amylodosis, cardiac amylodosis, caring for parents, dad, daughter caregivers, death, Uncategorized

Still not Ready, Dad

What does your dad go by? Joe or Joseph?

The hospice nurse leans into the hospital bed that sits in the corner of his bedroom. I stand at the foot of the bed feeling defeated because I just couldn’t help him feel better. The damn Amyloidosis sprinkled the bad proteins. The chemo sucked. The pot didn’t increase his desire or ability to eat. God was out of miracles because Joe won’t be lacing up his golf cleats to cut the grass next weekend.

Joe. Right, dad? Just call him Joe.

Dead. Man. Walking.

Dad eeked out that one liner in short, exasperated breaths.

Dad, don’t say that. Plus, you’re not exactly walking.. So…Not necessarily an accurate description of your current state.

I usher the hospice nurse out of the room and can tell she doesn’t really get our sense of humor.

Again, this being The House of Horrors we tend to call it like we see it.

Do you think he’s seeing people? Having visions of people? He just said dead man walking, so I am just wondering. People who are transitioning sometimes see people.

Transitioning? Say the word, lady. He’s DYING.

No, he’s just kidding. Trying to make a joke. 

You know, to cope. To deal. To accept. 

Now, I could go into the details of Friday, but that would suck. Needless to say according to the a-little-light-reading-that-you’d-rather-poke-your-eyes-out from When Death is Near: A Caregiver’s Guide, Dad wasn’t supposed to peace out so soon.

But he was ready.

Again, me. Not so much.

I can hear him now. What are you going to do, Jod? All you can do is accept it. Your Mom and me did everything we could for you kids. You did everything you could for me. It is what it is.

But I don’t want to accept it. Isn’t that crazy? I just want my Dad back. I’ve accepted Mom’s fate long ago. But to take Dad first? Fucking cruel.

Oh, I digress. Needed to vent for a bit. Yikes.

If I conjure up images of Dad in that bed unable to be all things dad, well that bitch grief takes over and I turn into a puddle on the floor. Fetal position and all. My mind knows that he is up in heaven playing a round of golf with Bob and Bruce. That he’s eating his rainbow sherbert straight out of the container and following it up with a chocolate chip cookie from Costco. That he is out enjoying the sunshine, working on projects involving wood, meticulous measurement, always moving, always working.

Fingers crossed he’s got Frank Sinatra on, tapping his foot waiting for his Rosie.

Cue it up Dad. Work on those dance moves. Mom needs her favorite friend to take her for a spin on the dance floor.

AARP, alz, alzheimer's, amylodosis, caring for parents, dad, death, family, grief, memoir, Uncategorized

Tough Love

nurse ratched

What is this?  A conveyor belt of pills?! Fuck. Fuck. Fuck. Jesus Christ, Jod. I gotta take all these pills?

Dad asks in gasping breaths after he appropriately massages his face. A sure sign of disgust and aggravation we all know well.

Unless you wanna die sooner, yea you gotta take these pills, Dad.

Is this the last day?

No, one more after today.

With his weight down to 149, Dad’s hazel eyes have become more prominent in his sunken face, especially when he’s exasperated. It’s funny, Mom keeps commenting on his beautiful, blue eyes when she sees him downstairs now. As I sit here next to him, they are very much hazel. And they are communicating confusion, annoyance, and helplessness.

In this moment he reminds of the character from The Fly Guy books my kids love. A bulging eyed fly with a cape. Except Dad can’t fly.

Maybe I need to look at this pill situation we have downstairs. Are you sure you got this right? I feel like I just took these pills earlier. All I am doing is taking pills. I swear I took 18 pills this morning. 

Oh, joy! Dad is micromanaging me and second guessing my stellar home-health-care-babysitting-medication-management-skills.

Hmmm. That’s a tough one. Since I can’t read the directions on the pill containers or count using simple math…You’re right, Dad. I might just have fucked up this already fucked up situation even more. THANK THE LORD you are on top of things!!!

I scream and flip the plate of pills on the floor and stomp my feet while giving Dad the finger.

Just. Kidding.

I have become the best primary teacher I know channeling immense amounts of humor and while practicing my inside voice.

Dad, you’re killing me here. (the irony of that statement is not lost on me). I didn’t even give you your diuretics and heart meds today because you are freaking out. Hate to tell you, but you are getting fewer meds than you’re supposed to which makes me a bad nurse.

Jessuuussss Chrisstttt. What exactly are all these pills doing for me? I feel like absolute shit. Death warmed over.

Here’s where things get tricky, folks. Sometimes Dad forgets what is really going on with him. The tick-tock of father time is a bitch when it comes to the rare disease he has. We could tip toe through the tulips and pretend that things are all sunshine, roses, and rainbows, but how is that helpful or honest?

So I just say IT.

“These little pills are fighting the proteins that are trying to kill you. We can scrap it, but then you’ll just die sooner. Rather than later.”

Silence. I hand dad one of the eight chemo pills he has to take and a glass of water.

Take a big sip and tilt your head back. Then swallow, Dad. You always forget to tilt your head back and that makes things harder on you.

One down. Seven more to go.