My initial reaction after spending a few hours with Hank and Jayne Slade last week was: Why did Alzheimer's happen to such a lovely couple?
My second reaction was: Why not them? Who better to blaze the way for the rest of us than a devoted, loving couple married 53 years? A couple with the history, commitment and will to tackle the excruciating and ever-changing circumstances of this devastating disease.
And though both Hank and Jayne admit to their frustrations, they are constantly looking for new ways not only to deal with the day-to-day obstacles of Alzheimer's, but to maintain their sense of humor – some days more than others.
I first interviewed the La Jolla couple in November 2005. Hank had been diagnosed with Alzheimer's three years before. To complicate life even further, he also had multiple sclerosis.
He told me at that interview that he no longer remembered their wedding day, though the couple started dating back in high school.
An avid photographer and founder of the San Diego Tennis & Racquet Club, Hank said, “The camera is my memory now.” His 85 photo albums help remind him of his life.
Since meeting, we've been chatting every few months. Hank started chronicling his experiences on a tape recorder for a Dementia Journal on SanDiegoElderCare.com. Now, he depends on my interviews with him. Jayne adds to her own blog as often as she can.
Handling the disease is getting progressively more difficult, she admits.
But to hear Hank tell it, “I'm doing good, super, the best we've had. There's nobody better than us two. Fifty-three years. We're all too high.”
Yes, he's having trouble choosing the right words. And memory? Hank gives me the raspberry with thumbs down. His short-term memory is shot, and, Jayne says, the long-term is dwindling, too.
But his bright smile stays put while we talk. “Humor is still a big part of our life,” Jayne says. “He loves to laugh, but he can't laugh as much at himself anymore. . . .
“Hank makes it sound like everything is so peachy keen. But the moment I say shave, get ready to do something, he gets angry. And I get annoyed. If we're not going someplace important, I don't worry about it and take him anyway.”
One of the biggest problems is that he can't recall how to do many everyday activities and refuses to relinquish control to Jayne.
“He just doesn't want me to do anything. I understand.” In reality, she believes, Hank's stubbornness is a good thing. “When it goes away, I know it's all over. So I try to be patient.”
Before our visit, she spent 35 minutes getting what she thinks was glue out of his hair.
She's afraid to leave Hank alone anymore except for the mornings when she goes to a nearby exercise class while he's still in bed. Otherwise, she takes him everywhere with her.
“I can't use a car,” he says, his smile finally fading. “That's the worst thing in the world.”
The last time I visited the couple, I'd suggested she enroll Hank in a day care program, and she took my advice. “But 10 minutes after I dropped him off, the center called and said he insisted on going home.”
She realizes it's time to hire help, but like so many of us caregivers, she's reluctant to turn over the reins.
I tell her unless she does, she's going to burn herself out and won't be there for Hank.
He adds, “I feel very lucky, first of all. My better half takes good hands for me.”
Marsha Kay Seff edits the San Diego ElderCare Directory, which is available at libraries, senior centers, Union-Tribune offices and Longs Pharmacies. You can also check online at SanDiegoElderCare.com. Contact Seff at marsha.seff@uniontrib.com.
