Thursday, March 29, 2012

My Mother's Mirrors

When my mother started talking about “that family in the next room,” I knew we had a problem. The “next room” she was referring to was the mirrored closet door in her bedroom.
            My mother had Lewy body dementia. Lewy bodies are the abnormal round structures that are deposited in the brain when people have Parkinson’s disease. Although people with Lewy body dementia sometimes develop physical symptoms similar to Parkinson’s, the first symptom is usually an inability to separate reality from—what? Dreams? Misinterpretation of sensory stimuli? It’s the second most common type of progressive dementia after Alzheimer’s, yet most people have never heard of it.
            My mother had been diagnosed only a few months earlier because she called me while I was on my way home from church.
            “Where are you?”
            I could tell by the tone of her voice that something was wrong. “What’s going on?”
            “Well, I might need your help later. I just wanted to be sure you were around in case they didn’t leave.”
            “In case who didn’t leave?”
            “Oh, there’s a man and a woman. I guess she’s his wife. An older man—her father, I think. And some kids.”
            “What are they doing?”
            “Just looking around. They pick up stuff and look at it and put it back down. I asked them what they want, but they won’t talk to me.”
            I wasn’t more than fifteen minutes away, and I wasted no time getting to her condo.  When I arrived, she seemed a little frightened. Her eyes darted nervously around the room—which looked exactly as it had the last time I visited her—nobody there but her, and nothing out of place.
            “Did they leave?”
            “I don’t know where the others went, but the older man went into the bathroom. He must be sick, because it really stinks now.”
            The bathroom door was nearly closed. Half afraid of what I might find when I pushed it open, I was nevertheless emboldened by my inability to smell anything more than my mother’s favorite air freshener. Cautiously, I peeked in.
            The bathroom was empty.
            I spent the next two hours trying to convince my mother to go with me to the emergency room. Worst case, I feared she’d had a stroke; best case, I knew she’d suffered hallucinations several years ago when she had low blood sugar.
            And I did convince her. But four hours in the emergency room produced no explanation for her Sunday “visitors.” In fact, she was surprisingly healthy for her 84 years—her blood pressure and cholesterol were better than mine!
            “I must have dozed off and had a dream,” she said, by way of explanation.
            I didn’t buy it. She’d been awake when I arrived, yet she was convinced one of them was still around. And I discovered later that another of them, a boy about eight years old, stayed behind and kept her company. She named him Peanut. She enjoyed his company, but she wasn’t as sure about the rest of the family, especially the father. She didn’t trust him.
            When my brother-in-law and his family came to visit at Christmas, they covered the mirrors with pretty stick-on paper, thinking that maybe if she couldn’t see the reflections, she’d realize they were simply closet doors instead of a portal into another world where people lived that only she could see. 
             For a while, it seemed to work. But the hallucinations started being triggered by the bathroom mirrors, and they became more frightening. Because she seemed to fare fairly well during the day, I started spending the night with her, but soon realized she needed someone with her who was awake and alert 24 hours a day. The complex she lived in included a section for assisted living, so she moved from her condo into an apartment.
            There, too, she was convinced she was seeing people in another room through her mirrors, but they didn’t come into her quarters as often as they had. For a time, she would buzz for help or walk down to the dining room and help the staff fold napkins if she became frightened at night. Then one afternoon she called me to come get her because she wanted “to go home.” I found her outside the building, waiting for me at the curb. Usually that wasn’t a problem. Residents came and went as they pleased, and she had often met me outside when we were going out to eat, which we did at least a couple of times a week. But this time she was outside because my father, who had died three years ago, was working in the attic, and he and his crew were making so much noise it was giving her a headache. She wanted to go home, meaning my childhood home, which they had left when I started college. If she had started out to try to find it before I’d arrived, she could easily have wound up on a busy highway. We had to move her into the memory unit.
            The memory unit had fewer mirrors. Although she had fewer visits from the family—even Peanut was absent—she started having visits from relatives: my niece of 15 years earlier, a cousin of 30 years earlier. They always needed her help—help she was unable to give. Then one night she was convinced that she was a visitor in someone’s home, and while the attendant stepped out to let her change into her pajamas, she decided to shower in order to free up the bathroom—her private bathroom—for those who needed to shower in the morning. Unattended, she flooded the bathroom floor, then slipped and fell when she stepped out. Her spine, like chalk from osteoporosis, crumbled, leaving her nearly paralyzed below the waist.
            Her room in the nursing home had no mirrors, and she had no invisible visitors during the week she was there. The day she died, she was more alert and lucid than she had been for months. Then she just drifted away, staring into space. At almost exactly midnight, a week after her 86th birthday, she took a deep breath, closed her eyes, and just—stopped.
            Going through her things, which had accumulated in my garage as she moved to progressively smaller quarters, I found a small looking glass set in a carved wooden frame. It now lies on the vanity in my bathroom.


  1. What a heartbreaking story, Angela. My mom also has dementia--not certain which kind. She was diagnosed two years ago, but I remember that a few years before that she was having occasional "visions" like your mom had. She swore she saw a little Dutch boy standing in her living room. We didn't realize at the time what it portended. It sounds like your mom had some peace at the end, and that must be a relief for you. Thanks for sharing this touching story.

    1. Best of luck to you and your mother. Once my mom was diagnosed, we were able to track back to incidents as long as four years earlier that predicted what was coming. We just didn't know how to interpret them. I'm told that people with Lewey body dementia often see children and small animals.

      Yes, I was glad that she wasn't hallucinating on that last day. She wasn't afraid at all, and was even chatting up the doctors until just a few hours before she died.

  2. Angela thank you for sharing about what must have been a very sad and distressing time for you. It's always hard to see one's parents lose their faculties...I makes one feel so vulnerable...Hugs..

  3. This is a very personal post, thank you for sharing it with us!

  4. I have never heard of such a thing, but how frightening!! I can't imagine. I am so glad you shared this story if for no other reason than for us that had never heard of or imagined Lewy Body dementia, we could be educated!


    1. I'm glad I was able to bring Lewy body dementia to your and others' attention. It's easy to be irritated with people when they first start having symptoms. Maybe this will help somebody realize what's really going on.

  5. My wife and I had a somewhat similar situation with my Father in Law. Strokes and Alzheimer's left him occasionally talking to his long deceased family and wondering where is wife was, even when she was talking to him. They get fainter and fainter until they slip away.

    Great post.

    1. "fainter and fainter" Exactly. I remember looking at my mother and thinking of the elf queen in Lord of the Rings, "I shall diminish and go away to the west." (I'm not so much of a geek that I can remember her name.) My mother just seemed to diminish.

  6. I'm not sure I have words. This was so incredibly touching. Thank you for sharing your mother's story. ♥

  7. So beautifully written. I was utterly lost in the vivid description of this tragedy. I want to say thanks to you for sharing it. Beyond that, words are hard to find.

  8. typing through tears here - thank you for sharing

  9. That was incredibly vivid and touching. Thank you.

  10. Thank you to everyone for your kind comments. It has helped to be able to write about this. I've actually been trying for some time because so few people have heard of Lewy body dementia, and we all need to be aware of it, but nothing jelled until the GBE2 subject was "mirror."

  11. Today, I was looking through some of my old unfinished writing and I came across this piece that had been unfinished for more than a year. I read through it, made a bunch of changes and additions and clicked publish. Then, this evening, I remembered your post and thought I should share it with you:

  12. Thank you, Michael. I read your blog and have to say that I was very fortunate to have had both my parents until they were in their mid 80s. It's never easy to lose someone you love, but it's so much easier when you've had them so many years. My heart breaks for the small child you were when you lost your father.