I walked around the frozen parking deck looking for my car on Christmas night, in tears, hungry because I’d only had a cold Wawa pretzel for dinner at my mother’s hospital bedside listening to her favorite Johnny Mathis Christmas album, trying to get to my dad’s apartment because I felt bad he was there alone. I beeped my key over and over trying to find the car, but my son had parked it when my family drove two cars earlier so the kids could see Mom. I found the car eventually.
I knew there would never be another Christmas like this year, finding out my mother had a malignant brain tumor: after going to bed in nearly perfect health and waking up with a terrible headache. As the days have unfolded in the last two weeks, it’s clear my life will be different now. Mom was dad’s caretaker following his stroke and heart events. They live about 90 minutes in Philly from me in Maryland: suddenly logistics are something that become important. The holidays have been a blur of not knowing what day of the week it is, sick myself, the worn path that’s I-95 for me.
Advanced care directives and medical power of attorney forms after a grim cancer diagnosis, taking dad to say rosaries by her bedside in a wheelchair every day, trying to find caretakers and housing for him. I set up a GoFundMe because they have nothing: never owned a home, no assets, no savings, and I’m navigating a system where, although they only live on two social security checks a month, it’s “too much money” to be eligible for Medicaid, so they have no secondary insurance to Medicare. The bills would end them after the first week, so I learn what “spend-down” is.
I fall asleep every night after long hospital days researching care facilities, her rare CNS lymphoma cancer, ways to keep my parents together, which is all they want. When they first told my mother she had brain cancer, she said, “It’s in God’s hands now” and took another bite of her cheesecake. I don’t think any of us will ever forget that. Her faith is inspiring. Although not religious in that way, I’m grateful that she is and that it protects her in a way from the reality she faces. The steroids she’s taking as part of her treatment regimen make her more emotional, but never about her plight or prognosis. Without treatment, she would’ve lived only a few months; she chose to undergo chemotherapy: this will give her another year or more.
Moving my dad from the second-story apartment where he can’t navigate the steps hasn’t been easy. I don’t want to fight my parents on any decisions, all I got for Christmas was a Pandora’s box of decisions I have no way of making, and I’m doing the best I can. If there are other eldest daughters of big dysfunctional Irish Catholic families out there, you get it.
In a quickly changing hospital landscape my mom has an excellent care team and the doctors have been amazing, but it’s the nurses who kept me sane over these holidays. It’s a skilled surgeon drilling through the skull of your person for the biopsy, but you’ll only see that individual for maybe 15 minutes. It’s the nurses you get to know on three-days straight 12-hour shifts when you haven’t slept or eaten and you’re scared and exhausted. They’re the ones steering the ship, handing you the phone charger you forgot, getting your dad’s legs elevated because his ankles are swollen even though he “isn’t the patient.” My brothers brought Insomnia Cookies for them.
My mom’s a painter and recently had painted several dozen small ones; we brought a bunch to the hospital and gave them out to health care heroes; her neurosurgeon said his daughter was learning to paint and he was going to give it to her for a Christmas gift—that meant so much to my mom.
I feel like I’m standing at the edge of a huge black hole. I can’t run my candle business or try out the new 3D printer I got for miniatures because I’m not home. I’m on an air mattress at my dad’s apartment trying to find a safer place for him to live, where my mom would be able to go between chemo treatments.
I’m not feeling sorry for myself, just doing what I’ve done since I was a kid, which is write about my life.