What is it like to be an Alzheimer's caregiver?
It is to love without condition or expectation.
It is to value the predictability of routines yet to be flexible enough to jettison them when your loved one needs something not called for in the schedule.
It is to hug long and strong and often whether or not your loved one can hug back with one arm, with both arms, or not at all.
It is to laugh, dance, and cry with your loved one.
It is to accept the gifts of warmth and comfort while holding hands in silence.
It is to keep smiling (while fighting back tears) when a spouse of 20+ years asks "Are you my mother?" while you are helping him bathe.
It is to honor and continue to provide life-long preferences like classic rock and roll (turned up really loud), dark chocolate and dark greens in salads, and Dr. Pepper.
It is to remember a loved one's distaste for cauliflower (the evil vegetable).
It is to not take myself too seriously.
It is a relentless, ever changing experience that requires a heart of gold and nerves of steel.
It is to find joy in eye contact and gesturing when words are no longer possible.
It is to be "compassion in action" and a warrior against the darkness of dementia.
It is an adventure and a work in progress. It is an incredible journey of love.
Kathy. Along with staff at a skilled nursing facility in Central North Carolina, I am a caregiver for my husband, Tim. He was diagnosed with frontotemporal dementia at the age of 50 after 4 years of traveling near and far for answers to our many questions. He will turn 60 in August of 2010. He is a beloved son, brother, uncle, husband, father, and friend. He is amazing and courageous and inspires me every day.
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Original content the Alzheimer's Reading Room