Being with the dying
By Terre Mirsch
As a hospice and palliative care nurse, I have had the honor of being at the bedside of many during the dying process and at the time of death. It was a privilege to share in this journey, as a role model and mentor for the patients and families that I cared for. For caregivers, having access to a team of professionals who can serve as a guide and provide support during a time of doubt or apprehension is one of the greatest advantages of hospice care.
For many family caregivers, being at the bedside of a dying loved one is difficult. It is not uncommon to struggle with the idea of “being with” rather than to “doing for” those that we care about. We often pressure ourselves to do or say just the “right” thing when few caregivers have experience in knowing what to expect during the dying process, or have witnessed someone they love taking their last breath. Even those of us who know what to expect in the dying process sometimes struggle with knowing what to do or how to be when death impacts our own family or friends.
There is no right or wrong way to be with the dying. And while there is no need or ability to have all of the answers, the following guidelines may help you to feel more comfortable during this time:
- Understand that “being with” is more important than “doing for” during this time. Give yourself permission to be with your loved one at the bedside. The cooking, cleaning, yard work, and other chores can wait for another time.
- Touch lets your loved one know that you are present. You may touch your loved one if that is comfortable for you and for them. You may choose to lightly stroke their hands, feet, or back with moisturizing lotions, or to hold your loved one’s hand.
- Provide mouth care with toothettes, ice chips, or drops of water to moisten a dry mouth. Apply a nonpetroleum-based lip balm to moisten dry lips. Apply cool (or warm) compresses to the forehead.
- Talk to your loved one if you want to, as they may hear you even if they are not able to respond to your touch or your voice. You can share your favorite memories, read books or poems, pray, or play favorite music. However, do not feel pressured to talk if that is not comfortable for you, or if your loved one preferred quiet or reflective time over talk.
- If your loved one reports seeing or speaking with loved ones who have died, or is speaking about symbols such as butterflies, lights, going on a trip, or going home, allow them to talk if these things are not disturbing to them. This experience is referred to as nearing death awareness and it is usually best not to try to talk them out of what they believe they see.
- Avoid talking “about” your loved one as if they are not present. Include them as part of the conversation, even if they are not participating or are not responsive.
- Focus on the present—the here and now—and be open to whatever comes. Your presence is a gift to your loved one.
- Saying “goodbye” may be an important part of closure for you and your loved one. Leave nothing unsaid that might bring you and your loved one peace and comfort.
- Give yourself permission to take a break. It is “OK” for your loved one to have quiet or alone time as well.
Being with our loved one during the dying process can be a time when we have more questions than answers, more uncertainty than conviction, and more vulnerability than strength. But by being present in whatever way we are able, it can also be a sacred time of wonder, beauty, and love.