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http://www.postcrescent.com/apps/pbcs.d ... 00575/1979

Posted March 20, 2007

Caregivers must take time for their own needs

Serving as a loved one's caregiver takes a toll and requires a healthy balance

By Cheryl Sherry

Post-Crescent staff writer

Michelle, Todd and Kim (Holmes) Lewis knew they'd never be able to give their mother, Arlene, all she had given to them over the years. But when Mom was diagnosed with colon cancer in 2003, the Oshkosh family wanted to do whatever they could for her.

"When the world didn't make sense and I didn't understand God's head in all of this, I knew I had to trust his heart," said Michelle Lewis of the two-year journey. Arlene Lewis died days after Christmas 2005.

While the role of a caregiver is to provide basic care to a person who has a chronic medical condition that either lasts a long period of time or doesn't go away, assuming that role many times can leave caregivers sad, frustrated and, at times, angry.

Caring for the caregiver is the subject of a daylong workshop for students, caregivers and professionals to be held March 31 at High Cliff Supper Club in Sherwood. "Surviving the Super Caregiver Syndrome" will feature Terry Wise, 2005 National Mental Health Award winner, who will address issues related to caregiving, anticipatory grief, grieving after loss, depression and restoring emotional health. Wise chronicled a near-suicide attempt following the death of her husband from Lou Gehrig's disease in her book, "Waking Up: Climbing Through the Darkness."

"It is critical to take care of yourself when you are a caregiver because if you take care of yourself, you are taking care of the person who is dependent upon you and it benefits both people," Wise said by phone. "I can't impress that upon people enough.

"A lot of people don't realize there is a direct connection to the burdens caregivers carry and the quality of care a patient receives. If you take care of yourself and reduce your burdens and keep a healthy balance for yourself … then you are going to be in a better position to take care of your loved one."

Kim Marheine, program director for the Alzheimer's Association, agrees, saying it is not only the person who is diagnosed with an illness who is their client, but also the caregiver. Support groups were the foundation of the association before it became a formal organization.

"It's like they tell you when you fly, if you lose oxygen, put your own mask on first before assisting someone else," Marheine said. "And that's what we tell caregivers. You cannot be an effective caregiver unless you can take good care of yourself first."

When Karen Much's mother, Ruth, 82, was diagnosed with Alzheimer's in 1999, the family opted for home health care until money ran low in 2003. Since then Ruth has lived at Colony Oaks Care Center in Appleton.

"I took a six-week class on caregiving that was rather intense when Mom was at home yet," the Hortonville woman said. "The one big thing I learned out of that is you have to take care of yourself. You have to keep yourself in a sane frame of mind or you are no good to the person receiving the care. And you have to stay healthy."

Merle Hazard's husband, Rusty, was diagnosed with lung cancer in October 2004. He spent his final six months at home under her care.

"It always takes a toll on the caregiver, and yes, it took a toll on me," the Appleton woman said. "We probably were fortunate because we were both retired and I didn't have to work or care for someone else at home. It is really important to have support because it is so draining and so fatiguing. I think just having the support system of having others who worry about you for you forces you to go and get some relief, to go out and do things."

Caregiving, Wise said, starts to define you when it is all consuming.

"As a person's needs increase, your capacity to handle them is decreasing. So there is this inverse relationship between your energy and the person's needs. So it's really a tough thing with what is commonly known as caregiver burnout," she said.

When Arlene Lewis' cancer had spread and chemotherapy was no longer an option, more than anything she also wanted to be at home.

"We knew her heart's desire was to be in a comfortable environment surrounded by her family," Lewis said. "In the time our mom had left, whether that was weeks or months, we wanted to make the most of it. Hospice came alongside our family and ministered to us all."

After her mom died, Lewis didn't think she could go on.

"After the person dies, people are so there for you; I had a wonderful support system. But after a month or two that support system kind of dwindles away. It's not that people don't care, but they are scared to mention your loved one. It's like the elephant in the room. That was the hardest thing for me. I remember looking around and thinking my whole world stopped and everyone else kept going. You are alone in so many aspects of alone."

Sometimes, Marheine said, people are not being insensitive to the caregiver's needs or isolating them but rather trying to move them into the knowledge that life does go on.

"What a lot of people don't think about is the aftermath of being a caregiver; it is not as if the second the person dies you start to replenish your energy," Wise said. "One of the phenomena that plagues caregivers also plagues veterans coming back from the war. When you are thrust into an environment where you are trained or train yourself to be composed and to put your emotions over here so you can do the job over there, then you take that person out of that environment. It takes the person a while to have a normal flow of emotions."

For Lewis, the positives of caring for her mother always will outweigh the hard times.

"There's no greater gift I could have given my mom," she said.

Cheryl Sherry can be reached at 920-993-1000, ext. 249, or csherry@postcrescent.com.

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