National Book Award author Jonathan Kozol, best known for his work on injustice and education, speaks out about his father’s fight with dementia and why he decided to bring him home for care.
In his new memoir, “The Theft of Memory: Losing My Father One Day at a Time,” Kozol speaks out about how he never stopped seeing his father through the dementia and how his respect and love for his father only deepened as he became a dedicated caregiver.
Read more about Jonathan’s caregiving experience and be inspired by his faithful love, genuine devotion and determination to see his father’s intelligence and gentle spirit despite a dementia diagnosis.
A Son’s Devotion While Losing His Father to Dementia
Jonathan Kozol’s father, Harry Kozol, was a renowned neurologist and psychiatrist in Boston prior to his Alzheimer’s disease diagnosis. In 1992 at the age of 86, Harry Kozol set his son down to tell him that he had diagnosed himself with early symptoms of Alzheimer’s.
Jonathan remembers being impressed that his father could describe and diagnose his own symptoms but was also frightened of the future. Two years later, Harry Kozol received the official diagnosis from another doctor and two years following the diagnosis, he moved into a nursing home.
After his diagnosis, Jonathan made an effort to remain close to his father and spent hours visiting him in the nursing home. He said he wanted to avoid “phony talk” at all costs, believing that his father was intelligent, even with his dementia, and that kind of talk would be insulting. As a result, his father was responsive, became more tender as their relationship grew.
Four or five years after his move into the nursing home, Harry began asking Jonathan to take him home with him. Jonathan believed that his father felt imprisoned and decided to take him home saying:
“A lot of people said I should dismiss his questions. “Your father has Alzheimer’s,” they said. “This is a product of his dementia.” But he said it so often and so earnestly and so wistfully that I decided I should take him at his word.”
Caring for a Parent with Dementia at Home
Jonathan brought his father home, where he resided with Harry and his wife Ruth,who lived for the next four years, until Ruth passed. Harry went on to live in his apartment for two more years until he passed at the age of 102.
Jonathan believe that bringing his dad home brought him joy. He believes that allowing his dad to be in his own environment and in his home office, brought him great pride. Jonathan credits his father’s success at home to wonderful caregivers and acknowledges that this is not always the case, saying:
“There were other helpers at first who were not ideal. But I was fortunate. Among all the people who came and went in the early years, I was able to pick out the ones who I could see related best to my father and mother and who I myself enjoyed talking with. Just by the process of elimination and good fortune, I found wonderful people. I was very blessed.”
He also admits the cost of his father being at home came to about $200,000 per year. His parents were close to 100 years old and had spent their savings so Jonathan was covering many of the costs. Realizing that many families can not afford that kind of care, Jonathan says:
“The only answer I could give was that (this kind of care) is very expensive and a civilized society would make it possible for every family. I don’t think our nation will truly be civilized until we treat the elderly and those who have dementia with every bit of the same respect that we treat one another, our peers and our children.”