Living With Dying articles

Signposts on the Journey to Dying

By Leah Carey
Sept. 13, 2016

When Martha Jo Atkin’s father went through the death process earlier this summer, she was able to be at his side. And though there were moments of grief during the four weeks that it took Noble to “unwind” from his life, there was not a lot of fear for Martha Jo. 

She knew what to look for – earlier this year she wrote the book on what happens as people die. In “Signposts of Dying : What You Need To Know,” Martha Jo shares what she has witnessed over many years sitting with people as they are dying.

With chapter titles like “Signpost: Seeing, Hearing And Feeling What You And I Cannot” and “Signpost: Conversations About Cars,” this is a book that helps those of us who are sitting with our loved ones as they die to understand the journey they are taking. Each chapter offers short explanations of each behavior and then “helpful” and “not helpful” ways to respond.

Martha Jo is the executive director of ABODE Contemplative Care of the Dying in San Antonio, Texas and has given a popular TEDx talk on deathbed phenomena. She is also a licensed professional counselor with a PhD in counselor education and supervision.

“Very often I will hear people talking about wanting to go home,” Martha Jo said during a recent phone conversation. “Family members will assume often that this means a physical home somewhere, and it may well be. And often there are other layers to that home.”

Going home and making travel plans are frequent subjects, as are ways to exit their body. “People will talk about leaving the door open – how do I get out of here?” Martha Jo said. “My dad would say, Unhinge me.”

Grief for her own father, who passed July 21, is still fresh for Martha Jo. Today as she talks about the common signposts of dying, she is able to refer to specific examples from her time at Noble’s side.

“They will ask where their suitcase is, they’ll ask for their bags. Even if they’ve been in the bed for days or weeks or years, they’ll want their shoes, or the things that will help them travel, or the things important to them,” Martha Jo said. “My dad needed his pocket knife. We would bring it and put it by the bedside table for him and he would calm down. They’re traveling things.”

Martha Jo also witnessed other typical signposts as she watched Noble taking his journey.

“He called for his mother, and he saw my mother [who was previously deceased]. Very classic things that you read about in the literature about pre-death visions, he did those things,” Martha Jo said. “One evening he was complaining because it was bright. The door had been opened and it was bright and it was bothering him. Nothing had changed – things were changing in his mind and body.”

Another common behavior as people are dying is what Martha Jo calls “reaching.”

“It’s kind of slow and the hand just raises up a little bit and they’re reaching up toward something right in front of them,” she explained. “As the dying process deepens, and the person has turned more inward, the reaching changes. They see things midway around the room. And as they’re very deep into the process, you’ll see them look directly overhead and reach directly overhead. He did those things. For a couple days he was tracking things right above him.”

Something that can be very challenging for caregivers and family members, she said, is the transition from doing for the patient to being with the patient.

“The world here is very busy and there are things to do and see out in the world. But the dying have work to release their spirit from their body, or whatever you believe that is,” Martha Jo said. “It’s almost like a sinking-into-themselves so they can do their work. Family members will come in and try to wake the person and try to get them to talk … There’s going to be a point where your person doesn’t talk anymore. This is the time they are doing the work they need to do. The ways you can support them is to be with them.”

Recently she sat with an elderly woman whose son was dying. “She wanted to do those things for him,” Martha Jo recalled. “She wanted to do – and the point comes when the doing is sitting and being with him and breathing.”

At ABODE, Martha Jo and her staff regularly talk with clients about what they might want after they are no longer able to communicate. “Do you want people to rub your feet, stroke your face, rub your head, when you can’t talk anymore?” she said. “People worry about having the conversation because they think it will upset the dying person. but I have not yet had a situation where the person I’ve been talking to was not eager to engage with me.”

Sitting with her own father, Martha Jo had a lot of down time, too. “There are times when it’s really just sitting beside the bed and reading or holding their hand. I stared out the window a lot with Dad. There was a lot of sitting and waiting and thinking and reminiscing. And eating! There was a lot of eating!”

There would be long stretches of silence – four or five hours – and then he would make a comment. “How do I get out of this room?”

Martha Jo wants people to know that, while there are many common signposts, every death experience is unique. “Someone’s dying experience is like a thumbprint. It’s different,” she said.

She also hopes that loved ones won’t fixate on the last days or weeks of a person’s life. “They’re a piece of a whole life. They’re not the whole life. Sometimes people get caught up in a terrible death or a fantastic death – whatever we decide to label it and the meaning we decide to give to that,” she said. “I really invite people to think of the whole of life. It may not be ideally how the person and the family wanted it to go, but there was a whole life that existed.”

A Graceful Goodbye - Personal reflections from Leah

Mom had a favorite buckwheat pillow that she had been carrying around with her for months. She would often say to me, “Where’s my purple pillow?” As everything became harder for her in the last week, her sentence shortened to, “Purple pillow?” In her final couple days of lucidity it became just, “Purple!”

She was in the “active dying” phase for about three months, progressively becoming weaker and less vital.

During those months, she exhibited some of the early signposts that Martha Jo describes in “Signposts of Dying.” It made me sad to see them, but they made sense to me.

Helping her sort through papers, even when she had almost no energy for it, was necessary for her to feel like she had put things in order for me.

Giving away belongings to people she loved helped her feel like she was participating in the memories others would carry of her.

Hearing her speak of the crowd who were gathered around her bedside waiting for her was the closest thing I can imagine to pure grace (it’s a story I will tell later in this series).

In the final days, though, everything shifted, and I was no longer able to make sense of what I was seeing.

Perhaps if I had thought about it, it might have occurred to me that her ability to communicate would be compromised as she approached the end, and that she would start acting differently as she began to detach from her body. But I was so wrapped up in the 24/7 effort of caring for her, it never occurred to me to think beyond the moment we were in.

Prior to my mother’s death, the only exposure I had to what death might look like was Hollywood’s version – a person lies quietly in bed, opens her eyes one final time to say something lucid and wise, and her head falls to the side as she expels her last breath.

I was totally unprepared for what my mom’s final hours and minutes of life would look like. It was nothing like what I had come to expect. There was thrashing and groaning and rattling and more.

It was hard to watch (and I don’t imagine anything would have made it easy.) But I think a little preparation could have gone a long way in making it less traumatizing. If someone had sat me down and said, Here are some of the things you might see, I would have known it was normal. That would have gone a long way to easing my mind when it was actually happening.

I would have known that her throwing herself out of bed when she had no strength to stand was the beginning of her journey.

I would have known that her wild thrashing movements were part of letting go of her body.

I would have known that the changes in her breathing were normal and she wasn’t choking.

Not knowing those things, it all looked like extreme suffering. And I was left with the feeling that, no matter how hard I had worked to make those last few months manageable for her, I had failed her in her last few hours. Reading Martha Jo’s book, I realized it wasn’t true – in fact, I learned, we had done a pretty damn good job.

The question is – whose responsibility should it be to sit down with family and give them this information? It is shocking to look back at my mother’s death process and realize that while lots of people talked to us about keeping her alive and comfortable, almost no one talked with us about her death.

The only conversation anyone had with us about the actual death process was when Mom pointedly asked her primary care doctor what it might be like. I appreciate that he didn’t shy away from answering, but I realize now that what he said reinforced my belief in the Hollywood stereotype. You’ll sleep more and more, he said, until at some point you don’t wake up.

Beyond that one conversation no one – neither doctors, nor nurses, nor hospice – spoke with us about what death actually looks like.

I realize that not every family will want to have these conversations – some people are scared of knowing. But for some (like me) even if the truth is scary, it’s less scary than not knowing.

I discovered Martha Jo’s book, and began speaking with her by phone, a couple months after my mom passed. While I don’t intend for this series to advocate for any particular idea or product or service, I have personally recommended “Signposts of Dying” to several people. I only wish that I’d had it a few months earlier because it could have eased my suffering.

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