Adriana's Story: How My Mom's Diagnosis Changed My Life
Adriana Santiago is a Breastcancer.org Community member in Phoenix, Arizona, USA.
"She dreams in black and white," she told me one day.
As cancer progressed, my mom began to lose her eyesight and experienced really wild dreams. One day, when I came over to take her to a doctor's appointment, she told me she had dreams in black and white and asked if I did as well.
For about three years now, I've been caring for her. It's been the most challenging and difficult period of my life, yet it has also been a time of unexpected growth and the chance to forge a deeper relationship with my mom than I ever thought possible. It's a common belief that when a family member falls ill, the family will come together to help, but reality can be far different. My mom battles bipolar disorder, and we weren't even on speaking terms the day she was diagnosed. She felt utterly alone, as my sister and brother felt no obligation to help, leaving me as her sole caregiver.
Our relationship had always been tumultuous, filled with misunderstandings and confused apologies. When I first spoke with her after her diagnosis, I asked her to tell me what was wrong, and she yelled, "I'm dying," then hung up on me. It wasn’t until her diagnosis that we started to bridge the gap between us.
I flew out to Illinois, where she was living at the time, and realized she had been taking herself to treatment and her car was breaking down. Her stubborn independence meant she rarely asked for help, but it was clear she needed it. I stepped in, providing my car and began to tackle the mounting bills that had accumulated since her diagnosis.
Her sister, who also struggles with bipolar disorder, reached out and suddenly wanted to help us. I made arrangements to find her a cancer center in Arizona, and we moved her to my aunt's. She was so sick, throwing up every day from the chemotherapy. At one point, she turned to me and asked if I would choose chemo if I had a choice. I said, "Yes, of course," fully knowing that after seeing her so sick and unhappy, I would never choose to do it myself in the future.
Not too long after we moved her in with my aunt, the text messages began flooding my inbox, guilting me for not being there 24/7. I had only been able to fly out every other week or so at the time, and my aunt would fly off the handle, saying I wasn’t a good daughter.
Eventually, after my mom was hospitalized for a second time, I spent the weekend in the chair at the ER, watching her cry as the doctors said it had spread to her brain. I decided to move out to Arizona, leaving behind my life and boyfriend. My work gave me intermittent leave, so I tried to work from Starbucks to not get distracted during meetings. Soon though, my mom had a stroke and lost her mobility, so I was there every day, helping her bathe, shower, and clean up vomit from the floor or from the bed. Some days she would turn to me and say she couldn't do this anymore. Other days, usually when she was high from the pain meds, she would laugh and laugh with me, and we would watch comedy shows in bed together.
We spent the next few years in and out of hospitals, ER visits, and soon I became adept at discussing medical options with nurses, advocating for my mom's care. I used to be terrified of anything medical growing up. I couldn't even watch Grey's Anatomy. And now here I was, sitting in waiting rooms 90% of the time.
Her brain tumor began to grow larger, causing swelling in the brain, mobility issues, and seizures. We would rush in the middle of the night to the emergency room and beg the nurses to let us spend the night in the chair next to her. She would wake up crying and panicked every time the doctor came into the room.
Eventually, my boyfriend and I, after three years, called it quits because I was too stressed. I felt chronically anxious and guilty about everything, including not being able to be happy and fun with my friends and boyfriend. All of this was much easier to handle by myself than to impact other people.
My aunt didn't want us to live with her anymore, despite me having taken her to every appointment for over a year. She said it was too much stress for her.
I eventually moved my mom out to Denver, and I began paying over $3000+ a month for her to be in a facility with nurses and a care team that could take better care of her than I could. She seemed happy there but really relied on my presence, so I felt the need to be there every day to help. It was difficult. I had to take calls and presentations from Starbucks and the lobby. I was starting to slip up at work, becoming forgetful and unable to remember what I was saying. I was a project manager, meant to be organized and focused. I was usually a Type A person, super buttoned-up, and now I barely showered or remembered what I was meant to present on.
With stress, her memory began to slip, and she exhibited dementia symptoms, not remembering how to work Netflix or put clothes on properly. I was so stressed out that I began to have ulcers. My therapist kept saying that I needed to set boundaries and let other people help, but who? It felt like no one was there. My mom's family friend, who took care of me growing up, was an enormous help once we moved to Denver. She began taking shifts visiting my mom and keeping her company, bringing her food, and filling the gaps of time. I don't know what I would’ve done without her.
Whenever I wasn't there, I felt guilty, and whenever I was there, I felt stressed and impatient with her. I would spend nights thinking and obsessing about getting a call about her falling, having an accident, or something even worse. I’d stare at my phone obsessively whenever anybody from the medical team called me. The worry, guilt, anxiety, and depression never went away.
I was just as bad as my mom at asking for help, and for the first time, I actually needed it. Mentally, physically, emotionally. One day, my friends joked about how great my life was because I traveled often. I quickly snapped at them that my mom was dying. How great could my life actually be?
I began to consider that maybe the stronger you appear on the outside, the less empathy you receive from people. I was shocked at what seemed like a lack of community I had — no one was offering to help outside of my family friend — not with taking her to visits, not with bringing her food, not with respite care, not with finding me a support group, not with financial assistance, not with keeping her company, not with making sure I’m eating and showering. At first, I grew very angry at everyone. How could they all just stand by and watch us suffer?
I realized later they must just not understand. After all, they hadn’t gone through it themselves how would they know how to support?
I then decided I needed a distraction because all I could talk and think about was cancer, and it was a major buzzkill. I would obsessively work through the night on weekends at the hospital or in clinics to distract myself. I could tell people at work were turned off by my erratic behavior and my inability to concentrate before a meeting. Eventually, I had team members snickering behind my back. Yes, looking back, I should’ve taken the medical leave that the company offered, but I had nothing else besides work outside of this. I had also spent years growing up in poverty and desperately had something to prove, which I found through work.
I spent so many nights and weekends working instead of being with my mom, and reflecting back, it only resulted in less time spent with her.
She has now forgotten who I am. She calls me her sister. She doesn’t remember my name or our memories and is at the final stages of her life. If there’s anything that I’ve learned from watching the slow-motion stages of a life end, it's that life is not worth being unhappy over, work is not the most important thing in the world, and people need support even though they may not show it.
In facing these trials, I discovered a strength I didn’t know I possessed and learned that vulnerability is not a weakness but a courageous acceptance of our human condition. This journey has taught me to cherish every moment with your loved ones, to find strength in adversity, and to always extend compassion to others, for we never truly know the battles they are fighting.
