Editor’s Note: This is the second of a five part series looking at the effects of Alzheimer’s in Arizona. Read the first part here.
PHOENIX – Whether it’s heredity, the environment or diet, doctors still do not know the exact cause of Alzheimer’s, but they do know that the diagnosis is never expected.
“Nobody ever plans to get Alzheimer’s,” Dr. Marwan Sabbagh, director of Barrow’s Neurological Institute on Alzheimer’s and Dementia, said. “They’re never ready for it.”
Sabbagh said the disease is, “essentially a theft. You’ve planned on retirement your whole life and (Alzheimer’s) basically just steals it.”
Not long ago, the mental mugger began stealing precious moments from Bob and Diane Stephen’s life.
Still capable of greeting guests at the door, Bob, a retired Air Force veteran, is friendly and reminisces fondly about his time as a secret code operative during the Cold War.
“I studied six hours every day for nine months learning Korean,” Bob said, effortlessly repeating the greeting for “Hello, how are you?” in Korean.
Bob was naturally gravitated to Diane, a high school math teacher, while playing in bridge tournaments in the 1990s.
Although they were first bridge partners, they became partners for life 14 years ago. Diane said their lives became so in sync that they rarely missed a beat, whether it was playing cards or creating meals in their cozy kitchen.
“We had things orchestrated,” Diane explained as she stood in the narrow space between two counters. “I’d be on one side and he’d be on the other and we’d coordinate as we cooked.”
Then, one day, Bob stopped syncing. Diane said she thought, “I’m pretty sure something’s up, but I could not say absolutely.”
The next week, Bob — an expert bridge player — asked a child-like question about the game, Diane said.
“Somebody had made a very standard bid and he goes, ‘Hmm, what does that bid mean?’” she said. “The gal explained it to him and he goes, ‘Wow, I’ve never heard of that before!’”
That incident sent Diane scrambling for answers. Several doctors and lab visits later revealed Bob’s brain was being robbed by early stage Alzheimer’s.
Bob said of the moment his doctor told him of his prognosis, “My dad lived to be almost 90 and I know he had some kind of Alzheimer’s.”
His bravado is concealed, but Diane will not forget what happened a few weeks later, when she decided to go for a day of playing bridge alone.
“I came home around 5 (p.m.) and the vibe of the house was different,” she said. An hour later, she said she walked in their closet and found Bob’s entire side of the closet empty. He had been missing since 8 that morning.
To this day, Diane calls it, “The worst day of my life.” By 7 p.m., she said she filed a missing persons report with police.
“(The police) asked me, ‘Did you have a fight?’” she said. “I said, ‘No! We don’t fight.’”
After she did not hear a word the next morning, Diane said she began to think the worse.
“Bob had a tendency to tell anyone who would listen about his diagnosis,” she said.
According to Nicole Cruthers, a caregiver educator with the Hospice of the Valley, said oversharing is a common symptom of Alzheimer’s and dementia.
“People with dementia often lack the insight,” she said.
Diane said she checked the bank to see if Bob had stopped for money then the pharmacy to see if he had the insight to pick up his heart and Alzheimer’s medicine.
She learned quickly what many family members usually learn over days living with an Alzheimer’s patient, “They would not tell me anything without power of attorney.”
Terrified and beyond frustration, Diane finally got a call from Bob’s daughter two days after he went missing, saying, ‘He’s here and he doesn’t want to talk to you.’”
While she admits that broke her heart, Diane said she understood that Bob was frustrated, too.
“I needed to get away,” Bob recalled of that day. He had driven 1,300 miles to his childhood hometown in Kansas City.
“My daughter came out and went, ‘Oh, Dad!’” he said. “She was crying because she was worried about me.”
A few days later, Bob was back home in Phoenix. Diane said she has forgiven him, but she will likely never forget those three days.
“I don’t think he’s ever really understood the amount of pain that cost me,” she said.
Patients with dementia and Alzheimer’s often exercise poor judgement, with many thinking they are perfectly fine when they are not, Sabbagh said.
That was two years ago. Since then, Bob and Diane stay vigilant with his Alzheimer’s diagnosis, including encouraging him to take medicine regularly.
While he remains in the early stages of the disease, they wasted no time getting their financial, legal and medical affairs in order, so they can spend the rest of their life in sync.
“We’re going to the zoo tomorrow,” Diane said. “We’re trying to be very intentional about doing things we both enjoy.”
Wednesday, we’ll see how Alzheimer’s, gone unchecked, is turning an aging issue into a trillion dollar crisis for our children.
If you suspect you or a loved one may have Alzheimer’s or a related dementia, contact any of the following agencies for help here in Arizona: