Dementia Sucks

If you know, you know. If you don’t know, I hope you never do.

It’s ugly, it’s defeating, it’s heartbreaking, and it’s the hands-down hardest experience I’ve ever had to go through. I was a full-time caretaker for my yia yia for the last two years of her life. I say “full-time” because 1. I was unemployed for a solid chunk of that time (10 months to be exact, so yeah, literally full-time), and 2. to this day, my friend reminds me that even though I can’t write it on my resume, it was one of the most important jobs I’ll ever have and left the biggest impact on who I am.

See, I never knew my other grandparents. Both of my grandfathers died before I was born, and my boo boo died when I was four. My yia yia was my everything. She was my third parent, my babysitter, my Saturday night, Snick-watching sleepover buddy. She imprinted me with etiquette and manners. She brought my Greek heritage to life. I mean seriously, in addition to all things Greek, her kisses took it to a whole new level. She once kissed every kid in my 5th grade talent show and was dubbed “The Kissing Lady” both at school and at church. And no, this never embarrassed me, and yes, people were totally cool about it.

As time went on and I grew up, things changed and life happened. We suffered a huge loss to our family when I was 21 and yia yia wasn’t the same after that. Her light dimmed. She was still yia yia, but we were losing her, slowly but surely. I graduated college and then eventually left to teach and travel in Thailand. I was 23 when I got back and reality was calling.

Between my mom and I, yia yia was our primary focus and we shared the responsibility so one of us was always with her. And remember, she was 100% Greek (she came to America when she was 21 for college), so we wanted with her with us. It was never even a question. At home, with us, in her room is where she would be, end of story. We'd eventually get hospice help, but even then we'd stay in the room with the nurses because one banged her head really hard and didn't care, so we couldn't trust them alone with her.

Her condition got progressively worse and worse: she’d refuse to eat or drink, she would solely speak in Greek (thank God my mom is fluent), she’d forget who my mom was, she’d get dizzy, she’d hallucinate, she’d call out names of the deceased in the middle of the night, she’d lose so much weight and become so weak that that led to my learning on how to change a diaper. My very first exposure to diapers; not on my own baby, but my grandmother. (I know what you’re thinking...Has this girl seriously never babysat? And the answer is no. No I have not. I worked at a kid’s swim school for my first job in high school and I'm the youngest in my family and never even held a baby IRL until I was 26, okay?!)

Brain deterioration is no joke, and I was heartbroken this was happening to her, especially of all people. She became someone I didn’t recognize. I wouldn’t wish that kind of pain on anyone.

But here’s the thing. I know I mentioned that watching her slowly die broke me, and it did, but it also built me. It gave me a whole new outlook on life and death. It made me understand what true, unconditional love was. Even when I was begging her to drink water (one with ice, one without ice, one room temperature, one cold, one with lemon, one slightly flavored, one orange juice, one cranberry juice, one apple juice, one pink something that was either lemonade or more flavored water but I don’t know just please try it and like it and drink it), she’d finally take the smallest sip she didn’t want just for me and then tell me she loved me. There it was. That was it.

“I love you too, yia yia,” I’d reply with tears in my eyes.

That’s what love is. Sticking it out when it gets really, really freaking hard. When you're helpless and hopeless. Putting someone else’s needs before yours, even when you're defeated and exhausted and frustrated. Doing things for them that will make you break just so they can feel the smallest bit of comfort. Sitting with her when she’s dizzy. Playing Ricky Martin at 9pm to settle her down and ease her into sleep because hey, of all her CDs, it worked the best.

I wouldn’t want to trade all those times I could tell her I love her while she was still here for anything. And I can still hear her voice when she would tell me she loved me and that I was her therapy. She’d have those glimmers of with-it-ness. Those little windows where I could see she was still in there in a time of such sadness were everything. Seriously, everything.

Sometimes love can run you dry and make you numb. You might lose yourself (or your cool) along the way. You'll feel guilty about being selfish for one hour to take a break and go to a yoga class, crying during savasana when the instructor tells you to thank yourself for showing up that night. It can stress you out, and sure, you might spend some nights face-first in a soaked pillow, but love gives you room to grow. All the challenges and hardships it throws at you are there because that’s what love does. It exists to challenge you. To push you to new heights. To make you see and understand parts of yourself you never knew existed, be them good or bad, ready or not. It’s not always going to be comfortable and safe, but because of its grittiness, we become better people.

Dementia still sucks. But the lessons it taught me sure don’t.

- Diana

Diana JoinerComment