On day one, Jordan Wilson Sanders answered an urgent call from her father’s boss.
After 30 years doing electrical work on barges, her father’s work had become shoddy.
In the days that followed, her 55-year-old father, Steve Wilson, would be diagnosed with early-onset Alzheimer’s disease.
In her journal, Sanders would document 2,000 days of caring for him as he slowly became a ghost of himself and then died.
“He is the body of a disease that stole my father a long time ago!” she wrote on day 1,233 in her diary. “I have to think back on the father that I want to remember.”
After her father’s death, Sanders, 36, published the journal as “Days with my Father’s Ghost!” She wanted to share her story to educate others on the realities of dementia and share her story as a caregiver.
Alzheimer’s is misunderstood by many, she said. It’s more than just a memory problem.
Her father, once a sweet, gentle hippie nicknamed “Mellow,” was transformed into an angry, occasionally violent man, whom she refers to as a “ghost.”
“I had no idea about the anger,” Sanders said. “I refer to him as his ghost because there was a lot of violence, a lot of anger. He was not who he had been before.”
About 5 percent of Alzheimer’s patients develop the disease before age 65, like Steve Wilson did. They form a subset called “early-onset Alzheimer’s,” according to the Mayo Clinic. More than 4 million Americans have Alzheimer’s disease, and about 200,000 of them are early-onset.
Their symptoms do not evolve faster than typical Alzheimer’s sufferers, and they often live eight to 10 years after diagnosis, just like most older people with the disease, according to the Alzheimer’s Foundation of America.
Steve Wilson grew up outside Chicago, and traveled the world, attending college in South Africa for two years before hitchhiking across Europe and the United States. Wilson stopped traveling when he met his wife in Louisiana. They settled down to live a country life in Rosedale, near her family.
After her mother died of cancer, Sanders noticed her father seemed different. When she was 25, she moved in with him after getting divorced, and she noticed he was often frustrated with normal tasks, like hammering a nail into a wall.
Everyone assumed he was depressed. Then Wilson’s boss called. He was in danger of losing his job.
Doctors doubted he had dementia — he was so young — and depression seemed a likely cause.
But the symptoms mounted, and doctors diagnosed him with moderate-to-severe Alzheimer’s at 55.
An only child, Sanders became her father’s sole caregiver. At first he was forgetful and frustrated.
“He knew he wanted to pick up a pen, but his mind and his body would not work together so he could pick up a pen,” she said. “Or he wanted to say a certain word, but his mind wouldn’t work where he could say it, and he would be frustrated and angry.”
After 1,000 days, she saw he was no longer the same man.
“He has to be a stranger to me now,” she wrote on day 1,233.
Eventually, Steve Wilson had to go into a nursing home because Sanders couldn’t restrain him during outbursts. He reacted badly to anti-psychotic medications, and in a hospital on day 1,399, Sanders was attacked.
He shoved Sanders against a wall and demanded she take him home. But once a hospital orderly freed her, and she fled from the room, Sanders realized she couldn’t run away.
“If I were in that room, he would be there for more,” she thought. “So I had to do it. I had to find the courage to go back in there and face his ghost again.”
Throughout the journal, Sanders writes about the guilt she felt as a caretaker. She wanted her life to go back to normal, but that would only happen after her father died.
“Nobody really talks about this … just feeling like it’s never going to end, but feeling guilty because you want it to end,” she said. “So many people have thanked me for admitting that.”
There were good times when the light returned to his eyes or he remembered good memories, and Sanders enjoyed those brief moments.
Wilson died at 61, six years after his diagnosis with Alzheimer’s. And Sanders thanked the “ghost” in her journal.
“For a long time, I was scared when he got violent and mean and I was mad and angry,” she said. “In the end, I realized it scared me into finding the courage I didn’t know I had.”
Now, three years after her father’s death, Sanders lives in the family house. Every day she remembers her father and his ghost.