Unique FTD Caregiving Story Detailed in “Atavist” Article

Unique FTD Caregiving Story Detailed in “Atavist” Article

The story of a literature professor who received FTD care in his last years from a previously incarcerated person he had befriended while co-running a prison arts program was recently recounted in the Atavist, an online publication focused on long-form journalism.

The professor, Buzz Alexander, co-founded the University of Michigan’s Prison Creative Arts Project (PCAP) with his partner and colleague Janie Paul. In 1996, PCAP held its first exhibition of art entirely created by incarcerated people in Michigan, including two pieces by Danny Valentine, then just six years into a 20-to-30-year sentence.

Valentine stayed in touch with the couple, and after being released on parole in 2013, he contacted them to meet in person. But that same year, Alexander began experiencing his first FTD symptoms.

“Always a careful listener and conversationalist, Buzz now occasionally fell out of step when talking to people,” writes the Atavist’s Kelly Loudenberg. “He didn’t always answer questions—it was as if he hadn’t heard them or couldn’t understand—and sometimes his replies were totally off topic.

“Janie wondered if Buzz might be in the early stages of Alzheimer’s disease, yet his memory seemed fine,” Loudenberg continued. Alexander was first diagnosed with mild cognitive impairment, and then Alzheimer’s, before receiving his FTD diagnosis.

Struggling to provide care herself, Paul reached out to Valentine in late 2016 to see if he would be willing to move into the house she and Alexander shared and become Alexander’s caregiver. “I got the feeling that he was a person who took great care and was thorough and patient,” Paul told Loudenberg. “I had the idea that he might be a good caregiver.”

The article details Alexander’s FTD symptoms, and the ways that Valentine had to adapt his caregiving approach as those symptoms evolved; for example, when showers became too overwhelming for Alexander, Valentine began to clean him using a sponge bath.

Valentine provided care for Alexander for three years before Alexander’s death, in 2019. “I wish him back every day,” Valentine told Loudenberg.

Click here to read the Atavist article “The Caregivers.”

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