'In our hearts we are married'

LOVE, MARRIAGE, CARE GIVING: Juggling those three words can be difficult for couples when ALS is involved. However, one Knox County couple vows to make romance work


Sunday, September 2, 2007

By CLARE HOWARD

of the Journal Star

Bryan Eklund and Stefanie Emstrom woke up four years ago and decided to get married. It was a bitter cold day.
They walked into their empty church and knelt alone at the altar, exchanged vows with each other and then hummed the wedding march as they walked down the aisle and out of the building.

There were no witnesses. No minister. No wedding dress. In fact, the bride wore dress pants and sturdy shoes in case she had to physically support the groom.

The next time Eklund and Emstrom marry - the legal time - it will be when Eklund is days from death.

That's because the government will pay Emstrom to be a caregiver for Eklund, who has amyotrophic lateral sclerosis (also known as Lou Gehrig's desease), only if they are not married. Spouses in Illinois don't get paid as caregivers, but the question of pay for spouse caregivers is part of a national debate.

Medicare, Medicaid and most states generally do not pay spouse caregivers, but there are exceptions. Vermont recently received a waiver from Medicaid and will, in some situations, pay spouse caregivers. Ore-gon has paid spouse caregivers for a decade out of the state's general revenue fund. This year, the spousal payment program in Oregon was transitioned into Medicaid.

Joe Easton, manager in the home services unit for seniors and people with disabilities in Oregon, said the state has home assessments and strict criteria for spouse caregiver payments. He termed the program a "win-win" because it helps people remain at home rather than in nursing homes.

In Washington state, there is no spouse caregiver payment plan. Bill Moss, office chief with home and community programs at the Department of Social and Health Services, said spouse caregiver payments can place too much control in the hands of spouses and abusive situations can develop.

ALS patients, Alzheimer's patients and those with other disabling diseases often need full-time care if they are to remain at home. A recent AARP study estimates the economic value of family caregivers in 2006 at about $350 billion. If the burden of that care fell to the government, it would overwhelm the system, supporters of family caregivers say.

Right now, nationwide, the burden falls on unpaid family caregivers for the vast majority of the ill and disabled, said Mary Jo Gibson, strategic policy adviser with AARP.

Emstrom said, "Some day Bryan will need care 24 hours a day, seven days a week. There are taxes, utilities and food to pay for. Some couples divorce so one can stay at home and be a caregiver for the other. The sanctity of marriage is being jeopardized."

Speaking with difficulty, Eklund, who is now in an electric wheelchair, said, "We know in our hearts we are married."

Eklund, 47, and Emstrom, 48, began their difficult and improbable life together after both were divorced. Grown children from their previous marriages have not always understood the new relationship.

"We are supposed to set an example for our children. Instead, Bryan's children could look at me as their dad's live-in," Emstrom said. "If legislators could step down and live like common people, give up their $400 haircuts, they'd see this is not right."

Eklund, a farmer, started noticing physical problems in 1987 when he was 27.

"I noticed something was wrong. He'd walk across the yard and drag his left foot," said his mother, Helen Eklund.

These little signs mounted until he was diagnosed at the Mayo Clinic in Rochester, Minn., with ALS on his 28th birthday. The doctor told him to go home and get his life in order because he had three to five years to live. Even after the diagnosis, Eklund tried to continue farming with his brother in Knox County. He and his wife had their third child.

But by 1995, he hit rock bottom. His marriage was falling apart, he was having trouble feeding himself and consequently was losing a lot of weight. At 5 feet 11 inches, he was down to 118 pounds. In 1995, at age 35, he moved back in with his parents.

Sometime after that, anonymous cards started appearing in the mail. The cards were supportive, encouraging and boosted his spirits.

They were sent by Emstrom, who learned about Eklund's problems through a friend and wanted to offer a little support.

"I wasn't looking to change my life. I was trying to do something kind," she said.

The two ultimately met and became close friends. With his encouragement, she enrolled in nursing school, a longtime ambition. After earning her licensed practical nursing certification, she worked at Cottage Hospital. She later left that job to become Eklund's full-time caregiver. They both know ALS is incurable, and he will become progressively more disabled. In 2001, they moved in together in a home in rural Knox County near his brother and his parents, who also help with care.

Eklund is now on total disability. Emstrom receives pay as his personal care assistant, but she has no health insurance benefits.

"That is scary for me," she said. "If I get sick, how will I care for Bryan? Right now as a nation, we are spending so much time and money taking care of people on foreign ground but not people right here at home."

Bob Wessels, executive director of the Amyotrophic Lateral Sclerosis Association St. Louis Regional Chapter with a service region extending to central Illinois, said his organization supports efforts to expand payments for spouses who are caregivers.

"We absolutely feel it is just, especially with such a disabling disease when medical expenses can exceed income levels. So many people with these diseases top out their insurance payments," he said. "If they have young children and must give up their house in order to go into a nursing home, that's a tough issue. This disease has broken up families because of finances. A lot of caregivers abandon families. There is a higher suicide rate among caregivers."

Wessels said ALS usually runs its course from diagnosis to death in two to five years, but there are unexplained cases where survival is decades. He said that 5 percent of all diagnosed ALS patients live longer than 15 years. He has heard of a few patients who survived 25 years.

Amy Friedrich, policy specialist with the Family Caregiver Alliance, said financial support for spouse caregivers is rare. Long-term support for caregivers comes primarily through Medicaid, which currently excludes spouses unless there are special waivers, as in Oregon and Vermont.

The Family Caregiver Alliance supports a variety of efforts to offer financial assistance to spouse caregivers, including tax credits and paid family leave policies. With America's aging population, the issue will become increasingly critical, Friedrich said.

Roseann Visintin, aide to Sen. David Koehler, D-Peoria, researched state legislation and found no bills proposing financial payments for spousal caregivers. Koehler said he is willing to investigate further to determine if a program could be structured in Illinois.

Kathi Kupferschmid of East Peoria is the wife and caregiver for her husband, Dennis, who has ALS.

"The government would pay anyone to care for my husband but not me. I was told if I divorce Dennis, the government would pay me, but I just refuse to divorce. My bond with Dennis is stronger than that," she said.

Kupferschmid said the current system is not cost effective because it drives spouses to take jobs outside the home and costs the government more when patients are then institutionalized rather than being cared for at home.

Dennis Kupferschmid was diagnosed with ALS nine years ago and has been totally paralyzed and on a ventilator at home for the past four years. He requires 24-hour care.

He and his wife have been married for 22 years, and two years ago they renewed their wedding vows.

"I stood before God and said 'till death do we part.' I intend to do that," Kathi Kupferschmid said. "We stretch our money every month, and we get a lot of assistance from my mother, who lives next door, and from other family members. But if I took a job outside the home, Dennis would be in the hospital or a nursing home, costing the government much more money. I save the government thousands and thousands of dollars, and I'm not even recognized."

Clare Howard can be reached at 686-3250 or choward@pjstar.com.
http://www.pjstar.com/stories/090207...UE3RVH.027.php

Caregiving: Do People Need To Divorce To Afford to Care for a Loved One?


Neurotalk.psychcentral.com has re-printed a heart-wrenching story about a couple who cannot marry, titled "In our hearts we are married." The man needs a caregiver and will continue to slowly decline, until his death. The woman wants to be his caregiver, but she can't do that, and go out to make a living, at the same time. The law doesn't provide for a way to pay her, as a caregiver, if she is his wife. So they had their own mock wedding, and plan to legally marry within days of his death.


"Bryan Eklund and Stefanie Emstrom woke up four years ago and decided to get married. It was a bitter cold day.
They walked into their empty church and knelt alone at the altar, exchanged vows with each other and then hummed the wedding march as they walked down the aisle and out of the building.

There were no witnesses. No minister. No wedding dress. In fact, the bride wore dress pants and sturdy shoes in case she had to physically support the groom.

The next time Eklund and Emstrom marry - the legal time - it will be when Eklund is days from death.

That's because the government will pay Emstrom to be a caregiver for Eklund, who has amyotrophic lateral sclerosis (also known as Lou Gehrig's desease), only if they are not married. Spouses in Illinois don't get paid as caregivers, but the question of pay for spouse caregivers is part of a national debate."

Read this story, by Clare Howard of The Journal Star.
http://www.mindingoureldersblogs.com...ving-do-p.html