mom, Geraldine, 69, both of Atlanta, the meaningful ritual is their regular Saturday trip to the bookstore. "She and my 3-year-old daughter will sit and look at the children's books, and I feel like it's one small way we can hang on to a normal weekend."
"But honestly, people with Alzheimer's have the right to go shopping, too — I was livid." — Luckie Daniels
Time is short — stop arguing. Many family members constantly correct the patient, whether it's during the relatively minor stages of confusion, or later, "when many people develop delusions," Robbins says. But setting them straight is pointless. "First, they won't remember it. Second, it puts you in an adversarial role, and that takes away from your ability to enjoy spending time with each other." Nye has learned not to respond, for example, when Libby pleads with him to take her home. "For a long time, I would say, 'You are home — I'm your husband, these are your clothes.' Now I change the subject, and say, 'Let's go [for] a walk.' "
Find their greatest hits. Dig into your loved one's personal musical history and find out what songs were big hits in the patient's late teens and early 20s, suggests Sharon Gregoire, 59, an occupational therapist and author of a workbook called I Still Enjoy a Good Laugh - A Guide for the Journey Through Alzheimer's Disease. "While they'll respond to any familiar music, the music they first danced and fell in love with, like the jitterbug, will really open them up." (Not sure which songs might suit? Just typing "greatest hits 1939" into iTunes will lead you straight to Judy Garland's "Over the Rainbow," Billie Holiday and Glenn Miller, for example.)
Talk less, do more. As the ability to chat fades, it can be tough for family members to feel connected — visits can start to feel strained. "Find small jobs they can do, like shucking corn, folding towels, or winding a ball of yarn," Gregoire says. Also, when her father, a retired farmer, was too ill to walk around the fields, she would bring him gifts such as a handful of fresh-cut hay to smell and touch. "Even a box of bolts to unscrew can make the difference between an hour of frustrating conversation, or one when you get to pass the time together pleasantly."
Counter intolerance. When Daniels took her mother dress shopping for Thanksgiving last year, "a woman standing behind us was talking on her cell phone, complaining about how slowly we were moving. I couldn't help myself — I turned around and told her Mom has dementia and it takes her a little more time to make up her mind. The woman was mortified — and her husband was so embarrassed. But honestly, people with Alzheimer's have the right to go shopping, too — I was livid." Kallmyer says some people even like to carry business cards with messages like, "Thanks for being patient with my husband — he has Alzheimer's," as a way to let waitresses, tellers and sales clerks understand that they may need to take a little extra time.
Don't confuse the disease with the person. It can be disturbing to watch a once-polite, understanding person morph into someone who can't sit still, spits or even bites. "It's important to remember this is not the true person," Robbins says. "Sometimes people think they always had this repressed meanness inside, and that Alzheimer's just liberates it. But that's not the case. The disease has damaged their brain — this isn't the true them."
It also helps, Kallmyer says, to know that keeping patients involved and engaged in any way helps them. "Eventually, the public will understand that people with Alzheimer's need to have meaningful engagement with people every single day," she says.