As dementia symptoms increase, doctor living with alzheimer’s knows exactly what his future holds 7 gas laws


UPDATE: In the days since this story was published, readers have responded to the portrayal of Dr. David Kramer by sharing the struggles their afflicted family members face. They also commented on the difficulty for society and the plan Dr. Kramer has for the end stage of his disease:

The Kramers’ children — Nicholas, a Cornell University graduate at 18, and Taylor, a ballet dancer like her mother — remember their dad during those years as a disciplined do-gooder, a tightly wound jokester who scheduled their vacations: beach time at 3 p.m., ice cream at 5.

And the lapses were spilling into his home life: a car breakdown he couldn’t manage, a habit of asking Tiffany if familiar dresses were new. When his family told stories, it was like he was opening a book at random and finding all the characters were strangers.

He began to see specialists at 54. A neurology colleague said he didn’t see a problem, and another specialist told Kramer he was too young to have dementia. A battery of tests — blood work, a CT scan, an EEG — showed nothing. Kramer asked if he could keep working and was told he could.

Kramer had seen what his father endured at the end. His dad had been an obstetrician-gynecologist. He was never diagnosed with dementia but clearly had been afflicted, though later in life. He forgot Dave’s name and talked to people in the refrigerator. He woke in the night, saying he had to deliver a baby, though he hadn’t worked in 30 years. In the end, he would sob and beg his son: "Just kill me."

"Kramer is fortunate in that he realizes that ‘I have a problem, and I buy it, and my clock is ticking, so let’s go nuts, let’s go skydiving, let’s go to the Grand Canyon, let’s go watch a sunset,’ " Justiz said. "The clock is ticking for all of us — for me, for you, not just Dr. Kramer."

"These tend to be very real conversations that are filled with both joy and profound sadness," said Clarke Pollard, executive director of the network. "The discussion will be, ‘This will probably be the last trip we take to Brazil, or to Seattle, because it’s getting harder.’ "

He and Tiffany began coming to meetings a year after moving to Naples. Kramer didn’t go in with the intention of becoming a leader, or a board member, but it didn’t take long for him to garner respect. As other members turned to him for guidance, that familiar feeling of esteem returned, one he didn’t realize he had missed.

"You can’t feed yourself, you can’t take care of your bowels and bladder, you can’t bathe yourself, you can’t do anything," Kramer tells the room. "That kind of dependency upon others without being able to enjoy what makes us human, to me, takes away the quality of life.

"You lose the ability to do everything, in the very end," said Justiz, the neurologist on the board of Kramer’s support group. "Think about what you knew as a newborn baby. That’s what Alzheimer’s will take you down to. It will make you just like a newborn baby."

Humor has become a way to cope, as it was in the emergency room. He tries to shrug off the vocabulary flubs ("That’s the ice cream on the cake!") and the memories just out of reach. He’d rather laugh about "Alzheimer’s Mad Libs" and getting to enjoy the same new things over and over.

He has been working to commit his "activities of daily living" to muscle memory, a road map for his uncertain future. In the shower, he washes himself in the same order every time, brushes his teeth the same way. When he flosses, each tooth has its turn.