End of life: Caring for your dying loved one
The doctor says your loved one is dying. Though you knew the end of life would come eventually, you might not feel prepared to let your loved one go. But you can be prepared to help make your loved one's last days of life as comfortable as possible. And understanding what to expect can reduce the anxiety you feel as the end of life draws near.
You can begin by learning about the common signs and symptoms of impending death. Though some signs at the end of life, such as irregular breathing and confusion, can be distressing, know that these are normal parts of the dying process.
How doctors can tell when the end of life is approaching
Predicting exactly when someone will die is very difficult. Doctors can estimate the end of life in terms of months, weeks or days. But some terminally ill people who seem near death will suddenly get better. Others will progress quicker than expected toward death.
In general, several signs can indicate that your loved one is at the end of life and is beginning the dying process. This is called the pre-active phase of dying, and it generally begins about two weeks before death, but this can vary. Signs that your loved one has entered this phase of the end of life include:
- Difficulty getting out of bed. Many formerly active people may find they no longer have the strength or energy to get out of bed at the end of life.
- Restlessness. This may manifest as agitation or the need to be moved or repositioned often.
- Withdrawal from activities. Your loved one may no longer want to participate in social activities he or she used to enjoy.
- Increased need for sleep. Your loved one may spend most of the day asleep as the end of life nears.
- Loss of appetite. It's natural for people who are dying to gradually reduce the amount they eat and drink. Don't force your loved one to eat and try not to take it personally if he or she refuses a meal you've spent time preparing. Provide only the foods that your loved one wants. Eating or not eating won't slow down or speed up the dying process.
- Pauses in breathing. This can happen when the person is asleep or awake.
- Difficulty healing. Wounds and infections may not heal.
- Swelling in the arms and legs. Swelling may occur in other areas of the body, as well.
- Seeing people who have already died. Your loved one may speak about seeing or feeling the presence of loved ones who have died.
- Settling unfinished business. This might include calling for people he or she hasn't seen in many years or expressing a need to tie up loose ends.
Sometimes your loved one might feel as if death is near. This may be another sign that your loved one is in the pre-active phase.
Preparing for the last phase of life: Choosing where to die
Talk with your loved one about his or her wishes for the last phase of life. These conversations can be uncomfortable and difficult, but they provide your loved one with the ability to maintain control and help in planning. Ask your doctor or your loved one's doctor for suggestions on how to start such a conversation.
If your loved one has had a chronic illness for some time, you might have already discussed his or her wishes about end-of-life care. If not, you might have an idea, based on your knowledge of the person, where he or she would like to be in the last days of life. Most people say they'd prefer to die at home, but it isn't always possible. Consult your loved one on his or her preferences for care, including:
- Home care. Many people choose to die in the familiarity of their own home or the home of a family member. This might require you to take on the role of caregiver, but you might also choose to have home care services to assist you.
- Hospice care. Hospice care takes place in a variety of settings. The majority of hospice care in the United States occurs at home. Hospice services might also be provided in a 24-hour residential care setting. Hospice personnel may offer their services at a nursing home, where they supplement the nursing home's care.
- Hospital. Some people prefer the comfort of having nurses and doctors nearby at all times. In a hospital, your loved one is cared for by nurses, though you can help with some of the caregiving if you wish.
- Nursing home. Like hospitals and in-patient hospices, nursing homes have medical staff on duty at all times. If your loved one needs more advanced care, this might be an option. Also, some terminally ill people choose nursing home care to take pressure off their families.
Also consider costs for each type of service. Medicare or Medicaid may cover some of the costs, depending on your loved one's situation. Discuss your options with your loved one's health care team or with a social worker.
Spirituality at the end of life
Many terminally ill people seek religious or spiritual guidance at the end of their lives. Spirituality is the search for the sacred and the pursuit of meaning and purpose in life. It might be described as a dynamic process of turning inward to reflect on life, but at the same time turning outward to seek that which is beyond daily experience. For many people, spirituality is found in religion. Others find spirituality in nature, art, music or life in general.
As your loved one feels the end of life approaching, he or she may talk more often about spirituality. Your loved one may talk about the meaning of life or his or her relationship with a higher power. Talk with your loved one about spirituality if he or she wants to. Ask open-ended questions about his or her beliefs, such as, "What do you think your purpose in life has been?" or, "What is it that you still hope to do or accomplish in your life?" Depending on your loved one's wishes, customs and beliefs, you may want to invite a spiritual leader — be it a pastor, rabbi, imam or community elder — to visit.
Do what's appropriate for your loved one's situation. If your family normally doesn't speak of spirituality openly, don't force the subject. But discuss spirituality if your loved one brings it up.
What to expect in the last days of life
Your loved one may begin to show other signs when death is imminent. This is called the active phase of dying and usually begins about three days before death. How people die varies greatly, but you can expect some of the common signs, including:
- Cool arms and legs. While the hands, arms, feet and legs will feel cool to the touch, your loved one's trunk will feel warm.
- Bluish coloration. Fingers, earlobes, lips and nail beds may turn blue.
- Purple coloration on the legs. Also called mottling, this blotchy coloring is one of the clearest signs that death is approaching.
- No longer eating or drinking. Your loved one may not feel like eating, or he or she may no longer be able to swallow.
- Congested breathing. Noisy breathing is sometimes called the "death rattle." As secretions from the lungs build up, your loved one may no longer be able to cough up these secretions. Eventually the secretions will dry up because your loved one's body may become dehydrated after he or she stops eating and drinking. Medications can control congestion if your loved one feels uncomfortable.
- Irregular breathing. Breathing patterns may change in depth and rate. Your loved one may also stop breathing for several seconds at a time. Keep in mind that your loved one generally isn't aware of these changes.
- Discolored urine. If your loved one stops taking in liquids, there will be less urine and it will be darker in color.
- Incontinence. As muscles that control bowel movements and urination relax, your loved one may experience incontinence.
- Blurred vision. His or her eyes may appear glassy and unfocused.
- Limited ability to communicate. Your loved one may lose the ability to speak. He or she most likely can still hear you.
- Confusion and agitation. This can be subtle or pronounced, involving jerking motions, hallucinations or delirium.
| If your loved one: | Try these comfort measures: |
|---|---|
| Has arms and legs that feel cold to the touch, but the trunk feels warm | Use a blanket or sheet to keep him or her warm. |
| Is no longer eating or drinking | Resist the urge to force your loved one to eat or drink. Have water on hand with a straw, since lifting a cup may become difficult. Keep your loved one's mouth moist with a sponge, swab or a spray bottle. Use lip balm or petroleum jelly on the lips. |
| Has congested breathing or a rattling sound when breathing | Keep the head of the bed raised and reposition your loved one every few hours. Ask your loved one's doctor for medications to help this. |
| Has labored breathing | Direct a fan toward your loved one's cheek, try opening a window to let in fresh air, or try other sitting positions that may ease labored breathing. Medications from your loved one's doctor can ease labored breathing. |
| Has incontinence | Keep your loved one clean and dry using incontinence pads or a catheter. Reposition him or her every few hours. |
| Has reduced or blurry vision | Use soft lighting. Stand near the head of the bed so that your loved one can see you better. |
| Has an overactive sense of hearing | Avoid loud noises and television. Try soft music. |
| Is no longer able to speak | Your loved one may still hear and feel. Talk in a soothing voice and hold his or her hand. |
| Shows disorientation, confusion | Speak in short phrases. Repeat the names of people in the room often and remind your loved one of the date and time. |
| Is agitated | Create a quiet and peaceful atmosphere. Have a minimal number of people in the room. |
Work with your loved one's doctors and nurses to make death as symptom-free as possible. Many signs and symptoms of imminent death can be treated, such as pain, anxiety, shortness of breath and delirium. While these treatments won't stop your loved one from dying, they can make the process easier for both of you. Report any signs and symptoms that you are unsure of and don't hesitate to ask questions if you're unsure of what's going on.
Even in a coma, your loved one may still hear you. Though he or she might be unable to speak or might seem asleep, continue talking in a soothing voice. Reassure your loved one that you'll stay nearby. Hold or massage your loved one's hands or feet, or stroke his or her hair.
In the last few days of life, consider what your loved one would want. Was he or she someone who enjoyed having lots of friends and family around? Perhaps you could invite family over to sit with your loved one to share stories and reminisce. If your loved one was a solitary person who enjoyed quiet time alone, perhaps that would make him or her most comfortable.
The final surge of energy
Often when people are dying, they will reach a period of time when it seems they're getting better. Your loved one may wake up and may be able to communicate with you. These surges can last for a few hours to a few days. Though it can be confusing for you to see your loved one with renewed vitality, keep in mind that this is a normal part of the dying process, and your loved one may not actually be getting better. The final surge of energy is often a good time to gather your family and close friends to say final goodbyes.
Keeping vigil
For many families, keeping vigil near the dying loved one's bed is an important show of support and love for the dying person. Whether you do this depends on your own customs and beliefs. If you decide to keep vigil, continue speaking to your loved one. Express your love for him or her, but also let your loved one know that it's all right to let go. When keeping vigil, understand that some people prefer to die alone. People who were independent or private in life may choose the same in death. Don't hesitate to step away from your loved one's bedside from time to time to allow for this.
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