Alzheimer's disease ran the show for the last few years of Robert Lusk's life.
The incurable brain disorder took center stage in front of other ailments: chronic diabetes, heart surgery and prostate cancer.
But his wife and caregiver, Mary, had to take all of his medical conditions into consideration while maintaining calm and routine in Robert's increasingly chaotic days.
For instance, for Robert, snack time came at 10 a.m., 2 p.m., 4 and 9. For Mary, those were the times she tested his blood sugar levels to be sure his diabetes was in check.
When Robert went to the hospital for heart surgery, Mary never left his side, knowing he might grow disoriented in her absence.
That approach gave Mary perspective as the Alzheimer's disease progressed.
"It kept me thinking more about doing for him instead of thinking about what was wrong with him," she says.
An estimated 5.4 million Americans have been diagnosed with Alzheimer's, the most common form of dementia. And an overwhelming number of them are being cared for by unpaid – and often untrained – caregivers, the Alzheimer's Association says.
It's critical that those caregivers see dementia-related disease as part of an overall picture of health, say professionals at Grand Villa of Largo, the assisted living and Alzheimer care facility where Robert Lusk lived in his final year.
The illness places enormous pressure on loved ones to pay attention to even the most minor changes, they say.
Dementia keeps individuals from understanding their symptoms or their level of pain, so caregivers must constantly look and listen for clues, says Suzanne Balko, an Infinity Home Care patient care coordinator and nurse at Grand Villa.
"I'm your eyes and ears. Are you hungry? Are you in pain?" Balko says. "That's the difference in taking care of your Alzheimer's and dementia patients and your other medical patients."
One way to get control is by creating a simple routine to the day, says Debra Stamper, the nursing supervisor in Grand Villa's 32-person Alzheimer's wing. The familiarity of routine calms the person with dementia, but it also makes it obvious to caregivers when behaviors change.
Something as simple as a person refusing to wear shoes could be a clue he's developed blisters. A refusal to eat could mean that his teeth hurt, Stamper says. Changes to body language also could be clues.
Stamper says changes in behavior can simply be a progression of the disease. But they also might be signs of other medical problems that manifest in dementia-like symptoms.
Confusion, a major symptom of dementia, can be a sign of a urinary tract infection or respiratory conditions, such as chronic obstructive pulmonary disease (COPD). Dehydration can cause confusion, as well, making it important that caregivers monitor the foods and drinks consumed. It's not uncommon for a person with dementia to be on anti-psychotic medications that could compound the need for liquids.
"We're always assessing and evaluating," Stamper says.
Most adults with Alzheimer's live eight years after being diagnosed with the neurological disorder, research shows, and medical needs will change through every stage of the disease. The progressive nature of the disease makes it impossible to predict what will happen from day to day, says Karen Truman, president of Dementia Caregiver Resources of Seminole and support group facilitator at Grand Villas. Routine helps you adapt, she says.
Stamper says her staff regularly talks with residents' doctors, especially when they need to be hospitalized for a medical procedure. The change of routine, as well as the introduction of new medications, including anesthesia, can cause so many changes that a person's care needs to start back at "ground zero," she says.
While looking out for a loved one is critical, the professional caregivers emphasize the value of balance. They urge loved ones to make sure they aren't neglecting their own health as they work to keep things running smoothly for the patient.
"Take care of yourself right now," Stamper says. "My mom, she needs me. But I can't take care of her if I can't take care of myself."