AARP, alzheimer's, amylodosis, cardiac amylodosis, christmas grief, dad, daughter caregivers, death, death and dying, dementia, family, grief, loss, memoir, Uncategorized

Rejoice: You made it out alive

 

The knocking of the 1980’s refrigerator serves as a reminder that I am not alone when I am my most depressed. The birdfeeders out in the yard hang and sway content with the charcoal sky that seems to never turn blue here.

When the ice falls in the freezer I jump a little and turn my attention to the family photos that dot the refrigerator. Heat and neglect have caused old memories to bend and curl.

The tape mere decoration.

The kitchen clock, off by an hour, ticks and tocks as it always has since Mom and Dad bought this house in 1975.

Sometimes, in moments of sheer desperation to remind myself of my father, I turn to channel 216 and hear Wolf Blitzer tell the latest Trump tale that makes the crease on my forehead even more pronounced.

The Make America Sane Again baseball cap on the shelf mocking me from behind.

It is in these mundane moments of the day that I miss my father the most.

So I hide my unkept hair under his mint chocolate chip green Pine Meadow winter hat as I take out the garbage.

Or I scream, Goddammmmnnn it, Dad! when adjusting the logs in the fireplace because his goldenrod yellow fireplace gloves have a hole in the thumb. That hurt. A Lot.

And most mornings I make my way up to the exact spot where he laid in his hospice bed for two whole days.

I turn on the light by where he left us all last May, lace up my gym shoes and set my timer.

Then, I pop my earbuds in and Sia is reminding me what I need to remember:

But I survived
I’m still breathing, I’m still breathing
I’m still breathing, I’m still breathing
I’m alive
I’m alive
I’m alive
I’m alive
I found solace in the strangest place
Way in the back of my mind

And yea, I breathe.

And remain hopeful.

And grateful.

AARP, alz, amylodosis, cardiac amylodosis, daughter caregivers, death, family, grief, loss, memoir, truth, Uncategorized

My New Now

I don’t have dreams about my Dad like my sisters do. Even Li, Mom’s old caregiver says he hugged her in a dream last week.

Oh, Jodi. I had to call and tell you because I know how much you must miss him. Especially now. He was a good man, your Dad.  He was gone too quick. Much too quick. I miss him! God, how I miss him screaming all the time about losing this or that. I got used to the screaming, you know? Or him telling the people on the phone that he was an old dinosaur…

It’s easier to just rest my left hand over my eyes as I listen to Li remember Dad. That way I can mop up the drops of saline before they slide down my face.

..but he hugged me in my dream and I thought of you. I know it must be really hard right now. 

Right now.

Right now being this very second? Right now as I watch Dad’s arch enemy the backyard squirrel dig for nuts and tear up the greenery?

Right now being–Every. Single. Day.

Little does Li know that I blotted pools of saline mixed with under eye concealer with the kitchen towel an hour prior. Or that I shouted, God damn it, Dad! as my right toe met the handle of an ice cream container full of marked and sorted golf balls.  Right now being November? Better yet the day before Thanksgiving?

Well before he joked about the weight limit on the casket, about God ordering the sod, about a half-dug grave, I knew that bitch called grief would be pulling up a chair and settling in at 1202 today. Feet planted, knees bent, she’d have a front row seat at The Arndts First Thanksgiving with a Dead Father and a Mother Home from the Memory Care Center.

So many moments in which to shine, Arndt kids!

But grief will miss Dad whipping out the Dirt Devil two minutes before everyone arrives so he can vacuum up some spot on the carpet I missed which then causes Mom to declare, I wanna get outta here! 

Grief won’t spy us all raise a glass at the dining room table as Dad’s Hip! Hip! Hooray! annual toast to me tomorrow will be absent.

All those moments together as a family. Oh, how Dad loved them!

And I loved helping curate those before/during/after Thanksgiving moments.

Grief won’t feel my arms hug Dad’s shoulders after dessert.  His left hand, squeezing my elbow twice as I plant a kiss on his cheek and say, I love ya, Dad. 

Grief, she will miss all of those moments.

My new NOW, I guess is the one that follows my Dad’s death. This new NOW takes some getting used to.

I don’t like it. I hate it actually.

But when things are shit, when I am so very sad, like today; I play back the movie in my mind of ever so small moments between Dad and me. These teeny tiny fragments are deposits he left in my heart and on my mind.

And when I want a version of those moments all to myself, I stick in some earbuds and and remind myself that this is my new NOW.

Hi, Jod, Dad. Just a little before 7 on Thursday. Or could be Friday. I don’t even know what day it is. Can you believe it? Oh, here looking at the calendar it’s Thursday. Call me back because I want to talk with you about what to get from Costco for Thanksgiving. Looking forward to having you home, Jod. Ok, love ya. Bye-bye.

 

 

 

 

 

 

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

 

 

 

Robininwindow

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. 

Fuck.

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.

Hi.

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.

Home.

 

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.