Simplicity

I don’t know what it’s like to take care of a baby, but I imagine one of the joys of it is that it’s not as complicated as taking care of a teenager.  I mean it’s hard to necessarily know what a baby wants or needs because they can’t verbalize it.  Though, at the same time, their needs are very distilled.  Eat, drink, laugh, cry, poop, pee, sleep, get sick, get better.  With a teenager, the needs increase exponentially.

That’s what was on my mind Sunday when I spent the day with mom.  As she get sicker, there is an easiness to it because her needs are very distilled.  Eat, drink, laugh, sing, poop, pee, sleep, get sick, manage being sick.  And there is some comfort in that.  She is less verbal.  She parrots more than she initiates so it’s difficult to really know what’s wrong or what she’s thinking.  There is a relationship complexity that was lost and mourned, and it has been replaced with simplicity.  We do less, but we need less.  

The Roommate Experiment

Well, we gave it the old college try but once again the roommate situation hasn’t worked out.  I was optimistic that this time it might work.  There were hopeful signs that this could be the right time.  As the disease has progressed this last year, mom is slower and calmer in some ways.  She has fewer manic episodes.  And in general she talks less.  Well, that may not be true, she talks differently.  It’s true she doesn’t really initiate much conversation anymore, but she is still a talker.  And that was in the end, the demise of this current roommate experiment.

It doesn’t take long with mom to realize she talks to herself all day long.  She gives herself simple instructions out loud, “Get out of bed, Kathy,” “Turn off the lights, Kathy,” or “Let’s go to the cafeteria, Kathy.”  And she also hangs on one word at times, repeating it 10, 20, or 50 times if someone doesn’t intervene to tell her to calm down and stop repeating.  “Let’s go for a ride in the car, Kathy.  Ride.  Ride.  Ride.  Ride.  Ride.  Ride……”

Anyone can see how day in and day out of this could blisteringly annoy you.  And couple with it that my mom’s volume button seems to have broken on high, and it’s really bordering on maddening.  

I got a call from the nursing home the other day that they were moving the roommate into another room.  Evidently the nurse was two rooms down and could hear my mom and her roommate yelling at each other.  Mom was doing her instruct, repeat, instruct, repeat cycle and her roommate was screaming at her to shut up!  Which only made my mom talk louder: instruct, repeat, instruct, repeat at full volume.  The roommate tension was starting to affect others on her hall.  

The nurses and staff at the home are very sympathetic.  They realize that this is just the way her version of this disease manifests itself.  And for every Alzheimer’s and dementia patient on my mom’s wing, there is a different presentation of the disease, different symptoms, different behaviors, different treatments.  The only thing that doesn’t change is the enormous patience and devotion of the caregivers who work tirelessly to make an unfixable situation livable.  

Her doctor made some adjustments to one of her meds to see if there is an impact.  We will see in a few days.  

 

 

May 2008 – My last memory of Mom in her home.

I recently went through a notebook from grad school and found the following scribbling.  I forgot I wrote it down.  The date has been torn and hard to read, but I know the month and the year.  I think about this memory about once a week.  It sometimes makes me sad.  It sometimes makes me feel overwhelmed.  However, it always makes me feel proud of us that my Mom is somewhere she is safe, where they like her, where she receives the medical attention she needs, and somewhere that gives us peace of mind.  We’ve come so far.

 

May 2008

Mom is standing in the kitchen; hands on the counter, head down, staring into the kitchen sink. She didn’t move or say anything when I walked in the front door and up the hallway.  She just stood there like she was lost in deep thought.  She didn’t move when I stood in the doorway and gently said her name.

“Mom,” I said it softly, again.  She kept staring into the kitchen sink.

“Hey, Mom, I’ve come to see you.”  I remember trying to make sure I kept my voice level, calm, quiet, and soft.

She turned her head in my direction very slowly.  The look on her face is burned in my memory.  She looked so pitiful. Her face looked so sunken, so sad, so broken, ashamed, and lost.

We just stared at each other like we were looking for the persons we remembered each other to be in our memories.

When I close my eyes and think of my mother she is early forties, dark curly hair, full face, smiling, eyes bright, and healthy.  I imagine she closes her eyes and I am child again, maybe a teenager.

We are not those people anymore.

She has aged decades due to her illness.  Living the life of a self-imposed prisoner of that house, watching it fall down around her.  Watching helplessly as it just wastes away, unable to make it change, unable to make herself change.

I am an old thirty.  I am a bit lost.  I don’t know how to care for a mentally ill parent.  I am trying to figure it out, and make it up as I go along.  I develop a routine.  Work with brother to make a plan.  Make a contingency plan.  Make a contingency plan for the contingency plan.  Do your best.  Lay awake in your bed worrying until the early hours of the morning.  Get up out of bed and do it all over again.  It has made me an old thirty.

We stare at each other across the kitchen.  Some of the tile on the floor between us is cracked.  Some had chipped and come up.  There is a three foot oval hole in the ceiling plaster above us.  I don’t know why.  I’m not sure if the stove works.  Two of the burners are gone.  She just leans against the counter.

We stare at each other.  Maybe we are both wondering how we got here.  How did life turn out to be like this?  Where did we take the wrong turn?

She looks so broken, so pitiful.  The sick woman who was my Mom for so long just stands there breathing in the dusty air.

My mother got tears in her eyes, and then she finally spoke.  Her voice was like a raspy whisper. “I don’t want to live like this, Joey.  I….I don’t know how to make this right.”

She turned her head back down.  She stared at the sink again.  My heart broke.  I cried, silently.

The next day she would be admitted into a mental illness ward of a hospital.  It would be her second time in four months.  She would be discharged 30 days later.  I would drive her from the hospital to an assisted living facility.  As per instructions from the doctor at the hospital we would not stop at her home on the way.    Two weeks later I would move to Charleston for the summer and begin cleaning the house so repairs could begin.

It’s been almost two months and I now realize I saw my Mom in her house, in the home I grew up, for the last time.  She won’t be allowed to go back there again.  I am so sad for her, for all of us.

Barf

I try really hard sometimes to remember things about my mom when I was a kid, and I can’t. And so I try even harder. I’ll shut my eyes. I’ll turn off the tv or turn down the radio in the car and try to focus every bit of my energy on remembering what it is I want to remember, and I can’t. And I get frustrated because they are big things like birthdays or holidays or how our house was decorated. Really big things I think I should remember. And I can’t. And it pisses me off.

Then I’ll be walking down the street, like I was last night, talking to someone and the dumbest thing pops into my mind and I can’t believe I remember it. Last night I remembered being a kid and having the flu. I had that awful, achy all over, don’t want to eat or drink or do anything kind of flu.

And it’s made worse because you’re young, like 7 or 8, and you don’t don’t have much mileage on your body, so you don’t know the signs it gives you for everything. You don’t always know when your little boy body is about to barf everywhere. I remember throwing up and then crying because I’d made a big mess all over the bed. My mom cleaned everything up, got me changed into clean clothes, and she rubbed my head and kept telling me it was ok to make a mess when you’re sick.

And I guess barf memories must live in a special, disgusting area of your brain, because thinking about that story made me remember a time when my brother, who was 4 or 5, was sick and sleeping in my mom and dad’s bed, and threw up all over the place. And he was crying because it scared him. And I was laughing at him for being scared of barf. Then he threw up again, and kept on crying because he was scared, and all the while I couldn’t stop laughing. I thought it was the funniest thing that he could be scared of throwing up. And there was my mom, taking care of my brother like she took care of me, only this time she was channeling both Florence Nightengale and some more sinister spirit who would turn and tell me to knock off the laughing and get the hell out of the room because I was making things worse.

There are so many important things I can’t remember, yet I can see in my mind’s eye my brother and I barfing all over every bed in the house. It’s crazy.

And that’s what I was thinking about all day today. How ridiculous it is what I can and cannot remember. Then I remembered I’d written something down about trying to remember things…

I have an amazing friend, Susan, who I was in the Peace Corps with and who gave me some advice about what it would be like to return home from America. It seemed so wise I scribbled it down it the back of a journal I was keeping about my travels. And it seems as true about today as it was back then: “Don’t be mad at yourself if you can’t remember things you thought you’d never forget. Don’t be mad if you can’t remember people, smells, names, or places that were important to you. Some things you will lose. Some things will come back slowly or when you don’t expect them to. A lot of people won’t understand what it’s like to love something like that and then feel like you’re losing it. But you aren’t losing it. When you love something that much, you can’t lose it.”

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The Fourth

The Fourth of July is my least favorite holiday, followed by Memorial Day and Veteren’s Day. Don’t get me wrong…I’m a very proud American. I also live in DC and those three holidays are the three holidays where we have an influx of tourists clogging up the metro and coming to a full stop while driving because they are lost. Not to mention the fourth of July is HOT in DC. Always over 95 degrees and always humid.

And my mom loved the Fourth of July. When we were younger we’d always go on a picnic with other family friends. When we were older my mom would pop popcorn, drag chairs to the driveway and have the neighbors over to watch the fireworks.

And no matter where she celebrated the Fourth, my mom would call me late in the night to wish me a Happy Independence Day and let me know she’d watched the fireworks over the US Capitol on the Capitol Fourth broadcast on PBS. She’d want to know where I was during the fireworks and how much fun I had.

Wherever you are, whatever fireworks you’re watching, Happy Independence Day from my mom Kathy and me!