Dementia and Caregiving…My New Normal

When Gracie Comes A Knockin' I'm not a great patient. I'm really not. So when my Hubs nervously says to me, "I think you have a brain tumor," I laugh. Hysterically busting a gut in his gorgeous, blue-eyed face. "A what?!" I shockingly remarked as I lay in bed for the 3rd week straight from what I thought was an ongoing "pressure" headache. A very long "pressure" headache that happened to a woman who rarely ever had so much as a "regular" headache in her entire life. I thought my Hubs was talking gibberish. Brain tumor. Hilarious. How could a healthy 39-year-old woman such as myself have a brain tumor? Preposterous, I say! Do you have a brain tumor, sir? Looking back, however, I can kind of understand where he was coming from. Ever since Christmas (which I didn't attend because of this "pressure" headache), I wasn't myself. For the next week or two I was self/or friend diagnosed with either vertigo, sinus congestion, and some other oddities I won't even mention. I thought I could "tough" my way through it; I'll get better. This is ridiculous, I thought, to still be suffering from some crazy-ass head thing. It wasn't until I was going into week 3 that I got concerned: I wasn't better; I was fucking worse. Like way worse. So much more worse. I couldn't sleep at night and I recall telling my Hubs, "My head hurts so bad I think I'd feel better if I blew my brains out." That's how in pain I was. The pain got so gnarly I notified my Hubs that we have to go to an Urgent Care pronto. I could barely sleep, all the OTC medicine I was taking wasn't working anymore, the holistic concoctions and potions weren't even touching my pain and any light felt like my eyeballs were being stabbed by tiny daggers. As I lay on the Urgent Care table, with my eyes closed due to the piercing brightness, I spewed my symptoms to the nurse and doctor. Eventually, the doctor told me my labs showed I had a UTI. "A UTI!" I screamed in my head. You've got to be kidding me. I know my body and this isn't a UTI. Apparently, I wore that same expression on my face because she quickly responded. Doc said I'd be shocked at what a UTI can do to the body. I laughed her off and wanted to believe her, but knew something deeper was going on and a UTI wasn't the answer. We were sent home with a sympathetic look, a prescription for antibiotics, and a "check-up with your doctor, sweetie" send-off. The days that followed only got more painful; more dreadful. Four days later—by Thursday afternoon—I began puking. And that is the last thing I recall. Let's name this the fade-to-black scene, mmmmkkkay? The puking scared me, but it also scared the shit out of my Hubs. He had been wanting me to go to the hospital and I stubbornly refused (like I said I'm not a great patient)...over and over and over again. I was incoherent and unable to make any decisions at that time. The Hubs tried his best to get me hydrated and ready to take me to the ER. At that point, I was no longer able to tell him, "no". When he called our neighbor to help him heave-hoe me in the car for the ER (I was like a sack of 120-pound potatoes), I began having a seizure. Our neighbor was there at that moment and told Hubs this just turned into a 911 emergency as he called for help. The paramedics arrived; I was assessed, stabilized, and then taken to the ER via ambulance. At the local hospital, they found a brain anomaly. I was then sent via flight-for-life to another hospital and underwent a 5-and-1/2-hour brain surgery to remove all of (what we came to know) a 6-centimeter (think egg-size) Grade IV Glioblastoma brain cancer tumor (whom I affectionately call "Gracie"). Yep, when I do things, I do them big. That whoppin' glioblastoma was in my left frontal lobe and had amassed such a large field in my brain that when it shifted to the midline of my brain (or something along those lines), that's when I had a seizure (and also when a part of my right peripheral visual field was cut off). The tumor was a honker and clearly explained everything I had been experiencing physically—up to that moment. Turns out, this almost 39-year-old "healthy" chick, indeed, had a brain tumor. The Hubs was absolutely right, damn it. Medical Turban *Photo heads up! There are two pictures coming up that show my incision from my surgery. If that doesn't float well with you—please skip this part.* If my last memory was puking, when did I wake up from my own abyss? 27+ hours later to be exact. At that moment, I felt my eyeballs squinting as I noticed I was in an ICU bed and feeling what I like to call a "medical turban" wrapped around my gourd as medical professionals walk by in shock that I'm awake. My head feels like a soft pillow. Is this some kind of weird heaven, I ponder? God sure is hilarious if he has a hospital up in the sky. Turns out, it was Earth. And my head felt so much better. Hence the medical turban.

Grief⏤The Ultimate Permission Giver I thought I was losing my mind after my Pop’s died . No joke. I began to think the dementia that finally ravaged his brain, was about to do the same to mine. I couldn’t think straight, literally. My short-term memory was shot. Which sent me down the Google rabbit hole where I found helpful articles that explain how grief is not just processed emotionally and spiritually; it’s processed physically as well . Lightbulb moment; that makes total fucking sense, I thought! I didn’t question my sanity after that. Instead, I got really intentional about taking care of myself and my grief. Post-Physical Grief Revelation What unfolded after that has been interesting because grief became the ultimate permission-giver to say “no”. Because grief left me feeling depleted of almost everything⏤mentally, emotionally, spiritually and physically⏤I gave zero f*cks in life. With not much left in my tank⏤if you’re not my husband, daughter, or client⏤I rarely have anything left over to give. Protecting my energy has become a full-time job. It’s made me say “no” to just about everything outside of my family, house and work. It’s made me say “yes” to everything that helps my world feel, well, soft and not so dreary. And, damn, it feels so good. Which makes me question... Why did grief have to give me the permission to say “no” to whatever I wanted to say “no” to? Why couldn’t I have those boundaries without having to lose my favorite person in the whole world? Grief⏤The Ultimate Permission Giver So, what does that actually look like? You know, saying “no” when you want to and saying “yes” when you want to. Being all congruent and aligned in life. If it’s hard for you to place boundaries or say “no” when all you do is say “yes”⏤here are some examples of how I laid the grief/boundary smackdown. Listen to your body. Bloody hell, if you’re tired, be tired. Your grief body needs all the help it can get. Reschedule, cancel, leave the party, get in bed while the sun’s still up to tend to your tired. I went to Scottsdale, AZ for a business trip and stayed in this magnificent, swanky-ass resort. After the conference, I passed out at 6:30pm and never really took in the beautiful place we were in. That’s more than okay. I woke up refreshed and my body and brain were happy I did just that. Be brutally honest with yourself and others. Now that I know tending to my grief-self is #1 priority for me, I have very uncomfortable conversations with family, friends and even strangers. I decline gatherings and invitations constantly (including holidays, birthdays and celebrations), or give the caveat I may not stay too long and tell people up front: In my grief process, currently, I get overwhelmed super easily, so if I do come to your shindig, don’t be surprised if I leave early. I’ve ordered the wrong milk in a café and told the barista, “Sorry, my dad died recently and I’m completely out of it.” When my family or close friends ask how I’m doing, my usual response is, “I’m here. You know, just feeling like my left arm is cut off and I don’t know where it is.” The pre-grief Keli was a jovial little bitch and her remarks would have been, “Great!! How are you?” Grief and death are subjects people can get squirrely with. My honest response is to honor my journey…whether that makes you comfortable or not. And of course, I think these topics should be discussed more in life because they can be lonely and isolating if you don’t talk about them. I fumble constantly but give myself GRACE. Here’s where I fumble⏤when I think I can say “yes” to something (in the moment) but when the time comes, I actually don’t have it in me to do the thing I said “yes” to. I’ve had to say “no” at the last minute to my very best friend more times in the last couple of months than I ever have in our lifelong friendship. I forget to tell people the stipulation: “This sounds like a 'yes' to me right now, but let’s revisit this when the time gets closer.” In December alone⏤the month of my Pop’s and Hub’s birthday, along with the holidays⏤we ate out constantly. Not something we do consistently, but I gave myself grace to not cook and get through this hectic month as sane as possible. So, perhaps, if you blow at boundaries, or want to get more aligned with how you show up in the world and where you place your energy⏤ don’t wait for grief to give you permission⏤do it now, yo! And get to flexin’ those boundary muscles. Love + Big-Ass Boundary Grief Lessons, Keli Psst…Grief-life is a giant mirror for your friendships and relationships in life. It’s a brutal process to watch someone grieve. It’s also a beautiful process to be in the thick of it with them. Also, if you don’t have a robe (it’s like you’re constantly wearing a warm hug), get yo’ass to a Target ASAP. I basically live in this wardrobe now.