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Life with Alzheimer's: Ed and Sally Sanders

They still enjoy good things in life, despite the disease.

Wednesday, September 19, 2012 - 12:01 am

Sally Sanders' tall, slim frame leans against the wood countertop of the family room wet bar christened “Sally's Pub.” She looks every bit the picture of a confident woman ready for nine holes of golf or lunch with friends.

Her smile and healthy tan could put her on the cover of a fitness magazine or an advertisement targeting women in mid-life, and defy her age of 74. But when she gets her guest a glass of water, then a few minutes later has an uncertain look as to what to do with the drink, it is clear something is not quite right.

About four years ago, Sally's memory began showing marked decline. Prior to that, “She had a fantastic memory, much better than mine,” says Ed Sanders, who has been married to Sally for nearly 52 years. They met in high school in northern Illinois and have been nearly inseparable since. When the two look at each other, their devotion is almost palpable.

“I could remember all the things from a long time ago, those things and friends in school, but I can't remember … can't remember,” Sally says while looking across the patio table at Ed for some help.

“You can't remember things that are more recent,” he says, filling in the blanks with a calm demeanor.

Assessment by the family doctor and a neuropsychologist confirmed she has some form of dementia. When Sally is out and about and someone wonders why she is forgetful, she tells them, “My brain doesn't work like it used to.”

While a diagnosis of dementia is not something anyone desires, the Sanders are quick to point out there is still a lot of living to do — and they're relishing every day.

After the diagnosis they educated themselves through the Learning Together program for families sponsored by the Alzheimer's Association. Then they joined an Alzheimer's Support group for early-stage individuals and their spouses or caregivers.

They've invited other couples to the group who are on the same journey. With one couple, who they've known for many years, it is the man who has dementia. The two couples enjoy visiting in each other's homes. Ed used to work with the other man, and Sally and the other woman worked together, so the foursome talk about shared past experiences.

“We can reminisce from 20 years ago,” Ed says.

For many men, particularly those past 60, joining a support group is not something they ever pictured themselves doing. But Ed says the groups are a lifeline. He also attends one for caregivers only held at the Waynedale Branch of the Allen County Public Library.

“We laugh a lot,” Ed says of group participants. But he admits tears are present now and then, too.

One day he was home with Sally and feeling overwhelmed with the challenges still to come.

“I was sitting here on the patio, tears streaming down my face. Sally looks over. She's watching me cry and is just kind of looking at me, like she's bored,” Ed recalls. “She finally gets up and says she going inside to watch TV or get the paper or something.”

It's the silver lining. The affected person, even in the early stages, can be somewhat insulated from the turmoil the disease creates.

Ed and Sally find help on the Internet, too.

Because she's read how exercise can slow progression of the disease, Sally works out regularly. She also sees an integrative medicine specialist who orders specialized lab tests not done in routine blood tests. The doctor has her thyroid and certain other medications specifically compounded for her.

Sally also works her mind by playing games on a handheld Nintendo DS and faithfully does the word scrambles and word search puzzles in the newspaper and in paperback books. On a recent day, she unscrambled every word but one in the newspaper puzzle. Even Ed couldn't figure that one out.

Forgetting things is frustrating, Sally acknowledges, saying, “Sometimes it makes me mad.” But then her face lights up, and she adds, “This isn't so bad. We still do lots of things.”

Many of those special times include their two daughters and six grandchildren.

Ed concurs life is still very good, noting some diseases or disabling conditions cause agonizing pain, or in the case of a severe stroke or car accident, strike a person down immediately. He advises others who are in their shoes to join a support group and surround themselves with friends and loved ones.

“Keep doing the things you love doing. If you're social before the diagnosis, don't change anything,” he says. “Just because you get this diagnosis, don't drop out. And don't be afraid to tell people what's going on.”