Alzheimer’s event offers guidance; Ponte Vedra couple epitomizes living with the disease
Jeanette Smith, 72, and Jim Smith, 80, have been married for 50 years. She has been his caregiver for six.
He has Alzheimer's disease and can no longer be left alone or help around the house. He struggles to communicate his feelings.
"It's absolutely a roller coaster, like trying to get hold of a moving target," Jeanette Smith, of Ponte Vedra Beach, said. "One day one way, the next something different."
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But she has persevered with the help of family, friends, neighbors and community resources from the St. Johns County Council on Aging to various national organizations that focus on Alzheimer's and other forms of dementia.
"The most helpful thing first was information," Smith said. "That's probably the most crucial — get yourself educated."
Wednesday the Alzheimer’s Foundation of America will host a free virtual educational conference for Florida residents to kick off its 2022 national Educating America Tour. The conference will feature health, caregiving and long-term care experts who will take questions from participants.
"Knowledge is a useful and powerful tool that can help make any situation easier to navigate, especially something as challenging as caring for a loved one with Alzheimer’s disease," President and CEO Charles Fuschillo Jr. said. "Connecting families with useful, practical information and support that can help them now and be better prepared for the future is what this conference is all about."
Personality changes were the first clue
Alzheimer’s disease, the most common form of dementia, is a progressive brain disorder that impacts memory, thinking and language skills and the ability to carry out simple tasks, according to the foundation. Dementia is a term used to describe symptoms such as loss of memory, loss of judgment and other intellectual functions.
About 5.8 million Americans, including about 580,000 people in Florida, are currently living with Alzheimer’s disease, according to the foundation.
Jeanette and Jim Smith moved to Ponte Vedra Beach in 2012 after he retired from the corporate consultant career that had taken them to multiple locations across the country. Two years later Jeanette began to notice changes in his behavior.
"He wasn't remembering things. … Not like when you lose your car keys, but significant stuff," she said. "He was just a little bit off from what I know of him, his personality."
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They quickly scheduled a visit to their family doctor. Ultimately, neurological tests revealed dementia; they found out later it was Alzheimer's.
After receiving the diagnosis, the couple went to their car, "just sat there, hugged each other and cried. He said, 'I don't want to die, I don't want to die'," Smith said.
There is no cure as yet, but there are medications that can slow down the progress of the disease. Jim Smith takes two such drugs; his wife is unsure if they still work but fears him getting worse if he stops taking them.
Since the diagnosis, he has undergone "tremendous decline," she said. He still knows her and his family — they have two sons and five grandchildren who live out of state but visit as much as they can — and the neighbors. But his language skills have virtually evaporated.
"He doesn't have the proper words," Smith said.
Determining whether he is hungry, in pain or just wants to help her fold the laundry requires "constant ferreting out," she said. Sometimes she can determine his needs or wants when he points or stares at something. Sometimes she cannot figure it out and can only give him a vague answer: "We'll have to see about that."
"I can't ask him," she said. "He gets upset."
He dislikes talking about Alzheimer's, although his wife sometimes sees him reading about it in the AARP magazine.
"He has always been a man of denial," she said. "He doesn't want to focus on it."
'Create a village' of help
In addition to educating herself about the disease, Jeanette Smith has also educated herself about the community-support resources that are available.
Her husband goes to the Council on Aging's day center two days a week. He has also participated in its Integrative Memory Enhancement Program, or IMEP, which minimizes the progression of memory loss or dementia through specific cognitive and physical exercises designed for seniors.
There are helplines to call, support groups that use Zoom so she doesn't have to leave her husband and respite caregivers when she needs a break. Another option is hospice palliative care.
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"One of the most important things is you have to have help. … You have to create a village," she said. "Almost daily, I get overwhelmed — it's such an overwhelming task — but you need to take care or yourself."
Maintaining her own health and keeping her own spirits up can only benefit her husband, she said. If she is cheery, he is more likely to be as well.
"He will reflect my attitude," she said.
Smith focuses on something her granddaughter tells her: "You're not going down."
bcravey@jacksonville.com, (904) 359-4109
ALZHEIMER'S FOUNDATION OF AMERICA EDUCATING AMERICA TOUR
The free virtual conference will be 10 a.m. to 12:45 p.m. Wednesday, focusing on healthy aging, a variety of Alzheimer’s-related topics, caregiver tips and strategies and local resources. For more information or to register, go to alzfdn.org/tour. People who cannot participate in the virtual conference or have immediate questions can connect with licensed social workers seven days a week by calling the foundation's helpline at (866) 232-8484 or web chatting at alzfdn.org by clicking the blue and white chat icon in the right-hand corner of the page. The web chat feature is available in more than 90 languages.
OTHER AREA RESOURCES
• St. Johns County Council on Aging: coasjc.org, (904) 209-3700
• Alzheimer's Association of Central and North Florida: alz.org/cnfl, helpline (800) 2723900
• City of Jacksonville Senior Services: coj.net/departments/parks-and-recreation/senior-services, (904) 255-5400
• ElderSource: myeldersource.org, helpline (888) 242-4464
This article originally appeared on Florida Times-Union: Alzheimer's event kicks off in Florida; Ponte Vedra couple an example
