Alzheimer's program brings national focus to Lowcountry

dlauderdale@islandpacket.comMarch 2, 2013 

  • Memory Matters will be featured on "The Visionaries," to air at 2:30 p.m. and 5 p.m. Friday on SCETV's ETV World channel. It also is available online at www.visionaries.org.

For me, it came with a phone call.

That's when I knew my father wasn't right.

I'd been asked to teach an adult Sunday school class, and I knew Daddy would be my ace in the hole. He knows the Bible so intimately he translated every chapter in rhyming, metered verse to be sung.

I called to run a passage by him and waited for him to gush on for 30 minutes with commentary, cross-references and anecdotes.

Instead, the phone went silent.

It seemed like five minutes passed. He finally said: "Have you got a concordance?"

It hit fast, and hard. His brilliant mind was no longer clicking. It was terribly sad.

This type of scenario is played out in millions of families across America, and there's precious little anyone can do about it.

Alzheimer's disease has no cure.

But on Hilton Head Island, families touched by it have an option so rare that it will be featured this week in a documentary to be aired by SCETV and about 100 public broadcasting stations nationwide.

Cameras will take the world inside the nonprofit Memory Matters building on the north end of the island. The 15-minute segment is part of "The Visionaries" show. It is hosted by actor Sam Waterston, star of "Law & Order," and produced by a nonprofit organization now in its 18th season of profiling nonprofits worldwide to inspire change in society.

"This is a gem," Visionaries executive producer and founder Sam Mosher of Cape Cod told Memory Matters supporters at a preview last month. "You have something that ought to be replicated all across America."

THEIR OWN PLACE

Memory Matters started in 1997 as a grassroots response to the burden dementia places on families. It started at St. Luke's Episcopal Church, then wandered from church to church for years, offering a daycare program so caregivers could get respite.

In 2009, it bought and renovated its own building, where today it offers a social day program five days a week for about 25 people each day. It offers a "Brain Boosters" program for people with early memory loss. It has a caregiver support group, caregiver resources, and training and presentations for the public and other organizations dealing with dementia.

It has been recognized statewide for its strong and accountable board, now chaired by Joan Webster. Executive director Edwina Hoyle oversees a small staff and more than 50 volunteers. Its income comes from fees clients pay (with scholarships available if money is a problem), from three major annual fundraisers, from grants and private donations.

More than 4,000 nonprofit groups sought to be featured by Visionaries this year, Mosher said.

He knew he wanted dementia to be covered for the first time.

"My mother has Alzheimer's, and I have been unable to find a program remotely close to Memory Matters in my region of the country," he said.

They narrowed the nonprofits addressing dementia to 125 that might be featured.

"We chose to come here because this in my mind is one of the best organizations in America," Mosher said. "It's all gut. We're not journalists. We're just storytellers. There's no math going on here."

AGAINST HER WILL

Renèe Ford of Hilton Head said her mother was a meticulous, Type A nurse in what now seems a former life. Then came a day that Marie Everett, now 85, left on a three-week vacation with a cousin without telling anyone.

When her mother got to the point of not knowing where she lived, things changed permanently. Ford's mother moved from Pittsburgh to Hilton Head -- against her will -- to live with Herbert and Renèe Ford.

Memory Matters was involved, even before the move. Everett goes for one half-day and one full-day social program each week. Ford attends the caregiver support group.

"I learn to stay one day at a time," she said. "You have to find humor in it. They're in their world. You can't be in their world. You can't change that. But you can change yourself. You can do something to alter yourself to make it easier for them and for yourself."

She said it requires patience, a daily routine, and calm voices. Things have come full circle for Ford, who now acts as the parent.

"The most important thing is that I still have the ability to be with her and take care of her," Ford said. "These are her ending times, unfortunately, but I am given the opportunity to spend some time with her as she goes through this struggle. I still believe there's a part of her that knows what's going on, and I understand that it is frustrating, but at least I'm there trying to help her and make her as comfortable as possible. There won't be any regrets because I know I will have given her the best life possible."

'AMAZING GRACE'

Mosher said it is important that dementia isn't seen as "something we can fix." He thinks clients should be treated with dignity.

Memory Matters offers them art work, storytelling and creative writing. They have music therapy, pet therapy, yoga and dancing.

Mosher said that with 5.4 million Americans living with a disease with no cure, nonprofits are going to have to inspire solutions.

Visionaries is working an a software application that will soon add layers of information to the video about Memory Matters. With the episode available online, to be seen anywhere at any time, this will be a powerful resource for the world, he said.

One thing no viewer can miss is Lou Ethel Hill standing as clients sit in a large circle. The former nurse sings "Amazing Grace" -- with every word clear and correct.

Cindy Williams said her mother has been a leader in church and community choirs as long as anyone can remember.

"She loves to sing," Williams said. "That's one thing that hasn't left her yet. I don't think that's ever going to leave her."

Follow columnist David Lauderdale at twitter.com/ThatsLauderdale.

Related content:

"The Visionaries" episode 1805A on Memory Matters

Memory Matters

Alzheimer's Association

The Island Packet is pleased to provide this opportunity to share information, experiences and observations about what's in the news. Some of the comments may be reprinted elsewhere in the site or in the newspaper. We encourage lively, open debate on the issues of the day, and ask that you refrain from profanity, hate speech, personal comments and remarks that are off point. Thank you for taking the time to offer your thoughts.

Commenting FAQs | Terms of Service