My Horrific Plunge into Sandwich Caregiving

Illustration by fran_kie.

By Nina McCollum

Something was wrong with Mom’s brain.

Last summer, she began taking a muscle relaxant for crippling arthritis pain and started acting bizarre. She made impulse purchases, took spontaneous road trips, and sent increasingly too-happy texts.

Mom had taken meds before that didn’t agree with her brain, but she returned to normal when they were discontinued. This was different. This new drug triggered a descent into hell from which neither of us would emerge unscathed.

Mom’s texts became indecipherable. She quit answering the phone. I drove to her place and found her apartment in complete disarray. She had refused the cleaning service, hadn’t eaten for days, and was slurring her words. She said she was going to a “supper club” later. I suggested she stay in and confiscated the muscle relaxant. 

The police called before 4 am. Mom was driving through a park, got out to look at the stars, and her car rolled into a ditch. They charged her with drunk driving because she said she’d had a crème de menthe at the supper club. She wasn’t drunk. Handling the ticket and getting her car out of impound was the start of me taking over all the details of her life.

At the ER, she couldn’t name the president and told a nurse she had been in the Navy (not true). She was given antipsychotics which put her in a state of “excited catatonia” — she couldn’t stop talking, singing, rhyming, and yelling, 24 hours a day. She lost control of her swallowing muscles and couldn’t eat or drink, necessitating a feeding tube. Her arms were restrained. Her mouth became caked with reddish-brown grime that smelled like death. She couldn’t respond to questions or commands.

She was in the hospital for 50 days, and I was there for every one of them. This completely disrupted my life, my job, my ability to parent my 13-year-old son (teen mood swings and all), and any hope for self-care. My availability to my family was nonexistent, either because I was physically gone or on the phone with doctors. I was also trying to bring my best self to a brand-new job. I hardly ate, barely slept, and was awakened around the clock by doctor calls, some of which went on for hours while we debated next steps. 

This kind of clusterfuck is quaintly referred to as “sandwich caregiving.” Nearly 25 percent of adults who take care of a parent over the age of 65 also take care of at least one minor child, meaning more than 11 million people are in a situation like mine. Most of these caregivers are women, and the American Psychological Association says moms aged 35 to 54 in this role experience more stress than any other demographic. I’d call it a pressed sandwich because all of my stress is spilling out of the sides.

Every day was an emergency. I felt like I worked at the hospital, pulling into the parking lot and getting my day pass from the front desk staff, who stopped asking me for ID. Playing music for my mom calmed her constant chattering, but I often left the hospital crying. Then I’d come home, log into work, and try to be productive.

I spent a lot of time alone. I couldn’t process what was happening and be social and have normal conversations with people. I went to the pool with my son (which was extra stressful because I had to step away from my phone), fixed meals, and cleaned my house, but I felt like dying just to end the nightly flashbacks of the horrors I had seen during the day. Being pulled in every direction almost pulled me apart. 

If I slept during this time, it felt like napping. At night, I’d sit on my porch with a glass of wine — just one, because I could be called to the hospital at any moment — and my laptop, researching elderly brain disorders, bookmarking articles to discuss with the team the next morning. 

I felt like a robot, completing only basic life functions. There was nothing left for anyone else. I couldn’t talk about what I saw, and when I spent time with my partner and child, I wasn’t present. We took one day to go to a renaissance fair an hour from home in a location where there’s no cell service, and when we got back to the main road, my phone blew up with messages about mom’s latest emergency. I was short-tempered with everyone and had to channel every shred of positivity into my job. I was mentally and physically exhausted.

The things I saw during my mom’s hospital stay scarred me. Nothing was working. The built-up phlegm in her throat made it sound like she was drowning. She aspirated it, got pneumonia, and went to the ICU. Her body was shutting down. Hospice was on the way.

The doctors used vasopressors to try to stabilize her blood pressure. The psychiatrist said those meds have a brain “flushing” effect, like rebooting your phone. 

That’s what they did. Mom woke up. She was present, listening, and following commands. Days later, she was transferred to a rehab facility where she got physically better but began to decline mentally. This is where we remain, looking for what’s next.

Most elder care facilities seem focused on decline and encouraging dependency, not rehab and regaining strength. A new medication has helped her get closer to normal, but she’s not the same and never will be. Neither will I. 

I started therapy to deal with the things I had seen and heard from the monster that took over my mother and to come to terms with what has followed. I’m constantly checking myself for signs I will go down a similar path. If I’m too depressed to do the dishes today, does it mean I’m losing my grip? Nothing in my history indicates I’ll have the problems she does, but the anxiety doesn’t relent. 

Nor do the tasks related to her care. I pay her bills, order pull-ups, and take her to medical appointments. I’m not physically able to take care of her myself, and even if I could, this isn’t what either of us wanted for the remainder of her “golden years.” I am angry, sad, and feel cheated by the loss of my mother who is here but not — a terrible limbo. On good days, she can manage a short trip to Walmart with me. On bad days, she leaves voicemails wishing me a happy birthday though it’s nowhere near. Meanwhile, I prepare for every day to be her last. 

I’m ready but I’m not. Caring for her has become like taking care of another child. I’m trying my best to manage everyone’s needs: hers, my family’s, and — squished flat in the middle — my own. And while I’m doing it, I miss my mom.