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The last few days: What to expect

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Many people have never experienced being present when a person dies. The movies certainly do not give us a realistic picture of what to expect. Of course, much of the process depends on what is causing the person to die. However, there are some generally common elements.

An overview: What to expect generally

One nurse explained the last week or two as a process of the body shutting down, one organ system at a time. She used the analogy of cleaning a house in preparation for moving. In such a case, we typically clean each room, one at a time, and then close the door when we are done. The body seems to do the same kind of thing in preparation for death.

For instance, the first organ system to "close down" is the digestive system. There is really no need to keep processing food and nutrients if the body is not going to continue much further into the future. The patient, therefore, will begin to lose interest in food and will eventually stop eating and lose the sensation of being thirsty. As a result, he or she will also stop having bowel movements, and what urine is produced will generally be minimal and rather dark in color. (This dehydration in preparation for death may actually help to reduce congestion in the lungs.) The loss of appetite and thirst is essentially the body shutting down the digestive system and "closing that door."

Conscious awareness is often the next system to close down. It takes a lot of energy to follow conversations, speak, and track what is going on around you. At some point, this will be too much, and the person who is dying will become less and less "present." This withdrawal may take the form of sleeping a lot, or fading in and out of a coma-like state. Or, it may take the form of disorientation. People who are dying may see things that the rest of us do not see. Frequently they speak to people who are not really there, and it's not unusual for them to speak the names of people from their past who have already died.

While the dying may fade in and out of awareness, they do appear to retain their sense of hearing and their sense of touch until very close to the end. Holding hands, gently massaging the feet, or wiping the brow are all things you can do to help comfort a person who is dying. As well, because the dying continue to hear and understand what is said, even if they seem to be asleep, it seems to be reassuring to speak words of love and affection. (Many family members have been surprised, and even embarrassed, to have a loved one respond to something that was said under the assumption that the dying person was asleep and not able to hear the conversation!)

As a general rule, it is the heart and lungs that "close down" last. This usually involves a process of slowing down and then fading away. In the last few days the lungs begin to fill with fluids such that breathing is accompanied by a wet, crackling kind of sound. This congestion can be minimized by withholding fluids and "allowing" the dying person to become dehydrated. Although alarming to hear, it is a normal part of the dying process and does not appear to reflect pain or discomfort for the patient. (If you are worried that the patient is distressed, you can ask your physician for medications to help reduce any respiratory congestion, or a suction machine you can use to clear the passage ways.)

In the last few hours or days, both the heartbeat and the breathing pattern can become irregular. The dying can have periods when their breathing is quick and shallow, followed by periods when their breathing is drawn out. Toward the end, a person can go as long as 10-60 seconds between breaths. This does not appear to be distressing for the patient, but it can be exhausting for those who are present in the room as they wait anxiously to see if the person is going to draw another breath.

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Being with a dying family member

People in the last few days often drift in and out of consciousness. You and the person who is dying may or may not be able to talk much during this time. As a general rule, you will want to keep conversations short. If there are unresolved conflicts, this is not the time to process through who said what when. People at the edge of life have very little energy. However, they are often moved to express love and forgiveness, and to receive love and forgiveness. It can be very healing to simply let the dying person know how much you care, how much they meant to you, and the ways they contributed positively to your life. Other suitable activities include reading to the patient, praying, singing, quietly holding hands, or listening to music.

Some family members feel strongly about being present at the time of death. Indeed, many people who die speak in the weeks before of being afraid of dying alone. At the same time, it can be difficult to "let go" when all of your family is present. Some people seem to almost choose when they go and in fact "wait" until their close family members have left the premises before they die. In the last few days, it seems to help the person who is dying to be given assurances that the survivors will miss them but will manage without them and that it's all right to let go.

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Common problems and how you can help

Some family members are tempted, especially as the breathing becomes irregular, to call an ambulance and move their loved one to the hospital. Certainly that is an option if keeping the dying person at home is too traumatic for the family. However, for the person who is dying, the commotion surrounding a move to the hospital may be very uncomfortable indeed. It's wise to talk with the patient weeks ahead of time to determine where it is that he or she prefers to die. You may want to consult with your family physician to learn what you can expect at the end and make plans about what you will do as death approaches. There is usually no need to go to a hospital. Death is, in fact, a normal process. But if you are feeling uncomfortable as the time gets closer, the advice of your doctor or nurse may be helpful.

In addition to loss of appetite and loss of awareness, the person who is dying may experience other symptoms of the body closing down its systems. For instance, as the circulation gets weaker, they may develop spots or streaks of blue or purple, and their fingernails, lips, and toenails may become blue or gray. This is a sign that death is approaching. If the knees are pink or red and the hands and feet are warm to the touch, the death will probably not occur for several days.

Toward the end, although the hands and feet might feel cold, the body's internal thermostat may start to break down. The patient may feel hot inside and sweat profusely. Such temperature fluctuations are normal, and the goal is simply to do what you can to make the person comfortable. If the patient seems especially restless, try removing some layers of clothing or blankets. It may be that the covers are too warm.

Depending on the illness, there may be a strong odor. The patient may or may not be able to smell it, but it can be distressing to family members. Do what you can to be sure the patient is kept clean, but also open windows when possible and consider putting flowers or other nice smelling fragrances in the room.

Sometimes in the last week or so the patient may experience involuntary movements of the arms and trunk. He or she may or may not be aware of these movements. For instance, it is not uncommon for people near the end to be lying down but reach out, as if to be embraced or lifted up. Although disconcerting to witness, this does not appear to be uncomfortable or distressing to the patient. Many patients are not even aware that they are doing this. Some patients may experience mild seizures toward the end. If so, there are medicines that can be given to reduce the frequency or intensity of the spasms.

The person you are caring for may call out now and then. It can be difficult to know whether or not these noises are related to pain. They can just be involuntary vocalizations. If you know your loved one has a tender area, you may want to gently touch it. If he or she calls out in the same manner, then the vocalizing may be a reflection of pain and you might want to increase pain medications. If there is a particular spot that is especially painful, applying a heating pad, hot water bottle or microwavable pillow can alleviate the pain/tension cycle. (Be sure you buffer the source of the heat with a layer of cloth as direct contact with the skin can cause a burn. Do not apply heat to areas that are still red from radiation treatments.)

The most common discomforts in the last few days are parched lips and delicate skin. Olive oil, vaseline or lip balm can do much to relieve dry chapped lips, as can swabbing the mouth with sponge "toothettes." Some people like sucking on ice chips or a wet washcloth to relieve the discomfort of a dry mouth. Delicate skin conditions can be remedied with lotions and having the person change position every two hours. You will find more detail concerning personal care in our article on caregiving tips.

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The moment of death

Unlike the movies, the actual moment of death is often vague and even anti-climactic. As mentioned before, there is a tendency for the breathing to become spread out and irregular. Sometimes there is a shudder or a brief sigh at the last breath, but often the last breath is as uneventful as the ones before it; there simply isn't a breath afterward. Lack of breathing and lack of pulse (heartbeat) are the sure signs that a person has died. Often the muscles in the jaw relax and the mouth will open slightly. The eyes, too, may open and stay that way. Sometimes there is a bit of fluid that comes out of the mouth, and for some, the bladder and bowels may release at the time of death.

If you think your loved one has died, check the breathing and heart rate. Actually pronouncing the death can help the survivors present in the room to make closure and move on to the next phase of the vigil.

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What to do immediately after a person dies

Many people think they need to call someone official right away. In fact, all you need to do is note the general time of death. There is no reason to rush calling the doctor or the mortician, unless that is your preference. You may find that you and the others present want to spend some quiet, reflective time with the body, together or separately. Be gentle with yourselves and move slowly. You will have witnessed a profound event and you are likely to be quite open and emotionally vulnerable. Give yourselves time to process what you have been through and to say your good-byes. If you are planning to bathe and dress the body yourself, you will probably want to do this within the first hour, before it starts to stiffen. If the eyes are open and you would prefer them to be closed, you will want to close them fairly soon after death. You may also want to roll up a towel and place it under the chin if you prefer that the mouth remain closed.

Once you make phone calls and get the outside world involved, you begin to limit the time you will have left with your loved one. You may wish to contact close friends and relatives and tell them of the death. They might also appreciate some time with the body before it is taken away. Rest assured that the morticians can come many hours after the death. The body will not decompose that quickly.

When the morticians do arrive, there will usually be two of them. They will need to ask a few questions and then spend some time preparing your loved one's body for transport. They are usually sensitive to the situation and understand that this is a very difficult time. They will bring in a gurney with a big leather bag and will eventually need to put your loved one's body into the bag, wheel it out on the gurney to their vehicle and take it to the mortuary. It is advisable to have said your good-byes before they move the body, rather than at the door, as many family members find it traumatic to witness their loved one leaving in this manner.

After your loved one's body has been taken away, you may well feel a bit numb or empty. It is not uncommon to feel distant or removed from the situation. Sometimes it helps to talk with others, but you may feel more like spending some quiet reflective time alone. Many people have a mixture of feelings, including grief, anger, relief and guilt. All of them are quite normal.

Often people feel pressure to get on the phone immediately and start letting others in the family know about the passing. If you don't feel up to this task, it's fine to let it wait, or to ask someone else who is a little less impacted by the death to make the calls. While it may not seem like it at the moment, there is actually plenty of time to get done what needs to get done. Honor your impulses and allow yourself to process your loved one's passing in the way that feels most comfortable to you.

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