When the Christmas Bureau opens Thursday, longtime volunteers Carol and Karl Speltz won’t be there.
Recipients won’t visit with Karl at the ID table. They won’t see Carol checking that all is running well, as she did in 2007 and 2008, when she co-chaired the whole thing.
A year ago, Carol, 73, was diagnosed with Alzheimer’s disease. Karl, 74, her husband of 50 years, is her care provider.
The well-known couple – she was principal at St. Mary’s Catholic School in Spokane Valley, and Karl was a career Army officer turned Central Valley School District administrator – decided against keeping her diagnosis secret.
They tell everyone. Karl hands out an Alzheimer’s Association card that reads, in part: “My companion has Alzheimer’s disease. I appreciate your patience and understanding.”
The Speltzes are part of a national trend toward openness about the disease. Experts hope this will transform our society into one that embraces – rather than shuns – its 5.3 million citizens with Alzheimer’s.
Where’s my purse?
Carol kept losing her purse. This early sign started about two years ago.
“I’d be looking right at it but couldn’t recognize it,” she said in a recent interview at the couple’s South Hill home.
Her longtime physician did some tests.
“Any appointment you had, he would always lay out five things,” Carol said.
“He’d pull out his wallet. He’d lay a pen there. He’d slide his can of pop over. A cup. A pencil. And then he’d put them away, and then he’d talk to you for maybe 10 minutes.
“Then he’d say, ‘What were those five things?’ The very last time, I screwed up on all of them.”
Carol then consulted a neurologist who recommended extensive blood work, analyzed at the University of California. The blood tests revealed that she possessed a gene linked to Alzheimer’s.
Her favorite cousin, Joyce, died of Alzheimer’s three days before Carol got her test results.
The genetic marker, though a strong indicator, isn’t the ultimate proof, however. Some people possess a genetic predisposition, yet never develop the brain disease.
But a complete medical workup, such as the one Carol underwent, diagnoses Alzheimer’s with 90 percent accuracy, according to the national Alzheimer’s Association.
Carol’s initial reaction to the diagnosis? Relief.
“I had prayed for years I wouldn’t get cancer, because it seemed like such a debilitating disease,” she said.
The Speltzes told their four grown children right away. Then they told friends.
When Carol and Karl traveled to Grants Pass, Ore., for her 1955 high school class women’s luncheon, Carol stood up and said: “I have something to tell you.”
She then educated the group on her Alzheimer’s, in the same enthusiastic way she once taught history to eighth-graders.
Carol’s short-term memories elude her, but she hasn’t yet lost her older memories, or the majority of her words.
The Speltzes joined a support group, sponsored by the Alzheimer’s Association Inland Northwest Chapter. This support group is fomenting a small but profound revolution in the way we talk, think and deal with the disease.
Laughter in two rooms
Gail and John Goeller of Spokane didn’t keep John’s Alzheimer’s a secret, either, when he received the diagnosis in 2004.
“How can you omit Alzheimer’s from someone’s story?” Gail said.
The Goellers were already well-known in senior circles. They published an Inland Northwest resource directory for older adults, and Gail wrote the book “Coming of Age with Aging Parents: The Bungles, Battles and Blessings.”
After John’s diagnosis, they were the prime movers behind a new kind of support group, based on openness.
The early-stage Alzheimer’s group has seven couples. It meets every other Wednesday at Providence Center for Faith and Healing.
The group divides in two: care providers in one room, those with memory loss in another.
“We’re in rooms side-by-side,” said Becky Tiller, facilitator of the memory-loss group. “We’ll hear them laughing, and they’ll hear us laughing. It’s refreshing.”
The groups tackle not-so-funny topics, too.
During a discussion of death one day, Tiller – who has led Alzheimer’s support groups since 1987 – asked: “Would you wish for death over dementia?”
Initially, they wished for death. “But now, no,” Tiller said.
In the care-provider room, facilitated by psychologist Darrelle Volwiler, spouses speak candidly about the stress, which has the potential to kill them long before the disease kills their loved ones.
The candor didn’t always exist in previous generations. Early-stage Alzheimer’s folks were sometimes placed in mental institutions or hidden away in homes, locked in by their family’s shame and worry.
“They aren’t locked away,” Tiller said of the people in her group. “People aren’t ashamed of them. It’s forcing people to see the person, not the disease.”
Memoirs written by those with early-stage Alzheimer’s, and their loved ones, helped this openness trend grow nationally.
In the 2010 book “Jan’s Story,” CBS news correspondent Barry Petersen writes about the Alzheimer’s journey with his wife, Jan, diagnosed at 55. She now lives in a care facility. Petersen visits often, but he is candid about being in another relationship.
Alzheimer’s disease experts hope this openness will help with the coming “gray tsunami.” The first baby boomers turn 65 in January. The majority of people with Alzheimer’s are 65 and older.
Tiller, owner of Tiller Care Strategies, a geriatric care management company, says: “If you haven’t been touched by dementia, you will, whether it’s a spouse, a sibling, a parent. It will touch your life.”
Gail and John Goeller do presentations to community and health care groups. Their hope? That others will open their lives to a family living with Alzheimer’s.
“There are so many opportunities to integrate Alzheimer’s people into the culture again,” Gail said.
Friends take John golfing. Their 5-year-old grandson gently guides John home on short walks.
“And bless the Rosauers on 14th,” Gail said. “I can still send him for one item. They see him coming and say, ‘John, do you need some help?’ ”
‘I didn’t get lost once!’
The Speltzes traveled to Munich in October. They lived there in the mid-1960s when Karl was stationed in Germany.
Carol told Karl: “Before I forget things, I’d like to go back to Munich.”
Their oldest son, Jon, traveled with them, so both could keep an eye on Carol.
“To lose someone in the airport, or in the Hofbräuhaus, you can imagine what it would be like,” Karl said.
“When we got on the plane in Frankfurt, headed back to Seattle, Carol put her hands on her hips and said, ‘I didn’t get lost once!’ ”
Despite their openness, Carol and Karl feel their lives constricting.
“My skis will go away,” Karl said. “My golf clubs are going away.
“It’s not that I can’t do them, or Carol wouldn’t let me do them. I can’t afford to get hurt. If both of us were down, we’d have to have full-time care.”
Some friends have quit calling and visiting.
“It’s not the fact they don’t want to talk to her,” Karl said. “I don’t think they know how to talk to her.”
Carol’s been awed by her children’s comfort and support. She hopes by the time they are her age, a cure will be found.
“At least they are aware it can be inherited. I was not,” she said.
Though they can’t volunteer this year at the Christmas Bureau, Carol and Karl plan to stop by to say hello to friends there.
“My heart aches for him sometimes,” Carol said of her husband. “How many times do I say, ‘Where’s my purse?’ Or ‘What day is this?’ I’m always repeating.”
Karl, a retired lieutenant colonel, minimizes the frustrations.
“Some days are real adventures,” he said. “And some days, we have our tears.”
Karl once heard this saying: “Your price on Earth is service to others.”
“Carol was service to me when I was in the military and gone a lot, and she took care of the four kids,” he said.
“And now, I will be service to her.”
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