dementia

It’s Today Right Now

I have new CNF piece featured at Hobart today. Read it HERE.

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(cigarette by lanier67 | Flickr – Photo Sharing!)

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The Impermanence of Memory

“Memories warm you up from the inside. But they also tear you apart.”

― Haruki Murakami, Kafka on the Shore (via goodreads)

 

Back before the Fall

Back before the Fall

On a recent trip to the doctor my mom and sister were driving home and were stopped at a red light. Plastered on the bumper of the car in front of them was a bumper sticker declaring, Joy Comes From Within.

What do you think about that, Mom? Joy comes from within.”

I can almost hear the annoyed sigh my mom must have made. “Joy come from within, huh? Well, let me know when it comes out.”

This has become an inside joke amongst us as we battle for meaning in the face of my mom’s Alzheimer’s. We will remind ourselves that joy comes from within as we laugh in the face of the depression we feel. These are the memories I will hold on to. I don’t want to remember the tears, the confusion, the sad pleas for help. I want to remember the joy that comes from within.

I have accepted the fact that my mother is dying slowly, not unlike my father. Her path will be different, but the destination will be the same. In my father’s case his body went before the brain, while my mother’s descent will proceed in the opposite order, her mental state deteriorating until the body fails. I often wonder as I watch the Deer Hill Dinner Theatre which is preferable, to lose control of one’s mind or one’s body. When I struggled through those years watching my father battle his own body after his accident, many of his favorite things in life taken from him as a C-4 quadriplegic, I could imagine no greater tragedy than being confined to a wheelchair. But having seen my mother’s sad dive into dementia, I realize that there are so many important parts of life that stay unappreciated. How many people give thanks for the ability to walk, the ability to feed themselves, the ability to remember yesterday? How many people truly understand the significance such simple actions?

Seeing the people you love suffer is not easy, but the shock is somehow eased through the process of acceptance. In the case of Alzheimer’s, what is perhaps saddest is that my mother herself will never be able to reach this final plateau of the grief hierarchy, that she will never be able to embrace her condition and comprehend the trajectory. Not only is she unaware that she has a disease which will eventually destroy the part of her brain that controls the autonomic function of her internal organs, but she has no idea that she is even sick. Another cruel trick of fate. She still calls the disease old-timers, and considers her memory only slightly hindered. Sometimes she has a moment of lucidity and realizes that something is wrong with her, but cannot understand the implication of the reasons before the moment fades away. My father was well aware of the fate that eventually awaited him, and I’d like to think he was able to accept it and move on. I often wonder if that gave him closure.

Closure is another ambiguous term that gets thrown about when people discuss grief and loss. Is it coincidence that the fifth and final step of the standard lesson format most teachers learn in their training programs is called closure? Closure provides summary and context. Closure deepens understanding through scaffolding and connections with preexisting knowledge. Closure creates a bridge between what happened today and what will happen tomorrow. Closure is supposed to be the part where the other portions of the lesson introduced earlier come into focus, leading to deeper meaning and understanding. Closure is when everything gets wrapped up in a neat little package that students can take with them. It is considered the most important part of the lesson, and is also the hardest part to get right. Unfortunately not all lessons can be so easily wrapped up with a bow. Some lessons are open ended and ambiguous. Some lessons remain ongoing and aren’t ready to be closed. I felt that if I transcribed all these memories and saw them on paper, that meaningful closure would come to me. I am still searching for it. I know it must be here somewhere.

From all this I am reminded above all that I have lots to be thankful for, but in the tumult of daily life it is easy lose sight of this fact. It usually takes tragedy to remind us of these things we should be thankful for, which ironically is a tragedy in itself. Must we really have something taken away from us before we can appreciate it? Is it that absence makes the heart grow fonder, or can we never truly see that which is right in front of us? Are we destined to lament and covet what is missing rather than exalt and celebrate the amazing abilities and relationships we still possess?

These memories of my father and mother are the memories that have shaped me, and I hold on to these memories tight, afraid to let them go. Some even argue that our memories make us, that without our memories we would not be the same person. I’m not ready to tackle this debate, in truth. But in order to prevent forgetting I will continue to write them all down, everything that makes sense and especially everything that doesn’t. I will read it over and over and try to reach an understanding of what it means. Hopefully the act of writing it all down will prevent me from forgetting. Somewhere in this act I will find closure.

Understanding now that the persistence of memory is never guaranteed, I don’t want to lose these memories, no matter how painful, because if we don’t have our memories, what is left?


 

Written for the DP Weekly Writing Challenge: Memoir Madness

I had been working on this piece to publish this Wednesday, but decided to publish a little early for the Weekly Writing Challenge.

What do you think? Any feedback, advice, or constructive criticism is always welcome.

Dinner Theatre

It seems like every time I visit my mother I arrive during a meal, usually dinner. My mom always asks me to pull up a chair to the table and eat, offering to share her plate of food with me, but I always feel as though I will interrupt the normal ritual with this little intrusion. There is something comforting in such daily routines, especially for people suffering from dementia, and I don’t want to throw off the carefully cultivated dynamic at the dinner table. I prefer to sit to the side and watch the scene unfold with the interplay of all the characters, both comic and tragic at the same time. It is truly dinner theatre. I have never tried to write a play, but I see these nightly meals as a never-ending dramatic production, filled with all the heartbreak and laughs of any gut wrenching performance. If, as Shakespeare wrote so many centuries ago, all the world’s a stage, and all the men and women merely players, then the Deer Hill Care Home dinner play might look something like this.

. . .

Cast of Characters

Mary . . . . .   woman with Alzheimer’s, walks with a cane, early seventies but looks much older
Barbara. . . . . . . . . . . . . . . . . woman with a spinal injury, confined to a wheelchair, late eighties
Ted . . . . . . . . . . . . . . . .  man with advanced Alzheimer’s, has difficulty walking, early eighties
Foster . . . . . . . . . . . . . . . . . . . . . man with Parkinson’s, confined to a wheelchair, mid eighties
Bert . . . . . . . . . . . . . . man with nerve damage and palsy, confined to a wheelchair, mid eighties
Barbie . . . . . . . . . . . . . . . . . . . . . . . . woman with Alzheimer’s, walks with a cane, late eighties
Mirna . .  . . . . . . . . . . . . . . . . . . . . . . Filipino woman with strong accent, caretaker, mid thirties
Jun  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Filipino man, head caretaker, mid forties

TIME: 4:30 sharp on any given night

SETTING: The elderly residents are seated around a large dinner table, each wearing colorful matching bibs, while the caregivers bring plates filled with hot dogs, potato salad, and steamed broccoli.

MIRNA: Bert, I have a hotdog sandwich for you. [MIRNA tries to give it to BERT]

BERT: I don’t want a sandwich.

BARBARA: It’s a hotdog, Bert. [yelling across the table]

BERT: Huh?

MIRNA: Bert, it is a hotdog sandwich. Here, take it. [MIRNA places it in BERT’S shaky hand]

BERT: I’d rather have a hamburger. [Begins eating with his eyes closed but looks disappointed.]

[JUN turns music on, Frank Sinatra station on Pandora. I Get A Kick Out Of You plays.]

TED: [Singing along with song.] Mere alcohol doesn’t thrill me at all, so tell me why should it be true that I get a kick out of you?

JUN: Ted, you know all the words. [Places a plate of food in front of TED]

TED: What’s that?

JUN: You remember all the words to the song, Ted.

TED: No, what’s that? [Points at the plate of food.]

JUN: It’s your dinner, Ted.

TED: Oh.

BARBARA: Ted, you have such a nice voice, keep singing.

TED: What was that now?

BARBARA: I really enjoy your singing. Keep going.

TED: If you say so. [TED doesn’t keep singing, but stares at his plate in silence.] (more…)

Joy Within Joy

I drove my mom to a doctor’s appointment yesterday. We are completing all the necessary tests and paperwork for her to enter an assisted living facility. Her dementia (from Alzheimer’s) has been progressing rapidly, and it is becoming quickly apparent that she cannot live by herself anymore. She can’t regulate her medications, feed herself, or do many of the normal activities necessary for her to maintain her independence. Last week she tried to open a bottle of soda water that she couldn’t twist off with a sharp knife and cut herself. This is just one of a myriad of examples.

So I drove her to the doctor to have a rash on her belly looked at, and a TB test done, and have her doctor fill out the necessary paperwork for the Board and Care facility we have decided on. All went surprisingly well at the hospital. Then on the way home there was one of those incredible moments that I cherish. An amazing non-sequitur bit of hilarious wisdom that can only come from the awful depths of irrational confusion known as Alzheimer’s.

We were stopped at a red light. The car in front of us had a bumper sticker that my mother proceeded to read aloud. While her short term memory and all sense of time have abandoned her, her hearing and vision are as sharp as ever. The conversation went like this.

Mom:  Joy comes from inside. Huh.

Me: What do you think about that, Mom?

Mom: Let me know when it comes out.

Me: Okay, I’ll keep my eyes open.

I tried not to laugh. I didn’t have the heart to tell her that it just did.

Sometimes that tiniest hint of light at the bottom of a dark well can provide a momentary sense of joy. Humor and sadness are two sides of the same coin.

Read more adventures with Alzheimer’s HERE

Sad Jokes

They would joke about it all the time, hoping it might make the situation somehow less unfortunate, less overwhelming. But it wasn’t the kind of joke that anybody laughed at. Sometimes jokes are funny because they ring so true.

This wasn’t one of those. The punchline always ended the same way.

Alzheimer’s.

Sad Eor and laughing Rabbit (by bearexposed)

When Yesterday’s Gone

A DP Weekly Writing Challenge about Emptiness

repetition into darkness — — — Fort Point Arches (by Cheri Lucas Rowlands)

Yesterday  my mom called me and asked me to buy her cigarettes. I told her no and hung up. Five minutes later she called me back and asked me to buy her cigarettes again. This time I told her that she didn’t need cigarettes because she had quit smoking. This upset her, as if quitting smoking was awful news. She told me that she didn’t believe me. She called me a liar and hung up. It took her ten minutes before she called back again.

Screen shot 2014-02-04 at 8.55.37 PM

“Hello, this is your mom,” she said.

“Hello mom, this is your son.”

“I need you to take me to the store.”

“We went to the store yesterday. What do you need now?”

“Well, your not going to like it.”

“Is it cigarettes?”

There is silence on the end of the line, as she tries to think up something else she needs besides cigarettes. “I got this letter from the DMV,” she tells me. “You know I can’t drive anymore.”

“I know mom. You tell me about it every time you ask for a ride to the store.”

“I just need some things and if you can’t take me I don’t know what I’ll do.”

“You could take the bus.” We’ve been trying to convince her to take the bus for months now. The bus stop is about 20 feet from her front door and the bus comes once an hour. We want her to be able to go to the store by herself, but the bus schedule confuses her, and she says the bus is so bouncy it makes her hip hurt.

Her sigh is so heavy I could feel it through the phone line, a sigh so deep it has transcended time and space and travelled through the wires with the electrons. “So will you take me or not?”

I calculate what will be the least time consuming option, if actually taking an hour or so to drive through traffic and take her to the store would require less time than answering her phone calls as she repeatedly calls up and asks the same question over and over, having forgotten that she just called five minutes before. How distracting will it be to listen to phone ring all day? How upset will she be when I don’t answer?

“Okay mom, I’ll take you to the store. Write it down so you don’t forget.”

“Thank you,” she says.

“Write it down, please.”

“Okay, okay, let me find a pen.”

“Write down that I’m going to take you to the store. Today, in like half an hour.”

“Okay, I got it.”

“Put the note near the phone, and I’ll see you in a little bit.”

“Okay. Thank you.”

We hang up, and I try to finish up my kitchen chores, loading the dishwasher and taking out the compost. After about five minutes the phone rings again.

“Hello, this is your mom. Are you taking me to the store today? I found this note that said Store Today, but I’m not sure when today is. Is it today right now?”

Sometimes her dementia seems so deep and existential, so enlightened. There are heady lessons hidden there. Don’t take today for granted, and remember that it is today right now. Today is a privilege. It is today right now. How unlikely to find such revelations in an existence where time is measured in cigarettes. I try to cherish these small morsels of wisdom buried in such a dark and scary place.

Of course this all happened back when yesterday was still today, and I wonder if the today happening now is at all different than the yesterday I remember.

Is today the tomorrow I expected?