A Journey Through Dementia
Losing Debra: Caregiver to care-receiver
Today, meet John Halvorson and Debra Muren, early-onset dementia sufferers in the middle of their long goodbyes.
ONE DAY EARLIER THIS YEAR, Nick Muren — 13 years old at the time — found this note from his dad on the dining-room table:
I need you to step up and be your mom's companion today. Always remember she loves you with all her heart. She needs to be reminded to go to the bathroom every couple hours. If you have problems, call me.
Nick's mom, once a registered nurse at Overlake Hospital Medical Center in Bellevue, started showing symptoms of degenerative dementia five years ago. She was 46.
Now 51, Debra Muren's decline has been rapid and devastating. In the past 2½ years, the vibrant, talented wife and mother has almost completely disappeared.
She can't speak more than a few words. She needs 24-hour supervision and patient, step-by-step instructions for getting dressed and going to the bathroom. Her family often has to cut her food for her and remind her how to eat. One morning, she repeatedly tried to eat her toast with a spoon.
"We are learning to be good caregivers and good grievers at the same time," explains her husband, Gene Muren. "Some days, the heartache of our situation is almost unbearable."
Before Gene Muren knew what was wrong with his wife, her odd behavior strained their marriage.
"Her lack of attentiveness, lack of emotion, failing homemaker skills and lack of mothering supervision to our youngest son were causing significant conflict in the family," he recalls.
"Doesn't she love us anymore?" he wondered.
Such tension is common in families struggling with early-onset dementia, he has since learned.
He wonders how many people get divorced or families fall apart before they know what's really wrong.
When she was diagnosed with dementia in late 1999, he felt guilty — and a deep sadness over what no longer would be.
"She still sleeps next to me at night," he says. "We still hold hands when we go someplace.
"But it's more like a platonic sister-brother relationship."
The couple's middle son, Shelby, 25, gained an early discharge from the Navy so he could help care for his mother. He's also helping raise his younger brother. He wants to make sure Nick "gets the quality time he needs and doesn't have a detrimental childhood. ... It would be too great for my dad to do it alone."
The brothers play catch, snowboard and go to the movies. They work out together to get Nick in shape for high-school sports. Shelby makes sure to ask Nick about his homework, whether he brushed his teeth, where he's going when he goes out.
"I look at the other things I would be doing right now," says Shelby, who works in sales at a plumbing-supply company near home. "They're great things, and I can't wait ... but some things are more important than pursuing my own life."
The oldest Muren son lives in Washington, D.C., and visits whenever he can.
A recent brain scan was inconclusive in pinpointing whether Debra Muren has early-onset Alzheimer's or a dementia called Lewy body disease. Doctors say the rapidity of her decline makes it likely she will need institutional home care relatively soon.
"The sad thing is I've got to run off Monday through Friday and fulfill my responsibilities as an employee when it's probably going to be two to four years before she has to be placed," Gene Muren says. "The remaining days are passing by now."
On a typical morning, Gene showers and dresses his wife and gets her breakfast before he leaves for work in administrative support at Boeing. During the school year, two professional caregivers rotate during the week, communicating with each other and Gene through a journal they keep to monitor the ups and downs of Debra's health, emotions and behavior — all the things she no longer can express about herself. The in-home care costs about $1,600 a month. Social Security disability pays Debra $900 a month, and Gene pays the rest out of pocket.
He's sought legal advice on how to pay for the heavier, more specialized dementia care she likely will need some day. The Medicaid reimbursement rate averages around $4,000 a month for such skilled care in a nursing home. The rate a private party would pay may be higher.
Some days, Debra is content doing simple crafts or helping stir a pot of chicken and dumplings — the only kitchen chore she can manage anymore.
Other days, she just cries.
"I just let her," says caregiver Patti Caney. "I never tell her, 'Don't cry, it's going to be OK.' Because that's not true."
Caney's caretaking doesn't stop with Debra. On Nick's birthday, she stuffed his bed with balloons and put a "Birthday Zone" banner across his door.
"She's my second mom," Nick says.
Does that make him feel strange?
"Shoot," he says, "I don't care who gives me a birthday present."
Nick watches his mom when he gets home from school until his dad or brother gets off work. Once, he had to help her get dressed.
"That was kind of awkward."
But otherwise, he doesn't mind.
"She can still do some stuff," says the boy, who just turned 14. "She's still my mom and everything, and she still remembers some things. ...
"Maybe she doesn't come up and give me a great big hug and a kiss. But I'm a teenager now, so I don't really want her to do that."
He tries not to take advantage of her confusion to "get away with stuff." Mostly, he feels sad for her, especially when she starts crying for no apparent reason.
"I just try to comfort her and make a little joke. You know, cheer her up, and after that she's fine."
What's his advice to other children who face a similar situation?
"It's only going to get worse. So, don't get angry. Don't expect things to get better ... stay patient."
Not so long ago, on an afternoon together, Nick is stretching out on the sofa, watching dirt-bike racing on TV. His mom sits in a chair behind him, sniffling. She folds and smoothes a dish towel in her lap. Folds and smoothes. Folds and smoothes. Mumbles. Rubs her hands. Sniffles and frowns. Rubs her forehead.
"Are you all right?" Nick asks.
"Yeah... " his mom says.
He keeps looking over his shoulder at her, just in case.