Tag Archives: Caretaking

Journal – past fears, future fears

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Reading about Huntington’s
Brings back memories of caregiving
The stress, the pain, the joy, the pain, the guilt
The pain, the pain
My heart aches, it’s full of love for her
But I’ve got nowhere to put it.
She knew what she meant to us.
We told her we loved her.
Remember her calling “I love you” to our backs as we left
When she finally managed to get her tongue around the words
Was it three years ago that we lost her?
Is that all?
Is that a lot?
The wound has reopened
And it feels like she’s still in the nursing home
I’m once again feeling that terrible weight
“I have to visit her, it’s been a while.”
Seeing her crumpled up
Like an empty can.

Sitting in my car
The car she gave me
The car she loved so much
She would still ask after that car
Say things like, I’m glad you have it now.
I would sit in the cab
In the nursing home parking lot
Stare at my young hands
Resting on the wheel, just where hers did
Wonder whose hands they were
Building courage, every time
To go see her
For her sake, to go see her
Because of what she did for me
Because she gave me so much joy
Because we laughed together in that car
Getting pizza, renting movies
She drove me to college in that car for a year
We gave rides to a pathetic classmate of mine
Mom scolded me for not talking nice about her behind her back
Although we were both exhausted by her unending need.
I would sit in that car
Alone now
Behind the wheel now
Despair gnawing on my brain
Dread gnawing on my gut
Knowing I would have to face her again
Face her dying again
Face her confused tears again
Watch her cough and choke again
Her hands clenched into cold blue granite
Argue away her demands for ice cream, diet coke, diet coke, one more diet coke
They said only two cokes mom… okay I’ll sneak you one more
In my childhood I said yes ma’am
I obeyed without question
It was my joy to obey
She accepted me well; I never rebelled against her
Until she was dying
Then
I finally learned to tell her no
I’d spend an hour
Either fielding her demands
Or talking her down from a mental precipice
On good days, I just got to listen
As she rambled through her own fanciful mind
Picking gems here and there for me to examine
Her imagination truly unfettered.
Every day hurt.

I’m going to have to go through it all
All of it
Again.
The spiral is coming back around
And points this way.
It’s still far off
Barely visible on the horizon.

Well
I’ve done things I’m afraid of before.
I’ve gone to the dentist
I went and went until I wasn’t afraid
I’ve taken the worst they can throw at me
And trounced that fear.
I’ve ridden roller coasters
I’ve jumped from great heights
I’ve walked alone down dark hallways with the lights off.
I visited mom.
I can face fears.
I can face reality.
I can face grisly horrors
I can face and embrace the darkness.
Shit happens.
We all gotta die.
We all gotta lose someone.
It’s okay to be scared
But being scared is a waste of precious time.
I am strong
I am brave
I can take a lot of fucking punishment.
I can take a lot of grief.
I can take a lot of burden.
I’ve been there.
I will be there again.
I’ve been well taught
How to bear things with stoicism and grace.

 

 

 

 

 

 

 

 

 

 

Another one for Mom

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Mom

Was it four years ago

Only four

When you were in the kitchen, insisting on helping with the dishes

You took so long

Running the disposal dry for minutes at a time.

 

Was it three years ago

Only three

In the cold, you in your green trenchcoat and walker

And I took you to a Chinese restaurant

For your latest obsession, orange chicken.

You hugged the waitress and told her you loved her.

 

Was it two years ago

Only two

When I was feeding you ice cream in bed

Sugar free, but we didn’t tell you that.

You ate it all, every time if I let you.

You told us you weren’t sick.

 

Was it one year ago

Only one?

We’d asked you if you were done with meds

And you nodded an emphatic yes

One of the last things you said.

We held your blue fingers

And watched you fade.

 

I miss you

I miss you

I hated to see you suffer

I was glad you got to go

But I still miss you.

Days go by

I’ve made new friends

I’ve found new joys

I am blossoming in new ways

You would be proud

You were always proud.

I haven’t missed out on anything

But I miss so much.

 

You were always easy to talk to

You knew things

I bet everything I have uncovered for myself

You already knew.

 

 

 

 

 

 

 

Caretakers

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You can recognize them once you know how to look.

Their shoulders dragging intangible weight.

They are pale and doughy

Living off of pre-made meals and energy shots.

They have dark lines under their eyes

And smiles underlaid with sadness.

They mulishly take blows

Sharp words that cut too true

Abuse that only family can give.

They can whip their way through hideously complex paperwork

Without blinking.

They can make decisions

Hard decisions

Pop a Rolaid and move forward.

 

They are bound, bound

Earthbound

Emotionally bound

Bound by duty

Bound for destruction

Sick with dread

Awaiting the day of freedom

Which carries with it

Their greatest grief.

 

Fading

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I am an old woman.

I have a history. I have had a beautiful life. It’s made me the strong person that I am today.

We went hungry. For a while my husband and I were eating roadside dandelions and bad cheese from the deli garbage. During this time I got pregnant. When I found out, I cried.

I had four miscarriages and four children. A soul lost for each gained. Our marriage survived it all.

I got a job selling tickets to the movies. Ten cents a pop.

Then my husband got a good company job. I quit working and spent more time taking care of the kids. I watched them grow up. Watched them make mistakes, fall in love, get jobs, fail out of school, neglect their health. I watched them gain scars as I did, earn wrinkles as I did. One of my sons nearly lost his leg in a motorcycle accident. We held his hand in the hospital. My other son got arrested protesting. We bailed him out. My daughter married too early and fought with her husband, until my grandkids had to go through a divorce. They lived with us for a while.

Every day my husband says he loves me. Every day I make him breakfast. He fixes the plumbing. I remember birthdays. We take care of each other.

My scars make me who I am. I have seen so much. I have lived a full, rich life. Everything I’ve been through has given me a bottomless well of strength. My arthritis is painful, but I don’t really mind. My hip is like fire. Some days my hands ache so badly, we just eat store bought muffins for breakfast. But I remember the old days; we are lucky to have this food. It’s an easy life. Pain is part of living, and every day I have left is a blessing.

 

I am an old woman.

My memory isn’t what it used to be. I write down birthdays, but they keep slipping by me. It’s hard to keep track of what day it is anymore. The calendar is always marked up wrong, I get tired of fixing it.

My husband is very patient. Sometimes I forget to make breakfast. Sometimes I am so full I suspect that I made us two breakfasts, but he doesn’t say anything. The kitchen is a little more disorganized than I like it lately.

My children don’t visit very often. They always protest and say they do. Maybe they do. Maybe I’m just complaining. I don’t want to be any trouble so I try not to complain too much, but I can’t help missing them. I want to see their bright little faces. I heard one of them got married? I’m not sure which. I get them mixed up when thinking back, but when I see them it’s alright. I just haven’t seen them in so long.

My husband looks a little worried. I think whatever’s worrying him is aging him too fast. I hate to see him suffer. Maybe I’ll cook him something nice tonight; that always cheers him up.

 

It’s frustrating, living in the house with this old man.

He’s like a warden. Today I was done visiting and went for a walk back to my own house. I know it’s in this neighborhood. He chased me down and brought me back here. Nothing happens, I just get so antsy!

The kitchen is in disarray. He rearranges everything. Nothing is where I put it. It’s like living in someone else’s house and never getting past the house tour stage. What kind of devious person would keep moving the silverware drawer? I want my own house back.

My hands hurt. My hip hurts. Sometimes I forget and move wrong, and then the pain hits me, hard.

I miss my parents. I miss my sister. Sometimes people visit me, people I don’t know, and they claim to be family. I pretend I know them because they seem so sure, and I don’t want to hurt anyone’s feelings.

I cry a lot lately. Nothing makes sense. I yell at the old man. He laughs like it’s nothing to him. What a bastard.

 

Ah…

Who is this holding my hand? An old man… he’s crying? And a few other people.

I am hooked up to machines. It’s hard to breathe…so hard to breathe. I must be sick.

Oh no. Everyone looks so sad. The old man is crying for me.

Don’t cry. I don’t want you to cry. I hate to worry anyone.

But I can’t talk. My breathing is too weak; I’m wearing a mask over my mouth and nose.

I don’t know how to handle this. I can’t take it.