Take Susan and her husband, Peter.*
A couple in their late 70s, they were married in the 1960s, managing to stay in love, through sharing mutual interests and delighting in their children and grandchildren. Not that they have escaped sorrow and loss. Instead, they resisted the tendency to get swept away by it. Today, they confront a new battle: the dreaded diagnosis of Alzheimer’s disease. Grappling with Peter’s strange new behaviors has become a full-time occupation for Susan.
Keep in mind that bizarre or troublesome behaviors do not happen in a vacuum. Let’s consider Susan’s efforts to cope with her husband, Peter, and his recent tendency to wander late at night. She’ll need to consider crucial pieces of information. What type and level of cognitive impairment does he have? What is the history of his personality, habits, preferences and stress behaviors? Does he have other medical impairments? Has his environment changed, and in what way? What about his work and family history? What of his leisure time and spiritual life? What typically sets him off versus offers him comfort?
Susan has an eureka moment! She realizes that a proposed visit from their mentally ill son, Johnny, has triggered old fears and resentments. At the same time, his faithful Rover is at the vet with a recurring virus. When upset, Peter used to hop in his car with the dog and drive for hours until he could settle down and resume his routine. Now that he can no longer drive, Peter takes off a different way—walking for hours and invariably losing his way.
Because Peter is in mid-stage Alzheimer’s, Susan knows that lecturing him when he’s distressed can send him into orbit. Instead, she reaches out for an emotional connection through eye contact, hugging and assuring him that “all is well.” When Peter expresses his anger about their “lost” dog, Susan nods sympathetically and agrees with him that the house seems empty without Rover.
Together they move into the kitchen, where Susan pulls out a worn scrapbook containing photos of Johnny’s early years, before he was afflicted with schizophrenia. Susan also promises that Rover will be back home tomorrow, and then all three can take a long walk in the woods. The next morning she goes to the hardware store and buys secure locks to ensure that Peter cannot open the doors by himself, night or day. Peace is restored.
(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)
*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.