Family's crusade against memory-stealing disease is personal

4/25/2014

By ANGIE HAFLICH

By ANGIE HAFLICH

ahaflich@gctelegram.com

For Skip Mancini, the subject of Alzheimer's hits close to home. Her father, R.F. Lee, fought the disease for about eight years, putting her in the position of taking responsibility for his care.

"And it will just wear you down. It will really wear you down to have to be in that position," Mancini said.

Her mother, Lorene "Shorn" Lee, also suffered from a milder form of dementia, which culminated in Mancini having to move her to a long-term care facility.

"Everybody is different, every person is different, every situation is different, and every family has a different situation to deal with," Mancini said.

It is from her own personal experience with the disease that Mancini and her husband, Vincent Mancini, established the Lee Fund about a year ago to provide 19 counties in southwest Kansas, including Clark, Meade, Stevens, Morton, Stanton, Grant, Haskell, Gray, Ford, Hodgeman, Finney, Kearny, Hamilton, Greeley, Wichita, Scott, Lane, Seward and Ness counties, with greater access to presentations and resources to help deal with the disease.

"I just want to make sure that the people in our 19 counties know that, if you're in that situation, there's somebody who can tell you where to go next. And it doesn't cost you anything. It doesn't cost any of these organizations. Any of the services that we've done this last year, and that we're going to be doing this year — the bill's already been paid," Mancini said.

Over the past year, Mancini and Jan Evans, outreach coordinator for the Central and Western Kansas Chapter of the Alzheimer's Association, have been holding in-services and presentations for the region. The Lee Fund has sponsored all the presentations so the expense doesn't affect hospital, nursing home or other facilities' budgets.

Last week, Evans and Craig Davis, development director of the Alzheimer's Association, visited several organizations in Garden City, including St. Catherine Hospital, Downtown Vision and Garden City Community College, to discuss ways to bring even more awareness and support to the community.

Davis said studies indicate that the growth in Alzheimer's cases is expected to increase exponentially due to the size of the baby boomer generation. He believes that will have far-reaching impacts, not only on caregivers, but also on the healthcare industry, business community and others.

"A lot of people don't realize all of that impact. Our national organization and others are saying that this potentially could exponentially increase as far as dollar and value to crush the health system in 25 to 50 years," Davis said. "So it's scary to see those numbers rise."

He said Congress recently awarded the Alzheimer's Association with an additional $130 million for research due to this projected growth.

"We don't have all the answers, so that's why we need more minds together to collaborate, be creative and thinking outside of the box of, 'OK, what can we do to maybe consider creating a western Kansas summit of sorts, that would reveal memory loss challenges?'" Davis said.

Evans believes there are three crucial areas that need to be looked at when it comes to Alzheimer's.

"It's not only the education for the professional, but the awareness to the public and having the caregiver and their family know, 24-7, we have an 800-number that they can call which will generate a care consult if they want it, and it will generate the resources we have for them," Evans said.

Mancini is pleased with the progress they have made in the past year, but feels there is always more that can be done.

"We're facing an uphill battle with this disease, so we've got to pay attention to it because it's going to affect everyone in the country, eventually. And so, Vincent and I decided we'd like to renew the Lee Fund, keep it going, and that gives us the chance to bring these folks out and do more, bring the services out to western Kansas, which was the whole concept of it. Instead of one or two nurses from a hospital and nursing home getting to go back east and do some training, we would bring the training here and make it available not only to medical people but also to family members."

Those in southwest Kansas who have been affected by the disease but have been unable to attend one of the local presentations can call the Alzheimer Association's peer-to-peer support line at (800) 272-3900 or (316) 267-7333, or they can visit www.alz.org.

The Alzheimer Association's biggest fundraiser, Walk to End Alzheimer's, takes place on Sept. 20 at Stevens Park. To form a team, contact Evans at (317) 267-7333 or go to www.alz.org/walk. There are also walks taking place in Liberal, Colby, Dodge City and Hays.

A support group for those in the area who have been affected by the disease meets on the third Monday of every month at 2 p.m. at Garden Valley Retirement Village's conference center, 1505 E. Spruce St.

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