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janeBoomerang: Is It Really Alzheimer's?
"It was one of those things that happens to somebody else," says Keith Wolfard, a firefighter in Portland, Ore., who was accustomed to rescuing people in his work. Never in his wildest dreams did he imagine, as a man, that he would become tapped as a full-time caregiver in his own home.
Keith and Daphne, only in only in their 50s, were enjoying a blissful second marriage. Daphne was fiercely independent, loving to prove she could reel in game fish bigger than herself. Keith built them a beautiful early retirement home deep in the tall pines of rural Oregon. He didn't want to acknowledge his wife's creeping dementia. When Daphne's friends alerted Keith to her abnormal behavior, he made the rounds of doctors. No fewer than three physicians dismissed the idea that she had the dreaded disease, Alzheimer's. The couple relaxed and tried to forget about it.
Is it really Alzheimer's? Or is it depression, dehydration, malnutrition, urinary tract infection, and/or mismanaged medication? Alzheimer's is very difficult to diagnose and is often missed by doctors who say "She's old, what do you expect?"
"Urinary tract infections can cause mental confusion and be confused with dementia; so can dehydration," cautions Donna Schempp, the senior program director of the Family Caregiver Alliance in San Francisco.
Lorraine Larson, marketing director of the Council on Aging in Silicon Valley, finds that patients are often misdiagnosed with Alzheimer's when the problem is a combination of malnutrition and mismanaged medications. "As soon as the individual is eating properly and weaned off conflicting prescriptions, they become lucid again," she reported.
Some popular sleeping medications, after continuous daily use, can exaggerate memory lapses and produce symptoms similar to those of Alzheimer's. Dr. Jairo Rodriguez, a certified clinical nutritionist in New York, often sees patients over 50 who complain of an amnesia-like sensation. "When I ask, they're usually taking a prescription sleeping medication on a regular, long-term basis. "My clinical experience with patients who have been taking five or 10 milligrams a day of Ambien is that it can enhance a predisposition to a loss of memory. If a patient also drinks alcohol, both create a depression in the central nervous system. Over a period of time, the combination can create a huge effect."
Is it reversible? Yes, he said, but it may take several months. Drug companies claim such sensations are based on drowsiness and only affect 1 percent of users. No studies have challenged Ambien on this basis.
Many doctors won't listen to caregivers when they describe symptoms of concern in a family member. Keith finally had to make a trip to Oregon Health Sciences Hospital, where Daphne could have a complete battery of tests by a team specializing in the disease. It took a spinal tap to reveal the protein associated with Alzheimer's.
After the devastating diagnosis, Keith set up a New Normal routine for them. As Daphne's disease progressed, he came to accept that "I had to create new New Normals for us every day." Being a rescuer both by nature and profession, he devoted himself to "saving" his wife.
Keith was still able to work his part-time job as a long-haul trucker. But over the next seven years, he refused any help, except, occasionally, from his daughter. "I'm a big, strong, healthy guy, and hey, as a firefighter, I'm used to stress," he would tell concerned friends. "I saved people and I dealt all the time with death and dying."
But it's an entirely different story when the person you're trying to save is your missing piece. Keith was losing the love of his life, by ebbs of awareness and sudden fickle flows of clarity, even giddiness, then back to the slow, insidious dimming. The torture was the ambiguity of it all, exactly what the author and practicing psychotherapist Pauline Boss has famously described in her book, "Ambiguous Loss: Learning to Live With Unresolved Grief." (Harvard University Press, 2000).
On the day Keith lost Daphne, their fragile world shattered. Unable to get home from his long-haul trucking job in time to take his wife to a doctor's appointment, he asked her to drive herself and he'd meet her there. She was still able to follow the rules of the road. But Daphne never appeared. Keith began dialing her cell phone. He took comfort in knowing that he'd placed her phone in her glove compartment with an automatic recharger.
She answered! Thank God, breathed Keith, "Where are you now?" Daphne couldn't say. "Can you pull into a 7-Eleven and ask somebody?" Daphne didn't respond. Hour after hour, he asked her the same questions. Finally, he asked her to repeat his words. She scrambled them.
"Something had gone wrong in her brain to where she couldn't comprehend what I was asking her to do," he related.
As Keith recalls that moment, the darkness envelops him and his eyes tear up. The disease had finally rendered him, and the police and the cell-phone company, powerless to help. Dr. Boss writes about how caregivers in Keith's position must learn to live with things they cannot fix. She related, "It is especially difficult for people accustomed to averting the greatest tragedies."
Eleven hours it took, with a slicing cold blowing in near midnight, before Daphne pulled into a gas station. Unable in her confusion to access her cash or credit cards, the attendant thought she was inebriated and called the police. She was 45 miles from home.
This was the Boomerang, a forced turning in the Labyrinth of Caregiving. The disease had swung back and knocked over all their efforts to adapt to it. Once Keith had Daphne back in his arms, he knew she needed 24-hour supervision. Her behavior changed; she became easily agitated, or angry and combative, like a terrified child. Her own daughter recoiled from these changes in her mother's personality, very common in the later stages of Alzheimer's.
Fortunately, this episode punctured Keith's fantasy of playing God. He now recognized that he had to reach out for help and find some ways to nurture himself. Come back and look for his next video and my journal, as Keith moves on to playing God.
Takeaways
Primary-care physicians don't always know how to read the symptoms or what to prescribe for Alzheimer's. To get a clear diagnosis, you must have a diagnostic workup and see a neurologist, says Donna Schempp at FCA. Some states have free diagnostic centers.
The Well Spouse Association is a nonprofit league for those of us who care for a husband or wife who is chronically ill. It's a fairly small but fiercely dedicated organization that provides local support groups, publishes a newsletter, offers chat rooms on its Web site, and hosts an annual national conference. Among the men and women of WSA are people who've been caregivers for 20 or 30 years, others who've suddenly become caregivers in their 30s, and some who've survived the death of a spouse and now wish to give back to the organization that saved their sanity—as they so often put it.
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