Kevin's story is a reminder that even when memory fades, dignity, personhood, and connection remain.
How do you help someone who can no longer advocate for themselves and who has been failed by the people meant to care for them? This is how PGS Care Manager Madeline Feist came to know her client, Kevin.
Among PGS’s earliest cases, Kevin was a Korean War Navy veteran who had worked for American Airlines for much of his life. He was living in the family home where his late wife had been born and raised, and after her death in 2019, had remained there in the care of two of his sons.
By then, Kevin was battling severe dementia, and concerns around elder abuse and neglect had been mounting. The conditions inside the home were alarming. Reports described unkempt living conditions and bedbug infestations so severe that Kevin and his wife had required treatment at Massachusetts General Hospital. There also were signs of bullying by the sons, and evidence that they were living off rental income of the property that belonged to Kevin.
When Madeline and another PGS Care Manager visited Kevin and his sons in the home, one of the sons became aggressive and confrontational, even with a police officer present. That was enough for Madeline. In cooperation with Ethos, the local Aging Services Access Point agency, PGS obtained court permission and moved Kevin to Blaire House, a small nursing facility specializing in dementia care. For the first time in years, he was surrounded by a team of people who were trained to care about his well-being.
While much of Kevin’s story was marked by hardship, Madeline recognized that he had overcome many barriers during his adult life. “I was told he was a character, a very powerful person,” she says. “He used to drive around in a burgundy Cadillac. I would’ve loved to see that person.”
“He had two full-time jobs the whole time the kids were growing up. The kids grew up with their own issues and difficulties, but he did the best he could.”
His cognitive decline had brought out a different part of his personality, someone capable of simple warmth. “He was a sweet man,” she says. “He loved to sing.” His boisterous voice could be heard echoing through the halls of the nursing home as he sang for the staff and fellow residents.
But dementia had taken much from him. “He never seemed at peace,” Madeline recalls. “It was always some sort of internal struggle.”
Many of their conversations followed a familiar pattern. Kevin would go on tangents about arguments or people who had wronged him. “You couldn’t have a conversation beyond, ‘How are you?’ ‘I’m good,” Madeline says. “And then he would go into a tirade about someone that wasn’t there and that I didn’t know.”
When working with clients who have advanced dementia, Madeline learned that it requires a different approach in order to have a positive interaction. Rather than trying to force Kevin toward a particular outcome or response, Madeline focused on meeting him wherever he was that day.
Sometimes that meant holding his hand when he was upset. Sometimes it simply meant sitting beside him when he confused Madeline for his late wife and said that he loved her. Rather than correcting him, Madeline focused on comforting him in the moment.
She remembers another time when Kevin seemed mentally transported back to the war, speaking about someone who had killed fourteen people in front of him. Rather than dismissing his fear, she would reassure him that he was safe now. He wasn’t there anymore.
Other times, advocacy was about paying attention to the signs and details. When Kevin started coughing more frequently, Madeline brought her concerns to the care team’s attention so he could receive treatment for his compromised lungs. If he was cold, confused, or upset, she would hold his hand and try to understand what was causing the distress.
“With dementia, you can’t be ahead of them. You have to be with them in whatever world they’re in,” Madeline says.
Despite good medical care, Kevin eventually developed aspiration pneumonia shortly after his 91st birthday. What followed was a series of difficult medical and housing decisions as his health rapidly declined.
Madeline and his care team monitored his condition. She advocated for his comfort, and as his health worsened, she reassured him that his family and home were being looked after. She told him he’d see his wife again. He passed peacefully on hospice at the Blaire House with a team on his side.
At his funeral service, a flag was presented and taps were played in recognition of Kevin’s military service. Madeline and PGS Director Peter Macy were in attendance, along with two of his three surviving children.
A few days later, members of Kevin’s healthcare team presented Madeline with a book that was signed by a dozen staff members from Blaire house, offering best wishes, messages, short poems and reflections, and thanking her for her involvement in his care. The pleasure that this gift brings to Madeline is not just about being recognized, but about knowing that her commitment as a compassionate guardian for Kevin had had such a positive impact on the staff who cared for him.
Kevin had never been able to learn Madeline’s name or to know why she visited him; it’s likely that he had had the same disconnect with the staff who served him every day. But she had helped them to see the person inside of the diminished personality that remained of this once-colorful person.
Madeline takes a moment. “You have to honor the person regardless of the circumstances. And there was a lot to honor with him.”