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Carol Bradley Bursack, Published May 23 2010

Bursack: Dementia in public: Strangers will stare

Dear Carol: My dad has mid-stage Alzheimer’s. We like to take him out so he has some variety in his life, but he gets angry, paranoid and stubborn, even though we go to familiar places. People stare at him, and that makes my mother uncomfortable. I’ll admit I feel uncomfortable, too, but I try to hide it and help my mother. Any suggestions? – Pam

Dear Pam: It’s sad, but unavoidable, that when people act differently others will stare. I have been in your shoes. My dad came out of a surgery with total dementia.

At first, I tried taking both of my parents out for fun things, even if it was just to the Dairy Queen or a restaurant they liked. Dad would become confused by the commotion around him, and often paranoid. Mom, understandably, would feel embarrassed by his behavior. She knew he couldn’t help it, but this was the man she’d been married to for more than half a century. He’d always been dignified and, while friendly, a quiet sort of man. When he’d break out into these different personalities in public, it was more than she could bear. My solution to the outings was to bring the food or treats to them, and we’d have a party in his nursing home room. They both enjoyed this.

Clinic and doctor appointments were unavoidable, of course. I’ll admit I was annoyed when people stared at Dad. I wanted to say, none too politely, “He can’t help this, and he’s smarter than any of you!” Childish, right? But this was my dad they were staring at, and he was a victim of circumstances.

Mental illness, dementia and illnesses that make people act “odd” or “different” present challenges to caregivers. Everyone must make choices. One faithful reader tells me he takes his wife, who has advanced Alzheimer’s, to restaurants, not caring a whit what others think. Another faithful reader has multiple sclerosis. Her brain is wonderful, but her body doesn’t cooperate. She would rather not eat in public. She feels her dignity is compromised.

There is no right answer to your dilemma. Just know you aren’t alone, ask your doctor about your dad’s medications to make sure everything possible is being done, and if you do take him out, try to find places where he will be comfortable. If he still gets agitated or angry, it’s probably because he’s confused or frightened. Many people with dementia are happier in their own, somewhat familiar, territory. In that case, I’d advise you bring entertainment to him.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carol@mindingourelders.com.