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.

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, 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.

AARP, alz, alzheimer's, amyldosis, caring for parents, dementia, family, grief, memoir, mom, Uncategorized

Don’t come for me unless I send for you

Minefields of red, rough patches traverse Mom’s forehead. Planted by the mixture of forced heat from the family room vent and the winter air, they  are a hazard Rosie remedies daily. She shoves her four fingers into her mouth and gives them a good, solid licking.

I am struck  at how this movement is so similar to how she’d help us put on our winter mittens as kids. The crisscrossed, colored yarn hanging from each sleeve became small circles she’d shove our 4 fingers in. Then, quickly, she’d usher us out to make a snow fort so she could get some peace. Today, I’m guessing her 4-fingered approach provides her with less comfort than an empty house did years ago. So, I intervene attempting a more conventional approach.

Mom, you want some lotion for your face? See that bottle right next to you?

She looks at me like I’m nuts.

In the quietest, most constant voice I can muster–I see you rubbing your face. It must hurt, Mom. I do the same circling motion on my face I’ve seen her do. See, mine is dry too, but this lotion helps.  I model for her, putting a small amount of Lubriderm in my hand and up to my face.

Noooo, I already did that. She deadpans me. I don’t need to do it again. No, you’re not going to tell me what to do. I don’t want to do that.

Silence.

I turn away from her. Exasperated, I talk to the couch cushions that face me.

Well, then continue to basically lick your face, Mom. Pretty much feels like leather I am guessing.

Or shit–your face must feel like SHIT. I say that to myself in my head.  Fuck.

I am tired. Attempting to not get held captive by grief.

Crying in the car or shower is my typical mode of operation when my eyeballs cooperate. For a crier, I am not a slobbering mess. At all.  Instead, I have a refrain from Sia that I secretly belt out in my head:

I’ve got thick skin and an elastic heart

I’m like a rubber band until you pull too hard

 

To be a rubber band, it’s about the business of doing: wrestling compression socks onto Dad’s crusted, old-man feet, weigning him as his doctor instruced, handing the pills, the water, the glasses, doing the cooking. Helping Mom brush her teeth, crushing her pills, cajoling her back into the house. Just trying to get shit done.

I just do the doing.

I don’t have time for being.

Being sad. Being afraid. Being lonely.

Being anybody, but Joe and Rosie’s daughter. God, I never even realized this until I am typing these words.

With all this doing, my heart has been taking some tugging. Unlike the video with Shia and Sia, our cage isn’t some merry-go-round of failed relationships. It’s the damn Am-y-loid that’s holding us hostage over @ 1202 S. Patton.  Now, I’m no doctor, but isn’t it somewhat sad, almost twisted that BLOOP! This protein has penetrated Rosie’s brain and Joe’s heart?  As one of my sister’s said the other night, “We said goodbye to Mom long ago, but now dad’s sick? It’s too much.”

So, yea we gotta a bunch of elastic heart’s over here.

Thing is– Just. Not. Dad’s.

At some point or another each one of us kids has told our father about his heart.

Dad, stop getting so upset over stupid stuff or you’re going to have a heart attack. If that happens, we are REALLY screwed.

Oh, how the universe heard us.

I’m fucking useless.  Useless, I tell you. You’ve got two invalids in this house, Jodi. Two goddamn invalids.  

To which I politely respond, Dad, will you please stop saying that? All this negative self-talk. Jesus, if anyone wonders where I get it from.

This gloom and grief is bullshit. This watching our father catch his breath as if he’s just rounded the 18th hole is well, fucking maddening. Rosie with her decaying mind and Joe in a body that won’t cooperate; some days the heart is tugged too tightly.

But that grief, she better not come for me.

While doing the doing, I was sorting through mail and bills the other day and found two cards addressed to me.

sympathy card

At first, I read the words, without really reading. I just didn’t have time to be sad. To be missing my work family. To be grateful for thoughtful colleagues and friends.

But then, damnit. She came for me. That bitch, grief.

I sat there in the kitchen crying silently. My head down, cursing myself for being sad. For being lonely. For feeling inadequate. Like I can’t do enough. Like I can’t be enough. For them.

Fuck, what am I doing?

Then, I look up as Mom is rounding the bend into the kitchen.

She stops. And in the crispest Rosie voice she hands me my heart back.

I just want to say I’m glad you’re here because you’re one of my most favorite friends.

I smile.

 

I’ve got thick skin and an elastic heart

I’m like a rubber band until you pull too hard