A wife's hardships while caring for husband with early-onset dementia

"I have a bad brain," he told everyone repeatedly, using a simple phrase to explain his diagnosis to the world.

Two years before that, his wife, Diana Daniels, had asked for an MRI because she was suspicious that things weren't right and fearful when he couldn't remember the word "shoelaces." The scan showed with horrific clarity how sections of his brain had shriveled.

"The devastation began on his left temporal lobe, working its greatest damage," says Diana. "By the time of diagnosis, his right temporal lobe also had significant atrophy."

David was diagnosed with frontotemporal dementia, or FTD, part of a group of disorders caused by nerve cell damage to the brain.

The disease comes with a dispiriting prognosis. There is no cure (although symptoms can be treated), and patients usually die within seven to 13 years from the onset of symptoms. As FTD progresses, behavior can become strange and antisocial, says Matt Ozga, communications manager at the Association for Frontotemporal Degeneration in King of Prussia, Pennsylvania. Patients lose their filter and can make embarrassing remarks.

For the spouses who are caught off guard, thinking their mate's worst setback for the next few decades will be graying hair and a paunch, it's a shock. The couple may find themselves confronted  by different challenges than those who encounter dementia later in life.

Diana's efforts to care for her husband as he steadily deteriorated would come close to destroying her.

"Frontotemporal Dementia is an umbrella term for several different brain disorders," Ozga says. David's disorder is the semantic variant, which affects language.

"You might be unable to form words or even understand them," Ozga says. "FTD also affects your behavior. ... Often, spouses say inappropriate things at the workplace and wind up losing their job, and the spouse says, 'This is not who I married.' "

This kind of early onset dementia affects 50,000 to 60,000 Americans at any one time, according to the association. "We believe that's a significant undercount," Ozga says. "FTD is so little known by health professionals and is often misdiagnosed as depression or schizophrenia. ... People don't look at someone in their twenties or thirties and think dementia."

The illness comes with unusual challenges for a health-care system more accustomed to dealing with elderly dementia patients. For older people with Alzheimer's, Ozga says, supportive infrastructure exists: nursing homes have staff trained to help.

 But with people who experience dementia at a younger age, "staff oftentimes don't know what to do with them. They tend to be bigger and stronger and trickier to deal with," he says.

A person with FTD often thinks all is normal and fine. "They don't know they're hurting their loved ones," Ozga says. Moreover, a young spouse may be in the heyday of a career and unprepared to drop everything to become a caretaker.

That summer in 2014, Diana was already grappling with how to care for an increasingly erratic husband. One day David had struck up a friendly game at the community pool, throwing a ball back and forth with a man playing with his kids in the shallow end. The sweet scene of normalcy was interrupted when David started barking at the man like a dog. Diana grimly swam to the other end to tell the man about David's condition.

That was also the summer that David adopted the persona of a Spanish clown he called El Payaso. Diana was always on edge, scared he would be physically attacked because he would violate others' personal space with inappropriate behavior.

 "He'd come up to people who were African American and say, 'Are you Michelle Obama? Are you Barack Obama?' You can't distinguish between dementia behaviors and mental illness - and mental illness scares people," she says. "You never know if someone's going to have a fight-or-flight response or equanimity. We encountered all three, constantly."

David had taught art at California State University at Sacramento since 1999, but he was saying unpredictable things to students and took an early retirement. He also let a lectureship at Sierra College lapse.

He was a visual artist whose abstract, geometric, large-scale paintings had attracted Diana's attention before she knew him. When they met in 2001, she was a curator at Sacramento's Crocker Art Museum, where two of his pieces are in the permanent collection.

She included one in a gallery she was assigned to reinstall. "I was so smitten with it," she says. Months later, she was introduced to the artist, had a great conversation, and - uncharacteristically - gave him her phone number.

In March 2010, they married, but even on their wedding day Diana noticed what in retrospect were warning signs. 

"He was absent in his eyes when we were setting things up for the ceremony. He seemed slow on the uptake and clingy in a childlike way," she says.

In increments, David's life as an artist closed down. He emptied out his studio in an artist's collective but kept working in his garage. By January 2019, he had given up completely. 

"When he stopped painting, that's when he wasn't really there anymore," Diana says.

As 2019 drew to a close, the years of ad hoc, untrained caretaking were imposing nearly unbearable strains on Diana. David had stopped talking and turned to food instead of words to fill his mouth. He would eat endlessly, including from the cat bowl. Diana had to lock away food, and subsequently lost 15 pounds while her husband gained weight from his hyperorality.

Incontinence plagued him. "Poop has adhesive qualities I can't believe 3M hasn't researched and mastered," she says ruefully. To get a few hours away now and then, she hired a caretaker to watch him like a babysitter.

Diana had to quit her job in July 2016 to care for David. 

"Everyone thinks dementia is just that you don't remember stuff, but it's irrational behavior and impulses and drive," she says, pointing out that even if people are trying to be supportive, they may not completely understand.

"They see you getting special treatment. ... The day before I quit, a co-worker said something to the effect of, 'I'd sure love to come in late because my kid was sick. I need to spend time with my family, too.' Your children, knock on wood, will grow up and be healthy. My husband was rapidly slipping away, day by day."

While many may feel compassion for an elderly couple beset by dementia, sympathy is not always extended when the patient appears to be a healthy, middle-aged man.

 "Caretaking is one of the hardest things someone can do, especially if young," says Bruce L. Miller, David's doctor and director at University of California at San Francisco's Memory and Aging Center. "It's one of the most unique burdens someone can face. Diana was an amazing partner to David and supported him far longer than most would have."

In October, Diana applied for a grant to pay for David to spend up to 13 days in a respite facility. But he refused to get into the car to go for the required tuberculosis test, and Diana, wearing a wristguard on a wrist she worried was broken by David's resisting her efforts to wash him, says she resorted to "yelling and screaming like a drill sergeant."

David vomited in the car - he had had his gallbladder removed a month earlier - and at the general practitioner's office, the offer to help clean him led to chaos. Forty minutes later, Diana and three trained professionals had failed to accomplish the task, as he writhed and fought them. 

"I realized I can't do this anymore," she says. "I essentially had a breakdown and said, 'I can't take him home with me.'"

David was transported to an emergency room where the hospital refused to admit him despite a CT scan showing a partial bowel obstruction. When Diana asked in despair what would happen if she simply left, she was threatened with arrest, she says. It took six people to get David off the gurney and into her car.

The next day, she faced the task of getting David back into the car for the respite assessment. Once again, she says, he grabbed the door frame to brace himself from going outside. As a 106-pound woman, she was kicking her nearly 200-pound husband in the small of his back to get him out the door, which worked - but then, he held on to the frame of the car.

 "I was pushing him and calling him names out of complete exhaustion," she says. "I was never as desperate in my life as I was in that moment."

In her fury, she became aware of people on the sidewalk watching. They weren't just passersby; they were Adult Protective Services agents who had been called by an employee at the emergency room the day before. Back inside the house, the agents advised her to call In-Home Supportive Services. When she got an automated phone tree, she says, "I broke down at the futility of it all. I couldn't function for myself or David. There were no emotional or physical reserves left."

She recalls David sitting watching television, eating Apple Jacks one by one like a toddler, as she threw a potted succulent on the floor out of overwhelming frustration - and made threats to harm him and herself.

"I didn't see him as human anymore," she says. "I was on the verge of a psychotic break. I'd had no sleep, no food. Everything was covered in feces and urine, everything. The mattress was soaked, and I was trying to sleep on the floor. I'm not fragile, but conditions got so bad. You're reduced to being an animal."

The APS agents called the police, and when an officer arrived, he summoned the fire department to remove David from the home. David was transported to a different hospital, where he spent 16 days in the ER for lack of another alternative.

He was then transferred to a home-care facility an hour from Sacramento, a situation that was supposed to last two months, but he is still there after nearly four months. David's insurance covered three months of the stay, but Diana says it is a "mystery to me" how the bills will be paid. 

"It could be his family," she says. "Or no one could be paying. Apparently, once you are in a facility, they can't just kick you out. ... It is very confusing but totally symptomatic of how messed up our health-care system is and how poor the safety net."

Diana had applied for his Medi-Cal (California's version of Medicaid) placement elsewhere, but she was turned down because of an overlooked asset - David had $6,000 in a  retirement plan and the cutoff is $2,000. For perspective, Diana believes the home-care facility charges $8,500 to $9,000 a month. She has not yet reapplied because David's brother is now pursuing a conservatorship.  

She and David had not qualified for in-house services. "No one believes us when we say we have no assets. David was an artist and I was an art historian; he was in trouble with the IRS for back taxes when I first met him," she says. "You have to be absolutely destitute to qualify. So if you're middle class, you're screwed."

After David's removal from the home, Diana held a "fire sale" of his work at Kondos Gallery in Sacramento. With rents so high, Diana plans to vacate their townhouse and move into a studio apartment where she won't have room to store his work.

 His large canvases and paintings on wood rested on the floor, propped against the walls, as serious buying ensued. In a few hours, 19 pieces sold; by day's end only four remained. "I want the paintings to have a good home," said Diana at the sale. "It would break my heart to take it all to the county dump."

Each painting for sale that day shared a similar color gradation but distinct from the others - like a fractal (a never-ending pattern), Diana says. His work had begun to change even before they knew anything was wrong with him. "He developed a color pattern system that he used relentlessly," she says.

"His work was always great, but it became even more interesting and mystical and wilder after the diagnosis," Miller, his doctor, says. "It was almost like a science-fiction writer telling a visual story about other worlds, other peoples."

Diana and Suzanne Adan, co-director and curator of the gallery, reminisced that day about David and a friendly get-together in the early days of his diagnosis. "I think that was the party where they said, 'Your husband's playing in the street,' " Diana said.

As she waits for David's eventual placement, she is beginning to think about her own future. Her path back to work is uncharted, her unique job as a curator in an art museum unrecoverable. "It's not like I'm an accountant and can just post something on LinkedIn," she says.

Overall, sadness clogs the wheels. In a cruel coincidence, Diana had watched her stepfather go through FTD and die of the disease.

In 2012, Diana told friends she expected to be a widow in three years. Eight years later, she is not officially a widow. Yet the man she married, the artist whose work so moved her, isn't there anymore.