to keep your body for a longer time or to move the body to a home. These issues, plus disposing of the body via cremation, burial, or willing to science, are considered in the next chapter.
Traditional Three-Day Preparation of the Body
When preparation has been granted for keeping the body for three days, the next stage of the death process begins for the caregivers. It is after the body has relaxed that the washing, oiling, and other preparations to the body can take place. There are also the rituals around the body that may be instituted. This can include candles, music, and people who continuously sit with the body, meditating, praying, and reading to the dead person in their journey beyond death.
Hopefully, you, as the dying person, will have detailed what rituals you want at this point. Most of all, these three days can be a time of sacred, quiet reflection, prayer, and focus on the person who has died. If it can be arranged to have people sitting quietly, meditating, praying, and reading to the deceased around the clock during the three days, that is optimal. Beyond the three days is then the planning and carrying out of the memorial, announcements in newspapers, death certificates, and other legal issues that need to be taken care of by family members (more on this in the legal chapter). Resources on preparing the body during the three-day period and gravesite preparation can be found in Appendix A.
Exercise: Grief Affirmation Phrases for Caregivers
The affirmations below can be helpful to your caregivers when you die. Provide these affirmations to your caregivers so that it may help give them a sense of calm to support their grief when you die. Provide these in your notes to caregivers if it is appropriate for you.
• I accept my grief and forgive anything that did not meet my loved one’s needs.
• I open to and release all sorrow and pain for my loved one.
• I accept my sadness knowing I am not my sadness.
• I will find my inner resources to be present for my sorrow.
Recognition of You After Your Death
After you die, family and friends want to honor your life. What kind of service or memorial do you want? Perhaps you don’t want any public recognition. Do you want an obituary in a newspaper, an announcement on Facebook, or nothing at all? Do you want an open casket for viewing? Do you want just family at a gravesite? Do you want a memorial open to anyone who wants to come? Who do you want to arrange your after-death recognition? You have a right to resolve all these and many other questions before you die. There is also a host of legal issues that come after death that we will consider, but the question at this stage is: What recognition if any do you want after you die?
Exercise: What Do You Want During and After Your Death?
In your journal, respond to the following questions. These questions can help in planning both your dying process and your after-death experience the way you want it. If you like, you can create your entire memorial service should you choose to have one. You can write your own obituary. Plan what music you want played as you die and at your service. Be creative and aware of what this planning does for you in anticipation of your death.
• List who you want as your caregivers. Who do you not want to be present as you die?
• Are there particular people you want to come to you to resolve issues with you before or during the dying process?
• Who is the person that you want to manage the caregivers and the process of your dying?
• When you are dead, do you want your body to be buried in the ground or at sea, cremated, or given to science for research or your organs donated?
• What kind of ceremony or memorial would you like after you die? Do you want a standard funeral-home service or something you design, or no memorial at all?
• Who do you want to attend your service or memorial if you have one?
• If you have a service or memorial, what kind of structure, minister, leader, music, speakers, ceremony, food, or celebration do you want?
• Do you want your death published in the newspaper?
• List any other things you want attended to after you die.
A Word About Physician-Assisted Suicide
Laws are being passed in various parts of the United States to permit individuals to take their own lives through the legality of physician-assisted suicide. This “death with dignity” movement raises a number of issues and options for a person’s dying process. In the assisted-suicide process, a medical doctor provides the knowledge and means for the person to commit suicide. The important thing to note is the doctor is not present at the time of death. Most of the laws governing physician-assisted suicide require that the individual has a physical condition from which he or she will die within six months. Euthanasia is similar. With euthanasia, however, a medical doctor is present and provides and administers a lethal drug to the patient. Euthanasia is legal in the Netherlands.
There are pros and cons about assisted suicide based on beliefs, suffering, and long-term pain and terminal illness. With the physician-assisted suicide movement growing in the United States, it is raising moral, ethical, and religious questions regarding suicide within the discussion of end-of-life issues. Each person’s physical condition and beliefs will determine one’s choice on this end-of-life issue. It is helpful to become informed about this topic as you consider your own end-of-life options.