Dementia support group marks 25 years

By Errol Castens/NEMS Daily Journal

For support
– The Alzheimer’s Support Group meets at Azalea Gardens in Oxford, usually on the first Monday of each month, at 7 p.m. For more information, contact Dr. Jo Ann O’Quin at (662) 915-7199 or joquin@olemiss.edu.
– Dianne Arnold is a trainer and counselor for caregivers through the Department of Mental Health, Division of Alzheimer’s and Other Dementias. Contact her at (662) 846-5335 or dianne.arnold@dmh.state.ms.us.

OXFORD – Few people would aspire to be a member of Oxford’s Alzheimer support group, but many participants can’t imagine life without it.
“Here, you realize, ‘I am not alone,'” said Dr. Wilbrod St. Amand, a retired professor who has been a caregiver for a friend and three family members, including his wife, through their inevitably fatal battles with Alzheimer’s. “Something comes up, and you see these heads nodding. There’s comfort in knowing you are not alone in having to face this problem.”
For 25 years, former and current caregivers of people with dementia have gathered monthly in Oxford to offer each other solutions and support – most recently at Azalea Gardens retirement community. Its quarter-century of mutual help makes it the longest continuously active group of its kind in the state, and possibly in the nation.
“This started as a community education event in 1984, when we were just learning about the disease,” said founder and facilitator Dr. Jo Ann O’Quin. “Then I started meeting with caregivers. They are the experts; I have learned so much over the years from each of them.”
Real help
Topics of discussion among O’Quin and the caregivers run from mundane to technical to hilarious. Recently they have included bed warmers, wheelchair alarms, how to get a diagnosis, and how to have a dementia patient give up driving.
One woman told of the excellent geriatric psychiatric care a family member with dementia had received in a most unexpected small-town hospital.
When one caregiver confessed a fear that she might be developing dementia herself, another jokingly assured her that stress alone can cause forgetfulness, too.
“You don’t have Alzheimer’s – just ‘part-timer’s,'” she chuckled.
Meetings sometimes feature a brief presentation by one of O’Quin’s graduate students or a professional with a specialty in geriatric care.
Sometimes members simply share the heartaches that come with watching a loved one essentially fading away. One woman told of showing her father a picture of the two of them together.
“He said the lady in the picture was his mother,” she said softly.
Another woman acknowledged her gratitude for a fatal stroke that took her husband before his dementia became profound.
“He was easy to deal with,” she said. “I thank the Lord for his sake and my sake, since it had to happen, that we missed the worst part of Alzheimer’s.”
Many people, however, are years into tending the needs of a dementia patient before admitting how difficult it has become – even before recognizing that an actual disease may be involved.
“Sometimes caregivers have to hit bottom before they’ll look for help,” O’Quin said. “Just this week someone told me they had hit a real roadblock in dealing with a loved one and weren’t sure where to turn.
“No one understands dealing with dementia unless you have lived that 24-hours-a-day responsibility.”
A family of diseases
Alzheimer’s is only the best-known of several brain diseases that share some symptoms and have similar results – progressive mental incapacity and eventual death.
While some dementias, including Alzheimer’s, can only be positively identified by autopsy, the debilitation they cause becomes increasingly apparent in the lives of patients and their families.
One of the first things O’Quin recommends for newcomers to the support group is “The 36-Hour Day,” a book whose title reflects the progressively encompassing nature of caring for a person with dementia.
The 331-page volume describes dementia and its causes, addresses independent living and problems in daily care, and discusses medical problems, mood and behavior problems, financial and legal issues, nursing homes and caring for the caregiver.
St. Amand said one vast difference between dementia care now and when he and his wife, George Anne, were among the first members of O’Quin’s new support group 25 years ago, is a different public awareness.
“For many, many years we just didn’t talk about it,” St. Amand said. “It was left in the background, and it was viewed somehow as somebody’s fault. … But times have changed, and we can talk openly now about the dementias.”
Zekie McKenzie, whose husband, Neil, was diagnosed with Alzheimer’s some 10 years ago and now lives in the Mississippi Veterans Home in Oxford, agreed. She said the affliction of President Ronald Reagan, actor Charlton Heston and politician Sargent Shriver with the disease was a public service of sorts.
“These prominent people who have come out acknowledging it have helped all of us,” she said.
Suffering, accepting …
To members in the throes of the struggle with dementia, the group is a godsend.
“People ask me how I’m doing,” said Frances Laird, whose son, Eddie, was diagnosed with early-onset dementia at age 49. “Those who know how I was when I came to this group a couple of years ago don’t really believe me when I say I’m fine, but everything that we can do, we’re doing. He’s doing the best he can, and God is good.”
Several members stay active in the Alzheimer’s support group even though their loved ones with the disease have passed on. They find comfort not only in the friendships they’ve forged in struggle, but in sharing insights and sympathies. One member even calls it his “once-a-month church.”
Another outgrowth of the support group is a sculpture on the grounds of the University of Mississippi Museum that symbolizes the loss that Alzheimer’s inflicts and the acceptance it requires.
Sculptor Roy Tamboli created a massive abstract called “Bardo of Rose” to honor his mother, Rose, who took care of her husband and Roy’s father, Mario, until he died of Alzheimer’s five years ago.
St. Amand bought the sculpture and had it placed on the Ole Miss campus to honor O’Quin for her long service to families impacted by dementia.
Roy Tamboli described the broken steel circle as representing his once-strong father, its gap the losses of memory and relationship that came with his disease. The smaller twists of steel that reach across the gap were his mother’s struggles to serve and love, and the glass ball atop is “the joy, the growth, the clarity that eventually come from intense suffering.”
… and fighting back
Even as caregivers learn to accept the fate of their loved ones, many also have been active in supporting dementia-related research and services.
St. Amand was named the state’s Caregiver of the Year in 2009, both for the care he provided to three different family members with Alzheimer’s and for continuing to share his insights with those still in the midst of the struggle.
Dianne and Bill Arnold cared for her father through his last years with Alzheimer’s. Dianne now applies the experience in her work as a trainer with the Division of Alzheimer’s of the Department of Mental Health.
“I also do counseling with caregivers or with people with early-stage Alzheimer’s,” she said. “The counseling is free; our training is free; the materials we give out are free.”
Bill Arnold, Dianne’s “No. 1 volunteer,” organized Oxford’s Memory Walk in October. Most members of the support group participated, along with hundreds of other people. The event raised nearly $30,000 for Alzheimer’s research and assistance – more than any other in the state outside of Jackson.
O’Quin is gratified by such outgrowths from the group.
“We need to be advocates to continue awareness of the resources and support available for caregivers,” she said. “We also need to direct research dollars toward learning what causes dementia-related disorders, how to treat them and, most importantly, how to prevent them.”
Contact Errol Castens at (662) 281-1069 or errol.castens@djournal.com.