Sometimes dementia comes barging in the front door; other times, more stealthily, it comes tip-toeing in the back. My mom’s Alzheimer’s came in through the back end of things, because it involved picking her up for a potentially life-saving colonoscopy, and if anything signifies the back end of things, it’s a colonoscopy! I told her I’d leave my house at 8 a.m. to pick her up, but she called me at 8 p.m. the night before, asking why I hadn’t called. This episode was the conduit for her moving in with my husband and me. She stayed here for her remaining five years.
Living with a mother with Alzheimer’s was a learning experience for me. I learned that it’s a complex disease, often encompassing delusions, illusions, visual and auditory hallucinations. I learned that, when my mom heard all those voices, the one voice she most needed to hear was mine.
One day she was insistent that someone was knocking on her bedroom door. Since it was adjacent to the laundry room, I said that she must have heard the dryer door opening and closing. Sometimes, she went along with this, and others, I was a “liar, liar, pants in dryer.” Her doctor guided my hand in this, telling me that “therapeutic fibbing” for the patient’s own good, to avoid further agitation, is fine. So, when she imagined that she played golf with Tiger Woods, I went along with it.
I guess fibbing ran in the family, because Alzheimer’s can include “confabulation,” which is where the patient makes up stories. Since my mom was an accountant by trade, I like to think that she went from “tabulation” to “confabulation.”
During those five years, I discovered two coping strategies that were particularly helpful, and both involve exercise. One was physical exercise, which I got a lot of because my mother was a wanderer! When she wandered out the door, I followed her. Through my experience with my mother’s Alzheimer’s, I learned that exercise is inherent in the caregiving role.
My other coping strategy is what I refer to as “exercising my right to write.” I kept a journal of my caregiving journey, which I turned into a book entitled, My Mother Has Alzheimer’s and My Dog Has Tapeworm: A Caregiver’s Tale. I wrote it with humor and heart, reflecting the way I dealt with my mom. Writing was cathartic, and I hope those who read it found it relatable. Sharing my mom’s story brings meaning and purpose to my experience, and gives me hope that what I learned can be helpful to others.
R. Lynn Barnett
Alpharetta, Georgia
4 thoughts on “A Knock on the Door”
Thanks for the humor, and also for answering a question I’ve wondered about Alzheimer’s: does it start gradually or begin quickly? Probably each story is different, with different points of entry, but you knock the door down perfectly.
Hi Sarah. Thank you. I’m glad you liked the article. I’ve read where sometimes, Alzheimer’s symptoms can be hidden or couched by the Alzheimer’s patient, either deliberately or not, so even though it might seem like a quick onset, it might have been hiding in plain sight, so to speak, for a while. Sometimes us caregivers are accused of not seeing the true picture, and we’re in denial, but sometimes, symptoms can be so subtle, that it’s easy to attribute them to something else. For example, in my case, I was going to meet my mom at the hairdresser’s at 1:00, but she showed up at 11:00, and she showed me in her day planner that it looked like 11:00, because her pen was low on ink, and so she wrote it stronger with another pen, writing the “1” slightly next to the first one, (1), making it look like 11. You’re right, each situation is so different. I think we all just put one foot in front of the other and hope for the best, and for a “timely” end to Alzheimer’s. Again, thanks for the comment. R. Lynn
Lynn, what a gracious job you have done. The retention of humor is a victory all of us caregivers should strive for!
Thank you, Mary. Ironically, when I’d give speeches about the book, I referred to my mom for 1 anecdote as a pseudonym, “Mary.” I think you’re right about humor; I think humor is almost a necessity when it comes to caregiving, for all concerned. I think it keeps us caregivers “sharp.” R. Lynn