Dying Alone Surrounded by Loved Ones

authors_sue_150
Sue Collins

By Sue Collins

Einstein plus technologyI recently witnessed the unfolding of two different deaths with family at the bedside. One daughter sat alone by her mother’s bed. Her mother was in a coma-like state with essentially no response to the bed bath she received only a few hours earlier. The daughter said prayers out loud. She positioned her chair and raised the height of the bed so she was face to face with her mother. She quietly talked to her, sang softly to her, and stroked the top of her head. A few rooms away, another mother lay motionless in bed surrounded by her husband and four children. All four children sat close to the bed and each adult child was connected and focused on a device. The husband sat alone in a corner staring at his wife in silence. Occasionally one or two of the children would walk out of the room into the hallway sometimes crying, or grabbing a cup of coffee or cookie. When they returned to their mother’s room they returned to their device.Life is what happens.jpg

There have been articles written about ‘unplugging’ and being mindful or present in the moment. It sounds so simple but it is not so easy, especially when sitting vigil bedside. Denial and distraction are easy to find while focused on a device.

Finding a balance between when to connect and when to disconnect can make the difference between allowing something meaningful to immerge and missing a significant moment, perhaps the last one your will share or witness with your loved one.

Being present means asking yourself: ‘Where is my mind?’ When you say ‘goodbye’ and ‘I love you’ are you truly saying goodbye or are you worrying about life without them in that moment? In other words, in order to have the best experience in the moment, you need to be aware. You don’t want to miss out on a look in your mother’s eye while looking at a screen, or miss you father’s last mouthed: I love you when he has no breath left to utter the words. The daughter who was sitting present at bedside called the staff several times asking about changes in the breathing pattern or movement of the mouth. This daughter, somewhat anxious, kept wondering “is this it?”

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Focus on the important stuff happening around you.

When the woman with the four children took her last breath it was the husband who came looking for a nurse. I went to the room with my stethoscope and confirmed there was no heart beat or respirations; the children began to cry. I asked the family the time of death because for many families that is important. So when I asked the question, one son looked at his watch and stated the current time. The husband who was the only person in the room focused on his wife stated a time four minutes earlier; He had been truly present. That is the time documented. He went on to say how peaceful her death was and how grateful he was to ‘be with her, we’ve been together for 61 years.’

When the daughter in the other room called for a nurse to confirm that her ‘mother had passed,’ she looked at me and said ‘She took a breath like this’,

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as she demonstrated a shallow breath through the mouth ‘and that was it.’

I doubt the four children were aware of their mother’s last breath since it was their father who brought it to their attention. What was clear as an observer, the daughter and husband were sad but more at peace than the four ‘plugged in’ children at the time of their mother’s death. Whether it is because they missed her last breath or not I will never know. I would never ask. Perhaps they wouldn’t know even if I did. But I’ve seen over the years that being connected, truly present in the moment, however difficult, can lead to compassion, and often, a sense of peace.

 

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That’s Not Uncommon Either

authors_sue_150
Sue Collins

by

Sue Collins

I was sitting in a booth with my husband and granddaughter having breakfast when I overheard a discussion between a father and his two adult daughters in the next booth.

“Joe and the girls went to the hospital last night and said their goodbyes. They felt bad leaving him there,” said one the daughters.

“It’s not uncommon for people to die alone,” said the father.

“His birthday is only a few days away.”

“That’s not uncommon either that people die on their birthday.”

I don’t know what life experiences this man has had but he was correct in both statements. I had said almost the same thing to the daughters of two different patients I took care of during the Big Snowstorm this winter. One patient had just been transported from the hospital to the hospice center. Her daughter, who had been at the hospital, had gotten a ride back home with her young children. After settling the woman into her bed, I phoned the daughter to let her know that her mother’s condition looked guarded, though honestly, I did not think her mother would last through the night. I believe the daughter understood what I was not saying.

“I don’t drive and the snow is really coming down,” the daughter told me tearfully. “I don’t know what to do. I wished they left her in the hospital.”

I asked whether her mother was private about her personal affairs or a person who shares everything.

“Private” the daughter replied.

Sitting at the bedside 24/7 does not guarantee your loved one will not be alone at the moment of death. Why? Because regardless of how bad the American culture feels when someone dies alone, my experience as a hospice nurse has taught me that sometimes a person prefers to be alone. Many patients die only after family members leave the bedside. This seemed to resonate with the daughter.

“People die the way they live,” I told her.

“Right! She would not die in front of me,” the daughter said, clearly calming down. “Now I’m glad they moved her out of the hospital and that she is with hospice people”.

Her mother died three hours after she arrived.

The second daughter sat at her father’s bedside, struggling with her decision to leave him and go home to her family before the snow made it too difficult to drive.

“His birthday is in two days, but I don’t think he will make it,” she told me when I came in to check on them. “I feel really bad leaving him.”

He was in a deep coma like state not responding at all to her presence. To be or not to be at the bedside was the question these two daughters struggled to find an answer to that they could live with, both torn between duty to family and children or to a dying parent. In the hospice community we believe hearing is one of one of the last senses to go; we have seen evidence.

“Tell him the truth,” I suggested. “There is a blizzard starting and you need to go home.”

As she told her father his eyelids flickered as if he was trying to open his eyes. This man had not responded at all even to repositioning. Upon witnessing this I recommended to the daughter to take this as a yes response. I did not realize how tense she was until I saw her shoulders and face relax at my suggestion of his reaction to her words. The daughter returned to the center two days later in time to witness the death of her father on his birthday. And that is not uncommon either.