Category Archives: death

Dementia Doesn’t Care About the Super Bowl

The first headline I read this morning was from Huff Post:

“Gen Xers and Millennial’s Got Into Weirdest Fight Over Super Bowl HalfTime Show”

My eyes are full of tears and I have to look away. I glance up at the hospital room TV. The halftime show star is starting, but it’s on mute. Mike and I are helplessly watching two hospital nurses shake you awake to see if you were ok. It takes about 10 minutes. You are so confused when you wake up. I have to leave to room to go cry in the hallway. Again.

We missed the half time show. But we also didn’t miss a thing. 

Happy Valentine’s Day, Dad. XO

Love,

Twinkle Toes

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Twinkle Toes: A Love Story to Dementia Dad.

The Sea Island sun blinds me when I look up to see your face. I stop-salute you and squint to block it from my eyes. You and your mustached-face looks down at me, smiling. You reach down to grab my nose and peek your thumb out of your knuckle sandwich. You hold it up and say, “got your nose!

Give it Back!” I yell, but I’m laughing and I’m chasing your serpentine. Back and forth, in and out of the water. I follow your footsteps and try to match them. I put my foot inside yours and I squish it all around. The waves are awfully loud, but I love them and then you grab me and give me my nose back.

I love any beach or water anywhere forever and ever and it’s because of moments like this. It’s safe, you are relaxed and it just means love. I have to run fast to keep up: one-two-three-four Heathersteps, in and out of the water, equal one big Daddystep. You laugh and stop and wait for me. Then you grab my hand. It’s so windy and the waves are so big and they break the silence in a way that makes me close my eyes and be happy. It smells so good. You are so tall and I look up at you and you laugh out the words, “hurry up, twinkle toes.”

I giggle when you take the shells I give you and you say “Ooooooooh, that’s a good one“.

I feel proud that I picked it and you put it in your pocket. I am twirling round and round with the sand between my toes. When I dizzy-stop, stumble and laugh, you are walking back. You’re done. I stop-salute and squint, watching you get smaller as you walk away. You yell back, “Go to mom now.

***

I’m a bad actor and I can’t fake it anymore. I am screaming inside and crying and keening and wailing. Every tiny cell of me is tired. We are now in Defcon 1. I can’t control you. You can’t figure out reason or make sense of anything. There are not people in the corners trying to hurt you. You are not being poisoned. We are not trying to kill you. I wish I could rescue you from the alien world that you are living in your head. It seems so scary and mean and awful. I’d give anything to Stranger Things you outta there.

I spend hours trying to show you how much I love you. Even when I am not with you, I still worry and wonder if you are ok. I’m so sad that you are leaving me; that you have already kind of left. The other night in the wee hours, you were yelling at me:

You do not care if I die.

You are out to get rid of me.

You are not on my team.

You don’t have my back.

When you say these things, I can handle it. Your words bounce off me onto the floor. I can step on them a little and kick them under the couch. I know you don’t mean it. I know you are sick. I am tough and I can fight them off.

Your face looks so different now. I remember being little and tracing your face with my fingertips. “Oops…got your nose.

I know you can no longer read your books; now it’s only faces. I am sorry that sometimes I don’t look at you when we talk. I try to make my face happy, but sometimes, I just can’t.

Feelings transition to some kind of desperation. I want someone there with me to see what I have to do. I need a wingman. I want someone to hug me. I need help with you. I need you to help me with you. I long for the dad I had, to give me advice about the dad I have now. I feel desert Island lonely.

This journey has given me some useful takeaways and Heather 2022 has a new criteria for friendship.: Choose the right people who deserve to hear your story. I love hearing stories of the people I love and I know they hear me back. There is nothing worse than realizing that someone don’t want all of the sides of you. I have been screaming from the inside of insides. I don’t have the energy to only listen and not be heard. I hope to replenish soon.

I think I am spending so much time writing this to procrastinate making phone calls. Calls to find somewhere we can move you away from the home that you worked so hard for and away from the life you knew. Can I call in a sub for this too? Inhale…exhale…

I took a night off from being with you last night to sleep in a real bed. Today, I head back to you and the couch. When I get in the car, I will cry. I will walk in the door with a smile. I will try not to lose it, but sometimes I do. You threw a box of tissues at me the other night. I karate-chopped it from my face and the box went flying. It was actually super funny. Wish you were there.

Love you,

Twinkle Toes

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Tack Your Map.

Yesterday, I woke up to a text whistle.

My eyes were still trying to focus, failing miserably to recall the details of the very weird dream I just had about going back to college…I was doing the groggy, obligatory reach-over for my glasses and my phone.

A very upset dear friend sent me a text. “…Did you hear about Sammy?…”

No. No no no no no no no. Not Sam. Samsamsamsamsamsam.

What is that thing? What is that thing our minds do at times like this when memories, clips, moments, feelings…they all attack our brains and our heads and our faces…flying at you like a colorful tornado…recollections of the past floating around. You close your eyes and you try to grab ahold of one to steady it for second, and it moves and then you open your eyes. Poof. There they go. You try really hard and they come back again and you struggle to remember them in a not-fuzzy way. For me: a laugh, a look, a rehearsal, a tipsy walk down the street, a striped shirt, a giggle-filled stage kiss, a hi and a hug, a deep talk in a dark bar…reminiscences all chaotic, all fighting, bumping into each other, these memories belligerent and clawing to be seen and competing to be remembered in my mind, just as they were in that memory Polaroid…those memory Polaroids…snapshots of those times, that small moment of many; many and not enough tiny moments that make up the time when I had Sam in my life.

He was just a friend. Not a past lover. Not someone I even truly knew anymore. But my heart aches just the same. Crying for his family, bawling for his loved ones. Then my inner dialogue goes Tasmanian Devil…we do this to ourselves….I’m yelling at me in my car yesterday morning, fists gripping my steering wheel, “Why in the hell didn’t I talk to him anymore?!”

Stop, breathe. Hug ourselves. It’s in this moment that we need to tell us that we are ok because life. simply. moves. It just keeps moving. That time I had with him was there and then life moves so fast…onto the next show, the new circle of pals, the new job, the new husband, the kids, the more kids, the more jobs, the more life. The journey takes us; the road winds and we drive farther on The Map of Life. But it is on that Map that you mark those special tack pins. You take them and stick them in all the locations that you really lived and loved, because you want to remember that time and that spot and those people. They meant so much to you that you saved them for later. You do that, so when you go back to The Map and look at all the beautiful places you have been, you remember what a great journey we are on so far…And Sam, my friends, was definitely a tack.

I love Facebook. I fucking hate Facebook. But most importantly, I NEED Facebook. Not just to promote my music career, but I need Facebook so I can look back on all my connected tacks. I go on my feed page so I can laugh at a ridiculous cow meme that was posted by an old theater professor, or admire a neighbor’s summer garden or feel happy for the old middle school friend who found great love, or I can even just send a virtual hug to a long-distant cousin who just needs a freaking hug. It’s not the same. It’s not in person, it’s virtual, but it’s the best I can do right now and I MEAN it. It’s me saying to everyone, “I am busy on my path, but I am still so glad that you were on one of mine.”

Sam was just this stunning human. Strikingly good-looking, yes, but that wasn’t even the best part. First and foremost, he was a deep and true listener for all. When you spoke to Sam, he concentrated on your words with his warm puddly eyes and his beautifully enormous heart. All of this greatness was surrounded by a unique and rare talent for performing. I have a funny Polaroid in my head that reminds me I had a little crush on Sam. I was playing Chris Hargensen and he was my Billy in a hilarious Chicago musical called “sCarrie the Musical”. We were the mean kids and made out a lot. Which wasn’t horrible. We had this rather rated-R musical number where I had to sing to him while I was performing….well…let’s just say, that the entire cast could barely get through it every time because we were all laughing so hard. Best of times.

I don’t know how we lost Sam. What I pray for is that he didn’t feel one ounce of pain. What I wish for is that his legacy will live on for all days, by the people who loved him. What I know is that all of it is a complete tragedy.

Pray for his family. Hug everyone you can. Love everyone you love. Go hang your Map.

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