Thoughts about the end of life, Being with a person who is dying.
Caroline Stevens RN, MSW360-990-8718
As Death Draws Closer: People often know when their death is approaching.
One reason hospice is so useful is that it helps the individual and their family acknowledge that death is approaching. Hospice staff can help prepare the dying person for the changes that occur as actual death approaches and discuss how they want to be cared for.
As caregivers, or supervisors of caregivers it is important that we are comfortable talking about death. It will help us be more comfortable with others who are dying around us. It will help us support our residents’ friends and relatives who are losing someone dear to them. We will get back to how you can practice this skill, address your discomfort.
Assuming you have been with someone very near death or as they died, what did you observe or learn about the dying process?
They may begin to review their life. They may want to stop eating and drinking. They may ask to go “home”. They may talk about packing a suitcase. They may want to see someone who is missing, or want to talk on the phone to someone. They may become more talkative; or more withdrawn.
Sometimes, the dying person is also in denial because no one gives them an opportunity to talk about what they are feeling. What many dying people want most is someone to really listen to them, to help them let go of their fears. To do that, we need to let go of our own fears, fear of facing our loss of them, or facing our own mortality. The fears of others can keep a dying person stuck.
Visions may come to the Dying Person When people are dying, they may see things we cannot see. People in the room—often loved ones who have died. Or religious figures. (A doctor in an early group led by Trudy James said, “When I die, I want to see Jesus. When asked why he wrote that, he said, “because I’ve had patients who saw Jesus in the room with them so I want to see Him also.”) Or people may see visions of water, or bridges, or clocks. These visions are normal. Medical personnel sometimes think they represent hallucinations or psychotic episodes—but hospice workers know they are normal. Sometimes the dying person is trying to tell the living that they will die soon—using picture or symbolic language. Perhaps you can think of a dying person you attended where something like this has occurred?
Physical Signs that Death is Near There are often some predictable physical signs when a person is very near death. Hospice is valuable because they can point out these signs. The client may “pick” at the bedclothes, or they may reach for something we cannot see. Their extremities often change color, becoming blotchy, bluish and cold. Their breathing may be labored or erratic. There may be a rattle in their throat. Their eyes may be open but they are not “seeing”. This is called “actively dying”. Being with someone who is dying can be a great blessing. They are closer to the other side or to what comes next, whatever we may think that is or if anything—if they are peaceful and surrounded by love, they often become lighter and brighter; the space they occupy has a different feel to it—expansive and light-filled. This can also bring comfort as we contemplate what our own death may be like.
Being with the dying person. Or Others Being with You.
When people are dying, they don’t want to hear about the weather and where
you went on your trip last week. That doesn’t affect them anymore. They want to
hear two things most of all:
- what their life meant to you. You can do them a great gift by telling them. “ I really appreciate when we did ………”, or “I’m so grateful to you for ……”
- and that those they care about are going to be okay. You can tell them that you are going to be okay, —and/or that their children, or their spouse, etc.—will be okay.
Even if they’re unresponsive, you can say those kinds of things. This is a gift you can give to your friends when they’re really sick. You can be the one to get up close to them and say, “ I love you and I’m glad I’ve known you. Your life meant so much to me. I know you will be okay now. “
If that is uncomfortable for you, you can simply sit and hold the person’s hand. Or you can tell them stories about themselves and the things you’ve done together.
Hearing may be the last to go! Sometimes the people around them in the room are talking to each other about things that don’t matter to the sick person. Maybe they’re talking about the movies or about a ballgame— because they think the person can’t hear or because they just don’t know what to say. We believe the dying person can often hear clearly. People who have gotten gotten better, who haven’t died right then, sometimes talk about what they heard while nobody thought they could hear. Instead practice softly tell the loving “remember when” stories to each other when gathered at the bedside. Or read poetry or sing softly.
If a dying person is agitated, music therapy often causes them to relax and helps them to let go. We know that they can hear it or that the vibrations affect them. Threshold Choirs provide this service. Hospices also often have harpists trained in music thanatology.
The Real Work of Dying: There are four things that that we can identify as “The Real Work of Dying”
- Life Review . People may want to talk about the good parts and or the bad parts of their life. It is helpful if they have someone who can listen and reassure them that their life was acceptable as it was. We can review life
anytime and think about what it meant. We don’t have to wait.
Here’s a story about Trudy James’ written by Trudy.
My own mother, during the last visit I made to her, was deciding to die, but I just didn’t get it. With all my experience, because it was my mother. I didn’t get that she was trying to review her life.
She kept saying to me, see those pictures on the wall? Those are my three children. See my three children. I have three good children.” “ I was a good mother, wasn’t I? I always did my best.” And she woke me up in the night to say, “I love you and I’ll always pray for you.” And “Always remember your family. Always remember your God. Always remember I love you.” She had a lot of dementia and often repeated things, but these were things she had never said before. Later, after she died, I realized that she had been reviewing her life and asking for forgiveness. She was actually doing the real work of dying.
- Forgiving and being forgiven, which may include waiting for someone to come.
3.Saying I love you and thank you . This is important work and it is something we can do often and at any time, but especially important when someone is dying.
- Saying goodbye. I highly recommend a novel called Benediction by Kent Haruf. You may know him as the author of Plainsong, which won a Pulitzer prize. Benediction is about a man who is dying, and his experiences as he proceeds from hearing a terminal diagnosis for the first time to his death.
Planning for the best possible death for others means having a positive understanding of death and envisioning a good ending/ the best possible death for oneself, and then doing all that we can to help it happen. Taking some of the focus off of what we do not want—and putting energy into what we do want.
This requires doing one’s own Healthcare Advance Planning. When I was in training with Trudy James, I was required to attend a “Speaking of Dying” workshop series to develop by own Healthcare Advance Directive document. The workshop was led by one of Trudy’s “minions, “ as I like to call us. As I did that and began offering the workshop as a facilitator, I came to understand how most of us don’t learn the language to speak about death and dying, not to mention our own. (When I completed my training, I received a certificate, and a tee shirt. The shirt said “Speaking of Dying” on the front, and “Don’t Do It Alone” on the back.
I’m attaching a resource list for you. I hope you will consider reading, watching, or contacting some of the resources I share with you.
Best, Caroline Stevens RN, MSW and Trudy James CPE (revised) May 2021