By Rebecca Gagne-Henderson PhD APRN ACHPN
Over the years of caring for dying patients, it bothers me when I can remember a patient’s face in my mind’s eye but cannot recall their name. I have a physician friend who, since the beginning of his practice of 40 years has a series of notebooks where he has recorded the name of each patient who died in his care. I wish I had thought to do that. There are some patients and families I will never forget. I am going to share one of my favorite hospice stories with you now.
Louie was my patient. He lived in a dementia facility that allowed residents to walk freely. Louie was in the latter part of his 8th decade as well as the latter stages of dementia. Louie was able to shuffle with the assistance of an aide. As he shuffled, he would grunt in a pleasant tenor. This was his only vocalization.
Louie had a twin. They had come to live in Brooklyn NY from Italy when they were five years old. As is frequent with identical twins, the pair were inseparable. Louie’s brother’s name was Tony.
At some point, Louie began to die. I was called to attend to him. When I arrived, the room was filled with his adult children and grandchildren. There were also nieces and nephews. At least 12 people were surrounding Louie’s deathbed. Louie was obtunded, unresponsive and had begun open-mouthed breathing. Many of the family members were weeping. It appeared that Louie would have a typical uneventful natural death.
Then, Louie’s brother Tony arrived being transported by his daughter from the car in a wheelchair. She wheeled Tony close to the bedside. Tony was extremely frail and had temporal wasting. He was disheveled. He called to his brother, “Louie, Louie! It’s me. It’s your brother Tony”. There were tears in Tony’s eyes.
Tony continued to speak. “Remember how we used to play stickball in the street with the other boys? Remember the time we broke the store window and ran to hide?” Suddenly, Louie began to grunt as if to say yes. His eyes still closed; Louie responded to Tony. I watched in disbelief. Here he was, a man actively dying with advanced dementia responding to another person in what seemed to be a meaningful way.
Tony went on “Remember the night at the dance? Remember, that’s when we met the girls.” You see, Louie and Tony met their wives on the same night at that very dance. Louie grunted, opened his eyes and was attempting to sit up. His son and grandson positioned Louie and he now sat at the edge of the bed.
Tony said, “And remember that song that we would sing?” At this point, Tony took his brother’s hands and began to sing to his brother, an Italian song. The family joined in singing in Italian. Then Tony stood from his wheelchair and lifted his brother to his feet…and they began to dance. Not well, but they danced. Their family members sang, clapped the rhythm and wept. The song ended, Tony sat his brother back down on the edge of the bed and kissed Louie hard on the lips. He then sat down in the wheelchair crying and his daughter wheeled him back out to the car.
I went to the kitchen to get Louie’s favorite strawberry ice cream. His daughter fed him one small spoon and Louie laid back down. He died within 20 minutes. It was magnificent.
The thing is that everyone is always asking for a miracle. Since that experience when a family member or patient tells me that they are waiting for a miracle, I always tell them, “You never know what your miracle is going to look like.”
I think sometimes we get distracted and can miss our miracles. There have been many times in the hospital when rather than speaking to a dying patient the family becomes riveted to watching monitors. I always attempt to have them allow me to turn off the monitors, but some resist and insist that they be left on.
Unfortunately, being fully present at our loved one’s death can be difficult. Presence is a gift to the patient and family. We need to discuss presence during death before the patient begins to actively die. This may help some families experience their miracle.
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