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March 17, 2008
Creating Memories by Routinely Avoiding the Everyday Routine

March 3, 2008
Redefining 'Service' in Caregiving Terms

February 18, 2008
Amidst Caregiving’s Demands, Taking 22 Minutes to Witness a Life

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Posted: January 21, 2008

Family Caregiving

Planning for the Last Days of a Loved One’s Life

When a family member is terminally ill, the day arrives when relatives who are not able to be primary caregivers receive a phone call and are told that now it is time to come for the final goodbye. On answering such a call, it’s not at all unusual to wonder, “How do I prepare for this trip?”

Susan expressed this question in her email to me after learning of her mother’s imminent death. Her words echo other inquiries I receive quite frequently. My response to Susan is woven with the memories of many families I have supported as they readied for this final stage of the journey.


Dear Barbara:

I just received the call from my sister telling me that my mother only has weeks to live. My sister has been the primary caregiver for my mother for the past two years. Can you give me any advice about how to prepare to make this trip home to see my mother in her last days?

Susan, San Antonio, Texas

Dear Susan:

Before you travel, I would encourage you to call and talk with at least two people who are involved your mother’s care to learn their perception of the current situation. If hospice is involved, you might consider having a conversation with the hospice nurse. This will help give you a sense of what it might be like when you arrive.

If you have never been present for a death, I would also encourage you to seek out someone to explain to you what happens during the actual experience of dying. Being prepared for what you may see, and understanding the natural progression of a body’s changes at the end of life, can go a long way in supporting you to be present for your mother, yourself, and your family.

At the end of life, there are opportunities to care 24 hours a day. It’s a good idea, therefore, to take along several changes of clothing that you are comfortable wearing night and day. This allows you to be present and public simultaneously throughout the experience. As your mother comes closer to the time of her death, you and your family will likely move into kairos time -- time that is defined by “that which needs to happen next” -- rather than remaining in chronos time, as defined by a clock. Time, as you have known it, may begin to appear irrelevant.

Since touch is one of the major ways you can communicate as the body shuts down, you might want to consider purchasing some lotions or massage creams that your mom would enjoy. I favor the unscented or lightly scented varieties (such as shea butter), but you also might know of a special scent your mother likes. Collect some of your mother’s favorite music that you can tuck in your bag or load on your iPod.

What you are doing as you get ready to travel, is preparing for various possibilities. Only you will know what is appropriate when you arrive. Your family history does not necessarily dictate what will likely happen during this time.

When you arrive, I encourage you to listen with all of your senses. Even if touch has not been a part of your relationship with your mother, she may welcome it now. A gentle touch of her hand or a kiss on the cheek may get a different response than it did in the past. Doors may open for you to massage her hands and arms or comb her hair. Let your mother’s responses lead you. What does she need in order to have a peaceful death? Who does she need to see and what does she need to experience to be ready to leave?

In his book The Four Things that Matter Most: A Book About Living, Dr. Ira Byockidentifies four things we all want to hear before we die: “Please forgive me. I forgive you. Thank you. I love you.” In my experience, words can get in the way of forgiveness. Forgiveness can be expressed through presence, touch, or recounting the gifts and kindnesses that the person has given you in life. Forgiveness can also be the subtext of “I love you.” Only you will know what needs to be said to bring peace and resolution to relationship at the end of your mother’s life.

It takes courage to show up for death. You are wise to want to prepare. Trust that as you support your mother in her death, she will teach you about life.

Send your questions and comments to Barbara Bernard at Barbara is an experienced family elder-caregiver, writer and public speaker living in Eagle River, Alaska. Within a single week in 2001, both of Barbara’s parents were diagnosed with a terminal illness. Barbara and her family cared for both of them at home in the months preceding death. Her reflections from this period were the inspiration for her book, The Secret Gift: Growth in Times of Loss, first published in 2005.

© 2008 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.
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