An Agonizing Journey with Dementia–Pam Roller

[image error]When my mother and her (4th) husband married in 2002, she was a vibrant, quirky 70-year-old health nut who loved to shop, travel, cook, host parties, and regale her children with details of her sexual exploits. Today, she has an emergency appointment with the brain doctor one month before her regular visit for something to help calm her agitation, paranoia, and hallucinations.

My mom is a shell of her former self. She is thin from forgetting to eat, and tense from trying to hide her belongings in the closet and under the bed to keep people from coming through the mirrors to steal her things. She is constantly angry over the woman she sees kissing her husband on the couch, is convinced a man named Gideon wants to take her house from her, and hoards food–roomfuls of food. She is also rapidly losing her short-term memory, coordination, and sense of self.

Eighteen months ago, Mom was diagnosed with Lewy body dementia. The medication she takes has slowed the disease, but as time goes on the rapidity of dementia’s effects are blowing us away. Last week we thought she’d have at least another year in her house; today we’re looking at nursing homes. The turning point, the doctor had told us, is when a person with the disease becomes a danger to herself and/or others. Last week, Mom went at her husband with a handful of kitchen knives. The action set us all into a surreal, warp speed mode where none of us have been before. We don’t know what to do; we’re groping in the dark and struggling to remain emotionally clear-headed, and the fact that we need to make hard decisions in the midst of the heartbreaking speed of her decline is absolute torture.

Are you the child or spouse of someone with a form of Lewy body disease, the second most common type of dementia after Alzheimer’s disease? I’d like to hear from you. How are you handling it?