Showing posts with label Lewy Body dementia. Show all posts
Showing posts with label Lewy Body dementia. Show all posts

Wednesday, December 10, 2014

My Mother's Mirrors


My mother's death certificate says she died of sepsis. Cardiac arrest would have been as accurate, since both were results of other conditions. You'll never see it on a death certificate, but she died of osteoporosis and Lewy body dementia.

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, sometimes watching over her while she slept. 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 that only she could see lived. And 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 about the time 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 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.

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.

Friday, December 9, 2011

Truth or Imagination?


A friend of mine calls himself a professional liar because he writes fiction. He’s joking, of course, because we all know the difference between lying and storytelling is whether you present your story as truth.

Unfortunately, in the last few years several great storytellers have presented their work as truth and later had to admit they had been writing, if not fiction, at least embellished truth. In some cases it seemed that they had actually begun to believe what they wrote. That can happen. A story repeated often enough becomes indistinguishable from truth even by those who tell it.

And in my many years of observing people, I’ve discovered that truth is somewhat relative anyway. This happens when individuals perceive facts differently because we approach events from the perspective of our own lives and experiences. (If you don’t believe this, just try comparing memories from your childhood with your siblings.)

I remember being asked once if someone was tall or short, dark or light. But from my particular place in the world, pretty much anyone over 14 is tall, and anyone who isn’t a tow-headed blond is at least as dark than I am. So I described the person in question as tall and dark and was later chided because they were of average height and complexion. I had told the truth from my own perspective.

I observed another aspect of the relativity of truth when my mother started showing signs of Lewy Body dementia. Those who have Lewy Body dementia seem to have trouble telling dreams from reality and they tend to misinterpret stimuli. A dream about a power strip catching on fire was so real that my mother poured water on it and told me not to worry about the smell of smoke. (Try being awakened at 3 a.m. by that kind of “reassurance!”) A robe hanging on the back of the bathroom door became person to her—a person who failed to regain consciousness when she moved the robe to the bed. So she called 911 for help. Her reflection in a mirror became a stranger in a room beyond the wall. She couldn’t figure out why they were living with her, but they became an entire family who would leave the children with her when they went to work. She’d leave snacks out for the kids to eat.

I learned very soon not to tell my mother the people she saw didn’t exist. I just told her I couldn’t see them. To her, their existence was truth, and my inability to see them was a simple fact she accepted without question.

And sometimes truths change over time. Once people believed that trees were inhabited by spirits, that nixies lived in the rivers, that fairies danced in the garden under the moon, leaving circles of toadstools to show where they danced. They accepted it as truth. We still can see those circles. Maybe we can’t see the fairies because we no longer believe in the truth of their existence.

On Seeing Half a Fairy Ring

So, what prosaic modern faeries danced last night
On an open lawn beside a cornfield
In East Central Illinois?

Musicians who in olden tymes
Played harps strung with spider web
Must now play fiddle and steel guitar
While they sing wild haunting melodies
'Bout truckin and drinkin beer
Made from honeysuckle like their wines of eld.

Do they yet wear gauzy flowing medieval robes,
Or do they dress in Levis, cowboy boots and Caterpillar caps
And clog around the circle
Left to warn away nosy humankind?

And was the circle left unfinished
Because a few minutes after midnight,
They heard a hot tip
On grain futures and pork bellies to invest
Their hidden treasures in?

No matter. For the day after they danced
The farmer’s son rode by on his tractor
And mowed down all their toadstools.