A Guide to Understanding the Process.

We created these guidelines to help caregivers better understand the physical signs associated with the process of the body shutting down as well as the emotional and spiritual changes taking place.

The following describes the physical symptoms you may observe:

Physical Changes and Helpful Tips:

1. Coolness. Hands, arms, feet, and legs may be increasingly cool to the touch. The color of the skin may change and become mottled. How you can help:  Keep the person warm with comfortable, soft blankets.

2. Sleeping. An increasing amount of time may be spent sleeping. The person may become uncommunicative, unresponsive, and difficult to arouse. How you can help: Sit quietly with them. Speak in a normal voice. Hold their hand. Assume they can hear everything you say. They probably can.

3. Confusion. They may not know time or place and may not be able to identify people around them. How you can help: Identify yourself by name before you speak. Speak normally, clearly, and truthfully. Explain things such as, “It’s time to take your medicine now.” Explain the reason for things, such as, “So you won’t start to hurt.”   

4. Incontinence. They may lose control of urinary/bowel functions. How you can help: Keep your loved one clean and comfortable. Ask your hospice nurse for advice.

5. Restlessness. The person may make repetitive motions such as pulling at the bed linen or clothing.  This is due in part to decrease in oxygen. How you can help: Do not interfere with these movements or try to restrain them. Speak in a quiet, natural way. Lightly massage their forehead. Read to them. Play soothing music.

6. Fluid and food decrease. Your loved one may want little or no food or fluid. The body will naturally conserve energy required for the task ahead. Food is no longer needed. How you can help: Do not force them to eat or drink if they don’t want to. It only makes them more uncomfortable. Small chips of ice or frozen juice chips might be refreshing. A cool, moist cloth on their forehead might help.

7. Congestion. There may be gurgling sounds inside the chest. These may be loud. This sound does not indicate the onset of severe pain. How you can help: Gently turn their head to the side to drain secretions. Gently wipe their mouth with a moist cloth.

8. Urine decrease. Output may decrease and become tea colored. How you can help: Consult your hospice nurse.

9. Change in breathing. The person may take shallow breaths with periods of no breathing for a few seconds to a minute. They may experience periods of rapid, shallow panting. These patterns are common and indicate decrease in circulation. How you can help: Elevating their head or turning them on their side may bring comfort. Hold their hand. Speak gently.

10. Fever. Increase in temperature is common. How you can help: Consult your hospice nurse. A cool, moist cloth on their forehead may bring comfort.

As the physical changes occur your loved one is completing important work on another level. Emotional and spiritual changes may be manifested. The next section describes the appearance of these tasks.

Emotional and Spiritual Signs

1. Giving away belongings and making funeral plans. Some people want to maintain control over their life, so they want to participate in making final decisions about their belongings or their person. How you can help:  Although it is emotionally hard for families to talk about final arrangements, it is important to let your loved one do this if they want. Everyone, especially the dying, appreciate having their choices honored.

2. Withdrawal. The person may seem unresponsive, withdrawn, in a comatose-like state. They are detaching. This is a letting go of earthly things and earthly relationships. How you can help:  Know that hearing remains. Speak in a normal voice. Identify yourself. Hold their hand. Say what you need to say. This helps them let go.

3. Vision-like experiences. The person may say they have spoken to people who are already deceased. They may say they have been places or seen things not visible to you. This is not hallucination or a drug reaction. It is common. How you can help:  Do not
contradict, explain away, or discount this experience. Affirm them. If the experience seems to frighten your loved one, reassure them it is common and that they are normal: “Yes, these things happen.”

4. Restlessness. Repetitive and restless tasks may indicate something unsolved or unfinished is preventing them from letting go. How you can help:  Talk with your hospice chaplain. Help the person recall a favorite place or good experience. Read to them. Play soothing music. Give reassurance that it is okay to let go.

5. Unusual communication with or withdrawing from others. Your loved one may make statements or requests that seem out of character. They may be testing you to see if you are ready to let go. They may want to be with only a few select people. Maybe they only want one person. If you are not included, it does not mean you are not important or not loved. It means your task with the person is fulfilled. If you are selected, it may mean the person needs your affirmation, support, and permission to let go. How you can help:  Let your loved one know you will be alright. Say whatever words of love and support you need to say. Give them permission.

6. They say goodbye. This is their final gift. How you can help:  Listen. Hold them. Say whatever you need to say. It may be just, “I love you,” or recounting favorite memories you have shared. It may be an apology, or saying, “Thank you.” There is no need to hide your tears. Tears express your love and help you let go.

Remember, all these signs and symptoms are common. Your loved one may be as unique during this time as they have always been, so they may show some of these signs and not others. Or they may be different altogether. These signs and symptoms are just guides to help you understand what is common. With this in mind, the following summary might be helpful:

Summary Time-line:

One to Three Months
• Decreased desire for food
• Increased desire for sleep
• Withdrawal from people and the environment

One to Two Weeks
    • Even more sleep
    • Confusion
    • Restlessness
    • Vision-like experiences
    • Change in temperature, respiration, pulse, and blood pressure
    • Congestion
    • Not eating

Days or Hours
    • Surge of energy
    • Decreased blood pressure
    • Glassy, teary eyes
    • Half-opened eyes
    • Irregular breathing
    • Increased restlessness
    • Cold, purple, blotchy feet and hands
    • Weak pulse
    • Decreased urine output

Minutes
    • Gasping breathing
    • No awakening

How you will know death has occurred?
Dying may take hours or days. No one can predict the time of death, even if the person is exhibiting the signs and symptoms. This can sometimes cause fatigue and confusion; and although you may be prepared for the dying process, you may not be prepared for the actual death moment. It may be helpful for you and your family to discuss just what you would do at that moment.