At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually failing. For some older people, the body weakens while the mind stays alert. Others remain physically strong, and cognitive losses take a huge toll. But for everyone, death is inevitable, and each loss is personally felt by those close to the one who has died.
Just as each life is unique, so is each death. But there are some common experiences very near the end:
- Shortness of breath, known as dyspnea
- Tiredness and sleepiness
- Mental confusion
- Constipation or incontinence
- Refusal to eat or drink
Each of these symptoms, taken alone, is not a sign that someone is dying. But, for someone with a serious illness or declining health, these might suggest that that person is nearing the end of life.
In addition, closer to death, the hands, arms, feet, or legs may be cool to the touch. Some parts of the body may become darker or blue-colored. Breathing and heart rates may slow. In fact, there may be times when the person doesn’t breathe for many seconds, known as Cheyne-Stokes breathing. Some people hear a death rattle. That is noisy breathing that makes a gurgling or rattling sound. Finally, the chest stops moving, no air comes out of the nose, and there is no pulse. Eyes that are open can seem glassy.
What happens after death
After death, there may still be a few shudders or movements of the arms or legs. There could even be an uncontrolled cry because of muscle movement in the voice box. Sometimes there will be a release of urine or stool, but usually only a small amount since so little has probably been eaten in the last days of life.
Immediately following death, nothing has to be done. Take the time you need to start the grieving process. Some people want to stay in the room with the body; others prefer to leave. You might want to have someone make sure the body is lying flat before the joints become stiff and cannot be moved. This rigor mortis begins sometime during the first hours after death.
How long you can stay with the body may depend on where death happens. If it is at home, there is no need to move the body right away. If your religious, ethnic, or cultural background requires any special customs soon after death, there should be time for that now. If the death is likely to happen in a facility, such as a hospital or nursing home, discuss any important customs or rituals with the staff early on, if possible. That will allow them to plan so that you can have the appropriate time with the body.
Some families want time to sit quietly with the body, console each other, and maybe share memories. You could ask a member of your religious community or a spiritual counselor to come. If you have a list of people to notify, this is the time to call those who might want to come and see the body before it is moved.
As soon as possible, the death must be “pronounced” by someone in authority like a doctor in a hospital or nursing facility or a hospice nurse. This person also fills out the forms certifying the cause, time, and place of death.
These steps will make it possible for an official death certificate to be prepared. This legal form is necessary for many reasons, including life insurance and financial and property issues. If hospice is helping, a plan for what happens after death is already in place. If death happens at home without hospice, try to talk with the doctor, local medical examiner (coroner), your local health department, or a funeral home representative in advance about how to proceed.
Arrangements should be made to pick up the body as soon as the family is ready. Usually this is done by a funeral home. The hospital or nursing facility, if that is where death takes place, may call the funeral home for you. If at home, you will need to contact the funeral home directly or ask a friend or family member to do that for you.
The doctor may ask if you want an autopsy. This is a medical procedure conducted by a specially-trained physician to learn more about what caused death. For example, if the person who died was believed to have Alzheimer’s disease, a brain autopsy will allow for a definitive diagnosis. If your religion or culture objects to autopsies, talk to the doctor. Some people planning a funeral with a viewing worry about having an autopsy, but the physical signs of an autopsy are usually hidden by clothing.
Getting help for your grief
Losing someone close to you can make you feel sad, lost, alone, and maybe even angry. You greatly miss the person who has died—you want them back. You might have also been so busy with caregiving that it now seems you have nothing to do. This can add to your feelings of loss. This is all part of grieving, a normal reaction to the loss of someone you love.
There are many ways to grieve and to learn to accept this loss. Try not to ignore your grief. Support may be available until you can manage your grief on your own. It is especially important to get help with your loss if you feel overwhelmed, consumed, or very depressed by it.
Family and friends can be a great support. They are grieving too, and some people find that sharing memories is one way you can help each other. Feel free to talk about the one who is gone. Sometimes people hesitate to bring up the loss or mention the dead person’s name as they worry this can be hurtful. But everyone may find it helpful to talk directly about their loss.
Sometimes people find grief counseling makes it easier to work through their sorrow. There are grief counselors who will talk with you one-on-one. Regular talk therapy can help people learn to accept a death and, in time, create a new life. There are also support groups where grieving people help each other. These groups can be specialized—parents who have lost children or people who have lost spouses, for example—or they can be just generally for anyone learning to manage grief. Check with religious groups, a local hospital, hospice groups, or your doctor to find support groups in your area.
An essential part of hospice is providing grief counseling to the family of someone who was under their care. Even if hospice was not used before the death, you can ask hospice workers for bereavement support at this time. If the death happened at a nursing home or hospital, there is often a social worker you can ask for resources that can help. The funeral home might also be able to suggest where you can find counseling.
Remember to take good care of yourself. You might know that grief affects how you feel emotionally, but you may not realize that it can also have physical effects. The stress of the death and your grief could even make you sick. Eat well, exercise, get enough sleep, and get back to doing things you used to enjoy, like going to the movies, walking, or reading. Accept offers of help or companionship from friends and family. It’s good for you and for them.
Based on content from the National Institute on Aging booklet “End of Life: Helping with Comfort and Care.”