Breaking News
More () »

The hidden side of dementia: Families fight over care, end-of-life decisions, finances, estates

Celebrity cases show dementia triggers family fights
FILE - In this Oct. 27, 2003 file photo, Casey Kasem poses for photographers after receiving the Radio Icon award during The 2003 Radio Music Awards at the Aladdin Resort and Casino in Las Vegas. Kasem, the smooth-voiced radio broadcaster who became the king of the top 40 countdown, died Sunday, June 15, 2014, according to Danny Deraney, publicist for Kasem's daughter, Kerri. He was 82. (AP Photo/Eric Jamison, file) ORG XMIT: CAET203

Casey Kasem’s widow battled his children to maintain medical control of the radio legend as he faded with a form of dementia.

The wife and daughter of actor and comedian Tim Conway are sparring in court over the care of the former "Carol Burnett Show" star. 

Similar disputes divided the families of country music icon Glen Campbell and R&B singer Etta James. "Star Trek" actress Nichelle Nichols is the subject of a court action brought by her son.

The high-profile legal battles around celebrities incapacitated by dementia are drawing attention to a phenomenon dividing many more families across the country.

When ailing adults can no longer manage their own affairs, responsibility shifts to family members often unprepared for the job – and unable to agree on medical care, finances and other sensitive areas.

While families of the rich and famous fight over multimillion-dollar estates, disputes among the rest of us – amid the pain of losing a loved one – can be equally bruising. 

“We find there’s a lot of conflict,” said Ruth Drew, director of information and support services for the Alzheimer’s Association. “Often times there are old family dynamics that are emerging, old stressors and old wounds that people thought were put to rest a long time ago.”

An estimated 5.7 million Americans are living with Alzheimer’s disease, the most common cause of dementia. That number is projected to grow as Baby Boomers age and live longer. About one in three people age 85 or older have Alzheimer’s disease.

This week, retired Supreme Court Justice Sandra Day O'Connor, 88, disclosed she has dementia. 

Many families are not prepared to care for an aging loved one. Only 9 percent of Boomers have planned to pay for a caregiver when they need such help, according to the Alzheimer's Association. Only 25 percent have completed a living will. 

California lawyer Dennis Sandoval specializes in estate planning and elder law. He says many aging adults find it difficult to talk about wills and other documents intended to guide end-of-life care decisions.

“People are in denial of their mortality. They feel like they are going to live forever,” Sandoval said. “They feel we can always get this done next week, next month.”

Sandoval’s law firm in Riverside, California, was appointed by a court to represent James, the Grammy Award-winning vocalist known for hits such as “Tell Mama” and “At Last,” in a family dispute in 2010.

James' husband, Artis Mills, and her son, Donto James, a drummer in her band, fought over her $1.5 million estate as she battled Alzheimer’s and other ailments.  

James’ original estate plan put her husband in charge. But her son approached her in 2008 and gained power of attorney, Sandoval said.

The sides settled the dispute, Sandoval said, with Mills acting as trustee and agent and Mills and Donto James sharing medical decision-making.

More: Alzheimer's, dementia and caregiving: 5 ways to manage stress, avoid family strife

More: CDC: Alzheimer's disease, dementia cases to double by 2060

More: First female Supreme Court Justice Sandra Day O'Connor announces she has dementia

More: ‘Highly fit’ middle-age women nearly 90% less likely to develop dementia decades later, study finds

Sandoval has been involved in many cases, involving  high-profile and ordinary families alike. When lucrative estates are at stake, he sees a common thread.

“People say it’s not about the money,” Sandoval said. “Almost every time, it’s about the money.”

'My mom was in total denial'

Jolene Maiden struggled with how to handle her mother’s memory loss.

Eileen Bowe moved near Maiden's home in Scottsdale, Arizona, after her husband died. Maiden's three younger brothers live in Colorado and California.

When Maiden told them she was noticing problems with their mother's memory and thinking, she says, they were skeptical. But they agreed she should be assessed by doctors.

Doctors diagnosed Bowe with dementia in 2015. Maiden and one brother were authorized to make medical and financial decisions on her behalf.

“My mom was in total denial,” Maiden said. “All of her anger was on me. She would say, 'Jolene is the one who took me to the hospital.’”

Credit: Patrick Breen/The Republic
Jolene Maiden (R) with her mother Eileen at American Orchards in Gilbert, Ariz. on October 11, 2018.

Maiden attended support group meetings through the Banner Alzheimer's Institute clinic, where her mother received medical care, and learned techniques and strategies to handle family conflict.

While she gained her brothers' support to get care for their mother, she says, not all family members embraced the idea. Maiden says one relative who talked frequently with Bowe said Maiden was making decisions against her mother's will.

That, too, would fade, Maiden says.

Her brothers moved their mom last year to a nearby assisted-living apartment. The first two days were tense. Bowe cried and asked Maiden why they moved her.

But Bowe has adjusted to the small community of about 40 residents, Maiden says. She participates in activities and has made new friends.

"She is very happy now," Maiden said.

Disagreements with stepparents

When a parent is ailing, conflict can erupt among siblings, or between children and a stepparent.

Social worker Samantha Williamson works with families dealing with dementia and other ailments at the Mayo Clinic. She says family feuds are common, and they're disappointing.

"Human nature can be the most glorious thing," Williams said. "Or it can break your heart."

Kelly Conway, daughter of Tim Conway, asked a judge last month to issue a temporary restraining order to prevent her father from being relocated from his nursing facility.

Because he was hospitalized at the time and recovering from a brain procedure, the judge decided not to issue the order.

Credit: Dan MacMedan, USA TODAY
ORG XMIT: DM 39717 SAG AWARDS 1/30/2011 1/30/11 6:26:19 -- Los Angeles, CA, U.S.A -- Tim Conway poses in the photo room at the the 17th annual Screen Actors Guild Awards at the Shrine Auditorium in Los Angeles, CA Photo by Dan MacMedan, USA TODAY contract photographer (Via OlyDrop)

Kelly Conway plans to convince the court she should be appointed her father's permanent conservator. Hearings are scheduled Nov. 2 and Dec. 14.

Kelly Conway says in court papers that her stepmother planned to move her father from his nursing facility in West Hills, California, "with exceptional care" to a "substantially inferior" Ventura facility that does not provide the level of care Conway needs. 

Tim Conway is now at Cedars-Sinai Medical Center recovering from the brain procedure. He has dementia and a history of strokes and is almost entirely non-responsive, Kelly Conway says in her court petition.

Tim Conway's wife, Charlene, argues in court papers that if the judge appoints a conservator, it should be her.

Charlene Conway did not return a phone message.

Kelly Conway worries that her stepmother is trying to cut off access to her father.

"My dad is my best pal in the world," she told USA TODAY. "We have an exceptionally close relationship, (and) it kills me not to be able to see him at least for a few minutes every day.

"That's what I'm fighting for."

Children fight for access

Court battles can last for years after the person has died.

Julie, Kerri and Michael Kasem filed a wrongful-death lawsuit against their stepmother,  accusing her of improperly caring for their father as he suffered from Lewy body dementia.

The children say Jean Kasem isolated the longtime "American Top 40" host and moved him to a hospital in Washington state, where he died in June 2014. The case is scheduled to go to trial next year. 

Credit: Nick Ut, AP
Jean Kasem, wife of veteran radio personality Casey Kasem, talks to the media outside Los Angeles Superior Court Wednesday, June 11, 2014. A lawyer says a judge has granted Kerri Kasem, the daughter of Casey Kasem, the authority to withhold medication, food and fluids from her ailing father. In the ruling Wednesday, attorney Troy Martin said, Superior Court Judge Daniel Murphy determined that giving Kasem food and fluids would be harmful and cause more pain for the 82-year-old former radio personality. Jean Kasem pleaded with the judge to restore food and fluids to her husband, who has a form of dementia. (AP Photo/Nick Ut ) ORG XMIT: LA111

Jean Kasem fired back with her own wrongful-death suit, filed at U.S. District Court in Tacoma, Washington, claiming Kasem’s three adult children from a previous marriage engaged in a "homicidal guardianship scam."

Jean Kasem, the actress who played Loretta Tortelli on the long-running sitcom "Cheers," also named as a defendant Catholic Health Initiatives, which owns the hospital in Gig Harbor, Washington, where Casey Kasem died.

She dropped the lawsuit against the children last year but still pursued her case against Catholic Health Initiatives. U.S. District Judge Benjamin H. Settle granted the hospital's request for summary judgment and ruled in September that the facts "would not allow any rational juror to find for Jean."

Michael Kelly, a Seattle-area attorney representing Jean Kasem, said they were discussing whether to appeal. She did not return an interview request made through Kelly.

Kerri Kasem, a radio and television host, said the battle to gain access to their father and control his medical care was "the worst year of my life."

Credit: Ted S. Warren, AP
Kerri Kasem, right, the daughter of ailing radio personality Casey Kasem, leaves the Kitsap County Courthouse, Friday, May 30, 2014 in Port Orchard, Wash. Kasem was in court as part of an ongoing dispute with her stepmother Jean Kasem, over whether her father is receiving adequate medical care. Casey and Jean Kasem have been staying with family friends in Washington state. (AP Photo/Ted S. Warren) ORG XMIT: OTK

The experience prompted her to launch nonprofit foundations to raise awareness and pursue legislative efforts around elder abuse. The work has led to legislation in 12 states allowing children and other family members to visit elderly loved ones without petitioning a court.

Travis Campbell, who battled with his stepmother for the rights to visit Glen Campbell, and Kelly Rooney, who was isolated from father and actor Mickey Rooney, have supported Kerri Kasem's efforts in public appearances and in testimony before state legislators.

Kerri Kasem said visitation is key, because abuse is more likely when an elderly person has become isolated.

The Kasem siblings say Jean Kasem mistreated their father. They filed complaints to Adult Protective Services in California and Washington and police in Los Angeles and Santa Monica.

A Santa Monica detective investigated the case and submitted it to the Los Angeles County District Attorney's Office, which declined to charge Jean Kasem. No actions resulted from the APS complaints either, Kerri Kasem said.

"We had to go the O.J. (Simpson) way – that is, suing her for wrongful death," Kerri Kasem says.

Jean Kasem has rejected allegations that she mistreated Casey Kasem. In the federal case, she described them as "a form of extreme harassment, media exploitation and prejudicial publicity" against her for the siblings' "guardianship scheme" of Casey Kasem.

More: The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories

More: The Long Goodbye, Part 2: When dementia sets in, the 'new normal' isn't normal at all

More: The Long Goodbye, Part 3: What we've learned about dementia and what we're facing

While the siblings' lawsuit works its way through the court, Kerri Kasem has advocated for victims of elder abuse. 

Abusers may include a parent, a stepparent or a sibling who gains guardianship of a family member. In some cases, it can be a close friend who cozies up to an elderly person and seizes guardianship when family does not.

Kerri Kasem said abuse is also possible when a court appoints a public guardian to oversee a person's affairs. 

"We see public guardians in it just for the money," she said. "These people are using our elderly as human ATM machines."

Experts say such conflicts show the need for families to communicate and plan for the incapacitation of a loved one – before it occurs. That can include estate planning to distribute assets and advanced directives that determine the level of medical care a loved one wants.

Drew, of the Alzheimer's Association, said families who are able to talk to one another and share responsibility can avoid the squabbles that commonly emerge.

"There is just nothing easy about this disease," Drew said. "You see what this disease is doing to somebody you care about. It's very stressful."

Before You Leave, Check This Out