The diagnosis of dementia should not be a carte blanche label to remove all decision-making capabilities. Symptoms wax and wane throughout the day. The condition progresses differently in different people. Yet many healthcare workers treat the diagnosis as an absolute indicator that patients cannot make many or all of their decisions.
A Vietnam Veteran who served in the Air Force sits in a secure nursing facility to keep him from wandering in the evening. Like most Vietnam Veterans, "Mr. Jay" married a few times throughout the decades after surviving Vietnam and returning to the States. His current wife estranged herself from him within two years of marriage in 2016 for reasons that only she understands. She's not motivated to divorce; which begs the question, what incentive does she have for staying married?
She, "Frannie," asserts her power as the default surrogate medical decision-maker for his care per local state law. A few months ago, she agreed to sign paperwork to waive her surrogate proxy rights since she no longer knows or visits Mr. Jay. His family was more than prepared to take over since they had been managing all of Mr. Jay's affairs since Frannie moved out of their apartment and left him.
He was weak and confused by improper peritoneal dialysis that was supposed to be administered by Frannie, a registered nurse. In a uremic state, he was unable to call for help. Lucky for him, he has family that notices if he's absent for a day. They looked for him and broke into the couple's apartment where he was sleeping on the floor in barren surroundings and no working utilities.
A conflict between estranged wife and individual family members continues to boil two years later. At the center of the storm is a man who served his country by risking his life (not by choice). His experiences forever changed his life's trajectory with exposure to Agent Orange and a brain rewired by traumatic stress. Many may consider Mr. Jay "lucky" for surpassing the average Vietnam Veteran lifespan of 65 and having family that continues to oversee his welfare.
The problem now is that Frannie has extended her medical decision-making proxy role to include social decisions as well. She dictates who can visit and call Mr. Jay. Recently, Mr. Jay stated during a discussion about end-of-life-wishes and values that "No," he would not want to be resuscitated if he were to be in a state that he couldn't recognize family and friends. He stated, "that wouldn't be much of a life, would it?"
What kind of life is he living when his legal surrogate medical decision maker does not allow him to have visits from friends and family that he values? Who has given her the authority to decide what visitors and calls he receives? Unless Frannie can present compelling evidence that visits and calls from friends and family would cause irreparable harm to Mr. Jay, then she is abusing her position as the default surrogate medical decision-maker.
Mr. Jay does not have decades of life ahead of him. Doesn't a Vietnam Veteran deserve to have at least some portion of life without constant conflict? Human beings with dementia still have rights and some decision-making capacity. When did healthcare workers conclude that dementia = absolute incompetence? How can administrative leaders enable such gross interpretation of a man's safety, rights, and law? When did authorities interpret medical decision-making to encompass social visitors? Mr. Jay's current care contradicts research studies that show nursing home residents thrive at higher rates with regular visits from friends and families.
Mr. Jay is just one of the many now senior Vietnam Veterans highly dependent upon our healthcare system to make it through the winter season of life with comfort and dignity. These are the Chronicles of Vietnam Seniors, a series of real stories shedding light on the fact that 60s/70s-era veterans remain disrespected.