In her mid-70s, Ida began showing signs of Alzheimer’s. Her decline was gradual. She experienced the usual memory loss and attendant confusion, but life went on pretty much as before. Then one day, Henry came home to find Ida speaking to a framed photograph on the mantelpiece. They had many photographs of departed friends and family around the apartment, and Ida began to go from one to another, telling aunts and cousins whatever she happened to be thinking about. After the initial shock wore off, Henry became used to her chatter and resigned himself to this new quirk of hers. He’d known her friends and relatives, and he didn’t mind their playing a role in her imaginative life.
Henry never knew what she might say; he just knew that after a while he had stopped figuring in her conversations entirely. As time passed, he began to feel like an intruder in his own home. Aside from occasional comments about shopping and schedules, she barely spoke to him at all, keeping the warmest part of herself for her two-dimensional friends. “She talks to them with the tenderness that’s missing when she talks to me,” a bereft Henry told me. What do you say to someone whose wife prefers photographs of deceased authors to him?
Although we expect irrational behaviour and lapses of judgment from Alzheimer’s patients, we’re often puzzled by the baffling behaviour of caregivers themselves, many of whom mirror the denial, resistance, distortions, irrationality and cognitive lapses of the people they’re caring for. Carers, despite recognising that their charges are ill, find themselves behaving in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Because caregivers are “healthy”, we assume they should be reasonable, which is what makes their inability to adapt to the disease feel like a personal shortcoming.
“Watching My Beloved Hurt Is Hard”
People are often curious about how Lene and I ended up together. This is doubly true when I tell them that Lene was disabled long before I met her....