Caregiving At the End of Life

Caregiving at the end of life involves much more than the practical tasks of helping a person with cancer. It’s also about letting your loved one know, through your words and actions, of your love and commitment. It’s about promoting an atmosphere of peaceful acceptance. Your role as a caregiver is a challenging one. You will need support, too, as you do the important work of comforting and supporting your loved one.

Here are some things to consider when you are caring for someone who is near the end of life:

Create a peaceful atmosphere. Sometimes words are unnecessary. Play soft music or light scented candles (but avoid open flames if your loved one is using oxygen). Keep your loved one warm, clean, and comfortable. Gentle physical touch and reassurance can be powerful.

Expect an altered appetite. Providing food and drink is a basic way of showing that we care for someone. As cancer progresses, however, your loved one’s need for food and drink will likely diminish. He or she may decline food or be unable to eat or drink. Be aware that a seriously ill person can choke on food or fluid. Talk with your health care team about the best way to respond to changes in your loved one’s appetite.

Understand silences. Keep in mind that your loved one’s voice may weaken. He or she may talk little and avoid long conversations. He or she may also seem disengaged from family, friends, and everyday activities. This is normal as the end of life nears. Even if your loved one does not seem alert, be aware that he or she likely can still hear what is going on nearby.

Be a good listener. At times, your loved one may want to talk. It is important to let him or her speak freely. Listening may not be easy. Your loved one may speak of sadness and fear of pain or death. He or she may fear being separated from family or anxious about unfinished tasks. Your presence and courage to listen will lessen your loved one’s anxiety and fear.

Attend to spiritual needs. People at the end of life often have questions about death, the meaning of life, guilt and forgiveness, the afterlife, and their relationship with God or a spiritual entity. At times, your loved one may feel angry or abandoned by his or her belief system. At other times, he or she may embrace faith more intensely than before. Be patient and understanding if disagreements arise. Many people find support from a pastor or clergy person helpful in coping with these issues.

Don’t forget humor. If your loved one has always enjoyed humor, resist the idea that you need to be somber or solemn around him or her now.

Look after yourself. You may see your loved one going through changes that are stressful and difficult for both of you. Being a caregiver requires strength and stamina. You need to care for yourself so that you can give your loved one the support and care that he or she needs. Try to get plenty of rest. Ask friends or family members to help out from time to time so that you can take a break.

Get help with practical tasks. A hospice nurse, visiting nurse, or home health aide can assist with the practical aspects of caring for your loved one.

Seek emotional support. There are many sources of support for caregivers. For example, CancerCare‘s professional oncology social workers provide free counseling and support groups for caregivers. Our services are offered face-to-face, as well as over the telephone and online for those unable to travel to appointments or meetings.