This Is What It's Like To Love Someone With Dementia

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This Is What It’s Like To Love Someone With Dementia

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It starts again. The cycle. The never ending punch in the gut, jolt to the heart, baffling cycle.

The first stage:

Denial

“Have you talked to mom?” The question I hate to hear when one of my four brothers calls.

“Yes.” I close my eyes before I ask, “Why?”

“She just seems,” sigh, “Out of it.”

“No. I haven’t noticed,” I lie.

Then I end the call and pretend it never happened. I go about my day. I play with my children. We do homework. I cook dinner for my family, a mediocre, limp mess that we call a meal. I sit in my chair at the kitchen table, fork some food into my mouth, chew, and swallow, all the while trying to push her illness away from my reality. I smile at my son as he tells me something really important about one of his Lego Star Wars characters and nod my head feigning undying interest. I wipe my daughter’s mouth and ask her to use her fork and listen to her hum a song she learned at preschool. We all sit and eat, and I pretend it’s not happening. Again.

It’s not happening again.

It’s not happening again.

And so on until she reaches the next stage … everyone’s favorite.

I’m back!!!

My phone rings. I look at the name. “Mom” lights up. I want so badly to hit the red Decline button, but I can’t. I cannot ignore her call. I long to hear her voice, to feel her, to hold on to just a little bit of her normal, so I answer.

“Hi, Mom,” I say and hold my breath.

“You’re coming to see me Spring Break, right?”  She says, rapidly, faster than her usual Southern drawl.

“Um.  I haven’t thought about…”

“I’m cleaning out my closet,” she interrupts. “Do you want that brown suit that I bought with you at Dillard’s? You could use it for work.” Flight of ideas. Keep up. It’s not always easy.

“No, mom. I don’t work anymore.” I haven’t worked in 7 years.

“Oh.” She pauses, trying to make sense of that in her head but only briefly. Onto the next thought. “I’m so alive right now. I’ve never been better. Did I tell you? I’m back. I’m back, and I’m better than I ever was. I have so much energy. I stayed up until 6:00 this morning, organizing my closet. Organizing my cabinets. Organizing the laundry room.”

I picture my childhood home always tidy and neat, immaculate actually, and then I picture her organizing, her new way of organizing.  Her clothes drape over her bed and litter the floor next to her closet. The plates I ate so many meals from stack on top of each other on the kitchen counter next to the silverware and her cast iron skillet, the one that she used to make me fried okra and French fries anytime I requested. Her prized teapot collection no longer collects dust in her antique display cabinet.  Pieces of it scatter all over the house, unmatched. She uncharacteristically went on a catalog shopping spree and spent almost a thousand dollars on junk. My parents’ formal living room couples as an advertisement for the As Seen on TV store. I imagine my dad rubbing his lips together, kneading the soft wrinkled skin on his forehead back and forth with his fingers, trying to ignore the mess … the clutter … the illness.

“I’m glad you’re feeling well,” I lie. She’s not well. We all know it, but she feels great. Some synapse in her brain rapidly fires over and over and sends her on a temporary high. A high that she feeds on, that she enjoys, that makes her look “crazy” to the outside world, but just fragile, like porcelain plunging to tile about to shatter in a million pieces, to me. She will break. Soon. So I brace myself. And I hold onto her happy, to her synthetic high with all of my force from behind my phone.

“I love you, Mom.” I say, swallowing the huge lump in my throat.

“I love you, too.”

“I know.”

I know.

I know.

And I do, which is why I can handle the next stage:

Anger

Her name lights up on my phone for the eighth time today. I sigh. I can’t do it. I can’t pick up and hear what I know she is going to say. I can’t, but I do. Every time. Because I can’t ignore my mom.

“Hi, Mom.”

“I don’t know what your problem is.” She spits at me.

“I don’t have a problem.” I say, grinding my teeth.

“You and your dad are assholes. Do you think I’m a child?” Says the preacher’s wife who rarely uses profanity. Sick Mom has no filter. Sick Mom uses words Well Mom would never, ever say.

She heard a conversation that took place between my dad and me, one where we were trying to decide what to do with her. She’s abused my dad to the point where he can’t stand it anymore. She hates him, hates the way he smells, the way he looks, the way he breathes, the way he walks, the way he sleeps, and she tells him this. Every minute of every day. I fear for him. I know that she would never hurt him, the well she, but the sick she hates him, and the sick she often references things like butcher knives and frying pans, so I speak to my father every morning when I first wake up to make sure that he’s still alive.

That’s what sickness does to a family. It makes it doubt the legs on which it stands. It makes it doubt the heart that makes it beat. It makes us doubt our mom. And it’s terrible.

“No, Mom. I don’t think you’re a child.” Even though we sort of treat her like one. My dad unplugged the stove to keep her from catching their house on fire. He disconnected her car battery so that she can’t drive away when he isn’t watching. We whisper behind her back and tiptoe around her, not wanting to strike her ever ready match. We make plans for her without her approval. But we don’t think she is a child.

“Mom. Please stop being mad at me.”

“You know what?”

“What, Mom?”

“Your husband should leave you. He should take your kids and leave and never look back. Those kids deserve better than you. And so does your husband. You don’t appreciate him at all.”

“I know, Mom.”  Because agreeing makes the conversation shorter, and I’ve heard this at least four times today. She’s also told me that I’m a whore and a piece of shit and the worst mother on the planet.

She’s angry with me because last time this happened, I made the decision to put her in the hospital, the one she calls “the loony bin,” the one she refuses to go back to, the one that did nothing but make her worse. I hate myself for making that decision, but we didn’t have a lot of choices. My brothers weren’t brave enough to do it, and she became too much for my elderly father to control, and frankly, I didn’t want her to kill him in his sleep, but that I don’t tell anyone.

She also does not understand why I cannot visit her, why I won’t allow my children to see her this way. She can’t understand. They need to remember the well Nana. The Nana who always kept candy in her pocket and secretly handed them a piece each time I turned my back, the Nana who sang “The Itsy Bitsy Spider” off key but with joy and giggled every time the song ended, the Nana who would sit and hold them on her lap, rocking in her chair, reading them books, content to have the chatter of children all around her, who played hide and go seek, who threw the baseball in the back yard. The Nana whose laugh was contagious and the best sound on earth.

“I’m sorry that you’re mad at me, Mom.”

“Sure you are.  You don’t care about me.”  And with that, she abruptly ends the call.  I put down my phone. And I cry. Because my mom is sick, and nobody can answer the question:  “Why?”

She’ll call me at least twenty more times that day, and I’ll answer every time. And I’ll listen to her assault of words because she’s my mom, and I know she doesn’t mean it.

I know she doesn’t mean it.

I know she doesn’t mean it.

And I brace myself for the next stage. The worst stage of all.

The lights are on but nobody’s home

“Mom” hasn’t flashed on my phone screen in days. Yesterday, on her birthday, I called her, and we spoke. A simple, “happy birthday, mom,” conversation. I said, “I love you,” and she said, “I love you, too,” and we ended the call. That was yesterday.

Today is my birthday. On normal birthdays, my mom calls me and recounts my birth. She tells me for at least the 35th time that she went into labor with me at her birthday dinner, two days late. They rushed to the hospital where she continued to labor with me over night.

“Everyone from the church was there, and all I wanted was to be left alone,” I hear her voice in my imagination, her normal well voice, tell me. “My room was full of people.” She goes on to tell me who was there. She labored all night and then finally, with no aid of medication, she delivered me at 9:35 the next morning. The doctor announced, “It’s a girl,” and the room fell silent. A girl after four boys. “If you would have been another boy, I think I would have told them to put you back in,” her normal well voice tells me with a chuckle, normally.

Normally, on my birthday, my mom and I talk about her going into labor on her birthday with me, “the best birthday gift she ever got.” Normally, but not this year. And not last year. Because my mother forgot my birthday. Again. It’s not her fault. It’s because of the illness. It’s because of the sickness in her brain that we cannot explain.

But it doesn’t hurt any less. Because it’s our thing. Our birthdays … our birthdays are … special.  I’m the best birthday gift she ever got. Remember, Mom?

Remember?

Remember?

But she doesn’t. Her brain has checked out. And she doesn’t remember.  She doesn’t even know if she brushed her teeth this morning. She stands at the sink and pours herself a glass of water, forgetting to turn off the faucet as water pours over the side of her glass and splashes her hand …and she doesn’t know it.

I’ll check my phone a thousand times today, and her name won’t appear.  She forgot. It’s okay, I tell myself.

It’s okay.

It’s okay.

She’ll get better. She’ll come back. She always does.

Until then, I’ll ferociously go through my card box and try to find one from my mom. A card with her voice, where I can hear her, the real her, the well her. And I’ll read every card she’s ever given me. And then I’ll find a little gem in the box, a note that she put in a pile of mail she sent me when I first moved to Dallas thirteen years ago. And there she is. Just like that.  Two simple sentences.

“Here’s your mail, Sweetie.  Sure do miss you so much. Love, Mom”

I miss you, too, Mom.

So much.