Slipping away: As schizophrenia consumed Melinda Kavanaugh, family and system couldn’t help

BY JOE ROBERTSON
jrobertson@kcstar.com

Mom was sick again. The 11-year-old boy riding with her in a cab bound for the Kansas City airport hoped somehow it wasn’t true.

How could this be? How was she getting plane tickets to California? How could they really be going to Disneyland, completely out of the blue?

She had pulled him and his little brother out of summer Cub Scout camp for this. He wanted it to be real.

It’s real, she assured him, her face lit in irrational joy. Martin Riggs was taking them.

Martin Riggs? He knew that was Mel Gibson’s character in “Lethal Weapon.”

But he’s a cop in a movie, Mom!

In that moment, the wedge young Paul Kavanaugh had braced between himself and his mother’s ailing
mental health was crumbling.

He was awakening to the powerlessness already felt by his dad and his mom’s two older sisters.

Over the next 20 years, they saw, like so many other families, how a community and its mental health services cannot save someone who fights those who would help her.

They watched her care suffer for shortages of case managers and doctors.

They tangled with health care systems and their strict interpretations of HIPAA, the medical privacy law.

They couldn’t force her into treatment when she needed it until she was, by law, a verifiable and imminent threat to herself or others — which was too late to keep people from getting hurt.

The end, most painful of all, came early this year.

Melinda Kavanaugh, her physical health failing through years of medications, had shut her family out, barricading herself alone in a small rented house set amid the suburban clamor of apartment buildings and businesses just off Nieman Road in Shawnee.

Her sister Susan Blankenship couldn’t abide the hamstrung mental health services anymore and sent urgent pleas for help to multiple levels of agencies, all the way up to the governor’s office.

“Melinda is absolutely at the mercy of the State of Kansas,” she wrote in one letter.

But when police finally forced their way into the home on a cold January day, they found a body that had lain on the kitchen floor probably three weeks — Melinda, dead at 56.

‘You can’t do a thing’

Paul’s favorite picture of his mother is undated, maybe from the early 1980s. She looks to be in her early 20s, maybe even still a teenager. Swoops of rich brown hair frame her face.

“I hear these stories about her before that night,” he said.

He means before she had her first psychotic break while she was a sophomore at the University of Kansas, before anyone knew anything at all of what was coming.

She had been a brilliant student, Susan said of her youngest sister. “A golden child.”

“I’ve heard how she was a cheerleader,” Paul said. “And how she was so bright. And then all of a sudden this pops up in the night.”

He is an artist, seeing life in images. He wants to remember her, but for so long the closest he’d gotten to it all is his own turbulent self-portrait, showing starkly shadowed arms framing a downcast face.

“My whole life, it’s been crazy,” he said.

Susan is an artist too. The collage and painting she has shaped since Melinda’s death wrestles with grief, anger and torment.

Two blue fists grip steel bars out of the faceless dark of a prison cell. The image splits the two halves of a human brain — one side gilded and alive, the other half ashen and splintered.

A turbulent galaxy of torn paper surrounds it all, some shreds with blood red edges, but others gathering at the yellow glow in the far corner — the light where Susan hopes her sister now rests.

“I thought it would be cathartic,” Susan said. “But it’s made it harder. It tells me I’m still thinking about her. I haven’t come to terms with it.”

The idea still presses on Paul: “It seems something could have been done.”

His own search began as that 11-year-old, after the fanciful dream of Disneyland.

His mom didn’t have cab fare, and she acted like it was a game. She had Paul and his brother dash with her into the airport. Security intercepted them inside.

Their dad was an adult leader at the Scout camp, so police returned the boys there to his care, and to the weight of the other Cub Scouts’ knowing eyes.

“I never felt so exposed,” Paul said. “So low.”

His mother had schizophrenia, he was told. He read about symptoms and medications.

His dad had told the boys before, when Mom would burst out with anger or odd behavior, that he and Mom could handle it — that she sometimes just needed medicine.

But it wasn’t true. Like so many other families tending to a member with severe illness, they could
not help her, nor could the mental health services they increasingly called on as she began to shun her medications.

After the first few years with the illness, she never went to a hospital or clinic voluntarily, said Stephen Kavanaugh, Paul’s father, who was married to Melinda for 20 years.

“You can’t just show up at a mental health facility and say, ‘She’s going off,’ ” Stephen said. “When you need a doctor, you can’t get a doctor. You’re stuck. You can’t do a thing.”

When she did go, law enforcement helped. She also for several stretches received help from case
managers through the Johnson County Mental Health Center.

The help would work for a while, Susan said. The caseworkers were good for her. But they are overloaded with cases — an experience many families on both sides of the state line have shared with The Star. And there is high turnover.

“As soon as you move off their grid, when you’re not answering the phone or answering the door, then
nothing can be done,” Susan said.

Stephen said he kept hoping Melinda would be aware of what she needed to do to stay healthy.

“But (her) mental illness didn’t allow that to happen,” he said. “My wishing for it didn’t
matter.

“She got to the point that she did not want any doctor. She was done with the system.”

The worst break came during Paul’s early high school years. She disappeared to California, then returned unexpectedly at her parents’ house on Father’s Day, 2002, convinced for no rational reason that her parents were evil.

She came with duct tape and bound her mother, who either was pushed or fell down the stairs. Melinda then met the criteria of a verifiable and imminent danger, and she would be court-ordered to the state hospital at
Osawatomie.

There were many times over the years, when things were good, when Melinda was taking care of herself, that “she was very sweet when she wanted to be,” Paul said.

But she seemed so far from that when he was 16, crying in a Johnson County courtroom, listening to his mother rant at the judge.

He retreated into his art at home and at school. Friends, he said, would ask him, “Aren’t there things you can do?”

No, he told them. “They can try some new concoction of pills,” he said, but no, “they don’t have any answers.”

Cuts and obstacles

Tim DeWeese’s spreadsheet at Johnson County Mental Health Center produces a tumbling budget line.

State revenue from grants and contracts has fallen 30 percent over the past 10 years, the center director’s numbers show.

The drop in annual revenue from $4.95 million to $3.51 million comes as the population of the county it serves has been growing by some 8,000 residents a year.

The center has cut its staff by nearly a quarter in the past three years, he said. Caseloads that were 15 to 18 each are now 25 to 28 per manager.

The cuts hurt families, DeWeese said. Families on both sides of the state line seeking help for someone who is slipping back into crisis say they often learn that a familiar case manager is gone or the patient has been dropped from the caseload.

“We are put in that dilemma on a regular basis,” he said. “We’ve got so many coming in the front door that some have to go out the back door. We have to focus on the individuals who have the most disabling kinds of conditions.”

And even under rosier circumstances, the work of helping people with severe mental illness is hard, said Robbie Phillips, director of assertive community outreach for Truman Medical Centers Behavioral Health, which serves much of Jackson
County.

“Keeping people off the street requires an intense level of case management,” he said. “Sometimes multiple times a week, sometimes daily, sometimes on off hours.”

It’s a skilled, demanding job requiring professional relationships, he said, but it typically pays in the $30,000s. So turnover often is high.

And mental health care professionals face the same barrier as family members — often trying to encourage treatment they can’t force on the person.

Sometimes clients do not want their information shared with anyone, including family.

“What we wholeheartedly believe is that people with mental illness have the ability to determine their care,” Phillips said.

“I don’t know that there is an easy solution out there. (Family members) can call us and we will respond. We can try to mediate, but often that’s all we can do.”

Mental Illness Policy Org, in New York, wants changes in the Health Insurance Portability and Accountability Act to give doctors and mental health care providers more discretion in sharing information.

Too many providers default to providing no information, the group says. DeWeese calls it throwing up a shield.

An adult might land in a psychiatric ward and the hospital can’t tell anyone the person is there. Or a person may be released and family members not know about it, or have no information to help with follow-up care.

Melinda never wanted family visitors or any information shared, her family said.

At least at Osawatomie, Susan said, staff members listened to information that family members thought they should now about Melinda. They thanked the family for it, without directly acknowledging that Melinda was there.

Families can try, pre-emptively, to arrange a HIPAA release or prepare a durable power of attorney for health care purposes with their family member.

But that can be hard too, estate planning lawyer Kirsten Schroeder Larsen said.

“It is very hard for people to give up control, even if intellectually they know the time may come that they need it,” she said.

Ideally, such releases can be arranged between parents and as the child is turning 18 —to prepare for any unexpected health crisis that could come, she said.

When it is too far along, as with Melinda, where no cooperation is possible, the alternative is seeking guardianship. It is an expensive, potentially combative route, the lawyer said. It would allow sharing of information and it would lend opportunities to choose doctors or facilities, but it is just as powerless to compel treatment on someone who refuses it.

Sometimes, said Kiersten Adkins at Pathway to Hope in Olathe, families need to accept a new state of grace.

There are fights to wage for rights and stronger institutional and community support for mental health, she said. But parents, like herself, and other family members of an adult with mental illness need to be able to shed some of the responsibility for their child’s happiness.

“You have tohave the grace to allow your child to be where they’re at,” she said. “It’s not mine to learn how to fix. It’s mine to learn to live with.”

Searching for purpose
They’re looking for grace — Susan, Paul, Stephen and others who knew Melinda.

It’s a search for purpose in her life beyond the way it ended, trying to waken the community around that simple house where she died.

Maybe, Susan hopes, she’ll get the images of Melinda’s end out of her head.

It’s all in her imagination, because the police told her to stay in her car when she met with them to enter the house. Susan was hoping Melinda was safe inside, stubbornly OK, or maybe off to California again. The officers sensed it might
be bad.

Susan said her imagination is “very active.” The helplessness of it all angers and grieves her.

So come new images — a cherry tree in Paul’s backyard. Family gathered at the end of March for Melinda’s birthday — she would have been 57 — and planted the sapling. Melinda had always loved flowering fruit trees, Paul said.

They wrote messages on ribbons, white, yellow and green, and tied them to the branches. Paul’s said: “I love you Mom.”

He is also moving past his stormy self-portrait, finding solace instead in a sweeping Kansas sky.

He was planning the painting before his mom died, but as he worked on it, “it became about her, something of a new chapter,” he said.

Brilliant white clouds splay across a towering blue sky over rolling waves of wheat.

On the horizon, through soft clouds, the morning sun is rising.