Buckle in kids, because this isn’t going to be your typical two-scroll social media post. While I can’t promise it won’t take your time, I can promise that you’ll walk away understanding me a little better, and also having a new frame of reference for how caregivers come into caregiving.
When I first starting caring for my parents, I was 28. I was in college full time, and I worked full time for one of the largest medical nonprofits in the US as an intern in strategic marketing. It began as a short term solution that turned into a full blown situation, and it began innocently enough. My mother tripped and fell off the deck, breaking her shoulder. The next day, my father re-broke his back. That summer set the tone for what would become my life.
I worked full time and did my accelerated online classes, packed my bag on Thursday night, arranged a sitter for my dogs, and then drove the 9 hours home after 5 pm on Friday to set my parents up for the coming week. I spent all of Saturday and Sunday cleaning, cooking, doing their errands, and laundry. I got a nap, and then would wake up at 11 pm, pack my things, get dressed for work, and then drive the 9 hours back and head straight into the office. I commissioned a friend that lived in a neighboring town to check in on them while I was gone. My parents had other family members- children, grandchildren, nieces, nephews- that were all closer than I was- but that didn’t matter. I was in the hot seat. I noticed Mom slept a lot, and if she wasn’t sleeping, she couldn’t really talk to me about anything anymore except for television. Her disposition hadn’t changed, but something else had most definitely shifted.
Mom had her first stroke on July 29th. My father- who was dying at the time, though we didn’t know it- called me to try to talk my mother into going to the hospital. He put her on the phone, and I could hear the stroke in her voice. Strokes and brain anyeurisms run in our family- it has killed every woman for at least three generations before her. I knew what I was hearing. “Ma, you sound like you’ve had like 10 too many margaritas,” I said to her. “You really need to go and get checked out because you know that if you’ve had one, you might be gearing up for another.” She wouldn’t hear of it. “They’ll just tell me to stop smoking and eating cake, and I ain’t doing either one. I’m fine.”
Another came less than a week later. The first had been pretty large, hitting the right hemisphere of her brain. The second was massive, starting in her cerebellum and then re-opening the first one towards the executive function seat. No one knew if she was going to make it. My father didn’t call me because it was finals week. He finally could not put it off anymore, and at 8:07 am on August 6th, 2015, he called to tell me that Mom was gravely ill and had had two massive strokes. I better come back.
My boss came in to discuss my work that day and the contract for my employment. I told him what happened, and told him I was sorry, I had to leave. I packed my things, and walked out of the best job and the best education I had ever known. I thought somehow I’d come back, I promised myself as I listened to my heels click through the parking garage. This was terrible, but I’d go down there and get things fixed somehow, and I’d be back.
By September, it was apparent that I was never going to get to go back to my old life. As my father landed in the hospital twice between August 6th and September 5, and my mother struggled with rehab in a skilled nursing facility, I was living the nightmare everyone knows about and no one names. I ended my lease, packed up everything I could, and moved my belongings and my dogs to a house my then-boyfriend found for me back home. While I dealt with everything, he lived there and took care of them. Home was six hours from where my parents were living. I saw him sometimes on the weekends.
As Mom s l o w l y improved, my father rapidly declined. Convinced that all of his problems were because of his broken back, he worked tirelessly to get scheduled for surgery. He would hear no different, though I tried to get him to listen to my reasoning. It was like watching that really heinous part of E.T. where both Elliot and ET are sick, and the bond starts breaking. One starts dying, the other starts living.
It was at this juncture that Mom’s true state came to light. Her brain, even before the strokes, had begun to change. The hippocampi and amygdala were structurally different, deteriorating. The limbic system was damaged. Where her strokes had occurred, the brain had begun to calcify. Her vascular system, perilously delicate from both age and decades of smoking, drinking, and eating enormous amounts of feel-good food was basically a system of dry-rotted bendy straws. Mom had both medical and vascular dementia, a combination that did not give an excellent prognosis for good quality years. Her doctor encouraged me to move them to where I lived- there were much, much better chances for care and quality of life here than where they currently were. It was unusual for a physician to admit this sort of thing, but I established early with him that we didn’t need to talk in diplomatic tones and platitudes. I needed information, cold hard facts, not vague positivity. He frankly said: “with the infrastructure and medical campuses such as they are, she won’t last 18 months. I can medicate her, but there is nowhere that can give her the comprehensive care she needs in this entire state. If you take her with you, she’s got a chance. They have the OT and the PT, the T3 MRI machines, the social workers and day programs. I did residency work there. It’s either there or you go to Georgia if you want to try to help her live.”
I went home and told my father, and we began planning for them to move to be near me.
My father would never make it there. At the end of October, I went home to go to Voodoo and celebrate my birthday. I took a long look at my father sitting in his chair, and my gut told me to take it all in because it was the last time he’d ever be here. He left the day after I did, leaving my mother in the care of a family friend while I was gone for the weekend. The man drove 5 hours north with several disintegrated vertebrae, and a tumor that had consumed 80% of his liver that we did not yet know about, for surgery. Looking back on it, I am in awe that his sheer will to live and work on being better could carry him through so much pain.
In the meantime, I had my weekend, and then came back to get my mother for the holidays. I was bathing my mother, toileting her, doing OT and PT rehab myself that I could create on my own, remember from when my grandmother had her stroke when I was 3, and doing some deep dives on the internet. I began the process of cleaning out their home. I was getting daily calls from family members about my dad, but they assured me they were doing everything they could- and they were. I cannot fault them at all.
On the 10th of December, I got the call that I needed to come to where he was and take control of the situation with him. I loaded up my mother, arranged someone to take care of the dogs again, and we set off for the hospital where my father was. I had him moved to a research hospital a week later. On December 22, a 1:03 AM, the lead physician came to tell me my father had a rare and aggressive liver cancer. It mimicked healthy liver cells so well that a biopsy couldn’t catch it. The only way you found it was by doing a series of imaging because the tumor reversed the way the blood flowed through the liver. It would not respond to any traditional protocols; the only thing to do was a transplant and he was too far gone for that.
In my delirium, I held out of my arm to the doctor, who looked at me quizzically. “Ma’am, what are you doing?” “Well, let’s go draw some blood and do some labs and see if I can give him part of mine. I don’t need fried foods or liquor that badly.”
“Ma’am, come look at these images with me, please,” he said, and led me over to the computer. He pulled up the images and the video, and I knew what I was looking at as a tiny portion of health tissue struggled against a behemoth of white mass wrapping around it like a boa constrictor, slipping a thick tongue of tumor into his artery. “How is he even alive?” I said, and then quickly “never mind, I know how he’s alive. He’s too stubborn to die. You can’t kill that man. People tried to often enough.” The doctor just looked at me while I processed what I was seeing. Finally I said, “You will have to tell him. He’ll never believe me, and he’ll try to fight me about it. We don’t have a lot of time left, and that’s not how I want to spend it with him.” He assured him that he would, and I told him that he needed to wait until I went to get my mother in the morning, who was staying at a friend’s apartment nearby.
Very freshly 29, I was slapped in the face with mortality and my own helplessness to stop the sands from slipping to the bottom of the timer. On my mother’s birthday, she learned her husband was dying soon. On Christmas Day, he slipped into a coma. On the 28th, he died. My mother, having already lost her ability to physically function, to control her emotions or impulses, he ability to drive or live independently just a few months earlier, also lost her husband and best friend of 55 years.
Her wail wrenched out your soul, wrung your heart dry, and wearied your nerves. It didn’t stop for months.
After my father’s funeral, I began the process of being half-crazy with grief and also trying to dig out from under the devastation of her diagnosis and his death. I had nowhere to turn but to my friends again, who (God love them) helped me when they could, how they could, and how I asked. In this way, I was extremely lucky and wealthy- many caregivers never have that kind of support.
As I assessed and uncovered the deep, deep ruin of 55 years of a lack of financial literacy and an overabundance of an immortality complex, I realized I needed an adultier adult than myself. Broke, grief-stricken, young, and completely out of my element, I waded into the chaos and began fishing out the salvageable pieces of my mother’s life while proverbially carrying her on my back. As lucky as I was to have friends that would show up to help me do the work, I still did not have a cohort to talk to or any reasonable index of life hacks to be a caregiver or provide the kind of care she needed. There was no oral tradition, no elder to guide me. I was on my own, and it made it all the more bitter and hard. I searched endlessly for someone who could offer my guidance, only to come up with well wishes that left me in the same position. In February of 2016, I sat at my laptop and cried silently for myself in the wee hours of the morning, the first moments of peace I’d had since early in the morning the day before. As I scanned through forums and endless Google searches, I said to myself “it doesn’t have to be this hard.”
I vowed then and there that I’d do what I could so that it didn’t have to be hard for others. I was painfully transparent on social media about what it looked like, about the mess, about me as a mess. The triumphs and tribulations, the many, many failures, creative solutions, and my bitter grief at the loss of my father and the life I had before, the hilarious things my mother would say, her breakthroughs in physical ability, and also the ways in which she was not the same woman I had known growing up. So much of the issue was that caregivers had been pushed to the fringes of society. Left without people and without a vocabulary to adequately express what this life was like, they were silenced and shadowed, figments of former people that someone used to know.
I refused to gracefully exit living for the comfort of other people. First, I deserved to live. My mother would not survive this disease, but I would- and I needed to have something to live for. Second, the sanitation of aging, disease, and death from society was at the root of why I had no one to turn to when I needed someone the most. I would not feed the void of isolation and silence that would gladly overtake me, given a smidgen of a chance. I would not be dismissed, and I had all the pomp, unmitigated gall, and shameless humility to flounder about in front of people and figure out how to float and then swim and talk about it. Furthermore, they needed to hear this because chances were that someday they’d be going through something similar in their own family.
And so began my long, loud, rebellious siege against the marginalization of caregivers.
Five months later, I loaded what was left of her belongings into a 16 foot U-Haul, which I deposited into a storage unit, and I moved my mother totally into my home. She still lives here with me, almost 7 years after her diagnosis and 5 years past her original proposed expiration date. She had another stroke in 2017, and once again defied the odds and came back from it to the shock of her doctors.
I continued to rebel against the enormous quiet losses and self-erosion that caregivers are expected to just take by doing the exact opposite. I dance in parades, I got married (and am still happily married), I started a business, I started advocating for caregivers and people with dementia and speaking publicly on panels and in presentations. I finally screwed up enough courage to start writing this blog for the people who were like me in 2015/16 and spending anxious hours in the middle of the night searching for someone, anyone, anything to tell them what to do, what to expect, how to live, or simply that we aren’t alone or resigned to losing our entire selves to this.
And so, friends, that is the story of how I ended up right here, writing this whole novel on a blog just in the off-chance that someone, somewhere is screaming into the caregiver void and needs someone to yell back to them.
The Dementia Diva 