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Alzheimer's Disease Health Center

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End of Life Caregiving

Emotional and Spiritual Comfort

In addition to physical pain, your loved one may experience emotional and spiritual pain. They are experiencing many losses including the loss of control over their own life. It is important for you to continue to explain what is happening with your loved ones care, condition, and any other changes.

Tips

  • Try and take time each day to talk to them about their feelings and to share your feelings with them.
  • Be patient with yourself and the care recipient. Listen to what they want to share with you.
  • Whatever feelings they have-let them know that they have a right to feel that way; do not try and talk them out of their feelings.
  • Your loved one may wish to discuss their fears, concerns or distress with someone else, encourage them to do so. Offer to contact a friend, counselor or chaplain, and give your loved one privacy.
  • Ask for help. The best way you can support someone else is to take care of yourself.

Care for Yourself

Caregiving can be a rewarding and exhausting experience. It is important that you manage the stress of being a caregiver by attending to your needs.

Tips

  • Make a list of specific things that you need help with: grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with the care recipient so you can do something else. When someone says "let me know if there is anything I can do" point to the list!
  • Take a break from caregiving-even if it is 15 minutes a day that you do something just for you.
  • Exercise and eat healthy.
  • Subscribe to caregiving newsletters or Listservs for advice/support when caregiving for a loved one.
  • Attend a support group for caregivers.
  • Pay attention to your needs and seek professional help to address grief, anxiety, or other issues. Many caregivers have times when they are lonely, anxious, guilty, angry, scared, frustrated, confused, lost and tired. If you feel like these feelings are overwhelming you, call your doctor, hospice or another community resource (see below) for help.

Being Prepared

Caregiving often comes with new responsibilities and unfamiliar tasks, yet most caregivers never receive training. The following information may help you with a current situation or prepare you for what may happen.

Decision Making
Has the person you are caring for told you their wishes for end-of-life care? In the event that you are asked to make or help make decisions it is important for you to talk about issues, including thoughts about potential life-prolonging treatments. Advance directives are tools that enable people to write down their preferences on a legal form and appoint someone to speak for them if they are no longer able. A living will, health care power of attorney, financial power of attorney, and plan for after care (funeral arrangements) can help ensure peace of mind for the ill person as well as you as the caregiver.

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