Nancy Lebrun is a member of the Association of Health Care Journalists and writes frequently on health and wellness.
Jane Gibson has worked in hospice and palliative care for more than 26 years at the non-profit Hospice and Palliative Care in Greensboro, NC. Her wealth of experience and compassion has given her insight into the emotional, psychological and practical challenges that caregivers face when a loved one nears the end of life. When I spoke with her, four themes emerged that touch upon ways to cope and be of service as life grows shorter.
Focus on trying to help rather than "fixing" things
“Helping often means asking the person who is ill what it is they want, " Gibson says. You may think they want to visit a beloved beach house one more time, or go on a “bucket list" adventure, when they might prefer to preserve their energy for something quite different, such as enjoying a quiet afternoon listening to some favorite music on a sunlit porch. Respecting a person's wishes can help give them back a sense of control. “They may not see things the same way you do," adds Gibson. “Sometimes the little things in life become the biggest when life gets small."
Learn to listen and be present
“It is in the sharing of the story, sometimes over and over again, that the healing begins," Gibson observes. “Comforting is not about knowing the right thing to say or do; it is simply about being present. Standing with someone when they are grieving can feel daunting until you realize one very important thing - your presence is always the greatest gift you can offer."
Work on tolerating differences within the family
People have different styles and, at the end of someone's life, the stress and grieving can heighten tensions. Practice patience and compassion for your other family members as well as your loved one. If there is a dispute, offer solutions rather than criticism. Your relative may be struggling in a way that is different from your struggle, but recognize that difference doesn't necessarily mean indifference. You may even find that this is a time to resolve old grievances and grow closer.
Ask for and accept help
“When you are overwhelmed, give yourself permission to be helped," says Gibson. Caregiving often falls largely to one person and though, Gibson notes, “It feels good to be able to help someone, it can be hard to accept the help." Whether you hire a qualified individual or reach out to services in the community, don't be shy about asking for the kind of support you need. You may not want to answer the door, so ask them to leave meals on the porch. You may not want someone to tell you how tired you look – change the focus to setting up a time to deliver medical supplies the next week. If you become worried about your own condition and ability to cope, seek spiritual or psychological counseling. Do not go it alone.
Whether you are experiencing guilt, grief, exhaustion, anger, or all of the above, know that you deserve help and that if you accept it, you will be better able to help your loved one as they reach the final phase of their journey.