Tag Archives: memory

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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I Lose Everything. The End.

Day 3:

My husband gets me.

I try to think when my loseeverything-itis started to get really bad. I think it was after I began having babies. Maybe not, but I usually blame everything else on that. Even as a kid, I was always flighty. I was perpetually ditzy, often confused, very emotional, constantly disorganized. However, I was kind of adorable and that helped me get away with a lot. This very annoying problem I have has definitely gotten worse over the years. Also, I am also not so adorable anymore, so it’s harder to get away with it.

My incredible friends get the brunt of it. I am constantly leaving my shit everywhere. Boat days are the worst. Shelly has my flip flops, Hank has my towel, Evelyn has my sunglasses and we are all still looking for my phone. I think for awhile it was funny, but now it’s just annoying, sprinkled with a hint of sadness. This one time, I left my iPad on the top of my car. You heard me right. I was in between two back-to-back gigs and it was a very stressful day. I had to run home to get something (probably something I forgot) and I totally also forgot about the iPad. It fell off my hood and someone ran it over with their car.

My iPad is my life blood when it comes to my singing jobs. I was devastated, disappointed, ashamed. A week later, for Christmas, those same incredible friends all chipped in and bought me a new one, so I could keep on playing music. Yep. Incredible. My heart still overflows, because they love me so much, despite…me.

So it was cute my husband bought me the key ring. The truth is that I just recently lost my keys and it had all of our new car FOB’s on it. I think I threw them away by accident. I guess you can say this gift is more for him, than me. He can finally take a break from digging in the garbage.

It’s not the first time someone I love has bought me a lost and found tool. A dear friend of mine gave me a purse a couple of years ago and three Apple tiles. We hid the first one inside the very cute purse. We put one my wallet. Super helpful. Then we put one my keys. That was blissful and happy time in my life. I knew where my shit was. Eventually they lost their charge and chaos ensued. And here we are again.

I can kind of guess what you’re thinking. “Pull yourself together, Heather. Put everything away in your purse and put it in a safe and remember-able place everyday.” Now YOU’RE adorable, but nay, nay. Too easy.

Picture, if you will, a big tornado of chaos. That’s me. I am always in a hurry, always late for something, always in a perpetual frenzy of mayhem, bewilderment and perplexity. In short: it is very, very difficult to be me.

Recently, I bought a key hook to put right in the doorway when you walk in the house. Brilliant, the family said! Well thought out, the family said! You actually have to put your keys on it, the family said! They use it. It comes in really handy when you have four drivers and we play car Tetris every day. The only problem is just that I keep forgetting to put my keys on it. DAMMIT.

I feel like there is money to be made on my imperfections. I smell invention. I’ll see your tiles, Apple, and I will one up you with little chip stickers. Cheaper, more compact and you can stick them on anything. For instance, I really also lose my lip gloss about for times a day. It’s incredibly frustrating because I love a good moist lip. What I need is an affordable little itty bitty sticker on there, with a microchip, that I can program in my phone and when I can’t find it…push the button…beep beep beep….lip gloss found under my car seat. Lip crisis averted.

I could put one on the portable fan in my room because my freaking kids keep taking it. It’s really not that HARD to find it when it’s missing, because I just have to burst in yelling to one of their rooms. But If I had an annoying little alarm, I could really drive it home with them to stop taking my stuff. I could just incessantly beep it in their rooms until they can’t stand it anymore and they bring it back. I absolutely need one for my hair straightener. Number three is a double dog down thief. She’s definitely at her absolute worst when she steals my very posh shampoo and conditioner, brings it in her shower, leaves it there and I don’t discover it until I am naked, wet and super pissed off. Definitely need a little sticker for that. *Add waterproof to business plan.

Those are instances of criminal thievery by my children. But I also need help with things that I lose like…documents. Medication. Numerous articles of clothing. Clothing tags….I can sew them in like camp. Yes! *Add name tags to business plan.

While I am at it, “it” being creating new things to help me get through my day, I should also look into memory care. Things that help preserve the brain I still have left and try to stop it from rotting, or whatever it’s doing up there. Maybe I will start doing Sudoku with a clicky pencil. I can suddenly take up gardening and consume fish oil. In the end, I think I just need to slow my roll. Continue my quest to heal my sick body, gets some damn sleep and stop sweating the small stuff.

“People give the worst advice about lost things. Retrace your steps. Pray to Saint Anthony. Think about where you last saw it. But that doesn’t apply to the things that matter. Those are right in front of you, except they can’t be found by looking for them. Only by looking at everything else.”
― Kristen Lepionka, The Last Place You Look

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