Thursday, October 2, 2014

Daily Battles

Just after 5 a.m. this morning, my phone began to explode with notifications. My hand reflexively groped under my pillow to locate the noisy beast as my sleep-deprived mind wrestled to make sense of what was happening. Squinting through one barely-opened eye, I saw that my brothers were firing messages back and forth in our three-way group text.

Uh oh. Not good. My brain tried to force itself out of hibernation as I slid open the message and began to read.

The police were at my mother's house. She had called 911, reporting intruders in her home, but upon arrival, the officers found nothing. Concerned about my mother's well-being, they contacted my eldest brother to report.

Suddenly, I was wide awake.

A wave of worry and the accompanying blast of adrenalin shot through me.

My stomach turned over as I pieced together what must have happened.

Mirrors are a special challenge for my mom; most of the time, she understands that she's looking at a image of herself. But at times, she sees her reflection as a stranger, or even an enemy.

Hallucinations again. As my mom's dementia has worsened, her mental abilities have polarized into two distinct extremes. Sometimes, her faculties are strong, and she is surprisingly capable of clear and logical thought. At other times, especially when she is anxious or angry, her addled mind takes over and she becomes extremely confused, to the point of not knowing how to dress herself or even where she is.

In order to handle this strange polarity, Mom has developed a coping mechanism. Identifying herself as the logical, reasonable person she has always been, she responds to the bewildered thoughts within her mind as though they belong to someone else. Oftentimes, she hallucinates and experiences her confused thoughts as uninvited guests who lurk around her home and torment her. So while this isn't the first time my mom has told us about these visitors of hers, this is definitely the first time the police have arrived on the scene and called one of us to follow up.

Another slip in the ugly decline of dementia.

In my mother's master bath, a counter-to-ceiling mirror fills one long wall so that the entire room is captured in its reflection. As she moves in and around the room, my mom often catches a fleeting glimpse of herself and imagines she is seeing an intruder wearing her clothes. 

More text messages were ringing in from the Eastern Time Zone. Already on his way to work, my youngest brother called Mom first, hoping to find out more about what was going on. I lay in bed, wide awake but with my eyes shut tight against this ugly reality, waiting for my turn to talk.

Ten long minutes later, I placed my call. She picked up on the third ring, with a breezy, "Good morning, Diane!"

No one knows a mother better than her daughter. From those five syllables, I knew exactly what she was up to. Her slightly slurred, almost drunken-sounding speech told me unequivocally that she was still hallucinating and confused, but her forced cheeriness revealed her intention to fool me.

We traded pleasantries, as we do each day in our regular morning call, but in a notable departure from our usual routine, I asked, "So, what's going on?"

Three times I asked that question.

And three times she tried to play me. "Nothing," she said.

Three times in a row.

I paused and waited, not sure how to break through her stonewalling.

Sometimes, Mom will stand directly in front of the mirror and talk to herself. Eventually, I hear the slurring quality move into her voice, and realize that her interpretation of the image has shifted. The monologue changes as she talks not to herself anymore, but to the "stranger" she sees in the mirror.

But finally Mom caved in. "You would not believe what's going on around here!" she burst out.

I listened as she told me that an impostor had broken into the house and was pretending to be her. But my mom knew that this woman was a phony, because when the strange woman looked at the photos of my mom's children and grandchildren displayed around the room, she didn't know their names.

"Of course, that can't me," reasoned my mom. "I know everyone's names!"

I subtly quizzed her and sure enough, her memory was perfectly intact.

I've learned from experience that directly confronting my mom about her confusion does not work. As tempting as it might be to simply tell Mom that she is imagining things, this approach only deepens her anxiety. A more useful strategy, I've discovered, is to show empathy and ask questions, in order to learn more about her view of reality.

"Who would do this to you?" I wondered. "Who would play such a mean trick on you?"

"I don't know!" she anguished, clearly relieved that I believed her.

"Can you let me talk to her?" I experimented, not knowing where this would lead.

"Yes!" Without skipping a beat, I heard my mom say to the imaginary impostor, "Here, Diane wants to talk to you."

In that instant, the clouds of confusion in her troubled mind parted, and reality shone through. Before I had a chance to respond, my mother said to me, clearly and calmly, "See? It's me."

And I didn't know what to say.

* * * * *

One morning, in a fit of frustration and anger, my mom slammed a dresser drawer and brought the heavy oak-framed mirror balanced atop the chest of drawers tumbling to the floor. Thankfully, she was not hurt, but to be on the safe side, my brother moved the mirror to the basement. We are all much happier that it's gone.

Before I began this walk with my mother, I thought of Alzheimer's as a disease of misplaced reading glasses and idle-minded forgetfulness, with perhaps a few frightening episodes of unsupervised wandering around the block. I knew that Alzheimer's ends in death, and I imagined that its victims gradually and gently passed into a misty twilight where they experienced the end of this life and the beginning of the next.

And for some, that may be what Alzheimer's is like.

But for my mom, this disease is a fight. As the shadows of Alzheimer's-driven anger and anxiety, hallucination and paranoia creep stealthily across her mind, my mom pushes back with all her might. Trying to quell her confused thoughts, struggling to bring logic to her imagined fears, my mom uses every ounce of her dwindling powers of reason to make sense of what is happening to her and to find a way to cope.

I know this is a fight that we will ultimately lose. But for now, I am honored to help my mom with her daily battles.

Update: Dementia professionals later diagnosed my mother with not Alzheimer's but Lewy Body Dementia, which explains the different symptoms and progression of her disease. 

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