But then one day my mother, who was a loving and devoted grandmother, showed up at my son's school to pick him up. That wasn't out of the ordinary because she picked him up every day. But she arrived at noon—3 hours before his dismissal. My son's school called informing me that a teacher had spotted an older woman on school grounds just standing there alone, looking confused. I was beyond grateful that someone had noticed her, but my mind was racing. What if instead she had disappeared into the unknown? What if someone had hurt her?
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After numerous doctor visits, and an Alzheimer's diagnosis, I couldn't pretend that it wasn't real anymore. I had no choice but to start this journey with her.
At first I was embarrassed and I didn't want to tell anyone about her disease, not even our friends or neighbors. I grew up in a small community where everyone knew everyone, and I didn't want people to judge her. One time after her diagnosis we had gotten mail delivered to our home accidentally and my mom took the package and hid it—which is typical for people with Alzheimer's—and the package sat there for 6 months before I found it. It was someone's wedding gift! I was so afraid to walk down the street to our neighbor and say, "I'm sorry, but my mom who has Alzheimer's had your package for 6 months." When, really, giving it back should have been a positive thing.
So I decided to tell friends and neighbors about my mom's disease. The thought of someone calling her crazy or saying something hurtful was hard to stomach. However, I knew that I had to put my pride aside so that others knew what was going on and could reach me in an emergency. If my mom wandered off and needed help, someone would know what to do to help her.
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And she did wander off. I learned from the Alzheimer's Association—which helped me so much with advice and support while I was a caregiver to my mother—that wandering is something about 60% of people living with Alzheimer's do at some point during the disease.
My mother didn't live alone, but whenever one of my siblings or another family member who was staying with her would step out for a minute she'd wander off. My mother wandered so much that eventually the local police department became involved. That was my breaking point. I decided it was time to bring her to live with me. That was a few years after she was diagnosed.
Moving my mother out of her home was heartbreaking. She had lived in the same house since 1965. But again, I had no choice. I had to protect her as best that I could. The move was hard on both of us. I have 3 children and it felt as though my mother was now another child in my home. I removed the knobs from the stove to prevent her from cooking. I removed all sharp objects from the kitchen. I converted my boys' bedroom into our room so that she could sleep on one bunk bed and I could sleep on the other, and my sons moved into my room with my husband.
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People with Alzheimer's experience something called sundowning—which means that they get agitated at night and can't sleep. On many nights my mother and I would lay down to sleep and then 5 minutes later she'd be standing over my bed—just staring at me—wide awake. It was really scary. I literally felt like I was sleeping with one eye open and one eye closed.
I was terrified of her wandering off while I slept and after I caught her a few times trying to open the bedroom door I decided to hang Christmas bells that jingle around the doorknob.
I lost a lot of sleep. And I cried—I cried a lot. I leaned on the Alzheimer's Association and called their hotline. The person on the other line was always amazing. They said it was fine to cry and to get in the car and go somewhere or go out and get something to eat and clear your head, because caregivers take on so much and are often too hard on themselves.
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I worked so hard to help my mom. I would put sticky notes on all of her things to tell her where her bras, coats, and shoes were. I laid out her clothes every morning, even though she'd often be wearing something different when I got home—like a winter coat in the summertime.
It was all working well until one day when my mother tried to hit me. I called the social worker who worked with her at an adult day program for patients with Alzheimer's—which was a way for my mom to socialize during the day—and she told me to take her immediately to the emergency room. For everyone's safety the doctor refused to release my mother back into my care and I had to choose a nursing home for her to move into. I felt like a total failure. Here's this woman who did everything for me and when it was my time to give back to her I couldn't do it right. I felt like Alzheimer's had defeated me.
I had to sell my mother's home to help pay for her room at the nursing home, though insurance did cover some of it. It was heartbreaking, but the nursing home ended up being the best place for my mother at that time. They had multiple wings and hallways she could wander around at all times of the day and people there 24/7 to watch her.
I met a woman named Millie who worked there and she was a godsend. I would ask her about my mom's day and I would tell her how sad I got when I had to leave. She always gave me encouragement that I was doing what needed to be done. And she introduced me to support groups. That was my aha moment. I finally found relief by completely leaning on others who had experienced this disease first-hand. They taught me that Alzheimer's doesn't come with an instruction book. You just have to take it day to day.
This article was originally published by our partners at Prevention.