Alzheimer’s: Susan’s Story Inspires

Susan and her Mom Patti on St Patrick's Day 2012
Susan and her Mom Patti on St Patrick’s Day 2012

On Sunday, March 22, UU friend Susan Macaulay gave a presentation about the journey she’s undertaken with her mom who was originally diagnosed with Alzheimer’s disease in 2006.

Susan, who lived in Dubai for 18 years, came back to care for her Mom in her mother’s home near Georgeville  in October 2011.

Susan shared audio clips and examples of how the experience with her Mom have transformed the way she sees Alzheimer’s disease and the people who have it.

“I believe if you believe people are going to be aggressive, angry and frustrated well, sure enough that’s how they turn out to be,” Susan said. “But if you see it in a different way then you can manage the situation differently. You can change your own behavior and you can have a different impact on the person who has the disease.”

Susan said her mother, who is in the later stages of Alzheimer’s, still has many moments of clarity in which she shares her thoughts and wisdom.

Susan quoted author and dementia care pioneer Naomi Feil who says:

  • all very old people are unique and worthwhile
  • maloriented and disoriented people should be accepted as they are we should not try to change them
  • listening with empathy builds trust trust reduces anxiety and restores dignity
  • there’s a reason behind the behavior of very old maloriented and disoriented people; it may be because their basic human needs are not being met

Susan recently published the first in a series of ebooks about her journey with her Mom; it’s called My Alzheimer’s Story: A Daughter’s Diary and is available on Amazon here.

Susan also writes a blog called MyAlzheiemersStory; see videos of Patti playing piano and singing with Eric Manolson here.