Knowing what to expect during the dying process

By Terre Mirsch 

Last week we talked about how to be with the dying and the discomfort that we sometimes feel when we shift our focus from one of “doing for” to one of “being with.” Lack of understanding regarding what to expect during the dying process often leads to fear and anxiety—both of which may get in the way of our ability to be fully present with our loved one. While death can occur suddenly, those with progressive illness typically experience the dying process as a series of predictable changes that occur gradually over time, as the body slowly begins to shut down. Early changes may be so discreet that they are often missed by family or even medical professionals.

Although each death is unique to the individual experiencing it, and these changes may occur at different times and at different rates, there are certain commonalities. The following can serve as a guide to help you anticipate and recognize the changes that may occur as death nears:

Weakness and Fatigue

In the months and weeks before death, weakness and fatigue increase and your loved one will have limited energy. Your loved one may begin to spend more time in bed and may need more assistance with personal care, such as bathing, toileting, and with walking.

Appetite Changes

As illness progresses and the body no longer uses a lot of energy and the digestive system begins to slow down. Your loved ones need for and interest in food and fluids begins to decrease.

Withdrawal

In the advanced stages of an illness, people often begin to lose interest in activities. Your loved one may also lose interest in spending time with other people and may become quiet and reserved. This does not mean that they do not care about or love their family or friends. Withdrawal is a natural part of the process of “letting go.”

Sleep

Sleep patterns may change and your loved one may sleep most of the day, and be more awake at night. Or you may find that they sleep for most of the day and night, with only short periods of wakefulness. Over time your loved one may not respond to you and you may not be able to arouse them.

Nearing Death Awareness

People sometimes have periods of confusion or waking dreams as they approach end of life. They may report seeing or speaking with loved ones who have died. Or they may talk in metaphors such as “going on a trip,” “getting on a train,” “going home,” “seeing lights,” or of butterflies or other symbols that we cannot see. This is common and can be comforting to the dying person.

Changes in Elimination

As your loved one becomes weaker and less alert, he or she may begin to lose control over their bladder and bowels. During the final stages of the dying process, you may notice a decrease in urination, and the urine may become dark with a strong odor.

Circulatory changes

Some parts of the body may begin to feel cool to touch as the blood circulation begins to slow down. Fingers, hands, toes, feet, lower legs, mouth, nose, or ears may begin to change to a bluish purple color that looks marbled in appearance as blood flow slows to the far parts of the body.

Body Temperature

Sometimes the body loses the ability to regulate and maintain temperature and fever develops. This fever does not necessarily indicate an infection.

Breathing Changes

Breathing patterns usually change as the body continues to shut down. There may be times when there are long pauses, sometimes for a minute or two, between breaths. There may be other times when the breathing is more rapid, shallow, and mechanical in nature.

Congestion

Secretions or mucous may develop in the back of the throat or in the lungs that can make the breathing sound very noisy. Your loved one is likely unaware of these changes and this does not mean that they are struggling to breathe.

The Last Breath

As your loved one draws a last breath, you may hear and see the following:

• Quiet shallow breathing that slows to a stop.
• An audible exhalation as the final breath is released.
• A few additional breaths as the lungs empty air after death.
• Eyes opening wide and then remaining partially open.
• The lower jaw muscles may relax and the jaw may fall open.
• Body fluids, including urine and bowel, may be released from the relaxed body. 

Death comes in its own time. Some people may go through these stages over the course of minutes or hours. For others, the changes will occur over a period of days, weeks or months. Others may not experience any of these changes. Understanding what to expect can help you to prepare, while feeling very confident in knowing how you can care for and comfort your loved one during the dying process.