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Hampton man pens Alzheimer’s help journal

Special Photo: Hampton resident, Terry McAfee, and his mother, Margaret McAfee, of Riverdale, speak to each other daily.

Special Photo: Hampton resident, Terry McAfee, and his mother, Margaret McAfee, of Riverdale, speak to each other daily.

Hampton resident, Terry McAfee, recalls the time when he first recognized his mother had dementia.

McAfee said his mother, Margaret McAfee, exhibited signs of memory loss well before she was officially diagnosed with Alzheimer’s disease in 2005.

“She was coming to our house to visit us, from Riverdale over to Hampton, and she got lost,” McAfee said. “It was a place she was familiar with. But that particular day, she got lost. So, she just went back home.”

McAfee said he spoke with his mother about the incident by phone, and went to her house to pick her up for the family occasion at his Hampton home.

“We didn’t think much about it at that time, because it was the only time it ever happened,” he said. “Then, it just started getting worse. She stopped driving her car altogether in 2007.”

Alzheimer’s disease is a form of dementia that gradually worsens over time, affecting one’s memory, thinking, and behavior, according to Carol Steinberg, executive vice president of the New York-based Alzheimer’s Foundation for America (AFA).

Steinberg said the effects of the disease linger, and can worsen until death, impacting some families for as many as 20 years. She said the average Alzheimer’s patient lives eight years after diagnosis.

“It’s an enormous toll on the caregivers,” said Steinberg, who noted that her father was diagnosed with Alzheimer’s disease. “There are enormous emotional issues that accompany dealing with the disease,” she said. “It’s basically a 24-7 job, especially as the disease progresses. As the disease progresses, caregivers are taking care of all of the family member’s needs.”

McAfee said his mother, now 85 years old, has been able to live independently in Riverdale with the support of her friends and family, who check in on her a few times a day.

McAfee, 64, is one of her four sons, who help their mother with day-to-day chores. He divides his time and attention between his family — he has two adult children — and his aging mother.

Years ago, the son and father devised a way for his mother to stay connected with her friends and family, while easing the burden on her many caregivers. He asked his mother to keep a journal, and log her daily activities, which helps him and his siblings to keep track of her meal times and medications.

“We first started in 2006 with note-taking — it was her basically writing things on a notepad,” McAfee said. “When she doesn’t have that in front of her, it’s hard for her to remember what she did during the day.”

McAfee said he evolved the idea into a more organized version of a care planner in 2008. His care planner is entitled, “The Conversation,” and is a journal that asks specific time-oriented questions.

The son said the journal prompts his mother to be able to answer things like when she ate breakfast, or when she took her medication, or who she talked to that day.

While most of the journal is a calendar, with questions and blank spaces for notes, the booklet also includes an introduction, dedication, acknowledgment, and helpful tips and hints on Alzheimer’s disease from McAfee’s perspective.

“The goal in the journal is to keep her connected,” McAfee said. “It’s an activity book, she fills out and reads on a daily basis, and she stays connected with her children and her friends.

“Somebody looks at it [the journal] everyday,” he added. “There’s always somebody that goes and spends time with her on a daily basis.”

The matriarch has responded well to the journal, though she sometimes questions the need for the journal, according to McAfee.

“It’s just amazing what it does,” he said. “The doctor is amazed that she has been able to stay in her home. It’s not OK, if they can’t remember what time they got up, and it’s not OK, if they don’t know whether they ate. It’s not OK, if they forget to take their medicine.”

McAfee acknowledged his greatest fear is that his mother loses contact with her family and injures herself. “If we weren’t doing something to stay connected with her, she would lose her memory completely, and may end up taking her life,” he said.

McAfee said he is promoting the journal, “The Conversation,” now in North Georgia, making an appearance at the Fannin County Public Library in Blue Ridge, Ga., on Jan 11, from 1 p.m., until 3 p.m.

The Hampton man said he wants the book to help others organize their loved one’s lives and stay connected. He said he also hopes it will help keep those suffering from Alzheimer’s disease mentally stimulated.

“It’s a progressive disease,” McAfee said. “You have to keep a person active and stimulated to slow the progression.”

AFA’s Steinberg agreed that mental exercise can be beneficial. “What’s good for the heart is good for the brain,” Steinberg said. “It can slow the progress. For someone with the disease, or without the disease, things like mental exercises and socialization. And moreover, it could help improve quality of life.”

Steinberg said caregivers, too, face social isolation and guilt in the process of treating and dealing with Alzheimer’s disease. “I think the biggest fear is uncertainty and not really knowing what is next,” Steinberg said. “That is why it’s important for caregivers to really become as educated as they can about the disease and reach out for support as much as they can.”

Care planners, and the information the journals contain, can be helpful to primary caregivers, extended family members, and doctors of Alzheimer’s patients, the Alzheimer’s Foundation spokeswoman said.

“It’s often the family caregiver that speaks to the doctor about the person with the disease,” Steinberg said. “The more information you can bring to the doctor, the more the doctor can see if treatment options need to be changed, or can make suggestions about behavioral interventions.”

AFA, founded in 2002, has a network of 1,600 member organizations nationwide that provide hands-on programs, resources, and services to families impacted by the disease. The organization also has access to support groups of families dealing with Alzheimer’s.

“It helps to connect with organizations like AFA and other caregivers,” said Steinberg. “Caregivers should not face this disease alone.

“I think for people who are not dealing with it right now, it’s always a good idea to know the warning signs,” she continued. “It’s really important that people notice the signs, and it’s important not to bury your head in the sand. And remember, there is a person inside them [Alzheimer’s patients].”

Steinberg noted that there is a limited supply of care planners available through AFA, by calling the toll-free help line at (866) 232-8484. To learn more about the foundation, visit www.alzfdn.org. For more information about “The Conversation,” message Kokopelli1010@comcast.net.