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Gazette Premium Content Alzheimer's disease takes its toll on Colorado Springs victim and family

4 photos photo - Norma Robinson reads a story from a magazine to her husband of almost 39 years, John Robinson, Wednesday, July 2, 2014. Although John has Alzheimer's and Dementia and can still do some things by himself, he has trouble initiating activities and mostly shadows Norma, who has taken up the role of his caretaker. "I like to read to keep him mentally active," Norma said. "We need to do whatever we can to input so he has some things in there to keep processing." Michael Ciaglo, The Gazette + caption
Norma Robinson reads a story from a magazine to her husband of almost 39 years, John Robinson, Wednesday, July 2, 2014. Although John has Alzheimer's and Dementia and can still do some things by himself, he has trouble initiating activities and mostly shadows Norma, who has taken up the role of his caretaker. "I like to read to keep him mentally active," Norma said. "We need to do whatever we can to input so he has some things in there to keep processing." Michael Ciaglo, The Gazette
by Emily Donovan emily.donovan@gazette.com - Published: July 7, 2014

"Lovely" and "wonderful" were John Robinson's favorite words even before the diagnosis.

His wife, Norma, asked if he remembers a bicycle tour through Vermont.

"Lovely," John said.

John, 71, has midstage Alzheimer's disease, a form of dementia that is the sixth-leading cause of death in the U.S. He follows conversation and responds politely when Norma asks mostly yes or no questions, but there's a disconnect between his brain and what he's able to say and do.

When he does talk, his words don't always make sense.

"What did you have for lunch?" Norma asked.

"Wonderful," he said.

After 38 years of marriage to the retired Army colonel, Norma, 64, is now a caretaker as well as a wife. The Colorado Springs couple skied, road-tripped, attended their daughters' dances, horseback riding and gymnastics meets, and hosted six international exchange students.

Now, Norma keeps John "engaged to the amount that he can be."

She started noticing signs that something was different in fall 2011. Calculating tips at restaurants in his head became hard for John. He'd read a chapter out of Winston Churchill's "The Second World War" but was unable to tell her what it was about. He started having trouble making everyday decisions. Driving became dangerous.

And John stopped initiating conversations.

In February, John was diagnosed with Alzheimer's disease. He may look as healthy as ever, but he can't communicate, remember or move like he used to.

When not at one of his day programs, John spends afternoons playing frisbee at the park near his house or sitting at a table with an in-home caretaker to keep him mentally active.

He fills out trivia books and looks at pictures of famous historical people. John says if he remembers John F. Kennedy or Princess Diana, and the caretaker talks about what that person did.

They play Bananagrams and read newspaper headlines. The caretaker writes a few sentences out with a black pen on a spiral notebook, and John copies the letters in all capitals above with a pencil.

A 250-piece jigsaw puzzle is too challenging, but 60 pieces is too easy.

It's becoming harder for him to spot the six differences in the "Hocus Focus" cartoons.

Although she appreciates John's remaining strengths and involvements, Norma has lost a partner with whom she can really talk.

While John is at his weekly hour of volunteering at their church, Norma walks downtown alone.

Recently while he was at Bible study, she read and had coffee and croissants at La Baguette for alone time. Listening to the water fountain near the statue and flowers in the Grace and St. Stephen's Episcopal Church garden helps her relax.

One of Norma's big challenges now is patience. John has no sense of time.

John needs constant reminders. Even if she has laid out clothes on the bed, John might try to wear black dress shoes to the gym.

Norma has to know where John puts his phone, wallet, glasses and sunglasses at all times.

John always shadows Norma at home. When she needs space, she'll turn on the radio or television for him.

"Sometimes I get really tired," she said.

Facing these challenges, Norma outlined her goals. She has always been a planner and listmaker.

She maintains John's dignity. John is and has always been a gentleman, she said.

She takes advantage of Alzheimer's resources.

They keep physically active.

And she appreciates each moment of the day.

They'll do as many things together as they can for as long as possible. They walk their neighborhood every day. They play tennis, bouncing the ball back and forth without keeping score.

John's balance is reduced, so he has trouble stopping once he gets momentum and has to use hiking poles on downhill hikes. Still, they skied for five days this past season, with Norma leading the way downhill slowly.

"We met at Sno Jets Ski Club," she said.

"No," John said. "Sno Jets." Sometimes his "no" and "yes" are mixed up.

"He still has the potential to surprise, which shows that maybe he's thinking about more than he can actually express," said Ann Marie Miller, the older of their two daughters.

Miller, 30, lives in O'Fallon, Ill. She gets excited if John says, "Hey, kiddo," like he used to call her. Miller said John will see a baby picture and sometimes identify her 20-month-old daughter, Piper.

John watches protectively if Piper is about to run into a table or if the dog is about to bump into her.

She said it's important to keep her father engaged in the conversation, even if he doesn't say much while sitting in the living room together after Thanksgiving dinner.

Miller wishes she could talk and joke around a campfire with her dad. She wishes she could go back to the time when John was who her dad used to be.

Miller doesn't know how long it will be until he doesn't recognize her at the next reunion trip. Still, even late-stage Alzheimer's patients have occasional clear, lucid moments.

Norma said that's really rewarding.

"It makes me appreciate even more when things do work right," she said.

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Resources

Local Alzheimer’s help recommended by Norma Robinson:

• Alzheimer’s Association

• University of Colorado at Colorado Springs Aging Center’s Aging Families and Caregiver Program

• Pikes Peak Council of Governments Area Agency on Aging

• North End Adult Day Care Center

• Voyages Adult Day Center

• Long-term care insurance

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