Dementia, Psychosis, and the Lonely Spouse
Memory loss is cruel enough—but hallucinations and delusions can turn an ailing spouse against a loving and loyal caregiver.
May Ho said that she and her husband, Edward Neil McCool, Jr., had a loving relationship during the course of their 26-year marriage. “He always packed my lunch bag for me to go to work and would leave sweet notes,” she says. And he’d lavish her with flowers and gifts on her birthday. “I was spoiled silly by him.” McCool, Jr., who died in December, also bought a house for them to live in Gulfport, FL, to spend their twilight years together. But in 2017 he started forgetting holidays and birthdays. He was a smoker and often left lit cigarettes everywhere, which made Ho nervous. She finally took her husband to see a neurologist, who broke the devastating news: He had unspecified severe dementia.
After receiving this diagnosis, McCool, Jr., began exhibiting other types of disturbing behavior. “He would speak to people he saw in his mind,” she recalls, doing things like handing the television remote control to an imaginary friend, or talking to folks he saw in the toilet bowl. She went along with it and learned to live in what she refers to as his “Alice in Wonderland world.” It wasn’t easy. “It was kind of a nightmare,” she admits. “But I didn’t have a choice.”
Roughly five million Americans are living with dementia, according to the Centers for Disease Control and Prevention (CDC). McCool, Jr., was among the 90% of dementia patients who experience behavioral and psychotic symptoms, or BPSD, as estimated by the Alzheimer’s Association.
Dementia-related psychosis is characterized by delusions and hallucinations, explains Brent Forester, M.D., chief of the Division of Geriatric Psychiatry at McLean Hospital in Belmont, MA, and an associate professor of psychiatry at Harvard Medical School. Hallucinations typically cause someone to see things like people, children, or animals that aren’t there, while delusions are falsely held beliefs that include paranoia, he says.
Being a caregiver for a spouse under any circumstances can be challenging. But caring for someone who experiences psychotic episodes takes a particularly painful toll. “The burden from psychosis is profound on families and caregivers,” says Dr. Forester.
To understand their journeys, it’s important to consider what spouses and partners go through: anguished confusion before diagnosis, loss of companionship and support, dread of what’s to come, and exhaustion from giving everything to a partner who is no longer fully “there.”
A Partner Who Is Suddenly a Stranger
Cynthia Kent and her 68-year-old husband, Don, who live in Tyler, TX, have been married 45 years. They met on the debate team at Baylor University—the beginning of a shared and long-lasting passion for the law. He went on to become a medical malpractice insurance defense attorney, she a district court judge. The parents of three sons, “we had a wonderful life,” she says now.
In 2015, Kent began noticing acute behavioral issues—her husband was acting both paranoid and delusional. Always a “vibrant, intelligent, solid, salt-of-the-earth good person,” he was suddenly easy to anger and often yelled at others, she recalls, which still makes her “sad” to consider. After enjoying an intellectual, mutually respectful relationship with her spouse for decades, she didn’t know what to think—or feel, other than terribly hurt. “All of a sudden, it was like his mind was just not working properly,” she says. “It didn’t make sense.”
Don also became convinced she was having an affair. He followed Kent to court, to the bathroom, and even to the dentist when she was being treated. His worry seemed to be triggered by Facebook, so she closed her account. That did the trick.
Finding the cause of your loved one’s delusions so you eliminate it can be helpful, says David Reuben, M.D., a geriatrician and director of the UCLA Alzheimer’s and Dementia Care Program in Los Angeles, CA. “If Facebook is the trigger, getting off may be all that you need.” Though Kent has sacrificed seeing photos of her grandchildren as of late, she says it’s been a small price to pay for ridding her husband of his anxiety.
After seeing seven different neurologists, Don was diagnosed in 2017 with Lewy Body dementia, a type of dementia where three-quarters of patients experience hallucinations. While this was upsetting, even shocking news, Don’s marked change in behavior finally made sense.
Lonely and Disappointed But Still Bound
Ian Tait, who lives in China Grove, NC, has spent more than three years caring for his wife, Cynthia, 62, who was diagnosed with frontal lobe dementia, and who has experienced delusionary thinking. Tait, 55, recounts her saying nonsensical things like, “Little girls come into the house, and the man behind us had pooped in her pants.” She can no longer distinguish between such musings and reality, her husband believes.
As a result, Tait now speaks of his spouse and their marriage in the past tense—yet she’s still alive, and they still share a home. Married for 21 years, he offers the following frank admission: “She’s no longer the vibrant woman I married... I love her, but most days I don’t like her. This is not the person I would have chosen to spend my golden years with.”
Balancing working from home for a computer software company while caring for his wife has been extremely challenging. Dementia, he says, “is a cruel disease that kills the soul of the loved one and destroys the life of the caregiver.” What’s more, he misses his wife—the companion he once cherished. “When something fun happens, who do you tell? You tell your best friend, and my best friend was my wife... So when you don’t have that, that’s absolutely ripped apart.” His friends have also backed off. One told him that it was too painful to see Tait’s wife because his father had dementia, and he didn’t want to deal with it. “Losing your friends, your community, your family dropping away... all of that stuff leads to mind-crushing loneliness,” Tait admits.
He says he eventually found a sense of community through Facebook groups, specifically the Alzheimer’s and Dementia Caregivers Support group, which has 53,000 members, where he can post his query and get immediate responses from strangers who are walking the same walk. “It’s incredibly isolating,” Tait says of the caregiving experience, “but when you mention a problem and those in the support group say, ‘this happens all the time,” it provides a sense of community. It prepares you for it.”
In addition to paranoid thinking, Kent’s husband Don frequently experiences the visual hallucinations that are common with Lewy Body dementia. He even took to talking to (and petting) the family dog that had died five years earlier. She saw the value in validating his harmless visions with small fibs, a tactic she later learned is a smart approach for dealing with nonthreatening psychotic displays. Telling him the dog wasn’t there would merely frustrate him, after all.
“You cannot argue with someone who has dementia. You won’t talk them out of their mental state,” she explains. Instead, she’d say to him when he asked after their pet, “The dog’s doing fine,” which set his mind at ease. Eventually, she got a replacement pup, one her husband now loves. Though she’s been able to successfully manage such episodes, “there’s a sadness that goes with losing your partner,” she confesses.
Dr. Reuben confirms this move was the right call since Kent is correct about the futility of arguing with someone with dementia-related psychosis. “Better to change the subject or distract them with something else.” And, of course, pets offer a major source of comfort to those experiencing these types of issues, he says.
When Delusions Cross Into Aggression
Ho’s husband, a Vietnam vet, experienced delusionary thinking during the course of his dementia. He was obsessed with finding houses for homeless veterans, she says, often demanding she stop the car so he could write down phone numbers he’d see on real estate signs in order to call them.
He also became easily agitated. A screen door in the house would magnetically open and then close loudly, startling him as she shaved him, sometimes causing him to throw things at her, or even hit her on occasion. The razor she used may have also pulled his hair, causing pain, possibly triggering his violent reaction. “More often than not, the psychosis drives behavioral symptoms, [too],” Dr. Forester says. “Someone could have dementia with agitation, dementia with psychosis, dementia with depression, or dementia with all three.”
The Alzheimer’s Association recommends creating a calm environment by minimizing noise levels and distractions. So, when it was time to shave her husband, Ho says she’d make sure his hair wasn’t too long, and that his face was well-moisturized. And she learned to keep the screen door retracted. On drives when he’d spot real estate for the veterans that loomed so large in his mind, instead of resisting, she’d appease her husband, stopping the car and writing down the phone numbers herself, or helping him write them down. That would calm him, she says, and “by the time we got home, he’d forgotten about them.”
Riding Out the Storm
Tait says he still feels some guilt over how he reacted to an aggressive, delusionary episode: One morning, his wife started to choke him while he was trying to change her adult diaper. He pushed her off and she hit her head, resulting in a massive bruise. “It’s not always easy,” he admits. Now, he puts on headphones and listens to music as he does his work. He says this helps him maintain a sense of normalcy and routine—and a momentary escape from his day.
When a spouse or partner with dementia turns against you, it can be extremely painful, Dr. Reuben says, adding how important it is to understand that it’s the disease that is causing a loved one to lash out. Kent finds that not taking her husband Don’s behavior personally is the key to keeping her composure. And, she says that when all else fails, a sense of humor is helpful, too. “People who have dementia still want to laugh and enjoy their life,” she muses. “Find some laughter where you can, and you’ll find out you’re not as frustrated. And when you’re not as frustrated, they’re not as frustrated.”
Worry About Getting it Wrong
Ho said her husband became particularly combative after having an adverse reaction to new medication. “Two weeks of hell for me,” is how she sums it up. But within 48 hours of getting him off the drug, the problem resolved.
Dr. Forester says that health issues can trigger symptoms of psychosis, including hallucinations and paranoia, so it’s important to determine if that’s the cause. If a patient has an abrupt change of behavior or mood in just hours or days, he says it could be something more acute and related to a medical problem, like a urinary tract infection, a reaction to medication, or even COVID-19. Ho advises keeping a written log that allows spouses to see patterns in their partners’ behavior, which guided her. Writing everything down helps caregivers stay attuned to any issues that may have been brought on by medical problems unrelated to dementia, Dr. Forester agrees.
The Importance of Self-Care
Tait paid a caregiver $20 an hour to stay with his wife for a few hours twice a week, but couldn’t afford more than that. Yet those few hours afforded him enough of breather to return home to his dementia duties—and carry on. Ho believes that taking a 15-minute walk around the block with her dog each day was critical to maintaining her mental health during her own caregiving years.
Dr. Forester says it’s important to find ways to take a break and care for yourself. He often tells caregivers that “if they don’t take care of themselves, they’re going to die before their loved ones.”
Kent says the caregiving experience can be overwhelming. “You have to take the time to cry about it,” she says, but she believes that maintaining a positive attitude is key. “You can be down and depressed, but that won’t help you. You have to deal with it and make the best of the situation.” Ho adds that she often doubted her ability to care for her husband. Yet she was grateful “he took his last breath in my arms, at home with me. I was able to do it.”
Dementia Basics: National Institutes of Health. (2007.) “Prevalence of Dementia in the United States: The Aging, Demographics and Memory Study.” ncbi.nlm.nih.gov/pmc/articles/PMC2705925
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