Don’t Stop Asking About My Mom

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I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.

 

Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

My Morning With Mom… A Composite

Andres Rueda

My mom isn’t yelling much. This is a new development. It wasn’t long ago that she would howl when I would walk into her room. “Shhhhh. It’s OK. Shhhhh. I’m here. Shhhhh.”  She’d turn her head, look at me with this terribly anguished, almost twisted face, and yell. “Shhhhhhh. I love you. Shhhhhhhh.” I would hug her. She would yell I would hold her hand. She would yell. “Shhhhhhhh. Los pollitos dicen, pio, pio, pio, cuando tienen hambre cuando tienen frio.”

Shit, why can’t I remember the rest of the song?!

“Shhhhhhhhh. Please, no grites. No grites. I’m here. I love you. No grites, por favor.”

“Los pollitos” was a song my mom used to sing to me as a little girl. I try to sing it to her, but, somedays, it just made the yelling worse.

Did she know the song? Was she telling me, “I REMEMBER!!! I AM YOUR MOTHER!!!”

Or, was my singing voice truly that offensive to her sensitive ears?

Eventually, her yelling would subside, and I would sit on the arm of her big, beige pleather sofa and massage the top of her head.

We are living in the Dark Ages when it comes to dementia and dementia care.

This disease is unpredictable and change can happen overnight. Now, when I walk into her room, she’s mostly quiet. Even as I move the sliding glass door along its warped track and the thing grinds, she doesn’t yell. She sometimes doesn’t even look up.

There’s nothing.

She doesn’t know who I am.

My morning with mom. A composite:

I walk over to the small black clock radio, turn on the classical music station, and hide the radio in a cupboard, so the other residents don’t pocket it when they wander in and out of the room. I walk back to my mom and sit on the arm of her chair.

I gently rub her head.

Though her room is quiet, but it doesn’t stay that way. Margie, her roommate starts talking about the kids in the yard (the residents who are walking back and forth); Jim knocks on the glass door and waves. “Hi, Jon,” I say with a smile (I wish I could be as happy as Jon; Jon’s wife once told me that he’s always been so sweet and the disease has made him even more so). Alice slowly creeps into the room. She’s carrying a man’s white sneaker in her hand. “Hi, Alice.” Alice slowly stands no more than a few inches from my face. I think she has something to say, or she wants something, but her words, lost and twisted in her tangled mind, are lost. She walks out of the room, and slowly paces back and forth. She’s young. She can’t be more than 50 years old. She wears diapers and they sag.

James shuffles along outside mom’s room. He’s fast. And very tall. The cold morning air doesn’t seem to bother him. Finally, he stops in front of our room and walks in. I’m happy about this visit.

I love James. He is one of my favorite residents. On good days, he’ll tell me that I’m beautiful. He makes my day every time I see him, especially when he flashes that chipped, toothy grin of his. He makes me smile. 

“Hi, James.”

“Hiiiiiiiiiiiiyyyyyyaaaaaaahhhhhh.”

James sings his words. He sits next to Margie and they start talking………………….. their conversation makes no sense, yet they laugh and carry on.

They speak their own language.

Mom sits and stares out at the sliding glass window. I make the sign of the cross on her forehead. I tell her I have to go to work and I kiss her goodbye.

>>Flickr photo by Andres Rueda

Honor the Caregiver

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. In the United States alone, there are nearly 15 million Alzheimer’s and dementia caregivers.

Click here and join us in honoring them by sharing a personal tribute message.

 

>>Flickr pic by Mrs Logic