Tag Archives: dementia

The Longest Year

6/2/22

In the longest almost year of my life…dad’s health issues have taken over his Lewybodys Dementia and he’s in his last days. When LBD hit rapidly last July, after a septic UTI and hospital stay, our world was forever changed. Massive significant health problems, including surgeries and an amputation, made his confusion from LBD and his confusion of what was medically happening to him absolutely devastating to witness. Now I sit by him at his facility and he sleeps most of the time. He stopped eating a couple of days ago and it’s even hard to get him to take a few sips of water. I’m a writer, novice, but it’s my love language. I’ve barely been able to even write the utter emotional and physical despair this has inflicted on me and my family. Most importantly, on Dad. How is it possible that in less than a year, I am losing my big, strong, successful, insanely intelligent, funny, loving father? What we are all going through, this is the hardest stuff of life. I’m clinging to him in the last moments of his; praying for his calm and his peace, until he finally can be with our loved ones in Heaven. Hugs to everyone who has had to go through this. You don’t know until you know.

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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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Awe Is Not Always Happy

Round two: (better late than never.)

How is he talking to me and he looks like himself and his hands move like himself and I’ve sat in this chair across from him a million times while he sat in that chair across from me a million times? Now all his words in their order make no sense like cut up, strung up and mismatched pieces of fabric. I’m trying to smile on the outside and I’m praying he can’t tell that I’m screaming and crying on the inside.

I’m in awe, and it’s not in the fireworks way, or being at Disney way, or a nurse handing one of my babies in my arms for the first time sort of way. That’s all awe filled with joy.

Tonight he couldn’t tell me very importantly what he very importantly wanted to tell me. That’s awe filled with sad.

Falling asleep, broken heart. Scrunch tears and think of years ago, walking on a beach where he pulled me out of the water, laughed loud, called me “twinkle toes”, skipped a rock and bent down to hold my hand.

That’s happy awe.

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