A Journey Through Dementia
Losing Debra: Cruel dilemmas clutter the trail of a failing mind
Seattle Times staff reporter
Debra Muren pauses in her constant wandering, gives a happy little "hmmmm" and picks out the bright candies a piece at a time. Her dull stare sharpens a bit.
But Gene realizes it has little to do with him. "I don't think she really knows me," he says flatly.
Nor does Debra know she turned 53 last November or that her youngest son attended his first high-school dance. She doesn't know that her middle son got married or that a candle was lit in her honor because she couldn't attend the wedding.
And she doesn't know that Gene Muren really isn't her husband anymore. Last year, he made the agonizing decision to get a "Medicaid divorce" to protect himself and their young son from poverty.
All Debra Muren knows in this moment is that the yellow M&Ms are the prettiest.
"Wow," she says.
IN BETTER DAYS, Debra Muren was a registered nurse, a self-taught seamstress, gardener and science-fiction fan. She was an easy-going, encouraging mother to her three sons and a best friend to her husband, Gene. They met when she was 17 and he was a young engineering student. For the next three decades, they bowled together, square-danced together, attended church together.
But a few years ago, Debra started to lose some of her vibrancy and make mistakes at work — so many that, in 1997, she lost her job at Overlake Hospital Medical Center in Bellevue. Over the next 18 months, she was tested, treated for stress and lost two more jobs. Then, in 1999, she was diagnosed with progressive dementia — probable Alzheimer's disease. She was 49 at the time, with no history of dementia in her family. The Murens' youngest son, Nick, was just 11.
The diagnosis put a rude halt to a life that held the promise of seeing Nick into manhood and then retiring with Gene, to travel and spend winters in Arizona.
Instead, the Murens were thrust into a growing fraternity of families dealing with the emotional and financial ravages of early-onset dementia. They were among three families who spoke publicly of that torment in a series in The Seattle Times in July 2002.
For Nick, a serious student and baseball player, it meant an abrupt end to childhood. In the months before Debra was placed in an adult family home in December 2002, he spent his time before and after school watching over her. For son Shelby, now 27, it meant an early discharge from the Navy so he could move home to help mentor his younger brother and support his dad.
For oldest son Jeff, 29, it meant leaving the U.S. Secret Service in Washington, D.C., so he could be closer. He's now with the State Patrol, living in Olympia.
And for Gene, it meant making impossible choices between caring for his wife or caring for himself and his son.
Just as surely as Debra's dementia broke his heart, it drained his savings account, forced him into the tangled world of insurance bureaucracy, left him battling depression and raging at God.
"I've done enough bad things in my life to be punished," he says. "But Debbie's never hurt a fly. How could a caring, loving God who is the creator of everything allow something like this to happen to one of his creations?"
GENE MUREN MARRIED for better or worse. If he were retired, he says, he'd be taking care of his wife at home in Bellevue.
But he has a full-time job in engineering support at Boeing and a teenage son. As Debra sank deeper into her disease, her needs eclipsed the family's ability to care for her. She forgot how to take a shower or dress. She couldn't speak more than a few random words.
At first, Gene hired caregivers to come to the house. Debra's $860-a-month disability check didn't begin to cover the cost: $2,000 a month. So each month, Gene paid more than $1,000 out of pocket — 25 percent of his take-home pay — in his determination to keep Debra home.
Then in late 2002, barely two years after her diagnosis, Debra's behavior took a dramatic and dark turn, from quiet and sweet to agitated, aggressive and paranoid. She threw things, pushed and pulled people, refused to come to the table to eat or to sleep in her bed. She wandered through the night, opening and closing doors. She repeated the same phrases over and over:
"It's over here."
"It's over there."
"Oh my God."
"Why did you do that?"
As a precaution, the family hid the knives and scissors.
"Debbie's a pretty amiable person," Gene said. "To see the way she turned for a few weeks was really terrible."
She was hospitalized for a month, and then doctors advised it was time for her to be placed in a skilled-care facility.
The news was devastating — and a relief.
"We weren't sleeping," says Shelby Muren, who works for a plumbing-supply firm. "It was just so crazy at the house. It finally came to we just can't do this anymore."
MAKING A DECISION doesn't pay for it.
Gene sought the counsel of three different lawyers who, he says, advised him that the "only way that I could protect my retirement assets and adequately cover Debbie's needs was to get a divorce."
Debra's in-home care had already devoured the couple's savings account. The Murens' standard health-insurance policy didn't pay for in-home or nursing-home care for dementia. Given their relative youth, they hadn't even thought about purchasing long-term-care insurance, and after Debra was diagnosed with dementia, she couldn't qualify.
All that was left was Gene's 401(k) retirement account.
"Your life mate is dying of a terminal illness and there's nothing you or anybody else can do about it," he says. "And you see that everything you planned and worked for together as a team is going to be lost to the cost of the illness."
Gene could withdraw money from his 401(k). But he would have to pay an early withdrawal penalty and income taxes — considerably reducing the amount.
To complicate matters, Gene would have to gut that account before Debra qualified for Medicaid — the only other assistance available.
Washington state counts a 401(k) as an asset in determining eligibility for Medicaid support in long-term care. The rules state that a healthy husband or wife can keep no more than $92,760 in assets in order for a sick spouse to qualify for Medicaid support in a nursing home. If the care is in an adult family home rather than a nursing home, the healthy spouse can keep far less in assets — $40,000. A primary home, car and a few other essentials are exempt.
The average cost to a person paying privately for nursing-home care in Washington state is $5,204 a month. Since there was no way of knowing how long Debra would live, there was no way of knowing how long Gene's money would last. He could be left without resources to help Nick through college or to support himself in retirement.
His other option: divorce.
Then Debra, as a single person living on Social Security, would qualify for Medicaid.
So-called "Medicaid divorces" are controversial. Washington and many other states are trying to eliminate loopholes that allow couples to divorce their way into subsidized health care, or to shelter assets that otherwise would disqualify them from Medicaid.
Advocates for the aging are pushing to have long-term care financed through a social insurance program that everyone pays into over time. Others, including Gene Muren, argue that private insurance should cover the cost of Alzheimer's just as it does other major illnesses.
But his wife's needs couldn't wait for those reforms — if they ever come. After paying into the system all their middle-class lives, Gene thought he and Debra deserved some help in return.
"Our world has been turned upside down," he said. "Now, we have to be on the receiving end. I don't think we should have to be embarrassed about that."
IT STILL TOOK MONTHS of agonizing and counseling — from his minister and supervisor — for Gene to settle on a divorce. He felt he would be abandoning his best friend and his marriage vows.
But he also felt if their roles were reversed, or if Debra could speak for herself, she'd vote for divorce. "It wasn't out of lack of love or lack of desire to care for her, but financial need," he says.
So in early December 2002, Gene moved Debra into an adult family home, not far from their house in Bellevue, that specialized in dementia care for women.
Their divorce was final Dec. 10.
On Dec. 19, just as he had done every other year of their marriage, Gene brought Debra two dozen roses to celebrate their anniversary — their 32nd.
"In my heart, I'm not divorced," he said at the time. "In the state's eyes and the eyes of our legal system, I'm divorced. But she's still in my heart."
DEBRA SPENT HER DAYS wandering the adult family home, nuzzling a stuffed dog that looked like the family poodle. She chattered nonstop: "So you do that and it was true and so these were something like that and I was right here. And I was right there. And I was right there. But I didn't know that." Sometimes her nursing instincts kicked in and she tried to take other residents for a walk.
Gene visited often, bringing cards, flowers or candy. Sometimes he took her back to their house for dinner. Sometimes he got an "I love you" and a few kisses.
The adult family home cost about $3,500 a month. Medicaid paid about $1,500, supplementing Debra's $860 disability check. Gene paid the balance — from $1,100 to $1,200. It was worth it to him because the home was so close and the care so good.
But it meant nothing was left over.
And Gene's emotions were as strained as his paycheck. There was anguish over Debra, the demands of being a single parent, the demands of his job. He was on medication for stress, high blood pressure and high cholesterol.
Without the daily responsibility of caring for Debra at home, he sank into a depression and sometimes struggled to get out of bed in the morning.
"I was totally lost," he says. "I didn't have a purpose anymore."
Then one day last spring, some old friends lured Gene out for a game of golf. That's when he realized how lonely he was for companionship — for normalcy. He realized he didn't want to be "a lifelong victim of Alzheimer's."
"Hopefully, I've still got a lot of years left," he says. "I can either live in pity over what we've gone through, or I can try and overcome it."
He lost weight, made it a point to see friends, started dating, started moving his life forward — just as Debra's continued to hurl backward.
Eight months after moving into the adult family home, Debra was evicted. She was younger and stronger than most of the residents and became too much to handle, especially when she became incontinent.
The only opening Gene found at a nursing home with a dementia unit was at Park West Care Center in West Seattle.
Debra's Social Security disability still pays $860. But now, because she's in a skilled-nursing facility and because she's single, Medicaid pays the rest.
GENE'S FINANCIAL OBLIGATIONS to Debra ended with the divorce. The emotional bonds are not so easily severed. He has decorated Debra's room with stuffed animals and photographs of the family. He brings M&Ms or chocolate muffins to distract her from her endless wandering. When she grows restless and needs to walk, he grabs her hand and goes with her.
"I've got a responsibility to make sure she's cared for," he says. "But the Debbie I loved really left us a while ago."
His focus has shifted to his sons — especially Nick, now 15. The teenager's life is caught up in school and baseball. Over the Easter break, he joined a church group that went to Mexico to help build houses.
But watching his mother slowly deteriorate has left him more serious and reflective than many boys his age. "I don't think he'll ever go through a period where he thinks he's invincible," Gene says. "I think he has a better perspective about the frailty of life."
Last November, Gene urged Nick to come with him when he visited the nursing home for Debra's 53rd birthday. She couldn't figure out how to open the box of chocolates they brought.
And she didn't recognize Nick.
The shock made Gene Muren realize he had to let go of the past. He still visits, although Debra often shuffles past him without recognition.
"My hands are tied. There's so little I can do to help," he says. So he has become an advocate; he recently took vacation time to travel to Washington, D.C., to lobby Congress on dementia causes.
Last December, for the first time in 33 years, he did not give Debra two dozen roses to mark their anniversary.
But on Easter Sunday, he took her a large spring bouquet.
Marsha King: 206-464-2232 or email@example.com
Tom Reese: 206-464-8142 or firstname.lastname@example.org
Correction: Washington state has actively tried to eliminate loopholes that allow people to transfer or shelter assets and still qualify for Medicaid. But the state has not proposed action to prevent divorces that aim to protect assets for a healthy spouse so an ill spouse can collect Medicaid. This story may have left readers with the impression that Washington state had attempted to take action against such "Medicaid divorces."
Copyright © 2004 The Seattle Times Company