Sleep can be difficult in the most pristine of physical states, but toss in a chronic disease and the familiar act of slumber can be almost impossible. A publication devoted to sufferers of Familial Amyloid Polyneuropathy (FAP) details one woman’s thoughts about the challenges of caring for her husband with FAP.
“My husband, Aubrey, who was diagnosed in 2013 with familial amyloidosis, falls into the latter category of those who can’t fall asleep no matter how hard they try,” writes Jaime Christmas. “He takes sleeping aids, but even so, what dulls the body into stasis can’t dull the mind. I’ll find him awake in the still of the night, long after all of us are in bed. Then, I’ll discover that he’s still awake in the early hours of the morning. I wish I could keep him company, but that’s impossible.”
As a caregiver for a loved one, Christmas maintains that knowing limitations is important for all parties. “We are of no help if we are impeded or impaired,” she writes. “So, Aubrey fends for himself when it is dark outside, and gets some sleep when others are awake. For him, the day doesn’t start until later, unless he has a medical appointment to keep.”
