Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

 

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

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

2920 Days and Counting……. Or How Time Contorts Your Soul

When it comes to dementia and demented events, there are very few things that actually disturb me anymore…………….. or, I should say, disturb me for extended periods of time. After all, I’ve been dealing with my mother’s decline for eight years or 2,920 days…………………………….. that’s a long time to get used to the grotesque. And everything about dementia is grotesque. I’ve seen things, heard things, smelled things that no child should ever have to experience……………… and no matter how old you are, those wounds, that trauma that bombards your nervous system, your psyche, never goes away…………………… it may get dull with time, but it never goes away for good.

I remember when my mom was taken to the ER before her month-long stint at the geriatric psych unit, and they had to test her for a UTI by inserting something into her urethra…………… but they couldn’t give her anything for the discomfort and I couldn’t explain what was about to happen because she no longer understood my words. The nurses made me leave the room; I could hear her screaming from down the hallway…………………… I think I almost threw-up, crying, feelings of guilt, regret, contempt, anger, fear consuming me alive……………… and then they were done, she was OK; still, those are the scars that never go away; but you have to endure, you have to get through it, you have to put it behind you, you have to prepare for the next trauma because it’s how you survive……………….. it’s the only way you survive……………… it’s the only way to keep yourself from cracking.

Thankfully (although I never hold my breath…….. glass half-empty, remember?), we’ve found some peace lately……………… her new home has had a calming effect on both of us…….. of course, as her disease progresses, her ability to figure out who I am comes and goes…………………. most days, she knows me or at least knows my face…………………. she smiles, she yells, and, in this case, that’s a good thing because it means she knows I’m someone important in her life………………. I hope she knows I am her daughter. I like to think she does.

But we’ve had a few days where she just stares at me.

I accept the fact that a day will come when she will no longer react to my presence. I accept that and I don’t think it will crush me………………. that’s how this disease works. I can’t change that. I can’t stop it.

I have to accept it and move on. I think I have.

I have prepared myself for that………….. truly.

I had not, however, prepared myself for what happened the other day.

I went to visit my mom one morning and she was especially alert……………. these are great days because they are so infrequent. We walked, sat, “talked,” held hands, hung out……………….. it was finally time for me to leave, so I took her to one of the rooms so she could cool off and watch TV. She walked in, turned around and saw me walking away towards the nurses station……………..

She started to follow me.

This is not an especially unusual event………………. she’s tried to follow me before; tries to catch-up………………. a heartbreaking act in itself……….. but most times, she either goes in another direction or is redirected.

As I walked out of the main building, towards my car, I looked inside………………… bars dividing us………………. she stared at me. I stopped. She stopped. Eyes locked………..eyes-wide open. Was that in my head? Does she see me? Does she know? Has the cloud lifted? Is she thinking, “Where am I? Why am I here? Why is my daughter out there? Why is she leaving me here?”

I got into my car and drove to Starbucks.

Because copious amounts of coffee help me unwind.

>>Photo by Meredith Farmer

Friends With Benefits and Alzheimer’s Disease…

………………………….Can make for a pretty complicated relationship.

Actually, I just saw the comedy Friends With Benefits last night and wanted to share because the movie touches on Alzheimer’s disease…………. Now, most times, I take issue with how news, movies and TV shows portray dementia……………… they typically avoid the grotesque, that is, the disease is wrapped up in a nice pretty bow at the end of the program…… like it’s actually a problem that can be solved.

For me, that’s just plain irritating.

In Friends With Benefits, Justin Timberlake’s father, played by Richard Jenkins, has Alzheimer’s disease and he actually has a challenging behavior: he takes off his pants in public. Part of the storyline (besides the obvious, beneficial, one) involves Dylan (JT) coming to terms with his dad’s diagnosis and behavior……………. Yes, the father has more lucid moments than not, and in those lucid moments, he’s incredibly wise, kind-hearted and ultimately helps his son make the right choice when it comes to love; however, what I liked was that the film (albeit briefly) addressed the toll on young adult children………… Dylan lives in New York, his father lives with his daughter in Los Angeles — there’s an inner conflict; Dylan’s feelings of embarrassment, especially when out in public; Dylan’s heartache at losing another parent (his mother left the family 10 years earlier); Dylan accepting and coming to terms with that which he cannot fix………….. he finally steps into his father’s world and walks around in his shoes.

The movie is out on Netflix and on DVD… it’s a fun flick and it made me laugh, so check it out if you can.