End of Life

Support For Caregivers

Caring for someone at the end of life can be physically, financially, and emotionally exhausting. Realize this is a difficult time for you, too.

Take Care of Yourself

It is important to care for yourself as well as the dying person. This means taking time to eat nutritious meals, sleep, exercise, and communicate with others. Allow others to show their support by accepting their offers of help. Avoid becoming socially isolated while caring for someone who is dying. Doing so can make recovery from grief much harder.

Although you may feel guilty or anxious about leaving a dying person’s side even for a moment or asking for help, doing so will help you avoid caregiver burnout. There are numerous types of support available to caregivers.

Consider Respite Care

Respite care temporarily relieves people of the responsibility of caring for family members who cannot care for themselves. It is provided in a variety of settings, including homes, adult day centers, and nursing homes.

Sources of respite care include formal providers, such as home care agencies and visiting nurse associations, and informal providers, such as family, friends, and volunteers from faith-based organizations. Make sure any formal provider you are considering is licensed by your state.

Respite care providers can ease the day-to-day demands of caregiving by assisting with

  • toileting, bathing, and dressing (often called “activities of daily living”)
  • giving medicine
  • housecleaning
  • food shopping and cooking
  • preparing and feeding meals (eating is another “activity of daily living”)
  • providing company and emotional support.

Respite care allows you to have a break while knowing that the dying person is being well cared for.

Check Out Community-based Services

Community-based services across the country support independent living and are designed to promote the health, well-being, and independence of older adults. These services can also supplement the supportive activities of family caregivers.

Often, community-based senior citizens' services offer

  • companionship visits
  • help around the house
  • meal programs
  • caregiver respite
  • adult day care services
  • transportation.

These and other support services may be funded by state and county programs or offered by church or volunteer groups.

To find community-based services, contact Eldercare Locator at 800-677-1116 or visit www.eldercare.gov You can also call your local Area Agency on Aging, Aging and Disability Resource Center, Department of Human Services or Aging, or a social service agency.

Ask for Help from Family and Friends

Family and friends often want to help someone who is caring for a dying person, but they may be uncertain of what kind of help is needed. Be prepared to ask for help with specific tasks, such as grocery shopping or sitting with the dying person while you rest.

If possible, make a list of your needs, which might include

  • answering the phone and the door and checking voicemail messages
  • picking up the mail or newspaper
  • doing a load of laundry
  • feeding or walking the family pet and watering plants
  • taking children to play dates or practices
  • picking up medicine from the pharmacy
  • shopping for the groceries and putting them away
  • bringing over a meal
  • babysitting.

Consider the interests of family and friends -- if someone you know enjoys reading, ask him or her to read aloud to your loved one. Someone who enjoys cooking may be happy to prepare an extra serving for you.

Use Online Tools to Communicate

Setting up a phone tree or a listserv for the family to contact friends and other relatives can reduce the number of calls to the house of the dying person. A listserv is a way to send the same message to a large group of people by email.

Some families set up a website where they can share news, thoughts, and wishes. These can all save close family members from the emotional burden of answering frequent questions about how their loved one is doing.

Seek Help from Faith-based and Civic Organizations

If you belong to a faith-based organization, such as a church, synagogue, temple, or mosque, you may have a strong support network ready to assist you in your efforts to care for a dying person.

Even if you do not belong to any such group in your community, you may still request volunteer help from faith, ethnic-based, and other civic organizations whose mission is to provide services to those in need.