Caregiver support: Caring for a dying loved one

Communication

When your loved one is diagnosed with a life-limiting illness, it is important to keep communication as clear and direct as possible. Work at keeping the lines of communication open with your loved one, with his or her doctor, and with your family. Recognize your family's style of communication. How did your family communicate before your loved one was diagnosed with this serious illness? Were you able to communicate freely and openly, or were there barriers to your communication, such as frequent arguments or a lack of sharing? If you encounter barriers, consider visiting a counselor to help resolve difficult issues and to help your family learn some effective ways to communicate.

Talk to your loved one and his or her doctor about the life-limiting diagnosis. Questions to ask the doctor include:

• What are the treatment options?
• How long do you expect my loved one to live?
• What do you expect to happen with this diagnosis?
• What support services are available to help my family?
• Who will oversee and manage my loved one's care?
• Who do I call if my loved one is having problems, such as pain?

Talk to your loved one about his or her wishes. What end-of-life goals does he or she have? How do these goals compare with yours? If your loved one has not communicated his or her end-of-life wishes, talk about them now. Important issues to discuss include:

• Treatment goals.
  • What type of medical treatment does he or she want? Is it curative, life-sustaining treatment, or care focused on maintaining comfort and controlling symptoms without curing the illness?
  • Has a legal document to express these health care wishes-called an advance directive-been written?
• Personal and family goals.
  • Discuss your loved one's end-of-life goals. Are there things that need to be done? Are there relationships that need mending? Allow opportunities for your loved one to talk about his or her life, to reflect on accomplishments and share any regrets.
  • Share your goals. What do you need to do to be able to say good-bye? Do you share similar goals with your loved one? Are there goals or desires that you may not be able to honor? It is important to share your goals with your loved one.
• Location of death. Your loved one can die at one of several locations, including home, a hospital or nursing home, or possibly a local hospice house. There is no "right" place to die.
  • Some people want to die at home surrounded by family members. Hospice services often can help a person be allowed to die at home. Some people may be reluctant to die at home because they are concerned about the welfare of their loved ones or they are fearful about not receiving the medical care necessary to control their symptoms.
  • Where do you want your loved one to die? You may want him or her at home, where you can help provide care. What concerns do you have about caring for your loved one at home? You may be hesitant to have your loved one die at home because you are concerned about your ability to care for him or her. This is often a concern for family members who are elderly or who have health problems of their own. You may be reluctant to live in a house in which someone has died.
• Funeral plans. Does your loved one want a funeral or memorial service? Does he or she prefer burial or cremation?
• Finances.
  • What financial support is available to help you care for your dying loved one? Hospice services are a benefit of many private health insurance policies; check your health plan for specific information about hospice coverage. Also, if you qualify for Medicare benefits, hospice services are covered through the Medicare hospice benefit.
  • When your loved one dies, will you be able to manage the finances? You may want to meet with an attorney to discuss financial and estate issues. A social worker from your local hospital or hospice may be available to provide financial consultation.

Taking care of yourself

Caring for a dying loved one can be a rewarding but difficult experience. There are services available that can provide help and support to you and your loved one.

• Hospice is a program that includes palliative care to manage symptoms. Hospice also offers a wide range of services to those who are dying and to their loved ones. Many hospice programs are provided in the dying person's home, although hospice services can also be provided in some hospital and nursing homes. Some communities have freestanding hospice houses. For more information on hospice services in your area, see the topic Hospice Care.
• Many hospitals have support groups to help people who are caring for a dying loved one. Meeting with other people whose circumstances are similar to yours can be helpful. Support groups offer the opportunity to share common experiences and exchange useful information. Check with your local hospital for information about caregiver support groups.
• If hospice is not available in your community (or if you choose not to receive hospice), nursing agencies are available in most communities to provide hired help in the home. These fee-based services provide a wide range of services, including housekeeping and short-term or 24-hour nursing care. For nursing agencies in your area, check the yellow pages of your telephone book.
• You may need help with the range of emotions you are facing, such as frustration, grief, or fear. Meeting with a mental health counselor or spiritual advisor may allow you the opportunity to express these feelings. It may also help to discuss your grief with your loved one before he or she dies. Acknowledging your grief may help you deal with some of your concerns and to have closure over your impending loss.
• Realize that your loved one may be depressed and have many concerns, including:
  • Fear of abandonment.
  • Fear of the unknown.
  • Fear of leaving loved ones.
  • Fear of the afterlife.

There are several steps you can take to care for yourself and to make your loved one's care continue more smoothly.

• Ask for help from other family members and friends. Ask others to do the shopping or housecleaning. If you are involved with a hospice program, volunteers are usually available to sit with your loved one while you take a short break. Schedule time to participate in hobbies or activities that are important to you.
• Keep a journal. Expressing feelings and frustrations in writing is helpful for some people.
• Care for yourself. Get adequate rest, and eat a balanced diet. If you have health problems, see your health professional regularly.
• If you are caring for your loved one at home, keep a written record of his or her care. During this stressful time, it is easy to lose track of details. A written record is helpful if you need to communicate important information to the doctor or hospice team.