AARP, alz, alzheimer's, amylodosis, cardiac amylodosis, caring for parents, courage, dad, daughter caregivers, death, death and dying, dementia, family, fear, featured, grief, loss, memoir, truth, Uncategorized


April 4, 2018

I’m still in the middle of the gone as the anniversary of my father’s death nears. Some nights I wade in the grief around 6 pm when PBS NewsHour comes on and the seat next to me is vacant. There’s no 2 oz of Dewar’s to measure in the shot glass and pour into his insulated glass with just enough ice, a cherry, and a splash of bitters. I don’t go to the pantry to fetch a Rykrisp and spread the thinest layer of Merkt’s on it like I used to a year ago. No, Jod, can you get me a spoon? so Dad can fish the cherry out of his glass.

God, how I miss the rituals. Those rituals though make the gone so fucking difficult.  I wish I had an imaginary box of each ritual or small moment in the closet to unpack so that I could select one each time I get sad. I’d layer on each memory as if preparing for a winter hike in the Northwoods. Whether it be an imaginary box of small moments or a movie in my mind, these bits of magic–they are here with me–even though he’s gone.  Sure, some days that consolation prize feels as fantastic as the Mr. Coffee they’d give to the losing contestant on The Match Game, other days I am grateful it for the blessing it is.

Either way, I acknowledge the gaping hole that is the gone. Shit is different. I’m different. Everything is different. Loss creates this hole where substance once was. Be it a relationship, a job, a friendship, an activity, anything that was once a part of your identity–if now gone--you might feel like you need to plug the hole with a shitty wad of Double Mint gum that won’t conform because the loss is too real, too raw, and too recent. What’s the saying, “Time heals all wounds?”

That’s bullshit.

The gaping hole changes form a bit. It may scab over or shrink a little as life continues and you figure out how to live with your respective gone. The thing is you might not be 100% healed because you’re not 100% YOU anymore. You’ve changed. The gone changed you. It had to, didn’t it? Unless you are a completely soulless individual (which you clearly aren’t because you’re reading this book), loss changes people. That’s the gift like a  plate of fries next to the shit sandwich that grief served you with your gone. Get it? And now you’re standing in the kitchen with this shit sandwich of grief, but you’re still here-standing. You acknowledge the hole next to you where the ritual was or the memory or the person. You see it. You feel it when you need to or want to. Some days you take down the box and try on the memories like preparing for that hike in The Northwoods. Other days you praise The Almighty for a heaping hot plate of fries next to that grief sandwich and keep it movin’. The fries so tasty, you might not even take a bite of that grief sandwich, not today-anyway.

5 second rule, alz, amylodosis, cardiac amylodosis, caring for parents, courage, dad, daughter caregivers, death, death and dying, family, fear, grief, loss, mom, truth, Uncategorized

The “F” Word

The pictures that Dad taped to our outdated fridge have started to curl and bend. Circles of scotch tape have become more prominent than the pictures they are supporting. Pulling a couple off the fridge to do some triage I consider tossing one in the garbage. I love the picture, but I have zero patience for the woman staring back at me.

I shake my head remembering.

Me in my green t-shirt and a little black eyelet tank I’d gotten from this trendy, now shuttered store on Damen Avenue and Dad in a red striped Pokegama golf shirt he’d bought on one of his latest golf trips smiling for the camera.

A crowded room of friends in a bar whose name I can’t recall, drinking Miller Lite and toasting a move to North Carolina.

Hindsight being 20/20, I’d have suggested that my former self get a new pair of glasses and a lobotomy prior to leaving Chicago with a man she met a year prior. What a fool I say. Negative self-talk for the moment be damned!

Sure, I knew him. But do you ever really know someone?

People only reveal what they want to sweetheart, I’d have told my former self.

Some are lovely, lovely people. Others are complete pricks. I plucked a prick right off the rack. Tried him on, but didn’t read the label. And we moved to North Carolina where my life unraveled.

What complicates matters further, is that at 30, I thought and thought and agonized about being just past 30 and unmarried. The thoughts turned into a college-ruled notebook of fears: Fear of being alone, fear of being single forever, fear of not having babies, fear of never having my parents meet those babies, fear of never having dinner parties with the other marrieds-you get the idea. And on and on and on.

The faith I carried like the most curated protest sign in my 20’s had been blown to bits by the looming fear in my 30’s.

I’ve been thinking A LOT about fear recently. How fear became a houseguest and overstayed its welcome. Fear took a seat, ate a meal, did the dishes, came back for seconds, and took a long damn nap.

Fear is a motherf**er.

It was impossible, literally impossible for me to listen to my intuition because I made the decision to not be single. Checking my rear view mirror, love had zero to do with it. 

It was the “F” word. Fear.

Fear of my future. Fear of being the last of my single friends. Fear of no one ever loving me. And on and on.

I got a list, ya’ll.

Pushing the mute button for an extended period of time on instincts can do a number on the head and heart. My intuition, the knowing--an unbiased, unemotional assessment of the present, was outmatched by fear.  And when that happens– it sucks.

Reminds me of an episode of Seinfeld titled “The Opposite,” in it George decides that every decision he has ever made in his life has been wrong.  Jerry says, “If every instinct you’ve ever had is wrong, then the opposite would have to be right.” Therein George goes about his day doing the opposite of what he’d normally do and has better than average day.

Haven’t we all been there? So confused by outcomes of actions taken that we begin to question even the smallest decision.

Just pull a George Costanza.

Tried that a time or two!

But life can be like that. It’s like acting out of fear versus love messes with the equilibrium of the universe that surrounds you or something.

Acting out of fear is easy–especially if you’ve confused fear with intuition and your intuition has ear muffs on. Courage, man, it can be hard to conjure.

So what would I start by telling my 30-something self in this picture?

Well, I’d tell her this: Her life didn’t start unraveling in North Carolina like I said earlier. Nope. The analyzing, agonizing, and the thinking and overthinking created enough self-doubt and worry that I said YES to fear which propelled me into a series of bad decisions–well before North Carolina.

Dad likely knew it’d be a shit show when he met the man and I floated the idea and he tried to tell me, but did I listen? And Mom? She would’ve said, “What on earth are you doing? Haven’t I taught you to love yourself enough? Walk. Away.”

Yet, the list of fears that were once just thoughts prevented me from acting on the thing I needed the most: Courage. Because I was so in my head I wasn’t listening to my heart. My instincts had ear muff on, remember?

There’s a quote I’ve read and reread recently in Mel Robbin’s book, The 5 Second Rule that almost knocked me outta my chair when I read it. In the book, Mel writes, “When you act with courage, your brain is not involved. Your heart speaks first and you listen.”

Two of the most profound life-changing decisions I’ve ever made in my life I made in less than 5 seconds. It’s true. I hadn’t realized it till reading Mel’s book.

Life changing decision #1:

I moved to New Orleans in 2011 with a packed car, a $28,000 pay cut, and zero friends.

Life changing decision #2:

I moved back to Chicago 7 years later to care for my dying dad. Left my career, my life in New Orleans, and had no real plan aside from taking care of my Dad.

Here’s the thing about those two decisions: I never hesitated.  There are a million reasons why I shouldn’t have moved to New Orleans: Hadn’t taught in years. Had a great pension and job in Chicago. I was too old to have to make new friends. Did I mention I took a $28k pay cut? So, yea the list was L-O-N-G.

But the thought bubbles full of question marks and exclamation points–they never came.

I just acted. I went with it.  There weren’t lists of worries and self-doubt like before North Carolina. My heart was propelling me to go. And I listened. And you know what? I fell in love with New Orleans. And I made wonderful friends. And had a respectable career. And drank a sh*t ton of purple drinks.

Then, when I got the call during a teacher meeting that my Dad had been immediately admitted to the hospital at a doctor’s appointment, I remember turning to a colleague saying: I need to go home. Now.

No hesitation.

So I did. And it was hard. And beautiful. And then hard again. And here’s the thing: I have these teeny tiny moments with my Dad that makes the paycheck and job title just not that significant. 

Middle finger and ear muffs to the “F” word.

I choose courage.

I hope you will too. I really do.








AARP, alz, amylodosis, cardiac amylodosis, caring for parents, dad, daughter caregivers, death, family, grief, memoir, truth, Uncategorized

That B*tch Called Grief

I cradle Dad’s pillow and push it into my right ear as I lay on my side staring at the bedside table that’s now empty.  Gone are the bits of the pot-infused chocolate chip cookies. I can’t do anymore, Jod. He’d say. Food is life, Dad. You don’t eat, you’s gonna die. Sometimes he’d come back with: Yes’a boss, Yes’ a boss. And take a tiny piece chewing it in silence. Our banter always left me with the widest smile.

But at the end-the exchange wasn’t quite like that.

Greeted with peer pressure to consume, he’d raise left index finger in silence, signaling me to cool it with the talk. Then, raise his right index finger to his throat making a saw-like gesture back and forth. Message received. Lay off the request for me to eat, kid. Defeated, eventually, piles of small, white plates lined that bedside table with the cookies he couldn’t eat.

Gone are the glasses that no longer needed to be found because its owner was confined to bed. No more, Well, I am on my daily hunt for my glasses. God damn it if you ever know where they are, Joe. Jesus Christ, it is infuriating. Absolutely infuriating. I tell you.

Gone is the insulated glass with water and just the right amount of ice so it’d be the right amount of cold for Dad. Never a water drinker, Dad would sit on the edge of the bed sipping in silence. At the end, it took too much energy to talk and drink. He had to pick one over the other.

It’s been three months since I played nursemaid to my Dad. Three damn months. And this bitch called grief, she ain’t going away.

So, in order to be proactive, I come for her well before she sends for me.  Climbing into bed with Rosie I push my face into Dad’s pillow and bitch at myself for washing this pillow case in the week that followed his death.

I want to remember his smell.

Through the months during and after Dad’s illness and death, I’ve learned to be quite the efficient crier. Sobbing is limited to the car or the upstairs bathroom once a week or so. In Mom and Dad’s bed, I allow the tears to come in spurts like a midday rain in the summer. Through the silence, sometimes Rosie will say, I hope it gets better for you because I like you. And we lay there together, Mom staring off into whatever her reality has created and I now scared that Dad has forgotten that I am down here wading through shit piles of grief, fear, and uncertainty.

And then this morning I realized something. Whether we be among the living or the dying, not a single one of us wants to be forgotten.

Yep, this 44-year-old woman is worried that her dead Dad, who is no longer physically present, will forget her. She can’t even see him or hear him yell, JJJJOOODDDDDIIIIIII, I need you.

But she’s petrified that he will forget her.

Insane. Right?

God, but it’s the fucking truth. And, in truth there’s strength, so I’m putting it ALL out there today.

This realization reminded me of Dad’s eulogy. It gave me great comfort and pause in writing it and sharing it at his service, so I say, what the hell and share it here with you now.

A couple weeks ago, our dad sat perched on the edge of his bed, his blue, yellow, and white striped bathrobe now much too big for his 145 lb frame. His bedroom had become a gathering place for us kids because Dad spent most of his day now in bed. And we ALL know that Dad was ALWAYS on the move, So to be sick, unable to do all the “Joe” things he’d do was torture for him.

In the dark with the hall nightlight on, his kids sat on the edge of the bed with him and he said something that broke our hearts a little.

It was a simple statement. He said:

I don’t want to be forgotten.

Looking out at all of you here today-buddies from Marquette, fellow Evan Scholars, members of the Western Golf Association, former colleagues, family, friends, neighbors, of Dad, Rosie, and his children,-who have come here today to pay your respects and honor Joe, I know it is virtually impossible for Dad to be forgotten. Think of all those long-winded conversations you’d have with almost complete strangers, Dad?

How could our Dad ever think being forgotten would be part of Joe Arndt’s story?

Each and every one of us has these stories that make us who we are. As a teacher and a writer, I always tell my students–Be sure to tell your story. Be proud of your narrative. Write down those seemingly small moments. Share them with others.

So today. with so much humility I attempt to tell a small portion of our dad’s story. Being a visual learner, I thought it prudent to include some of Dad’s favorite tools as a way to illustrate his story.

Tool #1: Take this Folding Carpenters Ruler. To some, you might use it to measure wood planks, maybe to then build something. I mean, it’s a carpenter’s ruler. BUT… for our Dad it was a tool he used with his morning Strawberry Cheese Coffee Cake. Crouching over the long strip with his green golf pencil and ruler in hand he’d make tick marks along cardboard to mark 16 1 inch slices.  When asked why, “Why not? I want even slices. “Everything in moderation, kid. That’s all I allow myself.”

The lesson: Do things in a way that make sense for you. If no one understands, so be it. No need to always explain yourself–even if your kids or anyone else–give you a hard time. 

Tool #2: While Dad was NO lover of the computer, the man LOVED him a spreadsheet. Making burgers up at Aunt MaryAnn’s cabin? Yep, there’s a spreadsheet for that. And the spreadsheet that you then nail to the tree so you make sure the correct cheese is on the correct burger. Analyzing individual golf scores of your fellow Evan Scholars so you can make informed gambling decisions?  You betcha. Binders and binders of spreadsheets spanning years and years. Organizing your charitable giving by letter grade? Come tax time, you know Joe did that too. Down to every last detail, Dad prided himself on exceeding expectations. Whether it be to ensure he and Rosie had all their cross country gear, snow shoes and all-He’d make meticulous notes and create spreadsheets to ensure nothing was overlooked.

The Lesson: Give 110% to everything you do. From making burgers to organizing a golf tournament, give it your all. People will remember and appreciate the effort and care you take.

Tool #3: From file folders, to one of Mom’s toothbrush that says “Rose 6/16/16” you’d be hard pressed to find something that DOESN’T have a label on it @ 1202. Take the dryer for example. There are 5 labels on the dryer that read, “Don’t ever even think of putting anything on this dryer!”  Can you just see Joe now, slapping his forehead and massaging his face because one of his kids clearly left the laundry detergent the dryer, which then caused the blue liquid detergent to make an impromptu pool on the laundry room floor. You just know–after mopping up that mess with old undershirts and underwear, yes that is what he called old rags, he ran into the dining room to find the label maker. Likely using language that you’d hear him shout on the golf course.

The Lesson: Say what you mean and mean you say, but do so with heart, passion, and honesty. As Chole, Joe’s granddaughter reflected, “Grandpa can be tough, but he has a soft side.” 

This brings me to our last tools. Plural. It’s fairly straightforward. Dad would be lost, lost lost, without his pencil, his random scraps of paper, and his piles of mail from every non-profit under the sun.  I swear any construction, excavating, bridge building company that ever existed —and Dad has a pad of paper with that company’s name on it. Literal mountains of paper and mail would greet me each time I flew in from New Orleans. Possibly boarding on hoard-ISH tendencies. Love you, Dad.

Love you, Dad.

From handwritten notes laid at the front door to remind Mom of his Saturday tee time and estimated arrival home, to letters to the Minnesota Court Payment System to dispute a speeding ticket, scraps of paper and cups with golf pencils and highlighters dotted any available table in the house.  Those scraps were action plans for Dad. He used them to plan out his words to Mom before he’d write in her birthday card, he’d grab a scrap to write down directions after plotting his course on one of his beloved maps, and lastly insert them into his CharityWatch bulletin–because he only gave dinero to those organizations that earned a B or above. He’d even mark the mail. I swear I can’t make this stuff up!

As I write this, I am realizing it all came down to Dad doing things with such passion and conviction for those things and people he cared deeply about.

The Lesson: Be generous and loyal to those things and people dear to you. Take time to pause, reflect, and live a life with purpose and conviction.

SO Thank you, Dad, for giving me the strength and courage to speak about you today. I hope my words paid tribute to the father, husband, brother, uncle, friend, golfing buddy you were to each and every one of us. I hope your children and grandchildren continue to make you proud, to live by the examples you set for us.  Rosie and your children will continue to honor you and your story by loving one another fiercely, by giving 110% to all that we do, living principled lives full of purpose and passion.

With all my heart, I love you, Dad.

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, amylodosis, cardiac amylodosis, caring for parents, dad, daughter caregivers, death, family, grief, memoir, truth, Uncategorized

A Little Birdie Told Me





Well, damn I am so sorry to hear about Joe. They certainly don’t make ’em like your dad. He was out here on the golf course every single Friday–for I don’t know? Years? Before he’d take your mom with him in the cart, but I guess when she got too sick, then he just came alone. He’d spend the whole day out here, you know? Going from wood duck box to wood duck box. I never did ask him how he started making these boxes. I just never thought to ask…He loved those birds. God, he kept a log book documenting the condition of each wood duck box, the number of eggs hatched, which ones were being visited by the birds, the ones that needed more cleaning…I just don’t think we have anyone that can take care of these birds and his boxes like your dad, Jodi. 

Like my dad. The list of things that no one can do quite like my dad is just too long to share here. We don’t have enough time to recount all one liners, exasperated exclamations, and meticulously sometimes maddening behavior that is our Joe.

You see, our dad, he is dying.

And so, it would happen that last week a pregnant robin sat contently perched in a nest that could barely contain her expectant belly outside the kitchen window.

I have never seen a bird build a nest here. This is unbelievable. God, the universe, whatever is watching and listening to the happenings in this house of horrors. $100 says this young mother will give birth just as dad dies. I swear to God. This is right out of The Alchemist. It’s an omen. 


Katie, Jaime, Meghan, Holly, whichever sister was helping me run the show at the little place we lovingly call The House of Horrors has seen the young mother too. A head shake and a smile follow such a noticing. Oh, how the appearance of this little bird has brought us comfort amongst all the grief. Always one with the sunshine and sparkle, sister Katie coined the phrase House of Horrors in response to the accidents, the amyloidosis, the Alzheimer’s, the sequence of events that confront us.

One of my old teacher friends, Ms. Jaffe used to say, “When confronted with a pile of shit, do you walk through it or around it? It seems like you often walk through it, Arndt.”

Oh, Shelia how you knew me well. So right now, we strap on our boots and wade through this pile of shit with an expectant robin doing her best to watch and wait to give birth. Until we are ready.

But are you ever ready?

The damningly beautiful, yet sad cycle of life.

So much love for you, dad.


AARP, alz, alzheimer's, caring for parents, death, dementia, family, memoir, mom, truth

Roaming Rosie Strikes Again


The amyloid plaque tangles have created two dueling personas inside Mom’s brain. On the left, our beloved Rosie Posie; on the right a scared, but forever fiesty woman who often accuses her children and others of commiting heinous acts against her.

What a fucking shit show. That, my dear, is what I was thinking when I got a frantic call from Li last week.  On one of Mom’s escapades, she paid ZERO mind to the barbed wire fence that is supposed to keep trespassers like herself out of Arlington Lakes Golf Course. Instead, she opted to enter the course through a breach in the fence and onto the golf course she roamed amidst golf carts, golf balls, and um, well a myriad of foursomes on the tee.


Li: Jodi. OHMYGOD. You have to come. Your mom, she’s on the golf course. Jesus. She’s by the water.

Me: What? Fuck. Where are you?

Li: I don’t know. She went walking. Wouldn’t stop. I think we are by Harvard/White Oak? I don’t know. We are in the trees.

Me: Fuck. Jesus. Ok. I’m coming.

Mind you, when I took this call I was sitting in a teeny tiny cube @ The Arlington Heights Senior Center with this nice woman from Catholic Charities. I had just turned in my FMLA paperwork and wanted to find out about applying to be Dad’s full-time caregiver, but I digress.  One story at a time.

I thank the nice woman and she assures me there is no explanation necessary. After all, I was basically sitting on her lap in her cube. She heard the entire exchange. She hands me a piece of paper with phone numbers that I will never use for a stupid idea that doesn’t even matter and gives me a look like Good-God-What-are-you-doing?-and-damn- I -feel -sorry- for-you.

Nobody got time for a pity party. Now a shit show, though…..Plenty O’ Time for that.

Remember, I’m just doing the doing. Today, the doing requires me to persuade Mom to come home with me.

Joooddddiiiii! We are here! Joooodddiiii!! 

I inadvertently drive right by them. Making a 3-point turn in the middle of White Oak, I pull up and there is Mom. She reminds me of one of those little people statues you place on top a wedding cake, except without the gleaming smile, clean, glossy hair, and pretty dress. Mom’s face a mix of fear and confusion, the concrete stoop her pedestal.  The barbed wire fence her cage.

Oh, Hi, Mom.

I make sure she can hear the smile as I speak to her.


Her greeting communicates she is OVER IT. Zero fucks she cares to give me or anyone else in that moment. She says hello because even with her memory gone, she is always polite.

I want to go HOME!

Now, there are three problems with that request:

  1. Mom is pulling and banging on a barbed wire fence which will not make an exit easy
  2. That fence has a lock on it that she tussles
  3. She is surrounded by trees with no clear path out

Mom, you are going to cut your hands. The fence is sharp. PLEASE Mom. You gotta stop grabbing it. I want to take you home, but you can’t get out this way.

I don’t care if I cut my hands. I wanna go HOMMMEEEE!

Li is busy negotiating with Mom to follow her through the bushes, but Mom is not having it.

I am not going with you! You are a bad woman! You keep hitting me! 

The allegations of abuse continue. I literally have no idea how I will get her home.

I am starting to get scared. Mom is strong and pulling at the fence with such force, I am not sure how she’s not cut her hands yet.

For the first time since the inception of this disease, I consider calling the police on my own mother. I don’t see a way out.

She beats me to the punch!

I‘m gonna call the police on you!

Mom, well that’s funny. I was thinking the same thing. I don’t want to have to call the police, but you have to calm down. Li is trying to help you.

I stand opposite of Mom with the barbed wire between us.

Don’t tell me what to do. I don’t have to calm down. You are so mean to me. I hate you!

With this disease, every day, every moment is different. Some days are better. Some days are a hell I wouldn’t wish on anyone. Today, I’m realizing that I’ve made the situation worse. She is escalating because I am trying to reason with the version of herself that makes such a hearts, stars, rainbows ending highly unlikely.

Li and I agree that I get into the golf course and attempt to lead Mom out. So,  I drive to the opening in the fence and walk the 18th tee before getting to Mom and Li. I imagine golfers are like, WTF? But, whatever.

The fun and games continue.

Look, there’s your daughter, Jodi. She’s come to get you, Rose.

Hey, Mom. Let’s go home, ok?

In this moment, I try to imagine what my Mom sees and feels. From her perspective, atop the concrete stoop, there is a mess of bushes, sticks, trees, with no discernable way out. She is in unfamiliar territory with people she doesn’t recognize. And I am asking her to take a leap of faith and trust me.

I pull her. She fights back.

I stop. We are quiet. Mom’s panting. She is beginning to get tired. Being afraid takes energy.

Just then, I channel Dad and am reminded of what he would say to her when she is struggling.

You’re doing good, Mom.

You’re doing real good, Mom.

You’re ok.

That’s right. You’re alright.

She hesitantly takes my hand and I lead her out of the trees.



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.