Dementia Sucks

Grandma looked at me from my seat across from her hospital bed, rolled her eyes, and pursed her lips in a way that quickly communicated what that look has told me since I was a skipping, doe-eyed kid with colorful, tiny scrunchies holding up my flowy brunette pig tails. It was a look that said, “Well, alrighty then,” or  “Whatever,” but in a way that you knew she meant business deep down, and she definitely still believed she was in the right, but she also made sure her resolve presented itself as, “Why, little old me couldn’t possibly be capable of such sass.” This look was how I knew there was still hope that the Grandma that was mine was still inside her frail bones. This look told me that the Grandma that I knew who believed her grandchildren and Elvis Presley to be her entire world was still kicking up dirt and being her spit-fire self, even if it was now masked under layer after layer of her progressing dementia. 

I knew things were getting darker when it came to Grandma’s quality of life a few years ago now. When my sister and brother-in-law came to visit our family and announce that she was pregnant for the first time, we noticed she was becoming forgetful but it was still comical at the time. We had spent time hugging and squealing about how excited we were to have a new family member on the way, and after that settled down a bit, we wandered into the back yard just to relax and catch up. 

We sat in our circle of chairs, and my sister, whose pregnancy was not treating her nicely, dismissed herself to get sick in the bathroom. Nausea was really normalized for her, so she quickly grew accustomed to quietly slipping from the room to take care of things. A few moments after she left the yard, my grandma turned to us and asked, “Well where did Sydnie go?” When we explained that she was getting sick in the bathroom, Grandma didn’t seem to understand why and grew very concerned. We explained, “Grandma, Sydnie is throwing up because she’s pregnant.” Grandma responded with the quote that we still use to this day, “Well! Nobody told me!” 

It’s moments like that where it doesn’t seem like such a heavy deal. Grandma Bernice is just forgetting things. Aunt Robyn just needs to write down her appointments and reminders more often for her. However, there have also been a lot of moments that never serve as comic relief. Dementia can be scary. Grandma has fallen two separate times attempting to get her mail and broken both of her wrists. The dementia combined with the frustratingly, fierce, stubborn independence creates quite the exhausting concoction for her loved ones. That probably sounds horribly selfish, but trying to find that balance of helping her maintain dignity while also trying to protect her has not been an easy one. My heart goes out to my aunt who has been her live-in primary caregiver for the last couple years. I probably would have crumbled doing that before now. 

Please don’t ever tell Grandma this, but I am the one who took her keys. I snuck into her room while she got ready for bed one night and took them from her purse. Not because I wanted to steal her car, in fact, I was content at the time to hide them somewhere else she wouldn’t find them and leave the car in the driveway. I took her keys that night because she had gotten herself lost again out on the road. She was stranded at a Dollar General, after dark, 20 minutes away from her house across backroads when we found her. She was fine physically, but she had no concept of what she had already done that day, and she couldn’t tell me where she was coming from. Once we got home, she didn’t remember getting lost. I hope that makes it clear why I took the keys. Even though she has moments where she believes I’m the world’s worst granddaughter because I still haven’t, “returned the car I said I was only going to barrow for only 5 days,” I don’t regret my actions. If I could be a reason that prevented her from hurting herself or someone else, nothing would stop me. 

I care for her so deeply. There’s something about Grandma Bernice that will always feel like home to me. Every Christmas always means time at Grandma’s house. She bakes this incredible roasted chicken every year that she insists is only seasoned with salt and pepper, but my taste buds lead me to believe otherwise. It’s got to be a mixture of homegrown species that would embarrass a culinary genius, I’m sure of it.

Her home is in pristine late 60s/early 70s condition. Mid century modern buyers would cry touring that house. Every classic thing you remember from houses in that era is still there. From the yellow, green linoleum and bright orange, matted, shag carpet, to the white stone fireplace and solid, wood roll top desks. The finished basement is complete with knitted and leather pillows along with wood paneled walls. Knick knacks from her many casino high roller gifts, her photos of family, and a ton of Elvis memorabilia cover just about every decorative surface, but not in a way that looks cluttered because my Grandma would never have that! 

Bernice has always been the gorgeous, social butterfly, matriarch of the family. At social gatherings she floats from group to group, with a small laugh and a smile, telling stories of her and my grandpa’s dancing days. She’s a family staple. A strong, independent, prim and proper lady. Her priorities always involve Catholic mass, exercise, salon appointments, and weekly time seated at the Soaring Eagle slot machines. She’s packed full of spunk, humor, and willpower. As her dementia has progressed, those spaces where she has elegantly floated about have become a little more empty. I believe she still has life left in her at almost 92 years old, but only God knows how much, and at this point, I don’t know how much longer she’ll remember my name. 

For now, when I stop in to visit her at the medical care facility, her eyes still light up and she shouts, “Muckala!” the nickname that only she has ever called me, no one else. I don’t know that it means anything by definition, but to me, hearing it in her voice means everything, especially recently.

Sometimes, as I sit and visit with her, she forgets who I am, but she mostly spends our visits packing up the few belongings she has in the room with her, and insists that she is being discharged and leaving soon. In order to leave, we have to distract her with a task, a nurse, or a meal so that we can sneak out the door before she tries to leave with us. If Grandma realized, and maybe she will realize, that we keep leaving her overnight, and that we are exploring long-term care options, she would be livid. And if I didn’t think she’d forget in a few more seconds, or if she didn’t actually hobble around the way she does now, I might actually fear for my life. 

But right now, the care she is receiving is what’s best for her. She’s receiving more visits with people than ever, and she is talking way more than she has in the last while. I’ve seen her laugh and joke more while she’s been in medical care than I did when I would call her on the phone or see her at her house. She’s Bernice, the social light, the elegant, funny, matriarch. She comes with so much sass and poise, but her soul is the most full when she is with people, and right now, she has people tending to her every need. It’s the best thing for her and for all of us. Gosh, I just really love my Grandma.

Call your parents and grandparents if you think about it today. You never know how much longer they’ll be around, and you never know how long you have until you’re the one who has to take the keys. It sucks, but we do really sucky things for the people we love. One phone call or visit won’t hurt you. 

You are truly and deeply loved.