Helping the helpers
HEALTH: Assistance is available for those who struggle to provide long-term care for ailing family members and loved ones.

Noreen Jackson's husband wants a new car. Robert Jackson, 75, won't let go of the idea.

Never mind the truck parked behind the couple's Two Harbors home. What if he wants to go somewhere when his wife is out running errands?

Noreen Jackson knows that will never happen. Seventeen years ago, doctors diagnosed the father of seven with Parkinson's disease -- a disorder that destroys nerve signals and cells. In 1997, he developed dementia, which slowly erases memory and intellect. It also can transform victims' personality and behavior.

Noreen Jackson, a retired nurse, relies on friends and family to help her care for her husband at home, along with twice-weekly visits from health aides. It's exhausting work, but she hopes to avoid the alternative -- a nursing home.

"A lot of it depends on how my health holds up," she said.

A five-hour Saturday conference will provide information for caregivers facing similar challenges. To be held at Fond du Lac Tribal and Community College, it will present information to help family caregivers stay healthy as they make personal sacrifices for their loved ones.

Legal experts, doctors and patient advocates will answer questions and provide tips on managing medications, assessing long-term care insurance, talking to doctors, finding affordable help and taking a break.

"The continued stress of caregiving, even if it's for someone you love dearly, just wears you out," said Mary Alice Carlson, regional director for the Alzheimer's Association.

Too often, caregivers won't request assistance until their own health fails, said Jill Hatfield, director of Carlton County's Alzheimer's disease respite program.

The guilt of leaving a loved one often stops spouses or children from using home health aids or adult day care, Hatfield said. And those who do seek help can become frustrated or depressed as they try to juggle caring for a loved one against work, family or personal interests.

One in six caregivers struggles to balance job demands with helping a friend or relative, a Harvard University School of Public Health survey reported in June.

Nearly 20 percent said that helping with another's medical care strained family budgets. Another 18 percent said caring for a loved one takes away from time once spent on hobbies or vacations.

Caring for Robert Jackson is a 24-hour job. When he wakes at 1 a.m., it's Noreen Jackson who gets up to check on him. At times, he hallucinates.

"It gets to the point that I lay in bed in the morning and think, 'Am I ready for another day?' " she said. "It's like having a child."

About one in four adults help ill seniors remain at home. Assisting those caregivers is considered a growing priority for lawmakers and health care advocates, said planner Cindy Conkins of the Arrowhead Area Agency on Aging.

For Martha Kesti, church members, neighbors, volunteers and family step in to help when she needs assistance caring for her husband, Matt, who suffers from dementia and congestive heart failure.

"We always worked together," Martha Kesti said. "I know how to do a lot of things. I'm very independent. It's just hard when you have to do it all the time."

Demand for such care is expected to skyrocket as baby boomers age, Conkins said. Minnesota's 85-plus population is projected to double by 2020, exceeding 200,000.

Dr. David Spoelhof will speak Saturday about how best to curb drug costs and prevent harmful errors.

Seniors frequently take multiple drugs, which can create health problems when medications aren't used properly, he said. Too often, elderly people don't speak up when a new prescription appears to cause unusual symptoms or cuts too deeply into a limited income, said Spoelhof, a family practice doctor for SuperiorHealth Medical Group in Piedmont Heights.

Seniors, or adults who help manage another's medication, should approach doctors or pharmacists with concerns and a written list of the medications.

Spoelhof stressed the value of writing down instructions, doses and all drugs, vitamins, supplements and store-bought medications to avoid confusion when talking to doctors about problems.

Without a comprehensive list, doctors or pharmacists may not be able to find a drug causing more harm than good. While reviewing a patients' drug list, doctors may find some medications that are no longer needed or substituted for a generic or different dose, which can save customers money.

Experts on Saturday will tackle some of the more complicated legal and medical issues that caregivers face.

"People are fairly desperate for information," said Dale Lucas, managing attorney for the Senior Citizens Law Project in Duluth. Last year, 1,200 people in Northeastern Minnesota's seven counties sought assistance through the program.

Caregivers of all ages struggle to understand the complex legal and commercial options they face in providing long-term medical care or assisting a loved one through a fatal illness, Lucas said. Law Project attorneys explain the necessary legal steps they must take to gain power over finances or treatment decisions for patients no longer able to care for themselves.

Many attempt to put off such decisions, said Lucas, a speaker at Saturday's event. They find it's uncomfortable to talk about dying or an illness that robs patients of their ability to eat, breathe or communicate. For those who don't know what options exist, it can be intimidating to approach a lawyer or professional caregiver looking for information.

But addressing such unpleasant possibilities before they happen can give patients control over their medical care and can help families avoid future legal costs, he said.

MELANIE EVANS covers health care. Call her at (218) 720-4154 or (800) 456-8282 or e-mail her at

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