alzheimer's, courage, dad, daughter caregivers, death, death and dying, dementia, family, fear, grief, loss, meditation, memoir, mom, truth, Uncategorized

What doesn’t kill you makes you stronger

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“You mentioned that you meditate. I am sure it makes you feel good. It calms you, right?”

“I mean, not really, that’s not why I meditate,” I say like a kid who bubbles in the wrong circle on a Scantron assessment, but is determined to make that circle more black than gray. The answer sheet sagging with the weight of lead, a divet in place of a blank bubble.  Shadows of gray that reach far beyond that bubble on the form.

No, actually Mr.-I-Make-Assumptions-Without-Seeking-To-Understand-FIRST.

You’re wrong.

But no worries, keep going. You clearly have A LOT of experience at this so, don’t let my crossed arms, crossed ankles, or blank stare stop you. Even though my insides are screaming- my body, my mouth—to NOT accept his words as mine. Go on. Break me in half like you’re gonna do.

“People do meditation for two reasons. That’s why you meditate, to calm yourself, to feel better?” he went on.

I let that question, which was more of a statement with heaping amounts to judgment gooooo because he apparently already had an imaginary pencil in his hand, a Scantron sheet and the correct answer. Shaking my head on the inside, he was committing a sin familiar to a first-year teacher: leading the student into THE expected answer.

He, the transmitter of knowledge and arbitrator of truth.

I raised my hand, being the one who decided to “go first” in our group of twelve. I sat at the end of the half circle facing him. Sitting on a bullshit black, plastic chair and realizing no one was going to jump in and save me from the Q&A fun.  He continued and I dug in, resigned to the upcoming hyperventilating cry familiar to anyone who has ever felt so fucking misunderstood and frustrated.

“Only it doesn’t work. You meditate to:

  1. Calm yourself
  2. To feel better about your problems

BUT.. It’s a band-aid, really. Your problem is still there. The box you created of your problem, the problem in this box.”

He makes a box in the air.

“It’s still there because you haven’t changed and your perception of the problem hasn’t changed. Same context, same problem. Same YOU. Just a calmer version of yourself. Meditation makes you feel good for a time, but the problem is still the problem. It’s still going to be there. It doesn’t work.”

He said.

The night before I asked, “So, this box that you speak of, aren’t you really talking about one’s perception? My perception of my problem is the problem. The actions I take are a result of the perception I have of my problem. What I think it is, maybe THE PROBLEM isn’t IT after all. It’s what I perceive it to be and my actions are a result of the flawed way I think of my problem.”

To which, the gentleman disagreed, explained it as “context,” but then proceeded to use “context” and “perception” interchangeably again and again. He had an answer in his head and there was no deviating from that answer. He explained that, because we are all intelligent beings, we can explain our problems very well. We are very good at talking about our problems and analyzing them, but those problems persist.

If you are a woman and you are reading this, I am sure you recognize the feeling that was in my shoulders, neck, face—and really fucking present in my teeth and jaw, his words a round peg into my square jaw. The feeling you get when someone, usually a man or person in power, is trying to get you to adopt a certain way of thinking. Call me sexist, I don’t give a shit. It reminded me of all those men I worked for who would ask me for my opinion, typically around a conference table, give me the obligatory moment to explain, but that didn’t really matter because they made up their mind about me or my opinion long before the stopwatch in their mind began and I stopped talking.

Those assholes.

And I say that with love.

Ya’ll ever go to what you thought was supposed to be hard, but inspiring self-work? Therapy, maybe? Where you expected UUGGGLLLLYYYYY-ugly crying, ugly truths, ugly Q&A?

You expect ugly because growth is MESSY. Complicated. It doesn’t have to be soul-crushing, though. I don’t have to make MY point at the expense of  YOU. If I do, I am an asshole. And, I KNOW—as a coach and as Jodi being Jodi—I’ve been THE ASSHOLE.

Takes one to know one.

But that way of operating is never ok.

Back to the perils and my super confused outlook on meditation…

“I disagree with you, “ I told him. “I don’t meditate to calm myself. I meditate to know myself,” my voice too loud to be reasonable. Like saying it louder would make him hear me.

“Ok, if you say that is true, then I believe you.”

Like I’d be lying.

“You can know yourself, and you’ll feel happy for a time, but the problem will still be there.”

Wait. What? You are shit talking meditation? At a retreat that has yoga 5 times this weekend? Huh…Makes total sense to me.

You know what, maybe I should have offered some disclaimers before I started to conquer his assumptions about me and my meditation practice. Maybe if I told him that I really started meditating because my Mom has Alzheimer’s and research shows that it helps improve the neuroplasticity in the brain. Or that I started meditating last winter because I was in such a deep depression I considered running my car into a brick wall one gray Chicago day. I was that depressed. Would that make my meditation practice more acceptable to him?

FUCK.

My intuition started screaming at me the night before when he bad mouthed the concept of HOPE. On and on he went describing HOPE like she was a  lunatic, misguided sham of a woman, who’d been delusional, irrational, and a big, fat fucking liar who had screwed him over and was now trying to get us to unfollow her on all forms of social media.

Essentially, HOPE is a nice idea when you think about her, but don’t be a fool, she will do you wrong each and every time.

When I found out about this opportunity, I was a little hesitant because there was very little information about the weekend. While I knew there would be yoga I’d dread, there was no schedule or agenda of our time to be found. Sure, I could’ve asked, I should’ve asked. That was stupid, on my part.  I know better. How many trainings have I developed where I attempt to be super thoughtful about the agenda, our use of time, and how to communicate the rationale for each and every decision? It’s time-consuming for a reason. But, I didn’t listen to my little voice months ago. I rationalized the voice was my nemesis FEAR showing up and I put my ear muffs on to the noise. If I’d known I would be expected to participate in 10.5 hours on Saturday and Sunday, plus 4 hours on Friday and do yoga 5 times, I’d likely never paid the money. Truth.

But when I got our Essential Question in an email prior to class, I thought ok, I like it. Seems like a prompt I can work with. Seem like necessary work:

What is the central and biggest problem in your life? It is something you have been struggling with for as long as you can remember, and even if it has changed form, it remains essentially the same. Write the problem down and bring it with you to class.

I thought A LOT about my problem. How do I pick one? I got a list, y’all! But when it boils down to it, my “problems” stem from one overarching issue that flows from and into all others. I NOT am enough. I am too flawed. Too inadequate.

As much as I preach it to the choir, I don’t love myself. That’s probably why I talk about it so much because it is something I am currently working through.

When I began to explain my problem as I saw it, I explained that I didn’t feel adequate, that I focused so much on all the things that were “wrong” with me, the mistakes I’ve made and general feelings of inadequacy, that love and self-acceptance were the root of my problem. In talking, I came to the conclusion, that in all aspects of my life I may not love myself totally and fully because I have this idea that I am not adequate. I admitted to not practicing what I preach, which is to love oneself.

This revelation wasn’t new, but it took on a different life when I had to say it out loud. However, my perception of the problem was not met with applause or confirmation.

“So, what you are saying is that you are not lovable. That is what you are really saying.” 

He said.

I thought for a moment. I thought of all the examples in my mind of loving relationships I have with people.

“No, I don’t think I am saying that. I think that I can give love freely. I give love. I am able to give love. I don’t think I am a great receiver of the love I give to other people.  It’s harder for me to receive it. And I think I can’t receive it because I am not adequate as I am. That’s what I am saying. Like I am not worthy.”

“Exactly. You are unlovable. No one can love you because you are unlovable. We are saying the same thing. You just aren’t accepting the words I am saying to describe your sentiments.”

My shoulders began to move in unison with my belly expanding, crying like a well-orchestrated chorus. I can feel everyone watching me. The woman next to me is crying now too and I wonder if she is crying for herself or for me.

“See. There. What are all those tears about? What is happening in your body right now?”

What I wanted to say is: WTF?! With your unlovable bullshit.

Instead, I said, “I feel like you are putting words in my mouth and trying to convince me of something that isn’t true for me. I am angry really,” resigned because his mind is made up about me and my problem.

“You are just uncomfortable with the words I am using. We can use your words. Fine. You are inadequate. Let’s use that word if that makes you digest it easier. All your life you have worked to prove how adequate or inadequate you are. You do x, y, z and it shows just how inadequate you are. If you do a,b,c you are showing how adequate you are. You say this is about adequacy. I say love. I mean look at your shirt,” he said mockingly pointing to the Love First command that ran across the chest of my t-shirt; a purchase I made before I left on my trip. I thought it was a fun, appropriate way to cheer myself on once I got the “Essential Question” for the weekend.

“The Shirt?” I laugh looking down at my chest. Yea, I bought this shirt for me, which is funny because I can’t actually see it to take advantage of the message, but…”

He didn’t find the humor in that acknowledgment.

“You’re getting off track. Why the shirt?”

People who are not criers, often hold the mistaken belief that crying is some exercise in fragility. What it can be for many women—-because I am one and I have talked to women who have had similar experiences—is a needed release when we are BEYOND frustrated by not being heard and can’t run resort to a punch in the face.

“I AM answering the question. Give me a minute. The world is a really fucked up place, so it is a reminder for people to be good to one another. To love one another,” my voice probably again too loud to be reasonable.

“Ok, now you are talking in political and theoretical terms, we won’t get into that,” he cuts me off.

“What? No, I am not. I am answering the question. The question you asked. I am answering it,” I say like I am 12. I am ready to rip up my Scantron sheet because all my answers are wrong. Yep, I am inadequate. 

“Let’s move on. Ok, close your eyes and take me back to a moment, as far back as you can go when you felt inadequate.”

And so, the next fifteen minutes consisted of me remembering times in my life when I was inadequate, using my words; unlovable using his.

I’ll spare you the examples.

I ended up giving in and agreeing, that yes, given my examples, I must be unlovable because I wanted it to be OVER, which is funny because my biggest dread-the yoga-wasn’t nearly as bad as interacting with the gentleman standing before me.

I gave in. I gave up. And in my head, I remember thinking— I am letting you win, you motherfucker. 

Earlier that morning I mentioned that I have always carried a profound, perpetual sadness with me.  And, I’ve often wondered if it was because my Mom carried so much grief and anxiety in her womb while carrying me. With all the baby deaths before me, the bedrest and news that she wouldn’t conceive me, I could understand if she turned her sadness and anxiety inward, having always been the strong one. I shared that Mom was told I wasn’t supposed to live because I was just a mere 3 lbs. 4 oz when I was born. The size of a pot roast. 

“I am going to bring you back to what you said about your Mom and having you this morning. You said you weren’t supposed to live, that you didn’t deserve to live. Do you remember saying that?”

With extra effort and emphasis on the –, you didn’t deserve to live– eleven pairs of eyes stared at me like a gaper’s delay on the Kennedy.

“I NEVER said that. I NEVER said I felt that I didn’t deserve to live.”

And at that moment, this arrogant man gave me the greatest gift. He reminded me of who the fuck I am. Yep, self-love is work. And no one person, with all the shit behind their name or their experience, can know you or understand you. If YOU are not for YOU, who will be?

“I am sorry,” he said. “I didn’t mean to put words in your mouth.”

It couldn’t be taken back. He had said it. Maybe in all his careless assumptions of me, he imagined a statement I never made about a belief I never had. 

I didn’t go back the next day. I took a ferry to Bellagio and thanked the man in my head for yet another lesson in learning to love myself. Even when loving yourself means walking away from something that doesn’t serve you.

Lessons come until they are learned. 

 

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

Gone

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.

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, 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, 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