CARE RESOURCES

Preparing for the Final Days

Just us each person's life is unique, so is his or her death. Because of this it is difficult to give hard facts about when the actual death will occur and what the actual death of the patient will be like when it happens. Therefore, some common concerns and approaches will be shared in this section.

PREPARING when a person enters the final stages of the dying process, two different dynamics are at work, which are closely interrelated and interdependent. On the physical plane, the body begins the final process of shutting down which will end when all physical systems cease to function. Usually this is an orderly and non-dramatic progressive series of physical changes which are not medical emergencies requiring invasive interventions. These changes are a normal, natural way in which the body prepares itself to stop. The most appropriate kinds of responses to these changes are comfort-enhancing measures.

The other dynamics of the dying process are at work on the emotional-spiritual-mental plane and it is a different kind of process. The spirit of the dying person begins the final process of release from the body, the immediate environment and all attachments. This release also tends to follow its own priorities, which include the resolution of whatever is unfinished of a practical nature. Reconciliation of close relationships and receiving permission to let go from family members are some of the events that take place at this point. These events are the normal natural way in which the spirit prepares to move from this material realm of existence into the next dimension of life. The most appropriate kinds of responses to these changes are those which support and encourage the release and transition.

When a person's body is ready and wanting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, he or she will tend to linger even though very uncomfortable or debilitated in order to finish whatever needs to be finished. On the other hand, when a person is emotionally and spiritually resolved and ready for this release, but his or her body had not completed its' final physical process, the person will continue to live until the physical process is complete and ready to shut down.

The experience we call death occurs when the body completes the natural process of shutting down and the spirit completes the natural process of reconciling and finishing. These two processes need to happen in a way appropriate for the values, beliefs and life style of the dying person so that death can occur as a peaceful release. Therefore, as you seek to prepare yourself as this event approaches, the members of your hospice care team want you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding and ease. This is the great gift of love you have to offer your loved one as this moment approaches.

The physical, emotional, and spiritual signs and symptoms of impending death which follow are offered to you to help you understand the natural kinds of things which may follow are offered to help you understand the natural kinds of things which may happen and how you can respond appropriately. Not all these signs and symptoms will occur with every person, nor will they occur in this particular sequence. Each person is unique, and what has been most characteristic of the way your loved one has lived consistently will affect the way this final shut down and release occurs. This is not the time to try to change your loved one, but the time to give full acceptance, support and comfort

COMMON PHYSICAL SIGNS AND SYMPTOMS Of THE
DYING PROCESS WITH APPROPRIATE RESPONSES

Coolness. The patient's hands, arms, feet and legs may become increasingly cool to the touch and at the same time the color of the skin may change. This is a normal indication that the circulation of blood is decreasing to the body's extremities and being reserved for the most vital organs. Keep the patient warm with a blanket, but do not use an electric one.
Sleeping. The patient may spend an increasing amount of time sleeping, and appear to be uncommunicative and unresponsive. This normal change is due in part to changes in the metabolism of the body. Sit with your loved one and hold their hand. Do not shake or speak loudly, but speak softly and naturally. Do not talk about the patient in patient's presence. Speak to them directly as you normally would, even though there may be no response.
Disorientation. The patient may seem to be confused about the time, place and identity of people surrounding them. This is also due in part to the metabolism changes. Identify yourself by name before you speak rather than to ask the patient to guess who you are. Speak softly, clearly, and truthfully when you need to communicate something important. An example would be "It is time to take your medication", and explain the reason for such communication, such as, "So you won't begin to hurt".
Incontinence. The patient may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your hospice nurse what can be done to protect the bed and keep your loved one clean and comfortable.
Congestion. The patient may have sounds coming from their chest as though marbles are rolling around inside. This normal change is due to the decrease of fluid intake and the inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the patient's head to the side and allow gravity to drain the secretions. You may also gently wipe the patient's mouth with a moist cloth. The sound of the congestion does not indicate the beginning of severe or new pain.
Restlessness. The patient may make restless and repetitive motions. This often happens and is due in part to the decrease in oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. To have a calming effect, speak in a quiet, natural way, lightly massage the patient's forehead, read to the patient, or play some soothing music.
Fluid and food decrease. The patient may begin to want little or no food or fluid. This means the body is conserving for other functions the energy, which would be expended in processing these items. Do not try to force food or drink into the patient or try to use guilt to manipulate them into eating or drinking something. To do this only makes the patient much more uncomfortable. Small chips of ice, frozen Gatorade, or juice may be refreshing in the mouth. Glycerin swabs may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort.
Urine decrease. The patient's urine output normally decreases due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with your hospice nurse to determine whether there may be a need to insert or irrigate a catheter.
Breathing pattern changes. The patient's regular characteristic breathing pattern may change with the onset of a different breathing pace which alternates with periods of no breathing. This is called the "Cheyne-Stokes' symptom is very common and indicates a decrease in circulation in the internal organs. Elevating the patient's head may help bring comfort. Hold the patient's hand and speak gently.

COMMON EMOTIONAL, SPIRITUAL AND MENTAL
SIGNS AND SYMPTOMS OF THE DYING PROCESS,
WITH APPROPRIATE RESPONSES

Withdrawal

The person may seem unresponsive, withdrawn or in a comatose-like state. This indicates preparation for beginning the process of letting go. Since hearing can remain with the patient all the way to the end, speak to your loved one in a normal tone of voice. Identify yourself by name when you speak, hold their hand, and say whatever you are able to say that could help the person let go.

Vision-Like Experiences

The person may speak or claim to have spoken to persons who have already died, or to see places not presently accessible or visible to you. This does not necessarily indicate a hallucination or a drug reaction. The patient is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Affirm their experiences. Do not contradict, explain away, belittle, or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean that it is not real to your loved one. These experiences are normal and common. If the experiences frightened your loved one, explain to them that they are normal.

Restlessness

The person may perform repetitive and restless tasks. This may, in part, indicate that something is still unresolved or unfinished that is disturbing to them and preventing them from letting go. Your hospice team member will assist you in identifying what may be happening and help you find ways to help the person release from tension or fear. Other things which may be helpful in calming the person are to recall a favorite experience, read something comforting, play music, and give realistic assurances to the patient, mainly that you are there for them. Medication may be helpful as well.

Fluid and Food Decreases

The patient may want little or no food. This may indicate that the person is ready for the completion of the process. You may help your loved one by giving permission to let go whenever they are ready. At the same time affirm their ongoing value to you and the good you have received from them that you will carry forward into your life.

Decreased Socialization

The person may only want to be with few people or even just one person. This is a sign of preparation for release. It does not mean you are unloved or unimportant. It may mean that you have already fulfilled your task and it is time to say good-bye. If you are present at this time, the person needs your affirmation, support and permission. Simply "keeping company" quietly can be very helpful as well.

Unusual Communication

The person may make a seemingly out of character statement, gesture, or request. This may indicate that they are ready to say good-bye and are testing you to see if you are ready to let them go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, cry and say whatever you need to say.

Giving Permission

Giving permission to your loved one to let go without making them feel guilty for leaving or trying to keep them with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give them your assurance that it is all right to let go whenever they are ready is one of the greatest gifts you have to give your loved one at this time.

Saying Goodbye

It is time to say goodbye, when the person is ready to die and you are able to let go. Saying goodbye is your final gift of love to your loved one because it achieves closure and makes the final release possible. It may be helpful to lie in bed with the patient and hold them, or take their hand and then say everything you need to say. It may be important so that later you won't feel that you should have said something to your loved one and held back. You may wish to recount your favorite memories, places and activities you shared. You may wish to say, "I love you", I'm sorry" or "I forgive you: for whatever difficulties there may have been in the relationship or "Thank you" for something. Tears are a normal and natural part of saying goodbye. Tears do not need to be hidden from your loved one nor apologies given. Tears express your love and help you to let go.

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